Grief and guilt....a sad venty...woe is me post.

[momtoS]

Okay...just wondering how all the moms here deal with the feelings of grief and guilt.

I feel sad about the fact that my child is not perfect.

I feel sad that my other child has to wait for things or has to deal with things because of my SN daughter.

I feel sad that my SN daughters life will be difficult.

I feel sad that my *normal* daughters life will be difficult.

I feel sad that MY life IS difficult.

I feel sad that DH isn't on board with the diagnosis and that makes life hard.

I feel sad when people stare at dd.

I feel guilty that I had hyperemesis while pregnant and that if it was better controlled maybe this wouldn't have happened.

I feel guilty for denying my other daughter fun because of my SN needs daughter.

I feel guilty that I LOVE the time dd spends at school (2.5 hours a day), it is so peaceful!

I feel guilty that I have bitter feelings towards dd sometimes.

One thing I feel really sad about is....something I would never admit in real life. I feel sad that I can't have more children. I mean I thought I was done..but I guess it is hard to have the decision made for me. I would have hyperemesis again. I can't be sick....dd needs too much help. I would have someone else to take care of.....I can't because dd sucks all of my time and energy out of me. I would have another child that will grow feeling that dd got all the attention and probably feel bitter towards me....

I feel really really really really really really guilty that I don't see this daily struggle as a blessing that I have learned so much from. I hate this...I hate the meltdowns...I hate all the therapy stuff....I hate spending money on weighted blankets etc instead of fun stuff. I feel bad that I am not one of those parents that say they wouldn't change it for the world. I would. If I could wake up tomorrow and have my daughter be a normal average child....

I WOULD.....

[storychick]

mama

I feel the same -- if I could do it, I would. Not so much for me, though it would be lovely -- but for DS. Because his life is just harder than it needs to be, life is hard enough. Because my DDs would be better off, because DH and I would be better off. I hate that everything is made so hard by it.

And then I suck it up and move on, like I know you do. Once in awhile you just have to let that bitterness out because it will destroy you otherwise -- but you have to get over it, too, until the next time, or you miss the joy in life. Cause that's there too, mama, even when its hard to see sometimes.

You are not alone. Hang in there.

[newmothermary]

My DD's issues are different. She is non-mobile and is globally delayed. The bitterness and anger though, are the same.

I too have moments where I resent my DD for the "imperfect" world we have been thrust into. For "stealing" away what should've been innocent albeit typically frustrating parenting experience, but an experience that is at least typical. I too feel mega guilty and can't do much about it. I keep reminding myself that it's not her fault. Its not her fault. An sn child deserve every right to be loved and happy, the same as anyone else. I remind myself of this all the time. I too, feel guilty for feeling good for the time she is in E.I classes (2.5 hrs.) Those are the hours of the day that I don't have to rack my brain for new ideas to entertain her that is not plopping her in front of the t.v and feel the guilt bubbling within me.

I feel sad too, mostly for her, but for me as well. I didn't ask for this, but neither did she. It is so damn hard to find my happy place within this world.

((((hugs)))

Mary:

[sbgrace]

I think the things you're feeling are so common. I'm glad you feel free to express it here. I think these feelings are part of the grief process that comes with special needs. And it tends to come in waves over time at least for me. I also wanted to mention that special needs parents have a much higher rate of depression. Anti-depressants pulled me out of a really dark place when the boys were younger.

[pixiekisses]

My SN kids are perfect.
And they are not abnormal either, what's normal, really?

Sorry, I was a bit offended by your post, sounds like SN kids are abnormal and unperfect, that's not true for my kids. I'm trying to be zen here and think that you didn't mean it that way and certainly not offensive.

[christinelin]

I really identify with a lot of what you said, but especially this:

Originally Posted by momtoS

I feel really really really really really really guilty that I don't see this daily struggle as a blessing that I have learned so much from...I feel bad that I am not one of those parents that say they wouldn't change it for the world. I would. If I could wake up tomorrow and have my daughter be a normal average child....

I WOULD.....

