I have a son with Duchene’s Muscular Dystrophy (MD), which is a condition that makes the muscles slowly deteriorate and “they” say causes a life expectancy in the 20’s or 30’s.
Is it easy to live with a child with that condition, or any other? No, there is a lot of heart ache and heart break and letting go, sometimes daily, sometimes every moment, but is that not the same for parenting every child? Ours might be just an amplified version.
Do I always deal powerfully with my son’s condition? No! Sometimes I am just tired of all that is asked, is needed, and I simply don’t want to help him, don’t want to be nice or supportive.
Each member of the family may feel this at any time. And that is normal. But, MD is part of our lives. Every so often I will fight with God and throw a tamper tantrum, then I pick myself up, dust myself off and let it all go and go back to my life.
The other side of the story is that I have learned to be very grateful for what life has dealt me.
I am grateful for the little moments, for the love I can feel, for the flower in bloom, for each one of my children, for all the beautiful moments we have together. Also, I am grateful for the challenges MD brings me as it helps me be more mindful.
I am learning to slow down and be patient, as my son moves at a slower pace- and believe me, patience is not my strong suit :-).
The truth is that we have an extraordinary life and get to do things other people may not do out of fear. Who knows what tomorrow will bring, so how can we live with no regrets and do what we think is right and important?
Four years ago, my husband took a 3-month sabbatical and we, the whole family, went on a most amazing trip. One of the gifts that my son’s condition brings, is that we take chances and try to live in the moment whenever possible. It brings so many opportunities for adventure and joy.
One of my daughters asked me why her brother had this condition, and I told her I did not know, but if I had to choose between my son with MD or no son, the answer was clear and she agreed.
And the journey continues!