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No flames, snarky posts, or meanness here, please. I feel incredibly down about this, and very vulnerable, and I'm trying to reach out for support. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
I have twin 5 y.o. sons with a genetic disorder called Tuberous Sclerosis Complex. They have a very severe case-- they're cognitively delayed (12-18 month scatter of skills), non-verbal, somewhat physically delayed, and they have a lot of repetitive self-stim autistic behaviors as well as semi-controlled seizures. I also have a developmentally normal, healthy 13 month old.<br><br>
Our twins were a surprise...we were on a trip around the world when we found out I was pregnant (even though I had an IUD). We had our young lives ahead of us, but we had been thinking seriously about marriage, and we thought we could handle the surprise of bringing a child into our lives. A week later we found out I was carrying identical twins. We got married, prepared for the craziness of twin parenthood, and put our dreams on hold for a while. Then, when I was six months pregnant, they found a heart abnormality on one of the babies. By the time I was seven months pregnant, doctors were talking to us about Tuberous Sclerosis. Everyone said it was a spectrum disorder, and that kids with TS can be fine. We had a lovely, natural birth (7 lbs and 8 lbs, 40 weeks), and we went home hopeful.<br><br>
Our James was the first to have seizures, when he was one month old. The brain scan showed tubers everywhere, and the neurologist told us that meant he would be "highly cognitively delayed and autistic." A short while later, the same results came back for Ian. The first year was hell. We were in and out of the Children's Hospital every couple of weeks for one or the other...always trying to control their horrible, horrible seizures. Medicines, side effects, steroid shots, swelling, losing hair, therapists, therapy, losing the ability to sweat, pain, pain, pain...<br><br>
Fast forward five years...things have stabilized quite a bit. James has had two brain surgeries that have helped, and we are always tweaking their meds to control seizures. Last month Ian had a 40-minute febrile seizure that landed him in the hospital for a week, with two days on life support. They're in a special ed kindergarten in the mornings, and I'm a stay-at-home Mom. I schedule all of their medical appointments (lots of specialists, as tubers grow in the kidneys, brain, heart, eyes and skin). I correct their never-ending stim behaviors...finger tapping, spinning, growling, page turning, etc. I feed them their meals, read them stories, and keep them safe. They're not completely closed off, not at all...they smile at me, give me hugs, cuddle into my lap, and hold my hand. It's not all bad, I guess.<br><br>
I also have Noah--he's 13 months now and just a darling. I didn't realize what parenting could be until we had him. I never realized it could be such joy, such fun. Every day he learns something new and every day I find being with him delightful.<br><br>
Before I had Noah, and I truly saw what parenting a typical child was like, I didn't struggle this much. I always tried to feel grateful for what we did have...I'd be at the hospital, and look at the kids and families that had conditions worse than ours, and be thankful that our special needs boys could smile at us, could finger feed themselves, etc. Feeling grateful used to be enough. Now it's not.<br><br>
My mother was a special ed teacher, so I grew up being around special needs kids. I was never one to make fun, but I didn't enjoy being with them, either. I'm impatient, and easily annoyed. I'm NOT one of those people that you say "was meant to be a mother to a child with special needs."<br><br>
I'm struggling recently. A lot. I was writing in my journal for Noah, and I was writing about how much I *enjoy* parenting him. Then it hit me--I don't enjoy parenting Ian and James. It just feels like work.<br><br>
I feel awful and guilty about the way I feel. I love my two boys, but I don't WANT them. I want them to have a mother, but I don't necessarily want it to be me. I parent them out of obligation, and guilt, and fear that someone else wouldn't do as good of a job, or that someone else would hurt them. I've often thought that, if I found someone I knew would be the kind of mother they deserve, I'd give them up.<br><br>
These are horrible, horrible things to feel. How can I not want my own children? How can I be this worn down by them, this annoyed? It's like a life sentence, being their parents.<br><br>
My therapist says one of the reasons I'm so weighed down by these feelings is because I judge myself for having them. She says it's normal to feel this way. Okay, fine, it's normal and I shouldn't judge myself. But how is acknowledging that going to help anything? Even if I let myself off the hook, it's still a life sentence.<br><br>
Does anyone else feel this way? Is there anyone that would be willing to talk about how they feel? Has anyone felt this way and found a path through it, or a different way to look at it, or something that brought you up from this dark place? Our lives have become so chained to their disability, their needs....we've given up our life path (getting our PhDs), we've had troubles in our marriage (on the mend with therapy), we never get out, and we're both constantly run down. We look at our lives, and at our twins, and think WE DON'T WANT THIS!<br><br>
Please be gentle. I've been on MDC for years, but this is my first time reaching out in this forum. I think I've been afraid to confront this for a long time.
