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).

Friday, May 11, 2018

That's My Milk!

So many times people ask me how Zoe and Ailsa like having a baby sister.  I laugh to myself thinking, they should be asking- "How does Willow like having sisters?"  Willow crawls around here like she owns the place!  It doesn't occur to her that her sisters were here first.  She is at the stage where everything is "mine" and sharing is something her sisters need to do for her, not vice versa.  
Willow has such animalistic behaviours that it cracks us all up.  Whenever I am cuddling Zoe, Willow races over and will nip at my leg to get my attention while frantically signing "milk, milk, milk" as if she is saying, "Hey- thats my milk- back off sister!"  If Zoe is close enough for her to reach- she will slap Zoe's head or poke her in the eye.  Now, just to be clear, a good old poke in the eye could also be a sign of affection from our dear Willow.  In fact, her annoyed actions tend to look at lot like her sad actions, or happy actions, or bored actions, or...you get the point.  Zoe finds this behaviour HILARIOUS!  She just sits there and takes whatever Willow is dishing out.  Zoe says she remembers Ailsa acting this way but in my mind, Ailsa and Zoe have been such buddies that I don't really remember this phase.  

 Ailsa sometimes positions herself between her sisters to help remind both girls to be gentle with each other.  You can see Ailsa holding Zoe's arm down without effort.  Ailsa knows that Zoe can not always control her limbs as much as we would like her to.  We love that Ailsa has learned how to keep her body safe/ comfortable around Zoe rather than avoiding her.  
I love this picture.

Zoe Critically Ill

Zoe was critically ill a couple of weeks ago.  It has been a long time she she was as sick as that.  It seems like Gavin and I forget how medically fragile Zoe is and how easily her system goes out of whack.  To sum it up here is what happened:

-Zoe threw up a couple of times on a Wednesday. We gave Zoe clear fluids through her g-tube and some nausea medication and Zoe was fine.  We touched base with her complex care nurse practitioner and made a plan to bring Zoe to her doctor in the morning.

-Zoe had an ok night but was very lethargic in the morning.  On the way to the doctors office, Zoe started vomiting and seizing- not a great combo.  Gavin had to hop in the back of the van to administer emergency seizure medication and try to prevent Zoe from aspirating vomit in to her lungs.  I drove to the hospital instead of the doctors office.

-When we got to the hospital they called an emergency response on Zoe.  So- lots of people, lots of talking, lots of excitement, lots of medical interventions, etc.

-Zoe had to be "loaded" meaning she needed some serious medications to stop her seizures.  She also had very low blood pressure which required her to get a lot of IV fluid.  At the time the doctor acknowledged that Zoe getting IV fluid might upset her system but at the time he did not have any other choice.

-That fluid ended up going to Zoe's lungs and heart.

-Zoe is ok now.

-Zoe is home now.

-Zoe is back to school.

This admission was seriously a whirlwind and we are still exhausted physically and mentally from it all.  No one knows why Zoe got so sick from "just" a bladder infection.  She has had many bladder infections and not gotten sick like this but she has also gotten this sick from a bladder infection in the past, just not for a long time.  There is nothing we can do differently to prevent this from happening. 

All of the doctors were amazing and made good decisions so at least we do not feel anger at bad care or anything like that.  We can feel anger at the world, life, etc but the hospital staff were great.

We probably do feel some anger...maybe?  I'm not sure.  Mostly, we just feel tired.  And scared.  And grateful.  And proud that Zoe is such a fighter.  

Zoe reached out for my hand in the emergency room when she was between seizures.  She gazed in to my eyes with a scared expression on her face.  It seemed like she was saying, "Fix it."  I squeezed her hand, kissed her head and told her she was going to be ok.  We were right there with her.  We weren't going anywhere.  I plopped Willow on the bed next to Zoe and she gave her an affectionate poke in the eye for good measure.  Zoe did not respond but I know she felt us there, fighting for her when her body was too tired to fight.  

We were in this exact same position almost 7 years ago.  Ailsa was the baby then.  She, like Willow, sat in the stroller and watched as doctors saved her sister's life.  What a weird, and I would like to think wonderful, family Willow has joined.  So far she seems to fit right in.  

Gavin's birthday in March.

One last picture to show Willow smiling because she looks so serious in the other photos.  She actually smiles all the time, just not when we want her to!

Monday, April 23, 2018

This is Not What I Had in Mind...

It's been a long day.  A really long day.  Gavin can see that I need a break.  We make a plan- he will take over with the children for an hour or so and I will get a break.

I think about taking a walk to the library.

I think about meditating or doing some yoga.

