When my late daughter was born I contracted MRSA and was so very ill. I was trapped in hospital in isolation not allowed to see my children including my precious newborn.
I blamed myself for such a long time as I knew how important those first days of bonding were.
When Livvy’s regression started I was told so many things including “I have to accept that not all kids are the same and that I should be grateful for two bright kids”. “Are you lonely and want attention” “you are neurotic” to the worst one from a doctor “I think you want there to be something wrong with your child”.
I was broken I had this child who had gone from a pleasant baby, toddler into a screaming child
who wouldn’t even look at you.
The doctors eventually diagnosed global learning but I wasn’t convinced they just wouldn’t listen when I told them she used to walk, talk and engage with you. They just smiled and brushed over the subject.
I honestly thought I was going mad. Yes I was exhausted I had a 5, 4 and 2 year old to care for. I started to let the words of the doctors convince me I was wrong. Maybe I had missed the signs, I mean I did have my hands full.
I had lost my baby girl into a world that she wouldn’t let me access I was devastated. Maybe it was my fault. If only I hadn’t got ill. I hated myself and was sure I was the worst mom in the world.
I sat at toddlers groups watching Livvy scream when other children came close. My heart was in pieces.
In the end I retreated, my own world was safer.
Then Livvy’s seizures started. The first one scared me so much I nearly dropped her. Febrile convulsion I was told, twenty more later the doctors were confused.
The same doctor who had accused me of wanting to believe my child was ill was now informing me that I had a very poorly child and was looking worried.
Was this my fault again?
Life got crazy, nobody had any answers until a community paediatrician handed us the words Rett Syndrome. A week later the neurologist confirmed it.
I didn’t want this diagnoses but the more I read into it I realised i wasn’t to blame.
I couldn’t have caused it.
Something inside of me changed right then as I read the research into the condition.
“Baby girls are born “normal” but begin to lose acquired skills between the ages of 1-3 years old. ”
See I wasn’t wrong.
This gave me so much strength. I wasn’t a bad parent, I hadn’t let her down.
It wasn’t my fault,
This realisation gave me the courage to break the chain of lies that were in my head.
I was determined to do as I had been. Being the best mom I could to my now four beautiful girls. I armed myself with knowledge to quieten those who shared their ignorance with me and believe me many still did. I don’t believe it was with malicious intent but my goodness some people do need to think before they speak.
The darkness began to lift and I realised that it had been the fear that her condition was my fault that was slowly eating me up inside robbing me of my joy.
It’s not easy when you realise your child is disabled. You question everything you did. I ate healthily when pregnant. Didn’t drink or smoke.
Yet somehow the comments from people and professionals had cast doubt in my mind.
Was it my fault that my daughter was disabled?
No it blooming was not.
It was one of those things in life that just happens it was caused by a single gene mutation that leads to underproduction of an important brain protein.
I couldn’t be responsible for that.
This knowledge set me free and the fear dispersed.
I was then able to live life for the gift it was.
Livvy emerged slowly from her own world and her mischievous spirit started to show.
My other daughters just grew and bloomed.
Life was good.
Then in 2008 we lost my beautiful girl.
As the pain tore into my soul the words “it’s your fault ” returned to mind. “You should have seen, you should have known.”
Thankfully, I can’t believe I’m writing this but thankfully the inquest told me otherwise. Livvy had lost her battle to a rare virus and the complications of Rett Syndrome.
There was nothing I or anyone could have done.
One thing I have learned this last few years is that even with the truth in their faces some people will believe what they want to believe.
Maybe it’s ignorance maybe at times it is spite.
I can only be responsible for my own mind and my own thoughts.
I was blessed to be Livvy’s mom and nothing or no one will ever take that from me.
I honestly believe the whole process of the diagnosing of children’s disabilities need to be looked at.
Doctors, health professionals need to listen closer to parents. We may not have the medical degree but we do know our children.
If doctors had listened closer to me when Livvy first went into her regression her diagnoses would have come sooner. But also I personally wouldn’t have had to face the internal pain believing it was my fault.
I’m sharing this today after reading my friends blog over at Autism and love. Although our journeys are very different again I see how easy you can be left believing your child’s disability is your fault.
The time up to Olivia’s diagnoses was so hard. Hearing words like “naughty child” or “attention seeking” leaves you feeling so very lost.
Health professionals need to be more aware of the impact that statements like this leave on a parent . To be aware of what they must be feeling. No one plans to walk this pathway so more support is so needed.
Finding out your child has a disability is so hard. You have to let go of many dreams you had for child’s future. Let go of the life you used to have.
But with the right help, support and friendship your life can and will be a good one.
My life is so different because I got to be Olivia’s mom and for that I am truly grateful.