This past week was busy and eventful. Elma Regnerus followed me around for part of the day on Tuesday. She came along to NPCC, and took photos of Janneke in her physiotherapy session and Rachel in her preschool program. We hope to compile the photos into a story that can be seen on the web, but I have not yet made the time.
I did get a little side-tracked in the last seven days because both Rachel and Janneke contracted a fever, a virus, and a double eye-infection. They were not contagious for our first official AppealforWheels event on Saturday, but the day itself was only a brief reprieve from the fevers, pain, and sleepless nights. Poor girls! They are slowly mending as of this afternoon.
Last week, we had a technician visit our house from a local vendor specializing in medical/ accessibility equipment for the home, particularly ceiling tracking. To apply (or re-apply) for funding, you need several quotes from various vendors. (I am adding his quote to the others as I re-apply for funding.) Check this link for an illustration of ceiling tracking.
For my Star Wars friends out there, doesn't this photo look a little Senator Palpatine-ish? The specialized bath seat standing behind him gives the impression of a robe, or so I thought. If only we and our care team had Jedi powers to lift Rachel and Janneke, then the tracking wouldn't be necessary.
This past Saturday (June 11) was definitely the fun part of fundraising for our van. The afternoon was spent on the waters of Hamilton Bay, with maybe five drops of rain at most. It was exciting to see so many friends and family come together to celebrate with us and support us with our van fund.
The day included a jumping castle, face painting, awesome treats (thanks Van Houte Coffee and Spring Water Ice among many), games for all ages, amazing music, and a great place to explore. A huge thanks to our friends and family for organizing and leading this event.
Check out the first draft of our van - thanks to Jim Koorneef, Rhoda, Bernie and Donna. As soon as it was set up, Emily, Aleah, and Sophia were eager to try it out.
One of our VON nurses came along and did her share of explaining the girls and our situation to anyone interested. We had a number of families stop in who did not know us but saw the bouncy castle; curiosity brought them in further.
Matthew DeZoete and bandmates added to the festive atmosphere. Check out this link for info on him. (Yes, that's brother-in-law Johan DeZoete on vocals and drums.) We have listened to them perform at various venues in Niagara and Hamilton... so this was a treat.
And soon to be added to Matthew's bandmate list, our nephew Caleb. He certainly brought emotions to the surface for many of us as he very sweetly sang "You Are My Sunshine" to Rachel - though she slept through it. Caleb, his parents, and friends provided music after Matthew's set. Also a treat for all.
The not-always fun part of fundraising is the emotional journey we find ourselves taking, now that we have opened up our life and hands to our greater community. When people give, it is both humbling and amazing. We will try to thank those we can, and for those who give anonymously, we promise to LIVE thankfully, giving God the glory and paying it forward when we can.
We are not begging, but sometimes those feelings of being vulnerable in the appeal seem nearly as humbling. In the last few days, we have received some very significant gifts of money for our family. This huge jump in the amount of money raised has challenged and blessed our family. It has been an emotional couple of days; though life has often felt beyond our control, God has promised to be faithful, providing for us when we least expect it. Yep, that makes us cry.
At the same time, we were recently turned down by March of Dimes for funding for ceiling tracking. Apparently our family does not have significant need for tracking - as their letter states. We were puzzled by this, especially because we have been advised by our NPCC team and CCAC case manager to put this in the home, but after chatting with our doctors at Mac, we learned that many funding sources will come to your rescue often only when you are at a crisis point. I don't think I want to know what that crisis point looks like.
We will continue to seek other sources of funding, but at the same time, we are well aware of how our community desires to support us. This brings relief.
We are blessed and encouraged by the letters and gifts of support from our extended community. In addition to the official events from the website, there have been other informal but equally appreciated opportunities of care: Jim and Joyce Koorneef's anniversary celebration (in lieu of gifts, our family was the recipient of well-wishes), and Bernice (Ella's mom) is donating her portion of all her Norwex sales for the month of June to us, to name just two.
We look forward to using the amount raised to provide better care for our family - a wheelchair-accessible van, and if there is money available, home modifications as well.
In the meantime, Rachel finishes her preschool program this week. She was not well enough to attend the program today, but I hope to bring her for her last day on Wednesday. The program has been amazing for her, and many new connections for both Rachel and for me have also been created.
Janneke will continue with physiotherapy through the last week of June. For July and August, we will take a break from NPCC - or they will take a break from us!
Emily and Sophia (and Ralph!) are counting down these last two weeks of school. Yes, MN friends, we are still in school. Crazy, eh?
At the end of the month, Rachel and Janneke signed up to run the 10K for the Grimsby Peachbud. They will need a push, so I will go along with them - and coach Fraser. Who else is running?
Peace for your week.