This Little Miggy Stayed Home

Special Needs Spotlight: Sebastian

2012-01-27T04:25:00.000-05:00

Hi. We're the Sharps! We currently live in Toronto, after living in Cairo for two years. Our son Sebastian was born in London, (UK) about three and a half years ago. Due to a traumatic birth and subsequent brain injury from lack of oxygen, Sebastian has (dystonic) cerebral palsy. But it doesn't have him. He already has more stamps in his passport than most adults. He's very easy going, and has his dad's sense of humor and his mama's dramatics. You should see his pout. He loves school and has a lot of girlfriends. His favorite author is Mo Willems, and he's a big fan of Elmo. Sebastian doesn't talk so he uses a program on his iPad, as well as facial expressions and sounds to communicate. He loves music, swimming and horseback riding (Hippotherapy) His smile can brighten the greyest day. Come visit us at Free As Trees, www.karamelissa.wordpress.com for more of our adventures.

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Miggy: Your son, Sebastian, has Cerebral Palsy, a condition that came about due to a traumatic birth and lack of oxygen at birth. My first question is can you educate us about the causes of CP--is it always due to lack of oxygen at birth? Can a fetus have CP in the womb, or is it always caused by external circumstances?

Kara: Cerebral Palsy is an umbrella term for motor disability. It can be caused in many ways and there are also different kinds of CP. Yes, Sebastian's CP was caused by grade 2 HIE, or lack of oxygen to the brain just before, during and after birth. CP can also be caused by an infection in the womb. Damage to certain areas of the brain cause different types of CP. Strokes, brain bleeds, infections, any long period of time with a lack of oxygen. Some premature babies get CP due to complications from their early birth, such as a brain bleed. CP can also be caused from any type of brain damage in the first years of life. Just as there are many causes of CP, there are also different types. No child is the same. The area of Sebastian's brain which was damaged is called the basal ganglia. His type of CP is specific to damage in this area. He has dystonic CP, with mixed tone. Meaning his trunk is low tone and his extremities vary from high to regular tone. His CP affects all parts of his body.

For more information about causes and types of CP, check out Reaching for the Stars.

Miggy: Second can you talk a little bit about your thoughts and feelings regarding your sons birth. Was this outcome preventable? Have you reconciled "what could have been" with the reality of Sebastian's condition? How has your birth experience changed your view on birthing in general? (I know that's a lot of questions about birth!)

Kara: We believe that had there been proper monitoring and intervention during the labor and birthing process, Sebastian's CP could have been prevented. I think that you go through stages of grief over what you thought would happen, how you imagined your child would be and then accepting him as he is. For some it takes longer than others. I don't think it took us too long. We moved from London, UK to Cairo, Egypt when Sebastian was 3 months old. There were no resources for me and once Sebastian was officially diagnosed with dystonic CP, I started reading everything I could online and reaching out to support groups, online. I found blogs of moms with kids like Sebastian and I met some of them when we traveled to Australia to visit my husband's family. We just lived our lives the best we could and enjoyed our son, taking pride in the little things. I think the trauma of the birth took longer to get over than the acceptance of our son's disability. It was a long time before we felt ready to have another child. Now that I am pregnant (15 weeks) I have thought a lot about the birthing process and how I want it to be this time. I have done a lot of writing and letting go with Sebastian's traumatic birth so that I can be ready for my next birthing experience.

Miggy: Explain how Sebastian’s special needs affects your day-to-day life?

Kara: Sebastian is our only child right now so I don't know the difference between how a typical child's needs affect daily life, although I do imagine there are some! Sebastian goes to pre-school in the morning for two hours in an integrated program, 50-50 typical and special needs kids. It's a fabulous program, although I never imagined I would send my child to 'school' at such a young age, he started at 2.5 years. As a stay at home mom, and a teacher prior, I had planned to stay at home when Sebastian was born, regardless, so the thought of pre-school had never entered my mind. It also affects us financially since it is an additional cost that we did not plan on, but it has helped us have access to other programs/therapies for Sebastian as well as gives him a space for independence and social development. Many afternoons a week we have therapies which we travel to. Sometimes 3-4 times a week. On the odd week we have something every day, if a doctor appointment is mixed in and we are really lucky/happy to have a couple afternoons off a week too. On the afternoons off we try to hang out and do typical things, like play with toys, go for a walk, and even watch a fun movie once in a while if the weather suits. Sebastian is not physically independent so he needs me to help him play with toys, etc., although there are some toys he can press buttons on and interact with when he is in supportive seating. I can use this time to also integrate some of the things we are doing in therapy, but mostly we just try to have fun and take a break from the regular routine. I make all of Sebastian's food and feed it to him, so meal times can take a bit of extra time. Sebastian is also non-verbal so we are working with a team to create a communication book as well as use different applications on the iPad. I involve Sebastian in everything I do, such as making dinner. I take naps with him or am at least in the room, in order to monitor whether he has a seizure or not, as he has partial seizues sometimes within the first 20 mins of sleeping. Sebastian started having seizures the summer before last. Thankfully while we lived in Egypt he was seizure free. His seizures are caused by the damage to his brain and are 'controlled' by two different types of seizure medications. So after I learned all about cerebral palsy, I then had to learn about the world of epilepsy/seizure disorders.

Miggy: What are the biggest worries you face for your Sebastian?

Kara: Not being included in the world around him. I am a huge advocate for inclusion (done properly) in the education system. I have seen how much it has already benefited Sebastian and can only imagine what segregation would do to his development. I want Sebastian to enjoy life and discover the world around him. And he does that. I want to be able to provide opportunities to help him continue to grow and develop in this way. Do I worry about the future, like who will take care of him when we aren't here to do so? Nope. I worry about finding him the best school to go to. I worry about doing as much as I can to help him be as involved and independent as possible. And I'm not a fan of the seizures. At all.

Miggy: And what are some of the triumphs you hope for?

For happiness. For living a full life, engaged in the world around him. For some independence.

Miggy: How can people best approach or respond to Sebastian?

Smile and say hello. Give him time to respond to you.

Miggy: Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Kara: Sebastian is 3 and a half. He is small for his age. Sometimes people call him a baby or treat him like a baby because he looks smaller and also can't talk. He also wears glasses, so that gets him a lot of attention. When he is in his wheelchair sometimes people smile, sometimes people look past him, or ignore their children's questions about him. I want him to be treated like a child. He understands conversations and actions around him and with him. I want people to see him for who he is an not for the chair he is sitting in and I most certainly do not want people to ignore him or shhh their children. I'd be happy for them to come up and say hello and ask questions or introduce themselves. I used to want to put a sign on his stroller that said "I like smiles, share one instead of staring."

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Kara: You can't worry about everything, especially about the future. You can't change the way things are, you just have to go with the flow and work with what you've got. Lean on each other. Ask for help or support when needed. Meet other moms in similar situations. Life is good. Because he's in it. And he almost wasn't.

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I want to thank Kara for sharing her story with us. So many good thoughts and I love her parting line, "Life is good. Because he's in it." Isn't that how we all feel about our children, special needs or not? And isn't Sebastian just the cutest? No wonder he has so many girlfriends.

Thanks again to everyone who has emailed/posted a comment for SNS families. I got a lot of emails so I'm still trying to get to everyone! But keep 'em coming. Again, if you know someone who would make a great Special Needs Spotlight please email me at thislittlemiggy at gmail dot com.

Have a great weekend!

Nostalgia

2012-01-25T00:09:00.002-05:00

My parents have been visiting this week. The first night my mom had a gift for me, as usual...she's a gift giver that one. Underneath the neatly wrapped present, was a raggedy, old spiral-bound sketch book. My eyes widened and my outstretched arm passed over the actual gift, to a notebook of paper I remembered immediately. It was like being hit with a memory stick as the recognition of each drawing came back to me forcefully. I remembered that first drawing. I remembered what I was doing and what I was trying to create...my own character, a villain specifically.

Growing up I was obsessed with Disney and wanted to be a Disney animator more than anything in the world. I studied and dreamed Disney. If there was a school assignment with any creative leverage I would find a way to bring Disney, and specifically animation, into the project. In 7th grade we were studying Japan and everyone had to do a project and presentation on the culture or history of Japan. I did my project on Disneyland Tokyo. The entirety of the project consisted of me drawing Mickey, Minney, Goofy and Donald in Japanese regalia for my backdrop and making Mickey Mouse sugar cookies to give away at my booth. That was IT. I think I got an A.

By the time I got to college I was mostly over my Disney/animation phase and moving on to fine art. But seeing these old sketches really brought back memories. Not just of the drawings themselves, but of a young me who would practice, practice, practice until I got it right. Sure I had some talent, but more importantly I had determination, passion and of course much more free time.

My mom told me my little brother held onto it for years and used it as his inspiration for drawing as a kid, but now he thought it should go back to it's rightful owner. My little brother graduated from a great art school in Georgia and is a fantastic cartoonist/artist in his own right. See his work here.

As I prepare for this next Art-a-thon I unabashedly admit that I'm rather inspired as well. I'm not sure that's allowed...being inspired by your own childhood artwork, but again it's not really about the drawings themselves. It's knowing how fearlessly I drew. I didn't worry about mistakes or failure or what-if-it-looks-dumb. It's remembering my room plastered in posters along side my best pencil sketches on loose leaf notebook paper. I drew because I loved it and I drew with little to no self consciousness.

And truthfully, I am rather impressed with the fact that I did these drawings in 8th grade. Some of them are really spot on. Sweet of my little brother to want to give it back and sweet that he kept it safe all those years. While not the properly wrapped gift my mom intended, it was a great gift.

This all sounded so much cheesier than I intended, but I really don't have time for a re-do....so there it is.

Master of Disguise

2012-01-24T00:33:00.001-05:00

It's amazing to me that this beautiful face, seen here modeling sisters pop-bead earrings...

....is also the same face seen here, modeling her pureed spinach...

....Which sorta reminds me of this face, seen here.

How does she do it?

Lately

2012-01-22T23:13:00.000-05:00

Thank you so much to everyone who emailed me with potential spotlighters! We should have some more great spotlights to come. Yippie!

In other news....

here are a lot of pictures lately.

Snow day at preschool.

They brought a truck load of snow for the kids to play in. Oh Texas.

Holding the book with her left foot, turning pages with her right hand.

Awe. Some.

No Spotlight. Boo!

2012-01-20T05:01:00.000-05:00

Do you know what the hardest part of doing the Special Needs Spotlight is? Finding families to spotlight. I've been so lucky and fortunate to have people email me about themselves or their friends, and I'm so grateful, but it's starting to slow down! So I to ask you to please, spread the word on your blogs or to your friends about the spotlight. If you know a family with a special needs child I would LOVE to feature them on my the blog. It doesn't matter if the particular diagnosis has been done before, each story, family and child is unique. Please email inquiries to thislittlemiggy at gmail dot com. If you (they) have a blog please send me the link, if not a quick intro/bio about your story will do. Thanks!

In lieu of the spotlight I'd like to share this video (pictured above) about a very cute little boy who happens to be a child model who has appeared in national ad campaigns and who also happens to have down syndrome. I particularly like the message that really comes across in this piece that, of course he's in these photos...he's just an ordinary kid doing ordinary kid things. I couldn't agree more.

Watch the video and read the article here.

The Cleanse

2012-01-19T00:21:00.000-05:00

my big girl jumping out of the swing

Day 3 of this cleanse started out as rough as day 2, when I was already thinking of abandoning ship. But with my resolution pounding in my head strong, strong, strong I kept forging ahead out of sheer stubbornness. In case you're wondering if stubbornness can ever be used for good, this is your example (that sentence was meant primarily for my husband). And so it is on the eve of day 3 (forgive me, I think it's the Downton Abbey talking) I'm reflecting on what I feel this cleanse is teaching me thus far.

Ahem....

I've come to realize that I rely on food for pleasure and satisfaction, for that Calgon take me away feeling, each and every day. And while I've refrained from sugar before, I would still turn to other foods (popcorn, breads) for my little moments of food-ecstasy. Even in my early mothering days with PSP as I struggled to figure out this mothering gig and the fussy, fickle baby that was making it all so hard I would pop Dove chocolates like the edible sanctuary they were and think, this chocolate is the only fun/enjoyable/pleasurable thing I get to look forward to all day. Almost 5 years later and I still use food as my mid-day retreat, my evening pat-on-the-back for a job well done. I've always liked food, but it seems I've made it so intricately tied with the stresses of motherhood and every day life, that instead of a once-in-a-while indulgence it's become a daily necessity. At the same time I don't think it's an entirely bad thing. It's OK to love food and to want to eat good food. Even treats. I'm not damning the whole practice.

But...

There comes a point where I need to be more aware of what I am eating and why. Because sometimes a bowl of ice cream just isn't enough...so I have another. And occasionally another. And I realize I'm scratching the wrong itch. Sometimes the small bit of joy found in a scoop of ice cream isn't what I really need. Sometimes it is, but sometimes it's not.

Sometimes I need to do something creative, or be more present with my children, or have a good conversation with my husband, or call a good friend, or read a talk/the scriptures/something inspiring or just be by myself and think some good thoughts.

I wasn't really expecting this from the cleanse, but I like it. A little more awareness never hurt anyone.

The Art-a-Thon is Back

2012-01-17T10:53:00.000-05:00

Princess Sparkle painted this sometime last year at her pre-school, I believe when she was still 3. I love everything about this painting. I love the colors, the design, the brushstrokes, the simplicity and I love that my daughter did it. I saved it and saved it and finally got a frame for it a couple weeks ago. As much as I want to save every picture she paints and draws, it's just not realistic and most of them get thrown away. The special ones get photographed and put in her digital portfolio, but this one...this one I knew that not only could I never throw it away, but that it needed a frame and a permanent place on our wall. I've painted with my daughter plenty of times and what usually happens is a simple picture starts to emerge, then another color is added, and another and more and more until it's just one giant smear of paint usually somewhere in the brown color story. And there's nothing wrong with that, I remember doing that quite a bit when I was a kid too...more, more, more! So to see this beautiful and simple painting that shows so much restraint and maturity, as well as confidence... I was amazed. And inspired.

For one of my birthday gifts my husband brought me a stack of pre-cut wood to paint on (I paint on wood panels, as opposed to canvas) and took the liberty of scheduling me 4 Art-a-Thon's this year. My first 24 hour Art-A-Thon will be January 27th-28th (Friday evening to Sat Evening). Out of everything that my husband can give me, the gift of time and encouragement so that I can paint is probably what means the most. In case you forgot, I had my first 24 hour Art-a-Thon a couple years ago, wherein I had 24 hours to produce 3 paintings (I set the parameters ahead of time, including subject matter and number of paintings). It was a great experience with some decent results. I'd like to encourage anyone else who wants to participate to do so....especially you artists turned stay-at-home-moms who seem to have let art slip through the cracks as life and motherhood took over.

What a lucky wife and mom I am to have a family who encourages and inspires me where my first love, art, is concerned.

*Just a little detox update. I know it's only been one day, but I was surprised to find that last night I was especially tired and had a headache...the detox warns of such symptoms in the first few days. Also, while most of the food has been delicious, this morning's kale/parsley/lettuce/mango/ginger green smoothie is nasty. No two ways about it.

