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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.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I don't really have anything to say but I didn't want to read & not post. I don't have a child with SN but my best friend's daughter is severely autistic & developmentally delayed- but she had her "typical" children first. She has a very hard life but she doesn't complain. I know at times she must feel like it though.<br><br>
I don't know whether it is safe to say that EVERY mom of a SN kid feels like you are feeling at some point... I would hazard a guess that there are many moms of typical kids that might feel that way at times. It is not a BAD thing to feel that way, or even in the extreme case, to give your child(ren) to a family who would be better equipped to care for them... what would be bad would be for you (general you, any mom who feels this way...) to allow your children to feel your unrest- to somehow know that Mommy is not happy with them...<br><br>
Does this make sense? I am trying to speak gently, & know that I am not feeling any judgment toward you at all, I am just trying to think of things you might've felt or might still be feeling, & help you to talk about them...<br><br>
Much love to you. Please keep posting here- the moms here are amazing!!
 

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i can not imagine how hard this must be for you,<br>
but wow ... you are one strong woman.<br>
respect.<br><br>
i am sure you will endure until you reach a new perspective that will make it all feel right again.<br>
confronting it and reaching out like this might give you room for new thoughts and energy.<br><br>
sorry i dont have any advice or help to offer.<br><br>
best wishes!
 

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I'm sure that this probably won't help. I can't offer anything from a place of relating directly, but I would like to just say this.<br><br>
You are such a fantastic, beautiful, amazing person. There is such grace, wonder, and beauty inside of you. Every time I see you post, I read it, because you have such an amazingly tender, genuine, loving manner to you.<br><br>
There is no darkness in your heart. You are hurting yourself so badly for no reason.<br><br>
If there's one thing I know about you, from seeing you post... you would never speak this way to anyone else. If they asked, "what good does it do to acknowledge this?" You would answer, "Because a person who is loved and accepted just as they are will find it easier to get through their difficult days."<br><br>
Dearest beautiful heart, please give yourself the kindness, the love, the compassion, and the understanding that you heap upon other people without fail. You deserve it just as much. Maybe more.<br><br>
Can you forgive yourself for this? Can you hold yourself, can you love yourself as you would any hurting person who came to you for love and understanding?<br><br>
Can you gently enfold yourself in compassion?<br><br>
If you read this post, and it was written by someone else... would you say any single one of the ugly things that you say to yourself for feeling this way? Would you understand them, would you be able to tell that person, "I know how you feel, and I don't think that makes you a bad person at all"?<br><br>
Because, Elisabeth, feeling lost, alone, afraid, and in need of love when in the midst of an ongoing crisis doesn't make you a bad person. Feeling fear when you look forward to a lifetime of potential discomfort, this doesn't make you a bad person.<br><br>
You can change your life simply by allowing yourself to accept, and to reach out for, help. You tell yourself that you don't deserve it because of the things you've thought. Would you ever tell anyone else that?<br><br>
Then don't do it to yourself. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/nono.gif" style="border:0px solid;" title="nono"><br><br>
You are loved. You are a beautiful person in a painful and difficult situation. You are doing your best, you are loving the best you can.<br><br>
Sweety, love isn't a feeling. The feeling that we call love is infatuation. What real love is, is a choice. It's when your little one cries, and you want to lay there and ignore, but instead you get up, plod in the other room, and see what the problem is and try to fix it.<br><br>
Love is laying down your life for someone else... and staying alive to do it again tomorrow.<br><br>
It's not about always wanting to be there. It's not about never wishing it weren't so hard. It's about doing it EVEN WHEN everything in you FEELS differently. It's when you FEEL LIKE giving up, but you don't.<br><br>
That's love.<br><br>
You're a tremendously loving mommy. Your love is tested on a daily basis, and no matter how you feel... you always pass the test.<br><br>
Maybe it's time you start acknowledging that? Maybe it's time you forgive yourself for the bad feelings and start loving yourself for the good choices. Maybe it's about time that you stop beating yourself in a manner that you would find horrific and abusive and beyond reprehensible if you did it to anyone else.<br><br>
You are no less a person than someone else. You are not less deserving. You are not less human.<br><br>
You need your own love as badly as your boys need your love. And you're the only one not getting it.<br><br>
Please stop being so hard on yourself. Forgive yourself for being normal. Forgive yourself so that you can start loving yourself. Life's hard enough when you're NOT following yourself around beating yourself with a sledge hammer.<br><br>
"I choose to do everything I can to help my brother with his problems. Except for getting off his back."<br><br>
Get off your own back, dear one. You do not deserve this cruelty you heap upon yourself. I'm very mad at you for treating such a magnificent, beautiful, wonderful, delightful person with such cruelty and spite.<br><br>
You can make it up to me by starting today to show her love and kindness in equal proportion to the cruelty you've been heaping on her. It's a start, at least. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/wink1.gif" style="border:0px solid;" title="wink1">
 

