Today started out like most weekend days or the days of COVID lockdown. At 5:30 am, Tommy was standing beside my bed waiting for me to startle. This morning, he greeted with me with a very flat “Happy Thanksgiving” rather than the usual “Mom, I’m awake.” I told Tommy he could go downstairs to watch tv or play in his room, but I was going back to sleep. From 5:30-8:00 am, Tommy returned every 20 minutes to ask me if I were getting up. Tommy NEVER asks if I’m getting up. He has no interest in my morning routine, especially where he has a strong aversion to coffee and coffee is essential to my mere existence.
By 8 am, I realized that last night, I told the boys they were not to play any video games (which they can only play on weekends, but it’s Thanksgiving, so I caved) until I got up. That’s why Tommy was wishing me a Happy Thanksgiving and nagging me to get out of bed! I should have known. I capitulated; I gave the boys the go-ahead to use their Switches. But for the record, I can’t hear about Mario, Luigi or Bowser anymore. I’m saturated.
I know this Thanksgiving was much different than years past for so many families. Yet, we have so much to be thankful for; I know I do. This year has certainly been one for the books. As I reflect, I’m so very grateful for the time I got to spend with my husband and children while I worked from home until this September. As I look back, perhaps it was all the time I spent with my sons that made my spider-sense super in tune to Tommy.
Beginning in June, I began to get a nagging feeling that something just wasn’t right with Tommy. I couldn’t articulate what I was feeling. By the end of the month, I started to think he looked different. I asked his teachers if they noticed anything different. They did not. I chalked it up to only seeing him via Zoom.
In July, I started to express my concerns to his medical team at MGH. They were laser focused on Tom’s compromised immune system amidst a pandemic. My concerns didn’t fall on deaf ears, but Tommy’s immune deficiencies were far more pressing than my gut instincts and perceived changes. Perhaps I was starting to go a little stir crazy being stuck at home all these weeks. Nah, my gut kept telling me otherwise.
By August it was apparent that Tommy was losing weight despite his high calorie g-tube diet. He also was not growing in height. He was exhausted all the time and didn’t have the stamina to keep up with his brothers. Mid-month, he had his first in-person appointment since January. Immediately, his doctor noticed Tommy looked different. I knew it!! I just didn’t know what it was.
What we now know, after a long autumn of testing and more specialists, is that Tommy has an ascending aortic aneurysm. We’re still in the testing phase before a decision is made about treatment. Cardiac conditions coupled with immune deficiencies in the context of coronavirus is cause for worry. When it pertains to a nine year old autistic boy, it’s frightening.
Despite all of this, I’m so thankful for the hellish year 2020 has been. My parents have dropped everything to support and help us. My two brothers have each been rock solid support in their own ways. I have the most amazing partner in Eric. But once again, it’s the frontline medical staff at MGHfC that are my real heroes. They’ve gone through hell over the last 9 months. Some of the stories they’ve told are harrowing and heartbreaking. I’m in awe of them and their selflessness. I’m also relying on them.
Today, at dinner, Will wanted each of us to share what we are most thankful for. When it was my turn, I told them I was thankful for good health and all the love I feel from friends and family. It was cheesy and a cop-out. I simply didn’t have the strength to speak my heart in that moment.
I found myself staring at Tommy most of dinner. He has been able to tolerate plain baked chicken in addition to his elemental formula (believe me, I thought for a time the chicken was the culprit in his recent spiral- his doctors entertained that idea, too). He seemed to be a thousand miles away and deep in thought. It didn’t take long to know what he was thinking about.
Earlier in the day, as I was elbow deep in a turkey, Tommy asked me to purchase a mod to upgrade his Super Mario Smash Bros. game. I told him it was $5.99 and you needed a credit card, he’d have to talk to Dad. As Tommy walked away, he told me he saw Santa in a credit card commercial on tv (the one with John Travolta and Samuel Jackson, I presumed). Tommy also doesn’t say things just once. He says what he has to say, and then he repeats it once or twice, or four times, to himself as he stims.
Later, just after dinner, Tommy asked what you get when you have a “5, a period, and two 9s.” I was doing dishes, but I knew where he was going. No one responded. Shortly thereafter, Tommy returned to tell us what the mod for his game required. Again, no response. And then, as innocent as can be, Tommy said he was asking Santa for a credit this year so he can swipe when he needs something. I lost it. After all the stress and worry, that laugh was much needed. Tommy stood there straight-faced and perplexed as to why we were guffawing so heartedly.
I love him and I’m so thankful for him, his brothers, Eric and everyone who is part of our village. I’m also so immeasurably thankful for some of the world’s most brilliant doctors not too far from us in the medical capital of the world. They work tirelessly, but this year has been extraordinary. I wonder if they know how grateful so many of us are for their expertise and efforts.
Wishing you all many blessings and a very happy and healthy holiday season.
P.S. What’s in your wallet? (I dare you to not think of Tommy the next time you see that commercial.)