Reluctantly Crouched At The Starting Line...

2012-01-16T01:03:00.002-05:00

Today marks the kick off of my 28 day wellness challenge. Inspired by a friend taking on the same task I decided to give it a go as well. It's basically whole food cleanse to rid the body of toxins* but not the kind of cleanse where you practically starve yourself. Don't get me wrong, I think it will still be a challenge, but the fridge is stocked with leafy greens, fruits, nuts, berries and I threw in a little patchouli and incense for good measure. When in Rome... The program is pretty well laid out on Martha's Whole Living website with recipes and grocery lists for practical planning. I'm hoping to make it the whole 28 days, but we'll see.
Wish me luck!

I also thought I'd let you in on our latest TV obsession that I kept hearing about all over the internet called DownTown Alley. DownTown Alley? Ooooh, that has a rather dangerous and edgy sound to it. Well, between the both of us, B and I misheard/misread the actual title, Downton Abbey, and unwittingly came up with this completely ridiculous (not to mention completely opposite!) title DownTown Alley...we've been laughing about it all weekend. Now I don't think we'll ever be able to call the show by it's proper name. Either way we devoured season one this past weekend and can't wait to start season 2. Are you a fan?

*Like my husband I'm not sure I fully believe all this toxin talk, but there seems to be plenty written about the benefits of avoiding sugar, dairy and gluten so I consider this my personal experiment with this type of diet. If you have any experience with this type of diet I'm all ears!

Special Needs Spotlight: Alex

2012-01-13T04:23:00.000-05:00

My name is Erica and my youngest son, Alex, is three and a half. He has a very rare genetic condition; he has a duplication on his 4th chromosome. There is no syndrome or name for his genetic condition. In fact, many doctors have tried to find a similar case and Alex is the only one with this specific condition. This is wonderful in many ways because it means there's no limit to Alex's potential and he gets to show us what he can do without any specific labels. On the other hand, it's tough because we don't know what issues we're dealing with or looking for until we run into trouble. There are no support groups for this specific condition and we don't have anyone to watch to have an idea of what the future holds. But all of this has freed Alex and our family to simply enjoy each day knowing Alex will show us what he's ready for. We are so blessed to have a big and very loving family who surround us on this journey.

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Miggy: You knew pretty quickly that something was not quite right with Alex's development, but at what point did you really know how serious it was and that Alex would now fall under the category of special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Erica: Since we knew from the first week of Alex's life that he has a genetic condition, I knew developmental delays would be a part of our story. We have been considered "special needs" since Alex was in the NICU. A lot of very well meaning friends and family tried encouraging me by hoping there would be no issues but a mom just knows; I knew in my heart that Alex's path would look different from the day the geneticist walked into my delivery room. Even though I knew that and had a medical diagnosis, I didn't realize how much fear I carried about what those delays would mean. I was scared of the "special needs" label. What would I miss out on experiencing with Alex? How would the world treat him? Would Alex develop to a certain point and just stop? I'm not sure at what point I started to find peace with those fears. Now that Alex is getting older and can show us more and more of who he is, I worry less. I see how his personality, determination and constant state of curiosity overcome all of his delays and I know that his joy and happiness will be what carries him far in life. I used to rock Alex and pray that as his mom, I would see him smile and hear his laughter; it's those two things I needed from him. I wanted to know that he knew me, any other delays I could handle. He has given me that and so much more and that makes me one happy momma!

Miggy: Explain how Alex's specific special need affects your day-to-day life?

Erica: Well, I'm so used to living with our differences that as long as we're home, I don't see them much anymore. In many ways, I do feel like I still have a baby. I feed him, change his diapers, use a stroller, carry him, brush his teeth, dress him... I feel the effects of Alex's special needs more when we're out in public or around children his age. People are kind and offer him treats and I have to explain he isn't eating yet. People will ask him questions and I have to explain he isn't talking yet. Alex has a g-tube so feeding him in public really highlights our special needs. He can't eat cupcakes at birthday parties, isn't able to eat off of the children's menu at restaurants, can't eat the Halloween candy or enjoy ice cream from the ice cream man. I guess the eating issues affects us in every day life and socially more than anything else. I've gotten to the point where I don't remember life without special needs but then there are the days when I feel like our family is now so different that I don't know where we fit in and I'll just have a day of being sad.

Miggy: What are the biggest worries you face for Alex? Additionally, what are some of the triumphs you hope for?

Erica: My biggest worry for Alex is how others will treat him. I'm so afraid for him to experience a hurtful comment, mean laughter or people who will only see his differences. I'm afraid of the labels that will be placed on him. I worry that he will be so trusting and open to the world and it won't have a place for him, that he won't get back the smiles and laughter he gives out. I don't worry about him physically. I know that he will continue to grow and learn new things his entire life and there isn't a limit to what he will do, when he's ready.

The triumphs I hope for... I could sit here all day and list those! When it comes down to it, I want him to be able to accomplish every thing that is important to him, not what our world says is successful. I want him to keep his joy and contagious laughter. I want him to always face life with confidence. I want him to have peace about who he is, knowing he is made just as he was designed to be. I want him to find true friends, experience love and have deep relationships with those who love him.

Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Erica: We've learned to find the humor in a lot of situations so I feel like every day we have something to laugh about! Hearing my six year old use the words, "bolus", "extension" and "g-tube" has really shocked some people and that makes us laugh. Alex loves to take his pants and diaper off so looking over at the mall play area to see your son's cute baby cheeks crawling around gives us a good laugh, after the initial horror! :) One of my favorite moments was when we were at the mall play area and Alex was an infant. I sat down to feed him with his g-tube and before I knew it, I had six or seven children sitting at my feet, watching me feed Alex and asking questions. It looked like story time! The mothers were so embarrassed but after reassuring them I didn't mind, it was a very social and fun lunch time for us!

Miggy: How can people best approach or respond to Alex? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Erica: When it comes to approaching us, I'd always rather someone just ask. I've had so many kind people ask about Alex's g-tube or his delays and I've found that to be so much better than people who just stare. The staring hurts the most because my insecure mommy mind comes up with thoughts I'm afraid they're having about my son. When people stop to ask me about Alex, they are almost always sure to get a smile, high five or even a hug; I like when others get to experience a moment that helps them to see past his special needs to the wonderful little boy he is!

I also have found how important it is for people to acknowledge my older son, Charlie. Sometimes people ask about or give a lot of attention to Alex without doing the same for Charlie. Charlie is just as important and special of a little boy and he knows just as much about Alex as we do! He loves to answer questions or is just proud to be seen as the amazing and one-of-a-kind big brother he is.

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Erica: Gratitude and trust. I've learned to be grateful for everything God has given me in life. I try to take nothing for granted and have learned that even the toughest situations are full of beauty. I've learned to trust my instincts and the things I know to be true in my heart. I never knew on the day Alex was born and my world felt like it had fallen apart, that I had just started on a journey that would bring me more smiles, laughter and love then I ever knew existed. For that I will always be grateful.

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Thank you so much Erica! Didn't you all just fall in love with Alex? I did. The picture of those two sweet brothers melts my heart. Additionally, I one thousand percent agree with and love what Erica said about big, brother Charlie! He is amazing and special and deserves just as much attention...I know I have often felt that way with Princess Sparkle. I'm grateful that people are so kind to Lamp and want to single her out with positive comments, but I often worry that PSP feels 'not special enough' sometimes. We could probably do a whole series on siblings of special needs kids! Thanks again Erica. It was a treat to share your Alex and the rest of your family with us.

Remember, if you know someone who would make a great spotlight please email me at thislittlemiggy at gmail dot com. Have a great weekend!

Mean Mom

2012-01-12T15:21:00.000-05:00

Try as I might to play Uno, let them eat chocolate, and watch Yo Gabba Gabba on repeat, I too succumb to the occasional mean mom status. I wanted to submit this written and photographic evidence for Princess Sparkle's personal records should she ever need proof of the maternal tyranny under which she was raised.

Today I told Sparkle Pants she has quiet time in her room. These days she is often allowed quiet time on the couch watching a show or movie, but 2-3 times a week must still have quiet time in her room. She usually comes out early and I usually give in due to her defeated little slouch and her sad little puppy eyes. Well today I said no more! She is to remain there until her clock says two zero zero. 2:00. Period.

Per usual, she came out early and per usual I told her to go back in her room...but this time I stuck to my guns.

It's been a long time mom!

I know, but it's not time to come out, I said.

Then I saw a note in her hand and asked if she had written me a note. She's been doing that a lot lately. Awwwww. Smart girl...a note to the warden just might do the trick....

Nope.

Turns out it was her log of the minutes on the clock:

Almost cute and pathetic enough to make me reconsider....almost.

Look mom! It even got up to one hundred!

One hundred. The biggest number in the entire world in the four year old mind.

I sent her back with a charge to play instead of watching the minutes tick by.

As I went back to watching clips of Ellen on Hulu I couldn't help but think...Quiet time and practicing telling time/writing her numbers? Dang, I'm a good mom.

Sweating the Small Stuff

2012-01-10T23:57:00.000-05:00

Besides the fact that this isn't the most flattering picture of either of us (no that's not a double-triple chin, it's Lamps arm!) there are two things about this picture that make me sad.

1. My long, flowing, high pony-tailed, wavy hair.

2. The scarf in said long, flowy hair.

1. So here it is...the regret.

I am regretting the midnight chop-a-thon in my bathroom those many months ago. I see pictures of my long hair and I miss it. I see pictures of my hair in a high pony, a ballet bun and I think...oi, what did I do?

But then I remember....your hair was falling out in record mumbers (post partum), it was hot, hot, hot and you needed change remember? You needed to do something gutsy.

So there is it...damned if you do, damned if you don't.

But at the moment, it sucks. I've been doing everything I can to pretend like it's long again. Mainly, headbands with a barely-there, low bun on the nape of my neck. I'm not fooling anyone, especially not myself.

I've had short hair before and loved it and so I thought I'd love it again. But I don't. My hair doesn't grow fast either. I'm stuck. Sad.

2. Now for the scarf. I've lost it. It's gone. And for a little piece of fabric it's really bumming me out.

I've had that little turquoise scarf since high school. It's from the Gap--where I worked in high school--and it's been a little constant in my life for many, many years. The perfect color, the perfect size. Like a mini security blanket I wore in my hair. I've worn it around my neck--when that was cool--but mostly it's been tied in the perfect size knot for a headband for years. I've used it to hold back my hair when washing my face or as the perfect last minute accessory for any occasion. It's one of those things that I've lost track of time and time again, but I always find it eventually. However, the last time I really remember seeing it was in September. I have looked high and low. It's gone.

I know what you're thinking...These are not real problems.

But if someone were to ask me, What are the biggest problems in your life....in reference to your hair?

Without a doubt I would answer, Cutting my hair and losing my favorite scarf are the two biggest, most troublesome, monumental problems in my life....in regards to my hair.

See? Real problems.

Unprofessional Photo Shoot

2012-01-09T08:53:00.000-05:00

We're not professional photographers by any means, but I think B's impromptu photo shoot with Lamp this weekend turned out pretty well.

Love that sweet mug.

Special Needs Spotlight: Lily

2012-01-06T05:00:00.001-05:00

Hi! My name is Kym, and I didn’t become a mother until I was 41 (and a half)! Up until that point, I worked in marketing, mainly throwing huge events for a large tech company. My job was fun! But soon after I got married, my husband, Martin and I decided that we weren’t getting any younger and needed to start our family right away. 14 months after we were married, we had our little girl and named her Lily Faith.

Lily turns three-years-old this month and while the doctors still haven’t figured out what Lily has, we know she has hypotonia. Hypotonia is better known as "floppy baby syndrome," meaning her muscles aren't fully developed. Usually hypotonia is a symptom of a diagnosis, however, in Lily’s case, she is diagnostically homeless. What we do know is that Lily’s hypotonia makes it hard for her to sit up, crawl, talk, and walk. In fact, she has yet to do the last three, so she is severely delayed.

This summer, I started a blog so that I could find others who were struggling with their disabled children and have similar situations. Mainly to chronicle my adventures with Lily, which are many! You can read all about them here!

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Miggy: Kym, can you take me back to the day you knew something wasn't right with your daughter Lily? When were your fears confirmed and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Kym: When Lily was first born, both my husband and I knew that something wasn’t right even before the doctor did. Lily’s body shook as if it was being electrocuted every minute or so. When we picked her up, her head, arms and legs would just flop around. It was obvious that she didn’t have any muscle control. Even after nine days in the hospital and having every test imaginable (and passing them with flying colors), the doctors were convinced that our daughter was perfectly normal and would soon “grow out of this phase.”

At around 3 months, Lily still wasn’t making any attempt to hold her head or appendages in position and seemed to still not have any muscle control. When she was about 6 months, Lily still couldn’t put her binky to her mouth, she wasn’t weight-bearing or attempting to roll over. Our neurologist, who is still baffled, said she may not be as “normal” as other children but she would, “Probably meet her milestones by around ages 3 or 4.” Knowing that I had to wait 3 or even 4 years to see if my little girl would catch up to the other kids her age was inconceivable at the time. That was a lot to swallow for a first-time mom. I cried a lot that first year.

Now, I live in reality and know that Lily may never catch up to other children her age. She still doesn’t crawl, sit up for more than 30 seconds or even hold her sippy cup. Worse, she doesn’t talk. Although it’s still heart-breaking for me, I have learned to manage my expectations of her and just let her be Lily.

Miggy: Explain how Lily's specific special need affects your day to day life?

Kym: I call Lily my little human rag doll. To give you a better mental reference, it’s like taking care of a continual newborn. It’s hard. Lily can’t do anything on her own. My husband and I have to feed, dress and carry her everywhere. Basically we do everything for her because she can’t.

Lily is also mentally delayed, making it difficult for me to know exactly what she wants. I’m pretty good at guessing, but it can still be pretty nerve-wracking if I know she isn’t happy and I can’t figure out what she needs. Like most parents who have a child with a disability, the bigger she gets, the harder it is for me to carry her up and down stairs or in and out of car seats. I can really break a sweat if I have to carry or hold her for a long period of time.

Miggy: What are the biggest worries you face for your Lily? And to put a different spin on this question, what are some of the triumphs you hope for?

Kym: I think that my biggest worry for Lily is a bit selfish. I want her to be as normal as possible so that she can get the most from life. I would love for her to go to school, have friends, go on dates, go to college, get good grades, and eventually I would love to see her get married one day. The reality is, at this point, I don’t know if that’s even possible. So it’s a little selfish of me because she is already happy and complete. It is just me that is mourning those losses, not her.

I also worry about the older and bigger she gets, the less likely I’ll be able to carry her. I also worry about the fact that if something happened to me and my husband, who would take care of her? Taking care of a cute three-year-old is challenging enough, but what if she is thirty and something happens to us? Each of my sisters SWEAR to me that they would take her. So far, they have assured me that I am worrying for nothing.

Some of the triumphs that I pray daily for Lily are that she will eventually be able to walk and more importantly, talk. I want to KNOW her, have conversations with her, or at the very least, know exactly what she needs. I want exactly what every mother wants for their child. I want her to always be happy.

Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Kym: Oh, I have lots of funny moments with Lily. I consider myself pretty light-hearted (but in a good way) and find humor in lots of little moments throughout the day with her. Just last week in church, a little girl that is about 18-months-old, turned around and pointed at Lily and said, “Look mommy, a baby!” My guess it’s because Lily was blowing strawberries and babbling. I looked at my husband and we just giggled. She was right—Lily was acting just like a baby.

Another funny incident was when I took Lily to my gym’s daycare to drop her off and another little girl, around 7-years-old, turns around, sees Lily and says, “Oh, I love that little girl that doesn’t talk!” I just had to laugh, because she’s right. Lily doesn’t talk. You have to learn to roll with the punches or at the very least, the truth. And learn to laugh!

Photo by Moxie Photography

Miggy: You were a career woman for a lot of years and now you're a stay at home mom to a daughter with special needs no less. There are a lot of people in the world who would consider that a rather large step down. Could you maybe speak to that transition and more importantly to the value of being a mother and what you've learned along the way.

Kym:

First of all, let me tell you that NOTHING in all of my life compares to the intrinsic joy of being a mother. Nothing. I have stayed in 5-star hotels all around the world and rubbed shoulders with many high-powered individuals where it is absolutely thrilling to just sit at their table let alone talk with them for hours about important things, but none of that compares to raising a child of my own. I wish that I could have more kids and almost feel cheated that I didn’t marry until I was 40 and didn’t get to have Lily until I was 41 and a half. However, having said all of this, the transition from career woman to stay-at-home mom was not a smooth one to say the least. Throw a child with a disability into the equation, and it became even rougher. I'll admit, there were some dark days, especially in the beginning, where I wondered if I had made the right decision. I would hear about what my colleagues were up to and where they were traveling, and then I'd look down at this new little person that—in the world’s eyes (and sometimes mine)—was keeping me from being able to interact with the rest of society the way that I used to, and I just didn't know how cut out I was for this whole mothering business. Truthfully, I had lived a very selfish life before, and suddenly, my entire day (and night) completely revolved around this beautiful and helpless little creature. So really the roughest transition was just that of transforming from a self-centered individual into a selfless mommy, and I think that every mother, whether she worked before she had kids or not, can relate to that.

While I do miss many of the social aspects of working, I do not feel like I was a more fulfilled person out in the work force. Being a mom is way more fulfilling for me—I guess because I know how much more important it is than anything I was doing before. Maybe one day when Lily is in school, I’ll go back and work a few days a week. That’s the great thing. I know I always have that choice on the table. But right now, my choice it to stay home with Lily. I feel like I am the one best suited to cater to her special needs. I am her advocate. She NEEDS me, and through the roller coaster ride of being a mom to a special needs child, I have realized that I NEED her. Staying home with Lily is the right choice for me right now, and I am lucky enough to be able to do this at this time in my life and marriage. I love serving my daughter. I know that I will never get these years back, and I want to take full advantage of the time that has been allotted to me to be Lily's mommy. Those big shots can take a rain check.

Miggy: How can people best approach or respond to you and Lily? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Kym: This is a great question. Nobody wants to feel awkward. So I’d rather they just come out and either ask me how Lily is doing or if they don’t know me, ask me why she isn’t walking or talking at her age. Start a dialogue. I am never embarrassed and actually welcome the conversation. I love to talk about Lily and I love it when people are able to step out of their level of comfort and ask. It’s that easy.

Miggy: Finally, what is the biggest lesson you’ve learned since becoming a special needs mom?

Kym: PATIENCE. I could leave it at that, but let me expound. I am a person that survived for a long time on deadlines and moving at a hurried pace. I would get the resolution to a problem quickly and then turn it into magic for others.

With Lily, everything has slowed down. Way down. I have had to relearn how to be patient with Lily and even more so, with myself. I am still learning this daily. I can’t just run out of the house with my three-year-old. Now I have to think, “Bring an extra outfit. Oh, and bring her special cup. Bring this, bring that. Does she need her wheelchair?” The list in my head goes on and on while attempting to “run” out the door.

I also have to be patient with Lily and let her progress at her own speed. While I am a HUGE advocate for all therapies to better her life, I also know that if she isn’t ready, she isn’t going to move forward. Especially at the pace I prefer. This has been a big lesson for me and the learning curve was quite severe at first, but I have learned to adjust and tell myself almost hourly, “Just be patient.” Regardless of everything, regardless of the fact that my little girl may never walk and even harder, may never talk, I have a beautiful child that I am responsible for. I have been entrusted to watch over, nurture and love her. Lily is the most wonderful little human being ever imagined. I couldn’t be more thrilled to call her my daughter.

Photo by Moxie Photography

You can read more about Lily and our family on my blog, mydelayedfairytale.com. I hope it gives you a little laughter and hope. More importantly, I want you to get to know Lily, about her condition, and what and how I learn from her daily.

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I want to thank Kym for sharing her beautiful daughter Lily with us. I love her little "Huck Finn" picture! So adorable. I can really feel Kym's love for Lily through her words, while at the same time appreciating her honesty about the rough road it's been at times. So thank you Kym.

And please--if you are a special needs mom (or dad!) I'd love to have you on our spotlight. Even if you don't have a blog--so please email me at thislittlemiggy at gmail dot com.

Have a great weekend!

35

2012-01-05T19:53:00.002-05:00

It's true. Tomorrow is my birthday. I wasn't planning on saying anything--not because I'm too modest mind you--but because the cleaning and the kids didn't really permit me today. And the fact that I'm 35. That is the first birthday since 17 that has sounded really old to me. Not that there's anything wrong with old, mind you (again). But then I came to the mall tonight to maybe grab a treat, take a pre-birthday break and it turns out I left my wallet at home, but not my iPad...so here I am.

If you'll allow me to be a little (read: a lot) self indulgent on my birthday I'd like to share some little known facts about me. Little known on this blog at least. Last night I got en email from a dear old friend that reminded me about some of our youthful, reckless adventures. Like the time we told our parents we were sleeping over at each others houses so that we then had to find a 3rd yet unknown location in which to sleep for the night. That was a fun little game. We ended up sleeping in our friend Spencer's closet. Believe me when I say this was a really big closet. The next time we pulled this little shenanigan we ended up in sleeping bags on Spencer's front lawn. I still remember his mom walking out to get the paper in the morning with a very confused look on her face. As soon as she walked back inside we threw the sleeping bags back in Spencer's basement window and took our leave. Lucky for us we had a Spencer in our lives.

The other thing she reminded me of was my enduring love for Led Zeppelin. It's true, my first head over heels, posters plastered everywhere, mix tape after mix tape, musical love was Led Zeppelin. My first cd was Zeppelin II. I read books and biographies. I was obsessed. Later in college when I learned the guitar Tangerine was one of the first songs I could play, followed by as many other Zeppelin songs I could figure out.

Admittedly I was a little proud and brazen about my love and knowledge of all things Zeppelin, especially when it came to guys. Silly? Yes, but it made me feel cool. Once in college a guy challenged me to a Zeppelin trivia duel. Apparently he thought I was frontin'. After 15 minutes he humbly conceded that I was in fact superior in all things Zeppelin. Another time some friends and I were hanging out with some guys we didn't really know that well. One of them started playing Babe I'm Gonna Leave You on the guitar. It's a classic, finger picking tune. It wasn't a great rendition but not terrible either, it seemed like he was still learning the song. Anyway, I said something about really liking that song. He sorta sneered and said, Oh really? You know this song?

I wasn't having that shiz.

I said, Yeah I really like Led Zeppelin. But when I play that song I usually play it like this...and I took the guitar out of his hands and played that mother with nary a mistake. I handed back the guitar and said I had to go, but thanks for letting me play and oh let me know if you need any pointers. OK I didn't say that last part, but I do remember his jaw on the floor. The turd.

Ahh, the good ol' days. I'm not exactly sure why the need to share my Zeppelin love with you tonight, but I think it has something to do with my friend's email. An email which prompted me to get the Led out on the way to the mall tonight. An experience which found me enjoying traffic as I sat there singing and screaming duets once again with my beloved Robert Plant, reminding me that I'm either a young 35 or an old 17.

Happy Birthday to me.

- Posted using BlogPress from my iPad

Dipped Chairs

2012-01-04T14:40:00.001-05:00

A side project I did while B was making the new bed were these dipped leg chairs. I first saw this look on some Anthro chairs a few years ago. Recently Jenny of Little Green Notebook did a post about dipped legs and I knew it was something I wanted to try.

As she talks about in her post the idea is that the legs look like they were dipped in paint. Or like my chairs-- it looks like the rest of the chair was dipped in paint while the chair legs remain their natural wood color. I knew that I wanted my chairs to be painted white with natural legs--although just painting the bottom of the chair legs would have been a much faster job.

I started with these thrifted kids chairs and taped the legs off where I didn't want any paint to be. I couldn't decided if I wanted a just a little natural wood showing or a lot, so I did two different lengths. I'm glad I did--it gives some variety while maintaing the overall look.

Next I used some wood putty to fill in any holes or deep scratches. Then I simple sanded it off after the appropriate dry time.

Next, I decided that I wanted to keep the hardware underneath paint free, so I unscrewed each leg and removed the hardware. Not a big deal, and probably not something most chairs will have, but little detail I wanted to give some attention to.

Then I spray painted a nice glossy white. This was done outside (and then in the open garage when it got a little too windy). It took a few coats and even sanding down some drips and reapplying the paint. It took a couple days. Once it was finished I put the hardware back on and reattached the legs. See? I like the hardware unpainted.

Then I untaped and voila!

I think they turned out great!

Right now they're in big sister's new room, but I'm not sure that's where they'll stay. They might just be cute enough for the family room.

A simple and cost effective project, with a strong design impact. Ka-pow!

Bedroom Reveal

2012-01-03T00:01:00.001-05:00

Ta-da!

and...

Ta-da!

So there it is, the finished product and before we go any further yes there is a guard rail so she won't fall off, it's just not in the pictures. Also, I wish I had some before pictures of her bedroom but I don't. We didn't paint anything--the wall was already purple. Actually the whole room was purple when we first moved in, but we toned it down by painting 3 walls white the first week we moved in. The styling is very similar to the original inspiration picture--some of this is on purpose, most of it is not. Here are some poladroids of the process:

The frame

sanding

Rapunzel making a castle with leftover blocks

Undoubtedly the hardest part--mounting the bed to the wall.

The platform is very, very heavy.

Yay! The platform is hung!

(We used steel rope as opposed to regular rope for the supports. Being the safety police I wanted to use the most sturdy product. I still like the look, but in hindsight I'm sure the rope would have been just as good.)

The ladder--this deserves it's own post. Hand made by B, it took as long as the rest of the bed.

It's a piece of art.

Our little model wanted to keep posing and posing...

and posing.

I think she likes it.

(yay!)

A New Year

2012-01-02T00:34:00.000-05:00

I've been in a thinking, introspective mode lately. While not one to throw myself headlong into a list of resolutions that start precisely on January 1st (we can make goals anytime!) I've been especially thoughtful and cognizant of the need for growth and change. Is it probable? We'll see. The bigger question: Is it possible? I think so. If I had to choose one word to sum up my goals for this next year, that word would be strong. Physically, emotionally, mentally, spiritually.
What's your word?

Happy New Year.
We have one more day of vacay around here, so we'll see you Tuesday.

photo via pinterest

Special Needs Spotlight: Sam

2011-12-30T04:57:00.000-05:00

My name is Emalee. I am almost 32 years old. I am a licensed marriage and family therapist. I have been married for almost 11 years to Mike. He is an attorney in Salt Lake City. Our son Sam is two years old. We also have a naughty dog named Atticus. My husband and I went to grad school after we were married, and so we postponed having children. In 2007, we found out that we were pregnant with our first baby. We miscarried that baby right at the end of the first trimester. If you wish, you could read about that experience on Molly Jackson's blog,www.agoodgrief.com. I had the priviledge of being her first guest poster. About a year later, we found out that we were pregnant again, and again toward the end of the first trimester (after I had seen that precious heart beat on two separate occasions), our baby girl died. Four months later, I found out that I was pregnant with Sam. My son has SEVERE food allergies. He has had anaphylaxis 10 times in one year (he is only 2 years old), and has even been hospitalized. He is the light of our lives and is named after the Old Testament prophet, Samuel. His name means, "God Heard Her."

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Miggy: So your son Sam, suffers from very severe food allergies. Although this isn't typically thought of as a special need, it certainly has altered your life and the way you care for your son. So how do you classify your Sam's condition and how do you explain it to other people so they understand the seriousness?

Emalee: I have not really thought about how to classify Sam’s allergies. He certainly does have “special needs.” He is allergic to: eggs, peanuts, tree nuts, wheat, oats, green beans, peas, white potatoes, grapes, bananas, pineapple, coconut, and avocado. No, I am absolutely not kidding!! Think about eliminating all of those foods from your family’s diet. It is a challenge to come up with meals for Sam. I also have to prepare and carry around all of Sam’s meals if we are going anywhere. I just do not trust that other people will not cross-contaminate (see the avocado story below for an example) and even if they were very careful, I do not know if food will be available that Sam can eat. He also wears a medi alert bracelet sometimes (it is really hard to get a 2 year old to wear a bracelet—even if it does have cool animals on it), and I always have to carry Benadryl and two epi pens (which inject epinephrine which is adrenaline). Also, many kids who suffer with food allergies have asthma and eczema. Sam has both. I have to carry an inhaler and have a nebulizer in my home. During the winter, I try to stay in as much as possible because the air in Utah can get very dirty. I have not found anything to manage Sam’s skin really well. Any help I could get with that would be great.

I have had to really advocate for Sam by educating people about food allergies. Many people think about food allergies the same way they think about seasonal allergies. They think he may sneeze a lot or get a runny nose if he ate a peanut. Sam’s food allergies are life-threatening. If he eats the foods to which he is allergic and is left untreated, his throat could swell preventing breathing and/or his blood pressure could drop and he could die.

Miggy: When did you first realize Sam had food allergies? Did you realize how serious it was right away, or did it take some time? And do you know all the foods he is allergic to, or is this list constantly growing?

Emalee: When Sam was six months old, his pediatrician said we could try rice cereal. Sam did not tolerate solid foods well, and the doctor and I thought that he just might not be ready. When he was nine months old, we tried again. He would throw up a lot and cry when we gave him certain solid foods. I thought he probably had acid reflux. We did not try again for a while. His pediatrician and I began to worry that something may be structurally wrong with his stomach or esophagus. She recommended that we think about doing some further tests. We scheduled an appointment with a pediatric gastroenterologist for an endoscopy consult.

Before our appointment with the GI doc, Sam turned one. At his first birthday party, I made him a smash cake. It contained the ingredients a normal cake would, such as eggs and flour. Sam played around in the frosting (made with meringue powder which contains eggs), and began getting welts all over his body. He also began throwing up. I made an appointment the next day to see his doctor and she advised me to see an immunologist (a doctor specializing in asthma, eczema, food allergies, etc.). The immunologist did a scratch test and his back lit up like a Christmas tree. She also did a blood test to confirm. She told me that Sam had severe food allergies. At this point, I did not know how serious Sam’s condition was. I knew theoretically that anaphylaxis could occur and that it could be fatal. My immunologist told me that out of her 300+ patients, only about 3 needed to use their epi pens per year and only 2-3 needed to be hospitalized. I just thought that I would keep certain foods away from Sam and would carry some Benadryl and epi pens. Easy peasy. I did not think I would ever need to use them, nor did I think I would ever be in a life-threatening situation.

