I have never done any personal fundraising before. This is probably the first time I have ever been deeply motivated by love and yes anger and frustration to do what I am attempting to do.
On some levels I can understand what they are going thru, at least when it comes to the financial end of it and that is another reason why I think I am doing what I am doing. When Jay was diagnosed with CIDP, Jan 2007 and his body was weakening by the day and we realized this was no mild matter, our lives turned upside down. On top of the panic the sheer feeling like the rug was just pulled out from under you and you are literally dazed and confused you have to figure out how the day to day operation of your family is still going to happen. Thankfully we were surrounded by amazing neighbors and friends that helped, our family was 900 kms away at that time.
A big part of the day to day operations in a family is money! simply stated a family needs money to survive. I found myself doing as much research as I could while I was polishing up my rusty resume ( I had been home with the girls by then for a few years). It was obvious that I needed a job and we had some room on our credit cards but there was no endless fountain at our fingertips. Now I have to say that we are EXTREMELY blessed in that both sets of our parents are financially able to help us out and that is what happened but we didn't want to assume that they would and made sure we exhausted our own resources before we asked. What I found was astonishing to me.
There was NOTHING out there for us! with all the years of taxes we have both paid, there was nothing! Due to the simple and down right unbelievable rule that since Jay had not collected Unemployment Insurance in the previous 5 years he did NOT qualify for any re-training program out there. They actually asked ME if I had been on UI in the last 5 years, and as I had due to maternity leave, they said "oh well Mrs....YOU qualify for re-training" as if that is why I had called in the first place! I didn't need re-training but there was a very good possibility that Jay would! His physical body was not able to do the strain of walking up stairs let alone do landscaping or plumbing....his 2 trades. Even one of the Gov't agencies I talked to said to me "wow you sure have done your homework", I knew the ins and outs of it all! The bottom line for any emerg aid was we owned 1 vehicle that was worth more than $5,000 outright. It was our 1 vehicle that actually fit all 6 of us and it was barely worth 6g's. BUT since we didn't owe anything on it, never mind that we were home-owners, or had another vehicle (it wasn't worth $5!) the simple fact that we owned that truck meant there was no help for us. They suggested we sell it.....there was NO bus route where we lived and we lived out of town....try to find a reliable vehicle that fits 6 and can handle 6-7 months of winter conditions for under $5,000! our other choice was to sell it and get a loan for another vehicle but with BOTH of us not working and him with a recent Neurological Disease that was just impossible. Totally frustrating. I remember standing in the bathroom totally at the end of the list of #'s I could possibly find, I didn't know what else we could do. There really is nothing out there for the average middle class family when sickness or disease strikes! In the end it did cost us a lot financially but like I said early thank God we had our parents and the amazing people that were moved and donated to us! (we had some anonymous ones we still don't know who they are...and we are still thankful!!) or we would have lost everything, and I mean everything.
So when I think of Jon and Patti and all they are going thru I can sympathize with them the stress of wondering how all this is going to affect their family and the day to day operations. Running to Vancouver 4 times a week. All the medications Geli is on. The urgent need to make the home as healthy as they can. The fact that Jon cannot work, although the church he Pastors at has said don't worry about it they are making a good investment! how awesome is that!!! needless to say they don't need the financial stress and every little bit of extra will help to ease that stress.
Understanding a little of all this adds to my heart that hurts for them and when I cringe a little of what I will look like with no hair and the nervous butterflies I feel in my tummy and wonder what the heck Jay is going to think of me with shorter hair than his!! and his is pretty short....I just think of that amazing beautiful girl who is taking all this with courage I could only ever hope to have, I think of her dazzling smile, the grace she has, the beauty that is her inside and out, the bravery she has to muster, the pressure on this family, the fear demons they have to fight, the sense of family they are holding on to, the love I feel for all 7 of them....what's a little hair?