I feel like there is a lot of pressure in the world of special needs to be a saint and to see this all as God's blessing for your faithfulness. I am a faithful person, but I totally don't see it that way and it makes me angry.

I also feel like, especially in AP circles, it is evil to say that parenting is hard. It's supposed to be all sunshine and rainbows and it is not.

I will say, that this is all so much better now that my own depression is under control. I am a big believer in meds and therapy and I highly recommend them if these feelings persist.

X-posted with pixie kisses

[sbgrace]

OP,
I'm not offended in the least. I can't imagine taking offense at the honest feelings you expressed. And feelings that many of us have felt at points on this journey.

Pixiekisses--neither of my kids are perfect..the one with special needs or his twin. Neither am I nor my husband or anyone else I love. And the OP didn't use the word abnormal but everyone I know is abnormal in some way...not just my kids. My special needs kid has more abnormalities than is typical and I wish he didn't struggle like he does. I don't see what's offensive about that. I also don't see what's offensive about being sad that things are harder for your children because of special needs? I'd take away my son's mitochondrial disease in a second if I had the chance. I so wish he wasn't facing that in his life. Surely you don't find that offensive? What if he had cancer? I am positive my parents would have taken away the OCD I struggled with all my life. I don't find that offensive either..I wish that were possible. There are other aspects of my son's special needs (autism, ADD, mitochondrial) that I believe will limit him. I'd take away all my kids struggles if I could though clearly that wouldn't be wise! We are what we are for our experiences. But it's hard to see your child struggle.

And, finally, there is a grief process for many if not most parents facing special needs. Grief process that involve universal feelings or stages including: shock/denial, pain/guilt, anger/bargaining, depression/loneliness as a person moves towards acceptance. I hit every one of those stages on this trip..some multiple times. I'm sorry the OP's post offended you but maybe if you looked at it from that perspective it might help.

[MSUmama]

Originally Posted by pixiekisses

My SN kids are perfect.
And they are not abnormal either, what's normal, really?

Sorry, I was a bit offended by your post, sounds like SN kids are abnormal and unperfect, that's not true for my kids. I'm trying to be zen here and think that you didn't mean it that way and certainly not offensive.

Really? Wow...I pm'ed the OP thanking her for saying what I was afraid to.

My SN child is the youngest of four, and while the other three are not SN, they are neither perfect nor normal. I don't know what those things really mean but I do know none of my children, nor DH or I are those things.

Our SN dd is LESS normal than our other children. It is painful to watch her struggle with things that should be joyous. Presenting her with a new toy is painful, she wants to touch it so badly and her tiny body shakes as she tries to overcome her fears. She often screams in distress when strangers approach her to tell her she's cute. Sorry, that is not normal and it is not what I would wish on any child. Her world is terrifying. That is not normal, even if I can't define what normal is.

I am not trying to be offensive at all, just trying to be okay with my feelings about my child and her situation and I am so thankful to the OP for being brave enough to speak up. If you don't share her feelings, fine, but is it really fair to call them offensive?

[Guinevere]

Originally Posted by pixiekisses

My SN kids are perfect.
And they are not abnormal either, what's normal, really?

Sorry, I was a bit offended by your post, sounds like SN kids are abnormal and unperfect, that's not true for my kids. I'm trying to be zen here and think that you didn't mean it that way and certainly not offensive.

I think the title of the OP's post should have been fair warning that she needed a place to be sad, to vent, and to not be positive about what her family goes through. We all have these moments, I know I sure do! Let's not diminish her need to be heard just b/c the message isn't a pretty one; if we can't let our bad hang out here with our good, then where can we feel safe to do so? Certainly not amongst the general public, whose understanding of life with a SN child leaves a lot to be desired -- we're either angels from God who are "blessed" with our SN children or poor souls to be pitied for our terrible lot in life; neither viewpoint is accurate nor helpful in trying to just live life as best we all can, day by day. :

OP, I'm sorry you're in such a low place right now; it makes everything so much harder, doesn't it? I hope that you find support here and in IRL to help pick you back up when you've fallen, and would echo the idea that therapy and/or meds may be a valuable thing to explore if you feel this way more of the time than not.

