The length of time in between blog posts definitely directly correlates to how well Riley’s health is. The closer posts are together, the more we have going on, and want to keep everyone updated. The more stretched out time there is between posts, means he’s at least somewhat stable and we don’t have too much to report. In the past year, Riley has managed to keep his dramatic hospital trips to a “minimum”, started and completed (all day) kindergarten, and is now a very lengthy 3ft 9in tall 6-year-old.
Riley absolutely loved going to kindergarten. Going from 4 days a week 2.5hrs a day in preschool, to all week long, and all day long was a big adjustment. Probably more for us, me in particular, than him. Just from a logistic standpoint of his care, lengthy time sitting up in his chair, and being away from home for an extended period of time. Took some getting use to, but so worthwhile. All you have to do is mention school to him, and he lights up. We can see some positive changes in his cognitive and understanding of his surroundings, his social emotional skills, and the pure love and friendship that he had for his classmates, and vise versa. I got to join him on their walking field trip to the library in May, and oh man the love his buddies have for him was so obvious, made this mama very happy.
A few years ago, we had to move his bedroom down to the main floor, due to carrying him up and down stairs just became too risky and dangerous. But we live in Snoqualmie, in a home that’s raised an entire floor from our driveway. How do you easily fix that? Certainly, we were not about ready to convert the garage into his bedroom, have him basically trapped in one room, let alone there’s no direct inside access. Yeah, wasn’t even a thought. We thought for awhile that we could sell and find a rambler, since we have decent equity in our home…. but the problem is we’ve fallen in love with the Snoqualmie Valley and didn’t want to move too far, so “the right” pickings of homes was very minimal. Soon discovered unless we had more money and built a home, it wasn’t going to make sense.
That’s when the plan of home renovations started. Requiring a refi on our mortgage we’ve been able to paint the exterior, get an exterior lift, extend our front porch and redo the front stairs, a lot of “smaller” outdoor & indoor projects, make a down payment on van that will be converted for his wheelchair (at some point when we “find” that $$), and finally redoing our back deck neck week. Yayyy for having that done before summer is over and we can enjoy the warm weather and BBQs with family. And I’m not one who understands, or cares much to, home projects. With the craziness of our lives, that’s just one more thing to figure out how to juggle...and the lift especially is very specific and needed to be done to safely get Riley in and out of the house. My dad has always been a good handiman and has tons of experience with contractors from years of owning his own business. And he retired from his line of work last year...so Super Pop to the rescue in coordinating contractors and actually doing a lot of labor himself to help try and save some money. Riley’s going to ride the school bus next year for first grade, man will it be nice just to load him into his chair, take the lift downstairs, and get on the bus...and it doesn’t have to be ME doing it (even though it will be most of the time😜)!
Riley isn’t a kiddo that just anyone can care for and do things for. He has so much going medically, extreme physical restrictions, and we don’t know how slow or fast his disease will cause new “issues” to pop up. Having a child with a degenerative disease has caused us to find our inner strength and lean on those closest to us. We’ve lost some people along the way, but those who truly matter “get it”, or as much as they can, and are always there for us.
And that includes our parents, not only because they love us and him dearly, but they’re the only ones we can actually have take care of him when we’re not around...unless he’s in the hospital, which we just don’t count. He can’t do things himself, needs such close eyes and basically a “trained Riley nurse”, to keep him safe and healthy. I don’t know what we’d do if we didn’t have my parents close by and Chris’ who come up all the time, and sometimes for stretches of time. Might pull my hair out...
But this week is a prime example. My parents are going on vacation for basically two weeks. And I can’t rely on them to help with Riley so I can go into work. So what do I do? Improvise and am very thankful my organization is so understanding. So Riley gets to come with me into the office multiple times, and to two of my weekly team meetings. He mayyyy be a bit of distraction for some who will be excited to see him😋
So life is a bit crazy over here, juggling chaos, leaning on those we need, but we’re figuring it out as we go along. As do most parents, our journey is just different than most. It is what it is and we wouldn’t have it any other way. ❤️