I think about taking a shower.

Before I can decide, Gavin calls out that Zoe's g-tube is missing.  We just gave the girls a bath and Zoe is getting dressed.  There is a hole where Zoe's g-tube should be.

A hole but no tube.

A hole that is now empty.

So where is the tube?

I find it in the bathroom by the toilet.

I clean it off.  Soak it in a solution to sterilize it (it was hanging out by the toilet after all).

I find the supplies...or most of them.  Gavin has to search for a sterile KY gel to help the tube glide in more easily.

Supplies in hand.

No big deal.

Still plenty of time for a break.

Tube in hand, I push it back in to the hole in Zoe's stomach.

The hole that I hate to see.

The hole that makes life easier when Zoe is sick and I know is necessary but really, who wants to see a hole carved in to their child's stomach?

I push and twist but the tube will not slide in.

What is the problem?

This should be a quick procedure.

Why won't you go in?

Thirty minutes later Gavin and I have both attempted to get the tube back in and no joy.

I am starting to feel a bit queasy with every new attempt.

I worry we are pushing too hard and will create a "false passage"- that the tube will pierce through the man made channel in to her body cavity.

I begin to worry we aren't going to get this stupid tube in and will need to take Zoe to the hospital to get it replaced.

Stupid.

Freaking.

Tube.

Just go in all ready.

I start to feel really frustrated and nauseous and a little pissed.

This was supposed to be my break time.

I really need a break before nursing Willow.

I really need a break before getting Zoe's meds ready.

I really need a break before I clean one more freaking thing in this house.

So I take a deep breath and make a joke instead.  I turn to Gavin and say, "Just to be clear- this was not the break I was talking about.  This does not count."

And we both know this sucks.

And we both watch Zoe wince as our attempts become more forceful and her poor tummy muscle becomes irritated and sore.

And we both want to throw that stupid, freaking tube out the window.

Finally- 45 minutes later the tube slides in to place as if it is no big deal.  Zoe giggles, relieved.  There is not blood like there sometimes is and Zoe immediately rolls away from us and goes back to playing, obviously fine.

And I think about when we decided to have children.

Gavin and I talked about adopting children.  There are so many children in the world who need a good home.  And we talked about adopting a child with special needs because those children get overlooked and left behind.  And we talked about how we wanted to do that but perhaps first we would have a healthy child of our own.  We both worked at the hospital and we were around children with needs all the time.  We worried that if we adopted a child with special needs it would seem more like work then being a parent.  Plus- I was young, only 26.  I wasn't ready to have a child with special needs.  So we decided, have a healthy child or two of our own and then adopt.

That was our plan.  That is what we had in mind.  That was the life we chose.

And then this life chose us.

Wednesday, March 28, 2018

How Zoe's Brain Works

Sometimes I look at Zoe and I really wonder how her brain works, what she thinks about, what is she trying to communicate?

On one hand I look at Zoe and she is playing with a light up toy that plays music.  She spins the toy constantly, she rolls around moving the toy back and forth on her face, she sticks her tongue out licking the toy and sometimes she has a serious look on her face and other times, she laughs and smiles to herself.  Many times, we are not really sure what the joke is but it is a joy to watch someone so grounded in the moment just enjoying life.  It isn't until I look up and see other people staring at Zoe that I realize this joyful behaviour is not seen by others the way we see it.  It seems that other people miss the smile or joy or enjoyment and instead see a non-verbal child obsessively licking and playing with a toy.  It is amazing how one behaviour is interpreted in different ways.

And what about when Zoe uses her iPad to talk?  You would think that is straightforward.  When Zoe pushes a button that says "I want..." or "I feel..." or "My chest hurts" it would be understood that that is what Zoe is trying to say.  However, Zoe struggles to push the "right" button the first time.  Her hands tremble, she struggles to get her fingers to go where she wants them to go and sometimes the stupid iPad takes her push for a swipe and goes to a completely different program when she is in middle of talking.  And so Zoe's communication can get lost in a world where people want answers right away, quickly and succinctly.  People don't have time to slow down and listen to a little girl who is trying with all her might to communicate.  Besides, looking at Zoe licking her toy and staring off some people probably think, "What could she have to communicate anyway?"  I think it is easier for people to think Zoe doesn't have much to say and isn't very smart and isn't really feeling much.  That way they do not have to take the time to listen or consider her feelings.  That way she is the "happy idiot" rather then just a little girl who is trying to say something.  That way they do not have to feel guilty when they exclude her.

