Saturday, April 26, 2014

Why shouldn't it happen to us?

I was a relatively healthy 22 year old when I fell pregnant with Lyla, I remember being ecstatic (and maybe a tad nervous) when I saw those 2 lines on that test.  I was in a hostel bathroom in Dublin and Dan was downstairs in the pub, and after waiting all afternoon to feel the need to pee, I texted Dan (romantic I know) that the test was positive and he replied with "Yay, I knew it".  

I avoided all the risky food and drinks while pregnant, I read all the books and attended all my midwife appointments.  I loved being pregnant, I was excited about the thought of giving birth, and I was looking forward to raising a beautiful and healthy child in a very natural and gentle way.  But I never expected to have a child with a severe disability, I had not prepared myself for this, I did not read about this, because this wasn't something that happened to people like me.  It was hard just as much as it was heartbreaking.  I has this picture in my head of my daughter running around with her cousins, who were just a few months old than her, going to school, telling me stories, playing at the park, making friends - all those things children do.  How could she do this when everyone was telling us she would live in a vegetative state and preparing us for her death?  Not only that, but no one actually knew what was wrong with Lyla, so how do they know her future when they don't even know anything about her condition? 

For the first few months of Lyla's life, whenever we had an appointment with her neurologist, geneticist or metabolic specialist I had prepared myself; that day we would finally get a diagnosis for Lyla.  I mean, how hard can it really be?  How naive.  Every appointment we were told the same thing we had from the beginning,'we don't know', and every time I left feeling deflated and frustrated...  There were a few possibles from early on though, Polymicrogyria, Schwartz-Jampel, Syalidosis, but Lyla never had all of right signs, or she had the wrong patterns.  It was never enough for a diagnosis.  After a while I no longer went to an appointment with that hope for a diagnosis.

Lyla is 2 and a half now and she still has no diagnosis.  My best friend is google, I google every condition and every medical word I see in Lyla's notes and reports.  I google every condition I read about, every syndrome I read of other children having and I try to connect the dots - Lyla has this symptom and this one too; I'm sure she has every condition out there thanks to Dr Google.  I need to know, I need to do all I can and I need to help her, I am her mother, but there is nothing I can do, I can't fix her, I don't even know what her future holds.  But I know it does not involve walking, being an independent woman, or getting married or having children... I have a severely disabled baby who will forever live in a child like state, who will be dependent on me for the remainder of her life, a life that will more than likely not be a long one.  That doesn't make me a horrible mother, I am being realistic, which may be hard for most to understand, but not for me and not for the people in similar situations.  I do not want to live with false hope and then grief, nor do I want to spend Lyla's life wishing for something better or thinking 'why me?', because I have something very special.  I have a daughter who has brought me so much happiness.  A daughter who, despite everything she has and will continue to go through, is gorgeous, happy, smart, cheeky, feisty and totes hilar.  A daughter who has taught me how to be a caring, sympathetic and more patient person.  A daughter who has inspired me to help other people, to share her story, to advocate for and educate others about special needs.  A daughter who has given me goals and ambitions.  A daughter who has shown me this place very few ever get the privilege of experiencing.  A daughter who has made me appreciate all those tiny little things most don't notice, and to live for every minute and never take anything for granted because it can be taken away in a second.  And I have a daughter who has shown me what true love is, she has reconfirmed why I wanted to be a mother.  It is about what you learn on the journey. 

We now know a diagnosis will not fix Lyla, but a diagnosis will help us.  Those dots will finally be connected, we will have a better understanding of what to expect for Lyla's future, and we will know what our chances are of having other children affected by the same condition.  Not everyone understands that risk as quite often I am asked when we are having more children... Caring for one severely disabled child is very different to possibly caring for two severely disabled children, and then caring for two severely disabled grown adults is very different from caring for one severely disabled child.  That's not a chance I am willing to take at the moment. 

I am the mother, who even though did everything properly, had a daughter with a severe disability.  But why shouldn't it be me?  Maybe I was prepared to have a disabled child?  I always had this weird feeling that it would be me.  I have the support, I have the love and I have the strength that was needed to raise a child with extra needs.  And even though I see my nieces and nephew doing the things Lyla should also be doing, I am no longer heartbroken, I am in total awe of the child we created and she is amazing just the way she is. 

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