Thursday, February 25, 2010

I deal, you deal—we just might not deal in the same way

I am haunted by a blog post I did a couple of weeks ago. In it, I talked about grieving about what had happened to my son, Max, who had a stroke at birth that resulted in cerebral palsy. My words were, exactly, "Seven years after Max's birth, I still mourn the loss of the child I expected, even though I love and adore the child that he is."

I ended up engaged in an e-mail rally with another mom of a child with special needs, who could not, she said, "understand" how someone could mourn or grieve their child. She herself, she said, had never once grieved over her child. She went on to make it clear that there is no right or wrong here—but still, that didn't feel like her real message. Her underlying message seemed to be, "I did not mourn. Why did you?"

Stuff like this unnerves me because, really, every one of us has dealt in our own way with what happened to our kids, and continues to deal. We do the best we can.

Hearing someone say "I just don't understand"—even if they really don't get it—is just not something I need to hear.

What's not to understand? 

My feelings?

You may not agree, but please don't tell me it is past your comprehension how a mom could be despondent over what happened to her child. 

Ellen blogs daily at To The Max


  1. Amen, sister! Absolutely. If there's one thing I've learned, it's that-----we all react differently and feel differently about our situations, and it's not our place to judge or criticize the way anyone else handles things in their own life.

  2. I agree completely with you. I think it is so important that we are all allowed to be with our children in our own way—be they special needs or not. All of our feelings are valid.

  3. There's only one thing to say about this: oy vey. And there's only one way to think about this sort of person: she's not one of my peeps.
    You are, beautiful Ellen.

  4. Everyone deals differently. I ::eye-roll:: those that claim they 100% accept their childs autism, yet advocate how wonderful it is... Are they trying to talk me into it... or themselves.
    Yes, I mourn the fact my youngest will probably never be independant. No, I don't find that lack of independance "ok". But I don't play the blame game. I don't try to make it more or less than it is. We simply live with autism, not for autism... but it doesn't mean I have to like autism everyday.

  5. Ellen - I read your post and hers. I so wanted to post a comment on hers but had to just let it be. I didn't understand her post or the comments of her followers. I "don't get" why she had to tell you that "she didn't get it". What was the point except to be condescending?
    I totally get YOU! And totally got your post.

  6. Oh Ellen, I'm so sorry.
    I thought that you went out on a limb to share something deeply personal-- something that struck a chord with a lot of people-- and it's a shame that someone felt that you don't "get" being a parent of a child with special needs simply because you have different feelings from them.
    I follow blogs written by parents of children with special needs that run the gamut of emotion-- from anger to grief to joy-- and I think one of the great things about reading these blogs is that they demonstrate that just like parents of typical children we all have unique perspectives when it comes to our emotional responses, parenting, and life in general. There's no instruction manual to parenting ANY child, despite the thousands of books (many of them with conflicting advice) that profess to be such.
    I don't grieve now about Connor having special needs, though I did when we first found out during my pregnancy that he would not be a "typical" child. But you know what? I can empathize with your feelings even though I don't share them. And I think that's what really upsets me about this; that someone was unable to understand why you might be grieving and felt it necessary to share that with you.
    We're all entitled to our own opinions, but that doesn't mean we need to be insensitive about sharing them.

  7. Wow, these comments were TOTALLY cathartic. Thanks, all.

  8. I love what you had to say. I needed to hear those words. Thanks!

  9. I've been thinking a lot about the grieving process as it relates to being a parent of a special needs child. Many people are familiar with the stages of grief after someone you love dies: denial, guilt, anger, depression, acceptance...I think these same stages occur as a special needs parent, except that since parenting your child is not a one time event but an on-going process you hit these stages multiple times and it is easier to get "stuck" in one of them. I tend to get stuck in guilt and anger. Everyone has a different story. I think that's the only thing we should try to understand.