Ship to Wreck
Note to friend: if you're in a good place right now, maybe save this one for another time. - N
It takes a LOT of energy to keep a positive attitude on the outside when you feel like a sine wave on the inside. Moms hear this and just nod. The modulating comes from so many things. Hormones, kid's hormones, exhaustion, work, holidays, the impending doom of a collapsing democracy, overwhelming disappointment in your peers, a movie, your pet aging, et al. But there are some situations or someTIMES that you can't just float on and put on the face.
So now it's time to talk about chronic illness and parenting. This is a big topic and one post won't do, just expect more to come. This post might have been called "Keep Your Shit Together" but I can't think of a song title about that. The tip of the iceberg for this one is my child's chronic illness which is much more emotional for me than my own. So let's take a breath and then dive in.
When they are born, kids may seem perfect, and many MANY babies are just that. My kids were both perfect. They had "baby issues", but I couldn't have asked for a better duo of lovelies. And being a baby parent is still hell. The constant second guessing and mountainous responsibility. They are wonders and challenges, I can only imagine that time if you know your child has a developmental delay or genetic disorder. Kudos to those parents who deal with chronic illness in their babies, they deserve our full-throatedsupport and to never have to worry about their child's healthcare because it is their human right. Period.
Our story begins a little bit later, we made it all the way to eleven before chronic illness rears it's head. For teenage boys, it can be a troubling time when things start changing. Maybe there are some first time GenX parents who hit the nail on the head for their kids in the preteens. I would have given anything for this time to go smoothly for BOTH my children, but my son experienced a cacophony of mysterious, scary and painful symptoms with a heaping helping of hormones on the open wound that is puberty.
When you don't know what's happening but you're for goddamn certain it shouldn't involve ER visits, as a parent you go into rescue mode which may include hyper-vigilance, bouts of hidden rage and fear, and plenty of guilt for missing red flags. I'd love to tell you not to do that, and maybe your coping mechanisms are in good order. Just be gentle with yourself when you're NOT punishing yourself. And always keep your eyes on the prize, survival.
I'll go into more detail about the illness itself later, but for him it was surprising and we were in no way prepared for the nearly 3 year battle that ensued to get to a full diagnosis and a good (not great) treatment plan. He dealt with the pain, the intense phobia of needles, the misunderstanding on our part and the periodic lack of control of his disease that made sensitive school years that much less enjoyable. And he had support from many teachers, nurses, specialists, family and friends, but there's no use sprinkling powdered sugar on a cow patty. It was rough.
I'll also briefly shout out to all my hidden illness warriors out there. Of course it makes life easier at times and the ability to forget your problems can be a salve, but it also makes it harder to get the care or explain why you need the support. Who knew you could have imposter syndrome ABOUT your serious illness? It's a thing. Patient advocacy is a full-time job for parents of kids who have these diseases, whether common or rare. We need a hug and a nap at least, and again universal healthcare.
So, after all this parenting baggage which is like a 3D painting that you are still only seeing in 2D, just know that Florence + The Machine has gotten me through more trips to the hospital or sleepless nights than I care to count. So I'll leave you with this and of course to be continued...
"And, ah, my love remind me what is it that I said? I can't help but pull the earth around me to make my bed. And, ah, my love remind me what is it that I did? Did I drink too much, am I losing touch? Did I build this ship to wreck..."
Til the last drop - N
