“Who’s around the table is more important than what’s on the table.”
By Guest Blogger Linda Gregoire
By Guest Blogger Linda Gregoire
I was asked yesterday by a caregiver of 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 haha.
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 second was about a year ago when he would sneak a hand cut French fry when Matt and I would have an Elevation Burger . He choked so bad I almost thought of calling for help. 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 and 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.
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/ raised by my sister and brother in law which is a labor of love . It’s prepared with everyone in mind ....oyster stuffing for some and regular stuffing for the rest of us 😉. We all share in bringing what we can . We enjoy each other’s company and catch up on life . Then we gather at the table , elbow to elbow , 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 that has his electronic device at the table 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 haha . We chat , pass food, laugh and oh yes 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, 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 .
NOTE: November 28th is Giving Tuesday. If you’d like to support the work of The Hope-JG Foundation supporting families with ALS this holiday season, please donate at: hope-jg.org or by starting a campaign choosing us as the designated charity. Happy Thanksgiving!