jeff
When Carol asked me to speak at this session she suggested the title: “Along The
Road.” She said “Talk about your experiences with the Foundation, your strengths and
resources. Basically, describe the journey of SWS”.
Just a few little things like that eh? I think I was asked because I have white hair
Actually it does mean that our family’s journey will give you a historical view of how
things were and how they’ve improved over the years. I would so like to motivate,
inspire, create hope, share laughter, and have you feel empowered as you leave here.
The best way to do that is to just be, to be with you, to share stories. I believe that
in sharing, we realize our kinship, and find common experiences in our journeys that
connect us and help us feel less lonely.
Before I start these stories, I’d like you to know that each person in my family has
been behind this effort. They’ve searched their hearts, answered my questions about
their thoughts, feelings and experiences, and have had the Grace to risk this kind of
honesty and exposure.
And why would they and I do this? Well, maybe it’s one of the gifts of living with
Sturge-Weber. I think we really are more open and courageous because we’ve learned
we need to be.
Forty-two years ago, when my husband Noel was 30 and I was 23, our first child,
Jeff, was born. It was a difficult birth, breech, and he was taken immediately to the
nursery.
Later, a nurse brought him to me to hold for the first time. There was a big black X
marked across each cheek. Shocked, I asked what those X’s were for.
The nurse answered, “There’s something wrong with your baby and they’re trying to
figure it out.” There’s no good way to find out your baby has problems.
Two-and a half weeks later, a specialist was able to tell us he thought Jeff had a
syndrome called Sturge-Weber. He told us the little bit he knew about the syndrome,
gave us a referral to the Well Baby Clinic at UCLA, and suggested we might consider
institutionalization.
Our Baby!? We didn’t even know yet who he was. I think that moment is when
my internal “mother bear” came into being. On the exterior I remained fairly calm and
quiet. But inside, I was fiercely determined that our baby would have every opportunity
possible to develop and thrive. When Jeff was a month old, Noel’s Pop said, “This baby
isn’t seeing.” We couldn’t believe it. “He’s only a month old; how can you tell? He was
our first child, remember.... To Read More Please Click HERE.
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The Sturge-Weber Foundation