Hard Questions & Willisms

He hit me hard the other morning.
I was so glad to have my sunglasses on as we drove from Ellie's early morning therapy to drop Will of at pre-K.
They hid the tears rapidly forming.
What four year old says such comments beyond his years about his body - comments that give me such insight into his heart?  How was I supposed to respond?  How do I respond age appropriately to a four year old that is dealing with issues so far beyond his years - issues that challenge me at thirty-something?

He went on.. further shocking me with his insight and feelings.

I think he really wants to fit in.  Isn't that natural?  And he knows he is different.  And he is struggling to fit in in a society where he does stand out somewhat.

To which, I was so thankful for our friend we've met - from another country and another generation but with the same syndrome as Will and who invests in his life (& ours) once a month by spending time skyping with us.  Will's favorite part of the skype calls?  "High-fiving" with someone else in this world with similar hands.

So I reminded him of his buddy far away.  To which he said, "yes, me & Mr. Friend.  That's it."

After school that very day, he was telling me about the rock wall on the playground and how his teacher had to help him.  I suggested he take off his zancos - some activities are easier without them.  It's not uncommon for us to run around without prosthetics.  We ran to a park today & a grocery store & left them at home.  So it really shocked me when he said, "Mommy, I don't want to take them off in public.  I don't want the other kids to see my feet."

I cried the entire way over to a friend's house to walk.  How thankful I am for a friend to pray for me and Will as we walked/attempted to run... and how thankful I am for chocolate.

I hate these kind of conversations.  I mean, I love talking with Will & I'm so thankful that he talks with me.  But.  I struggle with how to respond.  I want to affirm him and not minimize his feelings.  (ie:  people sometimes tell me that they would just say that everyone is different - some have red hair and some have black hair.  Yes, of course that is true.  But when you are talking to someone who has a a syndrome affecting 13 people out of 6.2 billion - it seems a little patronizing to compare it to the millions of people with red hair.  And I never want to minimize his feelings.)
But, I also don't want him to dwell in pity or feel less valuable.
It's such a fine line.
And these conversations led to us discussing his possible upcoming surgery which just makes me nauseated thinking about.
He catches me off guard every time and I really need God's wisdom and discernment to answer him the right way - to remind him that he is wonderfully made and precious and perfect for us, to affirm his feelings and validate his very normal, very human desire to fit in with others, and to celebrate his differences and remind him of all he is able to do.
R cautioned me about babying him the other night as I held him while he cried after running into something & bonking his head.
I told R it had been a difficult week & I feel like I am putting Will into a lot of situations that require maturity - being the only kid with differences in his school, playing on a soccer team as the only child with differences, stepping back and teaching him how to respond to questions from others, encouraging him to handle a kid who has been picking on him rather than intervening and handling it myself (this takes serious restraint)... yes, he is thrust into a lot of situations that require bravery and strength.  These situations are all good for him - as we've said before, he has to live in a world with hands and feet and we believe he has value in this society and so should be participating in it.  Babying him would be to take him away to a private island and never see another person again.  Babying him would be handling tough situations myself instead of giving him ideas and encouraging him to do it.  Babying him would be telling him he doesn't have to go somewhere if he doesn't want to.  Babying him would be not forcing him to lay down for blood draws or taking him to a toy store every time he has a rough appointment.
But I don't do all that.  So sometimes, I just want to be a typical mom and hold my little boy when he hurts himself by running too fast.  Sometimes, I want to fix one of his hurts with my kisses and know that its over - it will never come up again when I least expect it.
When I explained it, R got it.

On a lighter note,
a few other Willisms this week:
When climbing a big rock at a park, I told him he was king of the mountain.  He replied, "I'm Drama King!"  (His daddy sometimes calls him that during moments of high drama around our house!)

Apparently, he is now my biggest advocate for nursing (apart from his baby sister) - when I began to nurse one time today, he yelled, "Yay!  Good Mommy, you're nursing Ellie!"

"Mommy, the first thing I'm going to do when I grow up is put on my Batman clothes.  The second thing is to find Gotham City.  Next, I'll get my batrope and batgun and at nighttime, I'll fight the crime.
But I need a Robin.   Where will I find a Robin?"
I suggested he put an ad in the paper.  He's really struggling with not having a Robin.  Apparently, he asked all of his classmates and no one wants to be the sidekick - they all want to be the star, I guess!

3 thoughts:

Mike and Christie said...

Oh those conversations are so hard. :(
And you are so correct to validate his feelings and not compare him to redheads. :)

We had a really hard day at the store today... It doesn't happen often, but when it does, sometimes it is a doozie.

Sarah was literally CORNERED by 4 girls that were shopping with their mom. They were around 16 down to 7 or 8. The older girls asked her what happened to her... and she politely answered. They kept asking and I called her over. 3 of them went back by the mom, but the youngest one stayed and then started to say "I HATE your HAND! I hate your leg! It is UGLY! YOU are UGLY! WHY DON'T you HIDE IT? I have never seen anything like you! and it went on. Poor Sarah... I could see she was speechless so I intervened for the first time in a LONG time. I said, "You are being rude, go see your mother!" She left for a second and then cornered Sarah once again with her big sister and started saying the same things! I couldn't believe it!
I told her to go to her mother again and I followed her. By now, Sarah was hiding. I nicely spoke to her mom saying, "I would want somebody to tell me..." and they LITERALLY MADE EXCUSES like, "It has been a long day and she is tired.... I think she was trying to make friends, and she's the baby of the family."
Honestly..... I didn't know what to say. Sometimes, you just feel like crying.
Instead, we joked about things we SHOULD have said, including that they should stay out of Lake Lavon, the sharks are really biting! And then, we could have the lake to ourselves. :)
All I do know is that God is our source and HE is enough. :)

Katie - a Blessed Mommy! said...

Oh Christie. My heart has been breaking over and over again for Sarah (& you & her sisters) as I have thought about this all weekend. To be honest, my first gut reaction was violence. I just want to hurt that child and her mother for hurting Sarah and making excuses - not having the decency to apologize. ARG. I know - not very Christian of me.
And then I think of what a stuggle to teach our children to love and forgive - especially when the person hurting them doesn't show any remorse.
Oh - I am so angry for you and so hurting for Sarah.
She is beautiful. She is perfectly made for your family. And how thankful I am for your insight & wisdom as I know we may face similar things someday.
Thanks for sharing your heartache - Katie

kate said...

first of all, you're doing an amazing job! i am constantly amazed at your brilliant responses, your wisdom, your patience, and your strength! second, you need to know that all week long we've talked about "our new friend" (bc LK can't remember ANYONE'S name!). will's personality is so great and his smile so contagious that other kids want to be around him. that child is GOING to make a difference in this world, and YOU are the one that's making it happen. girl, i can't imagine one week in your shoes, but you do it with grace and beauty like no one else could. he's going to have hard times, but no one could prepare him like you are. i hope we can walk the road with you!

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