Today's story is from a lady who is a great friend of mine, she also happens to be the chair of the Cornwall Down's Syndrome Support Group as well as being on the board of the DSA. She is a force to be reckoned with and certainly someone you can count on for loyal support if you find yourself in a difficult situation. I think it took me over a year to contact her in the beginning...
I am not a natural writer and have started this piece so many times. I guess what I really want to say has to come from the heart so here goes.
I came to motherhood relatively late and went back to work 6 weeks after my first child was born. It had taken me 5 yrs to conceive and carry my baby to full term so it was a bit of a surprise when I fell pregnant with Matthew when James was just 5 months old.
I refused all testing as I had had 3 miscarriages and thought no more about the possibility of having a child with downs syndrome. Matthew was born on 2nd June by elective c-section and I was told almost immediately that they thought he had downs syndrome. I was overwhelmed with sadness especially for the medics whom I had grown to know and for whom I thought it must have been so difficult for them to tell us.
I also remember being so sad that I thought I had ruined James’ life and that he would be forever saddled with his disabled brother.
Matthew had a very poor start to life health wise and stopped breathing at 10 days old. He was put on life support and for a couple of days we sat by his cot just willing him to live. I made so many pacts with God that it didn’t matter that he had downs syndrome I just wanted my baby to live.
He pulled through and we got on with our new life. I gave up work and we settled into the inevitable round of appointments that you will have heard about from other writers. At six months Matthew had another huge setback when he developed infantile epilepsy. Although he no longer has fits, the impact of this early setback has had a lasting and profound effect on him, affecting his ability to speak.
Through Matthew I have met some amazing people, some of whom I now consider to be life long friends. What is most fascinating is to watch the journey that parents take. To see them blossom into everything that their child needs and so much more. To see the capacity that parents like Hayley have, not just to be an incredible parent to their child with downs syndrome and their other children, but also be the crutch that other parents can lean on when they need to. Many of us would not have thought that we had this in us and yet when tested almost beyond what we can endure, time and time again we see parents of children with all sorts of additional need go above and beyond to support other parents on their own journey.
Hayley and I laugh now about the number of people who told her she should contact me in the early days after Natty was born, and those that asked me if they could give Hayley my phone number. I am so glad that when she was ready she did contact me.
I am often asked about the ups and downs of raising a child with downs syndrome and I explain it like this: It is the most exasperating, emotional, difficult, amazing wonderful thing that I have ever done, and I would not change it for the world.