It’s 9 am and I already want a drink. Kenedi woke up at 430 am after I got only about 4 hours of sleep. Kendal is up but screaming for her iPad and Teagan is hiding in the corner hoarding it. We barely survived breakfast and remenents of the peanut butter toast are now strewn about. The toy room looks like a bomb went off and Daniel tiger is blaring on the big screen. I cannot help but think “is it nap time yet?!”

And I find this happening every day. Twice a day. Before nap and before bed. I joke that nap is the second best part of the day and bedtime is the first. But usually in the silence that FINALLY comes around 9 pm, the guilt sets in. Did I manage my time wisely today? Did I stop and enjoy the little things? Did I soak up Kendal’s voice enough? Or tell Teagan I loved her enough?

I feel guilty for wishing my day away. This guilt has happened before when the girls were healthy. I would feel bad wishing for a weekend or wishing for something fun we were doing in a month. Wishing time away was hard but wasn’t so terrible. It didn’t make me feel like a bad person.

But now? Wishing time away feels completely wrong. Knowing Kendal’s time is limited I feel like I need to spend every waking hour cuddling her and playing with her and telling her I love her. But that’s not realistic. What’s realistic is that I’m tired. She’s tired. Kenedi and Teagan need things from me. Actually, Kenedi and Teagan need to go back to daycare to get a routine. I find myself, daily, counting down the minutes for nap so I can have a second of peace and maybe grab a coffee. And it sucks.

But in the same thought of wishing time away, I wish I had more.

More time for hugs.
More time for kisses.
More time for “I love yous”.
More time to record her voice.
More time with her siblings.
More time to laugh.
More time to love.
More time for life.

When you have a child who is given a terminal diagnosis you realize more than ever just how precious time is. To some I’m sure it seems odd to think that knowing your time, or your child’s time, is limited is a blessing but I’m here to tell you it is. Since learning there are no other options for Kendal I feel like we have used our time more wisely. Yes, I still can’t wait for nap time, but I also soak up all the little things. The cuddles and the kisses. I take extra videos and photos to remember the joy I find in these chaotic moments. Knowing that Kendal’s time is limited makes me appreciate everything even more than I did before. And when I think about Kendal’s time with us ending, and it gets hard to breath, I beg for one more day. I beg for more time until I remember that no amount of time with her (except forever) would actually be sufficient. And I turn that pain and agony into gratefulness. I know that we have been blessed with the time we have had with our sweet girl.