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!

Pain Pain Go Away

Zoe had surgery three weeks ago and everything went very smoothly and her recovery has been better then we had expected.  The surgery itself took 2 and 1/2 hours instead of the 4-6 we had been expecting.  Because Zoe has a long appendix (something we did not know until she was in the surgery since the appendix is not something you can see on any images unless it is inflamed from infection) the surgery was less complicated because they were able to connect her appendix to her belly button area without making a passageway.  So the procedure involved less moving things around inside and less stitching.  Perhaps I should say what procedure she had so that you can see what I am talking about.

Zoe had a MACE procedure. MACE stands for Malone Antegrade Continence/Colonic Enema (or just plane Malone) and it is surgery.  Malone is the guy who perfected the procedure, Antegrade means moving forward, the C stands for Contience, which is the goal or Colonic which is the part of the body (colon) involved, Enema is introducing fluid to clear out the bowels of poop. The MACE surgery involves bringing the appendix to the belly button to create a stoma or a surgical opening/hole. Usually this hole is hidden in the belly button. It is tightened inside so that fluid can go in, but nothing drains out.

A catheter goes in through the stoma, through the appendix and into the colon. Fluid goes through the catheter and into the colon flushing it forward and out.  So the MACE uses the appendix to move an enema solution forward through the colon to provide continence (meaning no more pooping in the diaper- only having bowel movements on the toilet) and prevent constipation.

For over a year we had been doing everything we possibly could to address Zoe's severe constipation.  At one point we were giving her enemas (through her bum) twice a day with lots of laxatives and still she was constipated.  Why is constipation a problem?  Firstly, constipation causes chronic pain for Zoe.  She is in pain even when she is not trying to have a bowel movement.  And she was having pain every single day to the point she was not sleeping well, she would just cry and cry even if we held her and tried to comfort her.  Second problem is that because Zoe was not emptying her bowels properly, there was pressure on her bladder and constant small loose BMs in her diapers which led to urinary tract infections (also known as bladder infection).  Zoe had over a dozen infections in the past year and was critically ill because of several of them.  And lastly, did you know that constipation can be a seizure trigger?  We didn't realize this before but we know it now!

Zoe was part of the discussion about various ideas/ solutions for her constipation and she was so excited to get the MACE.  She is still excited every day even though we are still adjusting things so she is still having bowel issues.  But- the constipation is finally clearing up!  So at least that pain is better for Zoe.  Now we are just tweaking what combination her body needs so she can have one single BM a day on the toilet.  What an exciting prospect!

How Is It Going Now?

For now, Zoe continues to have pain every day because she is still healing from the surgery.  Also, she has a catheter sticking out of her belly button that shifts and moves at times and I imagine is not always comfy.  That catheter will be removed next Monday and then we will only put the tube in to do the enema on the toilet and it will come out right after.  So instead of shoving a tube up my child's butt every day, we get to shove one in her belly button!  The joys of parenting I never even imagined for myself...

It is so hard seeing Zoe in pain.  She is not a person who complains and she has a high pain tolerance so when she is crying, it is just heart breaking.  Although Zoe is bored recovering at home and taking it easy, it is what her body needs.  So most days we are home all day long. And I am beginning to feel like Zoe- cooped up and in pain.  Pain from watching her struggle still.

I know the MACE will get better.
I know this pain will pass.
I know this.

However, I also know that pain will continue to be a part of Zoe's daily existence.  She does amazing coping with pain and has always done so but I guess my mind still hopes for that magic fix that makes it so she can have more good days then bad.  And who knows, maybe this MACE will turn things around and the good days will be more frequent then the bad days.  They were that way up until a few years ago.  It is so hard to even get a handle on what Zoe's baseline is since she is constantly battling infections so she is always coming down with something, sick with something or recovering from something.  But I know getting on top of her bowel issues will be a push in the right direction.

Parents and Grief

When we had Zoe, we had no idea she had any issues until the moment she was born.  As soon as she was born (5 pounds, 3 ounces at 42 weeks gestation) it was obvious something was amiss.  Those first weeks, months were so busy and scary and exhausting.  When things slowed down Gavin and I began to understand how people talk about grieving the child you were supposed to have, grieving the healthy child, etc.  Because Zoe's issue is her chromosomes and her chromosomes literally make Zoe who she is, I can not begin to separate out where 1p36 ends and Zoe begins.  And so I can truly say I would not change Zoe even if I could.

Having said that, I still grieve sometimes for what could have been.  Every birthday, every new milestone missed, every hospitalization I feel the pain of wishing Zoe did not have these medical issues.  Sure- keep the 1p36 but make her one of those less affected kids who are less disabled and healthier.  But, that is not Zoe.

Gavin and I have always tried to let Zoe be a kid and do normal kid things.  As she has grown bigger, stronger and more medically complex this has become harder and harder to maintain.  But- we persevere.  Because really, what else is there to do?  What else can we do with our "one wild and precious life?"

