Dear Single Dad: (part 2 of 2)
Here is a tough email that gets to the heart of our community is some ways. There is a simple question at the end. “Simple” as in explaining string theory to a three year old.
I have been reading your blog for a few months now, and I thought it was about time I quit lurking and said “hello.” My son was born last November with massive hydrocephalus and has since been diagnosed with epilepsy, CVI [vision disorder], hearing loss, and all sorts of other ailments.
He is equally the best the best thing that has ever happened to me and a source of constant pain and sadness. (If that makes sense.) I love him to pieces, but it rips my heart out to see him suffer multiple seizures every single day, and it pains me that he does not respond to me in any meaningful way.
Although he exhibits some degree of awareness of his surroundings, I have no idea if he recognizes me or even knows that I’m around. He does move his legs when I tickle the bottoms of his feet and seems to snuggle into my shoulder when I hold him, but he does not turn his head to my voice, focus on what I say to him, or smile (unless he is seizing).
Since you have been doing this for much longer than I have, I’m hoping you can share some advice and encouragement. What gets you through each day?
As you know, getting through each day is something we all deal with. Sue has a child, who, like Pearlsky and David, has no communication, apparently not even with meaningful smiles or head turns. I get it. She also shows great love and devotion towards her son, but does that help or hurt?
I want to add some information here … Sue is highly educated and accomplished, young, and has a husband who is very hands on and supportive.
Getting through the day is very difficult at times. It hurts me everyday that I don’t hear “daddy’s home,” I don’t get a “good night” or “I love you.” Little things that make life easier, more meaningful. And completely taken for granted by others.
But how do you go on? I mention that Sue is highly educated for a reason. So is Pearlsky’s mom. I believe this puts a different twist on things at times. Is there a difference in how we get through the day if we are highly educated? How about if we are highly religious? Do we accept our kids easier?
“Accept” our kids. What does that mean? I believe I accepted Pearlsky early on. Maybe that means I stopped thinking that she will get better, that she will make it to first grade. Does that make getting through the day easier? Easier than what? If I kept thinking that she would get better, then every day I would expect progress, no? Kelly did not expect Chris to reach the age he is. Does that mean acceptance or giving up? Or is it reality? M goes through everyday fearing R having another stroke. Everyday she sees how R is doing, all the more painful because R has a twin, a twin who never had a stroke. How does M get through the day? I simply do not think I could make it in that situation.
Does religion do it? Not for me. Until the holy one, blessed be He, decides to tell me why He did this to Pearlsky, well, He is not a source of comfort. M is a strongly pious woman, that does not stop the tears, the desire to run. And not stop running. A desire I know. Let’s face it, how do you pray to, and ask for strength from, the deity who, if able to deliver those things to you, is the same deity who messed up your kid in the first place? Do you ask the puke who just torched your house to hand you the hose? The executioner does not do CPR.
Does education do it? An educated parent will typically do a lot of research, and no, that is not limited to educated parents, I know. I believe that such a parent is less willing to “just accept” their child as severely disabled. I am NOT putting out a value judgement, just an observation. Both Pearlsky’s mom and I have advanced degrees (big f–king deal, we also have two really messed up kids) (I’d give a shot glass of gray matter for a normal kid). I know a goddess with a B.A. who did more research than my ex and I put together. But I digress.
Sue (from the email above) offers these thoughts:
- No amount of time, money, or education can “change” Bobby’s brain.
- Planning is futile. (I read your recent post on “planning,” and I understand all too well the desire to plan and the realization that you can’t plan for everything.) [ed. note: can you plan for anything?]
- Physicians are just people who went to university for a long time.
- I waiver between pragmatism and idealism. I feel torn between accepting the realities of Bobby’s condition and holding onto the hope that through rigorous therapies and hard work, he may be able to acquire skills that presently seem so far beyond his reach.
- I want to know everything I can about Bobby’s condition, but in the end, I realize that no medical journal article, text book, or blog post will tell me any more than I already know.
