Beautiful isn't she, well not so...she was on aol.com news not to long ago. Sadly, I don't know exactly, I skimmed the article, it's hard to read of a child struggling, at least for me, especially when there life is just beginning. I think of St. Jude's Hospital and how every moment, a struggle is in progress, parents waiting and wondering, praying for any kind of miracle and then I think of my troubles.
I go to bed and think about my life and lately it's not looking so bright to me. I think here I am at 58 over a half of century of life, and I look at her and think....if I could offer my life to her, if there was a way to transfer I wouldn't hesitate. Why, you might be wondering...because I lay at night and think about my troubles, that for her..she would trade just to live.
Although on the internet we all talk of our lives casually, it's what we do, it's what we are suppose to do, for you the reader, even for ourselves, who wants to hear of someone else's troubles, right. Yet, when doors are closed the internet is shut down, we all have our own personal struggles. None of us are without them, each finding an ending at it's own pace. For me, I've had a personal struggle for over 10 years...that's a long time. One that was handed to me by someone else, who's own personal journey intertwined with mine, making my life more difficult. And you can't get away from them for one reason or another it is what it is until...until there journey changes, they see more clearly the things they have done. It's the beauty of aging, behind it, leaves many lessons learned, hopefully making for a better life, a better person who evolves with time.
Children like this young man, Sam, who I watched on Katie Couric, a young boy in high school, much older than me physically, dies suddenly from complications of progeria. A gene that ages the body more rapidly than it should, changes his life. Again would trade his own for someone with struggles of the heart and mind. I remember watching this amazing young man with such a positive outlook, talking of what he planned on doing as nothing was wrong.
Again, I think of the nights I lie in bed thinking of my struggles, the tugs of mind and heart. The feeling of loneliness, the lack of visitations, communication, especially in the winter being a germaphobic, and simply wondering what I am suppose to do sometimes in this, the last play of ones life. Sounds so irrelevant doesn't it. I would have traded lives to wear his shoes. I would have traded even just a moment of my life to experience his amazing positivity, with a personality that changed so many people, I am sure, as they watched the show. Wishing they had just a touch of his outlook on life. He seemed to make me feel as if I knew him...a bright light in this world, he shined on the show.
I say, it was nice to meet you Sam, and sad to hear of the news you had left this world so soon. I was blessed by your life, simply watching you.
Times of troubles, we all have them...no matter how big or small they consume our lives as they visit. Don't they? Even at my age the journey continues with life still teaching me as the numbers get higher, until it's all over, changing who I am as they come and go. I have my good days and of course bad days, and this winter thus far has been more trying than usual.
Choices of the heart have to be made this year, one regarding my twin boy's with Down Syndrome, who made me a better person in more ways then I can begin to mention. They found a place in my heart, so deep, I never knew existed. A special needs child teaches the parent, unlike a normal child the parent teach. It's difficult sure, exhausting and challenging, yet it's also rewarding in the end, you come out so blessed just to have had them in your life.
My point in all of this...as I mentioned, today was a tough day for me. In fact this winter, there have been many tears, decisions to make, and more often wondering what's next. I do my very best to stay positive everyday, but there are just those days when it's tougher to climb the hill. So I cleaned like it was a spring day, the sun shining, a pure blue sky, the snow melted, as I looked out the windows it seemed as if winter was gone.
Yet my sadness remained, until I stumbles across this while I was cleaning...
A card that read...
Control is an illusion and so is feeling that there's a list of things,
you have to do and be.
You don't have to be anything but healthy to yourself,
and in these times, that's quite enough to accomplish,
thank you so very much.
So forget false expectations and don't let them bring you down...
Don't let them take even one precious moment,
of your happiness.
The world needs people who have been through tough times,
and made it.
So you just take it easy on yourself.
You are fine just the way you are.
Thank you... to all the little ones we see, if only in a picture, struggling somewhere to make it to the next day, children like Sam, and my son's who bless our lives just for knowing them or having them in it...make us say for even a moment how trivial the struggles of mind and heart are to us all...when there's is a struggle of life.
May God bless all of you, hold you in his arms, give you the miracle you pray for...and if not...thank you for being here with us..for whatever time. You brightened my life and for that I am so very grateful.