An Amazing Summer!

We had an amazing summer this year.  In March we bought a 25 foot motorhome.  The motorhome is big enough to have three beds and a much needed bathroom but small enough to fit in to most campsites and is easy to maneuver.  We love camping and have a family tent that is big enough for all of us.  However, Zoe's bowel flush takes at least an hour and now that she is 14 years old, she needs her privacy.  (The "poop" tent idea was ok in theory but had it's issues when put in to practice two years ago).  So I began researching RVs.  For those of you looking at motorhomes, we only found a few models that had car seat anchors.  And only two models that had three point seat belts and car seat anchors.  I was very surprised that seats in motorhomes do not have to be certified because they put "positioning belts" in them, not certified seat belts.  So our search was quickly narrowed and luckily the model we wanted is a Canadian brand so that made finding and buying it a lot easier.  We were fortunate to find a 3 year old motorhome that didn't have too many kilometres on it and is in great shape.  

We spent over half the summer camping this year and it was awesome.  We went to 12 different provincial parks and one national park.  And we have a few trips planned for the fall before it gets too cold.  The RV has a propane heater and enclosed water pipes so we can camp comfortably in the fall and spring.  We could even try winter camping but it gets a little tricky because there wouldn't be anywhere to dump the water and waste tanks.  Also- Canadian winters can get very cold!  For now, I am very excited to be able to camp in spring and fall.  Because of Zoe's poor circulation she gets cold very easily so in the past we were only able to camp in July and August.  This year we started camping in April and haven't stopped yet!

One of the positive things about Gavin being ill was that he was off of work most of the summer.  Initially he was very tired and recovering but as he began to feel better but not yet approved to work we were able to go on some awesome trips.  We even went on a three week trip from home to the Thunder Bay area.

We couldn't believe there are such clear, blue-green lakes in Ontario!

Zoe loves swimming!  Zoe's poor circulation means she gets cold easily in the water but her wetsuit keeps her warm so she can swim for longer periods of time.  This life vest had been amazing for Zoe- she loves swimming independently. 

Zoe warming up in the sun while Ailsa and Gavin keep on swimming.

Our campsite at Sleeping Giant Provincial Park was amazing.  We stayed at a remote site that is across the lake from the main campgroup.  We had a large site right on the lake.  Our motorhome has solar panels to recharge the batteries so we do not need to stay sites with an electrical hook up.  We can stay in any type of site. 

We modified the hiking backpack so Zoe can still fit in it.  This is great for trails that are not wheelchair accessible.  We realized this year that we might have to stop carrying Zoe soon- she's half my weight now and her feet hit the back of my calves!

Ailsa had asked to visit the Terry Fox monument last year which is why I started planning this trip to Thunder Bay.  This stop was meaningful for our whole family but especially Gavin.  Terry Fox meant a lot to Gavin when he was an adolescent with cancer.  Gavin has how many miles Terry ran tattooed on his back.  After thinking he could never have children because of cancer, taking our family to see the monument was very special.

Pukaskwa National Park was beautiful.  They had some great accessible trails and beutiful beaches.

At a 1p36 conference years ago someone mentioned this blow up bed as a travel bed for children with special needs.  We would put Zoe on the floor when travelling so she would not roll off the bed.  But as she got stronger and rolled more this became a problem because we would find she had rolled under the bed, next to a heater or even in to the bathroom while we were sleeping.  This Intex "toddler travel bed" from Walmart has worked so well for us.  Zoe even uses it when she is in hospital- it fits the hospital beds perfectly.  And it just happens to fit the RV dinette bed perfectly too.  This prevents Zoe from rolling out of bed.  Thank you to whoever it was that told us about this bed!  We've learned such great advice just chatting with other parents.

Zoe Graduates 8th Grade!!!!

 Congratulations, Zoe- we are so proud of you!!!!!

Zoe was very excited to go to school for her ceremony.  We were not allowed to go but we had a live link so we could watch and cheer Zoe on.  Ailsa is still doing virtual school so she was able to watch with us.  Grandma Sheena was able to watch all the way from British Columbia!  And Grandad Alan was able to watch from his condo 5 mins away.  Zoe loved hearing their voices.  

