Caregiving For A Child: Mary Beth Collins

 

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”

– Lao Tzu

 

 

 

 

Gratitude
caregiving

Mary Beth Collins: Juggling The Multiple Roles of Caregiver, Breadwinner and Cancer Mom

 

This is one of those conversations that made me stop in my tracks. It’s so full of strength, love and perseverance. And gratitude. Mary Beth personifies

 

An Attitude of Gratitude

 

But it is hard earned.

Mary Beth Collins is the single mother of two boys. Her son Josh was diagnosed with a very rare cancer at the age of two. Through chemo, surgery and a bone marrow transplant, Josh was declared NDE (No Evidence of Disease). But the journey was far from over.

Next came dealing with an onslaught of side effects: digestive issues, learning challenges, moderate to severe hearing loss and a host of challenges in the personal, academic and workplace arenas.

 

“You don’t have the luxury to worry about side effects.

Side effects are something that you tackle later if your child survives.”

 

The next twenty years would be an ongoing set of challenges to manage disease, search for wellness and to try to stay afloat. Mary Beth’s career changed as the need for work flexibility became apparent. A promising corporate job was set aside for a more flexible not for profit position as she responded to her son’s needs.

The psych-social impact of an experience like this tested everyone.

 

“You’re living month to month. Maybe three years out…

You don’t have confidence you can trust that your entire family will be intact beyond that.”

 

Financial toxicity, a term often applied to the devastating impact of medical bills, became part of daily life. As a single mother, jugging car payments, mortgage payments and medical bills was a source of constant uncertainty.

 

Financial toxicity

 

“Literally you’re just juggling money from one pot to another pot because something has come more dire.”

 

But through it all, May Beth found incredible strength and more than a bit of wisdom along the way.

“This is the nightmare creating stuff,” she admitted. “You have to make a decision to take it on.” Keeping focused on the reality, rather than the threat, became essential as scans and other tests provided more than ample opportunity for fear.

Through this Mary Beth exercised incredible mental discipline and was able to find daily joy.

 

“When you’re not reaching for what could be way, way into the future,

you get to drink in a little bit more of the present.”

 

Now at 22, Josh has found a bit of peace, strangely enough through Covid. The isolation that impacted so many people gave him the creative space to focus on his music.

 

Healing power of music

 

Music is entertaining.

Music is expression.

Music is extremely healing.

 

Through music, Josh is crafting a life that the disability community calls “an enviable life”. It is a productive life suited to his needs. It provides creative expression, accomplishment, and most of all joy for everyone. Especially for this mom who has raised and supported her son and all his special needs for over two decades.

 

 

 

 

 

Caregiving, Healing and Moving Forward

Balancing caregiving for a child is difficult. But Mary Beth Collins, inspires.

According to the  National Alliance for Caregiving more than one in five Americans are currently caregivers.  Sixty one percent are women; thirty nine percent are men. Isolation and financial toxicity are just some of the issues caregivers deal with. In addition, psycho-social effects and overall negative effects on the caregivers health are sadly typical.

In the second part of this podcast, Mary Beth explores the parents path through childhood cancer and leaves us with some invaluable advice for all our lives.

 

Mary Beth Collins On Being a Caregiver To A Child With Cancer

 

 

 

“It seemed like every time we turned around something else was providing challenge.”

 

“It’s tough for any mother. What’s the higher priority? The career I set out for or my children?”

 

“I don’t have the luxury to even dream. I am struggling to get through every single day.”

 

“This Mt. Everest of bills…”

 

“You do wonder…what if this is the last summer with my child?”

 

“You’re living month to month. Maybe 3 years out…You don’t have confidence you can trust that your entire family will be intact beyond that.”

 

“Take on that attitude of gratitude.”

 

“Parents deserve to heal.”

 

“Josh has lived everyday of his life to the best of his ability since he got his diagnosis.”

 

And from Josh in a recent tweet:  “Mom, I love my life.”

 

“Maybe with a little bit of grace, he will have many more decades to come.”

 

 

 

 

 

 

 

 

 

 

 

 

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