I apologize for missing November’s letter. I think it was the first time that has happened, and while there is not much I can do about it not being there, I can be sure to make this one is extra special. Promise. Or as you say it, “Kapeesh. I pommise.”
Christmas is tomorrow and the year is almost over–the year that we proclaimed would be your year almost twelve months ago. And it absolutely was. In one year you beat cancer, turned three, went to Disney World and started school (among many other things we crossed off of your list this year). When it comes to making the most of each day, you totally nail it.
When you were born, I remember so clearly one of the first indications that you had Down syndrome was your hypotonia, low muscle tone. She said, “Her muscle tone is a little floppy…and her reflexes are not as strong as they should be.” You were my first little darling, and I knew not one thing about hypotonia. I didn’t know that in that moment, it meant you were very weak. While I could not deny the state of your low muscle tone and lord knows I tried, I was unprepared for the incredible strength that was growing inside of you every day after your entrance into the world. Strength that would not be fully discovered until a few short years after your birth and could not be predicted or measured by any medical guidelines.
Here you are now. Strong beyond definition. Walking away from the struggles of the past and openly embracing adversity of the present.
I know some days are difficult and some tasks the same. Like how hard it is for you to kneel and climb. I know it can be difficult to use utensils or go to a crowded place. I know how frustrating it is for you to try using scissors or put your coat on. And even though you want to do the puzzles by yourself, I see that you need some help. I know it is hard at times to accept help. Trust me, I know. But you are only one person trying to do so many great things, and you have a lifetime to do it all. So please take our help now because someday you may not need it. That day…well, that day can take its sweet time getting here.
I know we push you and set the bar so high. Not to test you, nor frustrate you. No dear, it is because we know that you can do it. Maybe not in that moment or maybe not for a few months, but we are used to processes and lots of practice–and patience. It isn’t easy to ask so much of you when I know you feel frustrated, but I know that someday–if not now, it will be as rewarding for you as it is to us to see just how far you can go.
Smiling away, you take the challenges in stride. It’s amazing the things I find myself learning from you, even when the moment is unfavorable. The way your innocent eyes look straight through me if I ever become frustrated trying to help you, so to say, “It’s okay mommy. I will get it. I really, really will.” I get a lot of second chances to redo times that I could be better. A rare gift in parenting that I am most certainly grateful for.
I always thought we were the ones paving the road for you, but it is and always has been you up front leading the way; never afraid to show what can transpire with even the slightest bit of tenacity. If you are ever at a point where moving forward seems impossible, I hope that you are able to remember the strength woven within that carried you through the trenches. You really can do anything you want.
No more missing your letters. I promise.