I have not wanted to write here. I am only going to spout lots of depressing crap in this post, so if you don’t feel like reading it, please feel free to skip this one altogether. It reads too much like a diary and is too personal. I admit things I don’t want to admit. I’m this close to deleting the whole damn post. In fact I want you to skip it.
Sigh.
When my mom and I drove down to visit Jonah last Saturday it was difficult all around. Andy had taken Jonah the night before for an overnight visit, and Jonah didn’t fall asleep until 5am. I don’t know if it was the heat that kept Jonah up or what, but as a result Andy was exhausted. At first the only discernable effect on Jonah was a strangely voracious appetite, asking for one food after another, though later he napped against the window on his car ride.
He refuses to have all 3 of us in the car, which almost always means my mom has to stay back at the apartment while Andy and I drive him around.
This time we tried to force the issue, but Jonah wasn’t having it. My mom got in the back of the car with him and Jonah immediately attacked her, pulling her shirt and scratching up her shoulder. So as usual she went inside and watched Fox or QVC or whatever the hell on TV. But she’s sick of it, the whole thing, the making sandwiches for all of us ahead of time and driving an hour and a half every week to bring Jonah gummy bears, chips, special treats, then visiting him for 10 minutes and being left behind. She’s tired and she doesn’t want to do it anymore, as much as she loves her grandson. Then, to add to it, Andy and I have been arguing on the car rides recently and sometimes I come back crying, and that pisses her off too. She yelled at me on our ride back home, demanding why can’t two people get along for 3 hours once a week?
I have no answer. I don’t know why. It was never a problem before.
There is so much frustration in everything that has to do with Jonah now. God help me but sometimes I don’t want to drive down either. Back home I sit in Jonah’s room sometimes — I’ve got it decorated like a guest room now:
I look at it all and then close my eyes. I picture the room as we’d prepared it before he was born: the pale green checkered curtains and light wood crib with matching green checkered bedding. The toy box, bookshelf full of baby books, closet & dresser full of tiny clothes. The before. And the wee baby days when Jonah was sweet, strong, holding his head up early, walking early. We all thought he was so very healthy, so uniquely intelligent. I’d nurse him on my lap and balance my own dinner on the edge of the boppy pillow, gazing down at my beautiful son, our eyes meeting with love.
“And you know where you were then…” I sigh too because sweet, innocent, dingbat Edith (Jean Stapleton) of my favorite show has died, “stifled” all too soon, even if she was 90.
Now we don’t know where we are, or what to do to solve anything, and more questions, trouble, worries appear on the horizon of each day. I have no health insurance for 90 days, and I can’t afford COBRA. I need to find out what insurance paid for which doctor and what medicine so I can ensure Jonah is still covered for everything he needs through Medicaid disability. Andy wants to get a divorce now (we are currently legally separated). He has been saying for some time that he no longer wants me to help him monetarily — not with health insurance, not with car insurance, not with anything — going so far as to tell me (in a moment of hyperbole) that he’d never talk to me again if I paid for any of his expenses. Maybe the divorce will give him closure; maybe it will make him less angry at me so much of the time. I don’t know. But even a no-contest divorce through our mediator is more expensive than I guessed.
And I keep thinking I should make an appointment with Jonah’s psych doctor, talk to her about weaning him off the cocktail of meds which are supposed to mitigate the anxiety and aggression, then put him back on them one at a time to see what works and what doesn’t…but I’m not sure it’s the right thing to do and I’m not sure who can tell me or how damaging it might be for Boo to put him through that. Plus I want his eye to heal first. I don’t know what to do.
Andy took him to the eye doctor in Rhinebeck today. When he called me tonight to give me the daily “Jonah report,” he told me the eye doc checked Boo’s vision in the left eye…and that now Jonah can’t see anything out of that eye at all. My heart stopped. You mean all this has been for nothing? The operation…the hell week afterward…the anguish and the aggressions and the all of the everything?
