The BetsyG-Spot

Again, I had planned a post that is going to move out another week. It isn’t well-timed given how I’m feeling at the moment.

By BetsyG

Today I am bringing my 16-year-old son for his quarterly echocardiogram. A year ago, he was diagnosed with pulmonary hypertension, which means there is too much blood pressure going into his pulmonary artery, which goes into his heart.

How does a 16-year-old develop pulmonary hypertension? In Matthew’s case, no one can provide an adequate explanation. However, they have every reason to believe it’s related to problems with his liver transplant, although pulmonary hypertension is not normally a complication of transplant. My son had an emergency liver transplant at the age of 4 for sudden liver failure that occurred for reasons unknown. If you want to try to google that, the fancy term for it is fulminant hepatic failure, unknown etiology. The best they can say is the damage was “consistent with” virus, allergen, or toxin. Which could be just about anything.

If what you’ve heard so far sounds like something I’m making up, let me tell you: my son’s medical history reads like a dark fairy tale. The barrage of rare problems and complications he’s had over the past 12 years are, frankly, unreal.

But I don’t mean to get into his health history. The point is, this is an echocardiogram week, and that makes me anxious even though he doesn’t seem any worse since the last one. If anything, he seems improved.

So the anxiety may not be called for—not particularly—but I still feel fragile and nervous, and sitting in the room while the echo is going on will be worse. During that hour, the technologist runs an ultrasound wand over my son’s chest and takes pictures, and that person’s knowledge of my son’s condition grows by the minute while I sit there, in the dark (literally and figuratively), trying to look like I’m reading. I have the collossal job of not transmitting my fears to Matthew, of not gulping too loudly when the technologist zooms in and measures something “interesting,” of not collapsing in a heap when the amplified whoosh, whoosh sound of blood rushing through Matthew’s body fills in the room.

One of the difficulties for me with these days—and with my life as the mother of a child with chronic health conditions in general—is how alone I feel in it. Realize, first, that my larger concern is Matthew and his physical and mental health, and that I understand fully that this is about him, not about me. I don’t want to get all Munchausen By Proxy Syndrome, oh, poor me, look at me, look at me. In fact, I rarely talk about it to anyone at all. But on a day when I feel like this, I can’t help but look inward just a little bit.

There are two levels on which I feel alone. One is that there is no community of people with a common experience. There used to be a gang of transplant moms I could talk to when Matthew was little, but that was when he looked like any other transplant recipient. And when we went to Pittsburgh where he was treated for post-transplant lymphoma, we had a family of Mennonites to commiserate with; their daughter’s story had a similar arc to Matthew’s. But as Matthew’s complications got rarer, the population of people who could relate to our experience shrank to zero. Trust me when I say Matthew is likely the only person in the world to have had his series of health issues.

I am enormously grateful that my child is alive, and I am not suggesting that my suffering is greater than any other parent’s. I have seen life randomly wave a wand and hit Matthew with fantastically awful stuff and miraculously good stuff. And I’ve seen that wand waved at other children: a teenage girl with liver failure who died days after Matthew had his transplant; a beautiful 2-year-old with biliary atresia who spent most of her short life in the Pediatric ICU waiting for a liver, only to die after two unsuccessful transplant surgeries; a 3-year-old boy with a mismatched, botched liver transplant who died after his father gave him a piece of his own liver to replace it; a 4-year-old with multi-organ failure due to a freak intestinal blockage who was successfully transplanted with three organs and who now looks like any other child; a 6-year-old girl whose accidental overdose with vitamin A necessitated the liver transplant that cured her MSUD, a serious digestive disorder. (Her transplant led to the discovery that liver transplant cures MSUD. I know this because I read an article in the paper about it and realized they were talking about her.)

Of course, there is one parent who has experienced exactly what I have: Matthew’s father. I wish I could say that is a comfort to me, but our ways of dealing with the issues are so radically different, it is not.

The other level on which I feel alone is that, over the past 12 years, I have accompanied Matthew to more tests, procedures, and studies than I could count without his six-inch stack of medical charts in front of me. Whatever he goes through, I want to be with him, to hold his hand and tell him everything will be all right. But when I am anxious and worried as I am this week, I feel especially alone. It’s a lonely life as a single mom anyhow, but it’s during these weeks I most miss having someone to hold my hand, to tell me everything will be all right.

My difficulty this week is perhaps compounded by the fact that I thought I had someone in my life this time who might provide at least a little of this type of support, and I don’t. I didn’t need him to lean on, to take on even an ounce of this burden. It would have been nice just to have someone hold my hand when I needed the human contact, and do nothing more than that. I think that’s all I really want in life: someone’s hand to hold in both good times and bad.

Matthew has an exquisite instinct for survival—physically and especially mentally. His body has been reconfigured and does not function correctly, yet he thrives. The cardiologist nearly fainted when he met my six-foot-tall son, then 15 years old. “I thought he’d be a sickly child,” he said, having read Matthew’s history.

Matthew’s psyche is more healthy than it has any right to be. He has remarkable defense mechanisms that enable him to move on from a crisis relatively unscarred emotionally.

His strength and spirit are powerful forces. In the absence of a hand, I’ll hold on to that.