A Lot of Tomorrows

59296049582__2F17A6B7-ABBC-482E-984C-278419CFE2B5

We enjoy today and hope for a lot of tomorrows.

That’s how I answered a question I was asked yesterday on one of my Facebook pages. The person was asking how to live knowing that there will likely be a “future loss”.

You might think it was a cruel question for parents with children with ALD – or any special situation leaving their child medically fragile, but trust me – it’s a question that we all have struggled with.

The pain of knowing that you will likely outlive your child and the fear that you won’t – who, other than you, can you trust to care for your child? You worry about a simple cold leading to a fever and then a seizure. You worry about what you might find when you open your child’s door in the morning. You try to plan for a future, but limit the future to a few years, not decades. Worried that being too greedy might somehow jinx things.

Everyone worries about their children — typical and fragile. Anna has no underlying conditions, but we worry about her making poor college choices that could put her in danger. We worry about her traveling alone, working too hard, falling asleep with a candle still lit. The other night I woke up at 3:00 am and spend two hours worried that we had somehow pressured her into following a career path towards medicine (I called her in the morning and asked if she felt pressured,  “You’re nuts, but I love you” was her answer. 

Everyone worries about their children, but the worry about special/fragile children is more profound, because IT IS more real.

Despite all the worry, your special/fragile children eventually teach you not to waste time with too much worry. You need to enjoy today because tomorrow is not assured. You need to slow down and enjoy the sunsets, the song playing on the radio, the newest episode of Impractical Jokers.                       .

I’m not saying that I never have moments where fear/despair/dread/depression take over. I bargain with the universe. I yell and cry. But, then I remember my role in all this is to help provide Jack the best life possible. I get up, wash my face, move forward and enjoy today.

The parent who asked the question yesterday was new to this life. It will take some time, but I know they will find their footing and it will be their special/fragile child that will lead the way.

The fact is folks —  we are all fragile. We are all going to die. None of us are assured unlimited days. 

Our family tries to enjoy and appreciate as many moments as possible. I encourage you all to do the same.

Love, Jess

8 thoughts on “A Lot of Tomorrows

  1. As always, your words speak to my heart. I have felt every ounce of this. This life is such a whirlwind. There is love, there is beauty, there is crushing pain, there is pure madness………. I am not the same person as when I started this journey. Hell, I’m not the same person I was before this journey. One thing I know 100% for sure, this life would have been nothing without Dalton. I am so grateful for every single one of those eleven years. Every smile, every laugh, every tear, every struggle, every pain….. I wouldn’t trade it for anything in the world. Much love to you and I am so glad our paths have crossed 💙

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s