As I watch my son work harder than he’s ever worked before I catch the eye of the child’s mom on the next mat over. She gives me a kind smile and as our eyes meet we both instantly share thoughts without saying a word. My son isn’t shy about letting his therapists know that what they are doing is hard, uncomfortable, and something he’s never done before. The mom and I occasionally glance at each other and give one another imaginary fist pumps. We are here. We are pushing our kids to achieve their full potential. Surely that’s worth a fist pump or two.
The 3 week long intensive therapy is tiring, and this year I added a week so he’s been going strong for nearly 4 weeks. I can’t tell you how many times my 3 year old has fallen asleep during his fourth hour! And I’m surprisingly exhausted from watching him. I watch him fight and work hour after hour. I watch him cry, sometimes scream, but also giggle and smile when his therapist gives him a cuddle. This is boot camp and one that is well worth it. He is fighting to do something so many of us can’t imagine. He’s fighting to hold his body in a seated position without falling over. He’s fighting to stand and feel the ground underneath him. He’s incredibly uncomfortable and immediately gets defensive when a spoon is set on his tray.
This is anything but easy.
At the beginning of the intensive we were asked what our goals were. This question is extremely hard for me to answer. As a parent of a child with severe delays I can’t get my hopes set on a specific milestone achievement. I would love to tell them that after 3 weeks I would like him sitting or crawling, but that’s unrealistic to ask of them. I simply say “overall strength.” That’s all I’m asking. Get him stronger and closer to those milestones I so badly want him to achieve. Any amount of progress is worth the sacrifices it takes to get to NAPA. No matter what, I know we are walking out of NAPA stronger than we were before.
And as we walk through the big gym tomorrow afternoon and out into the California sun I know I will cry. I will cry because of the bond that we formed with his therapists. His cheerleaders who believe in him. His trainers who are preparing him to go home and do big things. His therapists who give me tremendous hope for what he will achieve. I will shed tears because being at NAPA 4 hours a day you find “your people.” I have connected with so many other mothers and can’t wait to see them again next year. The moms who I imaginary fist pump, the parents who I laugh with, and the moms who I want to hug a little longer. Next year can’t come soon enough.
There are so many words to sum up our experience at NAPA, but in more ways than one, it’s inexplicably magical.
Until next year…
A letter to my son on his third birthday,
If there was a picture next to the word joy in the dictionary your smiling face would be next to it. There is nothing better than seeing you grin from ear to ear. Your giggle is even better, there’s a piece of unearthly magic in it. I have to say that the only thing better than seeing your smile is the feeling of knowing I put it there.
If there was a picture next to the word strength in the dictionary, again it would be your face. I am in awe of how hard you work day after day for things that so many of us take for granted. Sitting, standing, purposeful movement, holding an object, reaching, following directions, and so many more. Day after day you are pushed to the limits and pushed to do more, learn more, and yet you don’t give up.
Next to the word teacher in the dictionary there would also be a photo of you. Because of you I have learned more than I ever thought I could. I have learned about the unfairness of life. I have learned that each day is a gift and more aren’t guaranteed. I have learned that family really is everything. I have learned that finding friends who “get it” and who you can laugh with are truly priceless. I have learned that at your young age you are changing lives and changing me.
In the dictionary next to the word love there would be a picture of you. It goes without saying that we love you more than words could ever describe, but it’s the way you love that astonishes me. You love without any expectations. You have no ultimatums or conditions to your love. You love completely, honestly, and wholeheartedly. You know no other way.
To say I am blessed to be your mom is an understatement. These last three years have been exciting, scary, blissful, worrisome, and most of all WONDERFUL. I wish you the happiest of birthdays, pray for more, and thank you for being one of the most amazing little humans.
Our 5 year old has no idea his little brother has a rare genetic condition. He is completely unaware of the term “special needs.” He doesn’t realize that his younger brother is not “typical.” He likely thinks that a stander in the middle of the living room is normal. He may think a high chair is only used for messy play. He probably thinks that gait trainers are how children learn to walk. He understands feeding tubes are for providing nutrition to his little brother and never questions why he doesn’t eat orally.
The other day as we were packing up to see one of our many specialists I heard him say under his breath, “he sure goes to the doctor a lot, I just don’t know why.”
So many thoughts went through my mind. Do I tell him that his brother was born different? Do I tell him that his little brother’s body doesn’t work like his? Do I tell him that his brother is severely developmentally delayed (in 5 year old speak, of course)? I have always told him that the doctors just need to check on his little brother but that’s the extent of our conversations. I have never spelled out his brothers disorder and what goes along with it. As I packed up I kept wondering if he needed more. Does he need to know more?
After all of these thoughts you know what I did? Nothing.
I smiled at him as I picked up his 3 year old brother from laying on the floor and said “let’s go.”
Our life may not be the norm but it’s our normal. It isn’t abnormal to have a platform swing hanging from our basement ceiling. It is not abnormal to go to private therapy daily. It’s our life to see a number of specialists that I need fingers and toes to count. Our life is ours. Our life is our normal.
Our 5 year old loves and adores his little brother the way he is. He doesn’t see him as a 3 year old who cannot sit, talk, crawl, walk, or clap. He sees him as his little brother who he can make smile and laugh simply by giggling in his face or playing peek-a-boo. He turns the light on in the car at night because he knows his little brother doesn’t like the dark. When his brother’s feeding pump beeps he shouts to me so I know to go check on it. When he hears him cough he yells to me from the other room and asks if I need a towel in case he has thrown up. He is a warrior for him and he doesn’t even realize it.
There will come a day when I will explain more, but for now, I will just let him simply love him.