That old chestnut 

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:

  
It is acknowledging that grief that so many of us go through.

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. 

Eva’s special needs saw her in hospital for even the smallest cold. It was what eventually killed her. I will never see that as a blessing. She was a blessing, her health conditins were not.

13 thoughts on “That old chestnut 

    1. Oneinamillion Post author

      Thank you, Samara. That means a lot. Even now I get shakey hands sometimes pressing publish on posts like this. I know sometimes that it won’t go down well with certain people, but I think it’s important. I haven’t seen that, I’ll check it out. Thank you!

  1. jacqui dickson

    Agreed. However the Holland poem does refer to the loss of a dream…or an imagined future, not the person which I think we all have when carrying a child. I’ll never get over that loss. But yes the poem idealises disability, and any disability isn’t ideal. Keep writing. Its another realistic perspective.

  2. Tricia

    I think you’ve done a wonderful job writing this. It’s so important for people to realize that our experiences aren’t the same. The Welcome to Holland poem helped me tremendously on my journey to accepting our girls challenges. Our girls have several disorders but they don’t have chronic or life-threatening illnesses. If they did I guarantee that I would hate the Welcome to Holland poem. We all have the privilege of sharing our stories. There are always going to be people who don’t like us or celebrate what we have to say. But it’s important to say it anyway. Because for every person who doesn’t like what we say there’s another person who needs to hear what we have to say.

  3. motherofvegemiteandwonder

    Absolutely agree. My daughter is a blessing and the light of my life, but her condition is certainly not a blessing – for her or for me. She has spent her entire life struggling with a long and horrible list of medical issues that at some point will bring her life to an early end. I know there are some parents that strongly believe they wouldn’t take away their child’s condition even if they could because it is part of what makes them the child they are. I understand and respect that feeling, but I would gladly suffer giving up the beautiful little girl Zoey is, if it meant that she could live a long and healthy life.

  4. Colleen

    I hear pain and terror in that woman’s terribly judgmental response. I think anyone who lashes out like that at someone who is just sharing their truth has a whole mess of inner darkness they’re afraid to confront.

    You are doing a beautiful and brave thing in this space, sharing your story so authentically and allowing others to do the same. I heard a quote recently: “You must be brave with your life so others can be brave with theirs.” You’re truly living that.

  5. takechargewith2

    I don’t like the poem … I used to but then I learnt that my daughter wouldn’t be who she is without her illness. I wouldn’t change it – the suffering and pain, of course. But you love your child no matter what. BUT I do always feel guilty, that she could have been born without the condition. I guess people find comfort in it, but o find comfort in saying this is my normal. Nothing is “normAl” so I don’t like her being classed as different or that we are in Holland instead of Italy … What about England? New Zealand? … It’s not black and white 🙂

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