Glimpses of Light in This Long Dark Tunnel

Treading Water

Ever since Zoe was born, I've felt like we were treading water. After the first initial weeks of fearing that Zoe would not live, we received her diagnosis of 1p36. This was better than what we thought but not a hopeful diagnosis. The medical articles we were given were very negative and stated many things our baby would never do.

Still, we felt hopeful.

As time went on, we met other families who have children with 1p36.  This was great in many ways, a little overwhelming in others.  We glimpsed what the future could possibly hold.

And still, we felt hopeful.

As time passed, we realized that Zoe's disabilities were in the "severe" range.  We saw that some children with 1p36 walk, talk, feed themselves, etc.  We were hopeful that would be Zoe.  But it seems that Zoe is not one of those "lucky" children.  We love Zoe for exactly who she is.  And we are lucky that every day we see Zoe push herself and move forward.  Progress does not happen quickly and takes a lot of effort from all of us.  But still, we see Zoe gain new skills all the time.

So still, we feel hopeful.

Taking care of Zoe is physically draining.  But most of the time it is the emotional strain that gets harder and harder to cope with.  We struggle to get through the day, just to survive.

Here we are, treading water, watching other families on the shore making sandcastles with their kids.  Running around, splashing in the water.

It gets a bit lonely in the water.  Most of the other families treading are like us- too busy and exhausted to keep in touch much.  Just getting through the day takes all of our efforts.

But look closely.  There on the shore- a child sitting by himself, cramming sand into his mouth.  Practically choking on it.  Just like Zoe with sand.  Hey- if we get back on the shore for a visit we can chat with that family.  They'll understand if our only communication is postings on a blog.

Last year Zoe spent 196 days at the hospital.  How do we maintain any type of life for her, for us when over half of her year is spent staying at the hospital or waiting around all day in a clinic?

And yet still, we do actually feel hopeful...
Most of the time.

Gavin

This is Zoe's blog so I won't comment too much on Gavin.  But his being sick has put a lot of strain/stress on all of us.  Physically, Gavin is just starting to take care of himself again.  For two months I have been physically caring for three dependent people, two of them with serious health needs.

Gavin's recovery will continue to take more time, perhaps months.  I am not sure how much more I will be able to do physically for my family.  I am sleep deprived.  Exhausted.  My muscles are sore.  And on a good day I get to eat three meals. 

And yet, I have to stay hopeful.
Because this is our life.  What else is there to do?

People in our lives have been incredible in showing support- dropping off meals, helping with the girls, staying with Gavin when I need to go to an appointment with Zoe, giving us gift certificates and money.  We are so incredibly grateful for this support.

And I guess that is why I have to stay hopeful.  Because there are good things and good people in our life.  And we enjoy the little moments- like time spent outside, seeing Zoe smile again, and celebrating a very important birthday!

Zoe loves the wagon, Ailsa still isn't so sure.  Gavin walked around the entire block himself while I pulled the girls!

Zoe's sign teacher says that Ailsa has "ASL eyebrows."  This is one of her favourite expressions at the moment.  Zoe is signing "Ailsa."

The girls got all dressed up for Ailsa's first birthday last Tuesday!!!  We had a wonderful party with just grandparents and us.  It was a beautiful day so we ate out on the back deck.  Ailsa was hilarious with the cake.  No smashing the cake like we expected, instead she carefully picked at it and ate the entire piece.  Zoe tasted her piece and signed "All done."  When I asked her what to do with her piece, she signed "Ailsa."  I don't want it- give it to my sister, she obviously loves cake!