Guin

[preemiemamarach]

my feelings are primarily anger, not sadness. And Guin hit the nail on the head- I get SO sick of people telling me what a 'selfless' person I am for what we do for our son. What are we going to do, give him to the elk in our backyard? We love him, he's our child, we would move mountains for him (and have). I hate it for him, I hate it for us, I hate it for his soon-to-be-sibling.....I don't have room for guilt and sadness right now because I'm just too freaking angry about it all.

[2bluefish]

I don't feel guilty, but I do feel sad and angry sometimes. Maybe my mom's right and I do have too much self esteem, cause I feel pretty proud of myself for finding some things to call blessings in this, for digging deep and trying to learn from it. I don't think there is anything that is intrinsically a blessing in life being made harder for us all. I do believe in God, and I do believe that he has watched over us. There are too many coincedences in Juju's story that lead to his being alive and doing as well as he is. But I don't believe God purposely caused this to teach us some lesson. No good God would purposely hurt children. I more look at it that natural consequences of the turning of the world set up a situation where Juju was going to be injured, and God is helping us through it.

I would encourage you if you can to let go of guilt. Your feelings are totally normal. Lot's of us feel the same way. You don't have to feel guilty for feeling that way.

[pixiekisses]

To clarify, which is needed. I didn't say the OP was offensive, I said I was offended. Those are my feelings, my resposibility.
And I'm not saying any of us are perfect, I'm just saying that my SN kids are as perfect as the kids w/o SN, ours that is. Neither of us are perfect, but we are equally not-perfect. Hard to explain here.
And like I said, what's normal? None of us are probably normal either, me and my dear included, and all our kids. But, what's normal? Our SN kids aren't more abnormal/normal/un-normal than any of us w/o SN. They are just different. They have som special needs we don't have.
See my point here now?
And that's again, my feelings.

I am not one of those that thank God for our kids SN, first, I do not believe in God, never have, never will. I'm an atheist. So I don't see us blessed or anything. Second, I wouldn't really thank anyone for it, even though it has made us very strong, we learn so much, but still, watching the kids struggle and being in pain, not being able to breathe, being sick, in the hospital etc. is not something I would want for them. (Obv.)
I would take away my kids SN in a heartbeat if I could and it wouldn't change who they are. I don't love them for their SN, they are so much more, I love them for who they are, and of course, being my kids help. ( )
However, I am thinking that ok, we got this child, what can we do about it? Make the best of it, vent, be sad, grief, have hard times, be guilty, be happy, learn from it, grown on it, be stronger etc. There are so much, so many feelings, so much to this. We all know that. I understand the grief process too, been there, done that.

I appologize for whatever happened here, I said I was sure the OP didn't mean to come of as offensive, and really, me getting offended isn't the OP's responsibility. I don't know what it hit, but something inside me obv. Might be that my heart breaks every time my kids can't do the same as others their age, and others see them as less normal or perfect, to me they really aren't. I'm sorry, vent away.

[Literate]

Hugs, Mama. I think understanding that your grief is perfectly, um, normal is part of the road we are on, as SN parents. It's ok to be sad. Maybe review the stages of grief? With your DH, even?

[MSUmama]

I think my guilt comes with having had hyperemesis, at least in part. It made for a miserable pregnancy and I was (am) furious with my body for betraying my baby. I felt unable to properly nourish my baby and worried constantly. Nothing in my life has been that frusterating or depressing. And now I wonder, did something not get absorbed properly in her? Did the meds I was on cause this? Was it just the constant feeling of misery that overloaded her little systems?

Given that the OP also referenced hyperemisis, I wonder if those who didn't have that experience don't carry the same kind of guilt?

As a mom, I can't begin to explain how it feels to have your own body react so violently and horribly to such an amazing, wonderful experience. I absolutely feel guilty for that, like I am somehow flawed as a person because my body could not accept my pregnancy in a healthy way. I've also had several miscarriages and I think the combination of those lost babies and horrible pregnancies is just an enormous burden.