Camping

The week before surgery we went camping in New York in the Niagara Falls area.  We try to camp every year with my brother Joe and his family (from Pennsylvania) and my cousin Elena and her family (from Massachusetts) but the last two years that did not work out.  So we were very excited that camping could happen this year.  And even more exciting- my brother Paul and some of his family drove out from New Mexico to join us and my sister Kathy and some of her children and grandchildren drove out from St Louis to join in on the fun.  So we had almost 30 people between our 5 campsites!  It's a good thing I booked us in a more isolated part of the campground.  We were not a quiet group!

The kids had so much fun running back and forth between campsites.  We had fun sightseeing with everyone and just hanging by the campfire.  And we learned just how far Gavin and I are willing to go to give our children these amazing experiences.  Let's just say, we had a dedicated poop tent for Zoe's enemas and toilet and leave it at that!

I truly believe that Zoe getting all that fresh air and having such a fun time the week before surgery really helped prepare her body for the procedure.  I'm sure the week of antibiotics and extra enemas helped too, but seriously I do think Zoe being reminded of how good life is helps her gather her strength to fight when the time comes.

If you can't see us- the Canadians are all wearing red...so is Paul, but that's because he is a wannabe Canadian...or maybe he just likes the colour red...

Best Trip Ever!

In May we went on a fantastic holiday as a family.  We drove down to Bayonne, New Jersey (across from New York city) and boarded a cruise ship for a 9 night/ 10 day cruise!!!!!  (It actually ended up being a 10 night, 11 day cruise because of a medical emergency on board). We had an amazing time and the Royal Caribbean staff were great.  When we were booking the staff was very helpful.  I explained that we needed a balcony due to Zoe's current medical needs and there might be days she can not really leave the room so she needs to be able to at least enjoy the sunshine and fresh air.  The woman gave us an amazing deal so we were able to stay in a Family suite with two bathrooms!  Most exciting is that the one bathroom had a full size tub which made bathing Zoe a lot safer.  Can you imagine holding Zoe upright in a small shower stall while soaping her?  Been there, done that and it is just getting too difficult now that she is so big.  The bath was great for the other girls as well.  When Willow was overexcited we threw her in the bath to calm her down before bed.  And the very first night I enjoyed a long soak with a nice glass of wine and a good book.

The staff on the ship were always very helpful and friendly.  Royal Caribbean has an Autism Friendly program (this includes any child with disabilities).  This meant Zoe could attend the play programs by herself and we were given a phone in case the staff had any concerns.  Zoe, being 12, should have been with the teen program but given her needs, we requested that she be in the same play group as Ailsa and the younger children.  They had no problem accommodating this request.  The staff in the play rooms were not the best staff ever.  Overall Gavin and I were not impressed with the programming (the toddlers mostly watched TV!).  And we were not happy that staff did not make more efforts to include Zoe in activities but we did recognize that there were sometimes over 20 kids with two adults!  So I don't think they were specifically neglecting Zoe, I think they just did not have enough staff or training.  It was nice to be able to get small breaks from the children so we could have some time to ourselves.  And Zoe was excited to go to the playroom even if she just sat in her chair and played with her own toys most of the time.

 We all really enjoyed the balcony.  All that fresh air and sunshine was amazing.

 A nice Canadian offered to take our picture while we were on a tour bus trip to see the island of St Maarten before going on our submersible boat trip.

Despite waking up with a high fever, hives all over her body and an obvious bladder infection, Zoe said she still wanted to go on the submersible boat tour we had been planning for months.  Since Zoe can not scuba dive, she was really excited to experience underwater in this special boat.  The divers fed the fish right by the windows so we could see the fish more closely.  Even when the divers weren't there, there was so much to see and the water was so clear and lovely.  We wish Zoe had been feeling better but as always, she pushed herself to enjoy the day.  And we came prepared so Zoe started antibiotics right away and was feeling better in a day or two...until her little sister gave her a gastro bug she picked up in the nursery.  We were glad the trip was a longer one so that despite all of us getting ill, we still had plenty of good days.  

 Of course an exciting trip is an excuse for mommy to buy matching dresses!  The girls loved dressing up for dinner.

The iFly was by far the best part of the cruise for both girls.  When I booked the cruise I spoke to the sales woman about the iFly and whether Zoe could do it too.  So many places use safety as an excuse to exclude people with disabilities.  She assured me that as long as Zoe did not have frail or brittle bones that might break easily then it should be no problem.  Still, I warned Zoe that when we got on the ship, the people running the iFly might say differently.  The woman who worked with us was amazing.  She was so respectful towards Zoe.  She asked relevant questions about Zoe's mobility and potential problems with bones or muscles.  She never asked "what is wrong with her" or even asked for a diagnosis since it was irrelevant.  She asked another staff to be on hand to help with Zoe just in case and she gave Zoe her full minute ride just like everyone else.  Zoe LOVED the iFly.  I am sure the feeling of flying felt amazing to Zoe.  She loves her freedom and anything involving movement.  The woman saw how much the girls loved it and encouraged us to come back another day toward the end of the cruise so we could have another turn.  Initially Ailsa was unsure about flying but she decided to go a second time and she really loved it.  I think knowing what to expect helped her enjoy the second time even more.

