Friday 31 October 2014

I Bloom Where I am Planted: A Story of Family Caregiving

November is National Family Caregiver Month.  Here in the Caregivers' Living Room, we are celebrating by publishing your stories.  If you have a story to share, please send it to me at [email protected].  Let's celebrate our lived experience by storytelling!

My name is Susan Buro Hamm.   Included in my family is my hunky husband Abe, my lovely daughter Lexi(21), our twins who are 7, and a kinship foster baby who is 1.

I am a caretaker for them all. I call myself a domestic Goddess, I enjoy canning, baking, cooking and loathe laundry. In reality, I can't work outside my home, and sometimes, that choice breaks my heart.

You see, I am the caretaker for not just my family's needs but for Lexi's complex medical care. Lexi has epilepsy, metabolic disease,  and cerebral palsy. As if that combination isn't difficult enough, we add in some very challenging mental health issues. The reality is that I am her unpaid case manager, navigating through the world of adult developmental disabilities services. I spend numerous hours on the phone, writing emails, faxes, and talking with agencies, service providers, doctors, balancing budgets, seeking funding, and arranging schedules of workers.

Here are our beautiful girls - Lexi is the oldest.

I think that is the hardest thing about taking care of Lexi's needs and in taking care of my family's needs, is that I get lost in the shuffle. Everything else seems to take more importance and I often find it hard to balance. I don't mind being a mother; I love it in fact!  But what happens in my life goes way beyond normal parenting. It's above and beyond. I do it selflessly, whatever comes my way..I simply make more room on the plate. I rarely complain about my lot in life.  

Some place amidst it all, I exist. I would love to have a career. I never in my life dreamed I would be a stay-at-home mom, but most employers are not understanding of family crises that could strike at any moment. So, I am trying to bloom where I am planted, so to speak. I try to be the best possible caretaker I can. That includes never ever giving up on Lexi or what she needs to be successful and balancing the rest of my family's needs.
I have learned Advocacy in the last 20 years. I can honestly say I am a phenomenal advocate, I don't take no for an answer. I have learned minute details of government function. I have learned how to sail thru agencies and service providers.I have worked on learning those lessons 24 hours a day, 7 days a week for the last 21 years.

I do it with a great deal of learned patience, a lot of love and laughter, and plain old stubbornness. My rate of pay never changes, the holidays are few and far between, but the benefits and perks are pretty incredible!

I think the one thing I want the world to know about is grief. We all plan and dream when our children are newborns. We want them to achieve, be successful, be independent, be strong.  We all have those dreams. When those dreams are robbed from you bit by bit, it is devastating. The grief never leaves, it is quieted for long periods of times but it never leaves you. Every stage of life seems to bring the grief forward, only to be quieted again when my feelings get sorted.

I remember when Lexi was young, and very ill, we were driving to a doctor's appointment.  My mom was with us chatting with Lexi about the future. Lexi was stating she wanted to be a doctor or something along those lines. I remember looking at the trees blurring by, overwhelmed by an incredible sadness, knowing there was no possible way she would ever be able to do that!! I almost said something like "Lexi..that's not possible". But I caught myself.  A new resolve appeared and I swore that she would never be robbed of her dreams as I had been. It is not my job to burst her bubbles, it is my job to help her build them!!! If she couldn't be academic, she could be creative. If she couldn't ride a bike, she could ride a horse. If she didn't have a voice, I could give her one!!

That is how I became a phenomenal advocate, I empowered Lexi and myself by being her voice.I have learned to give Lexi a very loud voice. I have held news conferences to shame the government for their neglectful care of young adults with developmental disabilities. I have helped other families and those in need by founding a support group for parents of special needs children. While I am supremely frustrated with government services, I am not sitting around waiting for them to offer up solutions. Other parents along with myself have formed a group that is actively looking for  innovative solutions for the lack of residential care.I have spoken before a parliamentary select committee educating and enlightening them about the world of developmental services(or the lack thereof).  I have become an expert mom, it's my job! I have learned to keep pushing, pulling and twisting the strings of this life until something beautiful is knitted from it all: a changed world, a new perspective, or a lasting legacy.

I do it for her.

"The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving" by Donna Thomson is available from all major booksellers in Canada and the USA.  
"A clear-eyed look at the value of a life...What if a life was judged not by its monetary worth or possible economic benefit to society, but as a series of complex and rewarding relationships?"
Globe and Mail

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