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...
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| Matthew in Disneyland |
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.
Yup!
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