Tuesday, December 23, 2014

The Year in Review

Here we are, at the end of another year.  It's cliche to say, but very true- I can't believe it is the end of another year.  And like many other years, this one seemed to fly by.  I try to pause in my every day life and appreciate the little moments.  We started keeping a daily diary for ourselves and the girls to make note of the small things that happen in our day to day lives.  While this is a wonderful concept, there are many dates we did not fill in this year.  It is difficult at the end of an exhausting day to pause and appreciate all that you have.  And so, once in a while I try for a big pause and a big appreciation of all that we have.

Because what we have in this life is wonderful.

And amazing.

Who am I to be so lucky in this life?

Kidney Disease

This year started off with Gavin and I absorbing the news of a terrible diagnosis for Ailsa.  How can it be that our healthy child has been saddled with kidney disease?  What will happen?  How bad will this get?  Will Ailsa need a transplant?

We still don't know the answers to many of our questions.  And our hearts still break when we give Ailsa her kidney medication every day.  But still, we know we are lucky.

We are lucky because Ailsa is an amazing person who is part of our lives.  She is a gift.  And this gift does not come with a warranty.  Which we, as parents, always want for our children.  We want to know that our children will always be happy, fulfilled, successful, and of course, alive.  But life makes no such guarantees.  And so we can only appreciate this moment.  And appreciate that we have been given such a wonderful gift.

Who am I to be so lucky to have two beautiful daughters?

A Trip of A Lifetime

It is always easier to feel grateful during happy times.  In March this year, we got to go on a Make A Wish trip and it was amazing.  Everything about the trip worked out well, including the fact that no one was sick.  We all had such a great time, just enjoying life as a family.  We still enjoy looking at the photos from that trip.  I love seeing the smiles on the girls faces.  And seeing how relaxed we all are.

Who am I to have such an amazing trip with my family?

G-tube Decision

This year Gavin and I had to make a difficult decision.  Zoe has always grown well (for a 1p36 child) while eating orally.  In the past two years, Zoe has gained some length but had not put on any weight.  This became concerning when Zoe started to tire easily and her body began burning its muscle since the fat stores were gone.  Do you know what it is like to watch your child struggle to thrive?

We decided to get a g-tube so that Zoe could continue to enjoy eating orally but have some extra calories via tube.  Zoe has done well on the g-tube.  She continues to eat orally, in fact she is eating more now because she has more energy and is doing more.  We know we made the right decision, which gives us great comfort when dealing with the annoying aspects of the g-tube.  Zoe has had several g-tube infections and right now we are applying silver nitrate to burn away some of the scar tissue.  This is not an easy thing for a parent to do- when Zoe cries in pain, I am tempted to stop.  But we know this is what needs done.  In many ways we hate that Zoe needs a g-tube and we definitely hate the pain that it has caused her.  But we know this is what Zoe needs.

Who am I to question the path Zoe needs to take in this life?

Every Day is a Gift

Zoe was once again critically ill this October.  We again had one of those moments where we had to talk with the team about how far we wanted them to go in order to save Zoe's life.  We again made the decision that Zoe's life is a life worth living and we want them to do everything they can to save our daughter.  We again had an agonising few days where we could not be sure where the bottom was and how far down Zoe would go.  And then...


Zoe bounced back.  Like she always does.  Like we hope she always will.

We are left feeling scared, helpless and sad.  These things come up so quickly and there is nothing we can do to stop it all from happening.  That thin veil of denial between thinking your child will live forever and knowing that all people in this life die becomes so thin that you see the other side for a moment.  And it paralyses you.  You can not imagine how truly horrible it is to lose someone so close to your heart until it happens.  And we are lucky enough that it has not happened to us.  But these moments, when Zoe's body is shutting down and we stand aside, helplessly, we get a glimpse of that loss.  And it is terrifying.

Still Zoe is struggling.  Another bout of pneumonia and she is still not herself.  She tires easily, is in pain most days, she struggles.  And our hearts break because we want to fix it all.  And we can not.

And yet, here we are.  At the end of another year.  We are all here together.  And so I am insanely grateful.  To have this wonderful family.

Who am I to be so lucky?

Friday, December 12, 2014

Christmas, Already?

Our December weekends are filled with various holiday activities, so we decided to get our tree early- the last weekend in November.  It worked out great- the weather was milder and we have enjoyed decorating the tree slowly.  Last year we ended up having to decorate our plant at last minute because we did not have time to get a tree.  So this year we made sure we would not miss out.  Zoe was very determined to pick the tree that she wanted.  Zoe was in the upsee and kept walking back to a particular tree.  Which was fine, except it was too small to cut down.  Any time I tried to walk away from the tree, Zoe would lock her knees until I let her walk back to it.  At one point, she kept walking over to the tree and then over to the saw as if to say, "Come on or I will cut it down myself!"

After cutting the tree down and riding the wagon back to the old cabin, we warmed ourselves by the wood burning stove and enjoyed hot chocolate with marshmallows.  Even Zoe loved sipping the hot chocolate.  Considering Zoe was at the doctor's the day before and diagnosed with pneumonia and Ailsa ended up at the doctor's the day after with an ear infection, the girls were in a great mood and we all had a good time.  And since we have our van now, Grandad was able to ride with us and not have to take his own car AND the tree fit in the trunk so no need to tie it on!

 Zoe's idea of decorating seems to involve her throwing ornaments all over the floor and laughing about it!

 Ailsa and Gavin made a mini ice rink in the kiddie pool.  Gavin plans to make a bigger rink by flooding the driveway once the weather stays cold enough.  This was Ailsa's first time on skates and she kept saying, "When do I get my hockey stick?"  Perhaps she should learn to stand first!

 Zoe had her last class at Hippotherapy this week.  She will continue with the program again in January.  We have seen such an improvement with her core muscle tone.  Initially, Zoe mostly laid down on the horse but now she spends the entire 30 minute class sitting up.  And instead of four helpers (one at each leg and one at each arm) she only needs two now because she does not throw herself back like she used it.  We are so grateful that the Jennifer Ashley Foundation has helped us with this therapy cost.  It really is making a difference.

The Aquarium

We got a family pass from the hospital to go to the Aquarium.  The only catch- it was only valid Wednesday morning.  We decided Zoe missing school was worth it since we may not get another chance like this any time soon.  The Aquarium is so expensive, it makes it really difficult for us to go.  A great thing about this pass, was that we were allowed to get in to the Aquarium two hours before normal opening time.  So it was very peaceful and quiet.  The girls loved just watching the fish.  The other families rushed by and did not take time to stay and watch very long but both girls loved just sitting and watching the fish.  I love just being in the moment with my children.  

We ended up dangling Zoe over the horseshoe crab tank so she could pet them.  The staff looked a little nervous that we might drop her in but I was not worried- we know what we are doing :)

 There is a clear tube going right through one of the tanks- how cool is that?  Seriously, this Aquarium rocks!  Ailsa loved crawling through it so of course, we had to give Zoe a turn.  

The things we do for love!  I am not sure this is helping the chronic back and neck pain Gavin is having...