Guilt is def a part of this package for me, in spite of our docs best efforts to convince me it's something other than any of the things I think it could be. I have a new list of things I could possibly be doing wrong everytime we see him. Is it too much protein, not enough? Could the sensory issues be because I cuddled her too much as an infant? What about co-sleeping? Could that bother her and she just not know enough to convey it? The list goes on and on...

[ShadowLark]

Hugs, mama!
As to the hyperemesis question - my sister had that, too. I can't say a thing about the guilt or grief aspect of it, I never even had NORMAL morning sickness, so obviously, I have no clue. But fwiw, my niece is completely NT, and she's the baby who my sister had hyperemesis with. My sister even needed to go to the Hospital for fluids many times and ended up on bedrest with early labor and had a C Section at 36 (I think) weeks. My sister lost weight through her entire pg and Sofie was STILL over 6 lbs at birth. (To be fair, my sister needed to lose weight. If she'd been at her "normal" to start, that could have been a MUCH scarier situation.)
Pixie kisses - I'm glad you clarified, and I'm not trying to invalidate your feelings at all. But my son (with SN) is CLEARLY NOT in the same place as my daughter (NT). I was offended by your first post and now that you've clarified, I think I know why.
This is hard. It's hard and it's excruciating and it scares me half to death. I mean the thought that I'll NEVER be able to communicate with my son in any meaningful way is just beyond terrifying! So for you to say (and this is how it sounded, not necessarily what you said) "oh, no biggie! He'll live in his own little world, but who cares, he'll be happy. At least he's healthy, that's all that counts, right?" makes me want to scream and cry and tear you to pieces. It's a HUGE biggie - we're all human. Even the most severely Autistic person in the world, who seems happy only when alone and not being bothered, still needs human contact and connection. Without that food for the soul, that person will wither. Madness might be a realistic outcome, because how ELSE does a person cope with total and complete isolation forever? The human mind cannot handle that fate! It is the WORST of all tortures. So how dare ANYONE say that it's GOOD?
Add to that the fact that my heart is breaking every day because my little boy is having SUCH a hard time with the basic skills of communication which are SUPPOSED to be second nature, and I guess my getting offended makes sense. I just want to be able to share the world with him, like I do with his sister. Motherhood is supposed to be an endless love affair - it's completely unfair when something screws that up. And please don't misunderstand - I love my boy to death and he loves me. But we can't EXPRESS that love without a major struggle. We can't share it. THAT is completely unfair.
I almost wish this were something physical. Cancer seems easier - at least with cancer, you can fight BACK! How do you fight a foe this ephemereal?

[sbgrace]

Originally Posted by MSUmama

Guilt is def a part of this package for me, in spite of our docs best efforts to convince me it's something other than any of the things I think it could be. I have a new list of things I could possibly be doing wrong everytime we see him. Is it too much protein, not enough? Could the sensory issues be because I cuddled her too much as an infant? What about co-sleeping? Could that bother her and she just not know enough to convey it? The list goes on and on...

I imagine personality plays into the guilt feelings (or lack of) for some people. But I also think certain things are more likely to make a mom tend toward guilt. For example, I don't feel any guilt about Andrew's mitochondrial disorder. I think things like genetic mutations and DNA mutations and stuff like that feel more out of our control perhaps..at least to me. I didn't cause a mutation in his DNA other than through my own genes. But stuff like autism and sensory issues and all make a person wonder more. If Andrew had been an only (instead of a twin) I'd have tons of concern over our pregnancy. We had a lot of interventions due to preterm labor starting at 24 weeks and a birth that went way wrong. And then there are choices I made early on with Caleb who had complications (he got a head CT for example for no reason except a crappy ped) that I regret. He doesn't show signs of those things but if he did it or does in the future it will be hard for me. But the reason I'm replying is this. My mom this week told me that she was afraid that the DNA mutation (that I likely have and passed on to Andrew) was caused by an x-ray she had when pregnant with me to test position as I was breech. I told her that we'll never know and even if it were a sure thing I certainly wouldn't blame her. It's not healthy to go back and feel guilt over things that we did when we didn't know better. I wish I could go back and undo some stuff but I can't wallow in that (for long anyway) as it's not productive or helpful for my kids now.