Zoe was awarded the music award.  She was very proud of herself and kept talking/ vocalizing the entire time her teacher was talking about her.  It was pretty funny.  You can't keep that girl quiet when she has something to say.

Gavin had a major health scare recently and that was really hard (obviously!).  Covid restrictions made things even harder for their girls since they could not see daddy for three weeks. With Gavin being critically ill and the news that another one of the 1p36 children we hold close in our hearts has died, we really appreciate these moments of celebration.  It is so hard to believe Zoe is going to highschool next year!  There have been scary times when we didn't think she would make it to graduation but here she is- beautiful, strong and amazing.  And we are so very grateful for that.

Recently I read an article about Howie Mandel and his mental health struggles.  He said something that really resonated:

"I'm broken.  But this is my reality.  I know there is going to be darkness again- and I cherish every moment of light."

We have been so very lucky in this life to have Zoe and two other amazing girls.  And many bright moments of light.  

Oh no, more bad news from Gavin. Then some good.

Gavin here.  I had yet another health crisis recently- I had a major and totally random intestinal bleed and was in hospital for 20 days. I required 19 blood transfusions during this time.  And then it stopped, without identifying where the bleed actually was.  And through it all my wonderful, amazing wife kept everything going. I am recovering now- no more bleeding but still not at my best. That's the bad then the good- yet another random health scare followed by me recovering. And the the gitls are amazing. It was so hard on everyone, with the Covid restrictions (no visitors).  

The good- my amazing family, my wonderful wife. 

The bad- another instance of my body letting me down, and making me feel it just isn't cut out for living in this world. What random and rare medical condition will strike me next, and when?   

But in the meantime I can only marvel at how lucky I am to have the life and the family I do.  So lucky. 

15 Years!

 In November Gavin and I celebrated our 15 year anniversary.  15 years!  Wow, that time went by so fast.  I remember when Zoe was born I felt devastated.  We had left her at the hospital for the first time and I couldn't stop crying.  And after lying in bed for a while, Gavin fell asleep but I laid there wide awake.  And I remember feeling devastated, not just for Zoe but also for my marriage.  What was going to happen?  I thought, "Will we make it?"  Having a child with disabilities puts a tremendous strain on your marriage.  In our first year of marriage we had gotten pregnant (something we were told could not happen because of Gavin's cancer history), found out my immigration paperwork had gone through, moved to Canada and started new jobs.  There's a few major stressers right there!  In the second year of our marriage, Zoe was born.  Would Gavin be on the same page as me regarding Zoe?  How long before he takes off like many dads have done?  

Turns out that Gavin and I were definitely on the same page.  We made important choices in those first few days without even speaking about many things.  We just knew what Zoe needed and we knew that no matter the cost to us, we were going to give it to her.  Gavin supported me 1000% (yes, that's 1,000) on breastfeeding Zoe even though it involved a lot of extra work for both of us.  There were times when I was so tired from pumping and feeding Zoe that I could barely keep my eyes open.  Gavin would spoon feed me while I nursed our beautiful, wonderful daughter.  And he would take my pumped milk and put it down Zoe's feeding tube while I slept.  There have been many times Gavin and I worked in sync without much comment.  Many diaper changes on airplanes, appointments with doctors, taking care of each other and our children.  

Of course there were times when we weren't in sync.  Times that got really hard.  Times when commitment felt like a commitment.  But through all the years Gavin and I knew we could count on each other when it truly mattered.  We are truly partners and that is why we are still together after all this time.

We are so grateful for all the people who have helped us take the time we need to take care of our relationship.  We have been very lucky over the years to have amazing respite people and nurses.  However, if we did not have Gavin's dad Alan, we would not be able to go away every year for our anniversary.  Respite people and nurses come and go throughout the years but Alan's commitment to us, to our family and ensuring Gavin and I have time for eachother has never wavered.  

This year we rented a cottage in one of the provincial parks to celebrate.  We went away for three lovely nights.  The cottage was perfect- we had a kitchen to make our own meals, a lovely fireplace and a big bed for sleeping.  We did a lot of sleeping!  We also had time to go hiking which was loads of fun, we haven't done that in a while.  

