Anyone else feel angry, bitter, and lonely? - Mothering Forums
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#1 of 30 Old 11-21-2008, 02:17 AM - Thread Starter
 
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It seems to me that I hear a lot of SN parents talk about how "blessed" they are, or how they're so thankful they have their sn child, or they wouldn't change things even if they could... They often say that having a sn child brought them closer to god, or made them a better person...
Am I the only one here who is... well, the exact oposite of everyone of those comments? I'm having an especially hard time with friends and family right now being extremely ignorant. Nobody seems to understand or even have a clue what my dd and I go through on a daily basis. :
Not even my husband gets it, which is probably my fault because I take on dd2's health care pretty much exclusively.
Some things were said by some family members tonight that has just left me feeling very...
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#2 of 30 Old 11-21-2008, 02:24 AM
 
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You're not the only one. I love my SN kid to death and she has blessed our family immensely. However, I would give anything for her to not struggle the way she does and to lead a typical life. It's extremely difficult on my marriage and on my other kids to deal with all of her medical issues. I wouldn't wish that on any family but it is what it is. My older kids have an amazing sense of compassion for anyone they see who's struggling medically and I credit that to having a sister with SN.
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#3 of 30 Old 11-21-2008, 02:24 AM
 
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No input, just support. I've had my moments parenting a child with SN. It's not all lollipops and puppies, is it? Especially the comments from others.
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#4 of 30 Old 11-21-2008, 04:01 AM
 
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You're not alone. I have such moments as well.

I love my daughter. But I hate the ASD. I would give anything to take it away from her because I can see how much she effort she has to put into typical things that other kids and other families take for granted. It's not fair to her and it's not fair to us. So no I don't feel blessed by ASD.

Normal is just a setting on your dryer.
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#5 of 30 Old 11-21-2008, 09:33 AM
 
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Trust me, you're not alone! I wrote a venting blog about it last Spring, I think, probably around the March timeframe? You can go back through my blogs to find it if you want.

I DO love Connor, I AM blessed by him, as I would be by any baby. I DO think he's taught me things that a typical child would not have taught me. And I AM thankful for that. But I *WISH* that I didn't have to learn it, you know? I have become a different, and in many ways a better, person/parent because of him, but I was happy the way I was before, too.

Right now, Connor is happily oblivious to the fact that he's different. So it's not as huge an issue. I wish he didn't have to go through all the painful medical tests, procedures, and surgeries he's had. But right now, he isn't suffering majorly. I know that will change. I wish it wouldn't, but it will. People are already starting to look at him funny, ask me probing questions, etc, and I HATE HATE HATE that the day will come when I have to explain to Connor why someone is doing that. I know that his future has many question marks in it, where will he function cognitively? Will he ever be verbal? How many more surgeries? Will he ever outgrow his immune deficiency so he can go play like a normal child? These all weigh heavily on me at night, but by day he's bright, happy, laughing, causing trouble... Of course I love him, but I WOULD make him "better" if I could. I would never not have him, but I would fix him.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#6 of 30 Old 11-21-2008, 10:18 AM
 
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I feel that way too sometimes. {{{Hugs}}}

Sincerely,
Debra, homeschooling mom of 4 ages 12, 11, 9, and 5 1/2
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#7 of 30 Old 11-21-2008, 12:03 PM
 
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For me, saying how hard it, how unfair it is, how I wanted my life to be different is a moot point. You don't get to choose the randomness of life...it happens.
So, in that vain, focusing on the positive aspects of this tragedy make more sense for me. I like to feel that I have 'gained' something instead of thinking that things were 'taken away' from me.
Now this doesn't mean that I haven't struggled with this, that I don't occasionally feel angry...but I don't let this consume me. I find my way back up and these days I stay there longer and longer.

