Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.
Monday, March 12, 2007
Siblings (Inspired by mumkeepingsane)
I really enjoyed a post written by mumkeepingsane over at It's All Okay. She was talking about siblings of a child with special needs. This blog entry of hers got me to thinking about my two, my veritable pumpkin and my ephemereal peanut.
I've always felt blessed with my two beautiful children. Gracie was born when Sandis was 2-3/4 yrs. old. I became pregnant with my beautiful peanut just around the time that it was becoming more and more apparent that Sandis was not your run of the mill two year old. Sandis was a two year old that achieved remarkable feats of: climbing, sneaking, running, hiding, and getting into things he is most definitely not supposed to. When Sandis was 2-1/2 and I was 7 months pregnant with the peanut to be, he climbed up into the very top shelf in my kitchen (an admirable feat even for a five year old, much less a two year old) at inbetween two to three am to garner access to my purse. He then took the purse down from the cupboard (so exquisitely out of reach i felt) and dumped it on the floor below, only to imbibe several (an unknown amount) of my anti-anxiety pills (klonopin). This small feat landed Sandis in the hospital for at least seven days. Imagine also the amused looks I got when I told this story, to unbelieving ears....
Gracie herself was sick at birth. She spent five days in the NICU, and as such I did not hold her until she was five days old. She quickly became fascinated with her older brother. Sandis, in turn, was fascinated with his baby sister. He took to sneaking into her crib every night, just more of his midnight sneaking, but this I could deal with more than wanderings outside and purses dumped on kitchen floors. I remember the depths of Gracie's fascination for Sandis. I would hold a bottle before her eyes, and she would follow that bottle with her eyes everywhere....Unless of course Sandis entered the picture. This boy was more special than even food to her!
As Gracie grew (but did not walk until 18 months and did not sit until 9 months) my two children were unseparable. Sandis undertook the caretaker role. He was always overwhelmingly protective, and he has even been known to scold me for being "mean" (yes even to this day.) He will not let her fall too far behind, and she is the one and only child that he will give half of his candy to, WITHOUT prompting. He does it because he LOVES her. He will kiss her to stop his tears, and he will hold her at night when she is afraid. They are beautiful. I have over and over again recanted how lucky I am to have two children who so easily understand their importance to one another.
But they are both special needs children. And I am a special needs mom who is often overwhelmed. And I wonder so often, will they realize what they are missing? Will they be mad at what they don't have? Will Gracie be jealous of the time I spend with Sandis? Will she feel that the difference in discipline is unfair? Will Sandis be angered at my tendency to baby my little girl? Will he bristle at my additional attentions to her?
Gracie must endure the time I spend with Sandis working on his home Occupational Therapy regimen. She must be patient as we go over schedules and compartmentalize our day. She must understand that sometimes Sandis needs to do things a certain way. She needs to do this and she does. It is all she knows and it is all she ever will know.
Sandis must understand that there are nights that Gracie will sleep with me. It is just easier to have her close when she is ill. He must understand that she ALWAYS gets to get dressed in my room and he NEVER does, because Gracie needs help with her braces. He recognizes that she cannot do things with pencils and crayons and work her hands like other children. But it is just how she is. That is the only way he's ever known her. And he loves her still. It is all he knows.
And one day both of them will look up and realize how unique our family is. I hope they feel blessed by what they have with eachother. I hope they build off of eachother. I know Sandis will understand that physical disability is not a precursor to ridicule or failure. He will know because he will watch Gracie everyday overcome each problem she has with her joints and muscles, and he will watch her poke her fingers and take her shots every day. He will watch this and she will seem just as wonderful if not more wonderful as those of us who are not physically challenged. Gracie will understand that a neurobiological disorder is no excuse for not succeeding in the world. She will watch her brother grow and she will watch him succeed. And in the meantime he will make her smile and laugh and love more than anyone she will ever meet.
They are so lucky to have eachother. And damn. I am so lucky because I get to be a part of something so stinking beautiful.