Hard Questions & Miraculous Meetings

He asks the hard questions a lot lately.  They come out of nowhere - while we're in the car or at the grocery store choosing ingredients for taco salad.  It always catches me off guard and catches my heart somewhere in my throat.

He says while going to a new friend's house to play, "Mommy, why are my hands different than yours?  I want hands like you guys.  I'm tired of people asking about my hands, saying, 'Will, why do you have hands like that?' I want a robot that is a hand switching robot."

He comes running from his room while I stand at the kitchen island, wearing his Boston Red Sox hand on his hand shouting, "See!  I have hands like you!  You told me they wouldn't change but they did change!"  He pretends.

I've had four years to prepare and yet I'm caught unprepared every time.

How do I answer him?  How do I explain to a three year old who is so far beyond his years in maturity, what I do not fully understand myself?  How do I convey my conviction that God has such great purpose for him and his hands and his feet?  How do I, believing John 9, claim that for him?  How do I teach him that I do not know the why?  Doctors across America have tried so hard - I've given so much blood for testing - just in the last three months I have given 57 vials of blood.  And yet, science can not explain.  God is bigger than science.  I don't understand His ways but I do know He made my children fearfully and wonderfully.  Sometimes, the human mommy in me wants to shout, why us?  Why do my children need additional challenges in life?  Why must they endure so much more?  Couldn't there be other ways to accomplish Your purposes?

I don't fully understand.

Yet, I absolutely know that He created them with intent and purpose.  He has used my children already far more than I could have ever imagined possible.  He has blessed us over and over again - in ways I don't deserve but am so thankful for.  And if I got to choose, I wouldn't want his body any other way.  His character is stronger because of his life experiences.  His body is precious & perfectly made.

How do I respond to my inquisitive child, to help him embrace his body?  Can I tell him enough how much I adore his hands and feet?

Can I reassure him adequately that he is fully capable?

Can I praise all that he can do & and all that He has done for him and He will do for all of us?

How do I look into those big blue eyes and tell him, again, that these are the hands and feet God created.  These are the hands and feet he was born with.  These are the hands and feet he will do big things with.  How do I tell him, again, that there are no hand switching robots.  How do I tell him he can do anything?

How do I walk that fine line of helping him move past questioning and into acceptance, of acknowledging his pain and his questions without allowing pity, of celebrating who he is?

There are moments I just want to be numb to these questions.  Moments I don't want to deal with such issues.

And after a week of these sorts of conversations and quiet tears filling my eyes behind sunglasses - not because of his body but because of a hurting little heart, a boy trying to grasp such grownup mysteries, trying to understand who he is,
after a week of this,
Saturday came.

And Saturday, after a series of emails, we skyped with a new friend.    My little brother found him via an article in newspaper printed online.  A married, father of four, professional with multiple degrees, who took time to meet us via Skype.  We span two different countries and vastly different climates.  Yet, we share the exact same diagnosis.

There's so few in the world - a handful really.  What an incredible opportunity to meet.

For the first time ever, Will met someone with his same diagnosis.  Will high-fived the computer screen with someone whose hand matched his own. He kept asking to see again.  He asked about the man's zancos.  He said "Nice to meet you" and I thought how thankful I am for someone for Will to meet - a man further along on this road whom Will can consult with specific questions/challenges as he meets them.

A friend and a resource when I can't answer the hard questions.  When I can't relate and my heart breaks at that, finally, someone who can.

My eyes filled with tears again.  Celebration tears of joy at such a meeting.

He gave us such insight and advice from his own experiences.  He affirmed us and confirmed things for us.  He offered encouragement and hope and wisdom and humor.  He met with R & I for an hour ...

And then Will met him.

Will's loneliness he has expressed recently in "not having hands like you guys" was eased today as he met someone with hands and feet like his.  He's not alone in this world.

And I am so thankful.  Thankful to be his mommy and that I get to share in this journey of discovering who he is and who he will be with him.

It doesn't make the questions easier.  It just somehow makes them sweeter.

Together, our hearts all breathed a sigh of relief.  Finally.  Finally we have met someone who gets our son and his story.  What encouragement he had to offer us.  What insight and wisdom and advice on bullies (prosthetics make good weapons) and advice for a mommy and laughter.

One of the best ways I can think of to spend an hour on Saturday.  We are thankful.

6 thoughts:

Mrs. Jenk said...

Thank God for Skype! I love that Will "met" someone. I can't believe 57 vials of blood, Katie! That is amazing. You are doing a unbelievable job and Will will guide the next one when he is older!

Jill Fritts said...

Oh wow, I am so happy for you to have met this man. I'm crying tears of joy for you and your family. God Bless.

Mike and Christie said...

That is so wonderful that you were able to meet him! God Bless your brother! :)

The Lord will give you grace and wisdom as Will grows so you can help guide him in his questions.......

There IS a reason for all this!

Amanda said...

What a blessing to have connected with a new friend. That is great news.

Miles said...

What a blessing Katie. I read this post right after the one above it so...laughter and tears...what a combo! :)


naomi said...

I am crying similar tears as I read, dear friend! the day before reece's third birthday two weeks ago, he randomly told me in the car that he doesn't want a lucky hand when he grows up. you articulated the emotions I felt perfectly. all I could muster to him (thankfully it was right as we were parking so I got him out, held him and looked right in his eyes) was that God gave him his lucky hand and his big hand and mommy is so thankful bc I know God knows best. that simple explanation is as much for me as him. I kiss his lucky hand constantly, telling him how beautiful I think it is...hoping those acts of truth on my behalf will somehow sink deeply into his soul and give him confidence as he grows. not everyone thinks it's strange...mommy thinks it's beautiful. love you, katie!

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