Another parent I know mainly stays in denial. She has done minimal research into her daughter’s condition (undiagnosed does not help), does not do much searching for clues, to a great extent follows the doctor’s orders without question, and continues to go to church regularly. She gets through the days fairly well, except those with her therapist, for reasons I do not know. Whether a coincidence or not I am not sure, but she did not continue her education after high school. Again, an observation, not a value judgement.
How do I get through the day? Do I have a choice? Yeah, that is a dumb response, in some respects. Yes, I have a choice. I can be the best I can be, or I can shoot my self in the head. Many mornings I need to decide which. Gotta get a different coin.
I have accepted that Pearlsky is Pearlsky and little will change. There are little glimmers of hope, there have to be, and for now it is the 70% success rate in getting her to stick her tongue out on demand. But she ain’t gonna be walking or talking.
I have the occasional oasis. I make sure I get an hour or two where I do not have to worry about Pearlsky, and more than that, I can do something for me. I hired a new nanny for Thursday evenings. That forces me to be out of the house and do something for me, dinner with a friend, a movie, last time was Barnes and Noble followed by the Cheesecake Factory, by myself, to enjoy the book. (Get that book.) (Read it, learn from it.) (Really) Make that special time with your spouse, or friend with benefits, or partner. Yes, Single Dad means sex. At least once a week, focus on that, make sure the kids are safe, close out the world, heck, and do it. Doesn’t matter if you don’t like your spouse; close your eyes and think of someone else. Or, lacking a goddess, take a bath with a rubber ducky. Do something physical, for you.
But the days themselves? The bad ones go by the four hour rule. How do I make it to lunchtime? What are the priorities and how do I make it. Then, how do I make it to dinnertime? Then, finally, how do we make it to bedtime? But most days are not bad ones, most follow the routine. Routine is good, it works.
- get up
- get Pearlsky to school
- go to work
- meet the school van at the house at 3
- back to work
- home for dinner
- get racked with guilt that I am watching TV with Pearlsky yet not interacting with her
- get her ready for bed
- decompress for an hour while doing laundry
- crawl into bed and decide if I am going to cry, scream, or just fall asleep
Don’t you wish sometimes that they made an anti-depressant equivalent of Diastat? A super-potent medication that could be taken on days that just seem too overwhelming? (Hopefully, with a different method of administration, of course!)
Why change the administration? Some days that may be the best thing to happen to me. (ok, not)
Seeing that no one has followed up on the comment that Kelly left in response to Ken’s comment (on this post) … I guess you are not over there checking on her and Chris! I am following because I know there will be a time where I need Pearlsky to not live with me, but I refuse to think about it. This is making me. It was different when David left my house, and then years later when he went to the residence. That was gradual, with its own nightmares, but different.
Ok, now YOUR opinions. YOUR answers to Sue. “What gets you through each day?”
I have no idea what got me through the early days with Sophie — the days when I knew absolutely nothing, she screamed most of the time that she wasn’t seizing and The Husband was working. I really have no idea how I got through them. I “get through” my life now, sixteen years later, with a pretty solid notion of impermanence — knowing that nothing lasts forever –even moods. I have two more children who have enriched my life beyond measure. I was graced with a sense of humor that sustains me. Just when I might think about killing myself, I am struck by absurdity and realize that everything passes. Buddhism helps and mindfulness meditation, every day. I have periods of what I call “creative denial,” when this life seems outrageously beautiful. I write; I see my friends; I have my blog and my blogging community. I don’t think of everything as having a reason — most things just are.
I do wish that I had more sex, though. Seriously. 🙂
Don’t you think that a person’s psychology/personality have the strongest influence here, in terms of coping skills? Well I do anyway.
What got me through the early days was that nobody knew exactly how bad things were going to get.
Even now, each doctor’s visit brings a new level of despair.
What gets me through the days is taking it one day at a time. When I start thinking about the future – that this child will likely always be dependent on me – I can get buried under all the years.
I am grateful that almost everything is something she can learn to compensate for. But I spend a lot of time wishing things were easier for her (and for myself by extension).
I am religious and I often question why is this child like this? I remind myself that we believe that it was pre-ordained that I would be given this child with this “pekel” (package). Everyone has their pekel, some are just “harder” then others. G-d never gives you more then you can handle right? I just wish G-d didn’t think I was so competent.