I am so lucky that Gavin and I found eachother.  Without him, I wouldn't have any of this.  He is amazingly generous.  We joke that if there is something I want, even if Gavin is not on the sage page initially, it will happen.  (Like that camper he is going to buy me next year so we can camp and give Zoe privacy while doing her hour long MACE bowel flush...right?  We are buying that right?) He takes care of all of us time and time again.  Even after having his spinal cord tumour removed and getting meningitis not once, but twice (who does that?) he has gone back to work.  He puts all his energy toward taking care of our family.  And he is never boring- I have to say- that guy keeps me on my toes.  I don't think I've been bored a single day since I met him!

Happy Halloween!!!

 

Zoe wasn't feeling great on Halloween since she spent the night before in the emergency room.  Thankfully she did not need to be admitted so we could spend the day as a family.  Since we couldn't trick our treat this year we did a hunt in the back yard like we do at Easter.  The girls had a lot of fun and we were so grateful to celebrate Halloween together.

Ailsa wanted to be Anne of Green Gables this year and Zoe wanted to go as Diana (Anne's BFF).  They tried to convince Willow to go as Minnie May but alas, the butterfly costume won again!  In case you are thinking "Hey, that costume looks familiar" you are correct!  The butterfly costumes have been around since 2011 when Zoe was stuck at the hospital for Halloween and Zoe's amazing respite worker, Riann found two butterfly costumes last minute for the girls.  So we had one 3T size for Zoe and a baby size for Ailsa.  But the larger size has made a comeback several times in the past few years.

Ailsa in 2013.  She looks so much like Willow in the picture above!

The most exciting part of Halloween was riding down our very own wheelchair lift!!!!  The lift project is finally complete!  The driveway part of the project was finished just in time for Zoe to have a smooth ride to the back yard. 

Back to School!

 Yay, we are so excited that schools are open for in person learning.  We are lucky to live in Toronto where we get to choose in person or virtual learning.  After speaking with Zoe's doctors, Ailsa's nephrologist and the girls' pediatrician, we have decided to go with the in person decision.  We can switch to virtual learning later if circumstances change.  

The girls were so excited to shop on line for back to school outfits and show them off their first day.  Willow started pre-school and is excited to go to school like her big sisters.  

Willow says goodbye to Zoe from a "safe" distance.

Back to school is definitely looking different this year.

Thank you Camp Sunshine!

We had signed up for a family camp for children with kidney disease.  Ailsa was so excited to get to meet other children her age and to be the focus of a special needs camp instead of "just" the sibling.  Unfortunately, camp (like everything else) was cancelled this summer.  However, Camp Sunshine did a virtual camp in August.  It just happened that it was going on while Zoe was in hospital.  It was a great distraction for Ailsa and Willow at home.  And when Zoe was feeling up to it, she could join in from the hospital too!  Camp Sunshine is an amazing organization and we really look forward to going to the family camp next year and meeting all the wonderful volunteers and staff in person.

Ailsa and Willow made crafts at home and sent some of them to Zoe to decorate her room in hospital.

The girls all loved watching the virtual programs, especially the talent show.  A&W watched from home while Zoe FaceTimed with them and watched too.  Lots of giggles and smiles all around.

Summer Time and the Livin's Easy.....Until it's Not

 Summer Time Fun

Happy July 1st Canada!

The zoo reopened and we went several times.

It's amazing how much fun the girls can have in a small pool!

We even managed to rent a cottage right on a lake and have some time away from the city.

