Jason and I have always discussed and planned our longer term goals and focus in life. We have shared our hopes and dreams and how we envisage our future. I always had drive and ambition and would like the structure of a clear pathway with steps to take, to help us achieve those things.
Since Thomas died, however, I find it very difficult to plan for the future and with that, I have lost that get-up-and-go. Having had our dreams whipped from underneath our feet, I never feel that I want to build them back up, perhaps as a self-protection for fear of losing them again. It is also because I know from our experience that our future is not certain and therefore why waste time planning for a tomorrow that may never arrive or for something that will probably be subject to so many variables that the possible outcomes are numerous.
Thinking back, I suspect this change probably started with Thomas' initial diagnosis of cerebral palsy and the complete uncertainty as to what that would mean for him. Then, after he was taken off the ventilator, we had no way of knowing how long he'd survive, as he'd already outlived his prognosis when the sun came up the following morning. We initially lived by the minute, which gradually turned to hours and then days. Once he was home we still didn't know whether he would last until the end of the week, month, year or longer and what impact that would have on our family unit as the extent of his disabilities became apparent. We had no way of knowing whether we would be going on the flights we had booked to France for us all in two and half months time or the ferry to Jersey the following month. All our plans for our future were on hold until he died and I have not been able to reinstate them.
This proves difficult when Jason likes to plan ahead. In reality, I cannot think about anything more than a couple of months away. I cannot plan for the next six months or year or further still. I cannot envisage what our family will look like, what stage our children will be at, what our lives will be like or what our financial situation will be. One example of this is that I cannot plan for our extension, I prefer to just deal with each practical task and next step as it arises. There is something quite liberating about living for today, but when it comes to planning for our future, it is something of a sticking point.
For example, I have no idea what I might do with my time when Samuel starts preschool, or even goes to school full time. I just don't know. I don't know when these things will happen, what the children's needs will be, how I will be feeling mentally, what our lifestyle choices at the time will be or how any of these things will impact on my decision. I therefore find I have no energy or desire to even consider the endless possibilities. I do know this doesn't matter, and Jason and I often joke between ourselves about it, but it has been a fundamental change in who I am.
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