I've been wanting to write about something for awhile but haven't had the words. I still can't explain why it even bothers me so much, but I've got to get it off my chest.
Down syndrome did not kill Jameson. Lymphangiomatosis killed him. And it has nothing
to do with Down syndrome. He is actually the only known and documented
case in medical history of someone who had both Down syndrome and
I'm sick of people assuming that because he had DS that is the reason he
died. Yes, people with Down syndrome are more prone to have some
problems with their heart and GI system. Yes, leukemia rates are higher
with people who have Down syndrome. But my son's death was not related
to any of that. And just because some people with DS get sick and have
problems, it doesn't mean everyone does. There are plenty of healthy
and active adults with Down syndrome in this world.
Down syndrome is not a death sentence. Down syndrome is not a bad
thing. Parents of kids with Down syndrome are not waiting for their
kids to get sick and die. They are living life with their families and
enjoying extra blessings and extra love and yes, extra challenges during
their lifelong journeys.
If you want to know about our amazing life with Jameson, Down syndrome
will certainly be a part of the story. If you want to know about his
death, it doesn't even factor in; just look up lymphangiomatosis.