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!
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:)
September 23, 2020
Sept 23, 2020
It’s hard to believe we have less time than more time here at Shepherd. Kip arrives on Friday to do the family training….I don’t think Jack and I have ever been more excited to see him! We are lucky, Kip and I, that we created these tiny beings who have taught us so much about love, family and hope.
I am guessing that family training will be a bit of a shocker for Kipper…..the first night here, I said to Chinwe, our night PCT, “You’re going to do WHAT to my kid???” I had never (probably like most of you) heard of a bowel program.
We have learned so much about the human body during our stay here. It’s truly fascinating.
It’s like one of those things, when you drive by a medical supply store or a Spinal Cord rehabilitation center and somewhere in your brain you think about it for a minute, but since it’s not your everyday life, it’s a fleeting thought.
I am happy to say that I am now the proud owner of a blood pressure monitor, a pulse ox and a set of those flashlights that hang around your neck;).
On top of what I have learned from the experiance so far, now I realize that I am just like anybody else who needs to concur a fear. It’s ok to be scared. Lately I have been thinking about fear. I think fear is mostly due to the unknown. I remember when I was pregnant with Maggie and I got a call from our doctor…she told me the amnio had come back and Mag would have Down Syndrome. It was scary only because it was unknown. But once I started learning it became less scary. Knowledge really is Power! Thank you, Thomas Jefferson!!! I finally get it.
This journey has taught me that we all have fear, but now I realize, it’s ok, and that it’s ok to lean on the relationships we’ve built over our lifetime and the new ones that are just blossoming.
Also, we have been extended to a discharge date of Oct 20th!!!!
4 more weeks of Inpatient Awesomeness!!!! Then it’s Day Program here at Shepherd or Back to Maine!
…..Oh and did I mention…..Jack’s left arm is joining the party:)
Love you all
Photo Galleries (8)
November 18, 2020
We have been amazed at the determination Jack has shown and the progress that he has made so far. We wish him and his wonderful family all the best as they soldier on! Janice & Tom Huang
November 18, 2020
With admiration of Jack!
November 17, 2020
Dear Jack and family Hope is the only thing stronger than fear. May God be with you all during this time. Sincerely Karen ( Wick) Dworzanski
November 17, 2020
"I never had any friends later on like the ones I had when I was 12. Jesus, does anyone?" Sending strength & love, Wendy, Mike, Violet & Liam