I’m very new to blogging.  In fact, I have started and deleted several blog posts over the past 3 years in an attempt to start; this is the first one I’ve had the courage to share. This is something I’ve been encouraged to do by the ones I love, my husband and 6 children, brother-in-law, and lots of other friends and family.  It is also something I feel called to do. And so here it goes:

I think if this blog is to be successful, readers need to know me.   My childhood was rocky at best, a series of weathered storms. I never really knew my biological father and my step-dad was in prison for several years of my childhood and then died when I was a teenager.  During those years my siblings and I often lived in foster homes or shelters.

Surviving that and finding my husband and starting a family was supposed to be my happy ending.  Then my son was diagnosed with Duchenne Muscular Dystrophy, a genetic fatal progressive muscle wasting disease.  His diagnosis then led to the same diagnosis for two of his brothers. Life since D-Day (diagnosis day) has been another series of weathered storms.

I use the words ‘weathered storms’ because I think they best describe surviving, coming out on the other side of a difficult situation but not coming out unscathed.  I weathered the storms, but each of them affected me, changed me.  I used to tease my husband that I was like a bargain wife…he got a good deal because I was damaged goods, like the dented cans you can buy out of the clearance cart at a grocery store.  Looking back that was probably a harsh way to describe myself and it was a description my husband would never accept. But accurate, in that I was damaged, but still good.  Surviving something hard changes you, sometimes for the better, sometimes for the worst.

I remember a conversation with my older sister.  After my boys were diagnosed she was hurting for me.  She had said something along the lines of it not being fair that after a hellacious childhood, half of my children would have this awful disease. There were times I thought those same things, but what I believe is that all of those childhood years of challenges and heartache taught me to fight.

I survived my childhood. And although full of quirks because of it, I did become a strong fighter…the exact kind of fighter my children need me to be…the exact kind that has the courage to tell doctors I think they are wrong, the exact kind that can be with my children at hospitals and keep them smiling and happy no matter how much I am hurting on the inside.

Surving starts to mean something else after a storm.  It is not just living through something, but learning to live after something.  It wasn’t until my children were diagnosed that surviving meant making the most of every minute and enjoying my family in spite of what the disease was doing to the boys and to our family.  I learned and am still learning that even strong fighters cannot do it alone.  I need the kindness and support of others, the love of my husband and children and the faith that God is with me every step of the way.

The first series of weather storms made me a fighter, sometimes a viscous fighter; too independent; and sharply jaded.  The second storm in my life, the diagnosis and beginning stages of Duchenne rounded out the jaded edges, lowered the walls I had built around me.  I had to learn to accept help and love. Weathering the storms in my life is helping me become the mother I never knew I would need to be.

 

 

 

 

 

 

 

 

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