Eight years ago today, my beloved Monkey Boy was wearing a hospital johnny so tiny that it would have been adorable if not for the damn wires that connected his body to various vital monitors. The grim – faced doctors kind of put a damper on things, too.
That day, the day my son was diagnosed with an ischemic stroke for which doctors have yet to find a cause, was pure Hell. Scratch that – Hell would probably be more like Club Med compared to that day. I can’t possibly describe to those who haven’t been there how excrutiating it is to have that kind of bomb dropped on you – and worse, on your child. No, you can’t imagine it, and I assure you that you don’t want to try.
Fast forward eight years. My Monkey Boy continues to kick stroke’s ass. Things certainly are not perfect, and at times generally suck for him. At those times, I hurt right along with him. The rest and majority of the time? I may have worries and fears, but as long as Monkey is happy, so am I. The path we’re on isn’t the one I anticipated, but we’re making our way nonetheless. Above all, I can honestly say that I cannot imagine a better son.
In honor of my superhero and the many others we have met along our journey, I have started a long – term project. The first stage will be complete in about a year, and I’ll provide more information on that when the time comes. For now, I’m off to celebrate my little hero who has made my life more beautiful than I could have ever dreamed.
After an unusually relaxing summer, we are preparing for yet another year of not going back to school. That’s right, I will not put my son on the yellow bus and tearfully (or perhaps joyously) wave goodbye as he heads off to face yet another big childhood milestone. As I have mentioned in previous posts, Monkey’s school is our house and the world at large.
My husband and I are neither religious extremists nor crunchy folk who make toilet paper out of tree bark. Rather, we are close – to – average parents who want the best for our son. While public school may be a great fit for some families, it became apparent by the time Monkey was ready for kindergarten that our school system would not meet his needs. If you would like further elaboration, click here.
Monkey has done quite well with home schooling. Recent tests (administered by a professional at a testing center as an alternative and big “eff you” to the state’s standardized test) reveal that he is learning at a remarkable rate. He receives about ten hours of physical and occupational therapy per week, as opposed to the paltry 45 minutes that the school system offered. As for socialization, Monkey is very involved in various community activities and has made countless friends along the way. In short, I don’t think we’re screwing him up too much.
We have sent our annual letter of intent, giggled when the head of student services replied with a letter granting us permission to home school (something he is not authorized to do, as we need only to tell and not ask the school system in our state), decided the who, where, what, and how of our plan, arranged the therapies, scheduled the extracurricular activities, and set up childcare for when work or other obligations make it necessary for us to be away from home. Once we give Monkey the traditional schultüte and take the obligatory first day photo, we will be ready to begin our fourth official year of home schooling.
Whether your child is educated through public school, private school, or home schooling, I wish you all a great year with as few instances of banging your head on a wall in frustration as possible. Good luck.
Tonight is one of “those” nights.
Reality sets in, and I realize that the effects of my son’s stroke will never go away. He is a little boy who had a stroke. He will also be a teenager, adult, and little old man who had a stroke. Monkey’s stroke will always remain, no matter how much I love him and hate it.
As ridiculous as it may sound, I sometimes let myself forget that. I get so wrapped up in the therapies, doctor appointments, lesson plans, recreational activities, and everything else that is supposed to help Monkey that I start to think in the back of my brain that he will one day be cured. Then, without warning, the light snaps on again and I have nowhere to look but at the truth.
We will keep chugging along and doing our best. Monkey will get where he gets when he gets there, and that’s all we can expect.
A stiff drink would help on nights like these if I were a drinking woman, but I’m not. I’ll settle for sweet dreams and positive energy instead.
Excuses, excuses, blah blah blah. I’ve neglected this blog, and I will offer little explanation.