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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#8 of 30 Old 11-21-2008, 12:41 PM
 
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TOTALLY relate! I am feeling awful this morning cause I had another one of those dreams... Do you all get those? The dream that seems so real you had yourself convinced it was reality. The dream where your baby is getting better and acting like a normal baby? (I also had myself convinced it was Saturday and there are donuts in the cabinet. ) When dh woke me up to tell me bye, and I realized it was not Saturday, there were no donuts, and my baby was still disabled, I could have cried.

Juju is a blessing cause all children are. Juju teaches me things cause all children do. But no, I do not believe God has specially chosen to do this to my child for our benefit. If I believed that, I'd stop believing in God, cause no one good hurts a child in this way on purpose. I think it is just life - sh*t happens. I'm getting better at just accepting that rather than feeling angry, but there are always moments. I don't think anything can drive away the grief, but time lessens it.

One thing I did realize the other day that helped a bit - I was driving along in the car and I shook my fist at the sky and said "you better take care of my baby." And then I realized as much as I love my baby and will fight for his right to exist and have a beautiful life... God loves us more. Just as we hurt for our babies' pain, he hurts for ours. He can't take our pain from us any more than we can take it from our babies, cause to do so would take our free will as well.
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#9 of 30 Old 11-21-2008, 01:42 PM
 
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I get it, mama. I do.

I def. have my moments and these feelings cycles, you know?
It really helps me that I have a group of mom friends close by that are also sn moms. We get together regularly and this really, really helped from from going over the edge. I met all of them through boards like this one.

I wonder if there may be other sn moms near you?

(((big hugs)))

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[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
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#10 of 30 Old 11-21-2008, 02:16 PM
 
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I don't really understand what people mean, when they say they feel blessed. In fact, I am pretty sure that more often than not, when they say that, they mean the opposite of what they are saying.
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#11 of 30 Old 11-21-2008, 02:22 PM
 
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I hear you. It's been more difficult to parent Carter than I ever would have imagined parenting a child could be. I love him, and it's been a really, really hard 6 years.

Be gentle with yourself. I think it's pretty normal to feel that way, but since we don't talk about it (because it's socially unacceptable in most circles to speak of mothering as anything other than beautiful, fulfilling, etc.), we feel like we're unusual in our pain and frustration. When our feelings get deeper, toward despair, rage, etc., we think we're bad. It's not true; it's a cultural set-up. Parenting is never all wonderful, and as we all know, being the parent of a SN child is exponentially more difficult than parenting a typical child.

I hope you get the support you need and that you feel better soon.

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#12 of 30 Old 11-21-2008, 03:45 PM
 
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I've felt that way too. I will say I felt that way much more when my son was younger. Anger was part of the grief process for me. And for many people a special needs child does bring a grief process. I struggled a lot spiritually in coming through the grief process too and came to the same conclusions as 2bluefish.

The loneliness of special needs is why I'm here. That didn't go away and I still don't have any friends around here with special needs kids. No one can really understand but my best friend over the years has "got it" better than she did the first couple of years. In that time frame my husband was in denial and my family too. So I really was alone. Those were so hard and lonely for me. Time helped family to get it.

Edited to add: some special needs parents maybe even many find that they become depressed at some point and medication can be helpful to get back on track emotionally. I took anti-depressants for a year or so when my son was two and it did help me.

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#13 of 30 Old 11-21-2008, 08:44 PM
 
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Hug: This is not an easy road we walk. Not for any of us. Ever. Sometimes I hate how much of a roller coaster it is too. Some days I feel invincible and others truly shattered. How can this all be part of the same experience? All I can say to you is that you are not alone in how you are feeling. I have at many times felt blessed and I have also felt genuinely cursed. I have raged against this experience, what has happened to me, to my son, to all of us who are impacted by this experience, but then I have also felt what I believe is "true wisdom" and "true life." This is about as real as it gets. My life is authentic. For some reason, I have been chosen to be the mother to this incredible little spirit. We are forever linked. There must be some reason to this madness. I guess in some ways it does have to do with faith. And I don't mean faith in regards to a specific religion necessarily. Just faith in life and the power of love and the power to grow and live through and fully present in the the darkest and scariest of experiences. There is something to be said simply for this experience. What it is like to go to your absolute edges. It can be incredibly painful, but just like in birth if you can ride through the pain, there is a lot of value in that experience. But again it is a fine line to walk between pain and suffering. Pain simply is. Suffering is the story we tell ourselves--the what if's, the search for the way out, the why me's. It is okay to be there for a little while but when you see that is what is happening, it is good to rise out of that too. I wish you strength and hope you get to rise up to the next peak of the journey soon.