Another great part of the cruise was the day we spent at the beach.  It happened to be Ailsa's birthday and it was a perfect day.  The weather was awesome, the beach was beautiful, everyone was healthy and we had such an amazing time.  We walked the extra distance to get to the beach that was less popular so it was not so crowded.  We ate lunch right there at the beach.  Ailsa really enjoyed her special day.  I'm not sure we will ever be able to top that birthday!

So what's our next adventure?  In July we are camping for a week near Niagara Falls New York with two of my brothers, my sister and my cousin and their families.  It is going to be busy and loud so Zoe is very excited about that.  She loves how much noise my family makes!

After that, Zoe is having surgery on July 15th.  She will be in hospital at least a week and will take most of the summer to fully recover.  That is one of the reasons we really wanted to take a trip like the cruise.  Zoe's health is becoming a bit more complicated and unstable these days.  She has bowel issues which cause her a lot of pain and despite spending almost two hours every day giving Zoe enemas, she continues to have serious constipation to the point she has debilitating pain and she has not been gaining weight.  We think/ hope the surgery will solve the constipation which will get rid of her pain and hopefully make her able to better digest her food.  We also hope that solving her bowel issues will help decrease these persistent bladder infections Zoe is getting.  She has had four since March and one of them made her have a prolonged seizure which then caused other problems and necessitated a hospital stay.  Every time Zoe gets sick there is a cascade response in her body and sometimes the result is literally life threatening.  Her doctors were very supportive,  encouraged our trip and gave us emergency medications to travel with.  We researched the ship and knew it had an excellent health care facility and could handle an emergency but we were happy not to experience it for ourselves.  Although, I did get to see the doctor on board with Ailsa who ended up with a throat and ear infection.  As always, I was grateful for our travel insurance!

It was really nice seeing the girls have fun and just be kids.  Sometimes when Zoe is crying with pain, Ailsa sits beside her, reads to her and rubs her head (a habit she has continued since last year in the ICU).  Willow will frequently gather toys to give to Zoe in hopes that it will distract her.  Sometimes Willow crouches besides Zoe and pats her back while saying, "Zoe-oe-oe-oe."  It is such a sweet scene but it breaks my heart.  I loved seeing the girls playing at the beach or on the ship.  They are amazing sisters and I am glad they have these memories and photos to enjoy.

Where Have I Been?

There have been some really heavy things happening in our life and some really great things too.  It's difficult to sit down and write what is on my mind.  I don't want to make my posts too heavy, but I also don't want to pretend all is well.  I have heard from many parents that they appreciate my honesty.  My struggles have brought them hope because they see the struggle and then they see the joy that is still possible.

Ailsa, Ailsa, Ailsa

Ailsa is starting on a cholesterol medication...at 8 years old.  We knew this was coming, we have seen her numbers go up, up, up.  We knew this day would be here.

And still...

Still...spending 8 hours at the hospital today to confirm that she needs to start this medication now, right now, today has broken my heart.

Again and again my heart has been broken and I take it in stride, I really do try to.  But some blows really hurt and I just feel so helpless.

Ailsa has asked that I not share a lot about her health issues on Zoe's blog and so I have not.  I respect her privacy.  But it does tie my hands when I have so much I want to express.  And so, in deference to Ailsa I will keep it short and simple:

Ailsa's kidney disease is progressive.
She is doing way better then they thought she would.
She is doing way better then other children with her syndrome.
And still.
Still- her kidneys are failing slowly and eventually she will need a transplant.
As her kidneys fail slowly, they are not able to filter out certain things so it causes all sorts of other problems.
We knew this was going to happen when she was diagnosed but still...

Still...it really fucking sucks and there is nothing I can do about it.

Ailsa does everything right- she eats well, she takes all her medications, she avoids the foods she is supposed to and still...

Still her cholesterol is twice that of a 400 pound person who smokes and drinks all the time.

And still her kidneys slowly fail.

Every appointment shows her numbers getting worse and more medication is added and Ailsa cries at the unfairness of it all.

And so today, my heart is broken but I decided to start blogging again.

We went on an amazing trip as a family recently and I want to post all about that, but first I had to get this off my chest.

Zoe is also struggling and will have a major surgery on July 15th but perhaps more on that another day.  For now, I needed to just start sharing again.

Zoe was upset last night because Ailsa had her appointment today.  She said she wanted to go with Ailsa, we explained why this could not happen.  So Zoe asked that we bring her special turtle (the one she bought with her own money during our amazing holiday last month) to the hospital today for Ailsa to hold on to.  She also reminded me to bring books and toys for Ailsa and to give her a hug (like I would forget!). Zoe is always looking out for her little sister, just like big sisters should.

And still...
Zoe is a 12 year old and reminded Ailsa that the turtle was not hers to keep- she has to give it back at the end of the day- that just made me laugh and laugh.

I love those girls.

With all my broken heart.