Friday, September 30, 2011

Small is Beautiful

Today is Microcephaly Awareness Day.  As I assume anyone reading this knows, microcephaly is one of the conditions that afflicts Anabelle.  This year marks the 4th that this day has been celebrated.  Celebration is simple: wear yellow and tell everyone you meet why you are doing so.  In 2008, a then 12-year-old Robin Freeman, a young man from Great Britain who has microcephaly himself, was tired of no one having heard of his disorder.  He wanted everyone around him to understand what it was and how it affected him and his micro friends.  With the help of his big sister, he chose yellow as the awareness color and selected September as microcephaly month, to culminate in "National Microcephaly Day" on September 30th.  In 2008, he launched this day in England.  By 2009, the Foundation for Children with Microcephaly (http://www.childrenwithmicro.org/) had joined forces with Robin, and the day became an international event.  Robin is a brilliant young man who has handled his disability with grace and patience, and continues to speak for his micro brothers and sisters around the world, many of whom do not have the ability to speak for themselves.

So what has micro meant to our family?  In Anabelle's case, I consider her lissencephaly to be her primary diagnosis, as it is the condition that is most to blame for her developmental delays.  However, the micro is the most VISIBLE of her diagnoses.  Microcephaly literally translates to "small head", and Anabelle's certainly is.  And getting smaller (relatively) all the time.  It grows at a much slower rate than the rest of her, so while on the day she was born neither Brian nor I, nor any of the doctors or nurses in the room noticed anything amiss until her head was actually measured, anyone who looks at her these days can clearly tell that there is something "not right" about her.

Anabelle at 3 days old

Anabelle at 17 months

Her micro actually helped to mask her developmental delays for awhile.  Everyone just looked at the tiny head and assumed she was a newborn, not a nine-month-old who couldn't support her own head.  I got a lot of, "How old is she?", followed by a pause and an, "Oh my, she's tiny isn't she?" after hearing that she was a good 6 months older than anyone would have guessed.  This doesn't work so well now that she is a giant toddler in 2T clothing.  It's pretty clear at this point that it's not just an age thing.

On this micro day, I would like to remind you all that microcephaly is not just a clinical term.  It is real children and their families living with a neurological disorder, the results of which can range from mild to severe developmental delays.  So I would like to share some of Anabelle's micro besties with you:

This is Sahil visiting with his Grandma Mary and Anabelle when we caught up with some of our Anycephaly buddies earlier this year (see blog post from August entitled, "Road Trip").  Like Anabelle, Sahil also has lissencephaly.  He and his mommy, Jen, just moved into some fancy new, custom made digs that will hopefully make it easier for his single mom to care for all of his needs herself (as they have been continually turned down for any nursing help).  As you can see, Ana and Sy are calculatingly avoiding each other.  Sahil has even propped his foot on Anabelle's leg to push her away.  Hopefully they will grow into each other, though, as Jen and I have already negotiated an arranged marriage (his Indian father will be so pleased).  The contract will be sealed as soon as I deliver Jen a goat as Anabelle's dowry...

This rag-tag group of adorable red-heads is Samantha with her two older sisters, Allison and Leah.  This photo is of them in their yellow for last year's Microcephaly Awareness Day.  Gorgeous Sammy just turned four years old, and as a birthday present, her mommy and daddy decided to give her a new brother or sister!  Due to arrive sometime next year...
Samantha's sister, Leah, has cystic fibrosis.  So this family is on a first name basis with the parking attendants at their local children's hospital.  But these are the three most amazing, plucky, loving sisters you will ever meet, and there is so much joy in their lives!

This little beauty is Parker, who is also afflicted with micro and liss like Anabelle.  She's one of my special princesses, as her mommy, Megan, was one of my first special needs friends.  Parker is only about 6 weeks younger than Anabelle, so when Megan and I met, we were still in the "deer in headlights" phase of this whole SN life, and have walked through each step together ever since...

These two amazing little people are Claire and Lola.  Both have microcephaly with simplified gyral patterns (a form of micro and liss) and dwarfism.  At the ripe old age of 10, Claire has only recently broken the 20 lb mark.  Their mommy, Gwen, is literally the second special needs friend I met on this journey.  The very first night that I was reached out to by the Facebook liss/micro community, Gwen and I had a long chat session in which she totally freaked me out (but in a totally necessary way!) about what was to come.  I was terrified and grateful after our talk, she told me so many things that no doctor would ever know to tell me that have made this journey SOOOO much easier to handle.  And she continues to do so to this day, I might add.  Shown here is also World's Best Big Brother candidate #1, Cal (who, btw, in my typical over-controlling Jewish mother kind of way, I have already selected as Elyse's future husband.  I know he's a little old for her now, but he will be sooo happy when he has a hot, young, blonde wife down the line!)


Here's Shiloh showing off her adorable new haircut.  Shiloh is 5 and has microcephaly.  She is legally blind (although I have seen some of this little girl's drawings, and she sure knows what she is doing!).  Shiloh can walk, talk, run, play and cause general mischief!  Her mommy, Suzanne is a lovely, positive woman who faces her challenged live with enviable grace.  She also makes beautiful handmade jewelry (shameless plug, the holidays are fast approaching! https://www.facebook.com/DominiDesigns)


Handsome Cameron, one of Anabelle's oldest micro buddies (almost 11).  He is the youngest of NINE kids, all raised by single supermom, Keri, who also serves as "Den Mom" to our Anycephaly community.  Cam's older brother has Aspergers, and is also a youth minister.  Miss Keri, who I call Momma Bear, is my direct line to God, and spends so much time praying for Cam's micro and liss buddies that I don't know how she had time to raise so many awesome children.  Cam walks, talks, goes to school, and is able to express himself when his disability holds him back.  He struggles with reading, and recently was teased by some boys in his neighborhood for being "not smart".  After telling his mama what happened he said to her, "Mom, I'm mad at them, but God says we are to be merciful."  He is a much wiser man than I.


