Welcome to Planet Moodswing! Ride the exciting roller-coaster of dueling emotions, test your stamina on the tower drop of depression, swing to all new heights on the sky flier of hyperactivity. Every moment is a new adventure!
I'm tempted to paint Gabe like an idyllic child, to give him that perfect veneer that we think comes over Sick Kids. You know the saintly glow I'm talking about: the one that seems to surround every child on every St. Jude's commercial or G105 telethon ever. Part of me doesn't want to share anything that might be seen as negative because I think I'm afraid that somehow we have this subconscious opinion that if you're not perfect, you have it coming. This is exacerbated by the fact that I recently heard a second hand comment from a friend that another friend didn't understand why this is happening to us because we "seem like such good people." As if, for some reason that they are unaware of, we have this karmic retribution coming to us. I've already talked in my last post on spirituality about this subject: suffering is simply a part of life, a requirement of the human condition, not punishment meted out for our failures. But, it strikes a nerve, nonetheless. It makes me, on some level, not want to admit that Gabe is just a boy like every other boy. He's no more perfect than you and I.
Gabe is a beautiful, wonderful child. He is bright, he likes to read,and his performance is usually above grade level. He cares about others, he's funny...or at least, he tries to be; we might not always get his humor. He wants to be a firefighting pilot when he grows up because those are the two best jobs he can think of. Being a pilot lets him fly, being a firefighter means being on a team of superheroes. Gabe's older sister is our independent spirit whereas Gabe needs more approval from others. He likes to be held, he likes to hug, he likes to be underfoot. Gabe is an active little boy who loves Nerf guns, soccer, rock climbing, and building forts in the woods. Right now, as I type, he's outside teaching his big sister to play a war game with the other kids of the neighborhood. I heard him enthusiastically explaining it to her when they came in to get her a coat. He loves Superman, video games, and Bible stories. His favorite color is hot pink and he'll proudly wear it no matter what others think about boys and the color pink.
Gabe can also drive you crazy. His propensity to be underfoot for attention means that sometimes he can be TOO underfoot and sometimes the grown-ups have to say "kid, go play! Go be a kid!" He is a typical little brother and he and his sister bicker over silly things: who ate the last doughnut, who left the bowl of cereal on the table, who went in who's bedroom, who's turn it is to feed the dog or clean their bathroom. He has had a great deal of trouble this year with ADHD symptoms that are typical of boys with ALD and his teachers and I have talked many times over this school year about Gabe failing to live up to his full academic potential because he didn't read the question or didn't focus or lost his papers. He is clumsy, falling and muddying up or tearing his clothes frequently. He breaks things by accident through curiosity or playing too roughly. Sometimes he makes bad choices. Some of these things are because of his genetic disease and some of it is just normal kid stuff.
Gabe is just a regular child with all of the shades of grey that come with being a human being. The good in him far outweighs the negatives. He strives to be one of the good guys, but he's not somehow especially beatific because he has a genetic disease and he's not a bad kid who is being karmically punished for his behavior. He's just a regular, wonderful little boy who's family and friends love him. Just like any little boy.... but he's MY little boy.
That brings us to his steroids.
What is it like to have a child on steroids? Mom and dads, sisters and brothers, welcome to the wacky world of Planet Moodswing. Before the steroids Gabe struggled with anxiety and depression. As I pointed out, he can be unfocused and hyper. I kind of expected to see this stuff drop off or chill out since the hydrocortisone is replacing hormones that his own body is failing to make in an adequate amount. I thought this would mean a more emotionally balanced Gabe. I was wrong. Now, at any given time, Gabe could Hulk out or turn into that guy on the "Best Cry Ever" meme. It doesn't last for very long, but it takes a bit of patience. His mood lability has increased rather than decreased and he can suddenly become aggressive, agitated, angry, or have intense inappropriately sad or guilty reactions.Here are a few examples of what I am talking about. When he accidentally hit me recently, he practically crumpled in tears. "Oh, I am so horrible and bad! I accidentally hit my mom!" Everyone reacted with surprise and reassured him that not only was I totally unhurt, but didn't care at all! It was just an accident! When he threw a paper airplane and hit some figurines on the mantle, I admonished him not to throw things in the living room. Gabe responded by crumpling and ripping up the airplane, then storming out of the room. When his sister was playing with him and wanted to take a turn, he flipped out and called her a jerk. I took him aside so he could calm down and talked to him about taking turns when you play together. He apologized gave her a turn, and they continued to play and have fun together for quite some time. The intensity and sudden onset and disappearance of these reactions are not like Gabe. They are consistent, however, with the side effects of taking hydrocortisone.
I don't know yet if these symptoms are temporary or if Planet Moodswing is a long-term destination. I plan to bring it up with his endocrinologist the next time I talk to her. One thing is certain: Gabe needs to take steroids. His adrenal glands are barely functioning and the cortisol that they are supposed to produce is a necessary thing. Since he doesn't make enough himself, it has to be replaced with medication. The alternative is terrible: without taking the medication, another adrenal crisis could be deadly. Therefore, requiring extra patience or not, the side effects are worth it. We can handle a little mood instability! Besides, if it makes anyone feel any better, The Beast and The Hulk were valuable members of their respective superhero teams.
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