Last night she spent TWO HOURS CRYING AND SCREAMING because I wouldn’t read her a story (after she had already stayed up late doing other things). In reality I could see it was about hunger and exhaustion, but until I could step back and see that… well let’s just say I wanted to put her out the front door.
“Be where your feet are” – take it one day at a time and if you can’t handle the day, then one hour at a time or even one minute at a time.
Sarah turns 15 today. Fifteen. Years. Old. And I can’t believe I have been taking care of her daily for that long. And then I can imagine, cause I have been. Taking care of her.
It sounds overwhelming, but taken day by day, it’s doable.
What gets me through each day of these 15 years? There are 2 things. One is Sarah’s smile. Yes, she is a smiler. So, I know she is happy. For me, this is a big thing. Lots of people are not happy, she is not one of them. I feel that she likes her life. So, that’s the most important thing to me.
Secondly, is my own personality/spirituality. I am, by nature, an optimist. As in, things could always be worse. I was not this way as a child but I think that having Sarah has refined this trait in me. She has shaped my personality. And the spirituality part? Well, I subscribe strongly to the thought that things are exactly the way they are supposed to be and we are here to learn and grow. Sounds cliche, I know, but that is the lens through which I view our life. Cause there is so much more going on here than the life we are presently leading.
So there it is. Spirituality is my key.
Hi. (I’ve been reading on and off for a couple of years but never commented before.) First I know the post isn’t about this, but Sue’s son sounds like ours – he had a stroke before birth and was born with severe hydrocephalus (80/20 fluid/tissue in the brain instead of 20/80). The shunt worked well, and once the epilepsy was taken care of, his vision has really taken off and developed a lot, though it’s still impaired to a degree. They thought he was blind for a while, but it was “just” the seizures preventing the right connections from developing in the visual cortex. The bad news is that to take care of the epilepsy, which went from intermittent to intractable to catastrophic over his first year, a hemispherectomy was required. The good news is he’s doing much better. If Sue wants to be in touch please pass along my address.
But I wanted to respond about what gets you through the difficult parts. I’ve noticed a lot of parents “in the special needs community” (a phrase I hate) who credit their faith. Me, I don’t think there’s anything or anyone out there pulling the strings, beyond the blind dumb laws of the universe, and if that makes existence seem meaningless then you have to find a spin you can put on things that acknowledges how things *feel* like they have meaning, and lack of a reason doesn’t mean lack of meaning or lack of importance. My spin on all of that is longer than I can write about here! But what I can’t do is make up a story about how there’s a grand plan for everyone, and the cruel-seeming things that happen to some of us are actually another mysterious facet of how God’s love extends into the world in a very complicated inscrutable way, and it’s *so* unfathomable to puny human brains that there’s no point in even trying to understand it – just accept it. Yes it would be wonderful if someone invisible was looking out for us all, we just had to love Him enough and then everything would turn out ok in the end, be it during this life or afterwards… but who can believe something just because the consequences would be nice?? Not me. I can’t tell if I wish I *could* believe, even though I kind of envy the calmness of people who do. It’s not like wishing you liked olives so you could enjoy the olive quiche your aunt makes–if you liked olives you’d still be you, only you’d like olives and you could enjoy that now-tasty quiche. But if I accepted God’s love, just because I liked the consequences if it were all true – why, then all the rejiggering to my thinking that that implies would mean I wouldn’t be me anymore. (And maybe I wouldn’t mind at that point. Still can’t do it.)
Anyway that is obviously a huge topic and not fit for a delurking comment on a blog. I do feel very isolated among other parents of disabled children when they’re all sharing in their faith, and confident God has it under control for their family – if it’s under control for them because of their faith, it implies they’d believe my son will have a mark against him in God’s book, and his outcome will be worse, just because his dad hasn’t accepted God. And what can you do at a meeting or on a discussion forum when everyone’s doing the religious thing – there might be others who think like me, but no one is going to be a big enough jerk to make a comment. Some disability blogs end up with comment threads that are completely about God this and Jesus that, Bible passages and devotional inspirational messages, and if it’s offputting to a lapsed Christian, it must be all the worse for folks of another religion. In person, I wouldn’t even tell another parent who believes God has a plan for their child that I didn’t believe in him myself – some religious people feel automatically belittled by the mere existence of athiests, and I wouldn’t want to detract from something that they feel gives them comfort.
