Tuesday, 3 May 2016

Struggles after diagnosis.

So in my head I have composed this several times. I however am one who can do that, create amazing works in my head but it never really transfers to paper, or screen that well.
But I also forget where I am going with things, go off on tangents and just all around talk too much... Which is why i usually vlog rather than blog. (I edit! lol)
So here I am, trying to not be utterly crap at this.

Edith diagnosis has thrown me.

Not because its awful, not because it changes her or how much I love her, it does not but because I spent so long reading up on autism.
I knew what might help, what had worked for others!  I knew what things I wanted to try, how to do them, what may happen, what help there was... All the way down to it being known! There is so much help and support for autism! Its amazing when you think about it. Hard too obviously but there is so much there, if you look. Locally there is an amazing group near me.
For a chromosomal deletion? Nothing. I don't even know if its known! How many others have it? Is she one of the first to be diagnosed with this? The other 2P deletions seem quite similar, so will she be? I need to read more but honestly, I'm scared. I don't know if want to know.
Then the whole differences, two children could have the same deletion but be completely different.

I did learn one thing! she is a SWAN! Syndrome Without A Name! Such a beautiful image and apparently many parents will have a swan tattoo or jewellery or scarf etc. Symbols of their love for their amazing little swan. And if its named they get to be an graduate swan! A friend sent me a link to a lovely article or blog... Not sure but ill pop the link in below if i can find it.

I have so much new stuff to learn. So much I don't know. And its scary.
What if i get all caught up in some of the more heartbreaking or worrisome stuff and she ends up being fine. Not because thats bad, that'd be great! But because I'll have wasted all this energy on being a basket case. Then I'm scared to have hope, in the way of it possibly being a delusion. Can I stand to get my hopes up, let my heart be full and optimistic? When it could so easily be crushed? Am I deluding myself in thinking she's come so far that surely she can't end up being mentally 9-12 or whatever? She will be fine right?

Then I think... How? How can this perfect, beautiful, wonderful and amazing little girl be
chromosomal abnormal? 'Wrong' on a genetic level? I just can't see it. I see the most amazing little girl named Edith that I've ever know.
This beautiful little girl would have been a discarded embryo if we'd done IVF. How many little Ediths have been tossed because they show abnormalities when screened?
And at the same time I completely see why people would! If you have ever done IVF you know how very hard it is. How much it costs and not just monetarily. You want the best possible chance so you will do whatever it takes, so of course you'd agree with the Drs to discard any imperfect blasts. But an imperfect blast turned into my amazing daughter! Though she was not an IVF baby, she was conceived naturally. An amazing surprise. I have undergone 3 rounds of IVF but as a surrogate. So I don't truly get the heartbreak of infertility and all that. Which is why I don't judge anyone else for the choices they made. I may well have made them too. Which is probably what leaves me struggling.

I do know that no matter what she will be loved. By me, she will be loved fully and completely every second of everyday of forever. Nothing can change that.
But will she be happy? Will I still be able to make her whole face light up? Her heart sing? Will she want to get married and have children? Will she want to be a successful business woman? Will I have ro explain to my then 20 year old daughter that she can't? She isn't safe rot have a child? That she'd not be allowed? Because if she is 9 mentally she cant! And I will be the wicked witch who destroys her dreams because at 9 they think they are grown up. She will focus on her real age and not what she's thought to be. And maybe she will be right? Who am I to decide how she is really?
Id help if she wanted a child! If I could. If it was sensible and possible but what if its not? And I know it but she does not? Do I become the destroyer of dreams when she truly won't understand.
And i know this is so far off and may never be an issue so why am I thinking about it? Why am i allowing myself to get upset? I truly do not know. I just know that I can't not. I want to know everything now so I know exactly what to do. Exactly what will help.
Be perfect! But I cannot, and that sucks.

1 comment:

  1. I had a really long comment typed up, and realized it made me sound quite insane, so I deleted. You however are experiencing everything fine and normal with hearing news like this.
    Edith is beautiful and amazing, as you know, and will continue to be so.