Tuesday, October 19, 2010

day nineteen...advocate.

something happens to you when you are inducted into the "mother of a child with special needs" club...something inside of you is ignited...a spark you never knew existed within you...one you never thought that you could have. you become an advocate. you latch on to your new role and you push ahead...at first you keep your head down and you trudge through the mud...but every once in a while you look up, until soon you don't need to keep your head down anymore.
...
when camden was in the nicu...in those first few days of his life...i remember looking intensely at everything he needed to stay alive...the oxygen, the feeding tube, the iv, the bilirubin lights, the antibiotics they had streaming through his body...i remember watching him breathe...i remember the blue color of his newborn lips, the ups and downs of his little chest...i remember the congestion from the oxygen that i could hear as he would struggle with each in and each out...i remember the glimmers of hope that just one feeding session would bring into our eyes, and i remember the loss of it with the next...the stream of nurses who moved in and out of his tiny life...i remember thinking how much i had taken life for granted...that it was hard to live...and how i never even thought about it until this little being came suddenly in and showed me what life was. how each and every breath is an accomplishment...and not a small one. i remember realizing how lucky we had been, that the doctors saw what we did not...i remember how lucky i felt when they said that i could take my child home. i remember how lucky i felt when i saw the families who had been there for months on end and those who still remained there.
...
something happens to you...a light switches on...you tell yourself that this is it...that you can't hide anymore and that you have to be strong. i remember in the nicu when a nurse looked at my husband and i and our small, new family and said "you are his only advocate, you have to fight for him when no one else will". i remember feeling resentful for a second...i remember grieving for the life i thought that i once might have had...and then the light switched on, and i felt calm...and i knew i could do it...that i could be his advocate.
~
random fact about down syndrome #19: between 40 and 60% of children born with down syndrome will be born with congenital heart disease...but because of recent medical advances most of these babies will live healthy lives.

2 comments:

  1. i can't even express how much i love this post...every word...so true...

    ReplyDelete

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