Small Victories

Today is not a good day. Zoe is very sleepy and fussy. I just fed her a lunch of jarred baby good because she does not have the strength to chew right now. I held her head up with my left hand and shovelled food with my right. As I held her forehead, I realized she has a fever again.

Some days are better than others.

It has been six and a half weeks since Zoe almost died.

Six and a half weeks of constant monitoring and constant worry.

It's beginning to take it's toll.

Zoe's lost weight. She's lost muscle mass in her legs and they are contracted more than before. What does it all mean?

We went camping last week and had to return home after a day. Zoe usually loves camping but was having a really hard time. She also started having a reaction to the tape holding her PICC in place. So we had to come home to take care of that.

While we feel disappointed, frustrated, sad, and angry that we did not get the vacation we desperately need right now, we recognize that we had to try.
Because this is the way we want to live our life- finding the positive moments amidst all this negative.

Which brings me to writing this post.

Someone asked me what I want to do to take care of myself during all of this and I knew the answer right away- get a massage, exercise, take a long, hot bath. Unfortunately, I literally do not have 30 minutes in a row to myself right now. So the next question is- what can I do to take care of myself right now?

It took me a while but I finally came up with writing. I used to write all the time. It's my way of processing and I can do it for five minutes at a time if that is all the time I have.

This is what I wrote today:

Small Victories

Small victories. That's what I'm going to focus on.

An hour spent outside doing physio. Nursing Ailsa with one arm and rearranging toys for Zoe with the other.

Fresh air. Sunshine. Vitamin D.

Tomorrow we will spend all day at the hospital. But today is ours. Zoe running around in her walker while Ailsa sleeps and I eat lunch.

So much focus on Zoe's health. Assessing skin condition, breathing, temperature, daily dressing changes.

The balance has shifted. Always before we focused on having a life. Having fun. Seeing the positive. Now it seems we struggle to get past all this medical. Just to get through the day.

That is not healthy living.

Have to get back to life.

To joy.

To laughing.

Just 'cuz.

How do we get there? From now to then? From here to there? From A to Z?

Zoe is more than a collection of symptoms. Her life has to be more than just this.

We know that. But how do we get there?

We start with small victories:
Zoe playing the keyboard while I just sit and watch.
Eight loads of laundry in two days.
A real dinner made even though Zoe will not eat it right now.
The sound of Zoe's laughter at our surprise when she correctly identified the star and hexagon.

Refocus on the good. Let go of the difficult. Stop thinking about what life could be like because this is our life.

And life is good.