Enjoying The Simple Things In Life

Unfortunately, Zoe has had a really hard month.  After being home less then two weeks, she had to return to the hospital for another bladder infection and a viral infection that gave her pneumonia.  She again needed more support with breathing this time.  She was able to be in the Intermediate Care Unit (a step down from the Critical Care Unit she was in last time) on a high flow oxygen machine.  She needed a lot of deep lung suctioning which was just miserable for her.  It involves a tube being shoved down her nose and in to her lungs.  As always, Zoe did amazing.  She is so strong.  Such a fighter.

Ailsa had a really hard time with this hospital stay.  She has a lot of fear about Zoe dying.  She does amazing expressing herself and asking questions.  It is heartbreaking to tell her the truth she already knows.  We don't know anything for sure, we don't have the answers but the truth is, yes- Zoe was a lot sicker these past two hospital stays and yes, it is possible for Zoe to get sick and not recover.  Yes, it is possible that Zoe could die.

Zoe also shares these fears in the moment when she can not breathe.  She was really scared this time. I think the memory of being intubated was fresh in her mind.  But Zoe seems to forget about that fear once she is home.  She is able to really live in and enjoy the moment.  We all strive to do the same.

Here are some pictures from our backyard when Zoe was home for those few days.  We have not been able to do much this summer, we haven't been able to travel far, but the time we do have we have enjoyed spending as a family.

 The playstructure from Million Dollar Smiles is still used almost daily when we are home.  You can see by the smile on Zoe's face, she still LOVES swinging.

 Willow is enjoying the slide.  Grandad, as always is willing to jump right in and play.  As Grandad ages, he has not been able to do as much of Zoe's medical care, but we are so glad he is here to just be Grandad.  The girls love spending time with him.

Happy July 1st!  The local park did not have fireworks this year so we had some in our own yard.  This was the first year Ailsa was able to be around and enjoy fireworks.  She loved the sparklers.  Zoe enjoyed them too but was having a hard day because she was getting sick again.

We also have a blow up pool in the backyard now that the girls are loving.  Zoe is able to use her new life vest float and swim on her own in the water.  Since the water is not very deep, she is more bum scooting swimming, but she loves it because she can do it all on her own.  We haven't managed to get any pictures of the girls in the water since its all hands on deck when all three of them are in the pool!

To Ailsa, With Love

I creep in to your room
you are sleeping
finally.
We spent the day at the hospital
again.
Another day,
and another,
and another
where you watch your sister struggle to breathe.
She is improving,
finally.
You can see this.
You know she has turned a corner.
And so you relax,
finally.
Your face is sweet and so innocent.
You are so young.
You are a child.
Sometimes, we forget.

You love Zoe so much.
So much.
And she loves you so much.
So much.
You listen to her recorded snores on the computer.
It's the only thing that soothes you to sleep.
You miss your big sister.
You need your big sister.
It doesn't mater to you how "disabled" she is.
All you see is the amazing sister who is there for you.
She listens.
She plays.
She laughs.
And she loves.
You are her sister and you love her so fiercely.
She loves you with all her heart.
Always.
And you know this.
This is why it hurts.
This is why you cry when we left the hospital earlier today.
This is why you listen to this recording,
again and again.

We love you so much.
You are so important to us.
We see your needs
and your pain
and your hopes
and your fears.
We are here with you.
And we love you.
Always.