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I have a lot of guilt, to this day, about Danny's challenges. To put it basically, I blame myself. I know it's pointless to even associate blame - it doesn't help anyone - but every time he struggles, every time we discuss new therapy, every time we come to learn about another something that is harder for him than it should be, I feel this punch in my gut that I caused this.
I mean, he was perfectly normal until I came down with the disease that did so much damage.
I can come to terms with what is, and what was, for the most part. I totally accept and embrace his deafness, I know his challenges make him all the more special, and he is such a happy and loving little boy. But this hurdle of guilt, of blaming myself, I can't get away from.
Oh no!!! I know that I can tell you not to blame yourself 'til I'm hoarse (or, since it's online, 'til my fingers are worn to the bone), but I cannot think of a single way in which this is your fault. You didn't seek out the disease, rub yourself down with it, then hope and pray that your baby would be ill. I'm sure that you took every precaution that every other woman does in pregnancy. Unfortunately, the luck of the draw chose you to get sick and pass it on. Think about all the harmless little bugs we all got during pregnancy, in spite of trying to stay healthy. I know that every DDC is filled with moms panicking about being exposed to diseases, bacteria, viruses, chemicals, etc. Again, you just got the luck of the draw. I hope that one day, you don't think that this is your fault.
That said, I know that you're not alone. Most of Milo's problems are genetic, but some are most likely related to other circumstances around his birth, and from damage since then. Had I yelled at someone while I was pregnant, KNOWING that something was already going wrong, had I switched clinics, had I demanded that a doc see me, had I changed this or that, then maybe things would be different. I think about it A LOT. Even the genetic part is most likely passed on from the mother. (His umbrella syndrome sometimes stems from the mother's chromosome 7 copying itself twice and delting the father's.) If he has CF (oddly also on chromosome 7), then it's a direct result of DH's and my genes. I'm not saying that ANY of this is anything to feel guilty about. If someone else told me any of it, I'd reassure them and I would KNOW that it's not their fault. And logically, I know that I did everything that I could. But every time I look at him in the hospital, coming out from surgery, undergoing another scary procedure, I feel guilty.
I know that our kids don't have the same thing going on, but I DO turn it over and over in my head a lot. I hope that you're able to let go of the guilt someday. In the meantime, at least know that you're a WONDERFUL mommy who always has and always will want the best for and do anything for her kids. I think that everyone else knows that.
Last edited by iamkc; April 29th, 2009 at 01:23 PM.
Reason: left something out
I feel that way alot right now. I found out today that there may be a familial link to Joey's disease. I am going through the ups and downs of feeling this is my fault, my genes that did this to Joey (my mom has a possible LCH skin lesion) and also knowing I did not KNOW anything then. I did not ask for this.
The fact is we all do everythign we can to stay healthy, be healthy, and have healthy kids. But sometimes our plans aren't the same as someone elses, and our kids are going to be special, stronger (in some ways), and fighters. its nothing we have done on purpose, its not like we asked for it. it happened and we face it each day.
Kel, you know better than that! That's like me blaming myself for having cancer b/c my treatments may have caused Ava's defects. (although I admit that I have felt this way a couple times during really bad times). If I were to take myself out of the situation and try to look at the bigger picture, I know it's not my fault.
You know and I know (and everyone else knows) that you would happily take Danny's problems onto yourself if you could. We also know that you would NEVER have put Danny and yourself at risk if there was ANY humanly way possible to avoid it.
((Hugs)) Kel. You are an incredible Mother. You are also an amazing friend. You've helped me more times than I could count, while you've shouldered your own problems. And you've done it all with a quiet grace that inspires me.
I know I can tell you not to blame yourself and you still will, but I hope you can let it go, you can not control your getting sick and we really do not know what causes certain defects.
I asked myself over and over what could have caused Carter's syndrome, and I have come to peace that I know it was nothing I did, I also know it was nothing you did. It still infuriates me that people are careless with their health and pregnancies. I have ZERO tolerance for that, but that is not you, in any way.