The next day (seriously), I was at my mom’s house. Sam found a cashew on the floor and ate it. He got welts all over his body and began to throw up. I just stood in the bathtub holding Sam while he threw up all over me. I was on the phone with the doctor’s office and they told me to give him Benadryl, which I did. In total, Sam threw up over 100 times. I did not know it at the time, but he was in anaphylactic shock. I am extremely lucky that he did not die that day. I made a mistake by relying solely on the advice the pediatrician’s nurse gave me. I do not think that even she understood how serious food allergies could be.

Many people, even a few medical professionals, think you only need to watch for breathing problems with an allergic reaction, and as long as the patient is breathing, everything else will be okay. That is not necessarily the case. Technically, anaphylaxis means that two or more systems (usually gut, skin, and lungs) are being affected. If two or more systems are affected, it means the problem is systemic. It also means that blood pressure can drop which can be fatal. Since the cashew incident I do not hesitate to take him to the emergency room or to his pediatrician’s office. I should have a room named after me because of all of the co-pays I have paid over the last 18 months (totally worth it). It took me one day to understand the seriousness of Sam’s situation.

There is no possible way to test for all the foods to which Sam may have allergies. The list is constantly growing. For example, we did not know he was allergic to avocado. One day, I cut an avocado and did not wash my hands before I handed some cheese to Sam. He ate the cheese and went into anaphylactic shock. He was admitted into the hospital and given epinephrine and steroids. While we were there, a nurse gave him a stuffed dog which he actually named Avocado.

Miggy: Explain how Sam's allergies affect your day-to-day life?

Emalee: Managing Sam’s allergies are relatively easy if I stay home. My home is pretty safe for him. I have no peanuts, tree nuts, or grapes in my home. Ever. I do have foods that Sam cannot eat (bananas, bread, and chocolate) but they are pretty secure, and because Sam is a big-time climber, I have to keep a constant eye on him anyway. My life becomes more difficult when I leave home. Both sets of grandparents try to be very respectful of Sam’s allergies, as do his aunts and uncles. They vacuum when we come over, they try to limit eating to certain rooms in the house, they try to avoid foods that will hurt Sam, and they try to keep a supply of Sam-friendly foods in their houses. Going to birthday parties makes me nervous. Think about what is served at normal birthday parties for kids. Peanut butter sandwiches, cake, ice cream, grape juice, etc. All of these could hurt Sam. My friend and I toured a candy company in the spring. Some of the candy contained nuts. Not only could Sam not eat any of the candy samples handed out to the other kids, but he could not touch anything either. Needless to say, it was not a really fun experience for either of us. Even building gingerbread houses with his cousins was nerve wracking for me. Sam’s house was made of graham crackers (which contain wheat-- one of his less-serious allergies). A lot of the candy that my family purchased contained wheat, potato starch, or was processed in a facility that processes nuts. Sam could not even touch that candy. Sam’s house was decorated only with marshmallows and he could not eat them after because they had touched the graham crackers.

Sam’s allergies have made me realize how much of life revolves around food. We celebrate with food. We console with food. We remember with food. When all of that changes, life changes too.

Miggy: What are the biggest worries you face regarding Sam and his allergies?

Emalee: Without sounding too dramatic, I am worried about Sam dying from anaphylaxis. In all, Sam has had anaphylaxis ten times. He has been hospitalized once. I am worried about what happens when he goes to school, to camp, to a friend’s house, etc. Most deaths from food allergies occur outside the home and many occur during the teenage years. For teenagers, being able to identify with peers is of the upmost importance. If all of Sam’s friends are eating oreo cookies and he is eating carrots, he may decide to join in and eat that oreo. That is a choice that could have dire consequences. This brings me to my next worry which is that Sam will feel left out. We went to his cousin’s birthday party today and all of the other kids were eating cupcakes while Sam ate a rice krispie treat. This is not a big deal right now when he is 2 and loves rice krispies (who doesn’t!), but I worry about what happens when he gets older.

Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to Sam's allergies?

Emalee: This Halloween, my husband and I took Sam to a trunk-or-treat. There were probably 30-40 of our neighbors handing out candy. Almost every single person either brought special Sam-friendly candy, or dug through their buckets looking for something he could eat. I got a little teary thinking about how many of our friends had made special preparations for us and really cared about Sam. At the end of the night, Sam got to keep some of the special, safe candy and turned the rest into the Halloween Fairy for some matchbox cars. This was a great solution for us because Sam still got a special, fun, safe Halloween and we got some peace of mind and did not even have to worry about Sam being hyped up on sugar.

Also, because Sam is my only child, I do not know what it would be like to have a child without food allergies. A few days ago, I dove across a room like a mad woman to yank a cookie away from my 2 year old nephew. Everyone looked at me like I was crazy. I just said, “Sorry. I forgot that other kids can eat these.”

Miggy: What are some of the misconceptions regarding food allergies? How can people best respond to you and Sam when first learning about his allergies?

Emalee: Like I said earlier, I think the biggest misconception is that allergies are not that serious. They are potentially fatal, but they are really manageable if you are careful.

The best way for people to respond to Sam and I is with curiosity, respect, and kindness. I have only had a few bad experiences with others regarding Sam’s allergies. One was when a woman told me that she would not feel comfortable having him over at her house. I really do understand her concerns, but it still hurt my feelings. Sam is an awesome kid and he is worth the effort of vacuuming and securing harmful foods. The other was when the mother of another child in one of Sam’s church classes insisted that her child be allowed to bring grapes to class. This made me angry because I felt like she did not care about my son’s safety. However, when I thought about it, I realized that she just did not know the seriousness of the situation. Once we talked, she was very kind and agreed to leave her grapes at home.

I also wanted to emphasize that I have been extremely lucky. Almost everyone in my life has been so supportive. People have gone out of their way to create a safe environment for Sam. Our church even did a first-aid training especially for him. It was so awesome.

Miggy: Since having Sam and dealing with this new way of life, what is the biggest lesson you've learned?

Emalee: I think that I have learned that we all have hard things to deal with. I have also learned that I can do hard things. People tell me all the time that they could never deal with a child who had such severe food allergies. I want to say, “Sure you can. What other options would you have?” I have also learned that for me, this takes a village. Keeping Sam safe is much easier when I have a lot of help. I have also learned that the love I feel for my son makes up for the loss of nutella. I really love and miss nutella. I still eat it when I am somewhere without Sam, but it makes me feel guilty—kind of like I am cheating on him or something.

Probably the most important lesson I have learned is a lesson I am fortunate to learn over and over again. Harry Stack Sullivan once said, “We are all much more simply human than otherwise.” Sam is a normal 2 year old boy. He loves cars, dogs, other kids, and running around. He may have some unique challenges, but in the end, he wants the same things we all want. He wants to learn, to grow, to live, to be accepted, and to love and be loved. I want that for him too.

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I want to thank Emalee for participating and for sharing her beautiful boy Sam with us...and I love that bit about Nutella. I would miss it too! This definitely opens my eyes to the sobering realities of food allergies. Additionally, this makes me want to be more supportive of families that I may interact with in the future who have children with food allergies.

So thank you Emalee!

Thanks everyone for reading and have a Happy New Year!

Hugs,

Miggy

I Was Gonna Post Today...

2011-12-29T10:47:00.003-05:00

But then we decided to day trip it up to Austin. Yee haw. So I leave you with this cute picture of Lamp doing big eyes. If you say "Big eyes Lamp! Do big eyes..." this is what you get. Super cute if you ask me.

- Posted using BlogPress from my iPhone

Post-Christmas Project

2011-12-26T23:36:00.000-05:00

I want to do a Christmas recap, but now is not the time! B mentioned that since he has almost the whole week off, he needed a project. Hands down, one of my favorite traits about my husband is his ability and affinity towards building, making, and repairing almost anything. Many a time I have thought there is no way you can pull that off and many a time I have happily eaten my words. I'm always happy to be proven wrong when it comes to my husbands crafty skillz. See examples here, here and of course most recently here.

Long story short, Princess Sparkle needs a new bed. She's been in her crib turned toddler bed for far too long she's starting to look like a giant Alice in Wonderland in a much-too-small-bed. We've looked for beds online, but when my husband said project I thought ...of course, we can make a bed. And by we, I mean he.

We found these bed's on Ana's White blog and instantly our project was born.

(This room originates from the lovely little blog, The Bumper Crop.)

I love the rustic yet modern look, which is mostly achieved through the styling. And for our purposes, I also love the extra room that is created underneath the bed. PSP's current room is a lot smaller than her previous one and so we had the idea of a loft bed to create more space from the get-go.

As of tonight the actual hanging platform is finished! Here's a sneak peek.

I'm hoping by the end of the week we'll have a mattress, ladder and a styled bedroom to show off for the internet. I also hope I stop worrying that it's going to fall from all of its plentiful supports. B is confident that this platform is stable and secure, but there is something about a suspended bed that sorta freaks me out. Like these glass balconies from the Sears tower....secure but freaky.

So I'm thinking we might have time for another project...any iders?

Merry Christmas

2011-12-23T15:55:00.000-05:00

From our family to yours...

Merry Christmas Family!

Merry Christmas Friends!

Merry Christmas you wonderful, ol' Building and Loan!

Santa's Workshop

2011-12-23T00:44:00.000-05:00

I've just been finishing up some last minute DIY gifts for the girls. So much fun this Christmas stuff. First, I made this personalized memory game for Sparkle Pants as seen on Say Yes to Hoboken! I love how it turned out! I think she will too....

Next up are these blocks...I'm obsessed with these blocks! I first saw these on etsy via Pinterest and decided to make a set for Lamp.

The possibilities are endless!

If you want to make your own here's what you do:

1) Purchase wooden blocks from craft store. Mine were $1.99 for a set of 6. I bought the last 2 packs, but I will definitely be making more.

2) Sand them--each one, on every side. The etsy blocks were only painted on one side, so they only sanded one side. I painted on all sides, so I sanded all sides. Didn't take that long.

3) Make sure you have an assortment of paint on hand--luckily I had a good stash of Glidden tester size paints from home depot (I stocked up when they were on sale for a dollar) and a few other colors. In the end I used 7 different colors--gold, white, grey, dark purple, light purple, yellow and coral--and I also left some plain wood showing.

4) Then start painting! Once I had my colors I just painted at random--no order, rhyme or reason. I used tape to get the sharp diagonals and clean lines. Even with just 12 blocks this took some time to paint, dry, tape, occasionally re-coat, rinse, wash, repeat. But it was easy to do while watching some shows on Hulu. Also, it was much easier to paint one color on one entire side of the block, and then tape the diagonal and paint the other side. In the end I left some of those sides entirely painted.

Sorry no Special Needs Spotlight again this week! It's the Holidays, it's crazy!

I hope you have a very Merry Christmas!

Love,

Migs

The Time I Met Ryan Gosling

2011-12-21T23:29:00.001-05:00

This has nothing to do with Christmas...but after seeing the above picture for the umpteenth time on pinterest I figured it's time to tell my story.

I think I may have written about this once on this very blog....but seeing how Ryan is everywhere, in every movie and even in all these clever little pictures above....I might as well take this opportunity to shout it from the rooftops...

I met Ryan Gosling.

And in fact, he introduced himself to me. And we shook hands. So there.

But don't get too excited. It's not like we made out or anything...we just met. I was then (and am now) a happily married woman after all.

And now I'll stop wasting time with pointless filler sentences and agitating, annoying alliteration and just tell the story already. The story of how I met Ryan. Gosling. Just so we're clear. Ahem...

So one day, when Miss Sparkle Pants was a baby and we lived in New York City we decided to take a family outing to the Museum of Natural History. I distinctly remember pushing an empty stroller while B was napping a wee Princess Sparkle in the bjorn. We were always overly prepared back then. Anyway, we were in the gift shop when suddenly we saw one of our friends from dental school. His name is Steve and he was a year ahead of B. And to be perfectly honest, he was more of a close acquaintance or a distant friend, you decide. So I saw Steve and promptly took the stroller and started ramming it into the back of his legs saying, excuse me, excuse me...while he stood there politely trying to get out of my way until he finally looked up to see who this crazy person was. When he saw that it was me, we all laughed and commenced chatting. He was standing by himself at the moment, but said he was with his sister and some friends as he gestured over there... And then I saw him. Ryan Gosling. He was just browsing by himself in the museum gift shop. And while we kept talking to Steve, internally I was thinking Did Steve just gesture to him? To Ryan Gosling? Are they friends? Is dental-school-Steve friends with Ryan Gosling, aka Noah from The Notebook? That was my internal monologue, but outside I was cool as a cucumber. To be honest I wasn't one of those crazed Notebook fan girls. Sure I thought he was a good looking guy, but that was about it. It was more just a is Steve really pals with this guy? moment. Although I must admit, if I met Ryan Gosling now...Ryan Gosling of Lars and the Real girl, Crazy, Stupid, Love and every-other-movie-in-Hollywood fame I may have been a bit more star-struck.

So it is at this point that Ryan, seeing us chatting with his buddy Steve, walks up to us, holds out his hand and says, Hi, I'm Ryan. I introduced myself and then we shook hands. And he did the same with B. Then Steve's sister came up and it seems like one other girl who I can't remember and we all started talking. (Now, it's also important to note that I knew my husband had NO idea who this was. It is one of those endearing/annoying qualities about my husband that pop culture is completely lost on him. When watching a movie he is constantly asking me who this or that actor is and I'm like that's Meryl Streep honey. Anyway....) I remember that Sparkle Pants was still sleeping and Ryan asked us her name and when we told him he said he liked that name. I remember they asked us if we were going to a certain exhibit and we joked that we were too poor for them fancy exhibits. We chatted for a good 5 minutes. And then we said our goodbye's and left.

After we walked away I said to B, You don't know who that is do you?
Who? That guy?
Yeah that's Ryan Gosling, he's in that movie The Notebook.
And I think his reaction was something like, Huh.

The next time we saw Steve I asked him about his celebrity friend. Turns out Steve served his mission with Ryan's sister. Yes, Ryan Gosling was raised Mormon. I know, it's like get in line of celebrities who are or who were raised Mormon buddy!

So there it is. The story of the time I met Ryan Gosling.
And the time we shook hands. (You caught that part right?)

No biggie.

The Better Part of a Saturday

2011-12-20T23:53:00.001-05:00

On Friday night, my husband said something about making a scale model gingerbread house of our current mid-century modern abode. I don't even really remember where we were or many details of the conversation, but guess I said something to the effect of, yeah right. Apparantly that was akin to removing my white glove and slapping him in the face. The challenge was on. The challenge I didn't know I had issued, that is.

Saturday morning I found my husband and his 4 year old apprentice outside measuring the perimeter of our house.

Oh candy canes....what have I done?

Luckily we happened to have all the ingredients on hand for gingerbread. Luckily.

At some point I became emotionally invested in this project as well. It was probably when he sent me to the craft store to get some trimmin's. He's so smart that one.

In the end it was a family affair and I do believe we nailed it.

