Many lifetimes ago I was an art major in college. For years now, I have thought of thousands of other majors that would have helped me more in my present day career as a mother coordinating the very complicated medical needs of my daughter and my son’s ADHD. Nonetheless, art was the path I saw myself taking at 18 yrs. old, a path that seemed to quickly come to a dead end.
During my brief time as an “Artist”, if you could even call me that at that stage, I did however, study balance and perspective…a LOT! Now as I watch my children struggle through their daily lives, I’m finding myself searching like a Renaissance artist for the perfect balance and perspective. Though I may no longer be looking with my pencil or oil paints, I have a much harder and deeper search. This search is not about becoming famous or gaining riches of money and fancy things, it’s about providing a stable home and loving environment for my children, keeping a marriage together under tremendous stress, pressure and grief, and not losing myself or my faith in the process.
How is it possible to do all these things? How can parents survive in this atmosphere? How does a marriage survive? The truth is sometimes they can’t. I know so many families that this beast of a life has torn apart. I can’t say it was their fault. It sure is not my place to judge them or even for a second say they didn’t try hard enough. In our society, we see people every day that do not have the strength to say no to a donut. These same people tell us their opinions about decisions we should and shouldn’t do with our children with special needs as if we (parents of children with special needs) should have all the will power in the world. Well, we don’t. We are just human beings trying to survive. I think one difference may be is we have no choice but to look harder for things that will bring balance and perspective to our lives and the horrors we see so regularly.
With Greatness comes Great Responsibility. This is so true but I also believe a lot of times with Great Responsibility comes Greatness. When I read about the victim of the Holocaust, I can’t help but see Greatness. These people certainly didn’t ask for the suffering and responsibilities that were forced upon them in the concentration camps but since then they have been a shining example of greatness raising wonderful children, grandchildren and showing the world examples of love and forgiveness.
I have to remind myself that I am so blessed. It is so easy to get frustrated and think we deserve better. When I look at girls Justice’s age at the mall, I want her to be healthy, popular and independent like them. I start to think how unfair it is that she is now on oxygen, getting a wheelchair, has had 31 surgeries and has to see a doctor at least once a week. But then I remember, Justice was born in one of the richest countries in the world and because of that she is still alive. I still get to tuck her into bed at night. When Justice needs a surgery, yes we have to go to many many appointments to make sure she can undertake the procedure but Justice gets to have the surgeries she needs. So many children in this world need surgeries they do not have access to, let alone state of the art equipment, world class doctors, a clean hospital, proper meds and toys, games, kid food, etc…just to make her recovery the best it can be.
Yes, I fear for her life at times. I fear her body will give out but I am blessed that I’ve never feared bombs, militias, my country or really even any country. I feel very safe. This allows me to concentrate on providing that balance and perspective for my family.
I’m not saying balance and perspective are easy, my dog alone can make me lose them but they are still very necessary. So this morning as Justice is vomiting, on a Pedialite 24 drip on her feeding pump, crying and screaming for mommy to get the pressure out of her tummy and make it start working again, I will keep reminding myself that it could be worse. We’re still here safe and sound and if things get too far out of control I have a wonderful hospital a phone call away. I’m going to take a deep breath, make sure she keeps her oxygen on, drink some more coffee and say a prayer to Our Lady asking her to ask her Son to give me more balance and perspective.
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