Summer Time Not So Fun

Zoe had to have the PORT catheter in her chest replaced this August.  It was a planned surgery and all went well that day.  However, a few days after the PORT insertion Zoe became very ill.  She had picked up a bacteria while getting her new PORT and it had infiltrated her blood stream.  Zoe was very sick and had to have the new PORT removed a week after it went in.  The infection began to clear up once the PORT was out and Zoe was on strong IV antibiotics for several days.  Because of the seriousness of the infeciton Zoe had to be on the antibiotics for 14 days after the PORT came out.  During this time Gavin and I talked about the PORT- infection is a risk with having it, should we put another one in or wait and see?  It was hard to believe that a choice we made- Zoe having the PORT- had resulted in her being critically ill.  Zoe quickly told us what she needed- after a week on IV antibiotics with no PORT, her vein access got worse and worse.  She started going through a new IV (which took several attempts and sometimes several hours between attempts) every day.  Then she started needing a new IV every 12 hours...then after every dose of medication which was given every 8 hours.  Finally they could not get vein access at all so they had to start doing IM (intramuscular) injections which were painful and not as effective as medication in the vein.  So obviously, Zoe still had poor vein access and needed her PORT.  This was not a choice but a necessity for Zoe to receive the IV medications she will need when she is ill.  And so, for the third time in three weeks, Zoe went back to surgery to get a new PORT put in place.  She still had a bumpy road to recovery but the new PORT did not become infected and Zoe was finally off the antibiotics and able to come home.  

Happy Birthday Ailsa and Willow!!!!

 Celebrating your birthday during lock down is tough for many children this year.  None of the girls got to have a party with their friends, but that didn't stop us from celebrating as a family.  

Ailsa was so excited to get Saila- the Maplelea Canadian Girl doll from Iqaluit, Nunavut.  Ailsa enjoys learning about the Inuit heritage and had been asking for Salia for a long time now.

Just because you can't party with friends doesn't mean you can't party in the backyard by jumping off things (one of Willow's favourite activities right now).

Another great way to celebrate a birthday during lock down- a drive through the Toronto zoo!  After spending 10 weeks isolated at home, the girls loved it!

May

 Third month of lock down and we are enjoying the warm weather and spending time outside.  

Ok, so maybe not warm weather but definately warm-er.

The girls have all been cooking up a storm.  Zoe especially loves it when she can use the chopper- she loves whacking the top of it and the loud banging sound it makes.  We've been integrating math and science curriculum in to our kitchen routine.  Home schooling can be fun at times but a lot of work!  

One of the cool things about homeschooling is we can add things to the curriculum that schools no longer teach but we feel are important skills to learn- like touch typing.

Art class!

Music class!  Zoe's music teacher ran an online group every week and all the girls loved to join in.

Ailsa's movement/ dance class online.

Wrestling class?!?!?

Pressure and a Whole Lot of Family Time!

I am sure we can all relate when I say I am feeling quite a bit of pressure lately.  Besides our usual busy day, we are now homeschooling 3 children and not getting many breaks!  Occasionally I hear people say they are getting a lot of spring cleaning done and isn't it great to have extra time right now.  To that I say, ha!  They either don't have children or they are just lying!  Getting through the day has it's challenges but I wanted to write what I am grateful for during this crazy pandemic.

First and probably most importantly, we are all healthy.  I do not take this for granted and my heart goes out to those who have loved ones who are/were seriously ill.  I know what it is like to see a loved one struggle to breathe and it is truly awful.  And I am so grateful that we are all at home and healthy.

We are getting to spend a lot of time together as a family right now.  Yes, I desperately need a break and I miss silence but having time together is always a good thing.  I can see Willow and Zoe's relationship change because of this forced closeness.  Ailsa and Zoe were always tight.  I think part of this is their personalities but also Zoe was Ailsa's only sister and playmate so of course she learned how to play and communicate well with Zoe.  We've had a lot of nurses helping us out lately so there are times when it feels like Zoe is a little apart from what we are doing.  She is still sitting with us at the dinner table but with a non-family member feeding her it does change the dynamic.  So having all this family time has allowed Willow to spend more one on one time with Zoe and their relationship has really matured.  I love seeing them play together and how Willow communicates with Zoe.

Another positive thing is that I've been pushing myself (and everyone else) to be more physically active.  We've been roller blading and bike riding more often than we ever have.  Zoe really loves when Gavin pushes her wheelchair while he roller blades fast!  We are working on borrowing a bike from school for Zoe to use.  She has one she uses at school and it's just sitting there so hopefully we can arrange that.  Ailsa has grown so confident and coordinated in her bike riding it would be great to see how Zoe does with practice.

We all look forward to the world getting back to normal but for now we are trying to make the best of things and enjoy what we do have.  I hope all of you are healthy and you have what you need to get through your day.    