Down to the planter box and porch supports....

...complete with Princess Sparkle's matching graham cracker cottage.

That's a candy cane slide FYI.

To be fair I never doubted that he could do it...I just didn't think he was serious.

He was serious.

Facts:
1. I was the only member of the family to change out of my jammies and shower on Saturday. Coincidentally this also made for a much easier bedtime routine for the girls that evening.
2. It's not actually to scale...it would have only been 2 inches high if it were to scale, so B doubled the height for a better gingerbread house. The only other obvious fabrication is the snow of course.
3. This was our first time ever making a gingerbread house from scratch.
4. If B did it to impress me....mission accomplished. (Wink, wink.) What can I say... a man who can simultaneously bake and craft turns me on.

So that was our Saturday. I have to say, it was kinda nice having nothing better to do than spend an entire day making a gingerbread house replica of our home.

Ho, ho, ho.

Stockings Part 2: For Grams

2011-12-20T00:39:00.000-05:00

My second stocking post is for my Grandma, who also happens to be one of my most loyal readers.

As I was looking through fabric to make new stockings last week I came upon this old suit that once belonged to my Grandma.

As you can see it's a beautiful, albeit worn, suit with gorgeous beaded detailing. The color in these photos is not accurate as it's more of a dark fushia and not a brick red. While I've wanted to make something with this vintage suit for a while I couldn't ever figure out just what to make. I wanted it to be something special that would be around for a long time. Last week I had my ah-ha moment for this suit when I decided to make a stocking.

It turned out great, although I may need to add a lining or some interfacing to the bottom so that it has a little more structure. I'm so glad to have this heirloom stocking as part of our family Christmas tradition. Handmade is one thing, but handmade with a special memory or keepsake attached makes all the difference. I'm going to love pulling this stocking out at Christmas time year after year.

Love you Grams.

Stockings Part 1: Tutorial

2011-12-19T00:50:00.000-05:00

We've been in need of some new Christmas stockings. While Princess Sparkle has a beautiful Anthro-after-Christmas-sale ice skate stocking, B and I were holding onto some homemade stockings I never really loved. Meanwhile, little Lampy didn't even have a stocking at all!

First I decided to wanted to try a knit stocking using some old sweaters. After a trip to Goodwill I came back with a small red sweater. Add to that a soft angora blend white sweater I already had and I got to work! I really like the end result.

Here's a tutorial if you're interested:

1 & 2. Trace a stocking pattern onto some scrap fabric. (Make it longer than you'll want the final stocking...I'm not factoring seam allowance, length wise, into the pattern. Also, I made the mistake of not making the foot part long enough...so make that extra long as well--you'll see how I fix that problem in the end). Then, make the lines on the stocking of how you want the stripes to be divided. Remember the more stripes the more it will shrink due to seam allowances. Also, number each stripe in order so you know how to assemble them back together.

3. Now cut the pattern along the stripes. (It also helped me to write R for red and W for white on each stripe so I knew what color to cut out each stripe).

4. Now law out your pattern pieces on the sweater and cut out 2 pieces for each pattern piece--I just doubled up the sweater to cut both pieces at one time. If your sweater has a "right and wrong" side makes sure you fold your fabric and get one piece cut on the "right" side and one piece cut on the "wrong" side. You need 2 sides of the stocking going in opposite directions, if that makes sense. Also, try to cut all the fabric along the same grain line....I learned that from project runway.

Another tip--for the top of the stocking I wanted a finished look, so I cut the last pieces along the edge of a sweater. Unfortunately since this sweater was rather small (toddler size 3) I didn't have enough for 2 pieces, I had to sew a couple of pieces together to make one of the edges...no biggie.

5. Now assemble your pattern back together in order of stripes (this is where numbering comes in handy).

6. Then take off the pattern piece and lay it to the side. Then take off the top sweater piece and flip it over so you're creating two different sides of the stocking...side by side. (Is this confusing? Look at the pictures).

7. Now starting at the top or the bottom sew the first two stripes together...make sure you put right sides together.

8. Continue with the next stripe again sewing right sides together like this. I used my serger, but you can just use the zig-zag stitch on your sewing machine and it should be just fine.

9. Sew that all the way up....and then do the next side. Now you have 2 stocking pieces!

9. Now placing right sides together pin the pieces in place (lining up the stripes as best as you can on each side) and sew around.

Also, before you finish, grab a piece of sweater or some ribbon and make a loop for your stocking to hang by...make sure this is sandwiched between the stockings with the end hanging out of the seam.

10. Turn inside out and realize it's rather fat and stumpy. Boo!

11. Luckily I made the pattern rather wide and I had plenty of room to work with so I turned the stocking inside out again, and then traced with tailors chalk the outline of my new stocking and simply sewed along that line. I actually did this on both sides, but only took a picture of my outline on one side.

12. Turn inside out again and Voila!

Overall I really like it! While I love the Anthro stocking (middle) I really like the idea of homemade stockings and for the overall look to be eclectic and non-matchy--so I'm digging all the different styles. Although I'm not sure this one is going to be Lamp's stocking forever, it's great for this year!

Any other good stocking tutorials out there? Do you have family traditions when it comes to stockings?

Special Needs Spotlight: Wyatt

2011-12-16T05:06:00.005-05:00

Hi guys. Soooo glad to be back with a new spotlight! I can't tell you how blessed I feel to be doing this series. Truly. As far as this blog is concerned these spotlights are by far the best decision I've ever made. So I find my spotlight participants through various means--some people email me, some people send me other people's info, etc--but this spotlight was someone whose blog I came across a while ago all on my own and have found it to be quite uplifting and inspiring. For some reason I was a little gun shy to email and ask for her participation...I don't know why, maybe a little blog-star-struck?! Anyway, once again I am extremely grateful to Bree and her willingness to share her thoughts as well as her son Wyatt with us. I love this kid, I really do. And I know you will too.

Enjoy Bree and her little Bugg Wyatt!

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My name is Bree. I have my dream job: wife and mother. Brian, my husband, and I are parents to three, soon to be four, children! I believe this life was meant for joy. To live it, to share it. That's why I blog at The Bugg's *Special* Life. While I love celebrating life with cookies, picnics, twirly skirts, and tea parties, it's really the little moments that I've come to cherish. A lesson that our special son, Wyatt the "Bugg" taught me. Bugg was born with an undiagnosed brain abnormality. He is missing his Septum Pellucidum and partially missing the Corpus Callosum. He also has Cortical Vision Impairment. Bugg is five years old, cannot walk, talk, or do anything for himself. He is the healthiest and happiest kid I've ever known!

Miggy: I can't remember when I first came across your blog but I remember being struck with your complete positivity and joy about your little Bugg. I'm assuming there was a time when it wasn't so easy...can you take me back to the day you knew your son was going to have special needs? Do you remember how you felt? How did you get to where you are now--was it gradual or a pretty quick transition? And do you still have down days? (I know that's like 5 questions...sorry!)

Bree: At our 20 week ultrasound appointment, the technician announced, "it's a boy!" A boy, what fun! We already had a girl and it would be a thrill to have a boy. She then said, "I found something" and proceeded to tell us that our baby's brain ventricles were enlarged. My heart felt like it would explode with pain. We were told over and over by a perinatologist that we wouldn't know what Wyatt's diagnosis would be, or what his life would be like until he was born. At birth, he appeared to be okay. He looked so cute and healthy. Wyatt's diagnosis was unclear. He was simply missing a huge section of his brain. Still not knowing what this would mean for him, the waiting game continued. I knew something was very different. I was numb with heartache. It was hard for me to be present and enjoy the life I had. I was always searching for a diagnosis, paranoid to the hilt of what might happen.

As the months passed by, it was clear that Wyatt was very delayed. He wouldn't hold his head up or focus on anything. He wasn't rolling over, reaching for toys, crawling.......I was so crushed and devastated. And then the seizures started. How could I have any joy in my life raising a child with special needs?!!!

As Wyatt got older, it was very obvious that he'd need a wheelchair. I couldn't even imagine putting my child in a wheelchair. I dreaded it. But when that day came, I found myself so overjoyed to see him sitting up and supported in a comfortable chair! It was a wonderful and freeing feeling to love him for who he was. I had finally learned to love him completely. Nothing had changed for him. I had changed. I saw BUGG and not our handicapped child.

Since that day, things got easier and happier and better. I began to see life with new eyes. I started noticing the beautiful details of God's amazing world and the life He had blessed me with. Each day was like a blank page to fill with lots of happy balloons and smiley faces. I found reasons to celebrate the mundane, the monotonous, the seemingly boring everyday rituals. It was my miracle. Sure, I have down days. Like eeeeeeverybody else. And I cope just the same with some tears, cookies, and pajamas!

Miggy: I know your son falls under the "undiagnosed" category, but could you explain how Wyatt’s specific special needs affects your day to day life?

Bree: Wyatt cannot do anything for himself. We dress, feed, change, and do everything for him. He can sit up for a minute or so, and stand supported. He can bat at toys if we give them to him. Bugg eats everything that we feed him, it just has to be pureed since he can't chew. He is in perfect health! And seizure free for almost 2 years (fingers crossed).

Now that I'm pregnant, things are getting very tricky trying to lift him and care for him. I have a very helpful husband, family, and neighbors. He also goes to Kindergarten so we'll work it out.

Miggy: What are the biggest worries you face for Bugg?

Bree: Bugg is perfect. He doesn't have to experience any sorrows or disappointments in this life. I'm so grateful for that. My only worry, really, is that someday I won't be able to lift him. Or care for him. But he is so surrounded by loved ones that I know he'll always have what he needs.

Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Bree: Bugg gets the giggles quite often. In the most random places and times. So what are we supposed to do when he is busting up during church? Laugh with the rest of them is what we do.

Miggy: How can people best approach or respond to Bugg? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Bree: I wish more people, including children, would say "Hi" to Wyatt and ask me about him. I LOVE sharing his joy with others. The best thing a stranger said to me one day at the park was, "Will you tell me about your son?" with a huge and interested smile. She immediately became my kindred friend!

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Bree: I've learned to cherish each of my children for who they are. Each one is so special and brings so much joy in their own way. I've learned to celebrate the grand moments, as well as the small ones.

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Thanks again to Bree and Wyatt! And remember, if you know of someone who would make a great spotlight please email me at thislittlemiggy at gmail dot com. This could also be for adult special needs children as well. (Ahem, Linda?) I need all the help I can get! Thanks and have a great weekend!

More Hair Stuff

2011-12-15T08:40:00.001-05:00

So my other very favorite local purchase in Utah was this little headband. Each one is made from a vintage hankie and they are beautiful! I wish I had bought 2 or 3 more. They are made by a company called La Rose Designs, although their website is a little hard to navigate and I don't see these particular headbands on their site, you can find some other cute hair accessories here. And if you're in Provo stop by the Flower Basket Boutique and pick up your own vintage hankie head band. And then one more for me.

Also, I need to pose a hair question to all you readers out there. Remember how I've been needing to dye my hair because I can no longer continue to pluck out all my grey hairs? Remember? So in Utah I got my hair dyed professionally. Yay! It turned out great. The problem is that it cost a lot. More than I expected. More than my husband wants me to spend. Ever. On anything. So my questions are 1) how much do you pay to get your hair dyed? 2) How often do you pay to get your hair dyed? 3) Do you ever (or always) just do it yourself with dye from the grocery store? Since I'm not a fan of just all over flat color can you just touch up grey's from a box?

Thanks, I know you guys will come through.

Key-Ute

2011-12-13T01:05:00.002-05:00

While in Utah--that's where I was BTW--I had a chance to stop at the Beehive Bazaar to check out some local crafty goodness. Oh those modern Utah women know how to do a craft fair. I fell in love with some super cute stuff and figured I'd pass on the goodies to you since these ladies have blogs/etsy shops! Yay for you!

First up is Jellabee. I saw these hair bows and fell in love. Such a beautiful and chic alternative to the giant flower headband. These are so beautiful and so well made, I couldn't help but purchase a couple of the hair clips for Lampy--although I really wanted a headband I knew she wouldn't have it for a second. Hurry and get your Jellabee hair accessories here before the 16th when she stops all Christmas orders!

Next up is crafter and pal Nicole of Elsa bags. She had some great Christmas decorations going on at this Bazaar and if packing them in a suitcase hadn't been an issue I would have purchased me some of her cute decorations. She also sews up a storm and has lots of cute stuff for the kiddos. Find her shop here and check out her blog here---right now she has a tutorial up on making vintage looking tree decorations! Yay!

Finally (because I have to get to bed and the internet is going soooo slow, but you should really check out all the artists on the Beehive Bazaar website) I'd just like to mention a couple more shops you should check out:

Darlybird--cute earings

Vinylacious--unique vinyl creations, I like the bibs

Trieste Prusso Design--love these Christmas decorations as well

Ok, I'm going to pass out now.

Hugs (not drugs),

Migs

It's On

2011-12-12T04:47:00.002-05:00

We're coming home today! Yay! So technically, as you're reading this I'm probably not even home yet, but with the magic of the internet I can post in the future and it's like your reading it hot off the press...which again, the future, no presses...crazy. But now that we're (almost) home I'm ready for full on Christmas mode. We're talking It's a Wonderful Life watchin', cookie bakin', fake snow makin', Christmas story readin', Santa Clause playin' Christmas! I don't even care if Texas tries to throw me off with some 80 degree weather...my head is in the game. The past couple of days in my downtime I've been reading, researching, planning and plotting everything from gifts and stocking suffers to food and decor. I'll try to post some of my favorite finds this week. Any must-have items I should know about?

P.S. I don't know if you remember but a couple months ago I printed off some of our bat cave pictures for Halloween decor and now I really like the idea of using photographs as part of my holiday decorating. I would love to purchase a print like the one above to help facilitate the White Christmas feeling I'm so used to. Purchase photo here.

Checking In

2011-12-09T04:46:00.000-05:00

obligatory cousins-in-the-bathtub picture

We've been having a great time so far on vacay. I've seen family and friends, the local sights and I've eaten my way through town. Not bad I say. As mentioned earlier I don't have a special needs spotlight for today, however I thought I'd share a link that's sure to open your eyes, not to mention your tear ducts. It's a beautiful and uplifting blog which (much like my own blog) isn't dedicated entirely to their special needs daughter, but certainly does discuss her and their experience quite a bit. There's a good chance you're already familiar with Kelly Hampton---writer and photographer extraordinaire--but if not get the Kleenex out and read the beautiful birth story of her daughter Nella Cordelia here. She'll break and mend your heart in one fell swoop.

Have a great weekend!

Early Christmas Vacay

2011-12-06T05:08:00.002-05:00

My mom has a knack for picking out holiday decorations that I love, like these vintage trees above. Bright teal scarves with rabbit fur balls around the edge? Not so much. But holiday decorations... she nails it. (We can laugh about that now right mom?)

Welp, we're headed out of town for a not quite Thanksgiving, not quite Christmas visit to see family and friends...and I think I'm going to love this in between vacation! I'll try to post here and there but otherwise I'll see you next week! (Sadly this also means the spotlight won't be running this week either--but I've got a great one lined up the next week, so stay tuned!)

