Tuesday 5th July 2016 – Genetic counselling for me at Lister.
Emotional time and tough for me over the past couple of days – however kept this to myself. Cried all the way there. I know it’s not my fault – but I had him and it’s only carried through me – so hard not to feel a twinge of it.
A long chat with someone else about our last 6 months – more tears – I asked when these would stop!
I found out more about how it all works, the dna and chances of being a carrier or mutated. What I didn’t know was even if my blood says I’m not a carrier – my eggs may still be. So no more kids naturally for us unless we pay £10k. What a blow.
After an hour I went along for blood tests – after another hour waiting reading my kindle I had bloods done.
Cried my way home.
Housework to do now as the kids are at their grandparents.
What I can’t do is talk about it, the detail, the meeting. I can’t relive it, even to Matt. I find it so hard to recall an hour of talking again about our current life.
A few days later….
A play date – garden time and usually my boy is fine. Children climbing within a playhouse up to the first floor – he can’t do it and usually it doesn’t bother him, but he turned to me and his little face looked sad as if to say ‘why can’t I jump up there mummy?’. I found a corner and cried quietly.
2 days since genetic counselling – not been great. I can’t get over how this happened. Whose fault it is. Why me? Why my boy? Had lots of crying and cannot control my emotions. I was asked how I was – I cried. My shell was broken. I cannot act happy all the time – and that’s what it feels like, an act. My whole life feels like an act – when will I actually be happy again. I’m arguing with Matt – he’s done nothing wrong except love me
Early August 2016 – Genetic results are in – I carry DMD – again alone with the two kids when I get the telephone call. I hold it in, go upstairs and call Matt, leave a message for him to call back in babbled sounds.
He makes his way home from work and I get through hosting a play date for morning and lunch without tears.
I feel like I’ve gone back to zero, I feel to blame – irrational I know as its all genetic – but he’s my boy and I gave birth to him.
Thursday 15th September – Genetics counselling (this time with Matt)
Really to talk about having another child, what it would cost, procedures ….chance to ask questions.
What amazes me is that I never thought to expand my family I would have to pay, enhance the pressure on us and really change my way of thinking.
Why? You may ask. Well, we wanted kids & to give them a loving family, including siblings through their whole lives. Now, we cannot guarantee that for Phoebe so we want to give her that.
It scares me.
What if something else is wrong with our next child? I don’t feel lucky at all, maybe I’m just going to have bad luck forever.
It’s hard, very hard.
After the last counselling..
I go shopping, I thought it would take my mind off it all. Not the best idea! I wandered around looking a clothes not able to decide on anything. Why bother? I’m just not worth it. It’s in me so why bother.
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