Plus est en Nous
When I interview one of our Ambassadors, Mary Beth Hopp on Skype, she is alone in her car, about to get the groceries, parked up where she can pinch the internet signal from a Whole Foods store – in their carpark. Her battery is dying, the signal doesn’t work at first… the car has to be turned on to charge the phone… then turned off so that we can speak…. then turned on again. (When we had first spoken, to set up the time of the interview, she had been in the basement of a different Whole Foods, swiping their WiFi signal.) I immediately warmed to her and related to the chaos. It seemed, reassuringly, just like my life.
We talk about life in general and how crazy it can be sometimes. It is a great chat. And we laugh a lot. “This is my normal!” says Mary Beth – and I know it is. She is fun… and funny. I imagine that humor has helped her have such a healthy attitude to the challenges life throws at us – and she has had more than her fair share.
“You never know what life is bringing you from day to day,” she says, and I observe her momentarily arranging her thoughts with care as she looks out of the car window towards the wall of the carpark. But her words are also full of purpose, and she turns back to the screen to make eye contact again.
Mary Beth has been married for 31 years to her college sweetheart. They travelled and worked for 10 years then they had their first child. Everything was fine and wonderful.
In 1998 they had their second child, and life was even more wonderful.
“Alex was born normally and it seemed that all was well until he was about 9 months old when we realized he was not meeting typical milestones.
“We relied on our pediatrician to give us the recommendations we needed to explore. Was he just a ‘late bloomer’? We asked or was there something else going on? To be honest, looking back, we were completely clueless and had no idea about what was to come. At first we just thought we would see the pediatrician, get help and be back on the ‘typical’ track of development. That was not the case. After many appointments with specialist doctors, psychologists, physical therapists, occupational therapists and speech therapists – testing here, testing there – we discovered a lot. He had low muscle tone (hypotonia) which affects many things like walking, talking, eating, toilet training, even eyesight. We also discovered he had a speech disorder called Apraxia of Speech; and he is also cognitively delayed (currently he is 18 years old and is on a Kindergarten to 1st-grade level). BUT he has the most amazing memory for people’s names, birthdates, sports statistics, movies and presidential history. He might not speak in full sentences and he may be hard to understand sometimes, but he is a pure soul.
“At first there were many weekly home visits by OT, PT and speech therapists, but then as he ‘aged out’ of home visits, I took him to get these services out of the home. (At the same time we also learned that therapy was not covered by our health insurance so not only was it a sacrifice in time but financially as well – although we would not have done anything differently of course.) I could not contribute financially due to his therapy schedule, and my other kids’ schedules, and the fact that my husband was an attorney who travelled frequently for business. It was tough.
“Eventually, thanks to lots of wonderful therapists’ intervention, Alex did learn to walk and talk”.
But it wasn’t to be that simple either:
“As he grew, over time, it seemed his ankles were rolling outward and his feet were not flat on the ground (or in his shoe) anymore. More doctors’ appointments led to surgery to correct both of his feet when he was about 11 years old.
“We also had him genetically tested and we learned that not only did he have a chromosomal translocation (one chromosome broke off and attached to another) but it was ALSO discovered that he has Charcot-Marie-Tooth, (an inherited disease that causes nerve damage.)
“Double whammy! Unusual to have inherited this disease AND have a genetic chromosomal translocation. But that’s our Alex! :)
“ANYWAY… our lives were forever changed not only because this was all incredibly unexpected and not part of our ‘life plan’ or the hopes and dreams for our son’s future, but our family had to make sacrifices both time-wise and financially. We have had to plan to sustain him in his future when we aren’t around, we have had to think and plan and rethink and replan. All the while trying to keep things ‘normal’ for our daughters.
“More importantly though, our lives were also changed for the better because Alex has taught us about the important things in life! Faith, acceptance, patience, love and understanding.
“Even though we did not choose these circumstances in our lives, we do choose to be positive.
All that would be enough for most people, but Mary Beth also was contending with the fact that in 2000 her husband was diagnosed with MS. She shrugs. It was, she describes, “a shocking event.” Our conversation pauses for a second while I process what that event would feel like to a family, what changes would have to happen to accommodate it. But Mary Beth continues with such positive energy and acceptance: “You do what you have to do and just get on with it.”
Their third child was born in 2002. All was fine. Mary Beth just kept “getting on” with it.
“I have just chosen to be positive (not every day of course – that’s not possible – some days are better than others). Plus, I’ve always known that, even though I have lots of friends and great family, I am the only the one who can pick myself up, to make the choice to carry on. It’s just what I have to do to be strong for my kids – even when deep down life can be so challenging.
“My husband’s MS means that we have had to change how we live; move from a family house to a condo to accommodate his wheelchair. The kids just take it in their stride. And yes, it leaves me as the person who runs all the errands, does the cleaning and the cooking. That’s just how it is. And yes, every day is chaotic, each one seems to fly by so quickly and they often feel like a marathon.” (Did I mention that she is on the Board of a charity called Misericordia that offers a community of care for persons with mild to profound developmental disabilities – oh yes, and she is on the Board of a hospital. And (just in case she were to have too much spare time on her hands) involved with her kids’ schools… ”You just deal with what is thrown at you.”
Then, in 2004, fate threw Mary Beth the cancer diagnosis. “At first of course I thought ‘Oh no, this is it, I am not going to survive!’ Our youngest daughter was not even 2 years old. But my mom and my husband and my friends are a true blessing to me and, with their support, I picked myself up. Again.
I had surgery, then chemo, then had radiation. And now nothing. Luckily for me, it was very curable.
“And so, what ‘with the cancer, the husband with MS and the son with special needs’ I am the go-to person for all my friends to recommend to give advice. I love sharing my story with people out there. To let people know that positive is possible. It can be scary yes but as you just don’t know what the future holds, you might as well be positive about it.”
“You know what I want next?” she says. “Plus est en vous” – there’s more in you than you know.
It may have been my school motto, but Mary Beth is walking proof.
For more about Misericordia click www.misericordia.com.