My daughter was born with a rare genetic deletion
and she struggles daily with what should be natural
body functions. In addition to being overwhelmed
with her complex medical care, I found myself
barely coping with sleep deprivation, grief and
multiple trips to emergency rooms; I was in a
desperate state of mind.
I was fortunate to connect with an amazing woman
who changed my perspective on life and living. This
woman had a large family and one of her daughters
had multiple disabilities, yet they all enjoyed life.
I was inspired by the confidence of this woman and
thought “if she can do it, then I can too”.
I have learned that I must make adjustments on the
way that my family lives but that we do not have
to give up on “Living”. Another mom’s
experience and strength gave me the courage to move
past my grief and learn to smile through my tears.
Family Story
I was pregnant and my husband and I were trying
to cope with the news that our baby has Down
syndrome. I was desperate to talk to other people
who experienced what we were dealing with. We
also wanted to talk to other parents who had
children of different ages with Down syndrome.
My husband and I had the
opportunity to visit three parents whose children
included a newborn daughter, a six year old son and
a 16 year old daughter. These parents were a great
support to both of us. They helped address many of
our questions, issues and fears we faced during my
pregnancy. I can’t
imagine what it would have been like for us if we
didn’t have that opportunity to meet these
parents and their children.
