To Come to Terms
When you receive a diagnosis, you have to come to terms with what that means for your life.
When you receive diagnosis after diagnosis and on various medications and treatments, there is even more to come to terms with - what the combined illnesses mean for your health and life expectancy, whether or not medications and treatments will work, and if they do, what the side effects might be. Beyond the medical, for most of us, our lives change in myriad other ways.
I cannot work. A simple cold can land me in the hospital with acute bronchitis, in adrenal crisis. A day of activity can land me in bed recuperating for days. Short term memory problems, episodes of confusion, and chronic exhaustion go hand in hand with my diagnoses. I have yet to find a way to contribute financially to my family of seven. In fact, because of health and medical items not covered by insurance, I am a financial burden to my family.
We're poor because of me. We're on state insurance due to the fact that I can't work and insurance costs are too high for us to be able to afford out of pocket. I struggle every month with the need to spend money on things that are medically necessary for my existence when we're having issues paying our bills. Every time I think we finally have our heads above water, another wave of acute illness hits, or one of our vehicles ceases to function or there is a major household expense.
For my family, this is all complicated by other family members' needs as well. Odds are, if one parent has a host of autoimmune illnesses, some of their children will as well. We are still gathering physical therapy equipment on our own dime for daily physical and occupational therapy at home from our 10 year old child with multiple diagnoses. We pay for probiotics and supplements out of pocket and the gas to get us to the many doctor appointments we have each month adds up. Not to mention the convenience foods we sometimes need to purchase when I'm too ill to function, the special things we need to buy to accommodate my physical disabilities, and added cost of having a gluten-free household. Add in another child with autoimmune issues who is still seeking a definitive diagnosis and two high functioning autistic children who have specific needs, and our resources are spread thin.
Nevertheless ... due to my disability, I'm home to take my children to all their appointments and don't feel the need to rush or watch the clock while we're there. In the emergency room late at night, I don't have to worry about getting enough sleep for work the next day. I'm home to homeschool my children, which, given their varying health issues (among other things) is the best choice for them. I am able to, most of the time, make home cooked meals for my family that meet our various allergy and dietary needs, much less expensively than eating or ordering out at celiac friendly restaurants.
And I give back through volunteer opportunities, most of the work for which I can do from the comfort of my own bed. Whether it's making costumes for a theatrical production at Epoch Arts or sitting on hold with DSS for hours for a refugee resettlement ministry, I do what I can to give back. I may not be able to find a paying job that fits my limited and sporadic abilities to function, but I can volunteer my time and talents co-administrating our homeschool co-op and planning Tuesday Night Sunday School lessons.
Coming to terms with my limitations is made easier when I take the time to realize all that I can do and be and give.
Coming to terms with my limitations is made easier when I take the time to realize all that I can do and be and give.
As a person who has grown up with family members with various health issues and disabilities, and who has a husband with both health issues and physical disabilities I speak from the other side of this. I did not view those family members as a burden, I do not view my husband as a burden, we all have our way of contributing. Sometimes the contributions are not financial, that doesn't matter, every contribution has value. Although we may struggle financially from time to time, we are together as a family, our child had the benefit of having one parent stay home to be there before and after school, and when our child began having such anxiety at school that we made the decision to homeschool, we didn't have to worry about not having a parent at home. Many children don't have the benefit of having a parent home before and after school, in fact many children don't have the benefit of two loving parents. My child, and your children, have that. They have a wonderful example of how important family is, how family take care of each other through whatever might come. They have the example of how you give so much of yourself through all you do for them and for others when you volunteer, how even through all of the health issues, you are still looking for ways to help others who need it.
ReplyDeleteAs I write this it occurs to me that 50 years ago it was the norm for one parent to be home, not contributing financially, but still such an important part of the family, contributing so much, 24 hours a day, 7 days a week, with no compensation other than the love of the family they cared for. No one thought less of them for not getting a paycheck, so much has changed in the past several decades, we have come so far in some ways, but when did society decide that if someone does not contribute financially their contributions are not as valuable?
The truth is, in the end the things that are done out of caring, without expectation for financial compensation, from the heart, are truly the most valuable contributions.