[momtoS]

Thanks for all the replies! I have read all the replies...but right now I don't have to respond...hopefully I can come back after the little ones are in bed.

I appreciate everyones support. I am feeling a lot of sadness about this and can't express my feelings honestly in real life. I appreciate having this place to come to say what I am thinking.

Thanks

[gossamer]

I would encourage you if you can to let go of guilt. Your feelings are totally normal. Lot's of us feel the same way. You don't have to feel guilty for feeling that way.

I don't have a SN child, but I did lose my daughter at birth due to Pre-eclampsia and HELLP. They had to deliver her at 25 weeks to save my life. Talk about guilt, kill my child so I can live. But what I have learned is that feelings are not right or wrong, they just are. How you act upon or react to feelings is where you can start downa slippery slope. Don't feel bad for having feelings whether they are anger, bitterness, sorrow or guilt. Theya re valid because they are yours.
Gossamer

[MSUmama]

Originally Posted by sbgrace

I imagine personality plays into the guilt feelings (or lack of) for some people. But I also think certain things are more likely to make a mom tend toward guilt. For example, I don't feel any guilt about Andrew's mitochondrial disorder. I think things like genetic mutations and DNA mutations and stuff like that feel more out of our control perhaps..at least to me. I didn't cause a mutation in his DNA other than through my own genes. But stuff like autism and sensory issues and all make a person wonder more.

I wish I could go back and undo some stuff but I can't wallow in that (for long anyway) as it's not productive or helpful for my kids now.

I know personality plays a part in this. I am big into taking responsibility and often do so when I probably shouldn't. I don't want to be perfect but I def believe in owning up to my mistakes with my kids.

I don't know if I'd feel less guilty if dd had something that could be pinpointed to a mutation of any kind. Sensory issues and ASD have been linked to everything and nothing it seems.

[pixiekisses]

Originally Posted by ShadowLark

So for you to say (and this is how it sounded, not necessarily what you said) "oh, no biggie! He'll live in his own little world, but who cares, he'll be happy. At least he's healthy, that's all that counts, right?" makes me want to scream and cry and tear you to pieces.

I'm utterly mortified that you read that out of what I wrote. I just have to say, again, that is just not something I would ever say to anyone, nor do I mean anything remotely close to that.
It just goes to say that communication online (or irl) can be trickie. Me and my dear uses this as a tool sometimes when we are not agreeing on something, we'll go like "this is what I hear you saying now, not what you're saying, but what I'm hearing: *insert what we heard/got/understood/took/interpreted from what the other one said*". And then the other one gets too clarify and say what he/she means with other words, and explain better so that we have an agreement in the end of what we are saying. And maybe then we might not be disagreeing afterall.

Originally Posted by ShadowLark

I almost wish this were something physical. Cancer seems easier - at least with cancer, you can fight BACK! How do you fight a foe this ephemereal?

You know, I feel guilty for thinking something along the lines of that sometimes. But every now and then I'm just thinking that hey, couldn't we get something easier? Something we can fix? Something we can just take away, or fight back to, or treat, radiate, operate? Whatever really, as long as there's something we can do.


As for the guilt of pregnancy related to SN. I totally get that. I have it too. All the time. I got pre-eclampsia and HELLP, was on monitoring in the ICU and they said I wouldn't even go a week before the baby had to be delivered. And then total placenta rupture leading to an catastrophic c-section where the baby was delivered 10 min. after we noticed I was bleeding. Delivered w/o a heartbeat, she was dead, but they managed to bring her back. I feel so guilty, so much of the time, I don't know why I got pre-eclampsia and HELLP, I was not at high risk for any of it, but still. I will always wonder if I did something to cause it, to cause her being born so early (well, at week 30), and if her premature delivery had anything to do with her being so sick. We do not know anything about that. We probably will never know. And that guilt isn't easy. It's partly what keeps me from getting pregnant again, I'm terrified of doing something like that to another baby.