The Hope For Tomorrows

Time is a constant subject in our home as our son is always worried about it running out. Sunday afternoons are particularly hard as he gets stressed as the weekend hours dwindle away.  Over and over we will remind him that there is always tomorrow - everything doesn’t always have to happen in one day. The end of the weekend is really just the start of a new week.  But what if there isn’t tomorrow?

These past few weeks I have had a growing and almost overwhelming feeling of how important it is to seize the moments. To not miss out on living or making memories. In my mind healthy tomorrows aren’t a guarantee. So if for instance, this year I feel well enough to travel I should travel because will I next year? Will I run out of time when my body feels well enough to be pushed? I don’t ever want to regret that I did not do something now and then not be able to do it later because my body had other plans.

As I explained my current feelings about this to my therapist last week she made the observation of how similar my own fears of running out of time were to my son's.  Of course she is right and I have thought about her comments often since she said them. Our perspectives are different, mine is on a much larger scale while his is centered around each day. At nine he is not able to articulate where this stress comes from just that he feels it.  Mine however, is rather obvious given that May is the month I lost my Mom seven years ago.  Even on her final day we were so sure there would still be another tomorrow- maybe it would be one of the hardest of her life but there would be one. Except there wasn’t.

I have since grappled with living with the same rare disease I watched her die from and figuring out how to largely move past the fears that I will similarly spiral out of control and not survive.  Thankfully I do not think as frequently about that happening in most other months of the year but it is hard not to feel that way right now. I find myself hoping I can at least live till our son is older wishing he will not feel the loss of his Mom at a young age. I think about all the adventures my family has left to take and all the holidays and birthdays to celebrate together. I must make each and everyone count.

Given the current state of the world this is honestly true for anyone, there is no way to predict exactly what will come next - who will receive a life changing diagnosis, what crazy accident could happen or worse given the unending gun violence in this country when we will be in the wrong place at the wrong time.  Rare disease patients just have an added layer of a what may take away their tomorrows sooner.

I know it is not good to live in fear or stay in this mindset and in truth I am rarely stuck in it but sometimes it creeps in. Instead I know it is better to focus on and be grateful for each day that we do have. Not just for the big adventures but for the daily ones we all forget to remember - for each hug goodnight and each “I love you” we say. For the dinnertime laughter and the joking we share. These are what matter - these are what I remember from my own Mom and why I try to bring joy and play into each of our days.

And I will keep pushing myself and fighting harder to heal as the promise of more time together is what motivates me daily. Because as I tell my son, “the tomorrows will always come” and I will be grateful for each that I wake up to see.