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4/11/03 A Mountainous Bump From:
Rob Payne <rob@everydayisprecious.com> A Different Call Sometimes a bump in the road is pretty big. Sometimes it turns out to be a mountain that takes you to new vistas – raising you above all the normal scenery - letting you see a bigger picture. Because Marcy could not be left for me to meet personally with Creative Works, they told me Thursday 3/27/03, during a conference call with owners, that I would have to leave the company. I can’t blame them, they’ve been supporting me for a long time. They have given me much more latitude than I could have ever have hoped. Understanding the dynamics of the company, I had to agree with the decision. Still, it was the best job I ever had, working with some of the finest people in this world. I thank them for letting me be part of their success. Today’s Realities But our family still needs food, clothing, health insurance, and shelter. With the ventilator, suctioning her lungs, her supplement schedule, and other tasks, I now spend 15 to 20 hours a day, 7 days a week, actively doing something for Marcy. (Click here to see my daily schedule and log sheet.) So, I have a "job" and it’s what I want to be doing, but it doesn’t pay. And, as the only person in the house trained to troubleshoot the ventilator, I can’t leave the house to go to a job interview, much less work. What are we going to do? We’ve considered lots of options. We could hire someone to care for Marcy. Marcy’s current medical needs demand a registered nurse. To hire an in-home nurse would cost almost as much as my take home pay – and Marcy and I wouldn’t get to each other as much – so we wouldn’t be better off financially or emotionally. Even if the cost of a nurse was covered by insurance, with everything at home the way it is, I wouldn’t be able to devote the time necessary. There will still be doctor visits, days the nurse is sick, days when I just needed to stay home. Another choice is to work from home using national companies like elance – or local companies like Offsite Works – to help me find project work to do from home. But, again, the time constraints are still there. We refinanced our house to an interest only loan, sold our rental property and paid off the car with the proceeds, will sell the RV, and have taken other steps to minimize our overhead; but we still need cash coming in. Virtual Caregiver These were the thoughts going through my head when our neighbor, Audrey, came over. She told us (as she had before) that Marcy is an inspiration to her and to many other people. Audrey’s family gives to selected charities and missions on a monthly basis and suggested that Marcy’s inspiration is a mission of sorts. She would like to contribute monthly to help me stay at home as Marcy’s caregiver. She felt sure others would feel the same way. She said that if everyone inspired by Marcy contributed $50 a month, or even something less, it would be enough for anyone to live. Marcy and I are driven, hard working people who have always thought of ourselves as pulling our own weight. Marcy sold pot holders door to door when she was nine years old. I cut grass to buy my first car at 15 – 6 months before I could even drive. But the last three years have taught us that we haven’t earned anything: all our blessings are a gift from God. And we believe that Audrey’s visit was God giving us permission to ask you for help. We are asking you to pledge an amount that you feel comfortable contributing monthly. If you can’t give, that’s OK. We know how that is. If you can give, any amount, we will appreciate it. As with all correspondence, we’ll keep your name and contributions confidential - unless you want it otherwise. If you can’t give, but know someone who can, please direct them to this site or click here for a printable version for friends who are not wired. If Marcy’s healing is an immediate, full recovery, you will be among the first to know and we will return any funds not used. If Marcy’s healing continues as a “baby step” process, we will keep you up to date on progress. If your contributions exceed our needs, we will put the surplus in the bank. If Marcy still has medical needs after our COBRA insurance expires in 18 months, we’ll use those funds. If her medical needs are met, making the money excess, we will donate to another ALS charity. For epledge, click here; for paper pledge, click here. Helping Others We belong to several email groups with dozens of ALS and lyme disease patients looking for medical answers and swapping stories on the Internet. We know we are truly and unduly blessed. No one that we communicate with has as strong a support group as we have. Using you as a stellar example, we will package this "Virtual Caregiver" idea and give it to other people in our predicament. If they need help executing, we may help them do their mailings, establish websites, and other communication tools. You never know, helping others like this may become our full time job. More Good News In addition to being able to stay with Marcy, this bump in the road makes me change my email address. Maybe I won't get as much junk mail - for at least 24 hours! Please update your address book for us - the new email address is rob@everydayisprecious.com.
Whether you are able to give financially or not, we appreciate your gift of prayer. It keeps our family looking in the right direction. Rob
& Marcy |
