So much to catch up on! So much has been happening from graduations to lemonade stands to 4 hour row-a-thons. Kyle recently graduated from the Air Force Academy and we had a terrific weekend with friends and family who all came to celebrate and fry 7,000 feet closer to the sun. Unfortunately my dad was unable to fly out as he’s very busy at Spaulding rehab hospital. I haven’t seen him since the first surgery, so I was thrilled to finally be with him again. He’s got a nice room overlooking the Boston harbor, and his bulletin board is covered in notes, pictures, medals, trout bandanas, and pug drawings.
The facility is extremely beautiful and brand new, equipped with state of the art technology and equipment. During the day he uses a motorized wheelchair to get around. He steers it by tilting and pressing his head on the neck rest. Sometimes this results in bumping into walls, running over toes, and tipping off the edges of sidewalks. When he’s done with the wheelchair for the day, he is literally air lifted out of it and into bed using a ceiling crane and a body sling. Like those videos of whales getting picked up off the ground and into truck beds.
In bed he watches The Colbert Report and The Daily Show nightly. We feed him his dinner and he swallows a plethora of meds. Sometimes he sits and uses his Tobii- a tablet that uses eye tracking technology to allow him to surf the web, watch YouTube, or send a text. Then the lights turn out and he tries to sleep but it’s very difficult and uncomfortable because he can’t move or position his body how he wants. So he either wakes up whoever is sleeping in the room or calls the nurse to have her push his body on his side, lay his arms out, and reposition his legs and feet.
When morning comes the first item on the agenda is iced coffee. One morning a nurse came to clear dad’s breakfast tray and she almost took his cup, and he told her he would bite her arm off if she did so. After 3 months of requiring somebody else to make you comfortable at night, I guess coffee becomes a life or death matter.
Once the caffeine kicks in, the day is busy. A team comes in to undress and redress him, give him meds, crane lift him out of bed, and send him on his way to physical therapy. While I was home I got to see him walk, which is a really big deal. With the use of a walker and the crane, he walked a whopping 98 feet. This absolutely blew the therapists out of the water. I walked in front of him and watched his face cringe and sweat during the last steps before he collapsed back in his wheelchair.
After that he heads over the occupational therapy, where they push and pull his arms around and try to help him regain some movement and strength in his upper body. From what I saw his hands are completely immobile and so are his arms and shoulders. He has regained strength in his neck and his incisions are no longer painful. His friends who visit him frequently say they notice tremendous progress in his muscle use and general appearance. Last week he could barely twitch his leg or lift his foot, this week he swings his leg gently off if his wheelchair.
Progress is slow, but it’s happening. We’re not exactly sure how long he’ll be at Spaulding, but the longer he can stay there and continue to work, the better. He dearly misses home and the old way of life, but he’s got an incredible work ethic that is determined to get back to (at least) where he was.
Working diligently at his side is my mother, who runs the whole show. I spent two days in her shoes; waking up early to get coffee, brushing his teeth, getting him dressed, walking him to his workouts, aiding in those workouts, feeding him his meals, changing the channels, trying not to cringe as he zig zags with his wheelchair, waking up hourly to reposition him and give him water, and it was EXHAUSTING. She does this all while trying to get our house renovated and a wheelchair van in the driveway, keeping track of two kids and two dogs, driving between states daily, and responding to infinite texts and emails. I honestly don’t know how she’s still alive, let alone pulling this off with a smile on her face.
That being said, she can really only do this because of the huge support system behind us. Dawn our dog sitter has been graciously keeping Nelly and Olive at her house this whole time, even sometimes bringing the dogs to Boston for visits. Good friends and their good kids hold lemonade stands to raise money for dad and to spread awareness about ALS. My mom’s good friend and dad’s old swimming partner Jill hosted a 4 hour row-a-thon and donated money to the ALS association and our family. Ken set up an account and link on this page to allow people to donate to our family to help offset that tremendous costs of ALS. Dad’s friends flew out for Kyle’s graduation to be there to support him and us. The neighborhood and surf club guys are regular visitors at Spaulding and bring dad good food (and the occasional beer) and ensure the party life still exists in dad’s routine. Friends and strangers drop off meals, flowers, packages, and cards on our doorstep to let us know we’re on their minds. If I were to list the good things everyone has done for us, this post would never end.
All of those good people and good things are coming together next Fridayat An Evening of Hope, a gala in conjunction with the ALS Association of Rhode Island. Our friends and their staff have planned an exquisite and what sounds to be a wildly successful event. Dad will be there and is extremely excited, though he does have to be back at Spaulding that night (so don’t give him too much wine!). He and I sat down and wrote a speech, him talking and myself typing, that he’ll deliver that night. I’m warning you now, ladies wear waterproof mascara and guys have plenty of tissues on hand. He’s finally got the chance to tell everyone how this disease has affected him, and what he’s got to say is truly moving.
