Tuesday, September 25, 2018

Finally- Some Help

Because of a mix up (I still do not understand how it possibly happened and went on for weeks and weeks) Zoe did not receive any nursing support the entire summer.  Normally Zoe gets 15 hours of nursing a week.  This is arranged and paid for by CCAC (Community Care Access Centre).  When Zoe was home in between hospital visits, she was very ill and required a lot of monitoring, medication, care, etc.  I kept calling and begged for help.  Literally, I started calling twice a week and begged.  Finally, I asked the social worker and nurse practitioner for help.  They made some phone calls to the right people and all of a sudden- bam- lots of support in place.  We now have more hours/ support then we really need but we are taking everything they offer and will cut back once we have people trained and see who fits well and who doesn't.

The challenge of help- training people to take care of Zoe in the way that she wants to be cared for.  I feel like if Zoe could use her voice she would have a lot to say to these various care givers:

-Although I am petite, I am not a baby!  Please don't talk to me in a singsong baby voice!  I am 11 years old!

-I see you are worried that I roll around on the floor but that is the only way I can move my body completely independently without equipment or people.  I love to roll and scoot and play, please stop blocking me and taking away my freedom.

-You get upset that food falls out of my mouth when I am eating.  Guess what- get over it!  I have low muscle tone, food is going to fall out, I am going to get messy, and that is just the way it is.  I love food, so stop wiping my damn chin and feed me!

-You get upset that I put toys in my mouth.  This is a way that I interact with my world.  I get a lot of sensory input from putting things in my mouth.  In fact, if it was socially acceptable, I would love to lick and munch your face to get to know you better...

-You think I bit you when you were hugging me.  First off- did you ask for that hug because I don't remember you asking to touch my body in that way.  Second off- that was a kiss and you should be happy that I like you enough to give you some Zoe loving.

-Please stop preventing my baby sister from climbing all over me.  This is how we play and interact.  I am not so fragile that she is going to hurt me.  I love being a big sister, so please just let us be.

-And lastly, stop complaining that I am heavy to carry.  Perhaps you should get in better shape if you are going to help people in their homes.  NO- we do not have a hospital bed or lift.  Would you like to give us thousands of dollars to pay for those things?  I don't like listening to people always talking about how difficult I am to carry, feed, care for, etc.  Do you think I want to depend on you?  I am trying my best, so please try your best and shut the f%ck up!

Hmmm, perhaps I should post these on the wall by Zoe's extensive medication list.  I might want to change some of the wording though...

We are extremely grateful for any help that we get.  However, all this help just started last week after an extremely stressful summer with no support.  So Gavin and I are so exhausted from not having any help that we are probably less patient then we should be.  It is just hard to allow anyone to be around Zoe who does not see what an amazing person she is and who respects her immediately.  Yes, we will work with who we have and yes, they will get to know Zoe and hopefully change their interactions.  But really- I wish Zoe could use her voice to just say what she wants since us saying it for her frequently falls on deaf ears.

PS We are looking to hire a respite worker, so if you know anyone in the Toronto area please let us know.  We are the ones who hire the respite person so we are able to be more choosy and find someone who is a good fit.  We have been lucky in the past and had some wonderful people in our lives.  My friend Maria says, "The first thing I check is the attitude.  If it's not good, then goodbye!"  Sigh, if only we had more control in choosing the other people that come in to our home.

Monday, September 10, 2018

Where Did Summer Go?

It's hard to believe that it is September already.  The weather has turned chilly and wet, the girls are back at school, and we are left wondering, where did the summer go?

By the time Zoe got out of hospital there were only 22 days left before school began.  Of those 22 days, Zoe had appointments at the hospital 6 days.  So that only left 16 days to have fun and make summer memories.  I think we made pretty good use of those days!

6 Days at the Lake  
Zoe loved swimming and being outside.  She also really loved visiting Grandma!

This is Zoe's new lifejacket- it allows her to be completely independent in the water.  She loves it!

5 Days at Niagara Falls!

 This is us on the Hornblower cruise.  Zoe LOVED getting soaked.  Ailsa was not sure about it and Willow hated it!

 Our hotel was North of the falls (which is actually down river) in a ravine area.  So we got to walk along the ravine and see the rapids.  Zoe kept asking to go swimming- the 6 foot high waves did not bother her!

 The girls loved the Butterfly Conservatory.  They kept wanting a butterfly to land on them.
 Even Zoe kept still in hopes of a fluttering visitor.  She was not so impressed when a cricket landed on her chest and then jumped on her mouth!

1 Day for back to school shopping!

Both girls picked our their own outfits they were excited to wear the first day of school.  Zoe was pretty tired waiting for the bus but she was very excited once it arrived.

Zoe has been pretty tired from all illnesses and travel but is feeling much better.  The other day Zoe was having some pain and she made it clear that she did not want to snuggle with mommy, she wanted her sister.  So Ailsa suggested they sit on the couch and snuggle under a blanket while she read to Zoe.  Zoe fell asleep after 15 minutes but Ailsa kept on reading for an hour.  She said, "I know when Zoe is sleeping she is still kind of listening so I am going to keep reading."  After that, Ailsa watched TV while snuggled against Zoe.  Zoe just kept on sleeping.  

I love watching the girls have their own relationship completely independent of us.  I am so proud of Ailsa for being patient with her sister and not turning away from her pain.  Watching someone you love in pain is very difficult and I am glad Ailsa has found a way to cope with her feelings and remain present with Zoe.  She has found her own way to connect with and comfort Zoe. 

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