by Angela Renczarski
about the author:
Angela has a teenage son with Duchenne and an adult daughter. She’s happily engaged to a gentleman who also has Duchenne. She is a health coach and life coach in Kansas City. Angela can always be found driving Xavier around in the van and laughing at Ryan’s jokes.
When they said the words Duchenne muscular dystrophy to me and told me my little boy had it, I was beyond devastated. I’d been watching my father live with MS for 30 years; now they’re telling me I’ll watch my child go through the same thing?!
I refused to accept it. I begged God and the doctors to help him, how could this be? Explaining to people no, it’s not what Grandpa has; it looks the same to us but it’s very different.
The next few years were rough and hard to remember. A lot of fighting with my ex-husband. Hardly knowing what my teenage daughter was up to. Trying to understand the kind of life my son would have and for how long.
All I can remember is drowning in the sadness and grief I tried so hard to hide from my kids and the world.
Fast forward Xavier is a teenager. He’s in a powerchair. It’s his turn to be devastated.
“Mom, will I ever walk again?”
Me who can’t handle the truth, “The doctors and scientists are working really hard to find a cure!”
His physical therapist, Grace, “Mom, you might not want to say that, he needs to know it’s ok if he doesn’t walk. He will still have an amazingly valuable life.”
Grace convinces me God has a plan even if it doesn’t involve Xavier walking. I decide to live in reality and give my kids the best possible life I can. Xavier’s life will be wonderful & meaningful no matter what!
I become aware of something brand new called Family, Friends, and Duchenne. I talk to Lindy, the brilliant woman behind it, and say wow, this is exactly what I need. I find out there are men in their 30s, 40s, 50s living with Duchenne!
Xavier and his massive social anxiety quit school and I decide he’ll get a HiSet (GED). He can still go to college! We go on road trips. Xavier talks constantly about wishing he was “normal.” I decide he needs Duchenne friends but he refuses to Zoom or game with them. I find out there’s a therapist/mom named Lauren with 2 Duchenne sons and I call her. She tells me to get him down to Dallas for the PPMD conference and he’ll make tons of friends!
At this point I want him off prednisone because of his anger, anxiety, aggression, and osteoporosis. Dr. Statland says find a therapist to work with him, if it doesn’t improve he’ll switch him to deflazacort.
Two years (thanks covid) and several therapists later I find out there’s a doctor of psychology with a masters in family counseling who has Duchenne! Say what?! I decide this is our guy, this Dr. Ryan Russell will help my son!
I had sought Dr. Ryan Russell out to help my son, but it’s me who really needed him
– Angela Renczarski
We go to Texas for Duchenne con. I bring Xavier, my mom, and my ex-husband. My goals are simple. Find friends for Xavier, find a dad group so his dad can get off my case, meet many Facebook friends in person, and find Dr. Ryan Russell!
The first night of the conference, Xavier refuses to go to the meet and greet. I go anyway and take a picture of the room so Xavier can see it’s not scary. I recognize people from Facebook including the esteemed Dr. Russell but there are a lot of people around. I can’t approach someone with people around, are you kidding? I wonder where Xavier gets it.
The next day we’re in the ballroom but there are no people because everyone is inside the actual conference listening to the speakers. I insist Xavier will go in and listen when Dr. Russell is speaking. Xavier insists no he will not, and there is no way he will meet any people, ever!
At that moment you’ll never guess who is rolling across the ballroom! I do believe I floated right over to Dr. Ryan Russell.
I completely spazz out and invade his personal space. He doesn’t realize at the time this woman hugging him is the extremely attractive mom who has been messaging him on Facebook. His caregiver takes our picture and he gets my number so I can text it to him. I mean that’s why he wanted my number, right?
Two weeks later Dr. Russell messages me and I realize very quickly this man is a treasure! I had uncovered a gold mine I believe many women could not see beyond the Duchenne. I was afraid if people knew what I had found they would try to snatch him away from me. I had sought him out to help Xavier, but it’s me who really needed him.
For the next 3 months we text and talk daily. I go to Arizona to see if this is for real. By the time I leave I know he’s my other half. My life plan of raising Xavier until one day me and my long white hair move to a commune of artists and gardeners changes to a plan of raising my son with the love of my life and our 4 cats, while spreading a message of hope and healing to anyone who will listen.
…these guys we love give us so much more than DMD and MS ever can take from us.
– Angela Renczarski
I have lived in the world of rare disease and Duchenne since I was 10 years old. I’m here by choice because three extraordinary men I adore didn’t have a choice. You play the cards you’re dealt. They did not choose progressive, debilitating situations but I choose to love them anyway.
Because of them, the devastation I felt as a daughter and as a young mom has been replaced with resilience, hope and fire. Fortunately, I didn’t have to go through the devastation again with Ryan. He did that years ago. He accepted his diagnosis and decided he will make a difference in the world no matter what.
Your son is or is becoming a man worthy of love, friendship, desire, independence, and life without limits. Please believe in him. In the meantime, he’ll teach you resilience, extraordinary patience, and boundless love. Your inner Karen will appear when necessary.
Duchenne is a club none of us want to be in. But these guys we love give us so much more than DMD and MS ever can take from us.
Read “Dreams Really Do Come True” by Dr. Ryan Russell
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