On Sunday I took one of my sons to Emergency, on Tuesday we got home again. This is not unheard of, one of my sons has a medical condition, hydrocephalus, that carries with it unfortunate realities. A system of shunts with a valve keep the pressure in my son’s head normal. A great step forward, but mechanical systems have a way of failing. It’s not unusual for children with hydrocephalus to have several surgeries a year.
We’ve been lucky, only five surgeries in thirteen years. It’s hard to look at that number and feel fortunate, but I try to remind myself that in could just have easily been thirty-three surgeries in thirteen years. I don’t tell my son he’s lucky, however. He’s not. He just happens to have a fewer systems failures than some.
Normally at the hospital I’m very patient. Things tend to move slowly once the initial emergency is over and normally I go with the flow. This time however I found myself to be impatient. I know how long it takes to get discharged, but this time the wait wore on me. Heck the whole process was tedious and sleeping on a bench was painful. If you can call it sleeping.
We were in the hospital only three days, but it felt like forever.
So I’m trying to figure out what I learned from the experience this time, and I’m not coming up with anything good. I’m having a hard time feeling grateful for the expertise of the medical staff. They are darn good at what they do, and they’ve kept my boy alive and well.
So what’s wrong with me that I’m feeling like life’s unfair? Of course life is unfair, I’ve yet to see anyone come into this world with a guarantee that life would treat them fairly. I’m feeling put out. I’m doing my part to be kind, warm and generous (I think) and what I’m getting in return is three days in the hospital with a child who was terrified that he would die during surgery.
So you see I’m having trouble. I’d like to be able to find some nugget in among the crap. And I guess the real nugget is that my son is alive, his headache is gone and we are back to normal. But what I want is some kind of personal revelation. Something to take away from a bad situation.
I guess I’m not getting what I want this time. And maybe that’s what I need to learn. As the Stones sang – you can’t always get what you want. Only this time I’m not even sure we’re getting what we need.
{ 7 comments… read them below or add one }
Thanks everyone for the kind and insightful comments. I so appreciate that you take the time to “listen” to me spill my guts, and the kindness to send wise advice and FGBVs to me. It’s lovely. It really is.
Hello Kate,
Phew!! That must have been a frightening experience even if you have been through it before.
Perhaps the nugget is that it is okay to admit to how vulnerable and afraid you feel.
Being present with what is in as mindful a manner as we can manage is all that we can do in those moments. Later we can bring gentleness to ourselves for how we handled the situation and to our less than helpful thoughts about what happened.
When we can get out of our own way about how we should be coping etc., our experience can be with just what is.
I am so glad that you are both home now and everything turned out OK. A great big hug to both of you with lots a love!!!
It’s great that it went well, it’s great that you’re both home safe. But it’s not great that it happened in any shape or form. It doesn’t help that anyone else has it worse than this – this is hideous for you both now. My love goes out to you both.
I don’t know that there is anything more that you can get out of this than that you love each other. This is what has to be endured , because as yet there is no cure. That is unfair, really unfair. But you have sat with him through this , loving him, which he must know through to the heart of him. Now you need to get some of that love to help fill you up – because as a parent it’s always flowing back out again.
Love, Hugs and every FGBV.
My heart aches for you. I only had to sit by while my child had surgery once, but it was terrifying. She developed a life-threatening sinus infection and had to have surgery to clear out the infection behind her eye, perilously close to her brain, and then virulent IV antibiotics for the next 11 days. We had to sign an agreement not to sue if the medicine destroyed her bone marrow. Thank God and excellent doctors, she lived, but it was touch and go for days.
It’s always harder to watch someone you love go through this than to go through it yourself. I will pray for you and your son.
You said in your Labor Day blog:
“It’s easier to shut down and move through life without feeling than it is to acknowledge when it’s just too much. And sometimes the guilt, responsibility and sacrifice is too much. It just is.”
We’re not supposed to say things can get to be just too much, but clearly they can. Denial takes a lot of energy, and it sounds like you’ve used your energy up taking good care of your son. That’s his nugget, that he has you on his side.
First, fgbvs and hugs.
Second, it’s ok to not feel happy and grateful. You and your son are in a seriously sucky situation. You don’t always have to pollyanna and look for the bright side. It’s ok to take time after surgery to say “crap, that was awful” and grieve for the lack of normalcy. It doesn’t mean anything is wrong with you. Honestly, if you were being all pollyanna all the time about this, it would be weird. There’s having perspective and there’s repressing. You’re aware that it could be worse, but you’re also aware that it still really sucks and being upset about how much it sucks. That’s ok.
Can you and your son do something that the two of you love over the next week? For my dad and me it would be a Buffy night with pizza. Maybe you guys can do something for the two of you to reconnect and recognize that the surgery went well?
You poor dear. I’ve been through hospital “issues” with my mother (you name it, she has it), so I’ve an idea what you’ve been through the past few days. I’ve been known to crawl up on the counter of a nurses station and scream at the top of my lungs to get their attention.
That said…you’ve brought up a good point. There’s that whole “want vs. need” issue. How does one discern the difference? It’s a question my therapist posed years ago, and one with which I still struggle.
Anyhow. FGBVs to your son. Glittery-comforting sprinkles to you.