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| Linda and John Gregoire |
As most of us busily prepare and shop for the traditional Thanksgiving feast, we also tend to hurriedly go about checking off the “to-do” list that is a mile long. Sometimes, between the demands of work, family and other community efforts, we can get swept up into all the stresses placed upon us, losing sight of things that we deem important; gratitude and gathering with family (in whatever way family looks for you).
Linda Gregoire of Windham recently shared a letter with her friends regarding her own life as she and her family prepare for Thanksgiving 2017. Although I suspect she does not need an introduction to most of our readers, here’s a little synopsis for those who may be new to the Gregoire family journey.
On December 17, 2007, Linda’s husband, John was diagnosed with Amyotrophic Lateral Sclerosis (ALS). According to the ALS Associations, ALS “is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. ‘A’ means no. ‘Myo’ refers to muscle, and ‘Trophic’ means nourishment – ‘No muscle nourishment.’ When a muscle has no nourishment, it ‘atrophies’ or wastes away. ‘Lateral’ identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (‘sclerosis’) in the region.” www.alsa.org
This hardening and atrophy eventually affects the muscles in the mouth and throat, making the ability to eat for the person with ALS difficult or non-existent. As a result, feeding tubes are put in place to provide the nourishment needed. Five years after his diagnosis, John was required to use a feeding tube.
Linda and John agreed to share her note with our readers on how they will enjoy their Thanksgiving feast in the midst of the challenges ALS presents.
May the following letter provide a reminder to us all, no matter our own individual difficulties, to be joyful, happy and most importantly – grateful- despite it all.
“I was asked yesterday by the caretaker who installed a new tube feeder how we handle holidays that are celebrated with food. We all want to do whatever we can for our loved ones with a feeding tube to make life easier and normal, so I really appreciated her thoughtful question.
The last 10 Thanksgivings we’ve been faced with small incremental changes that we’ve adapted to because that’s what you have to do with ALS. I always say, ‘if you don’t go with the flow, you get caught in the rip tide.’ If anyone has had the experience of a rip tide you know what I mean - the more you try to fight it, the worse it gets. If you trust and swim in the flow, you’ll be safe.
So, this morning after I started John’s feed and he fell asleep peacefully while his tummy was being filled, I realized how at peace he is with his current situation. In the beginning with his new tube, we struggled until we got him on a healthy formula. He still ate for pleasure by mouth, so a bowl of pistachio ice cream was eaten while formula was finding its way into his tummy. He had the best of both worlds.
I think the two saddest days for him was when he could no longer eat steak, one of his favorite meals. That came early on, as it’s so hard to chew.
The next saddest day happened about a year ago when John would sneak a hand cut French fry when Matt [our son] and I ate at Elevation Burger. He choked so bad I almost thought of calling for help. However, once the choking passed he looked at me and shock his head ‘no.’ I asked, ‘No more for now, or no more forever?’ Tears welled in his eyes and I knew - no more forever. We both cried.
The one thing he still can take by mouth and never chokes on is a small piece of communion bread and a sip of “wine” (grape juice) at church and, God willing, he’ll be able to forever.
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| The families' dogs are thankful, too. |
So as Thanksgiving approaches, it made me think how we’ve handled the holiday meal. We gather at my sister’s with as many family, friends and dogs as we can squeeze into her home - which can be 20-25 people and up to 9 dogs.
The food has been mostly grown and raised by my sister and brother-in-law, which is a labor of love. It’s prepared with everyone in mind with oyster stuffing for some and regular stuffing for the rest of us. We all share in bringing what we can, enjoy each other’s company and catching up on life. Then we gather at the table, elbow to elbow and we remember our family that’s with us in spirit and give thanks for those we still have with us to love.
John is seated at the table with his own spot and place card as he enjoys his ‘dinner’ too. He’s the only one allowed his electronic device because it’s for speaking and he’s the self-appointed one to keep track of the football game for the entire table. That’s as important as cooking the turkey.
We chat, pass food, laugh and, of course, we eat.
Thanksgiving Dinner is more about who’s around the table then what’s on the table. We feed our bodies and enjoy the food but more importantly, we feed our souls with love and thanks for all we have.
So, for all our tube feeders, join in the feast and give thanks and feed your soul on love and life. This is what I’m grateful for everyday of the year, not just the days of November. Happy Thanksgiving to you all and God bless you all.” Linda Gregoire
Editor’s note: As we enter the holiday season of giving, please remember to give a financial contribution in the amount that works for you on “Giving Tuesday”, November 28. Give a donation to your favorite non-profit organization or consider giving to John and Linda’s non-profit, Hope-JG. Hope-JG is dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and biomedical research. www.hope-jg.org.
