I vividly remember diagnosis day.
I recall scouring social media and connecting with families from across the globe.
I watched videos of other children affected by congenital disorder of glycosylation.
I soaked up words of advice and encouragement.
I thought I knew what our future would bring.
The one thing I wasn’t ready for was the spectrum of severity.
I wasn’t prepared to be severe.
I’m going to be honest and tell you that there are so many days I feel inadequate. I feel like I’m not doing enough for our son. I question that we should be doing more, I wonder what else there is out there. I search the internet for tools, toys, gadgets, and therapies.
The families that have children affected by CDG are the most wonderful, humble human beings. I am forever grateful for the connection I have with them. The beauty of a support network is support.
The downside is comparison.
Our children have the same genetic condition but yet the differences can be immense. Each child is incredibly different, and I’ve struggled with where we land on the spectrum of severity. I used to think that if we did a certain skill at a certain age things would be “ok”. Every dated goal that I’ve set for him has come and gone. Long ago I came to the realization that specific goals aren’t healthy for me to set, and the main goal of “progress” is all I need. It has taken me years to be honest with myself and say out loud that he’s severely affected. With CDG, and many other disorders, you can meet one child affected by CDG, and you’ve met HIM/HER. You may meet another child who is affected completely different. You simply can’t compare.
I love our support network with all my heart but there are days I can’t look.
Every time a parent posts a video or photo of their child with the same type of CDG doing something we aren’t even close to doing, I hurt. Every video of a child’s voice saying words, I hurt. I can honestly say I am incredibly thrilled for their accomplishment, but there is a part of me that aches. This may be one of the only times I have asked “why him?”
I didn’t want to be here. I hoped and prayed for the other end.
I knew the spectrum was wide. I held out hope that we would be crawling up the stairs at age 4 (like I saw another child do) or saying our ABC’s (just like the video I saw). But we aren’t. And, it is okay.
We’ll be okay.
I know comparison is the thief of joy. But it’s not just that. I want parents to know that no matter what you may or may not do, your child may just be at the other end. You may work as hard or even harder as another family and still may be farther behind. You can get as much advice as you want and do the EXACT same things and your child may not gain weight, increase muscle strength, or learn to say their ABC’s.
You aren’t inadequate. I know you are trying. I know you are researching and learning by trial and error. We all are. But what worked for one child, worked for ONE child. I am telling you that we have tried it all and it simply doesn’t change where he is on the spectrum of severity.
I am doing my best.
You are doing your best.