Sewing Frenzy

2011-12-04T20:52:00.002-05:00

I did it! I finished the Toddler Boy Messenger Bags and they are now available in the shop! I wanted to get these done in plenty of time for Christmas and after an all day sewing frenzy I finally got these guys finished. I actually redesigned the dimensions a little and even made a couple in a beautiful natural linen...and have to say I really like how they turned out! I will be out of town for about a week, but if you order now I'll be able to get them shipped by the 13th or 14th--in plenty of time for Christmas!

Check them out here!

Special Needs Spotlight: Presley

2011-12-02T08:11:00.000-05:00

I feel like such a lucky Momma! I have 2 beautiful girls, Presley and Charlotte, who my hubby and I love sooo much! Presley has was born with SMARD, though she was not diagnosed until she was 2 years old, and by that time we were pregnant with Charlotte. Although Charlotte does not have SMARD, it is a 1 in 4 chance that each baby my hubby and I have will have this disease. Here is a little more about Presley.

Presley turned 3 years old in July. She is a very happy, spunky, silly little girly girl! She is so smart and so patient and the best big sister! She inspires so many who know her because of her strong spirit and silly happy outlook on life! We did not know anything was wrong with Presley til she was 6 months when we discovered she had weak hands and feet. We had done lots of genetic testing but never could find what she had. Strong and determined, Presley hit all of her milestones-though she worked harder than most to get there! She was even walking with a walker and starting to take steps on her own! When Presley was 19 months old she got sick with RSV and went to the hospital where things got bad fast. To make a really long and awful story short, we spent from February to May in Primary Children’s trying to get her breathing right again. In April we discovered her diaphragm was paralyzed and we ended up doing g-tube surgery, got her trached, and scoliosis surgery all in a months time. She smiled through it all though! She gives me my strength! After her back surgery she had a hard time standing and since then she has been in a wheelchair. She now drives her very own pink powerchair everywhere and is loving it!! She has to be hooked up to a ventilator 24/7, and uses a cough assist machine and a suction machine to keep her lungs clear since she cannot cough anymore. She also is fed by a g-tube now. I hate what SMARD has taken from her. She tells me all the time, "Presley walk all by-self.” Breaks my heart. I want so bad for there to be a cure or treatment in her lifetime. This disease is progressive and it makes my heart ache to think of her getting weaker over time. I want her to get stronger! I want her to breathe again! And eat again! And walk again! I never want anyone to have to go through this with their child. I never want anyone else to lose their children to this awful disease. I have hope that we will see a treatment one day! But even still, Presley is just a normal little girl who breathes a little different! :) She is our inspiration! Both of our girls are just the light of our lives and we feel so blessed. To read more about Presley you can visit 2pinkbutterflies.blogspot.com.

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Miggy: Like a lot of the kiddo's I've spotlighted, your daughter appeared to be healthy for a long time, do you remember the day you realized she would now be considered "special needs?" Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Mindy: I think a lot of people go through a mourning phase. I was no exception. I cried and cried when we realized this was not a simple fix. When we first found out there was something wrong at about 6 months old they still did not know "what" it was. They told me it could be as simple as weak feet and hands or could be as severe as losing the ability to swallow and going blind or organs failing…to maybe cognitive stuff...to maybe she would not live to be over a year. I was devastated. I prayed the hardest I have ever prayed in my life, begging and pleading with Heavenly Father to please, please just let me raise her. I told Him I did not care what challenges lied ahead as long as she was happy and with me. It may sound selfish that I wanted her with me so bad, but I just had this feeling that she would still be the happiest little girl and she had such a sweet and strong spirit. I knew she would teach me more than I could ever teach her. So I guess when I knew the future was undetermined I tried not to be disappointed or mad about it. I was going to be content as long as she was with me and happy, no matter what. When we found out it was SMARD at 2 years old and she would not breath without a trach and vent and that her muscles would continue to get more and more weak as she grew older I did the mourning thing all over again. I was mad, sad, numb, grateful and content, then mad again only worse. I cried A LOT. It didn’t help I was hormonal and pregnant with my 2nd at the time. Looking back I understand why I went through those phases. I still do have days where reality hits. But I realize more and more as she gets older that I have to be strong for her and that positive is the only thing I want her to see. At first it was a challenge to smile all the time. Now its become a habit and I am genuinely so happy and grateful that Heavenly Father answered the prayer I said 2 1/2 years ago when the future was so undetermined. So grateful. She is the biggest blessing to our family. Always has been, always will be.

Miggy: Explain how Presley's specific special need affects your day to day life?

Mindy: Life has changed a lot!!! Since being trach/vented we don't go anywhere from Nov-April to avoid respiratory illnesses. We are home bound during those months. When summer does come I cannot go anywhere alone with my girls. I have to have a nurse or my husband to drive while I sit in the back with Presley so I can suction her when needed. In fact I still have not been able to even go to the park alone. I need someone with me anytime we go anywhere. We have nurses that are at our house all night long 6 nights a week watching her while we get sleep. One night a week I stay up with her myself and it is pretty exhausting. She has feedings that need to start on time every 3 1/2 hours. Her sat. monitor needs to be hooked up all the time and probe changed every 2 hours. I need to watch her ALL the time because she chokes and needs suction, or coughs at any given moment. Her trach can pop out very easily which results in her turning blue and collapsing lungs immediately. She has a lot of equipment. It was overwhelming in the beginning but it has become the norm for us, but we still do have daily reminders she is fragile and we cannot take our eyes off her. I carry a video monitor that watches her sats. and face even when I go start laundry or go to the restroom.

Miggy: What are the biggest worries you face for your Presley?

Mindy: I worry constantly...about her trach popping out and me not noticing until its too late, about going to bed at night and trusting nurses to watch my daughter, about equipment failing or battery backups failing, about her getting a plug that I can not get out that would block her airway. I worry about her breathing all the time since its her equipment keeping her breathing. I also just want her to be happy--I want to make sure I am being a good mom to her and that she is confidant and smiling.

Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Mindy: One time we were at the aquarium Presley was throwing a major tantrum cause she did not want to look at the penguins anymore, she wanted to see the snakes! I was talking to some random lady who seemed interested in Pres and while Presley was throwing her huge fit and trying to drive off the lady asked me, "What’s wrong with her?" I said, " Oh my, just having a 3 year old fit hahaaa , and trying to drive off!" The woman looked at me strangely and I could tell she was confused. My mom was with me and said, "I think she is asking her condition..." OOOOHHHHHH!!!!! I am so used to her trach and machines and chair that that’s almost the last thing I had expected her to be asking, haha. I then tried to tell her about SMARD, but Presley took off in her chair on speed 3 so I had to run after her! I get little things like that a lot. Kids will ask, "What’s wrong with her?" And I look at Presley who appears to be happy and content and say, "Nothing? She seems happy to me....." I know what they mean but sometimes its nice to not get into it and just keep going. :)

Miggy: How can people best approach or respond to your Presley? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Mindy: Honestly I do not get offended easily. I know people for the most part do not mean to say the "wrong" things, and I never want to show Presley how to respond to questions or looks in the wrong way. The worst for me is when children over 8 or so say things to her or me that can sound rude because of their age they are not very tactful, haha! I have heard "She is dying," and "Ewe, what is wrong with her???" And thats when I get upset. I don’t show it, but inside I’m fuming and thinking, "I would like to talk to your parents!" Haha. I know its just kids for ya though. I think the best advice I have is to talk to your children about special needs. And how its not gross or weird or awkward. Its just another kid who breaths different, walks different, talks different, whatever the condition is. Use a situation like seeing a girl like Presley driving her chair with a trach to say to your kids, "Look at that beautiful girl and how amazing she is at driving that chair!" You don’t have to get into some whole spiel, just teach them that they are beautiful and talented and a child of God too. :)

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Mindy: Not to judge others. I used to think, "I would never do this or that” or “I could never do this or that" and wow, now I know that unless you are in those shoes you cannot judge. I’m not just saying about parents with special needs kids. I’m talking anyone, in any situation. Anywhere. We cannot judge. You really never know what someone is going through.

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Is that Presley a beauty or what? Another amazing and inspiring family. What I love and admire most about Mindy is her spunk and positive attitude. I just want to thank Mindy for sharing her beautiful daughter and your happy life with us! Again, please head over to her blog for more info on SMARD and or Presley.

Random Stuff

2011-12-01T09:50:00.001-05:00

These days I can't go anywhere without the 3 B's, as pictured above. Baby, blanky and bear--which is what we call her pacifier with the giant panda attached to it. When I feed her in the morning or before nap it's baby! baby! baby! which means I now have to juggle 2 babies during feeding time. The slight inconvenience is easily eclipsed by the sweetness of it all...Princess Sparkle wasn't attached to anything as a baby. No lovie, no blankie, no dolly. So it's cute to see Lamp have her little attachments and how much they mean to her.

I got the most lovely email the other day. A woman named Becki emailed to let me know I had been nominated on her blog for a gratitude giveaway she was hosting. The person who nominated me, Heidi, has never met me but through my blog, particularly in regards to Lamp and my special needs spotlight, she has been helped due to her own daughters special needs. Becki wanted to send me the email Heidi had written about me because she thought it was so kind and wonderful. Then she told me she had chosen me as the winner--a $100 gift certificate to her shop! Amazing right? Serious hair brushing moment...I felt so humbled, appreciated, loved and encouraged all at the same time. Anyway, if you have a chance you should head on over to Whippy Cake to check out her shop! So many beautiful headpieces and accessories I don't even know where to start. Let me know your favorites! Thanks again Becki and Heidi!

I have so many things on my to-do list these days but NO motivation. It's been pretty hustle-bustle around here so come evening time I just want to sit on the couch with a bowl of ice cream and relax. I don't even have any Christmas decorations up yet...partly because I wanted to paint the mantle first....it's orange....oh bother. I even have the beginnings of some more toddler messenger bags in the works that I was hoping to get done before Christmas...but I'm losing steam. Any ideer's to get my motivation back? And by all means, if you'd like a toddler messenger bag before Christmas let me know so I can get. it. together.

Alright kids, I'll see you here tomorrow for another amazing Special Needs Spotlight.

Camo

2011-11-30T05:30:00.002-05:00

Notice anything interesting about this picture?

(besides the bad lighting?)

How about now?

Yes that would be Princess Sparkle in head-to-toe black camouflage. About a week ago she went in her room, changed into all black--black tights over the head being the pièce de résistance--and waited until we noticed her. Which could have been forever since she was camouflaged right? I haven't laughed that hard in a long time.

This, in a nutshell, is why I love having kids.

Modern Trees

2011-11-29T08:15:00.000-05:00

Remember this post I did a while back about these beautiful modern family history charts? Well you're in luck because designer Mike Allen not only has a website up featuring all the different versions of his amazing family history charts, but they're holding their own Christmas sale and you can get them for a great deal. Go to ModernTrees.com for these amazing family history charts and tell 'em Miggy sent you!

(Just kidding, that actually won't do anything for you but haven't you always wanted to say that? No? Just me?)

Thanksgiving Recap

2011-11-28T14:09:00.000-05:00

Hi friends. First, let me just say thank you for all your sweet notes on my last post. I can't tell you how much it warms my heart to read love notes to Lamp and our family from far and wide...an unexpected Thanksgiving treat. Second, our weekend was great. Food, family and fun...what more could you want? Here is a quick look:

extreme hide and seek

hitching a ride from grandma

love her

foot rubs from grandma

The feast

Thanksgiving 2011:

Mission Accomplished

Giving Thanks

2011-11-23T00:43:00.001-05:00

I have a lot to be thankful for, my family being at the forefront. My wonderful husband and my sweet little girls really make my life what it is...which is beautiful. I also have wonderful extended family (Hi Grams!), great friends, a nice and comfortable home, food on the table and interests and abilities that enrich my life. I live in a great country. I'm grateful for my God and my Savior Jesus Christ. As a kid the actual tradition and event of Thanksgiving was always a little on the silly side as far as Holidays go--you just eat a really nice meal? As an adult the idea behind an entire holiday being centered on an such an enobling virtue as gratitude, is quite refreshing in it's simplicity and importance. All this to say I'm really looking forward to Thanksgiving and I have a lot to be grateful for.

I also thought it would be fun to highlight this little video of something I've been specifically thankful for these past couple of weeks, and I thought you guys would want to see this cute little scoot in action. I shot this on my new iphone with the 8mm app so it has that old school home movie feel (I love it!). Please be patient as the scoot doesn't make an appearance until about 25 seconds in. And also, please notice when she stops about half way to figure out if she really wants to come to me or go back to her new favorite stacking toy. Kills me.
Enjoy!

Happy Thanksgiving!

See you next week!

Look Who Got an Iphone

2011-11-22T11:00:00.000-05:00

I'm still trying to figure it out, but you better believe instragram was the first app I downloaded. My step dad upgraded and gave me his old iphone which is in *mint* condition. Me likey.

Thanks Papa.

Humble Pie

2011-11-21T00:15:00.000-05:00

I used to be so smug about babies and sleep. Princess Sparkle pants was a colicky baby who had some terrible sleep habits and underwent some serious sleep training. But once we had it down...we had it down. 12-13 hours at night, plus naps like clockwork. Once I tamed that baby I thought I could sleep train anything...colicky triplets with strep throat? A baby bull with rabies? Baby great white sharks in blood infused waters? BAM! Sleep trained! 3 hours of crying? A'int no match for me. Just darken the room a little, swaddle tight and get 'em to bed early with a dash of tears. Done and done!

I've officially let go. Lamp is a complete maverick. Well I shouldn't say complete, but her sleep patterns have no rhyme or reason. She still goes to bed pretty early (knock on wood) but it's her wake up time that's killing me. For a long time she woke between 5 and 6 to nurse and would then go back to sleep until around 7. Well I was getting sick of that last feed...especially since she has a g-tube and gets fed at night! (BTW, we're starting to ween her off her feeds...she's down to just a fraction of her typical amount). Well once I messed with that, it's all gone to pot. We let her cry it out in the morning. And for about 2 months we were just torturing ourselves. She also went through a 2 week bout of random waking up and crying at all hours of the night--sometimes being up for 1-2 hours at a time. When we got through that I decided I would rather get up and feed her at 5 and get back to sleep than be up at 5 to listening to a baby cry. Welllllll, she doesn't really want to go back to sleep now when that happens. And even as I write this (Sunday night) she has started crying off and on for the past hour, which means we're probably in for a bumpy night.

What I do feel like I've figured out is that Lamp is among what I imagine is a small percentage of babies that doesn't respond well to crying it out. Although she did when she was younger, so go figure. Also it's harder to be consistent when you've also got a 4 year old to think about, because if her sister is up at 5am crying, big sister wakes up too. But still, I'm not so sure consistency is the problem. Deep down, I really think she needs us in a different way than big sister did. I remember at just a few weeks old on my father-in-law, aka the baby whisperer, stroking her foot while she fell asleep saying, she just likes to know you're there. In a nutshell, that's Lamp.

So here I am. A newer, humbler more sleep deprived mama. I've stopped thumbing though Healthy Sleep Habits and am now considering a book with a milder approach (although I still love HSH for it's many points of wisdom)--I hear good things about Good Night, Sleep Tight.