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No judgement, just hugs. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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I think Amris made such a wonderful post and I couldn't possibly come close to saying anything at the level she did. No judgment at all here, lots of hugs.
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
My nephew has Asperger's, and I know my sister-in-law (his mom) felt this way and more. She couldn't come to terms with the lifelong aspect of the problem, was depressed about his - and their - future, and was overwhelmed with the physical, mental, and emotional demands his care placed on her. Unfortunately, she was also burdened with severe emotional issues herself. She finally left to go on vacation along and called several days later to tell my brother she was not coming back. Since then, they have divorced, and she lives across the country. She sees my nephew a few times a year, but she is not really involved in any decisions with regard to his care (her decision). I'm sure she regrets all of this and wishes her and her son's lives could be much different.<br><br>
I think my brother (my nephew's father) has felt something similar as well. For many years, he was able to duck this by removing himself as much as possible from the situation, leaving me and my parents to raise his son. Eventually, things stabilized in his life. The divorce was finalized, and he got a bettter and less stressful job. He also started to take care of himself: learning how to cook, working out, dating. I think all of this helps him face the everyday challenges and the long road ahead. He also still gets a ton of help from my parents (I live 45 minutes away atm). My nephew eats dinner there every weekday and spends a good chunk of every weekend there. My parents also take him to various therapy appointments, keep on him with his schoolwork (he is mainstreamed but with a specialized curriculum), and drive him to and fro from school so he doesn't have to endure the busride. He also frequently spends the night at my parents in order to gve my brother a break.<br><br>
The key for my brother appears to be taking care of himself. This has meant continuing to ask for help, getting mini-vacations from his son (who can be emotionally and physically draining), making time for himself, and realizing that he needed to actively pursue his own interests and life. This has all been made easier by our family, of course. Do you have family members or friends who can help out in a big way, such as take the twins for a weekend? If not, have you looked at respite care from health agencies in your area? Or hiring someone one or two times a week or even a few times a month to make things easier?<br><br>
Also, do you belong to any support groups for parents, either IRL or online?<br>
Have you looked at the <a href="http://www.tsalliance.org/" target="_blank">Tuberous Sclerosis Allliance</a>, the UK's <a href="http://www.tuberous-sclerosis.org/about-tuberous-sclerosis/" target="_blank">Tuberous Sclerosis Association</a>, or Australia's <a href="http://www.atss.org.au/" target="_blank">Tuberous Sclerosis Society</a>?<br><br>
You are doing incredible work. You are swimming across an ocean in very rough waters. As a mother of healthy 6-month twins with no real issues, I'm so impressed by all that must be required of you on a daily basis. I'm sure what you are feeling is completely normal and wish I had more to offer you. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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Honey no one signs up for this....<br><br>
I know I didnt sign up for a child with autism, sensory issues, adhd and a slew of other problems...<br><br>
I signed on for a healthy happy little boy who would play tball with all the other 5 year olds...<br><br>
What I got was a funny happy energetic, unique little guy who will play tball when he is ready...<br><br>
Dont be so hard on your self.. no one asks for a special needs child. You are an amazing mama.. So remember that <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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I just hope you can read Amris' post over and over again and take it deep down inside of you. This is the kind of person you are.<br><br>
The impression I get from reading your post is of someone who is very weary right now. You are loving, devoted, insightful but perhaps too weary to feel much of the joy, satisfaction, and pride you might normally feel about all the things you are doing in your life. It is definitely okay to feel what you are feeling, and I think you will actually feel less stuck when you stop fighting these things. Posting is an important step. I think you should be alert for depression--it's hard to tell when the life situation is just really hard, but if you are progressively getting less enjoyment out of things you used to enjoy (which could mean just feeling good that you are dealing with a very difficult situation as well as you are), then look into that. Also, look at self-care as you can--are you getting enough sleep, are you getting respite that works for you, are you meeting some little basic needs that can help you enjoy all that is enjoyable in your life.<br><br>
Sherri
 

