Disclaimer: This is a thoroughly depressing, self-absorbed post, written in the ICU. Read at your own risk.
I’m going to do what I said I didn’t really want to do and write a post about something other than autism. This is not to say that I don’t enjoy writing about other things. I do and have. It’s just that I’ve really tried to hold firm to that blogging guideline of defining your blog and sticking to it. But something has happened that has removed autism from my mental train completely. And it’s all bottled up inside my head with nowhere to escape but here.
Twelve days ago, I received an anxious call from my father’s secretary. Apparently, the guy who mows his lawn saw an ambulance carry him away. Having a terrifying clue what had happened (he had a stroke 10 years ago), I got my husband to drive me to the hospital and found my dad in the emergency department with stroke symptoms. In short time, a CT scan revealed a very large hemorrhagic stroke. A LifeFlight chopper was called, and we took off for Shands – where he had been accepted to their NeuroIntensive Care Unit. I didn’t go further than a hotel a couple of miles up the road for 8 days. A week into the stroke — though doing amazingly well neurologically — he developed some breathing complications related to just being in the ICU and has been completely sedated and on a ventilator for several days now. All predictions from his neurosurgical team are that this is sort of par for the course for ICU. And they have repeatedly stressed how great of shape he is really in – no apparent neurological or cognitive damage. Most people in his should would be dead or in a coma. He is very, very lucky.
But it hasn’t been an easy ride. Each day there is some new test, new tube, or new worry. First and foremost – pressure on the brain. Then there is a period of danger called a vasospasm window, the time period patients are at risk for what are kind of aftershock strokes. Blood pressure crisis one day, oxygenation the next. Fever. Among several other concerns. If I hear two steps forward one step back one more time I’ll scream. But it is all too true and patience is the only option available.
I’ve seen some awful things he has had to endure over the past few days. I’ve ridden in elevators with entirely too many sick children. I’ve met some very nice folks in the ICU waiting room, shared our stories and family member’s conditions, and seen their heartbreak as they made their final goodbyes. I’ve been so very sad for them — and so very relieved I wasn’t in their shoes. Daddy’s condition is, of course, quite serious, but he has apparently escaped permanent damage. It looks like we will get to take our loved one home. All of him.
I’ve watched people handle it all so differently as well. The angry types — who demand entry everywhere and are furious when doctors cannot answer the unanswerable. The dramatic types – who seem to thrive just a bit too much on an unfolding crisis. The manager types – who talk loudly, take detailed notes while demanding the correct the correct spelling of every name, and attempt to conduct the emergency to their own satisfaction. The wailers – whom you really should limit visiting the sick person, lest he think he’s dying. The jokers – who are so uncomfortable with grief they use inappropriate humor in an attempt to deflect it. And the doers – who immediately begin making contact lists, researching, making plans, signing paperwork, etc., with the express purpose of delaying the inevitable emotional crash sure to follow by just keeping busy.
That’s me. I’m a doer. An emotional autopilot. I know I’m not the only one, as I’ve met others like me. I’ve been acting as the family spokesperson – complete with a medical update email, investigating hotels, discussing rehab options. But I’m starting to get the idea that I have a particularly bad case of keeping busy. Over the past few days, I’ve noticed several people looking at me strangely. I’m getting the idea that they are wondering what is wrong with me, why I’m not crying, when I’m going to fall apart. I confess that I am wondering myself.
Because, I really could use a good cry. The problem is that it is all bottled up in uncertainty. I keep telling everyone who expresses concern that I will fall apart when it is called for or it’s over and that neither of those apply right now. From experience, I know the difference.
Five years ago, pancreatic cancer – a cruel and often hopeless disease – robbed me of my stepmother. A cheerful and devoted mother, grandmother, teacher, and friend, who dearly loved my daddy, was taken from us in just 5 months. It was without hope from the beginning, and I began silently grieving from the start. The last days of her life were pure hell – watching such a bright and beloved light fade from our world, leaving us all in devastation of her loss. I had never known it possible to cry as hard as I did. To this day, there are sights, sounds, and moments that take me right back to those dark hours. I’ve never been the same. There isn’t a single day that I don’t miss her presence and insight – especially now that I have children and a special needs child in particular. I just know she would have been an amazing support for me and a wonderful grandmother to him.
But this is different. We’ve got all kinds of hope here. But all kinds of suffering. Worries. Progress and setbacks. Fear of the unknown. Steadfast determination to remain positive. Nagging doubts. Relief. Anxiety. It isn’t grief. But it’s still a total and overwhelming assault upon one’s emotions. And deepest of all those emotions is the helplessness of watching someone I love suffer. It’s like the whole world is in limbo. (Oh, wait. Maybe this sounds like dealing with an autism diagnosis for your child after all…)
I feel just like a lost little kid in a big crowd, hoping my daddy will come find me and take me home.
Only I’m a mother now. I have small children who need my stability – even when I’m not feeling it myself. My little girl is very aware of how much I’ve been gone and keeps drawing pictures “for you Mama”. And Callum seems out of sorts as well – a little grumpy and way more snuggly. (Of course, I have been going home as much as I can and switching off with my step-sister and a couple of others. I swear I’m not abandoning my children.) My dad, were he not sedated at the moment, would fuss at me to go away and just pick him up from the hospital if he makes it. But you just can’t do that with the kind of dad who has rightly earned the name Daddy, now can you? He is, after all, Autism Grandparent of the Year.
So, yes, I’m okay. At least on the Official Press Release Statement. In a few weeks, when we get him out of the rehab hospital and back to being himself, I’ll reconsider a nervous breakdown. Oh, wait. I have to work for a living, be a wife, be a mother. Nix the breakdown. I’ll just have to settle for a visit with my doctor and the possible publication of some whiny blog posts. Darn those celebrities. Don’t you envy them their psychiatric options?
A quote about fathers and daughters I love:
“…I’ve made it my business to observe fathers and daughters. And I’ve seen some incredible, beautiful things. Like the little girl who’s not very cute – her teeth are funny, and her hair doesn’t grow right, and she’s got on thick glasses – but her father holds her hand and walks with her like she’s a tiny angel that no one can touch. He gives her the best gift a woman can get in this world: protection. And the little girl learns to trust the man in her life. And all the things that the world expects from women – to be beautiful, to soothe the troubled spirit, heal the sick, care for the dying, send the greeting card, bake the cake – all of those things become the way we pay the father back for protecting us…”
― Adriana Trigiani, Big Stone Gap
Update: The day following this posting, my father suffered a second, more devastating stroke. He passed away peacefully.