Sunday, August 12, 2018

Waiting to be Sprung

Today we are supposed to be at a cottage right next to a lake.
Today we should be playing in the sand and worrying about sunburn.
Today we should be swimming in the water (probably chilly despite this warm summer).
Today Zoe should be pulling on her new wetsuit that will keep her warm in the water.
Today Ailsa should be running in and out of the water and swimming on her own.
Today Willow should be crawling in and out of the water and definitely not swimming on her own.
Today all three girls should build a sand castle as we make sure Zoe doesn't put too much sand in her mouth.
Today we should be outside.
Today we should be on holiday.
Today we should be getting a break from the hospital.

Instead, I am packing up Willow and Ailsa to drive in to the hospital to see their sister.
Today we are discussing Zoe's current health situation with doctors.
Today we are worrying about what this all means.
Today is Zoe's fifth hospital stay since June 8th.
Today Zoe is uncomfortable.
Today Zoe is in pain.
Today I will hold Zoe as she bucks her body in pain.
Today I will comfort Zoe as much as I can.
Today I will comfort Ailsa as much as I can.
Today I will comfort Willow as much as I can.
Today my heart will break again and again.

As this day dawns we are hopeful that Zoe will be discharged from the hospital later this afternoon.
We feel like Zoe is a prisoner waiting to be sprung.
All of her doctors agree that Zoe needs a break from the hospital.
A break from the city.
A break from the pain.
A break.

But first we have to make sure Zoe is safe enough to travel the short driving distance of 90 minutes.
I hold my breath, awaiting their decision but doubting it with my heart.

Please- just give Zoe a break.

Zoe will have pain even while we are away but we hope that the sunshine and nature will help distract her from some of that pain.

Please- just give us all a break.

We need good summer memories.
We need to look back on this summer and remember something other then the fact that Zoe almost died twice.
We need to look back and have happy memories away from the hospital.
We need to look back and have any memories away from the hospital.

We just need a break.

Tuesday, July 17, 2018

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!

Saturday, July 14, 2018

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.

Wednesday, June 27, 2018

Zoe- the Bouncing Ball

I think Zoe must get her determination and fight from her dad, Gavin.  Like her daddy, Zoe surprises doctors and keeps on fighting when we all begin to have doubts.  I was chatting with another 1p36 mom.  Sadly, her daughter died a few years ago but like Zoe she amazed doctors with how well she would recover from illnesses.  It is amazing how these kids can bounce back.  One week Zoe is in the ICU and very sick, the next week she is home. Zoe is not 100% yet.  She lost weight, she is very shakey and her energy levels are down.  But considering where she was, we are all very happy with how she is doing now.  Zoe was extremely excited to go to school this week so she will not miss out on her last week of school.  She told me last night at dinner that so far this week has been "party, party, party and NO work!"

 June 18th- Zoe is home and playing with her sisters.

June 15th- Ailsa visits Zoe in the ICU.  3 days earlier!  What a difference!  Ailsa just climbed right in to bed with Zoe.  Tubes and medical equipment do not scare her.  All she sees is her big sis and she was so happy to see Zoe alert she climbed in for a big hug and some whispering secrets.  Who knows what those girls talk about?  When Zoe was moved to a regular floor the next day, Ailsa was again in bed hanging out with Zoe so the transportation staff told her she could stay there and travel on the bed with Zoe.  Both girls thought this was hilarious.

Tuesday, June 12, 2018

My Usual 5am Wake Up Call

No matter how hard I try or what sedative I take, I can not sleep past 5am when Zoe is in the hospital and I am at home.  If I were there with her, I could sleep past 5.  When I am with her in hospital I still wake up, but after seeing her sleeping, I then drift back to sleep.  It is impossible to get a good rest when your baby is in hospital.

Zoe is having a hard week.  She is in the intensive care unit on a breathing machine.  She has not needed this much medical help in four years.  We are scared.  We are exhausted.  And despite all the people around us, we feel alone.

We turn toward the 1p36 community at this point because we know we are not alone.  There are many (too many) parents that have gone through this with their 1p36 kiddos.  We know this.  But there is a scarier fact floating out there in the 1p36 community that does not comfort us.  And this is that fact- 1p36 kids die like this all the time.  Children who are more severely affected (like Zoe) get sick, end up on breathing tubes and never come off.

