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


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

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
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).