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.