Tuesday, December 15, 2009
“Just” a baby! that is what I am told repeatedly from people…and I also try to convince myself of this concept…except babies are only babies for so long…then they become kids, teens and then adults…is Maddie going to be referred to as “just” an adult…or will she be referred to as “just” a person with Down Syndrome…is she going to go through life continually amazing people…I hope so…my point on this concept is that yes…she is “just” a baby that has Downs Syndrome and she is considered to be Mentally Deficient…she will always have the sigma no matter her abilities…this scares me…she is “just” a baby with higher risk factors of EA, TEF, ASD, leukemia, celiac, Alzheimer, and she will be uninsurable if we lose our coverage…all because of Down Syndrome…oh yeah! I have people coming into my house on a weekly basis to help with Maddie…and she has more specialists that look out for her then I can count….mind you this is GREAT but not “my normal”…and still she is “just” a baby…people tell me it is because we have expectations for Maddie…is the reason she is doing so great! the thing is I think we all have expectations for our children…but it only can take a person so far…then they become who they are and it is up to them to be the person they want to be…Maddie better be comfortable with all the illusions of Down Syndrome…because that is the burden that is placed on “just” a baby!