Our Warrior’s Adventure (click ‘See All’ to read story)
Hello friends and family. Here we begin to share with you Jack’s adventure. Through the non-profit organization Help Hope Live, we are raising money to fund uninsured medical expenses associated with Jack’s Spinal Cord Injury. To make a tax-deductible donation to this fundraising campaign, click on the Give button. Please Note: If you are planning to contribute, contributions are updated on the site every 24 hours. If you donate Anonymously there is no way for us to say thank you!
February 19, 2021
2.19.2021 It’s a cold and snowy February morning. Jack and Gus are asleep and Birdie is up with me.
Jack and I got home on December 11th….I can’t believe it’s already been 2 months…. Jack’s space is nearing completion (pictures below!), PT/OT have hit a rhythm and some great goals have been set.
In PT, Jack has been getting into the standing frame and will be getting into a manual chair next week! He’s also been strengthening his shoulders and biceps and last week, he sat up unassisted (with a PT in front and in back of him) for 1 minute and 30 seconds! Still no triceps firing nor any finger movement, and he still has no feeling below his nipple line. It’s taken longer than expected to get used to this new life.
Jack’s spirits have been down quite a bit, as well as myself, as I have been sick. It’s hard to be away from the place that made everything feel more normal.
It crashes in on you, the longevity of the injury. It’s exhausting. And to top it all off, Maggie broke her foot last week and is in a boot for 6 weeks.
Independence is key to our next transition. Alexa will enable him to turn on and off his tv & Xbox, the lights and the heat. He will finally be able to shower, instead of having bed baths.
These thing will definitely lift his mood and mine too.
But Spring beckons new life, new growth, sunshine on our faces and a new project in the works!
My idea is to plot and create wheelchair friendly trails on our land for all to use. I have contacted my friend, Jill, (she created Kids Movement Project) to help spearhead this project with me and engage our community.
We bought a home in Gorham with 4.5 acres that includes woods and a beautiful creek/river right behind our house. The idea is for Kids Movement Project to make a “project” out of mapping and building trails wide enough for Jack’s wheelchair, through the woods and along the river. The desire is for Jack to be able to spend more time outdoors and to create trails for others to use, growing our community. We are now early (and I mean early) in the planning stages of this exciting project!
It’s really comforting knowing that the love and support is out there. It’s easy to get stuck. I don’t know why I always quote movies and books, but as Dory says “Just keep swimming, swimming swimming…..”
Love to all of you out there
Thank you for continuing on our journey of HOPE
November 16, 2020
“Big Words aren’t scary, they’re big fun to learn. I was taught once and now it’s your turn……” This is from my favorite children’s book (Big Words for Little People by Jamie Lee Curtis and Laura Cornell)
These are my big words….and they are scary.
Quadriplegic is: partial or complete paralysis of both the arms and legs
It’s unbelievable, right? I ask myself so often- like is this for real? I tell people when I go to the grocery store and it’s so shocking that people don’t know what to say. I mean, it is shocking! How the hell did this happen?????
Jack has gained some left arm movement while here at Day Program in Atlanta. But it really is a marathon, not a sprint.
His goals for the 6 weeks (3 1/2 weeks left to go) are:
More independence with eating and drinking
More independence with bathing and brushing teeth, brushing hair
Scratch my own itches
Slide board transfers, so we don’t always have to use a Hoyer lift
Balance, so I don’t fall to the side when I lean
Autonomic Dysreflexia is: a syndrome in which there is a sudden onset of excessively high blood pressure. Seriously, as if paralysis is not enough we have to deal with this shit show!
So basically, anything below the level of injury can not be felt by him, so if the signals can’t get to his brain to tell him what the issue is, AD happens.
It is usually one of the following…bladder is too full or there is a kink in tubing, pressure is somewhere that is causing pain, but he can’t feel it (think remote stuck under your leg, a blister that is rubbing and you don’t see or feel it), bowel is backed up, pressure sores, UTI…….
We have had a myriad of these things happen and boy can they send you down the rabbit hole quickly! I sleep in a twin bed next to him and get up throughout the night to scratch his nose, straighten his arm, turn him from his left side to his right (he can only sleep on one side for 6 hours at a time) It’s madness!
As we roll into this new journey, which has taken us through almost 5 months post injury now, there are so many feelings from all over the place. Wonder, Sadness, Laughter, Loneliness, Giggles, Joy, Heartbreak…..How are we going to do this?
Kip and I switched places for about a month and I’ll tell you, re-entry into the chaos of home was overwhelming. I realized that sleeping in with my littles and doing nothing all day, was the best medicine. Coffee time with Gus in the morning while we watched the birds fly to the bird feeder, checked the weather and read our horoscopes then went for a hike in our woods to the creek. Playing American girl dolls with Maggie along with full spa days with face masks, foot spas and powdering our noses at our vanity. These are the things that matter. Just like my time with Jack being given back, I got time back with Maggie and Gus.
Balance is a hard thing to manage in life. I used to always think I was doing it wrong, that other folks had their shit together and I just couldn’t bridge that gap. But I have some really awesome kids, kids that are strong, optimistic, loving, happy, full of wonder and all around kind humans. That’s something today in this world.
So just when I am scared, Jack makes me laugh, Maggie gives me “the look” and Gus puts his head on mine.
We are all in this together, some days I forget that.
I can’t even explain how grateful we are to all of you. With your help, “Jack’s Lair” is being constructed, we are able to get a battery-powered hoyer lift, a manual wheelchair, pillows for positioning, a ramp for our home and so many other things…..
Sometimes in life you feel forgotten after the initial shock of a tragedy hits, but we feel so grateful to have all of you out there supporting us, coming to our home and building, taking care of our littles and taking care of us. Thank you, we love you:)
Photo Galleries (9)
February 24, 2021
Jack, so good to see you rocking out. I love the plan to build trails for Jack and others to use. Spring will indeed be good! Thanks for sharing your updates. Jack - I'm so impressed with you!
February 23, 2021
So many good reasons to donate but the main one is being human and caring about another in need, so please consider a donation. RS, AUSTRALIA
February 17, 2021
Thank You Help Hope Live for All you do! Best, James DuMont
January 29, 2021
Happy New Year Weeks Family! So happy to have you back in Maine Jack!! Sending big hugs to all! Karen