FEET FIGHT!!!

"FEET FIGHT!!!"

Will had his first feet fight with someone who has feet almost exactly like him tonight!!!

He loved it (& so did she as you can tell from her face!) I think it was her first as well!

Hmmm... let me back up.

About 21 months ago, someone connected me with a local mom and her daughter who had limb differences- a congenital quad (meaning all 4 limbs were affected from birth.) We met & visited & I felt so encouraged as I was still pregnant but I watched her then 5 year old accomplish so much in that short visit.
Somehow, in the last nearly 20 months, I've managed to lose their contact info & they lost mine. When Will was about 6 weeks old or so, we ran into them in a waiting room at Scottish Rite in Dallas but it was so brief that the little girl didn't even remember meeting Will. And, of course, he doesn't remember that either!

Friday night, the mom finally found me & we talked. Her daughter has been feeling lonely - as if she is the only person out there like herself.

So - we agreed to meet again!

We had them over tonight for a cook out & it was so much FUN!

Will played with the kids & I got to ask LOTS of questions - both of the sweet little girl & of her mother. She too has dealt with people grabbing her hands to study/examine them & so she gave me some advice on that issue - which was great! I need to start telling kids that they should ask Will's permission first before touching him - that way he has ownership of his body & it reminds people that he is a human - not an object to be handled. Great idea, duh!

She also had advice on dealing with kids doing their "whisper" thing- when, of course, everyone in the whole room can hear them "whispering" about you. I haven't been sure how to approach this one lately & sometimes their "whispers" really anger me. She had some great ideas on this as well.

Mostly, it was fun to just be with someone who "gets it!" We are so blessed by our friends & family - they are SOOOOOO supportive! They (& you) deal with lots of emotions, they drive & fly to the race for Will, they've given of their time & money, they let me cry, they treat Will normal, etc.

But, there's still a teeny, tiny part of me that sometimes feels a bit lonely. I can talk with my friends about potty training (& my fear of it), discipline issues, feeding & sleep issues, craft ideas, school ideas, etc. But, there's a part of my life that though I can (& do) talk about it with friends- they just aren't in that world. They aren't in "research, travel, how will I pay for med expenses, therapy, should we do another surgery, doctor's visits & more doctor's visits, etc." world. They are fabulous about listening to me & supporting me but they aren't there themselves.
And, there's some loneliness in my world.
Needless to say, this part of my world isn't really addressed in What to Expect: The Toddler Years. (They've tried in a really lame chapter at the end of the book, "Your Special Needs Child." - it's lame & doesn't begin to really address my world.)

Everytime I leave Scottish Rite- I cry because I am leaving a world where at least some parent there at the same time as me gets my world & lives in my world.

Tonight, I had dinner with people who get it & live it.

I loved seeing zancos (2 pairs) thrown on my patio.

I loved watching Will & his new friend eat their dinners side by side.

I loved sharing our walking stories- & how much joy that brings us because we both get the miracle that it is that our kiddos can walk!

I loved how she helped Will with baseball. He wants to play so badly & he's been getting frustrated because he just can't seem to make the ball go as far as he would like. She plays t-ball & so she showed Will & I how she holds the bat to make the ball go far.

It's amazing that they live in our community!!!

I love that now I have a resource for the day Will looks at me, much like this little girl told her mommy last week, & says that there is no one else like him around.

I LOVE that at the dinner table tonight, she looked at me beside her & said,
"You know, I'm the only girl in this city with 4 nubbies!" Such confidence & pride in how God created her body! I said, "You're right! And, Will's the only boy in the city just like him! Wow!"

(She is not officially diagnosed with Will's syndrome but I think it is the same syndrome. Supposedly, there are only 11 people in the world with the syndrome... maybe it is a higher number & there are many who aren't diagnosed?)

Anyway, just wanted to share some pictures of Will & his new friend!

Will loves watermelon & especially enjoyed eating it like the girls at dinner
Digging away in his sandbox

Will loved his new friend's zancos- they had bright pink, purple, green, & yellow butterflies all over them! Will is currently crazy about butterflies ("buerflies")- he proudly showed off the butterfly stamp he got on his hand after gymnastics yesterday & he enjoyed dressing up again in Sunday school today as a butterfly.

When she put hers back on, he wanted to put his on! He called out the names of the pieces as she put them on (those parts he can say, that is). I think he liked seeing someone else have to go to so much work to put on their shoes too!

Digging in the sandbox with a new friend

But, I also learned something tonight that I've suspected for a while. Even though I meet someone in "my world," we're not the same. Our kids might have similar bodies but they are different & their personalities are different. And, I am not the same parent as theirs. We might differ in our therapy decisions or our surgery choices or our prosthetic choices or our research methods & even what we call our child's hands & feet. It's been so interesting to me to learn how even though we may be so similar to someone - simply because we live in this reality that only applies to 1% of the world' s population - we can also be different in our choices & our parenting & our ways of handling it. And yet, even where we may have small differences,
we definitely "get it." It's nice to have someone "get it."

Sorry - sidenote - just something I've been pondering.