4 years ago I fell into a huge hole, my childs diagnosis was devastating and getting through those first 2 years was so so tough. I honestly thought I would never climb out again, I lived in constant fear and I was sure it would never get better. Life got better but the emotional struggle just didn’t seem to get easier. Then covid came along and lockdowns and I just thought now what! Is this it, will this be the final hit for us but a very special charity did research to see what this meant for our single ventricle children and gave us more and more reassurance as time went on. I realised that I had put us all in a type of lockdown long before covid because I was so scared for so many different reasons. Even when we did venture out I would panic and never relaxed properly.
Today I feel 100% stronger, I do get scared sometimes of course and I will always worry about my children. But I am comfortable with myself, our situation and confident in my very special boy. I have even started to step back a little and let him try new things which would terrify me before and yes he is amazing me all of the time. The diagnosis is scary but what we can do beyond that diagnosis is huge! Life isn’t a diagnosis, it really is what you make of it.