Gavin and I know Zoe so well that sometimes we can just tell what she is trying to say.  Everyone has this experience.  We all know someone so well that they can just look at us across a room and we know exactly what they are thinking.  Sometimes (I like to think most times) we are correct in reading Zoe.  Other times, Zoe surprises us with what she wants to say.  I think some people question whether Zoe is really saying what we say she is or whether we are "being overly optimistic in assuming more from her communication than what is truly there."  And so sometimes I feel like a bit of a crazy person who wants to shout- NO this is not me saying this, this is Zoe and I am just her voice in a world too stubborn and busy and stupid to listen to someone who communicates differently.  Sometimes what Zoe has to say is so complex I have no idea what she is trying to say until we work it out.  Sometimes it literally takes days to figure out what Zoe is trying to tell us.  And you might think- days, really?  Surely Zoe must give up on what she has to say by then?  I know I would probably give up.  But not Zoe.  Zoe is very "patient and persistent" in her communication.  She will just keep repeating the same thing over and over and over and over and over.....ok you get my point.  When we finally figure out what Zoe is trying to say, she smiles and has a look like, "Finally!" and then she calmly confirms "yes" when asked if that is what she was trying to say all along.

Sometimes I myself do wonder if I am being overly optimistic in seeing something there that isn't there.  Perhaps Zoe is just a kid who is unaware of the world around her.  But then Zoe says something so complex and unique that I know there is no way she is not paying attention.  And there is no way we just made it up.  And then, when other people have the same experience with Zoe, that is really cool.

-Because that means that there are others willing to take the time to communicate with Zoe.
-Because we aren't just being "optimistic" like stupid specialists and sometimes doctors have said.
-Because Zoe sees the world in a different way than I do and I love when she shows me something that I didn't see before.
-Because I hope that as Zoe's fine motor improves and communication devices advance, Zoe will be able to tell us more and more about what she is thinking.

Here are some examples of conversations that took me by surprise:

Recently, we went to the ROM (Royal Ontario Museum) and Zoe insisted on going in the Egyptian exhibit.  Once there, she directed me to the mummies and said she had wanted to show Ailsa the dead bodies.  (Ailsa at one point was very interested in dead people.  We had a close friend die last year and Ailsa was full of questions- how did they know she was dead? What did she look like? What did they do with her body? etc) Zoe then told me that she came to this area before on a class trip and thought Ailsa would like it.  I racked my brain and said I honestly did not remember being in this room with Zoe before so I didn't think she was correct.  Zoe was insistent not only that she was there with her class, but so was I.  I thought, ok fine maybe she is correct.  After viewing the dead bodies (Ailsa was not very excited about seeing actual dead bodies) we went in the the next room and suddenly I recognized the room and remembered that we had come to this area before.  I remembered Zoe's teacher dressing up like an Egyptian woman and talking about women in Egypt.  Zoe was correct- we had come to this area before!  What surprised me even more was that class trip was 3 years ago!  3 years!  Zoe remembered coming to this area of the museum and seeing the mummies even though the class didn't focus on that area and knew they were real dead bodies and wanted to share that with Ailsa.  Zoe laughed when I told her I remembered the room and yes, she was correct.  She laughed, held my hand and then let it go as she picked up her light up singing guitar and went back to licking.

When I was pregnant with Ailsa we decided not to tell anyone yet, including Zoe.  I went to pick Zoe up from daycare and the teacher pulled me aside and said Zoe had been telling them something they were not sure how to react to.  I asked what she was saying.  "Zoe is insisting that mommy is throwing up because she has a baby in her belly."  Ummm, ok I guess the secret is out on that one!  From then on we jokingly called Zoe "blabber hands."

After Gavin had meningitis the first time he did really well initially.  After a few months he returned to work.  But then Gavin started having really bad migraines again.  We brought him to the hospital and his family doctor.  Everyone told us that it was just a bad headache.  Zoe kept getting upset and using the "worried" card on her communication board.  She would sign "daddy" repeatedly.  I reassured her daddy was fine, he saw the doctor and the doctor said he was fine.  Zoe was upset all week.  That Saturday I rushed a delirious Gavin back to the hospital and found out- yes he did have meningitis again, the doctors had been wrong.  As soon as I knew he had meningitis again my heart sank.  How could I tell the girls and not scare them?  Ailsa was easy, she was only 20 months old and did not realize yet that daddy was not invincible.  Zoe on the other hand knew how serious this was.  When I sat down with Zoe to tell her she started laughing and smiling.  It was like "I told you so."  Zoe was not worried that Gavin would not recover, she just seemed relived that we finally got him the help he needed.  Never before or since had Zoe been so insistent and worried about Gavin's migraines.  It was like she just knew this was different.

