Above all, the main stupidity in our lives is people not seeing the urgency of whatever Deedee needs... as SMA is a treacherous snake that attacks and kills when least expected.
Every week a new death... Every week we see little lovely heartfelt videos of the little angels... Every week we all gather as if under a tree, under a moonlit starry night, to review and tell the story of those big smallest of heroes who have fallen to the SMA monster. Only parents of critically ill kids coud understand what this means... Every week you live what another family did, and your heart gets deeply burned and scarred forever by their passage, by their journey, and by their destination.
People may ask: Why keep watching the same thing? And some may wonder if it is just a sadistic vein that drives us to do this strange ritual. Well, yes, it is a ritual... a ritual to honor a saver a short life that was very important, a short life that meant something. We watch to learn what drove that life, and to reach deep into the waters that made up that life, savor it, see what is important and that so many will never get to even understand.
Every time it all hits home, and is indeed very painful This week one specific case got to me like no other did. Such was Jonas effect. He got his MAW trip in September, and died just last night. It all may have come from a slight cold that attacked him and didn't let go, and as I read older posts I saw that his parents knew that the time was nearing all because of the little signs... the little attitudes... the long nights of respiratory distress... This kid is only 5 months younger than Deedee. Same gorgeous, piercing eyes.
Oh, the pictures and the piercing eyes! Why they must all look so much alike! And you look into those blue-greyish pools of wonder, and you get lost in an ethereal wonderland that is so misterious, and stunning, and chilling to the bone! I see that stare and I just cannot help to think about what Deedee wants, what we want for her, what she could do against all odds... It is heart-wrenching, as the odds are NOT at all in our favor, the sands of time keep running faster and faster, and the more that it becomes elusive the hardest that the sands are to keep. We think in terms of years and years... We cannot stop to think what is the unthinkable happened tonight... or now. Yet somehow, reading through Jonas's blog and watching the pictures, these questions jump heartlessly in front of you, and stab you mercilessly. Nothing has ever broken me in my life, I even kept hope after the horrible diagnosis. These questions come to break me. A life without Deedee is simply a life without music, without beauty... without cake. I just realized that of everything I have, you take Deedee away and then all the colors will fade away. She is my muse, my inspiration, my hero. I cannot bring myself to think of her departing... How could she? She is a stubborn girl, and as long as she wills it so strongly, she will stay here with us. I cannot bring myself to think that she may get tired of all this... of all the stupid careless people that crosses her path... I am so scared of her quitting just because of this!
Why would I think that? Well, it is not the amount but the constant parade of clowns that simply don't believe she understands everything. They don't care to hurt her feelings, they don't care what she thinks or wants... I really hate these professional jerks who come and talk over her about her in front of her as if she were invisible and nonexistent. How would I feel if I were trapped in a body that won't move, with a voice that no one understands, and being able just to look... saying yes or no with deep blue-grey eyes at least for a while... I know I would get tired of it all, and would simply ignore everyone I didn't like... I would rather close my eyes and deam of my on wonderland.
It is enraging and discouraging when you know that the beauty and all the music and colors in the world can be destroyed in an instant by a stupid so called homo-sapiens. Keeping a kid with a kid's mind in these twisted times is so difficult, all because of the mangled attitudes and lines of thoughts of the adults. We show her all reasons to stay and love life, but people keep showing her lessons about stupidity and how cruel and petty and unkind the world truly is. And then they wonder why she is unresponsive or aloof... or sad.
We have a rare flower in our hands, and the environment is killing it even more than her genetic illness. We have a rare flower that has counted rare days to live, and the environment expects it to assimilate instead of trying to mold itself to the flower's needs which won't be forever.
That's why we fight and become the troublesome parents... we live with exagerated sensibilities because we have an unknown expiration date that we have to handle with a smile while we juggle rent, utilities, a job, and then some. That's why we get to know despair and loneliness so intimately. No one else understands, and won't really even try to. The world have office problems, lovers problems, racism, intolerance... but it all pales at the sight of a kid who has not even learned to live and that receives the firt lesson for survival: Just breathing. We face death every day, every hour, every second. Guess what? It is NOT fun. This is NOT a vacation, or an excuse to live off welfare and foodstamps, as so many say or think... This is all about long hours withou sleep, suctioning secretions, using the ambu-bag, doing CPR as second nature, watching pulse oximeters's numbers run down and then up again... This is all about a caring that will go on, as a cycle, until will is lost. This is NOT for the faint of heart... watching how your child goes from moving her hands to just being able to slightly move a thumb, watching your child desperately stare at you whenever she cannot breathe just because someone didn't move her o positioned her appropriately. There is no time to re-charge, there is no second to loose as a second is the difference between life or death.
Do people actually realize what us parents with critically ill kids go through? Of course not. That is why most of us end up isolated, alone. Friends stop being friends, family stop being family... And strangers become the unnamed sharers of tears. Somehow the material world transforms into constant annoyance and headaches. And there seems to be no end from this maze. The ironic part is that we learn what is truly important, and if we love, our love grows beyond measurement. Such is the strange dicotomy of it all.