But the point is, I used to think that in a head to head sleep battle I would win every time... now I know different. In the process I have stopped resisting so much, I have stopped letting it control my life and my mood (mostly) and I have even stopped judging you other mothers I used to consider inferior sleep trainers. Yep. I said it. We are now comrades in the war against a good nights sleep and now I can say... I get it. Sometimes it's really not you, it's them.

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Special Needs Spotlight: Cole

2011-11-18T05:08:00.005-05:00

Hi! I am this cute little boy’s mommy! I want to introduce you to him, his name is Cole and he just turned 3 years old. Cole was born a very happy and healthy baby. Cole is our first (and only) child. Cole was starting to wave, babble and say “mama” & “dada”...up till 10 months old when he suddenly developed "A-tonic drop seizures" and "Absent Seizures". His world suddenly changed as he had 100's of seizures a day. After he started having seizures, his brain couldn't keep up and was diagnosed with a severe brain disorder called "Epileptic Encephalopathy" and started regressing developmentally. He stopped pointing, waving and saying mama & dada. Cole is cognitively a 10 month old and a 22-month-old motor wise. He was on the Ketogenic Diet in 2010-2011; it helped 75% of his seizures. He was on it for 1 year...but ALL of the seizures came back in FULL FORCE. He was also diagnosed with "Irretractable Epilepsy" meaning that his seizures are being treated, but they aren't stopping. Doctors called him a "complicated case” and didn’t know how to help him. On February 22, 2011 we took Cole to the Cleveland Clinic in Ohio and neurologist Dr. Deepak Lachhwani found that his left temporal & occipital lobes were malformed aka “Cortical Dysplasia”. They found a 3rd seizure type as well, "Infantile Spasms" aka "West Syndrome" which are HORRIBLE seizures with a poor prognosis on development. On September 1, 2011 Cole had brain surgery to remove the Left Temporal and Occipital Lobes by the BEST neurosurgeon, Dr. William Bingaman. Cole had 150+ seizures a day for 2 straight years. Since his surgery, we haven't seen any "S's". It’s only been 3 months. We aren’t out of the woods until he hits 6 years of being seizure free. But so far…we are VERY optimistic! …And, Cole started babbling “mama” & “dada” 2 months after surgery!

Miggy: Can you take me back to the day you knew something was not right with Cole? At what point were your fears confirmed and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Cole’s Mommy: Yes, the day he started seizing it was very subtle, his eye’s rolled back in his head…almost like he was just sleepy. I thought it was odd, but he seemed fine…2 days later his seizures were OUT OF CONTROL. They weren’t the normal “grand mal seizures” where someone shakes violently…they were head drops and the infantile spasms (which are very damaging to the brain, even though they may look harmless on the outside). The day we found out that they were in-deed seizures, my mind went to the worst-case scenario, that maybe he had a tumor or something that was going to take him away from us. We sat on the couch for 1 week and cried & cried. I was scared for my baby.

Miggy: I admit that when I first think of Epilepsy I don't think of it as being "special needs" per se. I just thought that epilepsy meant having a few seizures and taking medication to manage that...obviously I was wrong. Are there different degrees of epilepsy, much like autism, where some kids are much more severe than others?

Some people respond very well to medication. However, when someone has Intractable Epilepsy, that is where it becomes a night and day difference between the two, especially little children whose brains haven’t developed prior to the start of seizures. Epilepsy is also VERY different for EACH person based on why they have seizures and what type. For example, the Infantile Spasms look completely harmless on the out side…and the name doesn’t sound that bad either. But this seizure type is a “catastrophic childhood epilepsy” and is also categorized as a “rare disease” because of the difficulty in controlling seizures as well as the child becoming mentally handicapped.…so yes, there are different degrees.

Miggy: Explain how Cole’s specific special need affects your day-to-day life? I know Cole recently had major surgery as well, can you tell us about that and how that has or will affect his development and growth?

Cole’s Mommy: When Cole started having seizures, we never left the house…everything and anything was triggering them- like the light, loud noises, if he didn’t get enough sleep, different patterns…I mean EVERYTHING! But, after he went on the Keto-genic diet, he was so much better (only seizing about 15 times a day) but that diet was the hardest thing we’ve ever had to do as far as treatment…you can Google it…you will probably think it’s a diet from “you know where”! …so again, we never left the house! But, since Cole’s surgery, we can’t be any happier with the results. I feel like the Lord lead us to the Cleveland Clinic & to those doctors so that Cole could get the help he needed. It’s truly amazing how everything has worked out! He still has a long road a head of him…of course we are hoping for the best, but we are also realistic in knowing that Cole won’t be at the same level as his peers. We are hoping that one day he will be able to talk J

Miggy: What are the biggest worries you face for Cole?

Cole’s Mommy: I worry about his long term health care…lets be honest, with the way the economy is going, health care continues to increase…and Cleveland is on the other side of the country for us, so the long term care kinda freaks me out. I am a planner, and this is not what I had planned…but I’m starting to figure out that I can plan all I want…but what I plan is not going to happen! I also worry that he won’t talk…I think (besides not knowing what was wrong with him) the talking part is something I will always hope for.

Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations? (For example, I never imagined myself saying things like "Did we leave the baby's arm at home? Oh shoot...")

Cole’s Mommy: Oh wow, well, I think yours wins! My husband was singing along to “The Wizard of Oz”, when the tin man is singing and he says “…if I only had a brain”, I told him maybe he shouldn’t sing that since Cole is missing part of his.

Miggy: How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Cole’s Mommy: Most people are pretty understanding towards Cole if they can tell there is something wrong with him (like when he used to wear his helmet)…but now that his scar is covered by his hair and he no longer needs his helmet, he looks like a perfectly normal child…and it’s actually harder when they don’t know something is wrong with him. People can be rude in that sense, when you get weird looks from them or if he runs in their way etc. So, I guess it would be nice if people were nicer not just because he is “special needs.”

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Cole’s Mommy: Not all doctors are the same and not all hospitals are the same either. I’ve come to find out that “mothers instinct” is #1 and then finding the best dr for your child is #2.

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I just want to thank Cole's Mom for participating in our spotlight today. Personally I found this extremely enlightening as I didn't know epilepsy could be so life altering--did you? And while sometimes I write an intro, I thought Cole's picture spoke more than what I could ever convey. What a beautiful, amazing and awe-inspiring picture right? Once again I like to think of Cole as one of my kids...my heart fills with love for these kiddos and Cole is no exception. Feel free to read more about Cole and his family at their blog Beating Epilepsy. Thanks again and please if you know anyone who would like to participate email me at thislittlemiggy at gmail dot com.

The Law of Tithing and Motherhood

2011-11-16T09:16:00.001-05:00

View from the kitchen window...so glad I've got a husband who likes spending time with his kids when he gets home.

For you non Mormons out there, I've included some explanations and links at the bottom of the post.

I had a realization last week: I would never look at my tithing slip and compare it to anyone else's tithing slip in church. And if for some reason I did come across a rogue tithing slip (a tithing slip being a piece of paper detailing your monetary contribution for recording purposes), I would never use those numbers to somehow rate which of us was a better person. My (OK our) 10 percent is not the same as someone else's 10 percent when it comes down to actual numbers. But whether my 10 percent is meager or kingly in comparison, our contribution is counted the same in the eyes of the Lord. The idea of comparing how much tithing we pay to somehow compute individual righteousness is absurd.

So why, oh WHY, do I try to make these same comparisons in life, specifically in motherhood and think that the result would be any less ridiculous? For some reason knowing that there are woman who are pregnant with their 3rd child, when their oldest is even younger than Princess Sparkle Pants makes me feel like I'm behind, or at least like I need to explain myself. And for some reason when I've been a despicable mother who lost her temper, I start cataloging in my head all my mom friends and figuring out who definitely never yells at their kids, and who is more patient and kind and why can't I be more like them...blah, blah, blah. As if that's even accurate.

This isn't coming completely out of left field...See Princess Sparkle has finally outgrown her naps, but being a mom who still treasures these daily breaks and reprieves from my lovely yet demanding children I still make her have quiet time in her room while Lamp naps. I started to feel a gentle, divine nudging that instead of sending her to her room for quiet time, I needed to start spending that time with her. But I didn't want to make that sacrifice and give up my precious me time! And then the comparisons start... See there was this blog I read for a while written by an amazing mother of 11 who was such a great mom her kids urged her to write a blog about parenting and motherhood. Some of you may know what blog I'm talking about. Anyway, it was a wonderful, uplifting and encouraging blog. She gave great advice. Among the advice she also talked about her experience as a mom. The woman had 11 kids and talked about how she never really needed a break from them, she was born to do this. She didn't let babies cry in the middle of the night and just felt they needed to be held. Even her discipline style was one of love and nurturing rather than strict rules and punishments. As much as I respected her advice and admired the type of mother she was I came to the realization that we were very different creatures. I only had 2 kids and I need breaks--daily! My kids go to bed early for various reasons, but one of them is so I can have "me" time. And even then I still need time away from my precious babies. And babies crying in the night? Don't get me started... I finally had to conclude that her "10 percent" and my "10 percent" were very different from an outsiders perspective.

When I think about the story of the Widow's mite in the bible I'm reminded of this same principle, but for the first time finding a different application. The widow has nothing, she is so poor her contribution is worth less than the value of a penny. But because she gives everything she has, she is giving so much more than the wealthy men giving much more sizable donations. I don't want to make excuses for myself when it comes to mothering--there are definitely things I need to improve and sacrifices that I need to make because remember the widow gave all that she had, thus the reason I have started spending quiet time with PSP. But when I've done my best and appropriately sacrificed I am no longer going to compare my 10 percent to another mothers 10 percent.

I'm sure I'm not alone in this little comparison game...I'd love to hear your thoughts and lessons learned in regards to comparing ourselves, our lives, to others.

Tithing is the basic contribution by which Latter-Day Saints fund the activities of the Church. By revelation to the Prophet Joseph Smith, the Lord stated that members should pay "one-tenth of all their interest [increase] annually; and this shall be a standing law unto them forever." (D&C 119:4). See Encyclopedia of Mormonism.

Account of the Widow's Mite: Mark 12: 41-44

Children's Primary lesson the the Widow's Mite.

Moments

2011-11-15T07:49:00.000-05:00

B and I had fallen asleep during Lamps nap on Sunday. When I woke and found it a little too quiet I had to investigate. I peeked in on this one and realized we achieved the rare family nap! It's not often that we find the 4 year old napping these days--which is good, naps make for terrible bedtimes!--but to see her dressed up from head to toe in Snow White and passed out on like a little princess, I had to snap a photo.

Yesterday we were in a rush to get out the door, but Lamp was really needing a bath. But I know I didn't have time to fill up the tub, and scrub her down, etc. Then it hit me that while not many 16 month olds can bathe in a small sink, this one sure can! Quick sink bath = cute photo op.

...The joy of motherhood comes in moments. There will be hard times and frustrating times. But amid the challenges, there are shining moments of joy and satisfaction.

--M. Russel Ballard

Trying to keep this in mind lately.

Read the rest of this great talk on motherhood here.

Weekend Fun and Goals

2011-11-14T08:16:00.000-05:00

We had a fun weekend up at a cabin near a lake. While we didn't do any actual camping since we slept in beds in a heated cabin--there was fishing, a fire, roasting marshmallows and s'mores. I used to think I knew how to make a s'more...I have been officially educated by that brilliant husband of mine. And while I don't particularly love marshmallows on their own, I love a good roasted marshmallow. There is something about a roasted 'mallow. Our fishing adventures were less exciting and prosperous. We certainly had fun trying, but after a broken fishing pole we had to admit defeat and pack it up. We also forgot our camera on this trip...and then shrugged our shoulders and decided it was better to live and enjoy in the moment than worry about capturing the perfect shot. As much as I love it, sometimes technology gets in the way of actual living. This getaway was just what my husband needed. He loves camping and I do too, but not pregnant or with small children. I know some of you out there do camp with babies...how do you do it?

Also, after last week I made another goal. I'm going to go without sweets until Thanksgiving. This is more about discipline and freedom than about numbers on a scale. Sometimes I just need to know I can do it hard things.

I've been thinking a lot about change lately. The ability to change. I admit there is a part of me that is jaded and has a hard time believing it's really, truly possible to change who we intrinsically are. I've been wanting to make some changes lately but have been coming face to face with my own doubts and fears regarding this process and it's possibility to begin with. I find that when confronted with the desire to change, starting with physical changes seems to be a good way to start--thus no sugar. Also more exercise and earlier bedtimes. Something that is hard, but do-able. The taste of a little success seems to bring about the promise of more success.

Sorry to get all heavy on you on a Monday morning...but if you're up for a good read check this out, inspirational and part of the catalyst that's got me thinking about ch-ch-ch-changes.

Happy Monday.

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Special Needs Spotlight: Isabel

2011-11-11T05:42:00.001-05:00

Hey ya'll....it's Miggy. Do me a favor before you read this next spotlight. If you're a parent I want you to imagine one of your children in a wheelchair (if you're not a parent, imagine a niece or nephew, etc..). Imagine your child being completely immobile, unable to eat or breath on their own, wheelchair dependent and completely dependent on you for all their wants and needs. Please, just imagine your child in that wheelchair. Picture it. Feel it. It's the same child you know now, the same smart, funny, brilliant child you love. If you ever wonder how parents of special needs children "do it" just think of your own child in that same situation and know this, you would do it too. Not that it would be easy and not that you wouldn't have difficult days or even difficult years, but you would do it too. I'm not trying to minimize the hard work that families like Isabel's do to take care of their kiddo's, but I just want to impress upon you that it's the same love that motivates you to do the things you do for your children. Now get ready to be inspired...

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Isabel was born in 2005 and appeared to be a healthy baby girl. She was our first child. She was diagnosed at 4 months old with a genetic neuromuscular disease called Spinal Muscular Atrophy (SMA). SMA is the number one genetic killer of children under two. 90% of babies with type 1 SMA (the most severe form) die before they are 2 years old. Isabel has type 1 and we are so blessed to still have her with us today. She will turn 6 this year! SMA causes progressive muscle weakness in all voluntary muscles. Isabel could only briefly hold her head up on her own and was never able to sit, roll over, kick her legs, or lift her arms above her head. SMA also affects the muscles needed for swallowing and breathing. We are so lucky to have Isabel in our lives! She has an amazing spirit and even though she has been through so much I know she truly enjoys life and is happy.

Miggy: Since your daughter was born "healthy" can you take me back to the day you actually found out she was in fact going to be "special needs" or in other words a lot less typical and independent than your originally thought? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Erin: I’m actually trying to remember when I first realized Isabel would have special needs. When she was diagnosed, we learned that she had a terminal disease and would probably die within the next year. We didn’t even consider what special needs she might have because obviously we were just in pain and shock at being told her prognosis was terminal. Her dad and I both had an extremely hard time after her diagnosis, I literally cried myself to sleep every single night for weeks. She had her trach surgery at 6 months old, and we were able to take her home after being in the PICU for 6 weeks. That’s probably the first time I realized she was going to be a special needs child. It was almost like being a new mom all over again. I had to learn how to take care of her with all of her equipment (feeding pump, suction machine, ventilator, pulse oximeter, cough assist machine, and chest percussor) and finds ways to keep her entertained as she couldn’t play with toys like a typical baby because of her muscle weakness. This might sound weird, but I’m actually grateful that Isabel has special needs because it means we still have her in our lives. As she gets older it’s both easier and harder to deal with her special needs. It’s easier because we’ve had 5 years to get used to the changes and it really just feels normal to us now. But it’s also harder to see a 5 year old not be able to do anything independently than it was with a baby or toddler. A one year old is perfectly happy being with mom and dad all day and needing help to play. A 5 year old wants to be able to color a picture by herself or go out and play with friends or go to school without needing her mom to be there every second.

