Posted by: sistermom1 | March 14, 2010

The cost of MS

This week, I am learning exactly what the cost of my MS is to our family.  Besides the additional expenses of my healthcare and the necessary meds, my docs insist that I take better care of myself in general with on-time dental cleanings, regular mammogram screenings, and consistent preventative care.  (Can you say “expensive”?)  Although this is good in general, this keeps me focused on my own health, and because my health is less than ideal, it is a struggle – personally and financially. 

Our son just went through the process of applying to private high school.  He was accepted at a school of his choice, but we have decided that on many levels, we really cannot afford to do it.   We applied for and did not get, financial aid.  Now, I am private school-educated, while my husband is a product of public schools. This admissions process has been a real challenge for us to “navigate” (a nice way of saying “discuss”).  It got to the point where we had to postpone talking about it to give ourselves a break and not kill each other.

After a week of prayer with my husband, I have had several realizations.  (Note: He had several as well, but since this is my blog – smile- I am only sharing mine!)

Although my husband and I do not agree on what the ideal next step should be, I know that we both want the best for our kids.  Despite our difference of opinion about private schools, I do not resent my husband about this situation.  I do not think that he should take on another job to earn more money to support this option for our family.   MS  has required him to take on so much, and he is truly a wonderful husband and father.  I am not trying to add stress to what is already a pretty stressful life.

This is the first time that my inability to make money has dramatically limited our family options.  In the past, my salary covered things like vacations, summer camps, and education expenses.  I have realized that this is the first time in my life that I am not able to make something happen that I really want.  I do want our son to go to a strong school, and have a great High School experience.  I want the same thing for our daughter, who will enter Middle School in September.   Because I am not able to drive, or volunteer at the kids’ schools, or contribute towards even a part of the tuition, we have fewer options open to us for next year.  That has been very difficult for me to see and accept.  But I also see that this is about so much more than picking schools for our kids – even though that is important – especially where we live.  It is not just about public vs. private education….

I continue to struggle with issues of control and influence.  In my own life, and where my life intersects with our kids’ lives,  MS limits my ability to make the kinds of efforts that I have made throughout their schooling – at least over the past 2 years.  My mother reminded me that most parents deal with this reality as their kids make the leap into High School.  Social challenges, larger numbers of kids, navigating changing classes and a new building, etc… Add that to the challenges of having a parent with a chronic health condition, and it becomes more than a notion for them as well as for me.

The issue of finances is a difficult one for me to navigate.  I have had a job since I was 16 years old, and have always taken great pride in making my own money.  I do appreciate being on disability income, but earning money this way is dramatically less than what I have been used to making in the recent past.  So how can I value what I do for my family when I have to parent from the sidelines with no real income to contribute to the running of things?  How can I make an impact on our family rhythm when so often  I do not have enough energy to even review their homework or special projects?

MS  has compromised my independence dramatically in the past couple of years.  This has ended up playing a major role in the decision-making around school for our son.  To have him in a new school that is geographically further away from us, and our daughter in a school that is lovely, but smaller than we would like for her, is not an ideal situation for any of us.  Combine that with my not yet being able to drive, or help in any way, at any time, and you can begin to see our dilemma.

To put it bluntly, this situation has really underscored the difference between what our situation is and what I want it to be.  This is a definition of suffering that I really relate to.  This situation also reveals the difference between what I had always planned to do for my children easily (expensive private schools being only one example) and what actually can happen in our current reality.  I don’t mean to whine when we do have access to one of the best public school systems in the country.  I have always enjoyed having options and hate not having them now.

This is my ongoing struggle to win – and to determine exactly what “winning” actually looks like in this (and every) situation that we face together as a family.  I am reminded every day of a single statement by Daisaku Ikeda, recounted by his wife, Kaneko:

You may not always win every battle, but regardless of what happens to you, never be defeated.

This has become my motto as we navigate through this latest stage in our growth as a family.  MS has been very expensive, but I remain determined to appreciate the challenges that MS continues to bring me and my family, and pray that we all become actual proof of the power of never being defeated, no matter what!

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