Feature in the SOFT UK newsletter

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A few weeks ago I was contacted by a representative from SOFT UK, which is a charity that provides information and support to families affected by trisomy 13 (Patau’s syndrome), trisomy 18 (Edwards’ syndrome) and related conditions. They provide support through the many stages families may find themselves in from diagnosis to bereavements to pregnancy decisions and caring for someone with these conditions.

The representative wanted to know if they could use one of my blog posts in their next newsletter. I didn’t even really need to think about it and said yes. The blog post in question was one I wrote after another mother emailed me asking for advice about what to do in her pregnancy. It rattled me because I felt as if I was talking to myself in my own pregnancy, trying to change how I felt at the time.

Today, I got sent the link to the newsletter. Here is the article, but click through to see it (and read it properly) via the SOFT UK website.

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The publication of this piece felt particularly poignant right now. I’m part of a number of groups online related to special needs and I follow a number of other bloggers. I recently had to take myself off a list of followers when a mother commented that sure there were tragedies happening all over the world, but the bigger tragedy was how many mothers have their pregnancies terminated after finding out their baby has special needs. She’s not wrong. It is a tragedy that mothers do not feel up to the task of raising children with special needs. But the fault and cause of this tragedy should not be placed on the shoulders of these mothers as if they are the criminals. It should be placed on the world that makes that path in life seem far too hard to contemplate.

The lack of empathy and compassion in that comment made my stomach fall. It’s very easy as someone who has a special needs child, or in my case who had one, to throw stones at other parents who make decisions we did not, or could not. In fact I sometimes think I have received more judgement and vitriol from within the special needs community as from outside it. There’s this belief that if we toughed it out and survived, then you have to too. A sort of hazing ritual for the special needs world. But we shouldn’t be forcing others to endure, just because we did, we should be working to make it easier for every new mother that comes along. This road is bumpy enough without our fellow special needs parents skewering us for not doing it right.

I know that for me, if I had found out about my baby being blind and deaf with heart and brain abnormalities in those first 15 weeks, my own decision would have been to terminate. It hurts to type that out now, because it’s not the decision I would make now, but I am a different person, and the decisions I make now are forever altered.

I try not to feel too guilty about this, or judge myself as I was, because I could not know then what I know now and how was I supposed to? I try not to judge myself, because I wouldn’t judge someone in my shoes, just like I didn’t judge the woman who emailed me. There was no right choice. Whatever choice she made, or I made, is the right one.

I try not to feel badly about my own change in thinking, because as much as I wish we lived in a world where having a child with special needs was no big deal, and didn’t turn your whole life upside down (in sometimes beautiful, but often harrowing ways), we don’t live in that world. We live in a world where the knowledge that your child is going to be born with extra medical, physical or mental needs is terrifying, and often should be, because you know, as I did, that while there are the bones of support out there, you will be going on this journey alone. You and your child.

You know that you will be fighting everyday for your child’s medical, educational and physical needs. You know you will lose friends and relationships. You know you will potentially never work again and will live hand to mouth in your efforts to support your child and their happiness. You know you will watch your child struggle and sometime be in pain because of their condition. You will do it, and there will be beauty and love and life there too, but it will be hard.

I had to unfollow that blogger because she didn’t get it. She sat on top of her ivory tower of knowing better than everyone else and proclaimed that her way was the only way. Not only that, but she blamed and condemned other mothers for making these impossible decisions, instead of pointing her anger at the system that makes our lives so much harder than it should be. She railed against the mothers, instead of putting the blame where it belongs, on a society that values humanity and special needs so little that having a special needs baby terminated makes more sense to many than facing the alternative and all its uncertainty and worry.

The bloggers experiences are important.  Her words have weight, and they are worth thinking about and considering. She has a point of view to add to this discussion that is imbued with the love of having a child with special needs herself.  But it’s vital to remember that they are not the only words to say on this topic, and her experience is not the only experience.

 

 

One thought on “Feature in the SOFT UK newsletter

  1. Maria Grace

    I watched a TED talk by Toni Mac where the topic itself was different, but the sentiment very much the same: that it’s important to understand why things happen, in order to support people who do those things, rather than just proclaiming that something is bad from the point of view of a person who doesn’t understand, or doesn’t want to understand.

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