Zoe has always been good at keeping herself entertained and finding fun- she loved exploring a box of pasta after grocery shopping.  It was even more fun when pasta started spilling out and Zoe rolled over it!

Before everything shut down we managed to get away for a few days of fun.  We rented a cottage right on the beach.  The cottage had this awesome hot tub and the girls loved it.  

I loved seeing the lake from the cottage window.  Lake Huron is so big that sometimes I forgot it was a lake and not the ocean.

We are all enjoying roller blading along a path by Lake Ontario near our house.

Rain doesn't stop us from going for our daily walk!

A Long December

December has been a long and hard month for us so far. But I am hopeful we will turn a corner soon.  The end of November Zoe had a cold that turned in to double lung pneumonia.  While is hospital, her body did something called "third spacing" which means the fluid from her veins leaked in to her abdomen and lungs so her lungs filled with fluid.  Zoe required a high flow oxygen machine to help her breathe.  It was a very stressful few weeks.

Now Zoe is home and for the past five days we have made the most of time by getting our Christmas tree, decorating, and spending time as a family.  A few days ago Willow started to have a cold which Zoe now has.  Zoe broke out in her full body immune response rash and threw up last night.  So now we are watching her closely, keeping her hydrated and hoping this passes without another trip to the hospital.

And so we are waiting...

I wrote this poem a few years ago and as I struggle to put in to words what I am feeling right now I thought I would share it.  The image of sunshine and hammocks sounds pretty nice right now on this cold winter's day.

"I Know I Am Lucky"

These months and days that add up to years.
A lifetime
Of joy.
And a lifetime
Of pain.
Of waiting.
Always waiting.
For life to go on.
For life to start again.

We sit here, holding our breath
Hoping the next breath will not be so painful.
And time passes.
People move on.
Move forward.
People pass us by.
And here we are.
Waiting.
In pain.
Such intense pain.
Indescribable pain.
The pain of waiting for more pain.
And this life is passing us by.
Slipping through our fingers.

Smiles.  And laughter.  Running around the yard.  Pushing Ailsa higher and higher on the swing.
Pretending to eat her toes.
Pretending to high five her feet.
Pretending to care.
When all I feel is this pain.

But that's not fair.
Because I was there.
And I did smile with the sun on my face.
And I snuggled in the hammock as I recalled another day, long ago when Ailsa, Zoe and I snuggled in that hammock.  Ailsa wrapped up in her newborn blankets.
And these are my memories.
My grains of sand slipping through as I try to just breathe
And be
And feel
Not grasp.
Because there will be nothing left to hold on to if I do not feel the sand as it slides through my fingers.
And THAT is my fear.
THAT is what I fight against.

This is my life.
My one life.
And these are my beautiful children.
And my days are filled with pain
But there is sunshine too.
And swings.
And hammocks.
And I want to feel it.
All of it.
Even if there is a lot of pain.
Because I want to remember this.
All of this.
Because this is all I have.

This.
Just this.
And nothing more.
But all of this is a lot more than nothing.
And I know I am lucky.

Pumpkin Time Already!

We went to Knox's Pumpkin Farm this year and it was great.  There is a $10 admission fee per person but they did not make us pay for Zoe or Willow (kids under 3 are free).  Everything was accessible except the pumpkin patch itself but they did have lots of pumpkins around for people who could not ride the wagon to the patch.  And they were nice pumpkins, not scabby small ones.  The corn maze was wheelchair accessible, as well as their walking paths and even their portable toilets.  Their barn (with lots of animals) was mostly accessible- just a small 2 inch step to get in and out.  And their staff were really friendly and respectful- they said hello to Zoe (as well as the other girls) and made eye contact while chatting with her.  We will definitely go here again next year!   

It has been a busy couple of months.  Zoe is doing great now that she is healed from her surgery and things are starting to settle down with her bowel.  She doesn't usually have any pain from her stomach and bowels throughout the day!!!!!  And she does a great job with her hour long potty routine.  She is very proud of herself and enjoys being clean throughout the day.  Zoe has put on a little weight and she has more energy.  She is still waking at night with either pain or having a bad dream or who knows- we haven't sorted that out yet.  She usually calms down pretty quickly when she cuddles with daddy.  She settles with me eventually but she is (and always has been) a daddy's girl!