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#14 of 30 Old 11-23-2008, 08:09 PM
 
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Originally Posted by starlein26 View Post
.
..... focusing on the positive aspects of this tragedy make more sense for me. I like to feel that I have 'gained' something instead of thinking that things were 'taken away' from me.
Now this doesn't mean that I haven't struggled with this, that I don't occasionally feel angry...but I don't let this consume me. I find my way back up and these days I stay there longer and longer.

Wow..you nailed it. I feel the same way. I don't always feel blessed but then I have my "moment" and keep on going..I think about how great I do have it(in comparison to some) and what their strengths are.. I have to for these kids..I'm the only one who would do anything for them and they are counting on me!
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#15 of 30 Old 11-23-2008, 09:34 PM - Thread Starter
 
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I hear you. It's been more difficult to parent Carter than I ever would have imagined parenting a child could be. I love him, and it's been a really, really hard 6 years.

Be gentle with yourself. I think it's pretty normal to feel that way, but since we don't talk about it (because it's socially unacceptable in most circles to speak of mothering as anything other than beautiful, fulfilling, etc.), we feel like we're unusual in our pain and frustration. When our feelings get deeper, toward despair, rage, etc., we think we're bad. It's not true; it's a cultural set-up. Parenting is never all wonderful, and as we all know, being the parent of a SN child is exponentially more difficult than parenting a typical child.

I hope you get the support you need and that you feel better soon.
Thank you for writing this. I think you really hit the nail on the head for me. In fact, one of the more recent things that has happened that's been bothering me kinda relates to this. My sister blogs and had a snipit on my dd2 and her g button. She TOTALLY put misinformation about how we had a g button placed because she has a heart defect. (She does have heart defects (HLHS and WPWS) but that's NOT the reason she eats with a button) So I commented in the post and explained why she has a g button (vomitting multiple times a day, FTT, multiple tests and meds, had a fundoplication that caused dumping syndrome, put on continuous feeds instead of a medication we were not told of, lost her suck, and never learned how to eat. oh yeah, and she STILL vomitted multiple times a day for 17 months with no answers to why. Thanks for all your help Dr. O) Anyway... so I wrote the whole story out. A lot of her in laws read the blog and I just wanted to set the record straight on WHY my child still doesn't eat with her mouth and WHY she stopped in the first place. So what did she do? SHE ERASED MY COMMENT. that's it. She didn't edit her post or anything. When I called her to find out what the deal was, she said she erased it because it was "too angry." So I told her she can't blog about my kids unless she's at least being accurate. She didn't correct it though, she just took the whole thing down then... I guess the truth wasn't rainbows and sunshine so she didn't want it up. We haven't spoken since....
I don't know, it jsut seems like a lot of my family likes to "sugar coat" things about my dd2 and when I talk turkey about the reality of it and possibilities and complications they get uncomfortable. Even my husband has gotten on to me about it. Like when someone asks how she's doing I'm supposed to just reply "she's doing fine!" even if that's not the case! You know, don't want anyone to feel bad for us or get uncomfortable.

Anyway, I'm feeling better today. I think it comes in cycles and I must have just been in a low point. Thanks everyone for your kind words.
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#16 of 30 Old 11-23-2008, 09:43 PM
 
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We are currently in a bad cycle and I have been crying just about daily. I've totally cut out yelling, and it hasn't been easy for me at all. But ds1 is upping the anti everyday. People have told me this is normal but I just feel like I'm working so hard and things are actually worse. So yeah, I'm with you right now. It's definately cyclical (can't spell to save my life!).

