Today gets two posts (and no I will not attribute that to an easy work day!)... ;)
As a 25 year old woman that is gene positive for HD, I have many decisions to make. The goals and dreams I had before Huntington's do not go away, but they must be reevaluated, changed, and in some cases given up.
Things I need to consider: career plans, going to college, having a baby, vacationing (gotta work on that bucket list), and retirement saving (for the hubby anyway). Most significantly, I have a HUGE concern over money. Everything I want to do costs money, and I don't have time to save up and work for 20 years before I get these things out of life. Do I give them up? Which goals should I disregard? It's not really fair that I should have to is it?
First, I want to have a child. That is priority numero uno! This of course is expensive and time consuming, but totally worth it. Meanwhile, though, do I follow through with getting that Bachelor's Degree? It would take me three years and could boost my income enough to help pay for my desired lifestyle, but without dreams of retirement and limited time, is that how I want to spend my precious time? I am feeling a lack of motivation to pursue a career that will take me away from the finer things in life (family & fun).
It really makes me refocus my priorities because it seems that perhaps, I can't actually have it all. My loving husband has volunteered to provide for our family and generously told me that I don't have to work. It is a beautiful thing to have that option. Though working in the real world with grown ups and making a contribution to society does have its rewards, perhaps I will settle for a lower paying job that lets me keep my focus at home.
It isn't as though I'm excited to give up pursuing that B.A. And I haven't decided for certain that I will. But what else can I do? I feel I must choose and to me the point in life is relationships with other people and with God. That education isn't going to get me where I need to go as quickly.
Unfortunately there are other complications when HD is involved. My medical care will be costly as this disease is a slow one I will require long term care. Nursing homes are extraordinarily expensive and the government will not help unless you have no money or assets. This means that my husband could potentially be left with maybe half of what we save for retirement. Any pensions or 401ks I have would be spent on my care instead of his retirement. I will discuss this more later as it is a very touchy subject for me.
The point is that there is a lot to consider and plan for. I must plan carefully to get what I want out of life while I can and to avoid leaving a huge mess for my family when I go. I'm going to make an appointment with my doctor to get this whole process started of having a baby. Everything will be figured out in time I suppose.
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