We’ve heard it many times: “2020…what the heck was THAT year all about?!” I’d like to deem a new term for the dictionary: “zoom fatigue.” I really never knew how MUCH time I’d be spending on virtual meetings if it hadn’t been for this virus.
COVID had such extreme plans for our normal schedule, didn’t it? We all just stopped. The world stopped. Although it was stressful, our family found some much needed respite from the hustle and bustle of a normal week. Much of our life prior to the pandemic was filled with people coming in and out of our home to help care for Hudsyn. We attend a multitude of appointments for both kids. And, I’m typically in a car, or on an airplane for most of my day, helping other special needs families with their long-term life planning. Dan and I are lucky to see each other for more than a few hours a day. The pandemic gave us a break. We slowed down and enjoyed a silence we hadn’t felt in a long time. We reconnected with each other and our kids. Certainly, we grappled with the fear of not knowing how this would change things, nor for how long. In the beginning, we watched every news story and online diagnosis tracker. We panicked. We prayed. We drank heavily…because there was nowhere to go and no one to see. We called family as much as we could. We checked in with friends and our village of supporters we’re so used to having in-person, around Hudsyn.
We began 2021 by taking a deep breath, and learned a lot of new things after 2020. It felt good. Somehow in that whole process, we began creating a new way of life we’re now living…and truly enjoying.
We continue to mask and follow the CDC guidance as it comes out. We chose to get the vaccine (Dan received Moderna and I had Pfizer). We repainted, reorganized and redesigned just about every room in our amazing home. Stay tuned for some upcoming before & after posts on how our home looks now. If you follow our YouTube channel, you’ll have already seen some of these.
Update on The Kids
After homeschooling both kids full-time last year, they returned to in-person school in January. That didn’t come without regression, unfortunately. Damek’s math scores plummeted, and he really struggled socially not being able to see his classmates, teachers and therapists. He adapted to the technology quickly, and he worked hard…but nothing replaces in-person teaching for some kids. Damek, really needs the 1-on-1 AND group participation for his learning style.
He finished 2nd grade last week, and we’re very proud of his accomplishments, despite having had three different teachers over the course of 2020-2021 school year. He’s excited for summer because he’ll be getting swim lessons, attending summer adventure camp(s) and starting some new programs that will help him excel next year as a 3rd grader.
Hudsyn didn’t get much therapy outside the home last year. But her nurse, Alicia, continued to come to our house when she could. After all, she has four kids of her own to manage with all the virtual learning while her husband worked full time. We’re thankful we survived that season of extreme isolation. We know how lucky we are to have had her support at all. I was able to keep working full-time, while Dan became Damek’s full-time teacher and Hudsyn’s 4-5 therapists.
Her diet changed significantly during 2020 when we began blending whole foods and moved away from the Ketogenic Diet she’d been on for nearly 8 years. I had a lot of support from other moms and her physician at Children’s Mercy. We developed a system where Dan & I can cook/blend one day a week and give her all the nutrition, calories and energy she needs for her growing body. We’ve seen such positive changes as a result of the blending (and moving completely away from anything packaged or manufactured). She has more energy, she’s alert and she sleeps better…and we have regular pooping for the first time in I can’t tell you how long! More on this in another, more detailed post.
Hudsyn completed 4th grade, which came with big smiles and even some new realizations…one more year and she’ll be in middle school. MIDDLE SCHOOL?! How did my baby get so big, so quickly?
Our 3rd Child: My Business
The absence of my writing hasn’t been because I haven’t wanted to update you all. On the contrary, I just haven’t had the time. I can officially say I have a highly successful financial planning practice that serves over 500 clients in 26+ states, most of whom have children or adults with special needs. I’m in the top 5% of my peer group nationally for what I do…and have been working on a variety of additional certifications that continue to deepen and strengthen my knowledge in this complex area of planning. I’m so thankful for the crowd of mentors, strategic partners and training I’ve been offered this past year.
Becoming an Advocate
On top of these events, I’ve continued my volunteering commitments. I’m an active volunteer at Children’s Mercy through a variety of boards and committees that improve the lives of children and families who take their kids there for care. My most recent project included a ride-along with the Chief Operating Officer to show her the challenges of parking in a wheelchair van.
Next on the agenda is working with the CMH registered dieticians to create a better educational program for families who want to do whole foods blending (like we do for Hudsyn), and improving accessibility throughout the hospitals and clinics. The extra meetings, projects and committees are the way I give back to the place that saved Hudsyn’s life so many years ago…and continues to be a place for her development to flourish.
About once a week, I’m also in a meeting with the Kansas Council on Developmental Disabilities. We’ve been working actively on our next 5-year plan and what that will look like by having statewide listening sessions, and brainstorming tactics that will be effective to further the KCDD mission.
After everything that 2020 threw at us, we continue to be grateful for the small things: time with family, flexibility when needed, and an appreciation for slowing down and being mindful of what matters. We needed the break, but we’re back now. What were your lessons from 2020? How did they affect you and your family (good or bad)?
