I am not going to lie, we have gone through a range of emotions over the past couple years. However, we would be remiss if we didn’t recognize the blessings.
24 hours after the diagnosis, we attended my aunt and uncle’s wedding anniversary. It was there that we met my cousin’s dear friend, who just happened to be the leader of a Early Onset Dementia/Alzheimer’s support group. Coincidence? Three weeks later, she agreed to meet with us. She told us the honest truth about what the diagnosis meant, what to expect, and what we needed to make a priority. That was what we needed more than anything. She even got us in contact with Eldercare lawyers who have set up a Trust for my husband in order to protect our assets. They didn’t charge us for the consultation. Another coincidence?
We had started the Social Security/Disability paperwork in May of 2013 after my husband lost his first job. He spent 2 full days at their local office. It was lengthy and intense. After appointments with 3 difference doctors, it was determined that his medical conditions were not severe enough to collect assistance. As a result, he returned to work in November of 2013. He lost his second job in April. The good news, is that the paperwork had already been filed. Therefore, we only needed to reopen his case. The bad news is that he had already been denied twice. This means that we are still waiting for a Hearing. This has been by far the most frustrating part of the past 18 months. The blessing is that we have qualified for a Compassionate Allowance as a result of dire need, so we are scheduled for a Hearing in February. Thank God for a “fast pass”. I have to wonder how long we would have had to wait without it.
The good news is that I have a good job and good insurance. I get 2 checks a month and one pays the mortgage. This is a good thing. We absolutely love our home. It is private, we have an amazing view, and it is small enough to handle, yet big enough to house our family when they are all home. It is cozy and we get a lot of enjoyment out of the big stone fireplace in our living room. The bad news is that one check doesn’t pay all the household expenses. Not even close. This means that we rely on the help from others to keep food in the cupboard since we don’t qualify for any state aid. We have had to swallow our pride and accept food donations and we eat a great deal of “pulled” food that is outdated but still eatable. We have also received generous money donations and gift cards that we have been able to use to keep us going. It is through the thoughtfulness of others that we are able to keep eating and we thank God for those gift givers every day. It is a very humbling experience to rely on the help of others and we hope and pray that we can pay it forward once we get our feet under us again.
The bad news is that my husband physically hurts every single day. The good news is that he is motivated to keep busy. He is allowed to drive short distances, so has been able to help my aging parents and my brother and sister-in-law at the farm. We lived there for nearly 25 years, so it is very familiar and they keep an eye on him. It gives him a reason to get up in the morning and to keep moving because there is always a “to-do” list waiting for him and he is happy to help. They understand his short comings and don’t mind reminding him, and following around behind him. This makes it possible for me to keep working and it is a very big relief to me.
Most of the time, when I explain our circumstance to people, they are compassionate. This is not a little thing. Even the lawyers have allowed payment arrangements. My parents have helped us a great deal, and without them, we would be living in a cardboard box behind the barn. At one point, I entertained the thought of staying in my classroom. It would be warm and we could bring sleeping bags and sleep on the mat. There is a microwave in the teacher’s room and we could wash up in the sink in the bathroom. My husband could volunteer during the day. We could probably make that work for a while, but I suspect the administration might frown on it. I am thankful that we haven’t had to resort to that.
I am thankful for the opportunity to supplement my income with Summer School and committee work. The good news is that we were able to be fairly self sufficient during the spring through mid summer. The girls bought seeds for Father’s Day and we have thoroughly enjoyed fresh vegetables from the garden.
Little things like firewood delivered early in the summer, lawnmowers that run, vehicles that are reliable, a house that is warm, food in our belly’s, understanding bill collectors, a stable job, insurance that has met it’s deductible, healthy children, family members, friends and coworkers that care and encourage us with contributions and prayer, are not little things. They are big things and today we are so very thankful.
This thing is not going to beat us. It is going to stretch us and strengthen us. Today we are gong to enjoy the fireplace, light some Christmas candles, watch the snow pile up around us, and thank God for the BIG things.