Graffiti on His Precious Book

2 comments
additional needs, down syndrome, down's syndrome, equality, family, inclusion, love, pregnancy, special needs

It’s just a few scribbles but the words and the handwriting from Seb’s little red book are indelibly stamped in my memory. I stared at them so many times and for so long. Graffiti on his precious notes. Holding my breath so as not to explode into hysterical tears in the maternity ward, making my stomach churn all the more. I was offered my own room, but I didn’t WANT my own room – to be different, to feel different, to be excluded, to feel like this was bad news and people were feeling sorry for me. They were feelings I was already struggling with.

The observations were written in his book first and the blood test results a week later……although I could have written it myself as “Google confirmed that baby Sebastian has Down’s syndrome”……

Fixated by those words, just 24 hours after his birth, all I could see in my baby was a syndrome.

I lived in hope that the consultant was totally off piste but the moment I knew was the moment I dared to look at the baby opposite. His features were so “full” and his body long. My heart shattered into a million pieces and I blurted out to the new mother in the bed what we were dealing with. She was really kind. I will always remember her gentle kindness. She told me she was 42, he was her fourth child, and she had been given a one in four chance that her baby would have Down’s syndrome.

She told me Seb was beautiful.

Instead of feeling uplifted by her words, as I do today, I felt so cheated, this was supposed to happen to her, not me. Our boys born the same day, me with a one in 795 chance, her with a one in 4.

But of course, it happened to me and I had the most to gain. She clearly was already a person who accepted we are all equal and could see past labels. She had continued with her pregnancy knowing she had a 25% chance and knowing she would love her baby no matter what.

I don’t really go along with the line “all things happen for a reason”, things happen because they happen. I have days when it surprises me I have a child with Down’s syndrome – not just because it’s something I didn’t plan or imagine in a million years, but because I don’t see Seb as “Down’s syndrome”.

Anymore.

He is Seb. Seb who has taught me so much. About priorities and life. About pride and pain. This will sound odd to anyone here who hasn’t experienced it, but for those of you who have I am sure you will understand, I hate the thought of me never having experienced this journey, of being the person I was before. Seeing the world as I used to see it. Ignorant. Not feeling the extreme emotions that come with being a parent of a child with a learning difficulty.

Good and bad.

HAPPY WORLD DOWN SYNDROME DAY. Especially to the new parents just starting out xx

‪#‎WDSD‬ ‪#‎WDSD15‬ ‪#‎WDSD2015‬

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2 thoughts on “Graffiti on His Precious Book”

  1. Kaye Martin says:

    I have just found your blog & am devouring every word! Your honest reflections have moved me to tears & made me feel so ‘normal’. My daughter is 18 months old now & our first child. My early days of motherhood were spent in a fog of confusion, pain & isolation. A whole host of professionals prodded & poked our precious newborn & kept bleating on about ‘dysmorphic features’, ‘syndromic presentation’ etc. I remember feeling hugely resentful…towards my daughter for being different, for failing all of the tests that she was put through & towards the other mums on the ward who were all (seemingly) enjoying the straightforward, blissful ‘new parent’ experiences that I so badly wanted (& felt I deserved!). Instead our reality was confusing, clinical & bleak. So many professionals wrote things (gah, the painful cycle of devouring medical notes, googling then spiralling into terror!) & said things with no regard for our feelings. Simple things like scribbles in her red book broke my heart. I too felt desperate to get pregnant again quickly to replace what I perceived as a negative experience with a ‘normal’ one. However 18 months down the line, my daughter, who is the most feisty, cheeky, determined & beautiful girl fills my heart with such joy & love, I’m not sure there’s room in there for another one!! We still don’t have an official diagnosis (other than a possible chromosome deletion) but this matters so much less to us now. We see her for who she is. We love her for who she is. We celebrate all the wonderful things she CAN do & focus less on what we’re told she SHOULD be doing. Thank you for sharing your experiences so honestly & for voicing your innermost thoughts-from the heart bursting euphoria that makes you feel so utterly blessed to be your child’s parent, to the downright terrifying dark hole that only those people who have been to the depths of despair will truly understand. I look forward to reading more & learning from you & your family’s example!

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    • What a really beautiful comment, thank you for taking the time and trouble to write it and share your own story too. I so appreciate such lovely feedback, there are days when i wonder if what i am writing is really that relevant of interesting to anyone but to connect with just one person means so much. Thank you again and warm wishes to you and your family.

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