Monday, November 18


Earlier this month we were suppose to go to camp.  "Suppose to" was the operative words.  Seattle Children's had sent an invitation in September for us to go to a weekend with some of their staff and volunteers to what looked to be a wonderful and magical looking place called Camp Korey.

Each weekend at this camp is generally a different kids with 'special needs' group, we had been invited to 'pelvic restoration camp' because Tommy's Hirschsprung Disease caused him to lose most of his colon.  Some friends were also going and I was beyond excited.  I had a list of questions for my friends like "toilet training" and "their thoughts on inclusion" and "sleep training".

I had generated excitement in Liam and Colin too!  I was reciting what activities would be enjoyed and reminding everyone that there "is even smores around an indoor safe campfire!"  So after we met all the pre reqs for camping, applications submitted, emergency contact lists, special accommodation lists, last minute flu shots.... bags were packed and crammed in the van.  Tommy travels with a lot of "just in case" accoutrements and all had been meticulously packaged in luggage.  Day before we are to leave, cue the big illness in Tommy.  Low grade fever and junky cough.  We met with our pediatric folks and our local immunology peeps and the group conscience was NOT to go to camp for the weekend.   It was a good decision, 7 days later Tommy was diagnosed with pneumonia and put on a coordinated home care plan.  All decisions are good right?  No regrets.  Right?

All the thoughts of our family doing a 'normal activity' evaporated.  Liam was sad we weren't going to camp.  Us as parents were sad we wouldn't be able to seem somewhat normal for the weekend and be able to talk to other parents about truly shared issues and struggles.  I stepped into my shoes and trudged to my van to unpack that evening and even kicked the tires thru my tears as I ripped all the luggage out and spat bitter words into the night sky.  Why can't my entire family enjoy one activity at one moment in time together?  Someone is always missing, or Tommy inevitably is sick. 

I've been struggling with concerns about Liam and how being raised with a sibling with chronic illness effects him.  Even Hannah and Nate while away at college, get to hear of current "Tommy illnesses" during our twice a week calls.  I know Tommy's illnesses effect them, and seven years ago when Hannah and Nate were just 12 and 11 they spent Christmases in Seattle Children's hospital and Ronald McDonald houses.   They have tube fed Tommy, given him nebulizers, changed his diapers at age 5 (insert visual of scared tazmanian devil smeared in poop). 

Don't get me wrong, I love Tommy and will go to the ends of the earth for him. Everyone in our family have and would again.  I recognize daily that his joy is more Christ like than any I will ever know in this world. All of that is a given.  But sometimes, I wonder while raising a chronically ill child, have I correctly struck that ever so ginger balance in motherhood of raising children and being a wife all while still keeping Tommy safe and healthy.

Sometimes that ginger balance feels more like driving in the dark night and hitting one of those large deep and wide puddles, the kind that you can feel the weight of the water slow your van, and hydroplaning.  The kind where even moving the steering wheel left or right doesn't matter.  The kind of hydroplaning that all you can do is hope.  Hope that the momentum and direction was right before you ever hit the puddle.  I think ours was right. 

While I was reading this wonderful family's blog post I was reminded again how I question daily my mothering.  My purposeful actions each moment of the day.  I try to find the middle path as our SLP reminded me of last week.  Not the extremes, the middle.

And with a very sweet surprise call from my favorite social worker at Children's last Friday, I was reminded to find the middle again, I lit those candles that glow with battery lifelikeness so that Tommy can't burn his hands on, and line my bathtub and relax and think about my entire family and how I can continue to love loving each one of them.  And I plan our next camping trip.  And I start to list all the benefits of the next place and time and dream of our family together making smores.  And hope.

Tommy Adventures