Can I make a disclaimer to my previous post?  Upon further reading, less emotions, & more sleep... I'm wondering if perhaps I wasn't very clear.

We adore our children and their bodies.  We believe that they are created fearfully and wonderfully by a very creative God.  We do not always understand His purposes or His plans but we know He is good and His ways are good.  We know He is mysterious and as humans, we don't get to understand everything.  He owes us no explanation.

We believe He created each of our children with purpose and intent.  They are not accidents.  Their diagnoses are a part of who they are but they are not defined by that.  And having a diagnosis does not make them wrong or less valuable as people.  It does not make them less loved by their Creator.

We do not take medical decisions lightly - from therapies to prosthetics to surgeries.  If we were given an option to go back to our pregnancies and somehow change the outcome - to deliver babies without any medical conditions - we wouldn't do it.
(Granted, in our humaness, I might lessen some of their challenges or at least make the rest of society more open and accepting to their differences.)
That said, we don't believe our children need to be "fixed."

One of our biggest struggles in pursuing the potential hand surgery for Will has been about what we were communicating to him about his body.  I love his hand prints and the idea of changing them breaks my heart.  I had planned on making numerous casts of them so I could remember them the way they were born.  We never ever want to communicate that he needs to be fixed.  He is perfect for us just the way he is.  We love his body and we are proud of him and his body and we know he is fully capable of achieving what he needs to do with his body.

Yet.  We also want to enhance his life any way we can.  We want to offer him every opportunity for success.  We want to make some challenges a bit less challenging for him, if possible.

We don't use prosthetics to cover up his body or to "fix" him or to make him "normal."  We use them to increase his function, to allow him full participation in a society that expects shoes for certain activities.  And the boy does love shoes.  We don't require that he wear them - we let him choose which activities he wants them on and which he doesn't.  (Sometimes, I urge him not to wear them out and they can sometimes be a pain.)

The surgeries are not about "fixing" him.  Our biggest fear has been about altering his precious body.  They are about enhancing his life and increasing his function.

Perhaps this won't make any sense unless you too are the parent of a child with special needs and differences and you know firsthand this internal battle - pushing your child with therapies or medical procedures or medication to try to make their life more functional or less challenging while also accepting them and loving them just as they are.  And trying to somehow find the balance and communicate to your child how perfect they are just as they are.  Words aren't adequate to describe this raging battle.

Sorry - I just wanted to make this clear.  My heartache with the recent change in plans is more about my resistance to change, the extreme amount of thought and prayer and agonizing that went into the decision and now feeling like we are starting over, and having to tell him that it doesn't get to get easier anytime soon.

I hope this makes sense.  To the one reader out there.  I would never want anyone to think we were trying to "fix" our children.  They are not wrong. Different but not wrong.  And precious and so cute and wonderfully made ... & perfectly designed for our family.


5 thoughts:

ywilbur said...

My son Kharan's right hand appears similar to Will's hand. One of the things they said was thumb lengthening and pinky stabilization would help improve his grip. I was looking forward to it as way to improve his functioning but also dreading the change. What if it didn't improve his functioning? and also as you say precious little hand prints would be changed. They keep talking jaw surgery too and I'm just so scared to commit one way or other. He is happy, healthy, can speak, can write (although on the kindergarten readyness test they really did give him a zero for pencil grip). I was so set that his myoe prosthetic would change his life and he never wore it. I was crushed. As you say it is not that you want to fix him. The way he was born is part of what makes / has made so far Will and my Kharan the little persons we love. You said it beautifully: I would change how other people react to him. He has just graciously endured being oggled by new swim group kids and a new girl on soccer team. I love reading your blog even though Will is younger than Kharan (who is 6) I learn so much from you!

Georgia said...

I look forward to voting for a president who will provide invisible Dalmations for all. What a great world. As an educator missing some time in first grade is a minor issue in the whole of his school years.

Take what is presented to you with love and gratitude. We will be here to support you and your family.

Kristen said...

I can so relate to this post, as we struggle right now with making the right decision for our special needs little guy. You said it all so beautifully!

Katie - a Blessed Mommy! said...

Thank you for your affirmations! I so so so hope Will & Khraran can meet someday! How fun would that be?!? Where do you guys live? (You can email me if you prefer- baseballsbutterfliesblessings@gmail.com )
So glad he is swimming but I agree with you - ages 6-9 are the WORST!! They are past the age of accepting your simple answers or having natural curiosity but not old enough to be too self-involved to care about others.
I' m so sorry he had a difficult experience at the pool - hang in there. He will be outswimming them all soon.

Katie - a Blessed Mommy! said...

Thanks Georgia for your encouragement!

And Kristin - hang in there... praying for your wisdom & discernment as you guys make medical decisions too.

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