The brain is such a wonderful and weird thing.  In some ways it seems like Zoe is able to see things I completely miss.  In other ways, she is just a little child.  One minute she is playing with a toy, rolling around on the ground and laughing to her self.  The next minute she is telling us she only wants to wear grown up cloths now and she has a boyfriend in her classroom.  I am not saying that Zoe is special and can see things that aren't there.  I think in many ways Zoe is just like everyone else.  One difference I see in her though is that she sees the details.  She lives in the moment, she feels other people's emotions and reacts to them.  When she is in pain, she feels that too but she is able to put that aside and not let it ruin her day.  Some people look at Zoe and say, "Poor baby.  Poor child.  Poor Zoe."  I don't think Zoe wants anyone's pity.  And I don't think Zoe feels sorry for herself.  She cries in the moment.  She gets upset.  She feels pain.  Just like we all do.  But then she moves on and finds something joyful in the moment, just as the moment is.  I don't think she gets stuck on the judgements and the what ifs like I do.

Zoe wasn't put on this earth to be an example to us all but by simply being herself Zoe is an example. Every day she makes me stop and notice the little things.  In some ways my life is more painful than it ever was before.  But in many ways it is more joyful too.  I just watched a movie that had a great quote.  When speaking to a monk the character pointed out that the monk had been through so much, he had been jailed, he lost many people he loved, he was persecuted and so the character wondered, how could this monk be so happy after going through so much?  The monk answered, "It is because I have been through so much that I can be happy."

Tuesday, March 20, 2018

How To Get Started, How to Continue Once I Start

Every time I go to write an entry one of two things happen: 1- I start looking at pictures to add and I get distracted by looking through all the photos of my gorgeous girls or 2- I start to think about how it has been a hard couple of months but how I do not want to focus on that so how do I highlight the positive while giving an honest picture of what life has been like?  And so, months pass and I have not written anything.  So here goes:

First- lets get some of those cute pictures out of the way...

 We took the girls to a costume store for Halloween.  Ailsa knew from the start that she wanted to be a witch.  Zoe also had an idea what she wanted but it took a while for us to figure out what she was trying to say.  In the end, we knew it had something to do with Ailsa being a witch but "no" she did not want to be a witch.  We finally figured out that Zoe wanted to be a black cat!

 To add to the theme- we made Willow their pumpkin :)

 Here is a beautiful picture from Christmas morning.  We had a fantastic Christmas.  Zoe started an antibiotic on December 23rd for an infection so she was feeling much better by Christmas Day.  Everyone was feeling well and it was so nice to spend the day as a family.  

And a cute one of the girls playing together.

We have quite a few pictures like this- Zoe sleeping.  Sometimes she is sleeping on one of us, sometimes she is with her sisters, sometimes she is just passed out in middle of the floor.  Zoe had multiple infections in September through February.  Now, she is having chronic pain issues again.  Zoe has gone though periods where she struggled with this but had been doing well for the past year until the last few months.  Zoe is frequently tired but never wants to miss out on the action so she asks to still be part of things.  She wants to go places and be in the living room with the family even when she is so tired she can not stay awake.  So this is a picture of Zoe falling asleep during story time.  We joke that Zoe is one of those kids that always falls asleep first at the slumber party and ends up with goofy photos or the word "dork" written on their forehead.  So far we have not written anything on her, just lots of photos :)

Watching someone you love struggle with chronic pain is heartbreaking.  Zoe is such a strong person and has a high pain tolerance so when she cries, we know she is really hurting.  It is hard when she needs someone to just hold her but I am trying to get other things done like nursing the baby, making dinner, etc.  Thankfully we have some great people in our life that are willing to sit and snuggle with Zoe for a while.  And Zoe gets a lot of comfort from her two sisters.  

We have many more cute photos from all the amazing things we have done lately- a trip to the Aquarium, the Science Centre, ROM (Royal Ontario Museum), CN Tower and a hockey game.  We have been so lucky to get tickets for all sorts of cool outings from the Starlight Foundation- an organisation that "brings children with serious medical conditions smiles and helps their families cope."  In between Zoe's infections and pain, we have been able to do some amazing things as a family and it is great to see the girls having so much fun.  We even went on a trip for March break.  The girls LOVED swimming in the pool every day.  We realised that Zoe's life jacket is not working for her anymore.  She is not able to get the freedom she wants since she is unable to keep her face out of the water so we have ordered a new special needs life vest/ float.  Zoe loves swimming and we hope to bring her the freedom she gets in the water.