Last week I read a beautiful email. I wanted to share something it read.
It was written by a man from Brazil named Ismael Portilho. I do not know him personally but he posts often on a email list I belong to for Glycogen Storage Diseases.
He has Type II, known as Pompe Disease. Pompe was recently made a little more famous because it was the topic of the movie Extraordinary Measures a couple of years ago. This disease, while in the same "family" as my Sweetie Pie's, has its own myriad of symptoms and side affects that are not at all the same as what Evan experiences.
The subject of dealing with disease and how it affects life, and our feelings was being discussed, also how family members deal with it as well. Mr. Portilho was kind enough to share his father's kind and wise words that he gave to him to help him face the disease he'd been diagnosed with.
' "Do not fear your destiny", he said, "If you'll be bound to a bed or if you'll be cured, be happy for the life you'll have. Do not tie your happiness to things that are not on your hands. These are God's realm and the world's capricious designs. Do whatever you can to be happy, and rest easy on your work." '
I found these gentle words of this father to be so moving and touching that I was brought to tears. These
are words that I believe anyone could benefit from in any trial in their life.
I pray that as time goes on I can provide that comfort and wisdom to my child when he comes to me with tears in his eyes and the questions of "Why?" on his lips. That I can give him the strength and presence of mind to go on and live when he may want to give up.
For now, I needed that encouragement. I'm so glad that Mr. Portilho shared this private moment. Many parents of children with autosomal recessive genetic diseases or other genetically passed diseases live with some sort of guilt for passing a burden on to their child. I personally haven't felt that guilt. I do have other feelings that I have not yet been ready to or able to form into words. For now I am just coping. I feel that fog lifting though as I get better at not fearing my nor Evan's destiny.