2024 in Reflection
It’s funny how I was so ready to be done with 2024, but at the same time am not ready to take on 2025. But turns out the days keep coming whether I am ready for them or not so I finally decided to sit down and reflect on 2024.
There were many hard times, but the joy of the good outweighs all of the difficulty. And that is by choice. I’ve always been taught that we get to choose how we approach our days. I don’t pretend that it’s easy, but rather I acknowledge the hard and then let it go. The practice of yoga has greatly helped me with this approach long before I had kids with a terminal disease. It’s why I still make sure I make it to my mat many times a week. It’s my sanctuary, my safe space, my escape.
My math brain likes to be methodical as I evaluate 2024. So by month, here is the hard and the amazing.
Jan Hard: 1) Traded in Dan’s car (Just like his dad, he has always loved his cars) for a handicap accessible mini-van. 2) Dunky and I flew to Iowa and drove through the worst ice storm for a clinical trial screening. After difficult activities over multiple days, he was dismissed as he could not get up off the floor fast enough to qualify.
Jan Joy: 1) As hard as it was, this handicap van is life-changing! 2) Dunky CRUSHED his math assessment.
Feb Hard: 1) Caleb and I flew to Utah for a clinical trial for 4 days. After many difficult activities, he was dismissed as they found out his growth hormone he was on (we have since stopped) made him ineligible.
Feb Joy: 1) Dunky is still confidently standing!!!
March Hard: 1) A stairlift is installed as we can no longer get the boys safely down the stairs for baths.
March Joy: 1) Caleb and I take on DC for the PPMD Advocacy Conference with some dear friends. 2) Seeing Caleb kneel at Mass. He couldn’t get back up but that’s beside the point.
April Hard: 1) Disney was so epic that it took every ounce of walking out of Dunky. When we arrived home, he had decided that he was done walking, it was just too hard.
April Joy: 1) Dunky’s Make a Wish to Give Kids the World at Disney World. The boys discovered their love for thrill rides and were spoiled beyond belief to make this Disney experience one we will never forget. 2) Dunky and I saw Olivia Rodrigo in Boston, thanks to a dear friend, Molly Brickson. It was the most epic experience and such an easy city and venue for a wheelchair.
May Hard: 1) Track and Field day at school brought so many people to tears. We know it will be better next year, but gosh it sucked this year. 2) Stander for Caleb….more equipment.
May Joy: 1) Caleb and I saw Boy w/ Uke in Atlanta with VIP status. It was absolutely amazing. 2) Caleb’s Make A Wish reveal of his game room. Our wish grantors, Erin and Kayla were an absolute blast and such a delight to work with for both boys.
June Hard: Summer only brings Joy in Minnesota!
June Joy: 1) Last day of 3rd and 4th grade. 2) KKD Gravel Ride. Dan and I took on 40+ miles of gravel. It was so fun to do something so hard together. We are so grateful for our neighbors putting this event on and all the volunteers that make this one of my favorite days of the year. 3) PPMD Annual conference in Orlando with the fam and our community!
July Hard: Summers in Minnesota only bring Joy!
July Joy: Cousins visit from Seattle
August Hard: 1) Camping. We made Dunky’s wish come true of camping in a camper van. It was incredible, but hard. Carrying Dunky in and out of the RV was a huge feat. Getting him in the loft to sleep, an even bigger feat. The things we do to bring joy to our kids. 2) New power wheelchairs for both kids. These things are beasts weighing 450 lbs but allowing them to find more independence.
August Joy: 1) Caleb and I traveled to Seattle to see his cousins. It was an absolute blast. 2) Dan and I celebrate 11 years of marriage! 3) Caleb and Dunky’s first Lemonade stand is a total success.
Sept Hard and Joy: 1) First day of 4th and 5th grade. New years bring on new challenges as the boys needs increase and school becomes more challenging. 2) First day of 4th and 5th grade. Finally the kids are out of the house!!!!!
October Hard: 1) Caleb lands himself in the hospital with pneumonia.
October Joy: 1) Twin Cities 10 mile 2) Columbus half marathon with one of my besties, Michelle Johnson. Truly the best race out there with meaning in every step. 3) Dan and I get a weekend away in Bonita Springs!
November Hard: 1) Dunky insisted on staying in the top bunk while on vacation. Enough said.
November Joy: 1) We spent Thanksgiving in Duluth for something different. Grateful for a Thanksgiving meal gifted to us by Crescent Cove, Keller-Williams and the Gopher Football Team to allow us to spend time together vs cooking. 2) I spent a night in NYC with new friends that feel like life-time friends at the PPMD 30-year celebration.
December Hard: 1) Housing renovation starts to incorporate an elevator into our home. While we have main floor living for the boys, it was infringing on my living space with all of the equipment that has started to enter our house.
December Joy: 1) Dan and I get a night away in NYC! We are SO grateful for our niece and nephew, Maggie and Cole, that learned the tricks of the trade and took on watching Caleb and Dunky for the weekend. We realize at this stage in the game of Duchenne, we need to take up people on offers to help and lean into those that are willing. These breaks are how we find we are able to keep going and serve as full-time caregivers for the boys. 2) We spend Christmas in Florida, our favorite place to be!
With that, we will take on 2025 and look forward to you being a part of that. We love our village and community and know we can not do this alone. So thank you for your support and love.
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