Miggy: Explain how Isabel's SMA affects your day to day life? More specifically since Isabel is much more physically limited than most children how does she spend her time and how do you keep her occupied and engaged in the world around her? How has this changed over the years?

Erin: I can’t think of many ways SMA does not affect our daily lives. Instead of waking up in the morning and making Isabel breakfast, we do her breathing treatment and start her tube feedings. She doesn’t go to school because of the risk of illness, so she has teachers and therapists come to our house. She could have up to 10 in home appointments every week. There are several machines that Isabel cannot live without and that have to go everywhere she goes. Every time we get ready to take her out we have to make sure we have all the equipment she needs and enough battery power to last until we get home. Her brain is not affected by SMA so keeping her entertained and stimulated is important. We spend a lot of time during the day helping her do activities. She loves to play board games with her sister, color pictures, play games on her IPAD (her favorite!), do arts and crafts, and play with toys. All of those activities we do hand over hand, meaning we hold Isabel’s arms or hands and move them so she can use her hands to play instead of just watching us play for her. She has a very limited number of things she can do completely independently. She has some specially adapted toys that she can use with an adaptive switch, and of course she loves to watch movies. She also has a communication computer that she is learning to use with her switch.

Miggy: What are the biggest worries you face for your child?

Erin: The biggest worry I’ve had recently is that Isabel has very little communication. She is completely nonverbal due to her lack of facial muscles and her trach. She cannot move her hands enough to do signs or use a typical communication device. She does communicate with her eyes and eyebrows, basically closing her eyes and scrunching up her eyebrows if she is unhappy or doesn’t like something. She can move one side of mouth into a little smile or to give kisses and she can give us a thumbs up for yes. I worry that she can’t tell us when she’s hurt or unhappy. She can’t tell us her worries or ask us questions or tell us what she wants. Of course I also worry that people will underestimate her or treat her badly because of her physical limitations. She hears every time someone asks “what’s wrong with her?” or “is she sick?” and I worry about how those questions affect her and make her feel about herself.

Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Erin: The funniest moment I can think of happened at a special event we were invited to. Our whole family was able to go meet some exotic animals thanks to an organization that arranges outings for children with special needs and their families. We saw a few different animals like a sloth, porcupine, and armadillo and then they brought out the otters! The otters LOVED Isabel. They started out sniffing her toes and standing up with their paws on her feet. Then they figured out how to climb up on her wheelchair and eventually Isabel had 3 otters running around on top of her. One of them even gave her a little kiss on her cheek. It was just so crazy to see those animals climbing all over her and she loved every minute of it!

Miggy: How can people best approach or respond to Isabel? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Erin: I don’t want people to be afraid to talk to Isabel or ask us questions about her, but I also wish some of the people who do ask questions would ask them in a more respectful way. I hate the question “what’s wrong with her?”. There is nothing wrong with her. She is exactly the way she’s supposed to be. I don’t mind when people ask why she can’t move or why she needs the ventilator, we are happy to explain what SMA is and how it affects Isabel. I love it when people speak to Isabel like they would speak to any other child because inside she is just like any other child.

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Erin: The biggest lesson I’ve learned from being Isabel’s mom Is just to enjoy every minute. We never know when our time with her will end and we have really learned to appreciate the everyday moments that we get to spend together as a family. Isabel has taught us so much in her 5 years and we are so grateful to have her in our lives.

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Thanks to Erin for sharing her beautiful daughter Isabel with us. Once again I just find myself in love with this sweet girl and her wonderful family. You can read more about Isable and the rest of her family here.

Mess-Maker, Mess-Maker...

2011-11-10T11:10:00.000-05:00

...Make me a mess.

I realized I never really posted about Lamp's progress with scooting since I first announced that little scoot, scoot. Well she got really good at scooting...in a circle. See her left leg is her dominant leg and so she can scoot really well in a circle going left. And that's all we saw for a while as far as scooting--but even that was a big deal, and has helped her be a little more independant. Then little by little, she started scooting in a circle going right. So while she still prefers to scoot in a circle running counter-clockwise, she is actually pretty good at scooting both ways. In therapy they've been working with her learning to scoot in a straight line, you know actually moving forward. That entails rotating her hips left, right, left, right...a much trickier task. Yesterday her therapist came out after her appointment and said Lamp saw a little boy crawling and she just looked and looked at him like, wait a second...and then she just took off swinging her little arms and rotating her little legs with all her might trying to catch up to him. Now she didn't really get too far on her own, she needed the therapists help to really go anywhere but she said she had never seen her try so hard, putting her whole body into it. The past couple of days I've noticed that when I set her down somewhere, a few minutes later she's moved quite a ways from the original spot. She's like a ninja in her stealth, sly movements--we don't actually see it, but we know it's happening. Just this morning I put some of sister's toys out of her way because they have small parts and I didn't want her getting into them. A few minutes later Princess Sparkle came to tell me that Lamp was playing in those toys. When I asked how she got them PSP said, She scooted!

Who knows, I may have to baby proof this house after all.

The Problem With Healthy Food

2011-11-09T00:23:00.000-05:00

Before I had Lamp we ate a lot more vegetarian dishes. Being prego and even post-partum I craved meat. So lately I've been wanting to get back to more vegetarian fare, and just healthy wholesome, good tasting food. Additionally I've been wanting to once again get my sweet tooth under control and finally drop some pesky baby weight that's been hanging on for dear life. So I've found some new great recipes and stocked the fridge with fresh fruits and veggies. Meals have been more vegetarian, healthy and delicious. So here's the problem. I've been telling myself that I'll just eat really healthy yummy food, and that it will be SO healthy and delicious that I won't even want sweets. So I eat healthy stuff until I'm full. And satisfied. For an hour or two...and then I cave and inhale some cookie dough to scratch that sugary itch. And now, all I've done is eat twice as many calories. Yes some of them may be more healthy calories, but they're calories just the same. It seemed like a couple weeks ago when I was still eating healthy (but maybe not as healthy) but allowed for the sweets I was feeling and looking a little slimmer. I wouldn't eat as much dinner because I knew I wanted a little sweetness after so the total calorie intake was lower. I know sugar is bad for you and can catch up with you in the long run, but I think I'd rather feel (and look!) a little slimmer even if it meant I couldn't shake the sugar habit completely.

Does this sound familiar to anyone? There was a time in my life when I didn't crave sweets so much, but that was before I had kids. Now it's my knee-jerk reaction to reach for sweets when I'm feeling the kid-stress...any suggestions for kicking this habit?

If you're interested here are some of the recipes we've been enjoying.

Black Bean Burgers

Carrot Ginger Dressing

Sweet Potato Chili

Miso Soup

ps--So the carrot ginger dressing is taken from a recipe Gwyneth Paltrow posted on Goop a while back. In this post Gwyneth says, "This dressing is the jam!" And now I can't stop saying that sentence in my head when I think of this dressing...and I can't decided whether it's cute and cool in an old-school sort of way, or pretentious and snooty in a hipster sort of way. But either way, now you have it in your heads too. This dressing is the jam!

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Weekend highlights

2011-11-07T16:27:00.000-05:00

Some weekends are funner than others...this one was on the funner side. Here are my random thoughts. Also, there is a lot of talk about time travel in this post.

Friday night Princess Sparkle had a movie night at our house with all the girls from her pre school class--only 4 girls including herself. They had lot of fun. I enjoy seeing her at this age where she starts doing activities like this. It's fun watching little girls be little girls. However she keeps talking about sleepovers and not only is that not going to happen now, I'm not sure we're ever going to allow it for various reasons.

Saturday night was date night for B and I. He said he had a good idea for date night and did he ever.... we went rollerskating. Seriously the most fun date night in a long time. It was also like taking a time machine back to the 80's because I promise you it's the exact same carpet, decor, pizza, games and prizes (Do kids still want stuffed Smurfs? Didn't think so.) as the last time I went roller skating in 5th grade. Only the music has changed. Also, FYI my husband is really good on roller skates...really good. Busting moves left and right. Not like backflips or anything but for someone who hasn't been on wheeled footwear in years homie could skate. Who knew? So if you're looking for a date idea, there you go. Afterwards we headed to Chili's for molten chocolate cake. Never dissapoints. While there a song was playing at Chili's that I knew, but couldn't remember the name of or who sang it. I got home and figure it out! I love finding and remembering classic tunes...anyone remember the Housemartins? Yeah it was this song. Another step back in time...which leads me to this...

And last night we finally watched the finale of Lost. We were devoted watchers years ago and then we just got annoyed with the whole show. My husband recently started watching again on Netflix. I still wasn't buying it, but after all is said and done I did want to watch the finale. So I read some season synopses online to catch up and then we watched. After it was over we sorta gave each other blank stares and then went online to read some commentary to figure out what really happened. Our conclusion: Huh. Here's the funny thing though.... I also decided to re-watch Felicity recently since I never saw the end of that show. (I still have 2 episodes left so no spoiling it for me!) Well there just so happens to be this weird connection these two shows share: Time travel. I expected it in Lost, definitely didn't see it coming in Felicity. The other connection? They're both created by JJ Abrams. I don't know why more shows don't just use time travel as a neat little solve-all...oh wait I DO know...because it's stupid. I'm onto you JJ...no more time travel to solve your sloppy writing problems OK? Sorry for the snark, but I feel OK about it since JJ doesn't read this blog and he's a butt-loadillionaire anyway which sorta makes it like I'm not writing about a real person. You understand right JJ?

That was our weekend. What about you?

Questions: How do you feel about sleepovers--will you let your kids participate? Why/why not? Have you been rollerskating lately? Are you going to now? And finally, anyone else think this Felicity/Lost time travel/JJ Abrams connection is just a little fishy?

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Spotlightless

2011-11-04T05:40:00.000-04:00

Due to slacking on my part there isn't a Special Needs Spotlight today. Aww. But cheer up because I have a great one lined up for next Friday! Hooray! In the interim I wanted to link to an article several people have actually sent my way that is definitely along the same vein as the Special Needs Spotlight. Imagine if you had a child born with a terminal condition. A condition that would take his life probably before the age of 3. That's the reality Emily Rapp eloquently and honestly discusses in her article Notes From A Dragon Mom. It's one of those articles that will both inspire and haunt you for days. Read it.

Also, if you're just joining us or if you somehow missed the previous spotlights, now is a good time to catch up! You'll be amazed by these kiddos and they're wonderful mama's (and papa's).

Thanks to all these amazing families who have participate and to those of you who have emailed me about you or a family you know to be a part of the spotlight series. I love doing these and look forward to them each week. I'm also learning a lot, and I'm sure others are too. So thanks and please, if you know someone interested in participating in our Spotlight series email me at thislittlemiggy at gmail dot com. Have a great weekend!

New York Pillow Tutorial

2011-11-03T09:45:00.000-04:00

A while ago I started seeing a few different graphic prints featuring streets and neighborhoods in New York City. This poster from Restoration Hardware:

and this chair from Anthropologie.

(picture stolen from my friend Erin's blog)

These are particularly sentimental for us since we lived in Washington Heights and 168 was our subway stop. It's not the most glamorous part of NYC, so it's cool to see Wash. Hts used in on more high end furniture. Anywho, I got the idea of making a pillow similar to these prints.

I started with some really nice linen I bought from this etsy shop based in Belarus. I was surprised at the great quality when I received it and it smelled wonderful like good linen should. Then I used these vinyl letter and number stickers found at Lowes or Home Depot (I had to buy 2 packs to make sure I had all the letters I needed). I also used some fabric paint and electrical tape.

First I cut out the size of linen I was going to need to make the pillow, then using a ruler I drew 4 lines in chalk to mark where to place my letters.

Then starting from the middle and the sides I started sticking the letters on one by one, making sure I was getting the spacing right.

For the small "th" letters I cut pieces of electrical tape. I used my cutting mat, rotary cutter and quilting ruler. Each strip was a quarter inch wide and about an inch long--again I just eyeballed it and put the letters together and added lines underneath the 'th' like in the other pieces. Luckily they were all straight lines so it made it easier. You could also use masking tape for this part.

Then I made two stripes down the sides just using the electrical tape and it looked like this:

Then I mixed my fabric paint. I just used a brand from the craft store that said it was "soft." I toyed with the idea of just spray painting this part and I really wish I would have--so that's my advice to anyone wanting to do this in the future---spray paint. But if you do the fabric paint route here's my advice--make a huge batch of paint, more than you think you'll need. And then double it. I was trying to go for an inky blue color, but in the end I didn't have enough of what I had originally mixed, I ran out of blue so it ended up being a charcoal grey.

Anyway, mix a buttload of paint and with a large brush brush it on. Also, before applying paint press down on all your letters and tape really well so that the lines are nice and neat.

Once it's covered it will look something like this. Like my zig-zag rug, I did it a little more on the dry brush technique so the paint wasn't saturated and thus so the pillow wouldn't feel so stiff.

Wait for the paint to dry, then remove letters. As you can see, there was some bleeding of the paint underneath the letters, but it still looks OK.

Then I washed, sewed and ta-da! Here it is.

I like the look and the overall effect, but the big problem for me is that it happens to be the same dark charcoal as our couch. So I'm not sure I'm going to keep it, but overall I like the look and may give it a go again in a different color and/or spray paint. But I do loving having a little reminder of our NYC days included in our decor.

Hooray.

Recovering and Book Recommendations

2011-11-01T09:35:00.000-04:00

Halloween was going to be busy enough--I volunteered to help with PSP's party at school plus I made sure to schedule Lamp's ot/pt appointment for yesterday so they could see her all dolled up. Not to mention meeting up with friends for dinner and trick or treating later on. Well, throw in an unplanned trip to the ER the night before (105.2! degree temperature for Lamp. I can't even talk about it...) which resulted in a Halloween Dr.'s visit, an uber crabby sleep deprived baby, re-organized trick or treating plans, a messy house and one frazzled mama. I did however manage the school party and an ot/pt appointment. Go me.

We're just going to take it easy today.

But I do have one request....I need to dive into a few good books, please send me your best book recommendations. And yes I've read The Help and The Hunger Games series.

I don't remember where I found the above picture, but it's been sitting on my desktop for a long time....I just think it's purty.

Happy Halloween!

2011-10-31T05:45:00.000-04:00

Check out these two dames...

Aren't they the cat's pajamas?

It is so hard being a modern woman.

Lucky for us we've got this spiffy sheik to keep us gals company.

All dressed up and no where to go...we arrived at our church on Saturday evening for the ward Trunk or treat only to find out the party was on Friday. Boo! Thankfully we weren't the only ones who made that mistake--we felt a little less dumb. And luckily Ms. Sparkle Pants gets to dress up for preschool today and Lamp and I get to come be part of the party. Yay!

Hope you have a screamin' Halloween!