Back To School

Zoe has had a smooth transition back to school this year.  She has the same teacher as last year so she started academic work right away.  Usually at the start of the year Zoe plays dumb and the teacher ends up having low expectations and Zoe gets a lot more free play time until the teacher finally catches on.  Zoe is not thrilled with being challenged right away but she really likes her teacher so I think that helps.  One big disappointment for Zoe is that her boyfriend (yes, I did say boyfriend) who was in her class last year switched to another class.  We all believe this is for the best for both of their learning but Zoe still gives her teacher a stink eye and complains about it frequently.  The teachers and nurses at school have all commented on Zoe being in a great mood every day and obviously more comfortable.  They are all excited to see this change.  And it confirms for us that Zoe is truly doing better, it's not just us being hopeful and seeing what we want to see.

End of Summer and Fall Trips

We always travel with Zoe, no matter how she is feeling but it was great to go on small trips at the end of summer/ weekends in September with Zoe feeling more comfortable.  We went to a cottage near Grandma's house in late August. The girls loved spending time with Grandma while canoeing, swimming and playing at the beach.

 We visited Hamilton (where Gavin was born) and went to a beautiful park he used to go to as a child.  The girls enjoyed driving by his old house and listening to stories about his early childhood.  We even manged to see his old dentist's building- exciting stuff!  We stayed over night in a hotel where we enjoyed swimming.  The next day we went to African Lion Safari and had an awesome time.  It was really interesting seeing the animals in a more natural environment and seeing different animals interacting with each other.  We saw herds of elephants, zebras, giraffes, deer and caribou as well as lots of others.

 The Starlight Children's foundation had a cruise on a pirate ship in the Toronto harbour which was awesome!  It was a live theatre experience and the girls got to play along. 

 In September Emily's House (the respite place that Zoe goes for overnights) had the first ever family camp for children who are medically fragile.  It was amazing!  The camp was at camp Ooch (a camp for children with cancer) so the facilities were beautiful and mostly accessible.  There was early morning fishing one morning and we decided we were not going to do it since it would involve waking up early.  Apparently the girls had other ideas.  Zoe was up at 5:30am excited and ready to go!  The other two woke up soon after that.  

   Another fun thing we did at camp was canoeing.  The staff (including Zoe's complex care doctor) were surprised at Zoe lying in the bottom of the canoe but this is where Zoe loves to be so she can feel the motion of the water.  Ailsa was excited to ride in a canoe with a staff member on her own and Willow was happy to sit tall and big in the seat next to mommy.  She even helped me paddle....it was so helpful!

There were lots of other fun activities including a wheelchair accessible high ropes course.  And Zoe was really excited to build a picture frame in their wood shop with her complex care doctor who she loves.  It was a great surprise to see he was one of the doctors at the camp that weekend.  It was great to have him see our family having fun and in a different context then the hospital.  This is the doctor who has been with us at some of the hardest times in our lives when Zoe has been so sick.  So it was really fun to interact with him in a different way.  And it shows him what we are talking about when we tell him about our various trips and fun outings.  I don't know if he really understood what that looked like for our family and how much joy Zoe gets out of it.

We really hope they have a camp again next year.  It was great being around children who have more needs like Zoe.  We have been to the Easter Seals Family camp (which is also a lot of fun) but usually Zoe ends up being the child with more disabilities and we are always running from one program to another and feeling a bit left out.  The pacing of this camp was perfect- lots of time for us to get our kids places, have time for changes in between and a med hut in the middle of the camp for easy access to medications.  And if a program ran over time, no problem- the staff would keep on going until all the children had a turn.  It was also fun talking to other parents.  While waiting in line on the beach Zoe was doing her usual coughing thing and the other parents did not stare at her with worried expressions that she was sick and spreading disease.  In fact, one mom said, "I'm so jealous of her cough, that is amazing."  Her son needs oxygen and does not have a productive cough like Zoe which leads to more lung infections.  So there I was, standing on a beach, on a beautiful day and bragging about my daughter's cough!