 
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#17 of 30 Old 11-23-2008, 10:55 PM
 
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it took me a loooooooooong time to feel okay with dd's diagnosis. It comes and goes, cyclically, as pp said.

My personal and spiritual beliefs definitely do help me deal in my own way but I am not prone to overly sugary sweet description of how great everything is if that's not how I feel. For the first year of dd's life at least once a month I would have hysterical crying breakdowns. But they got better. Now I might cry for five minutes and get on with my day. Or I might have a whole day of feeling frustrated and aggravated.

Everyone's children's diagnosis here are totally different so it's really hard to generalize. I personally found my dd's health issues the #1 most stressful and nervewracking, and thank God, most of those are resolved now and I don't have a black cloud of future surgery or the next test results hanging over my head. Now I primarily struggle with behavior and communication issues. I tend to withdraw when I'm feeling frustrated which does NOT work with an active toddler! So rather than the hopeless and devastated emotions I had to overcome in the first year, or the confusing and sometimes scary feelings of figuring out dd's prognosis and treatment in her second year, her third year is really frustrating and exhausting for me. It HAS definitely gotten easier, much happier, and better...but that doesn't mean everything is lollipops and rainbows.

I think that's a coping mechanism some people use; "Everything is FINE, we're happy the way it is, wouldn't change a thing, meant to be etc." And who am I to criticize if that's what works for them? But no one should be made to feel that they're failing if that's truly not how they feel. It's normal to experience negative emotions under a ton of stress! And I try to embrace that when I'm really overwhelmed and actually encourage myself to take a little bit to cry, or feel bad for myself or DD, and just let that wash through me and then when it passes I can move on with my day.

DD1 7/13/05 DD2 9/20/10
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#18 of 30 Old 11-24-2008, 12:26 AM
 
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it took me a loooooooooong time to feel okay with dd's diagnosis. It comes and goes, cyclically, as pp said.

My personal and spiritual beliefs definitely do help me deal in my own way but I am not prone to overly sugary sweet description of how great everything is if that's not how I feel. For the first year of dd's life at least once a month I would have hysterical crying breakdowns. But they got better. Now I might cry for five minutes and get on with my day. Or I might have a whole day of feeling frustrated and aggravated.

Everyone's children's diagnosis here are totally different so it's really hard to generalize. I personally found my dd's health issues the #1 most stressful and nervewracking, and thank God, most of those are resolved now and I don't have a black cloud of future surgery or the next test results hanging over my head. Now I primarily struggle with behavior and communication issues. I tend to withdraw when I'm feeling frustrated which does NOT work with an active toddler! So rather than the hopeless and devastated emotions I had to overcome in the first year, or the confusing and sometimes scary feelings of figuring out dd's prognosis and treatment in her second year, her third year is really frustrating and exhausting for me. It HAS definitely gotten easier, much happier, and better...but that doesn't mean everything is lollipops and rainbows.

I think that's a coping mechanism some people use; "Everything is FINE, we're happy the way it is, wouldn't change a thing, meant to be etc." And who am I to criticize if that's what works for them? But no one should be made to feel that they're failing if that's truly not how they feel. It's normal to experience negative emotions under a ton of stress! And I try to embrace that when I'm really overwhelmed and actually encourage myself to take a little bit to cry, or feel bad for myself or DD, and just let that wash through me and then when it passes I can move on with my day.
Really well said.

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[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
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#19 of 30 Old 11-24-2008, 03:31 AM
 
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Tomorrow will be the 1 year mark for the official word that DS has Ds.

I do not feel blessed to have a child with special needs. I feel blessed to have 2 beautiful, healthy children. There is a difference for me.

I love him so much (my grief did not allow me to fully feel this love for many months) and waited so long to have him (2+ years of trying to conceive).