This beautiful little girl is Alyssa, and here she is swimming in the pool of the hotel we stayed at for the Anycephaly get-together.  Her 8th birthday happened to fall on the weekend we were there, so we had a fantastic reason to party!  Alyssa can talk, play, walk with assistance and loves to eat!  She is spoiled by her grandparents, and with good reason!  The happiest little lovebug you will ever meet!


Cool dude Jacob was diagnosed with polymicrogyria (small head with unusual formation of the brain, essentially).  A recent MRI also added lissencephaly to the list.  He was one of the friends we made in Michigan this summer, and he had his two (typical) cousins with him, who were so great with all the sn kids there.  His cousin, Addison, became a special friend of Anabelle's.  Jacob touches me because he is very close in age to Anabelle's big sister, Elyse.  It lets me feel what my many friends with typical kids the same age as Anabelle feel.  Comparisons from the other side.  It is grounding that I have the opportunity to live in Holland and Italy (if you missed this reference, see my blog post from July, "I don't know how you do it")


Miss Katelyn is the spitting image of her beautiful mama, and they are two peas in a pod.  I guess her father couldn't handle the special needs life, so now it's just Katelyn and mom.  "Squish" as her mom calls her, loves going to school, can sit on her own, as you can see, and has the most beautiful smile in the world!  They also live nearby my favorite band of red-heads (pictured above), and I am always jealous when they talk about getting together!


Here is Princess Giana with her twin, Dominic, who is typical.  Giana has micro and liss, and as you can see, needs a tracheostomy to assist her with breathing.  Like Anabelle, she cannot walk or talk, and uses a gtube for all of her nutrition.  Also like Anabelle, she has a sibling who dotes on her!  Giana spent the first year of her life almost entirely in a hospital, but single mom, Shelley, does an amazing job of keeping her home now!


And finally, I present Emily.  And I place Emily last not in order of importance, but because, as you can see, I present to you a photograph of Emily and her mother with...yes, that is JOHN STAMOS.  You see, there are some perks that come with having a special needs child!  Emily has suffered greatly over this past year.  Spent way more time in the hospital than out, while her mommy and daddy had to shuffle hospital life with work and caring for big brother, Jacob.  Finally diagnosed with mitochondrial disease (is that right, Sara?  Was that the final consensus?) on top of her microcephaly, Emily is finally home and was enjoying a charity event when Uncle Jesse walked into the room.  That's right, our micro kids help us meet celebrities.  And go to Disney World for free.  Or get super cool adapted play structures in the backyard.  Your typical kid never got you that stuff (unless your typical kid is Dakota Fanning)


So, these are some of the people in our neighborhood.  The people that we meet as we're walking down the (virtual) street of Microcephalyville.  The incredible kids (and their families) who know what it means to live our new life.  These are the faces of Microcephaly









13 comments:

  1. This was great Kate!!!! I cried through the whole thing. Must be emotional today... love you and the girls. Give Annabelle a big hug and kiss from me and David. Darcy

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  2. Thank you Kate for this! Is a beautiful and moving introduction to some of the gorgeous and amazing kids and families living with microcephaly, Alison x

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  3. Mr. Rogers would have loved visiting this neighborhood. The faces of microcephaly shine with love.

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  4. You've left me in tears. xoxoxo

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  5. Awesome! Such beautiful children!

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  6. This is truly beautiful! Thank you for sharing your beautiful family and friends with us!

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  7. Blessings to all. You have told a beautiful story of a difficult life for all involved. Continue to inspire with your move-forward spirit.

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  8. Kate, we are thinking about you and the family today! This was beautiful story! I am sure none of this has been easy...but you have a great spirit about everything!

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  9. Beautiful. Simply beautiful. I loved this post, Kate, and I am glad to have "helped" you early on, though maybe I just scared the shit outta you?!??! SO SORRY!!!!! You know I love you guys -- and I hope hope hope someday we can meet up. We just HAVE to. Kiss Miss A for me & tell Elyse I'll keep workin' on my end, yo. :)

    xoxooxoxo Gwen & the dwarves

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  10. What a beautiful post!! Kirstin is my sister in law and her girls are just precious! I have always got the sense that these special people have an understanding that we can't even comprehend! Thank you for sharing so many stories!

    Abbi

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  11. What a way to start my morning. Much love, hugs, and prayers to you and your family. If it weren't for Anabelle I wouldn't be as educated as I am now. Thank you for sharing. Now I have to go clean up my face. My in laws, children, coworkers, and the students and teachers of my daughters school wore yellow yesterday to support Anabelle and her friends. Thank you!

    ~Neicy and Layani Talley

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  12. This was absolutely great! I cried through it. I know exactly how you feel when peopl ask me how old lily is considering she is 10 1/2 months old and looks like a newborn. I get the " oh how old is your baby she is so tiny" everyday.

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  13. I love the joy you find in your life with your beautiful daughter and all of her amazing friends! Keep smiling!I know these beautiful children do because of you and the other wonderful mothers in their lives.

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