Being a parent isn’t easy, not even in the best of circumstances. Every family has its own share of trials, with new situations cropping up in the most inconvenient of times — which is whenever trials happen. If your family comes with built-in trials, then… well, things can get tricky.
I am finding myself in one of those tricky situations and I don’t know how I’m going to cope.
My family is composed of a parent and two young men, each with our own special needs. Because of our special needs, we have a lot of coping mechanisms in place to help us navigate the world with as few meltdowns as possible.
And, now, a new situation is facing us; one that I had not anticipating and my brain is caught in an infinite feedback loop, trying to sort the information, but failing because of circular thinking and a muddied thought process.
It appears that my 17-year-old has developed one of my neurological conditions… but not exactly. See, this is the tricky thing about lupus. We don’t even know how it works, or what causes it. Treatment is very tricky. We think it is hereditary as it is auto-immune, but we don’t know for sure. We think it is hormone related because way more females than males get it, but we don’t know for sure. We know it attacks any organ in the body, at any time without warning, but we don’t always know if it is the lupus that is causing something or if it is any number of secondary disorders many people have with lupus.
This makes treatment even more difficult, because when I get migraines — as an example — we never really know if it is the lupus that is mimicking vasculitis that is causing my migraines, or if it is actually my vasculitis that is causing my migraines. Each cause has a different course of treatment.
But because I have boys, I’ve never seriously bothered to worry that one day they may develop lupus because they have inherited my faulty genes. That was until this last couple of weeks when a doctor informed us that my 17-year-old is probably developing chronic migraines, the cause of which is yet unknown, but it is a good possibility that he inherited them from me. I was not much older than he is now when I had my first TIA (mini stroke).
Then, tonight, it happened. His first of what could be many trips to the emergency room for treatment, after a week of multiple doctors appointments, followed by a week of trying to manage migraines that prevented him from walking with OTC medication, to prescription migraine medication, to tonight’s hospital visit after all other courses of treatment failed.
After the first doctor’s visit we joked about how it was my fault. That is one of the ways we cope in this house. Jokes. We also use self-deprecating humour. I say that I should never have bred… I say this only partly joking. I’ve said it before: Had I been diagnosed with lupus prior to having children, I would have chosen not to have them.
As parents, we do tend to blame ourselves for these things. Whether they be a hereditary physical health issue, or a hereditary mental health issue, we blame ourselves. Some people on the outside judge us for that. I always want to tell those people to fuck off. We do not suddenly stop being human simply because we’ve had children. It is a natural human response. It is what we do with those feelings, how we cope with those feelings that matter. Not the fact that we are having those feelings, and voicing those feelings openly and honestly. I strongly believe we do not do ourselves any good if we deny what it is that we are thinking and feeling. It is only by admitting to them, making them open, naming them, that we can even begin to tackle them and deal with them.
But, I don’t yet know how I’m going to deal with this newest situation. Some may be thinking, “Bah. It’s just a migraine. No big deal.” When one is 17, had a migraine for over a week — one rendering them unable to walk — a migraine that required ER treatment, and a family history of lupus and strokes — I had my first TIA when I was 19 and a full-blown CVA at 30 — it isn’t just a migraine. Because of family history, because of his age, it has to be taken a little bit more seriously.
Now, he has a bunch of blood tests to look forward to, more doctor’s appointments, maybe a few specialist appointments… and at this moment, all I want to do is tell him how sorry I am that I passed on my faulty genetics. But that isn’t going to get us through this situation.
I’m also mentally kicking my ass for not demonstrating proper self-care. He is like me. He doesn’t complain until it is very bad. And even when it is very bad, he doesn’t take it easy. I taught him that. It doesn’t matter that when he was little and not feeling well, I’d make him rest. Because while I was telling him to rest, I was too busy doing way more than I should have been doing when lupus was trying to kill me. It was a very bad case of “Do as I say, and not as I do.” And now, I see him pushing himself through the pain harder than he should, and I wish I could turn back the clock.
This was my mistake. We all make mistakes. But, I’d like to fix it.
It was also a little bizarre — for lack of a better word — having to answer his question, “What do you do when you get these migraines? Before you end up in the hospital? I know you don’t always end up in the hospital when they happen, so what do you do?” Yeah… he’s never seen me take care of it, because I tried way too hard to hide my illnesses from him. This also causes me to, once again, blame myself for passing on my genes, because he knows that I can give him good advice on this. I’ve been there, done that, more times than I could ever possibility count.
And now, I don’t even know what I’m thinking again because I’m back in the infinite feedback loop. I’m back at the beginning blaming myself, when what I really want to do is move forward, and work out the best possible plan for the family to cope with not only the physical and pain part of this problem, but the emotional part of it, and teaching him that, just like when I am sick, we take things day by day.
Both my oldest and I are the type of people who need to know. We hate waiting for answers. And we are now stuck in that period where we have to wait for test results, and wait for visits to the hospital, hope that the next migraine is easier to manage, and in the end, we may not get the answers we need. Or, it may take more time than we want.
It doesn’t help that our family doctor — a doctor who has been my primary physician for 30 years and his since the day he was born — just retired, leaving us with no primary care physician. So, we have to use an interim doctor, or the walk-in clinic.
I wish I had access to similar stories that I could read. I want to know how other parents who have lupus, or even something similar like MS, dealt when their children started to show similar symptoms, and the doctors paid extra attention to them because of family history. I don’t want to talk to anyone. That doesn’t help me cope. It makes things worse for a number of reasons. But I want to listen to, or read, other stories. I just can’t find them.
How would you cope? I don’t know if you could even place yourself in my situation. I don’t know many people who are in my situation. I don’t know many people who are in my situation AND have a brain that processes information like mine does. That also makes a big difference. I hear parents talk about “normal” family struggles and situations that are similar to ones my family has gone through, and I rarely relate. They don’t affect me in that way.
I don’t know what the point of this post is. All I know is that I don’t have a plan. I need a plan. But my brain is stuck in this stupid infinite feedback loop as my family has to prepare for who knows what, while hoping for the best. I don’t do well with unknowns. And I’m worried that I am going to fail my child in a time when he needs his own answers, and help him create his own coping strategies as we embark on this newest diagnostic journey.