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<div>Originally Posted by <strong>KatWrangler</strong> <a href="/community/forum/post/7888211"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">No judgement, just hugs. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"></div>
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What she said <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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I read your post a few hours ago, and I've been thinking about it on and off all night. The idea that you even had to preface by asking people not to flame or judge you breaks my heart. As if anyone would have the right to do that to you. After everything you've been through and continue to go through.<br><br>
My daughter has such a rare chromosome disorder that we truly have no idea what to expect. Which is great, in a way, because right now we're allowed a lot of breathing room for denial. So I can't come from a place where I can really say "I know what you're going through"- I don't. I won't minimize your issues that way. However, I have an inkling. And in the darkest moments when I'm so worried about the future, and when I imagine the way I thought a perfect life would be, contrasted with what it is, and what it might be in the worst case scenario for dd, I feel so trapped. it feels like:<br><br>
My life was supposed to go this way: /<br>
and instead it went that way: \<br>
and there's absolutely NOTHING I or anyone else can do about that, and that can be such a terrifying and frustrating feeling. The fact that you've fantasized about finding them a different mother is not a symptom of some flaw or weakness in you, IMO, it's a testament to the human spirit and how it wants to survive and thrive. We still try to imagine a way to make things "right", even when we know there is none.<br><br>
The only thing that keeps me going are my spiritual beliefs. I don't expect or want anyone else to have the same beliefs as I do, but I do know it helps me immensely that I believe this was supposed to happen, this child is supposed to be mine and this is my challenge in life, and it's my challenge for a reason and with purpose. I refuse to believe this is all for nothing. And of course, it's not, when you look at the little face of a child and know they depend on you and love you, but in an even bigger sense than that. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> Please don't stay out of this forum, no matter how you feel this is such a supportive place.
 

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Oh, Elisabeth, I know that you are not alone in your very, very complex feelings. I can relate all too well to many aspects of your post, and I commend you for sharing; they are dark and lonely emotions, and I think sometimes that just admitting them---and finding that others share them---can lessen the burden.<br><br>
So, yes, I've had times when I've deeply resented my son for the way he's permanently changed my life. I've had times when I've felt like all he's brought to me is disappointment, one thing after another. Times when he wasn't a person to love, but a project to be worked on. I've had times (usually at 2 or 3 am when he hasn't fallen asleep and is wiggling and giggling in his room and it's the 14th such night in a row) when I've very seriously considered adopting him out, or have wondered what it would be like if he didn't wake up in the morning. No, those are not feelings that "good mom" have, but they are feelings that <i>real</i> moms have, and we are only human.<br><br>
For me, the key is that I don't stay in these feelings. They come, I acknowledge them, maybe talk about them with my dh (fortunately, we usually alternate having these feelings, so when one of us is weak and glum, the other is positive and upbeat), and pray a lot. But then, I have to do some active work to change my perspective. My spiritual life is an integral part of who I am, and I work a lot with God to appreciate my son for the unique being that he is. I don't have answers for whether my son was specifically created the way that he is, or whether his chromosomes and neurological differences just happened; it's not that important to me. What is important is that I can recognize that Gabe does have a purpose in living, that I am a part of that purpose, and that I can see him as God sees him.<br><br>
It's a lot of work sometimes. It's gotten easier over the years, as I've become more accepting of Gabe and who he is (and who he will never be). I wonder if I will someday "arrive" and be fully happy with Gabriel, with my life as it is, and have no more regrets. I don't know that I will. I just have to work on today.<br><br>
I can't say what your answers will be. You are a different person than I, with a different personality, set of beliefs, different goals and needs, and different children. I just want you to know that you are not alone, that you are not a bad mother, and that I think that you will be able to find some nuggets of gold in your life with all three of your boys.<br><br>
Hugs to you,<br><br>
Joni <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/dizzy.gif" style="border:0px solid;" title="Dizzy">: and kids, incl. Michaela (10, sporting a new scoliosis brace and still wheelin' in her purple chair) and Gabriel (8, Down syn. and autism)
 

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<div>Originally Posted by <strong>KatWrangler</strong> <a href="/community/forum/post/7888211"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">No judgement, just hugs. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"></div>
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<br><img alt="" class="inlineimg" src="/img/vbsmilies/smilies/yeahthat.gif" style="border:0px solid;" title="yeah that">:
 

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I'm actually on a self-imposed break from the board but I caught your post and had to reply.<br>
I am really sorry that you were anticipating anything like judgement for your thoughts and feelings. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> It took a lot of courage to post for that reason. I think many of us (I know me) have had similar feelings when facing far, far less. Nothing you wrote is shocking or terrible. Nothing deserves any kind of judgement--from yourself especially. Thank you for being honest. I can't say anthing nearly as eloquent as some have here (these posts have me in tears). However, I wanted to thank you for posting and I hope you find some measure of peace in your heart knowing that you are heard and accepted.
 

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It is so hard sometimes huh? I am so glad you felt you could come to vent and lay out your feelings. Don't judge yourself so harshly, although it comes with the territory. Take care Mama!
 

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Elisabeth,<br><br>
All I can offer is <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> . You are a truly amazing woman! I am on my knees at the end of a single day w/3 kids (some sensory issues) 5 and under. I cannot even begin to imagine what you are going through. I just wish you had come here sooner because if anyone can help it's the wonderful people on this forum! All I can really think of is finding some respite. From reading your post I am getting that you really need to take a break for yourself. Do you ever get a break?<br><br>
Sorry if this reply is lame but I just wanted to offer support...I was on the March expecting board w/you and my pregnancy was a very difficult one...you were one of the most supportive people there!! You are a wonderful wonderful person who is need of a break!!!!
 

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