You might remember (or not!) that earlier this year I was having an emotional time in the days leading up to Damian's 3rd birthday (it was in May). There were a lot of heavy reasons for this, but one of the very stressful ones was that Damian's access to therapies would be cut off.
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I don't know how other states run their Medicare, but in California, babies and infants with developmental delays and disabilities have access to "Early Start," an early intervention program that pays for any necessary therapies until the child turns 3. After their 3rd birthday, that access to resources is turned over to the public education system. AKA, the only free resource to us would be if Damian went to preschool (where he would be put into a special needs class - I did a full tour and met the teachers and everything, but even after a lot of discussion they said I would not be allowed to stay with Damian in the class and that's just a non-starter for me when Damian is on an oral medication and also has such subtle vomiting triggers).
Up until his birthday, Damian was going to 10 hours of therapy every week:
Physical therapy (2 hrs/wk)
Occupational therapy (2 hrs/wk)
Feeding therapy (a subset of occupational therapy - 1 hr/wk)
Speech therapy (1 hr/wk)
In-home child development therapy (2 hrs/wk)
Group therapy (kind of like a preschool program for 2 year olds with delays or disabilities - 2 hrs/wk)
The thought of losing all of that invaluable time with the best therapists focused on helping Damian (especially when we had just started the "Brain 1.0" experimental treatment) was honestly mortifying. Of course, if you have private insurance, you can continue going to therapy and just pay a co-pay each time you go (depending on your plan). But -
... In writing this post, I keep trying to explain what we had instead, and it keeps being too long-winded and in the end doesn't even matter. To summarize: I spent month after month talking with multiple insurance companies and the state health care system entities (which are all a nightmare, by the way) to try and work something out. It was practically fruitless. Damian's birthday came on May 24th and his scheduled therapies were terminated that day. I was totally heartbroken and I know everyone at the therapy clinic was too.
Long story short: We're BACK!!! WOOHOO!!!!!!
Through one of Damian's insurance plans, we finally got approval to get therapies covered (we will pay a co-pay for each session) and I could not be more relieved about it. It's felt like forever since we've been in therapy (3 months!!!) and although I'd been trying my best with him at home, Damian simply hasn't been exercising as hard or as frequently as he was when he was in therapy — and I'm just not a therapist. I'm just not.
The wonderful people at our therapy clinic were so excited to call me and let me know they could enroll Damian again! This last week was our first week of getting back into it. Not every therapy has been put on the permanent schedule yet, but I think it's probably good that we're easing back in to the workouts...
In the past week we've gone back to physical, occupational, and speech therapy and Damian was just not used to working that hard. He's cried in almost every session (and in some cases the entire session) but that is exactly how he was when we first started going to therapy over a year ago. I'm positive that in a few weeks he will be used to going again, used to exerting the effort, and he will enjoy it just as much as he did 3 months ago.
I am so so so glad we're back. I almost feel like we haven't fully seen what this Brain 1.0 treatment can do for Damian yet because we haven't been in therapy almost the entire time he's been on the drug. While it's hard to tell how much the treatment has improved Damian's cognitive ability, there is no doubt that it is allowing him to actually gain muscle, so I'm hopeful that getting back into an exercising routine will really help him blossom in that department.
This last week, during the many times in the clinic that I had to pick Damian up to console him (exercising is hard!!) I remembered how hard it was for me to see Damian cry in therapy for the first time. Of course all I want is for Damian to be happy and it breaks my heart to see him cry, but now I have that perspective of knowing the tremendous good that will come from therapy, knowing Damian will enjoy it and genuinely love it in a few weeks - and most of all how much it will benefit Damian and how much better off he will be from doing something that seems so hard right now.
One of the times I was holding Damian and trying to encourage him to calm down and keep going, I had the realization that maybe God, who sees the full picture of our situation, feels the same way towards me. I gotta be honest - I am tired. I've been at this for over a year now. Fundraising is hard. I did not think it would take this long to raise $3 million. Managing Damian's medical team, and mind-bogglingly having to fight for every step of progress with these treatments is infuriating and so so tedious. Not knowing how this is all going to end keeps me up most nights. I am constantly cycling through intense emotional levels of grief, anger, determination, hope, fear - over and over and over. I wish so badly I could just snap my fingers and just immediately make everything the way I want them to be.
But maybe this whole experience for me is like Damian's therapy or the many medical scans, exams, and procedures I feel like I am responsible for putting Damian through. Maybe it's somehow important that this experience is as challenging as it is. And maybe it's not only going to be just ok in the end - maybe I am actually going to be better off for going through this the way it's happening, major hiccups and all. If that is the case, I need to follow my own encouragement to "calm down and keep going." If Damian can do it (and he IS) then I can do it too.
Damian is such a trooper and he teaches me so much. With all that I feel like I put him through (and the irrational guilt that comes with that), Damian has never shown any kind of resentment or negativity towards me. He still seeks me out when he needs comfort. He still trusts me. And he always has so much love and hopeful optimism in his eyes - that positive light he carries just doesn't quit. Such a special boy, my Damian.