Wow what a whirlwind week of emotions it has been. It has been amazing to see so many people raising awareness as much as they possibly can, especially when some of those people are ones who have supported me and welcomed me talking about Jason.
This week there has been so much discussion around baby loss, in parliment, social media, radio and on TV and it has been a long time coming! There is still so much taboo around baby loss however I do still feel like most of the conversation has been around stillbirth and miscarraige and once again neonatal loss is widely overlooked. Jason lived, he was not stillborn and there is still so many unanswered questions about how babies suddenly die after being born alive that isnt researched and I feel strongly that the baby loss community can be very split in terms of how babies die.
Ive not felt like I can join in with this year blaw as much as I would have liked, ive been amazingly busy with work and life in general which has meant my mental health has taken quite a hit; which has meant grief has come along for the ride and I have found myself feeling much lower than usual. As a result I have had to take a step back and think about what is important for me and my family at this time and knowing I am going through another wave of guilt and grief is enough without trying to support everyone else too.
Tonight is #waveoflight and I have lit my candle for Jason, my tiny little twinny bean and all the other babies who sadly are no longer with us.
Happy WDSD to you all.
For those who dont know World Down Syndrome day happens on 21st March every year. This is because of the triplication of the 21st chromosome in a person with DS.
DS is very important to me. I am lucky enough to have a younger brother who has DS and I couldnt imagine my life without out. He has made me the person I am because of who he is. I spent my childhood being known to lots of people as Zacks Sister but i didnt mind because to me he was so much more special. Yes he is special but not in the way you might think. His DS doesnt make him special, its just him and he has never let his DS stop him, if anything he has achieved more because of it. I am so proud of him and the young man he has become and I will continue to be proud of him.
My Son also had DS but we didnt know until his post mortem results. I remember worrying that I couldnt conceive and ive always said if I was unable to have my own children I would adopt a child with DS. Knowing Jason had DS makes losing him so much harder. He would have achieved so much I just know, like my brother his DS wouldn’t have stopped him. I spend a lot of my time comparing what Ellie can do to what I think Jason could be doing now, Id be planning his 2nd birthday now but instead all I can do is write about him and celebrate the fact that he too was lucky enough to have Down Syndrome ❤
October is Down Syndrome Awareness Month and to me is pretty important. As you may know October is also Pregnancy and Infant Loss Awareness Month and for me, both go hand in hand.
Continue reading “A World Without Down Syndrome?”