Our family had a wonderful holiday season this year that kicked off with an extended trip to the Oregon Coast over Thanksgiving week and continued through the month of December with a calendar brimming with festive events, new experiences and a list of must-see holiday lights. We were healthy and managed to avoid hospital stays. And for the first year, Malachi brought an obvious excitement to the holiday. It was beautiful -- all of it!
In the midst of our celebratory month of holiday fun, our family received three truly wonderful gifts. These were three very different types of experiences, and together, contributed so much to our enjoyment of the season.
First, on December 3rd, Malachi was invited to take part in a one-of-a-kind Plushy Reveal Party, hosted by Ladybug House of Seattle. Ladybug House is a nonprofit organization working to build Washington's first family-centered respite home for children and youth with life-threatening illnesses. This respite home would provide community-based palliative care for children and families with the option for end-of-life support.
(An aside for those unaware of the difference between palliative care and hospice care: Palliative care focuses on enhancing quality-of-life for those with serious illness or disability. It is not end-of-life care, though, palliative care can support an individual and their family if and when the times comes to move into hospice care. So, palliative care focuses on quality-of-life and hospice focuses on end-of-life. Both are important, but there is a distinction between the two. Read more.)
Ladybug House also offers unique opportunities for medically complex kids to participate in events and peer engagement activities. (In 2021, Malachi joined a handful of other kids for a virtual "Storytime with Santa" event.) Learn more about Ladybug House at ladybughouse.org.
This winter, after several months in the making, our family joined over two dozen others from around the Puget Sound region for a virtual event where kids took turns unwrapping a special Budsies custom plushy created from their own artwork or a special photograph.
Malachi's plushy was a re-creation of a dinosaur that he painted over the summer months. Freakin' adorable!
On December 18th, Malachi experienced ice-skating for the first time. It was a first time for all of us, as a family, to actually have the option to participate in that type of activity at a public rink.
Thanks to the amazing people at Camp Korey, a nonprofit camp for kids with disabilities, Malachi was invited to take to the ice in his wheelchair. We cruised around the rink together, with Malachi in his wheels and me and his dad on skates. Other kids participated in different ways, on wheels or with walkers or with supported skating. It was inclusive and warm and just what you want every community event to be.
Camp Korey offers year-round programs for children with life-altering medical conditions and their families, free of charge. Over the past 15 years, the organization has served over 35,000 campers. They do amazing things!
In 2020, when the world was in COVID lockdown and our family was living in very strict isolation for Malachi's benefit, we registered to participate in a virtual summer camp weekend with Camp Korey. They poured their energy into making that virtual experience fun and memorable for families. During a very difficult time in all of our lives, they offered a weekend of light-hearted play. I'm so glad we connected with them during that time.
Last week, we submitted our application to again participate in an upcoming Family Weekend at Camp Korey. This time, it would be a camping experience in person, in late-April. We are sooo looking forward to it! (Learn more about Camp Korey at campkorey.org.)
A third, truly beautiful gift came to us in the form of Santa Claus!
The real Santa Clause, who also happens to have the first name Mark.
Santa Mark is a delight! He is kind and warm and as jolly as one would expect of Santa.
We met Santa Mark last year, when he traveled three hours from Yakima, WA, to the Seattle area and made a very special visit to our home to meet Malachi.
And can you believe it?! This amazing man reached out again this year to ask if Malachi would like another visit from Old Saint Nick. (YES! Absolutely, I knew he would. Malachi had been listening to Christmas music and watching Santa cartoons for 6 months! Of course, he would LOVE to see Santa again in real life!)
And it was amazing! We met up with Santa Mark at a park near our home and snapped photos with the whole fam! Malachi played shy in front of the man himself but shrieked with excitement the whole way there and back. It was beautiful.
What a way to wrap up a busy, eventful and unexpectedly surprising year!
2022, you were definitely a trip. Cheers!
When telling people about Malachi's medical complexities, they first exclaim, "Awww...." When a description of the joy, creativity and exuberance that his mom and dad surround and infuse him with, they then exclaim, "Ahhhhhh!!!!" (With a big smile!)