weathered storms

A PIECE of ME was lost when my son stopped walking

~ Betty Vertin ~ Leave a comment

I lost it today.

That is the truth. But the more I think and mull it over, the more I know I didn’t lose it today. I simply lost another piece of me. I will never be the same after today. Nothing happened today but more a culmination of everything over the last several months.

It is all happening so fast. Over the past 8 months, my life, just like everyone else’s, has been flipped upside down. I’m so overwhelmed. I am genuinely an introvert in every aspect of the word. I can speak so many words a day before I hit exhaustion. I need time to myself. I draw my strength from the time I spend alone. I have not been alone since March.

I am running on fumes. I had the best respite before Covid. Now, it’s unsafe to let anyone into the house for fear they could expose one of the boys. Not only that, but the care needs of our boys have changed so much in the last year that there are very few, if any, people who could come in and care for them.

I’m grieving. I haven’t had time to do so. I am sad that my son is not walking anymore. It hit me hard today because he didn’t want to go out and play in the snow. It’s just not the same for him anymore. I love that he has his chair, and we are finally getting the house so he can move freely around without hitting anything. I am grateful because he seems happier. But I must admit that every time I look at the dining room table and see the one chair missing, it punches me in the stomach. We should not have removed one to make a space for his chair. He’s 11 years old, he should still be walking.

I’m so damn mad. My son is losing strength. He can’t bend over, he can’t pick anything up off the ground, he can’t go up steps, he gets tired more and more quickly, and I see him losing pieces of who he is, too. Anxiety has wreaked havoc on him for years now. His friends are gone. He is lonely and sad. I am mad that losing his muscles isn’t enough, but God has given him so much more than that to carry. I want to take it all for him. I can help him stop walking, I can be his legs, and I can bring his things, but I can’t take away this hurt he is experiencing. It’s worse than anything I’ve experienced in parenting so far.

Many of these challenging moments over the past few months have been met with no grace from me. I’m so cranky. I’m short. I don’t like me in the midst of all of this. Where are the showers of grace I’ve been praying for?

I feel very isolated and alone. I had a few refuges before, but now, because of the level of safety we need to maintain for our boy’s health, I don’t go anywhere where masks are not worn or social distancing can’t be observed. I also feel so mad at myself because I know I can’t feel that way when our community has given us a new van and showed up at every fundraiser. Our community of friends and family will pay for the ceiling lift we are working on.

My dear husband. He just holds me and says feeling this way is perfectly okay. The constant barrage of things stacking on each other is hitting me in the real feels. It is so true; there is a physical pain in my chest like it’s been beaten.

I spent the day stressed, then grateful, then heartbroken and sad. I cried, dried my eyes, went to appointments, and then I cried and made supper. Now, I’m in my room, letting my husband be a single parent and writing because it is one of the few things that gives me peace. I’m over the people judging me for sharing these vulnerable, messy, hurting parts of me. I’m not perfect; I’m just a mom who’s been given a tough ask, trying to do my best. I am so absolutely human and feel those human failings so intimately today. Today has changed me. I lost a piece of me today.

I will leave you with these quotes. These quotes won’t leave me in the midst of losing my peace today.

“Every time the anxiety builds, God whispers: I have a plan.” -Lauren Fortenberry

I can only hope that the little piece I lost today is his plan. That it is a piece I don’t need anymore, than He will replace it with something better, something more like him.

“Remain in me, as I remain in you. Just as a branch cannot bear fruit on its own unless it remains on the vine, so neither can you unless you remain in me.” John 15:4

Here I am, hurting and mad, but remaining.

Weathered Storms

~ Betty Vertin ~ 17 Comments

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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