Saturday, January 26, 2013

No Ordinary Love

I told a room of 40 people the other day a story about a girl who dropped out of high school at 16, who teetered dangerously close to walking that other, dark path, who turned it somehow all around.

That girl became a teacher, and had a knack for special kids. So, that girl became a special education teacher. That girl was doing well. She got married and had a baby, a long awaited little boy, that girl always wanted a little boy. Then, a divorce, before that baby was 1. That girl was shocked & shaken.

That girl is me. That little baby boy is Ari, and he is 6 and almost 1/2 now. To my great surprise and at times admitted internal greif and dismay, my son was born with a number of special needs. It's been a lot, it has. The biggest part though is the love. I just can't explain it, he's just so special, so much more beyond what is different than other kids about him, or what he lacks or what he can't do, or how behind he is in this or that, or what you can or cannot understand about him. He's like - extraordinary.

Us mom's with special kids are not your ordinary mom's. We're not supermom's either - we just learn things that mostly, you would never set out to learn. We learn how to live with loss, and how to temper hope, and how to make every moment count, with kids that well - you just never know how it is going to go. We cry at things others mostly don't even notice, because they mean the absolute world.  Having Ari and then getting to have Ian, I've been so privileged to meet so many extraordinary mom's of the most amazing people I'll ever know. These kids, they just make us so much better.

It's no ordinary love.

Today, was a day like that, where something so average for a boy his age - something that had been so far out of reach for so long - happened. Right in front of my eyes, for the first time ever. He's been crying and begging mommy for such a long time. Watching other little boys, for years on the street where we lived enjoy such a seemingly simple childhood rite. All he could do was watch.

What can I say? I tried? I did try, I researched, I bought every off the rack model I could afford, in every configuration, that I could. I even tried to hotwire a few to work for him. None ever did.

Then, some hope. A Physical Therapist with an idea. Ever heard of Ambucs she said to me? Nope I said back. Well, it's a long shot, the waiting lists are very long, but it could happen for him. Let's try, I said. Two and 1/2 years passed. Then, a phone call - Ari has been chosen! Please check his paperwork and get back to us so that we can process him. It arrived before Christmas but I knew I could never put it together alone.

So today, became the day.

It started with me asking for help - something I have no shame in at all! Without help, Ian would be languishing in an asylum, if even still alive.

Help arrived. Great Help. Special Help. Family Help.

The man in the hat. My cousin. He lost his little special one, she's an angel 6 and some years gone now. We joked while he worked, he laughed some too, and her name was even said. No ordinary love, and guts and will - does it take for him every single day. It was a special gift that he put the pieces of my son's greatest wish together. As his daughter often wrote: Dream It, Wish It, Do It. 

Then the moment came, he was so happy, he smiled and smiled and waved and laughed and said look at me! I ride my bike! His little boy dreams, just the everyday average ones for an American neighborhood kid, all came true! He was doing it - by him self!

Granted, it was absolutely freaking cold out and so I was forced to put an abbreviated end to our little miracle ride outside, which brought the most deep and painful cries from my boy - oh how he loved that first time he could ride a bike. Oh how he would have stayed outdoors in the frigid Wisconsin air and rode and rode and rode....

No ordinary love, for a little one and his mama. I think the tears froze to my face.

The moment was surreal for me, standing there, watching it all, snapping pictures, beleiving and confirming all at once that it could really happen for him while he was still a child - having had the Amtryke so humbly delivered to our door at no cost (and trust me these things ain't cheap!), Cousin Rick working in the cold on his knees in our garage to piece it together. I don't think it was a mistake that he was the one I thought to call and that he was the only other person to witness this extremely un-ordinary happening.

Having a child (or 2) with special needs is hard, on many levels. Still, I wouldn't trade it. No, I would not, not ever. I cry just writing this as the emotions flood back to the moment I raised my arms up in victory for my special little one. He rode a bike today, for the first time. If you only knew what a long and difficult road this has been - today was no ordinary love - shining through.

I don't know where to begin to thank the many people who made this possible for Ari and us today. It all began 2.5 years ago with Children's Healthcare of Atlanta at North Druid Hills and a wonderful Physical Therapist there named Sarah. Sarah knew about Ambucs, a national organization that builds bikes for children with special needs so that they can experience the thrill of independently riding a trike or bike. Sarah encouraged me to put Ari on the list and a woman named Dannell at Ambucs made that happen more than 2 years ago. When the call came in that someone wanted to grant Ari his Amtryke this December, we needed new measurements right away and I am so grateful to Ari's new school based Physical Therapist Leah, who made that happen within 2 days of my request. Her measurements and updated tryke recommendation was a perfect fit! To the organization in Oklahoma that chose Ari as the child they would donate this Amtryke to - words cannot ever express the thankfulness of this gift. To my cousin Rick, or baldy (just not late for supper), I love you more than you know, and I thank you for being here and for taking the time for Ari and for sharing in the a moment I will remember for my entire life. To the genius' at Ambucs - your ingenuity changes lives, and I'm so grateful for the lot of you that thought of that simply beautiful cord pulley system that changes the world for my little boy, that lets him ride his first bike!

I love no ordinary love. Today was a good, good day. 

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