A video popped up on my Facebook memories today and I can’t believe the impact it has had on me. It’s of my youngest doing therapy in our home a few years ago. The emotions that filled me were insane.
This was a time in our lives when so much was unknown. We finally received a medical diagnosis for what he had. 22q11.2 Deletion Syndrome. And now we were just trying to figure out what it all meant.
While I watched the video I was shocked to remember the way I felt back then. I was constantly worried. He had early intervention therapy everyday and we had no clue where he would go to school. We had no clue what the future would hold for him.
And here we are a few years later and we still have no clue. But we have learned so much. We have learned to take everything one day at a time. Worrying about the future is totally pointless.
When we would speak to other parents of older kids with 22q, we were always so shocked at how calm they were. Why weren’t they freaking out like we were? Why were they able to talk about everything with such ease? Didn’t they read all of the horrible statistics?
And now we know. It’s because they had made it to the other side. The side we are now on.
A few years ago we held a fundraiser to raise money for the 22q Foundation that was in place and helped us so much in the beginning. Our three older kids were jealous and demanding to know when they were going to get to have a fundraiser. They were really bent outta shape that their little brother was getting all of this special treatment.
They were also jealous of all of the therapy he had. He got to do all of these fun things with a different therapist each day. He also got to go to the hospital a lot and always came home with a new toy.
They were completely oblivious that all of this was difficult for him to go through. Things that came so naturally to them, he had to work so hard for. They had no idea the amount of needles the hospital called for.
But that’s the beauty of it. He is just their little brother. There is nothing special about him. And they make him keep up with them, which is the greatest therapy any kid could ever receive.
A few weeks ago I took him to see his team of doctors. This appointment included an academic evaluation. This little guy answered each and every question with such confidence. He was smiling the entire time.
He got almost every single question wrong. But it was hilarious to watch him put on such a show. He was so proud of himself. And I was so proud of him. The gifts he has can’t be measured on a scale. We learned that long ago.
He is now in kindergarten and thriving. He gets to be at the same school as his older brother and sisters. And he’s just a regular kid.
And that’s what it’s all about. We’ve made it to the other side. We no longer live in fear of what the future holds. Because we have no control over it. For any of our kids. We are living in the present and it’s a pretty awesome place to live.
To any parents out there that are too worried about the future to enjoy today, I just want you to know that you will get here someday. You will make it to the other side and it’s a great place to be.