26 years ago, we entered the hospital ward, excited soon to be meeting our third child. Dan (3) and Tim (18 months) were being cared for by friends. We had refused the blood test and only had the routine 12 week scan, so the joy of our first daughter’s arrival was marred for me when I saw her tell tale almond shaped eyes. I voiced my concern to Steve who replied that “she just has squashed new baby face!”
After a while a senior midwife confirmed my fears that she thought Heidi had Down Syndrome. We really struggled with this and were very upset and angry.
I spent hours looking to the future and worrying that I would never have girlie outings or watch Heidi get married! How daft.
But even then, I vowed that she would be as independent as possible and we would do all we could to enable that.
We stressed and fretted about how Heidi would fit into family life and how it would affect the boys and whether their lives would suffer from the unwanted extra chromosome.
Independence was the last thing on our minds for the next few months as Heidi struggled to get through each 24 hours. Thankfully after her AVSD heart repair she came home from hospital but the local hospital became our regular unwelcome second home.
Suzie came along just before Heidi was 2 (yes I had a nearly 5 year old, a 3.5 year old and Heidi nearly 2) I distinctly remember Steve bringing the children to meet their new baby sister, and thinking that I had been totally mad to have another baby so soon. However, Suzie slotted into family life very well and coped with being poked and prodded by her enthusiastic older sister! Their bond was so obvious from day one, the roles changing as Suzie overtook Heidi and learnt things with ease. Her joy in Heidi’s achievements were over the top and sounded patronizing but they weren’t, she just knew that her “big little sister” needed that extra time and help.
We decided early on that Heidi would be treated the same as the others, according to her understanding. She would not be allowed to use Down Syndrome as an excuse for bad behaviour or for special treatment. The other children soon noticed if we failed with this - I remember 4 year old Dan telling me that he would have been punished if he had been the perpetrator of Heidi’s latest misdemeanour!
I knew families where elderly parents still cared for their middle aged children and was determined that Heidi would leave the nest as early as she could – my maternal gene is slightly lacking!