Time again to slip a steely needle through a vein. Monday it was Rudy’s. This time, Calvin’s. It’s never easy. They’ll poke and prod, fish around until they find it. He’ll cry and squirm. If we’re lucky they'll stick him only once and the blood will flow like a spring river does. I’ll see results within a week, perhaps explaining why he’s been so insanely crazy, so manic, so irritable, why he’s been sleeping so poorly and waking up at four in the morning and not going back to sleep, why he’s biting and pulling hair and dragging his teeth across my face again giving me welts. For a while there, he was doing so well, but for the seizures.
I traipse around the yard behind him, his tether in my grip. He’s walking so well—for him—that I want to let go. Even so, his erratic balance reminds me of the piles of pills he’s eaten in his short life, a long list of bitter, never-ending, mind-numbing, debilitating drugs racking his little body and drowning his brain.
I wonder what it would be like to have a boy who had no seizures, who took no drugs, who felt good inside his body and inside his head. What kind of person would I be if seizures didn't loom around every corner like a noxious cloud, if the pressure were lifted, if the air were clear and light? What would it feel like if I had a kid who didn’t flail and grind his teeth, who could sit still and feed himself, who could run and play and fall without hurting himself, who could eat what he wanted to and ask for it, who could walk down the street with me without balking and twisting, who didn’t writhe and cough and scream every time that I change his diaper. I wouldn’t even mind a kid who couldn’t talk and whose diaper I had to change if things were just a little easier.
I wonder what it would be like to not have to worry constantly, my mind getting snarled in knots. What would it feel like to be free, to be able to let go of my son—literally? How would it feel to fall asleep without the hissing reminder of the baby monitor, to sleep uninterrupted till dawn for two or more nights in a row, to sleep in past six, to not feel weary so much of the time, to not have to shield my face from a thrashing kid, to float around the house with my back to my boy as he plays quietly in the room next door, outside in the yard, at a friends house?
What kind of person would I be if everything were just a little bit easier?
I traipse around the yard behind him, his tether in my grip. He’s walking so well—for him—that I want to let go. Even so, his erratic balance reminds me of the piles of pills he’s eaten in his short life, a long list of bitter, never-ending, mind-numbing, debilitating drugs racking his little body and drowning his brain.
I wonder what it would be like to have a boy who had no seizures, who took no drugs, who felt good inside his body and inside his head. What kind of person would I be if seizures didn't loom around every corner like a noxious cloud, if the pressure were lifted, if the air were clear and light? What would it feel like if I had a kid who didn’t flail and grind his teeth, who could sit still and feed himself, who could run and play and fall without hurting himself, who could eat what he wanted to and ask for it, who could walk down the street with me without balking and twisting, who didn’t writhe and cough and scream every time that I change his diaper. I wouldn’t even mind a kid who couldn’t talk and whose diaper I had to change if things were just a little easier.
I wonder what it would be like to not have to worry constantly, my mind getting snarled in knots. What would it feel like to be free, to be able to let go of my son—literally? How would it feel to fall asleep without the hissing reminder of the baby monitor, to sleep uninterrupted till dawn for two or more nights in a row, to sleep in past six, to not feel weary so much of the time, to not have to shield my face from a thrashing kid, to float around the house with my back to my boy as he plays quietly in the room next door, outside in the yard, at a friends house?
What kind of person would I be if everything were just a little bit easier?
Damn good questions! No answers! I feel a lot of bitterness when posing such questions myself, I would like to blame someone but who?
ReplyDeletemateo, always good to hear from you but sorry for the reasons why.
DeleteYou wouldn't be who you are, nor would Calvin be who he is. I used to have a blog called TiredMummy because I was beyond tired, all the time. And then life changed.
ReplyDeleteI ask myself similar questions, Christy, even though our circumstances are quite different. I don't want to have to ask who I would be if things were easier but I do; I don't want to become bitter but when I hear myself snap, I wonder if I already am; I don't want to look back on my life and wish I had made other choices. These thoughts are fleeting but they do creep into my head. Respite helps a little. Sometimes just the dawn of a new day helps significantly. You've had a rough week, be gentle with yourself. Wishing you easier days. Hugs, Trish
ReplyDeletedear trish, your words are so gentle and loving. thank you. xo
DeleteAlso sending you good thoughts, prayers and strength. I wish things were easier for you too, and that Calvin did not have to suffer so. I always want to let you know, though, that your writing is a gift that you share, and that gift is rare and beautiful indeed.
ReplyDeleteBlessings and warm wishes for easier days ahead.
Diane
thank you all.
ReplyDeleteYour last question -- amen... I have been in the hospital with hailey for 4 days now. She had 80 grand mals in 4 days and it got to where we could no longer home manage it. As Mateo says above, there are no answers. I wept in front of the neuro team this morning, unable to comprehend their suggestion to put her back on topomax when at 250mg/full strength two years ago we had a hospital visit and a year ago on topomax at 150mg we were here as well. Now when we've weaned her off, that seems to be the answer? I wish things were easier, too. Thank you for writing about your frustrations. It eases my mind, and validates my own feelings. Sending you strength today and hope you're getting rest. xo
ReplyDeletedear amy, is cannabis oil an option for hailey? we did return to a drug once, keppra, but about six years apart. a friend had told me that keppra had not worked for her daughter the first time but trying it again years later it did. i do not know if that is the case with topomax. it would seem wise to try a different drug if there are any other options. i am sorry you and hailey are having such a hard time of it. my heart goes out to you. i wish there was something more that i could do. xoxo
DeleteThank you for your fast reply - the last two weeks have been a bit hellish, and after my tears in front of the neuro team I thought - I'm losing it today... and instinctively I went to your site today. Having never met, never talked, I know you understand, and that is comforting. If marijuana isn't legal in TX is cannabis oil then? Is it the same thing? we are so reluctant to go back on topomax, they talked earlier about trileptal but because it's for focal and she has generalized they didn't feel she would benefit. we are willing to try a new drug - such a rollercoaster of meds...
ReplyDeletedear amy, since you are in texas i would highly recommend you consider and contact someone at a california company called synergie. they have high CBD oils that are so low in THC that they are supposedly considered hemp, which is legal. high CBD oils don't help everyone but seem to help a lot of children who don't respond to pharmaceuticals. check out these two links: http://www.projectcbd.org/faq/ and http://synergycbd.com/tincture/
DeleteThank you so much, Christy. I will definitely look into these. Did you try Calvin on hemp first?
ReplyDeleteno, calvin is on a homemade thca cannabis oil. and to be clear, you do not want to use hemp oil. use cannabis oil, which you can get from synergy at the link above. call them with your questions. i might go this route, too.
DeleteI see. I will definitely call them as the legality of it all may be tricky for us as we have another adult in the picture, her biological mother, who is fairly and sadly uninvolved. I can't put my concerns about this on a blog but I'm sure you can understand them. Synergy would probably be able to clear them or confirm them for me. Do you feel your homemade is not giving you results? I read about their ACDC tincture - is that what you're interested in? I am floored that CBD is not available for children in every state. I'm convinced that she could be on that instead of the 2mg clonopin, and whether it controls her seizures any better, she would at least be receiving the sedative benefits without the ridiculous side effects and dependency.
ReplyDeleteyes, it is the ACDC tincture i am considering. i think that the thca oil i made is helping some, but not as much as i had hoped because i want to get calvin off of the clobazam at the very least. if bio mom is uninvolved, perhaps try synergy's acdc tincture just to see if it works. thca tincuture works well for many kids. i think it will be a good foundation while we add cbd oil and reduce clobazam. at least i'll cross my fingers!
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