During the time from the diagnosis to the moment I met this amazing support group Kyle and I had been in free fall. Metaphorically I had hidden in the cupboard refusing to find out anything or talk about anything. Kyle on the other hand was on the information highway constantly trying to talk to me about disproving the diagnosis as well as finding out everything he could about DS. He kept referring to key features shared by T21 and how he wanted to get another blood test done.
I am lucky with Kyle as he is always supportive with me and when I told him about the support group we both agreed it would be good to go. I dont know what either of us were expecting from it but I think we both wanted to meet other babies/children with DS.
Before we walked in we stopped and I asked kyle “are you ready for this” not sure if I was. This was the turning point for us.
The group gave us hope. Here we met 4 mums who were all having a hot drink sat around a table in a cafe. It was so low key that I thought perhaps I had the wrong place. Surely the group should be more clinical and abnormal. I just found a group of mums happily chatting and so welcoming and friendly. My previous experience of baby and toddler groups have always been about achievement and whose baby is better and always very clicky. However, I did not find this with these ladies. I found acceptance, understanding and support. Their children ranged from baby to toddler to teenager. Hearing the same fears and questions voiced. I had just thought these were my dark thoughts I felt guilty about having. But apparently they were normal thoughts. This was refreshing and gave me hope. No longer did I feel alone. The older children there are walking and talking and eating !
I didnt realise at the time but on that day I met a community that I now consider family. They have been there through the lows and highs in our journey. The other good outcome from going to the support group was Kyle finally accepted Ailbe diagnosis.
Life with Saoirse 