Change is the Only Constant

Written by Cammie Parker

It's hard to believe that almost 4 ½ years have gone by…  we have all changed so much.  Every one of us reading this has…. I sometimes wonder where and what I would be doing if Jack didn’t dive into the ocean that day, but then I also sometimes wonder where I would be if I didn’t drive to Key West with my friends when I was 22….so many paths that lead to different stories.

I wonder if every chapter that we go through was always going to happen, no matter what path we took…. maybe they would’ve just been in a different order.  Who knows…?

I realize that no matter the chapter, every single one has hope and wonder at its core. 

So, this next one will be no different.

Lots of new things are happening in our world!!

We adopted a pup named, Sunny!  She is a 5-year-old bottle of magic.  She has brought smiles, giggles, cuddles and tons of outside play!  Her energy has brought the kind of therapy that you can only get from the love of an animal.  I didn’t know this feeling, I never had animals growing up, but I get it now.  Sunny is amazing.

Maggie and Gus are going to Gorham High School and Gorham Middle School, it’s been a fantastic and hard experience, but the support at both these schools is something I could have only dreamt about!  Maggie’s favorite parts are riding the bus and doing her jobs, and Gus’s are Art and lunch/recess!

Jack is embarking on that next chapter I was talking about above.  He is enrolled in the Gorham Continuing Education program to get his GED and wants to take a few college classes to figure out what he wants to do next.  Physics and mentoring are the words on the street.  We talk extensively about the knowledge he, and I, have gained over these 4 years and how we can spread it to others in those first moments of trauma.

Jack has also been asked to join the advisory board for a new all accessible facility being built here in Maine. Sturgeon Place | 3iHoME  His knowledge of adaptive technology will be shared to help streamline some of the processes.

And….Jack wants to learn to drive! Which is exciting, but a little nerve racking for me.

I am so proud of him for looking forward, as we all know how hard that can be.

Jack also continues to do some form of therapy 6 days a week. 

Project Walk Boston  He is working mostly on core, balance, leg, and hand movement. Moving and strengthening his muscles will allow him to advance faster when the next step is available!

His main focuses are core stability, regaining motor function for upper body movement, muscle re-education, training neuropathways to connect, bone density health and weight baring activities including kneeling, standing frame, seated posture, and work on the total gym.  Project Walk, the people and therapy, have been one of the biggest and greatest motivators for Jack to keep looking forward, continuing to get stronger and start thinking about life in a different way. 

It is only an hour away from us, so 2 days a week we travel South to Project Walk!

Back Cove Personal Fitness Mitch has been coming to our house 2 times a week for 3+ years now.  Not only does this strength training build Jack’s upper body and core, but it’s also the genuine connection they have, and Mitch has been one of the key ingredients for Jack’s mental and emotional growth.  My favorite part is when Jack’s friends come over on “Mitch days” just to hang out with him too, it’s a real bond that you hope your kids will find in a mentor/friend.

StretchLab Oak Hill We added this therapy 2 times a week last December.  Kevin and Jack hit it off instantly when they met for the first stretch!  He is fast becoming another mentor/friend who helps motivate Jack.  Kevin has been able to help Jack overcome timidness around stretching his neck and the benefits of it are undeniable.  The pain and tightness in Jack’s left arm has pretty much disappeared.  They are also working on stretching out his Achilles, which is a slow process, but when he gets back up on his feet, it will be worth the time it takes.

I have also been using the Thera Gun on Jack’s legs a couple times a week to combat spasms and that works wonderfully!

Our kid still isn’t ready for any type of unproven interventions, although the research and statistics are looking brighter every day, he is adamant about waiting until something is 95% effective.

He’s smart and building his strength and growing as a young man.  Growing is right!  He was recently measured and is now 6’4”!  He’s grown over 5 inches in the last 4 years!  We have ordered new parts for his power chair to lengthen/widen the seat plate and backrest, as he is only allotted a new chair every 5 years via insurance, so we have one more year to go.  The chair we are looking at is the Permobil F5 Corpus VS.  This chair is so cool and will allow him to independently stand whenever he wants.  This will help with blood flow and mobility!

We are fundraising again, with the hopes to keep all these therapies (physical and emotional) in place so Jack can get further in his mobility, independence, and goals.  Currently these therapies are costing about $65,000 a year ($5500/month) out-of-pocket, as they are not covered by insurance.

Fundraising goals beyond those needs listed above include:

• Medical supplies not covered by insurance-including, hygiene supplies, posture supplies, adaptable silverware, and air pressure mattress control, to name a few.

• Retrofitting for our the pool. This would include steps for a 2-man carry into the pool, a ramp for Jack to get into the pool area and a heater which is necessary to regulate Jack's temperature, which can not be done on his own.  He is ready to get back in the water and try therapy, as well as hang out with everyone in the summertime! (Mitch-his personal trainer-has a background in water therapies)

• Retrofitting for our the kitchen. This will allow Jack full access to the space, consisting of widening the doors, building a height appropriate eating area and counter to create opportunities for some independent self care. I’ve always explained it as….” imagine navigating a motorized, reclining chair throughout your house”!  This kid can maneuver like a ninja, but more space is needed.

• A new manual wheelchair to replace the one he has outgrown.

• Vehicle modifications for him to learn how to drive.

We are so grateful to everyone that has donated to Jack’s Help Hope Live platform in the past, all these donations have gotten him to where he is today and the future, he is seeing for himself now.

I am excited about the next piece of our journey.  I know it will be sprinkled with hope, wonder, perseverance, and love.  Just like my kids!

To donate, please click Jack Weeks Help Hope Live Fund.  Thank you to everyone out there continuing to follow this uncharted journey with our family.

And a shout out to these big kids, Kaethe, Taesu, and Cooper. Love!