I've attempted this blog post a few different times over the past month but it felt so weird to talk about Damian's regression when so many wonderful fundraisers and positive outreaches are happening. Among the many feelings I am feeling all the time, sheer gratitude is absolutely a constant one!!!
But I remembered this week that this blog is not meant to be just a campaign communication tool or a major milestone or happy announcement tool, but firstly a journal of what is actually happening and when. As painful as this is, I need to keep track of what is going on. Since I tend to block out not-fun memories, I need to write this down before details slip. I promise I'll end this post on a positive thought, but I need to get this out.
You guys... this is really really really hard.
Damian's regression has steepened over the past month. I'm praying hard that the curve flattens, but in the meantime, Damian has slowed down quite a bit. It's harder to get him to pull himself across the ground. He needs breaks from sitting up more frequently. His eyes don't track things as quickly. When he moves, it's almost like he's moving in slow motion. Not extremely slow, but slower than last week. And that week was slower than the week before that. Ditto the week before that.
Damian has been much more "snuggly," which, a month ago, we celebrated because every once in a while we'd hold him and he would lay his head really sweetly on our shoulder. Now, he most often is a "dead fish" when we hold him - it looks really cute, but we know now that it's him being exhausted from holding his body together rather than just feeling more "snuggly."
Throughout all of this, Damian continues, as much as he can, to be his super sweet, smiley, friendly self. But even Damian's therapists have all independently noted that he is getting weaker, slower, more tired - hearing them all say it out loud hurts because it's a confirmation that this isn't all in my head.
My biggest concern right now is that this new level of weakness is affecting his eating - he's starting to choke on foods he wasn't having issues with before (mainly his favorite food: PB&Js) and I have to make sure he gets tinier bites than he used to in order to keep him from gagging. He has been sleeping a lot more this week, and he can't eat while he sleeps, so with all the therapies and everything else, I have to be really strategic about meal planning so that Damian still gets the nourishment he needs. Even then, he's starting to throw up more and he's been getting constipated more frequently: both are signs that the muscles necessary for digestion are getting weaker.
We finally have an appointment this coming week at Children's Hospital (remember this one that I had major issues scheduling??) with their occupational therapy department to do a feeding evaluation and I have a sinking feeling we're going to need to have a serious conversation about getting Damian a G-Tube (aka a feeding tube surgically inserted directly into Damian's stomach so he doesn't need to eat using his mouth anymore). I knew since the time Damian was first diagnosed that this was surely an event that would happen sooner or later, but I really didn't want to start going down this route sooner than we needed to. On the other hand, choking and gagging on food and drinks severely heightens the risk for pneumonia, and that kind of lung infection in and of itself could be fatal, or at the very least weaken him considerably.
So Where is the Treatment??
I was SO ANXIOUS for September to come because we understood that sometime in September, finally, FINALLY a pharmaceutical company would be meeting internally to decide whether or not they will be manufacturing the drug intended to stop the neurological decline of Damian's disease. To be clear, this particular company already owns this drug (really a molecule patent) and it just needs to be formulated. And the "recipe" is pretty much already written because this drug has been produced for one boy in the past, and they can base the new formulation off of that one. It could potentially take as little as two months to ready this drug if the pharmaceutical company agrees to formulate it.
I think the reason I have been feeling so heavy and dejected and overwhelmed and exhausted and depressed this week (I haven't done much communicating with anyone this week, let alone posted on social media), has been because I've had so much riding on this meeting and had been holding my breath throughout September - now here we are at the start of October and we have heard absolutely nothing from the pharmaceutical company. Not even a confirmation that the meeting has happened yet or not. Meanwhile, Damian is getting weaker without regard to any timelines or unanswered emails or business discussions. I have been scared for months, but the thought of "just keep it together through September, we'll learn more in September" kept me from going too far down the emotional dark hole. This week, with September ending and without any new information, has been terrifying and, unfortunately, spirit-breaking.
Believe me, I am praying - and praying my hardest - that this company gives us some kind of answers this week. I'm hoping that their silence just means they are busy working out a solution and will approach us this coming week with the euphoric news that "everything is now in order, so let's do this!"
If not... I may have to start using proper names.
We. Don't. Have. Time. For. This.
Preventing a Tailspin
Have I mentioned this week was brutal?
It was definitely the most hopeless I've felt in a long time. Even though I'm a natural optimist, I kept internalizing destructive thoughts like, "With all that has been done, with what so many people are doing and helping with – is it still not going to be enough? Is Damian going to survive after all of this? And if not - how could I possibly go on, at all?"
How can I stay positive when my baby is dying right in front of me? How do I keep researching, and campaigning, and working, and playing with and feeding Damian, taking him to therapy, fighting tooth and nail to schedule doctors appointments (seriously, WHY is the process of scheduling what should be a simple appointment time SO messed up!?!) – HOW am I going to keep doing all of this at this frantic pace when Damian's caretaking is only going to continually get more complicated? It's been a totally debilitating feeling to carry this week.
But yesterday I had a strong thought enter my mind.
No less than three times yesterday I heard people quote that feeling joy "has little to do with the circumstances of our lives and everything to do with the focus of our lives." If there's anything I've learned about happiness this year, it is that sometimes creating happiness is a downright challenge. And I have a feeling that for me, it's going to only get harder, at least for the next while. To be honest, feeling happy is not something I'm consciously striving for right this moment, but still – this reminder about focus made me stop and analyze what my ultimate goal is. This week I was focused on the goal being to get Damian treated, for him to be whole again, as if that were something I could totally control – I mean, if piercing desire could control other people, I would have been puppeteering a lot of people this week. The thought of not achieving my goal, especially because of what outwardly appears to be a total lack of urgency from the pharmaceutical company, was absolutely paralyzing.
I need a mental shift. I know Damian was sent here, to me, and right now, for a reason. I can't help but feel that the circumstances Damian is in was planned, as if Damian himself chose to undertake this challenge. The ultimate goal shouldn't be a specific outcome that I came up with, because in the end if God has a certain outcome planned, I can only assist in it, I can't thwart it.
Instead, my goal should really be to fulfill the mission that God has lined up for Damian and me. It's an invisible mental shift, requires perhaps the same work, and I really really really hope and pray that what that means for Damian's life longevity is the same. But from an emotional standpoint, the hope that's going to drive this forward should not be in imperfect people. That will always be risky and will only give me more anxiety. My hope should be in God and that His will will rule out despite my inability to push this campaign forward as quickly as I want it to, despite the pharmaceutical company not moving as fast as I want them to, and despite the fact that this is an ultra-rare disease being fought by a group of humans with flaws.
Years from now, I want to look back at this time and know I did as much as I possibly could to treat my son. After all I can do though, I have to hope and rely on God to do His will. Without hope properly placed in God, there is no other way Damian (and I) will be able to survive this.
You Are My Angels
Thank you all for being my angels. I know God is on our side. And I couldn't be more grateful for each of you who are too. We have started a movement together and our family has been so blessed by your support. I know, God-willing, that we can defeat this disease and that my son can be treated if we continue to fight and spread awareness. We are SO close. So many miracles have already happened and I know there are more on the way. Your messages of encouragement and love have brought me peace and comfort and motivation time and time again through this oftentimes hellish journey. Thank you so so much.
PS, you can bet your bottom dollar that I will be sharing names and contact information the moment it is clear that it would be tactically advantageous to do so.
I love you all.
*Please remember that I am NOT a doctor or a medically-trained professional. Also, if anything I say is in error, it is an honest mistake and I will correct myself as I learn new information.