I have twin 5 y.o. sons with a genetic disorder called Tuberous Sclerosis Complex. They have a very severe case-- they're cognitively delayed (12-18 month scatter of skills), non-verbal, somewhat physically delayed, and they have a lot of repetitive self-stim autistic behaviors as well as semi-controlled seizures. I also have a developmentally normal, healthy 13 month old.<br><br>
Our twins were a surprise...we were on a trip around the world when we found out I was pregnant (even though I had an IUD). We had our young lives ahead of us, but we had been thinking seriously about marriage, and we thought we could handle the surprise of bringing a child into our lives. A week later we found out I was carrying identical twins. We got married, prepared for the craziness of twin parenthood, and put our dreams on hold for a while. Then, when I was six months pregnant, they found a heart abnormality on one of the babies. By the time I was seven months pregnant, doctors were talking to us about Tuberous Sclerosis. Everyone said it was a spectrum disorder, and that kids with TS can be fine. We had a lovely, natural birth (7 lbs and 8 lbs, 40 weeks), and we went home hopeful.<br><br>
Our James was the first to have seizures, when he was one month old. The brain scan showed tubers everywhere, and the neurologist told us that meant he would be "highly cognitively delayed and autistic." A short while later, the same results came back for Ian. The first year was hell. We were in and out of the Children's Hospital every couple of weeks for one or the other...always trying to control their horrible, horrible seizures. Medicines, side effects, steroid shots, swelling, losing hair, therapists, therapy, losing the ability to sweat, pain, pain, pain...<br><br>
Fast forward five years...things have stabilized quite a bit. James has had two brain surgeries that have helped, and we are always tweaking their meds to control seizures. Last month Ian had a 40-minute febrile seizure that landed him in the hospital for a week, with two days on life support. They're in a special ed kindergarten in the mornings, and I'm a stay-at-home Mom. I schedule all of their medical appointments (lots of specialists, as tubers grow in the kidneys, brain, heart, eyes and skin). I correct their never-ending stim behaviors...finger tapping, spinning, growling, page turning, etc. I feed them their meals, read them stories, and keep them safe. They're not completely closed off, not at all...they smile at me, give me hugs, cuddle into my lap, and hold my hand. It's not all bad, I guess.<br><br>
I also have Noah--he's 13 months now and just a darling. I didn't realize what parenting could be until we had him. I never realized it could be such joy, such fun. Every day he learns something new and every day I find being with him delightful.<br><br>
Before I had Noah, and I truly saw what parenting a typical child was like, I didn't struggle this much. I always tried to feel grateful for what we did have...I'd be at the hospital, and look at the kids and families that had conditions worse than ours, and be thankful that our special needs boys could smile at us, could finger feed themselves, etc. Feeling grateful used to be enough. Now it's not.<br><br>
My mother was a special ed teacher, so I grew up being around special needs kids. I was never one to make fun, but I didn't enjoy being with them, either. I'm impatient, and easily annoyed. I'm NOT one of those people that you say "was meant to be a mother to a child with special needs."<br><br>
I'm struggling recently. A lot. I was writing in my journal for Noah, and I was writing about how much I *enjoy* parenting him. Then it hit me--I don't enjoy parenting Ian and James. It just feels like work.<br><br>
I feel awful and guilty about the way I feel. I love my two boys, but I don't WANT them. I want them to have a mother, but I don't necessarily want it to be me. I parent them out of obligation, and guilt, and fear that someone else wouldn't do as good of a job, or that someone else would hurt them. I've often thought that, if I found someone I knew would be the kind of mother they deserve, I'd give them up.<br><br>
These are horrible, horrible things to feel. How can I not want my own children? How can I be this worn down by them, this annoyed? It's like a life sentence, being their parents.<br><br>
My therapist says one of the reasons I'm so weighed down by these feelings is because I judge myself for having them. She says it's normal to feel this way. Okay, fine, it's normal and I shouldn't judge myself. But how is acknowledging that going to help anything? Even if I let myself off the hook, it's still a life sentence.<br><br>
Does anyone else feel this way? Is there anyone that would be willing to talk about how they feel? Has anyone felt this way and found a path through it, or a different way to look at it, or something that brought you up from this dark place? Our lives have become so chained to their disability, their needs....we've given up our life path (getting our PhDs), we've had troubles in our marriage (on the mend with therapy), we never get out, and we're both constantly run down. We look at our lives, and at our twins, and think WE DON'T WANT THIS!<br><br>
Please be gentle. I've been on MDC for years, but this is my first time reaching out in this forum. I think I've been afraid to confront this for a long time.