I think I have moved beyond the "I'd take it away if I could" feelings now that DS has blossomed into a little boy with such a spirited personality. I can't imagine him any other way. On the other hand I fully expect to have moments of sadness, regret, anger, and more has he grows and interacts with the sometimes ignorant and cruel world.

I think it's important for us to be kind to ourselves and allow ourselves to feel and express our sometimes not very PC feelings. I personally was shocked by my intense feelings of rejection I felt in the early days of processing the fact that DS might have Ds. I was disgusted with myself for feeling that way. But once I stopped shoving those feelings away and started to allow them to come to the surface they became easier to deal with and I eventually moved beyond them. At the time it seemed impossible that I could ever feel differently.

Hugs to you Momma. You are not alone.

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#20 of 30 Old 11-24-2008, 11:46 AM
 
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I really never understood when people said that too. I am blessed to have dd1, but if tomorrow I could take away her daily struggles and challenges I would in an instant....I mean to have her just like everyone else would be wonderful....
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#21 of 30 Old 11-24-2008, 03:09 PM
 
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I am bitter and angry about 95% of the time. The other 5% of the time, I'm sobbing someplace private. I feel shafted by DS's medical issues, and I don't feel blessed at ALL to be dealing with them. I'm a nurse (used to work in peds intensive care), so I understand more about his issues than a lot of people would, and I know the stakes are pretty high right now (if he grows intolerant of the single source of nutrition he has right now, he'll die). Nobody in my family wants to hear that, and since I won't let them say, 'oh, he's FINE, he's going to be FINE' anymore- because that's patently untrue- many of them just don't talk about it.
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#22 of 30 Old 11-24-2008, 04:29 PM
 
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You're not alone. I have such moments as well.

I love my daughter. But I hate the ASD. I would give anything to take it away from her because I can see how much she effort she has to put into typical things that other kids and other families take for granted. It's not fair to her and it's not fair to us. So no I don't feel blessed by ASD.

This exactly, but subsitute DS for DD. Having an especially hard phase at the moment too, so I think I'm at the most negative point I've been since we first realised he had autism.
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#23 of 30 Old 11-24-2008, 06:14 PM
 
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This is why I've spent the last 2 years working on the project in my sig. Hope this doesn't come off as a sales pitch--infact it won't be available for some time still, so I couldn't sell it anyways. But I hear you, loud and clear, and I wanted to feel less alone and have others know that it's not all hearts & flowers.
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#24 of 30 Old 11-24-2008, 06:34 PM
 
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I felt this way a lot in the beginning after my son was born. After his transplant and things settled down more (which was close to two years afterward) I was able to not think about it so much and start to feel like we were "normal." When he gets sick or a lab comes back wonky I get reminded of how normal we are not (I mean, define "normal" - I wrote a whole blog entry on what it meant to us) and I tend to get pretty depressed and feel so lonely and isolated. In the beginning I wondered what I had done to deserve this. When you have a baby that goes through it it feels like it is happening to you. It took me a while to realize that this was his path, I am joining him on it but it's nothing I did to make this happen to him.

Every now and then I feel lucky to have been chosen by him but sometimes I don't feel like that. It's tough.
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#25 of 30 Old 11-24-2008, 09:04 PM
 
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TOTALLY relate! I am feeling awful this morning cause I had another one of those dreams... Do you all get those? The dream that seems so real you had yourself convinced it was reality. The dream where your baby is getting better and acting like a normal baby? (I also had myself convinced it was Saturday and there are donuts in the cabinet. ) When dh woke me up to tell me bye, and I realized it was not Saturday, there were no donuts, and my baby was still disabled, I could have cried.
I have those dreams too. Pretty much on a weekly basis or so. The last one was that DD rolled over, grabbed my hairbrush, and handed it to me. About what a 14 month old might do.

