Around this time last month, I was all sorts of cheeky. My son was hospitalized for mental health issues and I couldn't stop making jokes, looking at the lighter side, and distracting myself from what was really going on.
Now, a month later, it's time to go back. After spending the month of February in the hospital, things still aren't right. He's going back today, and today I feel numb about it. I'm not sad, not angry, not anything. It is what it is. I hope this time around I don't try to mask how I feel. Numb is better than in hiding, I guess. So I'm making progress.
To be quite honest, I feel like the whole hospitalization last month was a failure because I didn't fully participate in the process. I spent so much time trying to figure out what kind of face cream the psychiatrist was using instead of actually listening to her, that maybe I missed some things. Or maybe I didn't press upon her what our needs were. Maybe that's why he has to go back now.
Only, that's not entirely true. I did tell them what was going on in our house, and I think they refused to listen to me. I hate hospitals and doctors because of that. Are there any attending docs that actually listen to their patients? Any?
The family physicians and pediatricians have to listen. Otherwise word on the street is "Dr. So-and-so totally didn't listen to me, and I'm switching doctors!" I can't switch the doc assigned to our case in the hospital. It's their call.
So we're going back. To a different hospital. At the suggestion of my son's psychologist at school. I was happy that he helped me to think straight. Getting a second opinion makes sense by me, my husband, his therapists. Something is still not right with my son, E-Niner, and we need to address it.
He no longer sleeps through the night. He no longer really sleeps. He's vigilant. Waiting for something to happen. For a sound to come. For someone to move. And then things do happen. Fish tails appear from nowhere. Ghosts start climbing our stairs. Characters from video games float in his room. And there are sounds he hears that no one else can. Either that, or I get slapped in the face, kicked in the back, bitten on my leg, screamed in my ear. So pick your poison -- hallucinations or aggression. All of it sucks. And none of it involves any shut-eye.
Last night, both my husband and I slept in his room. Both of us were there, and it was still not enough comfort for him. It's as though I need to crawl into his body and sleep for him. If I could do it, I would. I hate that physics limits us. Shit. I'm getting cheeky again.
I'm cheeky and I'm pissed as all get-out. Not sure why anger hasn't hit me yet in this way, but I'm pissed. I'm pissed that all this baloney takes away from ME, personally. Yeah, yeah. I did my grieving that my son has a mental illness; I got mad about it; I spent a long time in the Land of Not Fair. It took time, but I accept it. I'm willing to do whatever it takes to make his life as full as possible.
I sit here though, and realize, that "whatever it takes" means a TON of self-sacrifice. I'm resentful about that. Pissed-off. I think about where my life would be without ADHD, Anxiety and Psychotic Features. I see that person happier, feeling successful, feeling like an awesome mom. I could go to the grocery store on a whim. Hell, I could go to freaking FRANCE on a whim. But now? Now, I can't even make it out on a Saturday night around the corner without getting the phone call to "Come quick!"
I'm going to be absolutely honest here -- you are all very nice people and everything -- but I am actually really pissy that my entire social life for weeks on end is ONLINE. Yes, I've said it. Hopeful Parents and my own blog are where I go to party these days. Woo-Freaking-Hoo! If you could see me right now, I'd be dancing on the bar.
It's too bad virtual wine has a full bouquet of...NOTHING.
I want my life back. I want to be able to schedule a dentist appointment, as I did today, and not have to cancel it for the fifth time in a row (I kid you not) because of a crisis. I'd like to be able to schedule time to go to the gym, and not have it contingent upon whether I get a solid two hours sleep in a row at any given point during the night. I'd like to be able to carve out an hour each day to devote to writing. I'd like to be able to do my singing lessons again -- and my acting classes. I just want to be me, and I feel so squashed!
It's a choice, I know. I could disengage and do my own thing. But that would feel so much worse. I love my son more than dental appointments and sleep and the arts. I love him more than any thing and I maybe even love him more than myself. I must, otherwise how could I continue to allow my interests and passions to fall away? But I'm still pissed about it.
And maybe, not so numb anymore.
Sometimes a reminder helps.........ReplyDelete
A Caregiver's Bill of Rights (Author Unknown)
I have the right:
To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.
To seek help from others even though my relative may object. I recognize the limits of my own endurance and strength.
To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything I reasonably can for this person and I have the right to do some things just for myself.
To get angry, be depressed and express other difficult feelings occasionally.
To reject any attempt by my relative (either conscious or unconscious) to manipulate me through guilt, anger or depression.
To receive consideration, affection, forgiveness and acceptance for what I do from my beloved one for as long as I offer these qualities in return.
To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.
To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.
To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.
(Add your own statement of rights to this list. Read the list to yourself everyday)
I am so very sorry that your son is going through this terrible time and that you have to return to the hospital. I hope, this time, the doctors listen and really hear what you have to tell them and can help your son.ReplyDelete
Though our struggles are different, the net effects are the same. You voiced it so clearly, the anger, frustration and grief over the Herculean sacrifices some of us must make for our children. And yet, as you said, we wouldn't NOT do it because we love our children more than life itself.
I did laugh at your snarky line about physics limiting us; I so often feel that way and wish i could slip inside my son's skin to take his pain and struggles on for him, to comfort him from the inside out.
I have no magic wand or words, but I wish you peace for all your family, but especially your son and you.
hang in there, I hope the 2nd opinions are useful. You are important and taking care of yo uis tied up in being able to take care of him so don't forget aobut you.ReplyDelete
I'm so glad that you said it!ReplyDelete
In my opinion, E-Niner is not going back to the hospital because of your interest in the doctor's face cream - he's going back because the "experts" aren't getting to the bottom of this, and you are leaving no stone unturned to try to help him. That's a full-time job right now, and I hear you & your needs getting neglected in the process. I don't know what to say, except that you deserve to be heard, seen, felt, and you deserve the opportunity to express your feelings and passions. We aren't much, but we are here, we care, we are listening and praying for help for each of you, moment by moment, day by day.
I believe that the tide is going to turn, and that a way will open. What that way will be, I have no idea, but I have hope and faith that things are going to shift. They always do, one way or another.
God bless you, comfort you and keep you. You are His beloved, as is each person in your family.
For whatever it's worth, I understand your numbness, your anger, your loneliness and just plain sick of it all. I believe we all go through this, some more than others and some in different ways. I just keep telling myself that everything changes and nothing is permanent. That's why the living in the moment adage has to keep coming back and back. You are living a remarkable life with a remarkable son. It IS your full-time job right now but I have to believe it won't be forever. You WILL learn to take time for yourself and as you do more of that without feeling numb or flippant you will realize that your son is still there, thriving in your love and care. I'm sort of babbling now, reaching out to you with a virtual hug. I know it's kind of lame to have this support system online, but it's all heartfelt and true.ReplyDelete
Love and peace and blessings to you.
Your situation sounds exactly like ours. I don't know if people who have not been through the sleep thing can truly understand what it is like. We went through what you describe for 18 months!!! Each time i go to bed, I never know if I am going to get 15 minutes of sleep or 2+ hours. I have to take a sleeping pill to go to sleep because I am so anxious about when I will be called to wake up next.ReplyDelete
This may sound strange, but by any chance, was your child exposed to strep? If you are doing any blood work while at the hospital, can you check his strep titers? THe symptoms you are describing sound so similar to our situation. You can feel free to read our blog and contact me if you have any questions.
I feel for you and know exactly what you are going through. Good luck to you and your family.
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