When God is good but life’s still hard
I found this picture in a magazine years ago after the kids were diagnosed and when their bodies started to be affected by the disease. I remember sobbing as I pulled it from the magazine, clinging on to the hope that one day, they would both be this free again.
Free to run on the beach, and jump the waves without a wheelchair or a life-vest. I clung to this hope during some dark moments and I cling to it today. Just as I cling to my faith!
My faith is what gives me hope and keeps me going.
Without it, I don’t know where I would be today, eleven years after diagnosis.
It’s so much more than faith in God, its faith in goodness, in people, and faith in a purpose greater than what my mind could understand.
Although so many good things have transpired over the years, it doesn’t negate the pain. It’s like putting a band aid on temporarily. It helps for the moment but the pain is still there.
God is good, but life’s still hard
I heard this song almost 11 years ago and it spoke to me so much, that I play on repeat many days.
“No comfort in the greeting card
‘Cause God is good
But life’s still hard
And your heart just wants a reason for the world”
I think I have tried to find a reason for the world since I was born, many years before the kids were diagnosed, I knew that hard, and bad things happen and always wondered why. When certain things happen to you, it makes you question everything.
Today as I woke and remembered everything about the day that we got that dreaded phone call telling us Ella also had MLD, I can’t help but think momentarily why two of our children had to be on this life changing journey.
I pray, but not enough
I cry, but probably too much.
God sees, HE knows, and no matter the anger I may show, the the frustration I feel or the distance I may put between us at times, it doesn’t matter. I am loved through it all. For that I am grateful!
I wish I could be like others, but as my friend Ash would say, that is my inner critic, telling me what I SHOULD do, or how I SHOULD feel. I just need to BE! Be with my own feelings and watch them come and go, because that’s what they do. Nothing lasts too long. I learn a bit from each moment of pondering all the what if’s, and hopefully growth ensues.
To be honest, as much as I get mad that I am still sad and angry, when I look back is when I see how far I’ve actually come.
I’m learning to give myself more Grace, just as much as I give others, and that has helped. Why I have not been as kind to myself over the years as I have to others, is a learned mannerism and as much as I have learned that, I am slowly learning how to be just as kind to myself.
One day when my time on earth is through, I would like to know that I stuck it out, no matter how hard, all while showing my kids that it IS true…God IS still good, no matter how hard this life may get.
Fear Not 