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?”