The Story of Great Ormond Street. The Genetics appointment. 

It’s the evening after our genetics appointment. I’m sat in the bedroom kiddo and I are staying in with the lights out, listening to the gentle purrs of sleep coming from the bed next to me. And I’m a mess.

Today’s appointment has thrown me into complete and utter turmoil. And I have no idea why. As suspected kiddo will be undergoing genetic testing. As totally unsuspected, there are conditions the consultant would like to rule out and test for. In particular, Smith Magenis Syndrome. Now I won’t go into the particulars of how the Syndrome presents here, I’ll let you have the fun of looking that one up. But essentially, it’s not that different to the path we are already taking. Our path down autism lane. There’s no cure and very little we can do to manage the behaviour that we aren’t already doing. So why is my mind such a storm of emotional chaos?

Lying on the bed as kiddo fell asleep I watched his eyes gently flutter closed. Still filled with the same determination I always have been to find out what is wrong and how we can help him. And now we are one step closer along this journey. So why am I so upset? 

Perhaps you think I’m being too pragmatic. And I possibly am. But I’ve always been the same. If I’m upset i just have to know why. So I can deal with it and move on. Comes from my early treatment days for depression in my late teens I guess. I never dealt with any feelings so I remained stunted in the same emotional void for three years. Now I’m the opposite.

I wasn’t planning on writing tonight. I’m actually writing because I thought it might help me get to the bottom of the nauseating waves I currently feel in my stomach. And as I write, two things have become clear.

1. We’ve been introduced to a new Syndrome. That’s a game changer. And my immediate thought was, “but what about autism? That’s what kiddo has. That’s what we are dealing with as a family. I even write a blog on it!”. So what do I do? I immediately google the following:

‘Can SMS and autism co exist?” The answer? Yes. I felt a surge of relief. Thank god! We are still who I thought we have been for the last three years!! And there you have it. It’s taken me so long to come to terms with our identity as an autism family, that I just couldn’t face the idea of losing it and starting all over again. Plus, you know, a re-brand for the blog would have been a pain in the ass.

2. The consultant asked us if we wanted more children today. Hubby and I have always been very open about it but we are in a place where we just don’t know right now. “Well you might want to”, said the consultant, “because you’ll need someone around to look after kiddo when you’re gone”.

He’s not the first person to say this to me. And I HATE that sentence. Here’s why. (The following are my views, and mine only. I do not judge anyone else’s decisions because I haven’t walked a day in your shoes, I haven’t dreamt your fears. This is my viewpoint and no judgement on anyone else’s).

I will not be pressured to go through a pregnancy I’m dreading with the sole purpose of breeding a carer for my child. If I have another child it will be because hubby and I want to bring a child into this world made from pure love and joy. It will be because we want the child for who they are. No other reason. What if kiddo hates them? What if (God forbid) they die before we do? Hearing this sentence today was like taking a dagger to the heart because I thought I had made peace with my opinion on this matter. And actually, I have. What I haven’t made peace with is the fear of what will happen to kiddo when I’m gone. And that’s an entirely different issue that has been brought to the surface today.

So yes. I’d say it’s pretty justified that I lie here now feeling a tad emotionally confused. Thanks for helping me work through that blog.

Oh, and the kiddo is hyper mobile. Up yours NHS! I was right.

Thanks for reading,

Danielle 

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