Monkey and I were in Queens for medical treatment a few weeks ago. As we were crossing the parking lot at the medical center, a driver who had to stop started beeping at us to hurry. Yes, you read that correctly – some A – hole actually beeped at my physically disabled little boy because he wasn’t able to walk fast enough. Said A – Hole could tell my child has a disability, but decided it would be acceptable to terrify and humiliate a little boy in an effort to get to his destination just a few seconds sooner. Now, I have learned since having Monkey to be a calm, patient person. It’s either that or be led away in a straight jacket when your kid has a stroke. The mother lion instinct, however, knows no bounds. Daggers practically shot out of my eyes, a few choice words spewed from my mouth, and it took all I had in me not to reach through A – Hole’s window to give him a few knuckles to the forehead. He rolled down his window in a feeble effort, I suppose, to save face. He glared back and barked, a bit of a stammer in his voice, something about not caring that my kid is sorta, kinda paralyzed, he shouldn’t be holding up drivers. You know, I should just keep my son locked in a basement without necessary medical treatment to avoid inconveniencing others, right?
By that time, I had safely moved Monkey the whole ten feet to the other side of the lot, and he settled himself on a bench. It was then that I said something really shouldn’t have said within his earshot, but for which I refuse to be sorry:
“If you ever so much as look at my son the wrong way, I will kill you. Do you hear me? I will hunt you down and kill you.”
If you have a child who is a more defenseless than most and who has been treated with abuse because of it, you understand. If you do not, please spare me the judgment.
A – Hole actually looked like he may have needed to change his pants when he rolled up his window and sped away. I have never said such a thing to another human being, but I will consider my mission complete if I at least scared the guy enough to treat people who may not be capable of moving fast enough for his liking with more respect.
Meanwhile, my darling boy, my flesh, blood, heart, and soul, had tears running down his face. He asked me what he was supposed to do when A – Hole beeped at him, as he was doing the best he could. It was all I could do to dry his tears and promise to always protect him from A – holes who mistreat him as I tried to choke back a few tears of my own.
Does that man have any children of his own? Does he have a loved one with a disability? Does he have any idea what it’s like to watch his baby struggle to do things that others take for granted? Has he ever had to watch in horror as his defenseless loved one was abused by an uncaring stranger? I know the answer is a resounding no, or else the incident wouldn’t have occurred in the first place. I’d like to wish the guy a mile – long walk in Monkey’s shoes, but I can’t. I wouldn’t wish that on anyone. Although it will be a very long time before I forgive him, I simply cannot wish for him to go through the hell that Monkey and I have experienced over the course of the past seven years.
There’s nothing we can do to control the hand we’ve been dealt, so we move on. Arrivederci, all.
A real conversation I had with a really unhelpful customer service representative from the really horrible Idiot Insurance Company:
Mom: Your first letter states that Monkey was approved for 17 more PT visits, but the second one states that he is approved for only 8. May I ask why?
Idiot Insurance representative: The additional nine visits were the ones that he used when he was approved last month. In other words, he has 17 total.
Mom: No, he doesn’t. That makes no sense. If those were the visits that were approved and used last month, why are they included in this month’s statement?
IIR: Blah blah yadda yadda blah blah.
Mom: I’m also concerned that his diagnosis is listed as gait disturbance. As I stated previously, his diagnoses are stroke, CP, and SPD. Gait disturbance is just one of many symptoms of his diagnoses.
IIR: Mrs. Monkey, we are indeed aware that your son’s diagnoses include stroke, CP, and SPD. We are simply going by the physical therapist’s notes.
Mom: I’m looking right at the physical therapist’s notes. She has his diagnoses listed as stroke, CP, and SPD.
IIR: We still list it as gait disturbance because blah blah blah yadda yadda blah blah blah.
Mom: So are you telling me I will have to go through this process every 8 visits, and my medically fragile child will be left to deteriorate for weeks at a time until your company approves him for the services he needs?
IIR: Blah blah yadda yadda we always approve medically necessary services in a timely manner….
Mom: That’s debatable.
We have won a very small battle, but the war is still ahead of us.
Blah blah blah, yadda yadda yadda.
As long as I live, I will never stop fighting for and alongside you.
There is an overwhelmingly tall stack of papers sitting on my kitchen table.
Monkey’s medical history. A transcript of the seven – year shit storm.
I picked up the unedited version from the pediatrician’s office, per the recommendation of the attorney who is representing me in Mom v. Fancy Schmancy Insurance. I planned to simply tuck it away in my file without giving it a second glance. After all, I know all too well what’s in it.
Nonetheless, I made the terrible mistake of sitting down to read every single word.
For the first time in ages, I sobbed until I ran out of tears.
C’est la vie. Time to move on.