Taking the route of following the doctors’ advice and not thinking too hard about it is also not an option for me. I can’t accept *anything* without understanding it as thoroughly as I imagine I should be able to – which is mostly a curse rather than a blessing but another thing that I wouldn’t have any other way.
My son is here, and life with him isn’t how I imagined it before he was born, but since I love him so much I’m just going to get through it because what other choice is there. I have also liked to think “this too will pass” on occasion, but I’ll confess it’s hard to confront the thought that the difficulties might only pass when we do. Still, we recalibrate, willingly or not, and woven in among the difficulties are the rewards that only you recognise as rewards. I read a very perceptive account of “chronic sorrow” the other day (here: http://www.journeyofhearts.org/kirstimd/sorrow.htm) and it rings true to me. It’s not like being depressed all the time but there is a background sorrow, that’s part of the new you, and it can get reenergised from time to time by various reminders that prompt it. I never quite know how much to believe the incredible positive energy some parents manage to convey – lots of them whose blogs I’ve encountered don’t dwell on the demoralising aspects, but if you’re not sometimes demoralised by disability I don’t think you’re entirely human!
And I’ve written way more than I thought I was going to, but hi, thanks for the blog Single Dad, and let me say I’ve appreciated your writings about Pearlsky many times over the last couple of years.
“Well, I subscribe strongly to the thought that things are exactly the way they are supposed to be and we are here to learn and grow.” from Lesley. That’s pretty much where I am too. It dawned on me almost one day, like a ton of bricks, that my kid wasn’t an “accident” or some unfortunate event in my life (or hers) but that she was actually as she needed to be, and I was there with her. We move through this life together then, so be it. I’m game.
Sue, is your son on phenobarbital? My son took this anti-seizure medication for his first four months, and only after switching to a different one did he become more “with it” and start to smile and respond.
I was 19 when my son was born with only a high school education if that matters. When he was four days old the doctor in the NICU pulled me aside and told me that unless he improved significantly over the next few days, he would never talk, walk, and would eat through a tube for the rest of his life. He was right.
So I knew what was going on from the get-go, as much as somebody can know about the future of a severely disabled infant. I was lucky to get a name for what he had from day one, a great pediatrician to help me navigate the system, and a supportive family. I did my own research and took what the doctors said with a grain of salt unless there was a study to back it up.
I have always been a realist so “hope” and “my son” were not words I commonly uttered in the same sentence. It was hard to always live in the Baby World – the baby talk, the baby games (peek-a-boo, tickle-me), the baby toys.
SD, I empathize with you and all that you are going through and I know how quiet it can be in the evenings. And the first thought in the morning when you open your eyes and wonder, “Did my child aspirate during a seizure and die in the night?” The only thing that got me through the bad days was shrugging my shoulders and acknowledging that it was a bad day. Then go to sleep and hope for the best the next day.
The only thing that relieved me of the thoughts that you mention having on this blog was his death at age four. He had CP, CVI, microcephaly, seizure disorder and the most piercing blue eyes that could see right into your soul.
I know have another child with a deficiency. When the doctors finally figured out what it was, and that she would need a shot in the butt once a day to take care of it, I breathed a sigh of relief. Really? A shot in the butt is all? HA! I could do that in my sleep.
FYI, diastat is rectal valium, so you may be able to get an oral rx.
I’ve read both posts ( i follow you both ) so how did you meet?
Appreciate the little things. And most importantly, do everything in your power to not compare.
Your last few blogs have been so deep and so full of so many things that I can’t even give them their proper due. I can’t even make good dick jokes about them.
And after I typed out the fifth or sixth paragraph of drivel I stopped because it was shit…
Got nuthin’ worthwhile…