I was reading a special needs mothers’ facebook page today and had to catch my breath for a minute. There was a comment on there in reaction to a blog post that I felt so strongly about. It wasn’t ableist, or offensive. It didn’t use language that offends in the special needs world. It was almost the opposite, it was so in its own head and experience that the writer couldn’t have compassion or empathy for anyone else, even if they had gone through something very similar.
The commenter was responding to a post written on Two Upside Down Turtles. The original post was from a while ago, and was about coming to terms with her twin girls’ diagnoses and she was referencing that old chestnut, “Welcome to Holland”.
I need to preface this by saying I really can’t stand that poem. If you’re in the special needs community you have probably heard it. It talks about how when you have a baby you think you are going to Italy, but then somehow you end up in Holland (the land of special needs parenting) and at first you are like, where’s my pizza and pasta? But then you realise there are windmills and all is ok.
A number of people told me about this poem before Eva was born and after. I wanted to spit on them. I said to people who would listen that I hadn’t woken up in Holland, I had woken up in a Thai prison. The poem felt saccharine and overly optimistic, and it didn’t reflect anything about how I was feeling in those first months. It felt like the bandaid other people give you because they don’t know what else to do. I hated it.
I get it now. I get that change in feeling, that ability to appreciate the difference, but I will never love that poem because Eva’s differences took her away from me in the end. They killed her. So no, they aren’t just getting used to Holland.
BUT. I do understand that this poem holds truth and power for some people. It’s a balm for them. So when I read this woman’s post about how moved she was by the poem, I smiled and thought, good for you.
One of the commenters on facebook didn’t agree with me and responded like this:
I was handed a printed copy of this at the dr and I can’t stand it for this part right here👆🏻makes it sound like we’ve “lost” something…on the contrary, I’ve gained more than I could’ve ever lost! My lil girl is more amazing than I could e ever imagined and EXACTLY how God wanted her and is fearfully and wonderfully made and NOT a “loss” as this article states. Shame on this mother for saying that. I wonder how her child would feel after reading that part.. Think about it.
Initially I thought she might share my reasons for disliking the poem. Not so, it seems.
The part of the poem that this woman is referring to goes like this:
She went on to say:
sorry but a mother addressing their child as a “significant loss” Bc he or she didn’t turn out the way she thought or planned is indeed shameful to me. And then to state that the “pain” will “never ever ever go away”? I’m sorry but as a mother who completely loves my daughter unconditionally cannot imagine how her condition would be considered a “pain” . … I guess it depends on whether or not you look at your child as a burden or a blessing. I choose blessing.
I recoiled and instantly felt terrible for the woman who had written the article to begin with on Two Upside Down Turtles. I felt terrible for the total lack of compassion or empathy that was being shown here. I might be about to be shot down here, but I have noticed that the most hurtful comments, the most judgement I have felt has been from within the special needs parenting community, not from outside it. This woman has a child with Down’s Syndrome. She was coming from a place of experience, but she was applying her exprience to all special needs experiences.
I think we have a mentality that because we are all special needs parents, our experiences are all the same. But they aren’t. Our kids have a plethora of challenges and if some of those challenges mean they are in pain and will struggle with that pain their whole life, or in fact die from it, then we might not ever see these conditions as a blessing. That doesn’t mean our children aren’t loved and seen as the amazing people they are, it just means we don’t have to blindly accept their conditins and be thankful for them. How could we be thankful for something that hurts and sometimes even kills our children?
The article on Two Upside Down Turtles is about that lovely moment of connection. When you find something that you feel encapsulates your journey. It is not about rejecting the special needs diagnosis. I wondered, with a small shiver, what this commenter on facebook would make of my story. Heaven forbid she ever find the podcast!
It made me realise, though, just how important sharing these stories is. We don’t talk about them, for fear of people saying we are monsters. We keep these feelings quiet, and the result is that it continues and gets worse because we feel like we can’t talk about it. New parents feel alone in those feelings and it makes it harder. We feel trapped in a corner. Unable to share the terror and worry and anger. Sharing them doesn’t mean we are saying we still feel that way all the time, or even at all, just that we did feel whatever way we did and that it’s ok, and that we are somewhere new now. NOT HOLLAND. But somewhere new.
Don’t get me wrong. This feeling isn’t bitterness. I love Eva with all my heart. I am incredibly thankful that she was in my life. What I am not thankful for is the fact that her high needs meant she had to be hospitalised regularly. Her high needs meant she died well before she should have. I don’t feel bitter about those things, but I don’t have to feel blessed either.
I’m not trying to tell anyone how they should feel when they find out their child has a diagnosis. I can’t do that because I don’t know where they’ve come from or what experience they bring to the table. Maybe they do take to the experience instantly. Good for them! I also don’t know what their child is going to go through. Special needs encompasses so much. Some of that doesn’t affect quality of life, but much of it does. And how you react to that news is dependant on so many things.
I just want to normalise the experience somewhat, so that the new mother, who hates “Welcome to Holland” can hear other voices. Voices who didn’t see it as Italy versus Holland, but who saw themselves falling into a well. There are no windmills in that well. It’s dark. And cold. And lonely. And some of us never say we are happy we got sent there, because our children are suffering there. And feeling that way is ok too.
It’s all ok.