Every skill that Damian loses due to ASMD is devastating, but anyone following our story for some time will appreciate how particularly heartbroken we are over this one.
This week, Brock had an extremely rare day off and was able to watch and play with Damian pretty much all day, which, besides being an awesome day for Damian who loves his daddy, gave me an incredibly freeing day of productivity! I was on trip #3 of bringing groceries in from the car after running errands when Brock said, "Brittany... Damian doesn't wave anymore."
I quickly said I couldn't handle talking about that yet and left for the car again for another load.
Every loss of a skill or behavior runs through the same process: Damian gets physically slower at doing the skill. Then he does it sparingly. Then we realize it's been a few weeks since he's done it. And then it gets added to the list of things he no longer does:
pulling himself up to stand
scooting around on his bum
pushing himself up to a sitting position
dancing while sitting up
throwing a ball with both hands
sitting up on his own
Not to mention all the words and phrases he used to say. Last month the only word he remembered how to say was "Daddy."
He doesn't say "Daddy" anymore.
And now his iconic, heart-melting wave he gave to everyone and everything is gone too.
The truth is, when Brock told me this week that he noticed Damian wasn't waving, I already knew it was gone. I hadn't seen him wave in a few weeks. But I didn't say it out loud because then it would feel real. And I didn't want it to be real. Waving was Damian's thing. He loved waving. It's how he communicated - how he asked people to notice him, how he greeted me in the morning, how he said he wanted to play with a toy, how he asked if people were ok (i.e. he used to wave at Brock whenever Brock was using a blender because the noise startled him and wanted to make sure Brock was ok - he would relax when Brock waved back with a smile). After I brought in all the groceries from the car that evening, I did talk to Brock about it and we finally acknowledged that Damian had forgotten how to wave and then I just cried through the entire fancy dinner Brock made for us. This just sucks. This disease SUCKS.
During the holidays, I couldn't shake the feeling that this could be the last Christmas Damian is mentally "there" and aware of what's going on. We didn't get him a bunch of toys for Christmas because we've instead been reverting back to the younger aged ones meant for babies that he already has (he LOVES hanging mobiles again).
It's hard, really hard, to see that as of this month, Damian has been regressing for a full year, and not one thing medically has been applied directly to Damian to help. It makes me so anxious for this treatment that is in the works. We've certainly come a long long way in terms of getting this treatment process going, but this disease doesn't know that. It just keeps destroying my baby's brain and disabling him bit by bit as quickly as ever. I'll be honest, it makes scheduling delays like "people are on vacation, people are off for the Christmas break, there's a staffing switch, we have to make some adjustments so just give us another week, etc." drive me absolutely CRAZY.
But I can feel two things at once. I can be incredibly frustrated that my baby is literally dying AND also be incredibly grateful that there is a fantastic group of people spending a lot of time and energy and stress trying to get an experimental treatment approved for him.
I find myself constantly trying to balance hope with pragmatism. I have a lot of hope that this first treatment (the one that costs $500K and we have covered financially, thanks to YOU) will do some good. It's all we have right now, so I'm all-in. The starting dose is going to be higher than any human has ever tried, and I'm just anxious for Damian to start.
I think chances are good that we'll see benefits. But there's also a chance that it doesn't pause the brain degeneration, but rather, just slows it down. Or worst of all, it could be that it does nothing for Damian. No matter what, we need the other treatments to be developed now. They need the rest of the funding now so they can finish all the studies they need to do before Damian can start taking the treatments they already believe are going to be more effective than the one we're currently trying to get started.
Please, if anyone has connections to media and news outlets, radio personalities, influencers, celebrities, or anyone with large followings - please tell them we could really use their help.
I don't know what is going to happen over the next few months. I'm praying hard for a miracle. I'm hoping for real improvement. I mentioned in a social media post this week that every time Damian has a growth spurt (and THANK GOODNESS for the miracle that he still has growth spurts!!), some strength, both physical and cognitive, returns just for that week. Out of nowhere, he'll start pulling pegs out of a pegboard perfectly, or he'll support himself sitting up for a solid minute. (Maybe we WILL see his wave again during a future growth spurt). But, as always, as his body acclimates to his new size, his regression continues and he gets weaker than ever before.
I just can't help but feel that if we can just stop the neurodegeneration, Damian will be able to heal completely. Damian is definitely a fighter. He looks more and more tired all the time, is getting weaker and slower, has forgotten all the words he used to say, and so much more - but his smile is still there. His happy attitude and his excitement for life is still there. And during those growth spurts when his body is given a small push of help, I can seem him trying so hard to progress and be as able as possible. Damian is determined to be here. And I'm determined to make it happen.
At the same time,
I don't know what is going to happen over the next few months.
Watching Damian's skills drop one by one makes me so grateful for the opportunities we have taken to enjoy life with him in the way that's most meaningful for him. On Christmas Eve, we went out as a family and saw the Wakefield Winter Wonderland (a super lit up neighborhood in Santa Clarita Valley) because I knew Damian would be enamored by it and that it could be the last time we could do something like that with him and have him comprehend what he was seeing. It is now a favorite memory for me.
And oh my goodness, I am so grateful we took him to Disneyland in November and watched the Christmas parade [LINK HERE to a video of him watching the parade]. His whole life we talked about how he was meant for parades with his adorable wave that he gave freely and constantly. I would never have forgiven myself if he'd lost his wave before he could use it on every single dancing snowman, reindeer, snowflake, and Disney princess he saw in that parade, along with Mickey Mouse (his absolute favorite) and his friends. I have never seen Damian so blown away than he was on that day at Disneyland. Best. Day. Ever.
Time is so short, friends. Memories are among the most precious things you will ever make in life. They are invaluable. Take that trip. Have that game night. Host dinner for your friends. Take lots of photos and videos - and make sure you're in them too.
And also, let's save Damian. Please.