December 2017 Suzanne Morneault
December 1, 2017
Suzanne Morneault December 2017
When I think of brain injury it paints a certain picture in my mind of a fun filled family day at the beach. Yeah, it sounds kind of weird to draw this picture, but bear with me. Picture this: things are fine, family and friends are hanging at the beach. In my imagination, my adult children are playing volleyball, but for sure, I am just lying there soaking in the sun, smiling because life just can't be better than that. The kids are building a sandcastle. I could see my husband throwing a Frisbee with one of the kids. All is calm and no one is noticing that the tide is slowly drawing back into the ocean. But as the calm becomes deafening, the seagulls have since disappeared, you have sense that something is not right. So you lift your head up to look around and see what appears to be a wall of water coming right towards you. There isn't a minute to think, yelling probably is all you can do to get everyone's attention, maybe, just maybe, you have time to grab one of the smaller kids close by and then run for your life. Well, running for your life doesn't really mean a lot because it's impossible to escape a tsunami.
Now when I take that illustration out of fantasy and bring it into reality, it would go like this... September 12, 2010, was another great day: I am at the peak of my life, 44 years old, enjoying the American Dream. I am a family person, lovin' my kids, working as a substitute teacher with disadvantaged kids at our local school district, absolutely enjoying the freedoms to be who I want to be. It was a Sunday. So, after a morning outing at church, we all come back to my place for a home cooked meal with friends and family. Although I have a big kitchen, 25-30 people all talking at the same time can be loud, but for me it is exciting. I love watching friends and family enjoy the simple things in life—food and each other. I can't recall who was there that day, but it was a mix of family and friends and definitely my children, except Mindy and Elizabeth who are away playing soccer at Maine Maritime Academy. I am making my rounds to make sure everyone is all set. I know that my face is smiling as I interject into conversations as I pass by.
The phone rings and someone says, "Mom, the phone is for you." I just smile as Ron rolls his eyes...not uncommon. I strain to hear the voice on the other side of the phone say "Mindy was hurt in the game today; she is not conscious and needed to be air lifted to Eastern Maine Medical Center. It is not good. You need to get to the hospital." By this time someone has noticed my face has lost all expression. I am now taking a deep breath. My heart wants to jump out of my chest, breathing has now become methodical, paced, if anything it is the one thing I am in control of. The room becomes silent and I gulp back the tears as I tell everyone what happened. Silence is almost awkward. I have a second to think and then I need to respond.
Caregiving for me began just like that. As caregivers, our lives become all about the person we have been entrusted to care for. So my job as a substitute teacher, gone; my parenting the two children I adopted, gone; time spent with family and friends, gone; Teaching Good News clubs in the local schools, gone. For all intents and purposes, all I had aspired to be evaporated into a sea of caring for my 24-year- old daughter. We're not given a choice, as caregiving is often something we are thrown into and for me it started from the moment she took my hand in the hospital sobbing and would not let go.
One word to describe this time of our lives was "broken." What can a broken mom do? Well, this mom had a new best friend: Google! I knew that Mindy needed intensive care for people with head injuries, but that care was not offered in our area. I began calling doctors, specialists, asking for referrals, meeting doctors, having evaluations, we are finally moving in the right direction. But that too came with a whole new list of difficulties. The care she needed was in Portland, 6 hours from home. I haven't worked since the accident. It takes money to travel, sleep, and eat. She is one of seven children. My husband is already working 70 hours a week. And she can't drive. She needed a personal driver: me. Who else can stop their whole life and care for her? It had to be me. She needs daily outpatient therapies in Portland. How in the world are we going to be able to pay for all of this? The financial struggles were imminent. The physical challenges got worse as she developed a seizure disorder. So just when we thought it can't get any worse, it did. But these challenges paved in our hearts a desire to one day help another family just like ours.
Mindy and I decided to impact our community with love and compassion by starting a non-profit organization called All Things Become New, Inc. It's long term goal will be to purchase a home near New England Rehab of Portland so that people with brain injuries could stay in for long-term outpatient care needs for free. When we are able to buy this home, we want it to be within 1/2 a mile of the hospital so that patients can walk to appointments. So, the two major financial hurdles to appropriate care would be eliminated. Then families could focus on what is most important—healing.
A couple of months ago we purchased a house in the town we live in. It is called our Haven of Rest Home. It is a 6-bedroom home in Eagle Lake, Maine. It will house our new office and offer caregivers a break from their in home responsibilities. It could be the parents of an autistic child, or the daughter of a mom with Alzheimer's. The list is endless for sure when it comes to caregiving. But a mini vacation whether for week or week end, they could stay in our home for free. Many times families with high medical needs can't afford those breaks they very much could use. We have received financial gifts which allow us to begin construction of our office, hoping to be completed by January 1, 2018. But the home itself is up and running.
And then what do you do with down time? We are working on starting two support groups in northern Maine for brain injury caregivers and I have almost completed a book, which I am hoping to publish by March for Brain Injury Awareness Month. It's my personal journey of caregiving nuggets. It will be a small, easy read that I can give out to families struggling with life after brain injury.
I read online, "as much as you want to plan your life, it has a way of surprising you with unexpected things, that will make you happier than your original plan..." I want to impact the lives of people around me for good. My living as a caregiver actually created in me a new revised version of myself. One I like better! So here I am....the new me....and loving life. I have a new vision, a new direction, a new hope and a new purpose: making a difference in the lives around who have sustained head injuries and of course their caregivers.
Feel free to check out our stories and mission at www.atbn.org. You can find us on facebook https://www.facebook.com/mindyloumorneault/ Like and share.