We try to shrug off this reality.
We try to shrug off our fear.
We try to shrug off our heartbreak.
We have to do this in order to get through our day.

Our day will be long.  Our day will be heartbreaking.  Our day will lead to a million thoughts about the decisions we make for Zoe and what is best for her.

The house is quiet.  Ailsa, Willow and Gavin are sleeping.  For the first time ever in Zoe's life Gavin and I both came home last night to sleep.  Zoe is unconscious right now.  We sit by her bedside, hold her hand and talk to her.  I know this makes a difference.  I know she can hear me.  But her being sedated like this makes us pause and look at the reality of our limitations.

This is not our first rodeo and I know it will not be our last.  We are in this for the long haul so we have to take care of ourselves.  So while Zoe's body gets the rest it needs in order to gain its strength, we are going to try to get some rest too.  We have to force ourselves to leave her at night and get some sleep.

Because I know that my little girl is going to wake up in a day or two, pissed off and agitated at her situation and we need to have the energy to keep on fighting with her.  Day after day.

To quote a popular song, I know that if Zoe could speak right now she would tell us:

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me

Sunday, June 10, 2018

Heartbreak

I knew the heartbreak was coming, but still.

Zoe had her tonsils out on Friday.  This was a surgery we were hesitant to do but everyone said it would be good for Zoe.  We knew this was necessary, but still.

We prepared for surgery, made a good plan, all was going well.  Zoe was doing so well in fact, they decided to discharge her this morning.  She had her immune system rash going on.  The rash that heralds something is amiss.  We thought something might be wrong but they were eager to send us on our way.

Perhaps we should have pushed to stay.
Perhaps we should have listened to that rash.
Perhaps we should have guessed.

We spent a couple hours at home and then back to the emergency room.

Zoe is struggling to breathe, she is seizing, she is vomiting.

We knew this might happen.

We were prepared.

But still.

This sucks.

Three Hugs

I got three hugs tonight
from my beautiful
amazing 
daughters.

The first was heartbreaking.
Zoe tells me she is scared.
She signs "help" repeatedly.
She worries she will get worse.
She wants me to stay.
She clutches my hand.
I wrap my arms around her
she puts her arms around my neck
presses her flushed cheek to my face
and she cries.
My tears roll down her face.

The second was full of lies.
When I get home from the hospital Ailsa is full of energy.
She played with the neighbours
she is excited about her day
she is tired and ready for bed.
I tuck her in.
I snuggle her.
I pretend that everything is ok.
She is not worried about Zoe
well- not seriously worried anyway.
She has faith that Zoe will be ok
that she will recover
that she will return home soon.
I tuck my daughter in to bed with these beliefs safely tucked in to her heart.

The third was milky sweet.
I nursed my exhausted baby until she was so milk drunk she could barely move.
I lifted her to my shoulder.
Her soft cheek pressed in my neck and I thought of Zoe.
I thought of all that I can not do for Zoe tonight.
I thought of how I can not be there with Zoe tonight.
I thought of how bad this could get before it gets better.
I thought of spending the night waiting for the phone to ring
for Gavin to call to say she is worse.
I thought how this has happened before
and probably will happen again.
I thought of all the choices we make for Zoe
the heartbreak
the pain
the burden.

I rocked Willow and thought of my three beautiful girls
my wonderful
sweet
amazing
funny
fun 
giving
kind
full of life
strong girls.
And my heart broke to think that some day there may not be three.

Wednesday, June 6, 2018

Happy Birthdays!!!!

Happy Birthday Zoe- February 21st!

Zoe thinks it is HILARIOUS when Ailsa helps her blow out her candles.  Look at all those candles!


Happy Birthday Ailsa- May 15th!  
Ailsa was so excited to get goalie gear this year.  Zoe was excited to help her out in net while daddy shot pucks at them.

Happy Birthday Willow- May 28th!
Zoe was excited to show Willow the toy that she picked out for her all by herself.  Willow loves the toy (and so does Zoe).