Like every morning, I just spent a good 20 minutes taking off Nicky’s diaper from the night, changing all the bandages and Mepilex Lite pieces all over his bottom and thighs and replacing them with clean ones, and then putting on his underwear for the day, all the while Nicky is crying and screaming in pain. Before I ‘roll’ him to his computer, I have to make sure he has his urinal handy, he has fresh ice and water and give him a dosage of his pain meds to alleviate the pain from the previous night’s bandage change and the painful effects of the laxatives I give him at night. Throughout the day I keep refilling his water and ice, perhaps give him more pain meds, take him to school (taking Nicky anywhere is not exactly an easy feat), and then at night we spend several hours changing bandages. Tomorrow? Repeat, then repeat the next day and on and on.
It would be the easiest thing in the world to be mad and bitter, and I am not a perfect human being, although I strive to be, at times I fall and stumble. I get down on myself, I have a good cry. I don’t want to ask ‘Why me?’ but sometimes I do.
October 2010 – Nicky was just out of anesthesia here… poor guy!
I remember clearly one evening at the Amplatz Children’s Hospital at the University of Minnesota almost exactly 4 years ago. I had taken Nicky for a counsel with Dr. Wagner for a ‘possible’ Bone Marrow Transplant (which we then decided against… long story, it will be in the book I am writing about his life) and after they took biopsies and took photos, we were wheeled in the recovery room. While Nicky was coming out of anesthesia, the Nurse who was taking care of him was curious about EB and had a million questions which I eagerly answered. Somehow the conversation shifted to Alex, so I told her about his stillbirth and the following miscarriage, and then I also told her about my poor husband waiting at home, about his strokes, and how he could not take the brace and shoe off by himself so while we were in Minnesota for 3 days, he was at home, sleeping in his brace and shoe. I will never forget the look on her face and what she told me next. She said it was more likely to be hit by lightning than having all these horrid things happen to *one* person!
I chuckled at the time, but the truth remains, fate has picked on me. This is probably why ‘percentages’ do not offer me much solace. If someone states that 97% of this and that turn out fine, I am sitting there wondering and worrying about the 3%. After all, Nicky’s form of EB is 1 in 2.3 million. Having a stillborn is a 1 in 100. Having a stroke at 50 years of age for men is listed as only a 1.6% probability. Needless to say, sometimes I am indeed bitter or perhaps jealous on how cavalier people in general can be about their life and the life of their loved ones, ranging on what they eat (hamburgers & french fries? Yuk), what they do for fun (Skydiving? Shooting? No thanks), or take unnecessary risks during pregnancy and childbirth are on top of my list. When I got pregnant with Connor there were no unicorns and rainbows for me, I was wretched with worry. Not for one minute I assumed that being pregnant meant I was going to have a living healthy baby 9 months later, and I refused to do anything that even remotely put his life in danger. I wish I could go back to feeling the way I felt when I was pregnant with Alex, so happy, so carefree, alas, life had taught me better.
But isn’t bitterness just another word for heartache? I laugh sometimes when I read of what other people worry about, talk about or judge. Gosh, I wish I could worry about silly stuff too, stuff that do not at all effect my life in any way. Truth is, I want to worry about unimportant stuff too, but I cannot. I have daily reminders of the crappy cards life has dealt me, the ridiculousness of the worries of others reminds me that perhaps I can use my bitterness to give me strength to fight for what is truly important.
How do I fight bitterness? What works for me is to surround myself with positive reinforcements. I avoid any negativity. I decide every single day to be happy, because I know how bitterness and anger are like poison, so I do not judge, I do not criticize, I do nothing that does not feel good. I try my best to own the pain so it does not own me. I can work daily to make sure this bruise does not take over my soul. I don’t pretend that the hurt is not there, I don’t hide it under the rug, I deal with it and let it go. I am not perfect, and I know sometimes the ugliness does come out, I am a work in progress. Like I said in a previous post, I am desperately seeking Zen.
And while I work on myself, let’s not forget I am also my sons and my husband’s cheerleader. I cherish that role most of all.
Love and Light,