As for the "blessed" thing....I might consider myself blessed to have a beautiful daughter. I am NOT blessed by her special needs. I am NOT blessed by the fact that I will most likely outlive her by many years. I am NOT blessed by the horrible decisions I have to make regarding her care.

I accept her for who she is, but I'm pissed and sad that she has such a difficult life. And if you just read something almost word for word on another board, it's because I did indeed just post that somewhere else.
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#26 of 30 Old 11-24-2008, 09:52 PM
 
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It seems to me that I hear a lot of SN parents talk about how "blessed" they are, or how they're so thankful they have their sn child, or they wouldn't change things even if they could... They often say that having a sn child brought them closer to god, or made them a better person...
Am I the only one here who is... well, the exact oposite of everyone of those comments? I'm having an especially hard time with friends and family right now being extremely ignorant. Nobody seems to understand or even have a clue what my dd and I go through on a daily basis. :
Not even my husband gets it, which is probably my fault because I take on dd2's health care pretty much exclusively.
Some things were said by some family members tonight that has just left me feeling very...

(((HUGS))) Mama! I agree that it is often harder than I ever imagined. I also find there often isn't much support available. Just wanted to say I will be thinking of you, hang in there.

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#27 of 30 Old 11-24-2008, 10:35 PM
 
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Originally Posted by preemiemamarach View Post
I am bitter and angry about 95% of the time. The other 5% of the time, I'm sobbing someplace private.
That. My pregnancy with DS nearly killed me. Everyone told me to terminate, but I figured we just had to get to the birth, just get him born, the prize at the finish line etc. And that was just the start of this whole nightmare. I don't know how much longer I'm supposed to take it. My marriage is in tatters, I'm lucky to get two hours of sleep a night total, I can't go out in public, I have no friends left, and DD is left on her own for hours every day. A nine month old. While I sit with DS and get hit, kicked, bitten, my hearing is nearly gone in my left ear...

I don't feel blessed. Enlightened. At peace with how fate works. None of that.

I'm angry, depressed, and all the rest.
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#28 of 30 Old 11-24-2008, 10:45 PM
 
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Our problems cycle, and we're in a good spell right now, so I am not feeling so angry and overwhelmed. When we hit a bad patch, though, oh yes. I had a really, really hard time a few years ago, when the tantrums were daily and violent and I could see people backing away because they didn't want to deal with it -- my DH was working too much and I was alone with a kid I frankly hated and a baby who needed me all the time too -- and yeah. I am not sure how I made it through that stage, really, other than in slow baby steps and with some therapy. I still have spells where I just find it really difficult to cope with the day-to-day, but it gets easier.

I think the key for me was finding something other than caring for him that I could do -- friends that would take some of the burden off -- making sure my hubby knew that he really did have to contribute to the housework -- having enough time off. I wasn't too successful at the time at getting it but now DS is in school all day and that helps more than anything.

And I too would take it away if given the choice. This is not a beautiful thing in my eyes. Just as I give him glasses to correct his vision, we give medication to help what is definitely a problem in his life. I am sure that he will be okay as an adult, but getting there is going to be harder than any of us want it to be. He's already very aware of how it affects his life (he has Tourette's, ADHD, mood disorder not yet labeled) and it sucks. We support him as we can but I would lift the burden from him -- and us -- in a second. If only I could.
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#29 of 30 Old 11-25-2008, 12:15 AM
 
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I too go through cycles. Sometimes I feel angry and overwhelmed and other times I'm thankful for what I've learned through all of this. I don't think it's fair to say that if people say they're blessed that they're trying to actually say something else. I have received some blessings in all of this.

I think what you're feeling is so normal and I understand.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
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#30 of 30 Old 11-25-2008, 03:18 AM
 
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I adore my child but I get so mad at the ASD. And not a day goes by that I don't imagine the boy he would have been without the language and social delays. He's so bright, so handsome, so kind & gentle. I want the world to love him as much as I do, but he's different and that makes him harder for others to accept him.
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