Sand, anyone?

We celebrated LIFE this weekend at Pinery Park.  Last year at this time, we were hoping and praying that Caleb's chest tube would be removed and we could be released from the PCCU.  It's a different story this year.  This weekend I was more concerned with how to deal with talking back, disobedience, and bedtimes.  Sigh.  Typical 5 year old problems.  One part of me gives thanks that he can be so difficult (because I know an alternative), and then the parent part of me takes over--I've got to deal with this behaviour.  As a friend said to me today, he spent this past year getting the snot kicked out of him, and now he's ready to fight back.  I know he's a tough little boy.  

But, other 5 year olds (hopefully) don't have their parents blogging in public about their behaviour, so I won't belabour the issue.  Suffice to say, Caleb is normal. 

We're happy to be a year away from what we experienced last year, and to know that our "normal" doesn't include frequent hospital stays and Caleb feeling sickly.  The unfortunate part is that we aren't even half way into treatment.  We still have over a year left to go before we can say goodbye to chemo.  We still have over a year of our weekly clinic visits, steroids weeks, flu season, etc.  Caleb seems to be more tired of it (and thus, so are we).  As he gets older, he's beginning to notice differences between himself and other kids his age.  Again, typical 5 year old behaviour, but with a twist.  Other kids don't have ports to take care of.  Other kids don't go to the hospital so often.  Other kids don't (but should) wash their hands so regularly.  Other kids don't wear a hat all the time at school or have to be so concerned that they may get a sunburn (treatment slows his cell replacement, and last summer's drugs impede his ability to heal from sun exposure).  Other kids don't take a shower after going to the beach (we're actually not supposed to let him go in the water at all, but we've made a quality of life decision.  I have no idea what kind of accountability we have to the hospital on that kind of thing, but we've decided we'll do this, exercising caution).  The list is long.  I repeat, typical 5 year old behaviour, but with a twist for our own story.  Daily reminders that although things appear "normal," our reality is that we are still fighting Caleb's leukemia.

I don't mean to gripe, but I do mean to give a bit of an idea of how things are going.  People often ask, and it's really hard to answer.  On the whole, we have so much to be thankful for.  We'd never choose this path, but since we're on it, I do suppose things are good.  A lot has changed since last year.  But there are still many low times, and times of high stress, and times of grief, amidst the joy.  But we know, and we stubbornly say, that we have much to celebrate.

Speaking of celebrate, Caleb received his gift from the Children's Wish Foundation last week.  After all of his memorable camping experiences last year in Aunt Sara & Uncle Ralph's trailer, Caleb gave his wish for a camping trailer.  Some people have commended Tim and I for planting such a good idea in Caleb, but I'll maintain that this was his idea!  We're pretty happy about it, but we would have wished for a basement renovation instead (Caleb, don't you want a playroom in the basement?)  We're very happy with the new trailer, though.  The timing of receiving the gift was perfect, a year after diagnosis.  We were really able to get out and enjoy the fresh air this past weekend.  We invited family to come and join us as we celebrated Caleb's health at this stage in the journey.  It was a great time. 

Here's Caleb, the Wednesday morning that we picked up the trailer.  He's about to take his first steps inside.  We have a lot of great memories to keep from this weekend.

 (learning about trailer setup can be quite boring, particularly when there is a spectacular mud puddle nearby)

A dry trailer on a wet morning,

Caleb and cousin Luke got to share Caleb's bed in the "pop-out" on the side of the trailer, 

enjoying the bike trails,

Aleah playing in the sand,

cousin Allison contemplating Lake Huron,

taking a march through the dunes with Uncle Darren,

...and a snack at the end of a hike on the Pine Trail.

Blessings to all.  Carpe Diem.