Evidently Jonah can’t see out of his left eye because it has hemorrhaged somewhat and there is still blood in it, blocking the retina, so the doc was not over-alarmed. But Andy says it will take a very long time for the blood to clear. Does it mean Jonah will have to wear the eye shield for another week? Another month? Does it mean that when the blood clears, he will be able to see again? We don’t know.
We don’t know what is going to happen and we don’t know how to visit with Jonah and we don’t fucking know. Andy took Jonah for a while today and Jonah attacked him twice when they were having “quiet time” lying on Andy’s bed. Other than that he was good, Andy told me. Other than being attacked twice…
On Sunday M and I went to church, a non-denominational Protestant Christian church his co-worker goes to in Schodack. It was the first time in decades I’d been to anything but a Catholic Church. I suppose it should be easy for one raised Catholic to go from the seeped-in-ritual Mass to the virtually ritual-less service of this kind of place — at least easier than if it were reversed, and one had to try to unravel all the movements and prayers of the Catholics. But the pastor spoke about the story of Abraham and how God told him to sacrifice his son. I started to cry, of course, silently, drawing an immediate parallel to my own life, and I couldn’t stop the tears through the whole service. I felt like an idiot, though M assured me afterward that it was a perfectly fine place to have tears rolling down your face. I suppose I should be glad of that. (Of course, in the Bible passage, as soon as Abraham agreed to sacrifice his son, God changed His mind and let the child live).
My little Boo, the sacrificial lamb.
We gave him up all right, but for what? He’s been at his residential school for nearly two years, and though he has learned a lot, his aggressions haven’t gone away at all. If the medicine is mitigating the aggressions, I shudder to think of what he would be like without them. He is now older, stronger. Are they simply managing him? No. He is learning and he does have good days of joy and peace. But still he moves lightning-quick to strike and slap and pull hair, to hit, to kick, to hurt whomever is in range, even when he has just been given something he wants – even when he seems perfectly happy just microseconds prior to the aggression. It’s as if Andy and I have permanent PTSD. Or just TSD, because there isn’t any Post. It’s ongoing. I am ashamed to say it but I am grateful I do not have to take care of my son; I am grateful he is not in my home.
And now I will admit the most shameful thing of all: sometimes, on the worst days, I become ignorantly envious of parents whose children sicken and die, and for this simple reason: because there is an end to it.
No, of course I don’t want Jonah to die. And I am not really envious of parents whose children die. I know it would be horrible, beyond my imagination or comprehension. It’s the end to it that I want.
I just want an end to it.
Please! Please! Please! Stop beating yourself up for having emotions that any human being in your place would have. And give yourself credit for being more honest than most, for admitting that in your ongoing state of Traumatic Stress Disorder you are grateful that you do not have the daily care of your son, who grows bigger and stronger each year and whose kicking, biting, hitting, scratching and hair pulling becomes more intense as time passes. Please do not shame yourself for wishing that there was an end to the constant, nerve-shredding, exhausting trauma that results from being the parent of a child so violently aggressive that you had no choice but to place him in a residential school. Please be kinder to yourself, Amy. I cannot believe that anyone else judges you as harshly as you judge yourself. No one who has not walked a mile in your moccasins has a right to even think about judging you. All that those of us who read your blog can do is open our hearts and pour unconditional love and support from our hearts to yours. My heart is open and pouring.
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I can honestly relate to you wanting an end and an answer of what to do to help your child.
My son’s symptoms are not as severe but he does have his challenges and none of the doctors can guarantee his brain tumor will never grow back. It will follow us the rest of his life. No end until the very end. Its torture.
I go to a non denominational church and yes, you can cry all you need to that iis fine, I’m in tears during prayer and worship half the time. His presence does that, often when we are at our weakest and desperately need Him.
