I have done some editing of this post because after posting it and then sleeping on it I felt uncomfortable with the original words I had used.
Owen is meant to have just turned 18 months old, -he was due the 27th of April arrived the 21st of March 2009). Its been a wild 19 and a half months. I am not sure whether to write that I have found peace with the 47th chromosome but I am in a good place at the moment. But until very recently I was still struggling with it.
For me the grieving process has been interuptted and complicated by Owens health (jaundice, cardiac failure, sleep apnea, cardiac surgery, hypothyroidism, and respiratory viruses, hearing loss (still WAITING for him to be well enough to have ear tubes in) and his newest health issue asthma. Each time he got sick it was like we hit another speed hump on the road of acceptance. We went on to survival mode and would do what we had to, to get him better. But then he would get well again and instead of feeling joy I often just felt exhausted and deflated and sad about Down Syndrome. Because, I would think we wouldn't be going through any of this if it wasn't for that extra chromosome. (which I know is not really true).
One of my biggest issues is the fact that we are THAT family, you know that family with the kid with Down Syndrome - at playgroup, at school, at soccer, at music. And I wondered why did that bother me so much but in a moment of clarity I have realised that this is about me.
As a child I grew up in a small town (just 300 people) our family was hardly "normal" with my Dad having a mental illness that he self medicated and everyone in town knew it and I think was afraid of him. I grew up with a great deal of shame, powerlessness and anger, we where That Family.
As soon as I could, at just turned 17, I left that town and started my own life and it was going to be "normal".
And it was .......until Down Syndrome and now I feel right back where I started out, now I feel like we are That Family again, ironic isn't it. So anyway realising this deep connection with my past and my childhood desire just be normal has been such a release for me, I realise it has what has kept me "in grief", I acknowledge that wanting to be "normal" will probably be a the thorn in my side, my weak point. But in that moment of realisation and since then, I have felt lighter, felt much more at peace with Owen having Down Syndrome, because it just is and yes it is who we are, we are - That Family - the one that loves, adores their kid with Down Syndrome.
So, back to grieving and acceptance, now I realise that this process is determined by the experiences of my past, my family relationships and my childs health and possibly a thousand other variables no wonder it is taking some time.
I can see how your past could have played a big role in the grieving for the loss of "normal" That makes sense, and it would be tough to overcome that feeling. Having a rough childhood would make it so you wanted a "normal" family even more!
ReplyDeleteI know one of my first thoughts after finding out Russell had Ds was "oh great now we are "that" family" I thought of how now when ever our name would come up in conversation or people would talk about us it would be follwed by "oh, and they have a son with Ds" The thought of that hurt me for a very long time...to be honest it still does a little.
The grieving is a process and I am finding it comes and goes...I am thankful to have come into contact with you...having people to talk to and understand really helps.
What is normal anyway? We stand out but I'm not sure it's a bad thing. I know how you feel though, I think a part of me will never get over the raw feelings of having my son diagnosed with Ds. I think I am ok with that though, I'm certainly not going to feel guilty about it.
ReplyDeleteYour story really touched me Viv, I can't imagine how difficult it must have been as a child. But you have a family of your own and you may be different but you are not "THAT" family because there is too much love between you all.