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Monday, July 22, 2013

One in a Million

Dylan, our sweet baby boy, was born on May 31st at 5:30 am.  He was born perfect.  He was born weighing 5 pounds, 15 oz and 19 inches long.  He was beautiful.  He was born strong and healthy and full of life.

And Dylan was born with Microcephaly.


The past two months I have been working through the process of accepting this diagnosis, and allowing myself to say it out loud.  Now it is time to put it in writing.  To let the people in my life, in Dylan's life, know that our precious baby boy will be different.  What this means for him is still unknown, and will likely continue to be unknown for a long time.

What we do know is that Dylan will have more struggles than most kids.  He should crawl and walk and develop all of his gross motor skills, but he will likely be delayed compared to other kids his age. We also know that he will have intellectual disabilities, the extent of which are completely unknown.  We know that he will require extra help to reach milestones that most kids and parents take for granted.  We know that we will have physical therapists, occupational therapists, and speech therapists involved in his development.  We know that Dylan will look different from the other kids.  We know that, as his parents, we will be faced with the overwhelming task of raising a special needs child.

But most importantly, we know that Dylan will change the lives of everyone who has the honor of knowing him.  He was placed in our lives - and in your life, if you are taking the time to read this - in order to bless us in some unknown way.

As his mom, it is so hard to look past his diagnosis and accept that this was God's will for his life and for the life of our family.  For some reason Dylan inherited a genetic disorder that has an incident rate of 1/1,000,000 in Caucasians.  ONE IN A MILLION!  And he was given to Brian, Jack, and me.  There are a thousand questions that I will likely never have answered. Why Dylan? Why me? Why our family? How can I possibly manage this responsibility?  But in the midst of all of these painful questions is the hope that God doesn't give us more than we can handle.  I have to remind myself of this a thousand times a day and I have NOT fully accepted that it's true, but I really have no choice other than to believe it.

Primary Recessive Autosomal Microcephaly.  Four words that forever changed my life.  To what extent....we will all have to wait and see.

4 comments:

  1. Wow- this sounds like the beginning of an amazing adventure, hard as I am sure it will be at times. Praying for you guys & little dylan man! xoxo

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  2. wow, praying for you guys. you are an amazing woman Amy and you are right God has an amazing purpose and plan to work through in your family. I know it will be a blessing to so many even if it is hard to see now! we are here supporting you, loving on your family and praying for a peace that passes all understanding!

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  3. Thanks for sharing Amy. God will be with you and your family always and carry you through the hard times...even during the whys. Remember you are never alone! Praying for your family.

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  4. Hi Ottaways, your boys are precious. We're praying for your continued strength as you face this challenge of diagnosis for Dylan. You're doing great. We're very proud of you and always remember how admired you are. Love....& hugs. Sunni

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