My heart hurts as I finally sit down to write this long-overdue post. I think I literally stopped writing because I couldn't put my heart on paper adequately. Rather than trying to say the right words though, I am choosing to prioritize just sharing the story because I recognize the value in the process and the learning that takes place throughout it. I'm so tired of it though...and so tired in general as I try to wrap my head and heart around everything. I never stop thinking about it.
About a year ago, we started noticing some dramatic behavior changes in Matt--he started to become increasingly agitated, easily frustrated, less inclined toward preferred activities, harder to satiate, impossible to please, and generally unhappy. The mood in our house started to decline because when Matt isn't happy, ain't nobody happy since he makes it his mission to express his displeasure in the loudest ways possible.
Literally the day before schools closed and everything started shutting down (pandemic), I took Matt to see his psychiatrist to talk about a med change. I took all three kids and the doctor asked Adi to describe what our house I like. I was in tears as I started to recognize that, though I take the brunt of Matt's aggression and displeasure, it was profoundly impacting my other two kids and I couldn't even see it because I was so blinded by the behaviors in front of my face. My own lens was blocking my view.
We started trying to mess with meds and had a front row seat as thing after thing worked or didn't work. Matt stopped sleeping at one point....so we had to put him on a mood stabilizer that had a sedative in it. We went night after night with literally minutes of sleep (we would sleep in shifts) and then watched as Matt would claw his way through the day, so exhausted that he was hyper and literally unable to make himself sleep. When we got that under control, the next thing started...and thus we cycled through challenges and behaviors.
At one point, the behavior of choice was screaming. I'm not talking roller-coaster scream of excitement. I'm talking ear-splitting, horror movie, I'm being stabbed with a thousand knives screams that last long and are so loud you can literally feel it in your insides. Our ears hurt. Todd started to feel like he was losing his hearing and saw a specialist who made him ear plugs to block out the high-pitched sounds. The other two kids would just plug their ears or scream back at him. I wanted to hit him or hurt him to make him stop, and that is a VERY scary place to be as a parent--to wonder when you are going to actually lose control...not IF you will. I would crumple into a puddle of tears when it was at its worst and hide....trying to shut it out. We even started to look into the possibility of surgery on his vocal cords because we couldn't figure out how this could possibly be anything but totally damaging to him as well.
The thing that stunk the most is that I realized in the middle of all of this that I was so worried about myself and how it was impacting me and the other two kids (as well as Todd, though he's a big boy and told me in no uncertain terms how he felt about it), that I forgot to feel sorry for Matt. I forgot to think about how painful it must be to have something to say and not be able to do anything but scream to express...and then to have someone try to shut that off. It started to feel like a tick--what a horrible tick to have!
Over the course of several months, it finally started to, almost imperceptibly, decrease. We started to realize he wasn't doing it as much or as often and that our attempts to ignore the behavior were actually paying off a little. Then came a new set of struggles.
Matt started peeing his pants several months ago. He would just randomly, after going potty, pee again. I started to wonder if it was a loss of bladder control or something else...it felt like something else. Then he started pooping his pants during the day (highly unusual for him--used to only poop in the morning) and I realized that it might be an inability to differentiate between the muscles used for each--that he may have felt the urge to poop and when he pushed, pushed out pee as well. After changing his pants a million times a day, I finally put him in pull ups during the days where he was peeing more often and then, gradually, he ended up in pull ups the entire time. He has now regressed in his control to the point that he sits on a chair and tries to push out pee. We can't go 30 minutes without finding pee in his pull up. He seems to have completely lost control and constantly pushes out pee.
Add to that the fact that his speech and ability to articulate have declined as well. I saw a video the other day from 2018 and realized just how well he was enunciating his words. I bawled because I hadn't realized just how profound the regression in speech has been until that moment. He is drooling more, slurring more and more, and just struggling to pronounce things in a coherent way like he used to.
Todd and I have started to have those marriage-rocking heart-wrenching, soul-shredding conversations that no parent ever wants to have about whether or not we can sustain what we have long term. Matt has become so strong that we can't physically manage him when he doesn't want to be managed. If he refuses to do something, there is nothing I can do with all my muscle and force to change his course or trajectory. He scratches, hits, and has knocked me over on a number of occasions. He has injured me more than once in a way that scares me...not because he intends to, but precisely because he doesn't. And I can't keep up. Todd watches this and worries, but can't do a thing about it while he is at work and I think that worries him.
I write this not so that anyone would feel sorry for me if they ever read it, but to point out a few dramatic lessons that we have learned through this process.
1. Puberty sucks. A lot of this could be explained by puberty. Not for the faint of heart. Wish we could skip it.
2. My role is Mom. I keep trying to figure all of this out on my own. I can't. Why do I keep thinking I need to? Neurology has instructed us to do an MRI to rule out a brain tumor. I have found (finally) a developmental pediatrician who will hopefully jump in the game as QB. I have relied heavily on therapists, school specialists, his teacher, and our angel respite provider who has made a heart-connection with Matt that I can't even explain, but has blessed our lives profoundly because we have a reprieve with her help. But I can't even be her. I can just be Mom. Mom is enough. I am enough. It's ok to not only accept, but seek out that help.
3. Matt's life is teaching us SO many beautiful lessons that we couldn't learn without these trials. I have always said that Matt saves us from us--we would be so different, distracted, misaligned at times without the grounding force of realizing we have a unique, special spirit in our homes that robs us of our ability to be anything but totally connected to him and each other.
4. God is SO MINDFUL of this....every part of it. People popped up, help came, and no desperate cry ever went unanswered, in both direct and indirect ways. We always had the help we needed, or the stamina when there was no help. Matt would miraculously be better when we had our worst days emotionally. Somehow, someway, we were never left alone or abandoned, emotionally or physically (and especially not spiritually) throughout this entire process. I read an amazing quote the other day: "Given the tremendous importance of these virtues (virtues that the Savior possesses) now and in the world to come, should we be surprised if, to hasten the process, the Lord gives us, individually, the relevant and necessary clinical experiences?" God is trying to make something of each of us, individually and collectively, and this current clinical has the potential to hasten the growth He is so carefully nourishing through this specifically trial.
5. Comparison murders peace. I have found myself resenting parts of this clinical at times, envious as I watch others in the pandemic read books, do puzzles, hike, relax, spend time together, bond, rejuvenate. Obviously that's not all that happened, but the slower pace forced upon us had so many beautiful aspects to it....and those same gifts represented what felt to me like a prison. The slower pace sucks the life out of Matt--he needs a plan. He never is distracted by himself. He never leaves you alone. He cannot, for more than a minute two (not exaggerating) entertain himself. So the lack of other entertainment meant constant torture and unrest in our home, thus increasing the behaviors and exacerbating the problems, raising the stress and heightening the emotions that were already pretty dang intense in our home to start with (we are a gaggle of passionate geese). When I let myself go down that trail of self-pity and situation-loathing, comparing myself to others or comparing my reality to a picture of what it might be like without Matt, I lost all chance I had of finding peace and joy and even pleasure in my life. I became like a shell. I had to consciously shove those thoughts out of my mind and replace them with new ones. Not that I always did that perfectly, but when I didn't, I would pay an emotional price.
So here we are in a holding pattern, unable to touch meds until we rule out a brain tumor. Once that is ruled out, we will tackle the possibility of seizures again (long story, but his neurologist said he no longer thinks Matt is having seizures....I might disagree. Jury's still out). After that, who knows, but I'm sure I will know when I need to know because, back to point #4, somehow, someway, just when it is needed, help (and in this case, answers) will come. I have faith. And I need a nap.
