Jonny rocks Down syndrome, ready to fly!

When Jonny was born and we realized he had Down syndrome, I was really quite honored to be his mom and thrilled to know that God had many lessons in store for our family. I don't know where this contentment came from - it must have been the Holy Spirit. Though I didn't go through mourning, we did have our share of emotional ups and downs the first 15 months of Jonny's life because he had several gastrointestinal issues that meant surgeries (including a temporary colostomy) and aspiration pneumonia. With six children at home, it was hard to be torn in two - and of course Maddy was born 54 weeks after Jonny which meant Jasmine really brought her up the first few months as Jonny went through two three-week stays in the hospital, once coming close to dying.

Nineteen years later I can hardly believe the 7-1/2 pound blue-blanketed bundle whose almond-shaped eyes captured my heart is now a grown up man.

So he doesn't know how to read - the goal I focused on as most important in those early days. Instead he has taught me to see things from God's perspective: Does God care if we read? No, not really. But God does care if we live with faith and love and joy and compassion. And Jonny does all those things better than anyone else I know.

Sometimes I think it's because we skipped the grieving period. because we taught our other kids from the get-go to be PROUD of Jonny's extra chromosome, because we taught him too - that we avoided the ambivalence. Did people stare? I never noticed. When people asked how old he was, I'd say, "He's three months, but he's a little small. He has Down syndrome!" hoping they would ask questions and ready to answer them. From the get-go I felt that my responsibility as his mother was to help him realize his potential, but also to help the rest of the world reach theirs - in terms of letting go of fear and learning to appreciate these lovely people God has sent to light up our lives.

I don't mean to make light of the reality that is was hard to face that he was not learning to read or to understand the details of money and time - though Lord knows, his teachers and I tried very hard for many years. But early on I began to suspect it wasn't about me helping Jonny reach his potential, but allowing God to let Jonny help me realize mine.

Being Jonny's mom has taught me that God doesn't measure us the way we measure ourselves. Do you think he cares about intelligence? Jonny taught me that there was so much more. He's been in over 30 plays and never missed a cue. He serves as an altar boy. He cooks and cleans and redecorates the house and and helps take care of his three younger brothers (we ended up adopting three other boys with Down syndrome, now 16, 15 and 11). He loves his Ipad, Facebook, movies, music and all the other things his peers love. He has a soft spot for his nephews and nieces and babies in general. He was Homecoming King at his high school last year. He graduated with his sister Maddy. who for the first time is not part of his daily life as she has moved on to college.

And Jonny has moved on too.

But first, let me back up to this summer, when we moved and counted on Jonny's terrific work ethic and physical strength to be part of what made it happen. What a thrill for a mom to know her son has a contribution to make and enjoys making it - maybe even a little more than his peers :)

I've been meaning to share this story:

One day in the midst of our move we arrived at Costco and I was finishing up a call on my cellphone. Jonny jumped out of the car and was gone in a flash, but I wasn't too worried as I figured he'd get stopped at the door since he didn't have a Costco card. When it turned out he wasn't at the entrance after all, I asked the attendant and she pointed in the direction of the food/bathrooms. I looked down there, but no Jonny.

I proceeded to do my shopping, hoping that we would run into each other eventually. Meanwhile, Tripp was in a panic at home, unable to understand why I was so casual. "What if he's lost?" But how could he be lost? I knew he had to be somewhere in Costco. Still, by the time I was ready to check out, I still hadn't found him and was finally starting to get worried. Then all of a sudden I heard, "Hi, Mom," turned around and there he was bragging about how he had bought coke for everyone. I asked him how, and he said with the money in his wallet. By this time I was going through the checkout and the next checker over chimed in that he had gone through his line. They let him pay for it with no Costco card.

"So where's the coke?" I asked.

"I took it out to the car," he said proudly.

This makes me happy and worried at the same time. He's so confident, so fearless, so eager to be a grown-up. I want all those things, but I want him to be safe. Sometimes I feel like God has him surrounded by angels who protect him. And I never worry that anyone will be mean to him because - well, how could anyone be mean to a person so full of joy and kindness?

The way the education system works is that kids with special needs can continue to receive an free and appropriate education (FAPE) until they are 21. Though Jonny graduated with Maddy in June, he is still starting his mornings this year at Loudoun Valley High, which serves as a base for him to gain experience in the working world. He has a job five days a week from 10-2 at the Habitat for Humanity ReStore which is just a hop, skip and jump away from the high school. He bought a new pair of steel-toed work boots for himself and he brings a lunch each day. At the ReStore, he helps clean, arrange and move furniture, sweep the sidewalk, and just anything else his bosses have for him to do.

He is so happy!

This is from his job coach:

Greetings!

You just know it's going to be a good day when the employer tells you to go on, that they have work to do! Your son has been taken into the ReStore's family. All have jumped in to help guide and train him as he seeks vocational independence.

Today he unloaded the truck with ____; tidied the store with _____ and moved carpet tiles with ____. I went to check on him at 1:30 and he wanted to walk by himself to school at 2:00. The staff said they would watch the clock for him. He showed up in the classroom about 2:15. He had gone the gas station to buy a soda!

Wow...

Also the other day, his big sister Samantha and nephew Andrew stopped by to see if they could take him to lunch. There was a little discussion with the manager about whether they should call me and it was agreed that that was not necessary as he is 19 and signs himself in and out. Can you imagine what a thrill this is for me - every step he takes towards independent living?

When he was a baby I remember Tripp said, "He is the one who will never leave us." How little we understood what God had planned for our eighth child. With all the older siblings who've left to live their own lives, Jonny sees his way clearly. He is spreading his wings and yearning to fly.

Our job is to keep up with him, equip him with more skills and help him build a working resume that can prove to any potential employer he has what it takes to make a difference anywhere he goes.

Because he's been proving that he does make a difference since the day he was born.

~~~~~~~~~~~~

More about Jonny and Down syndrome:

Jonny's Birthday - celebrating 19 years of Down syndrome in our family

Jonny and Maddy - Loudoun Valley High graduation

Jonny voted!

Jonny Curtis- Loudoun Valley Homecoming King!

Jonny and Maddy Curtis sing the National Anthem

Jonny Mows!

Jonny and Jesse - Confirmation April 24

For Jonny, Down syndrome rocks!

Well, you get the picture - there's a lot more about Jonny if you use my personal Google to search for his name.

But here's a real blast from the past:

About that extra chromosome