"It’s a good thing."
It’s nice sometimes to report good things too. Like Gage is behaving (mostly) at school and that he’s making great strides in coloring, mastering some letters, showing interest in words and how they are spelled. That the Procrit is working so well that Dr. Matter of Fact reduced the number of EPO shots to one. I’m sorry, did you hear me? One. One shot a week, not two. She increased the amount a tad and we’ll learn this week if the new dose is working properly. Which means extra blood work. Bad. But one shot. Good.
Quinn is in her 5th week at our County’s Special Ed School – although I am not sure what the politically correct name is. Since January they have been remodeling the school and have been referring to themselves as Trailerwood. There are a series of trailers connected by walkways offering platforms, ramps and steps, even flushing toilets (good thing). Driving into the parking lot – where the trailers now sit – can be tricky for first timers. Orange cones direct you around a one-way loop, with two groups of trailers sitting in the middle. Buses have a special side and cars have another side. There are temporary shelters for the kids while waiting in carpool. Each morning upon arrival, we’re greeted by smiling employees with walkie talkies to remind you of the one way direction, to let the buses have the right of way, and to direct construction crews.
A couple of weeks ago as I entered I noticed a lot of activity. There were a few trucks, people wearing orange t-shirts, tents with donuts and coffee and signs welcoming the workers. There were extra traffic patrol people waving us through with STOP and GO signs. The volunteers were there a solid two weeks. I learned that Home Depot and several of their vendors have donated materials and workers needed for many areas of the school, including landscaping, fencing, and the playground to name a few (good).
Since we entered the group of people who have special needs children (we have our own handshake you know) we’ve benefited a lot from our friends and family. Some of the things people have done would amaze you…like a friend grocery shopping for us every week for a year and a half, or friends just wanting to give us an extra dinner they happen to have prepared, to some women at church bringing us dinner each week for months, or people babysitting last minute so we could catch our collective breath, or running errands, or helping with the PKD Foundation, which is clearly close to our hearts. And these acts of kindness have affected us from the inside out. They healed the sadness in our hearts and help us see the positive in the world around us. Very good thing.
So when I see something like 100 people that Home Depot and other companies have provided to help the school that one of my special needs kids will benefit from for the next few years, well…I’m touched. And it makes me want to say “please, go to Home Depot and buy a new ceiling fan, or redo your tile, buy a wrench, or pick up some nice plants” ‘cause they certainly support the community and it will directly impact Quinn’s little life (and that’s a really good thing).
I like doing things for the PKD Foundation. It helps me step outside of our medically focused life that can make us sad and do something positive. So when earlier this week someone at the PKD Foundation asked me to apply to serve on the Chapter Advisory Committee for the next couple of years I perked up. There are about 10 CAC members that work with the chapters in their region as a voice with the Board of Trustees and PKD Foundation staff. The really cool part about this is that I would be the only ARPKD voice on the CAC. I don’t think they have ever had an ARPKD “representative” on the CAC. So I’ll let you know if I’m approved to serve. I’m pretty sure Martha was talking about hand-crafted edible rose petals on cakes and the art of hand made centerpieces out of branches from the backyard when she coined the "good" phrase, but if I am approved for the CAC, it would be a good thing.
