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.

Last Day of Preschool

Zoe's last day of Preschool was last Thursday. We decided to give her a break from school for August and she will start Kindergarten in the fall. We felt mixed emotions on Thursday. Zoe has outgrown what the school had to offer in the last few months but since she loves school so much, we had her continue going there. Even though we are very excited about Zoe's new school and know this is a good change for her, we were still sad to leave Ryerson behind. They had been so fantastic with Zoe and she loved going. It is hard to believe she is ready for a big girl school already!

Zoe signing friends Thursday morning before school. She signed the other day that she is all done with her friends at Ryerson and asked if she will have friends at her new school. We are confident Zoe will make lots of new friends. There was also a little girl at Zoe's new school on the day we took the tour who declared, "When Zoe goes to school here in September, we are going to be best friends." So at least we know she has one friend waiting for her.

A Mother's Right to Buy Matching Outfits

Yep, that's right, I am doing what my mother did and every mother before her- I am making my girls wear matching outfits. They looked so darn cute today when I dressed them up to go visit daddy at work. Gavin has worked 12 hours shifts for the last four days which means he leaves the house at 10am and does not get back until midnight. Zoe was really missing him today and just sobbed on my shoulder while signing "daddy." So we made dinner and went to eat with daddy at work. Luckily it was a slow day in the emergency room and Gavin was able to spend lots of time with us. Zoe was in a much better mood tonight after getting her daddy fix.

Speaking of daddy fix- I am absolutely amazed at how Ailsa really notices when Gavin is not around. She lit up when she saw him today and was chatting and smiling away. Gavin is much better at settling Ailsa to sleep at night since when I hold her all she wants to do is eat. We are all glad that Gavin does not have another shift until Thursday.

My two lovely girls looking cute in their matching outfits. The sock on Zoe's arm is to protect her PICC line. Thankfully, Ailsa does not have one of those to match her sister! Zoe was too interested in Ailsa to look up at the camera.

It's all fun and games until your sister bites your head. Zoe is trying to be gentle but gets overexcited at times. I don't think she actually hurt Ailsa but Ailsa obviously did not like Zoe's unique way of kissing her head.