What is World Down Syndrome Day?
March 21st is the official awareness day for people with Down Syndrome, it was recognised by the United Nations in 2011.
Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, it exists in all regions across the globe. It is the extra chromosome of number 21 that gives some common traits in people with Down syndrome, clinically known as Trisomy 21. Hence, World Down Syndrome Day was chosen to be on 21/03 of each year (3 chromosomes of number 21) cool yeah?
So what is Down syndrome well here is the definition in a dictionary
Down’s syndrome/daʊnz/noununpunctuated: Down syndrome
- a congenital disorder arising from a chromosome defect, causing intellectual impairment and physical abnormalities including short stature and a broad facial profile. It arises from a defect involving chromosome 21, usually an extra copy (trisomy-21).
This is such a generalisation that it should also say “they love music, are so loving and always happy” well let me blow some of the myths. Fran does love music, she is 12yrs, so she loves Little Mix, Ariana Grande and most pop music with Capital being her favourite radio station. This is no different to any pre teen, when Fran was younger she liked music and nursery rhymes like her peers. She is loving, we all have a loving relationship, like she has with her Dad, brother, cousins, aunties, uncles, grandparents and friends, its not extraordinary its ORDINARY! She is also moody, stroppy, defiant, cheeky and says fuck! Just like anyone else her age. If you are interested for more myth busters, follow this link from the BBC
Oh and its not only older women who have babies with Down syndrome as 80% are born to mothers under 35yrs, just saying, as I did have Fran at 40yrs ….. wowzer!
Fran was born in Hong Kong, my husband and I lived and work there at the time. I was due for a caesarian section on a Friday, Fran was breach; but because maternity leave was only 10 weeks (WTF) I finished work on the previous Friday, but had Fran by emergency caesarean on the Thursday ( I had contractions and my water broke). Unfortunately Dave could not be present for the birth because it was an emergency, I was traumatised to be honest. I was given a spinal block and went into a triggered situation from a previous event that had happened to me and all I wanted was Dave. The bed side manner of the staff was rubbish, but this may have been due to language barriers (I hope). So my wrists were strapped down and a screen was put in front of my face, so I couldn’t see anything or move! By this time I was shouting “get my f*#%ing husband” he was all I wanted and needed, but no they just gave me more sedatives, which did not work LOL! I kept up the sweary rants the entire time.
It was a weird having a C section, like someone is fumbling around in your womb. You have this sensation but no actual feeling. Of course I could not understand what was being said by the nursing team as I never bothered to learn Cantonese (something I regret). Eventually I heard my baby cry, then the Dr came to show me that she was a girl by flashing her bits in front of my face! I was still strapped down. Fran was taken away to intensive care unit, unbeknown to me, but Dave was with her, again all unbeknown to me. I went to the recovery room for a few hours and was able to speak to Dave by phone. He kept telling me how beautiful our baby was and he loved her so much, then he would cry, but I just thought he was overwhelmed.
Later I was transferred to the maternity ward without my baby! I felt like I had been in hospital just to have my womb removed. Dave was allowed to visit me and through his tears he hugged me and told me how he loved our baby girl. Then he told me she had Down Syndrome and pneumonia and a hole in the heart. But he didn’t give a shit about any of it, he just knew he loved this child. I was devastated, with this overbearing feel of rejection for this abnormal baby (which I had only seen once). I knew at that moment I would not be able to love her because she was not normal. When Dave returned to the NICU and I was alone, I sobbed uncontrollably, it was like a form of grief, I felt like a failure. I kept having flash backs to the special school in the park where I grew up and how we called those kids MONGIES and SPASTICS (this was the 1970’s). I was a mess. But I wanted to see my baby and the nurses would not allow it as Fran was in an a critical condition ( I later discovered this was bullshit and just how babies with Down syndrome are treated by Hong Kong medical profession). Dave told the consultant that if they did not take Francesca to see me he would wheel us both out of the hospital.
I had given birth at 8.31am and it was 5.30pm when I eventually held here and fell deeply and madly in love with our beautiful baby girl. Dave was told in the public lift by the consultant that his baby had Down syndrome but like I said he didn’t give a shit. He never once faltered and he gave me the strength to recover from this trauma and be a mum. While I read books about Down syndrome, he was a father, first and foremost. He is still the same today, he has brought Fran up as we did not want to leave her with child minders in Hong Kong and I went back to work.
A pre-teen with Down syndrome
We moved back to the UK 4 years later and now our baby is a pre teen with raging hormones and a very strong personality. She goes to a special school as Frans speech and communication is not great ( except when she wants something then she can communicate quite clearly LOL). Life has been tough at times, but harder for Fran than us, as she wants to do things but sometimes her disability holds her back either physically or mentally. She is living in society that still is not very accepting of what it does not understand. I was once fearful of disabled people as I had never encountered any until I had Fran. We now live in a disabled world fighting every inch for more inclusion and acceptance and rights for our people. If I had known Fran had Down syndrome I am sure the obstetrician in Hong Kong would have convinced me to have a termination. I think that would have destroyed me, because having Fran changed me as a person, she found the humane in me, she made me a fighter, she made me a better person.
So put on your odd socks (this is our symbol for the day) and support #leaveNoOnebehind this Thursday World Down Syndrome Day, for all those fantastic people who make our world a better place.