God’s strength is made perfect in our weakness. And though I have no idea what the future holds for my son, God knows. He loves Jonah so much and He will provide for him. Now you may not know exactly how that will happen, but you have to trust that God will provide. I know much easier said than done, I didn’t like hearing it either. Just keep praying and trusting God, even when you don’t feel like it.
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Every single syllable you wrote in that post is reasonable, honest, human, fair and loving. Anyone looking at the pile-up of stress, uncertainty, and heartache you are moving through at this moment can only marvel at your clear-headed ability to both act and reflect.
You are dealing with an overload of major life-altering events — long-term and short term — any one of which could trigger depression or panic. TSD indeed. No one with any sense at all could find fault with a word you wrote.
No, you do not want Jonah to die, but if I might presume to say this, you are still mourning the death of the child he was for a while. On top of that, you are facing the death of your marriage. No matter how much you considered it ended, actual divorce is a funeral. Death images are to be expected.
Those of us following your account of so much uncertainty can only send you empathy and hope, but rest assured that we are doing that.
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It’s like you are strapped on a rotten ride at the fair, and the evil carny won’t stop it no matter how much you puke. I think you are operating on the high end of normal.
I would likely “elope;” hit the door running and go until I ran off the edge of the earth, which I think is somewhere in California.
Additionally, if there is a god, he must be nuts.
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Amy, I am glad you didn’t delete this post. I’m so glad you told the truth of this part of your life…essentially the major part of your life because it seeps into evey nook and cranny. It sounds so trite, but I wish I could take over for a while, and let you breathe, let you think, let you rest your mind and your heart for awhile.
I believe that everything happens for a reason. But for the life of me, there are some things I just can’t figure out. You and Jonah being one. Michael and me being another. Life is hard. That’s why we met. But it is a wonderful feeling that we did meet…so our difficuties might have been the reason why it happened.
I pray, which in my life means I fervently hope, that you continue to be truthful in your writing. It has to be a catharsis of some sort.
I love you and think of you often. I am so sorry it is hard.
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Amy,
We love you. Not just on the good (less horrific?) days, but on all of them. Perhaps some day we can actually meet (with both if us being Ingalls-aholics, it’s possible), but please know that a very sincere virtual hug is out in the universe for you now. And for Jonah Boo – I’m just his type: long hair with rope-like curls begging to be pulled and exceedingly tantalizing large glasses daring to be ripped off. We are here for you, not just on Guster & Rail Fanning Days, but on the bad days, too. You ARE a pioneer, braving a new front fraught with hostility – only instead of bears and rattlesnakes it’s your baby that’s poised to strike 24/7. That would take its toll on anyone. I took care of my Mother during the last 6 years and 6 days of her life, and as the cancer ravaged her brain her beautiful mind disappeared. I could not do ANYTHING right. One day she demanded I go home and get her ‘El Capitan’ hat. What the hell? So I got a baseball cap my Dad gave her and luckily she was placated. It wasn’t always so easy. I was bitten, screamed at, argued with, and somehow always covered in feces. I remember standing in my hallway waiting to help her out of the bathroom & sobbing because I knew she was dying and I didn’t want to be angry with her during the time we had left. After beating myself up for feeling relieved when she was gone, I now recognize that wanting……..peace? Doesn’t make me a bad person. Letting people who are trained to care for Jonah do so? Doesn’t make you a bad person. Be nicer to you. Follow the advice you would give someone else in your shoes. And new Churches? Are universally hideous. Especially to those of us who grew up in ‘real’ Churches. Okay, before anyone gets mad at me for being flippant – I know that the building isn’t the point. They’re just so……stark. There is something comforting about Mass that is just missing in ‘Contemporary’ services. Take comfort when and where you can – any port in a storm, yes?
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Amy, you have no idea how much this blog entry resonates with me. So much of what you’ve said resembles my innermost thoughts. As painful as it has been for you to write this, I’m glad you did. Thank you. Big hugs your way.
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