The 3 day weekend

A beautiful sunny day near the beach in Kauai.

The word "beach" often conjures up images of warm sunny days, light tropical breezes, a gentle surf, and sand between your toes.  Surfers are busy trying to catch that perfect wave.  Sunbathers are cooling themselves in the refreshing ocean water, and children are constructing fanciful sandcastles.  Throw in a few palm trees for good measure, and that's the idyllic image of a day at the beach. 

A beautiful stormy day at the Oregon coast.

Beaches in Oregon don't exactly fit that mold.  Our coastal weather is more rain than sun, and our ocean temperature would probably best be described as frigid.  You have to be a real hardcore surfer with a high quality drysuit to surf off our coastline.  Beachcombers are more often seen wearing coats and sweatshirts than swimsuits and flip flops.  Oregonians visit the coast to sit by the fireside, drink hot cocoa, and watch the storms come in.  It's just a whole different kind of a "day at the beach."

Nonetheless, it's a fun place to visit.  They have lots of amazing restaurants with northwest fare and fresh seafood.  There are plenty of fun family things to do too. There's everything from miniature golf to bumper car rides, and in Newport, Oregon there is an aquarium that educates visitors about ocean habitats and animals.  Most beach towns also have lots of shopping for those who love the "sport" (of shopping).  There are plenty of specialty stores and quaint little shops.  All and all, the Oregon coast is a great place to visit.  Just be sure to bring warm clothing and an umbrella.

One Friday night Mike came home and suggested that we make a spur of the moment trip to the beach.  It was the start of a long three day weekend, and he thought it would be fun to just pack up the kids (Has he met our kids?  Just kidding), rent a hotel room, and spend the weekend relaxing by the fireside.

It sounded like a great plan to me, and the kids were ecstatic.  We began the process of getting everybody packed up and loaded into the car.  We brought all the usual stuff...clothes, beach toys, and swimsuits for the hotel pool.  Then we loaded the important stuff, Christopher's medical supplies...tape, gauze, 2 cases of enteral nutrition formula, NG tubes, feeding pump, feeding backpack, 500ml bags, 12000ml bags, extra tubing, fiber, prescription medications, syringes, drain bag, hydrogen peroxide, topical antibiotic, and op site band aids.  Did I forget anything?  I hope not because most of this stuff you can't just pickup at your local drug store.  Forgetting something is NOT an option, so we checked, and re-checked, and checked again to make sure we had everything.

Then we were off to the beach for a nice long weekend of eating, swimming, and relaxing.  Our family had been through so much.  We had been under incredible stress and had been living apart for months.  I was thinking that Mike must be some kind of genius.  What a great idea for a way for our family to reconnect and just have fun together.  Leave the chronic illness at home!  It's going to be nothing but kids splashing in the pool and ice cream cones at the local ice cream parlor.  Well, that was the plan anyway...

The beach was about an hour from our house.  We arrived at the hotel, had some dinner, and the kids swam at the pool for awhile.  Everything was going as planned.  It almost seemed like we were a normal family.  Then it was time to put the kids to bed.  We drained Christopher's stomach, hooked him up to his feeding pump, and pushed the button to start his nightly meal.  Everything was going just as planned.

In the morning we woke up and realized that plans often change.  We had a problem.  At some point during the night Christopher's pump had stopped working!  Half of the formula was still left in the bag.  We got out all the instructions and troubleshooting guides that we had.  Mike is good at fixing things, but even he couldn't fix this.  I decided to give the medical supply company a call to see if they could help, but it was quickly determined that the pump was broken. We would need a replacement.  The good news was that they had one in stock, and they could get it to us right away.  The bad news was they didn't deliver to the beach.  We would have to come and get it.

Christopher couldn't go the entire three day weekend without his feeding pump, and unfortunately you can't pick one of these up at the local Riteaid or Walgreens.  We would have to go get it, but that would mean about a three hour (both ways) trip in the car.  We had a decision to make.  Should we pack up and just go home, or should we make the three hour round trip?  Since we didn't want to spoil this mini vacation for the kids, it was decided that we would make the round trip.  However, the idea of three hours in the car with three disappointed toddlers didn't seem too appealing, so Mike volunteered to make the trip alone.  I would stay with the kids at the hotel and distract them with food and pool until daddy returned with the pump.

I felt so bad that Mike had to make the trip all by himself, but it was the best solution to the problem.  Three hours later he was back with the pump, and I was very glad to see him.  Christopher had been without his feedings for many hours, and he was letting me know it.  It would take a couple of hours of being hooked up to his feeding tube before he would get the sensation of being satisfied.  The slow dripping tube doesn't provide for a feeling of instant fullness, so after five hours of crying and fussing we were finally back on track.  Now we could get back to that relaxing, worry free vacation.

The rest of our vacation was pretty uneventful.  We were able to enjoy ourselves.  It was the much needed break that we all needed, and we learned something very important on that long weekend.

Makin' memories!

We learned the value of making time for our family whether it is at home or on vacation.  For us, chronic illness would always be a reality, but we learned that it was important to find a way to still do things and go places as a family despite it.  It would just take some organization, preparation, and a little creativity to make it happen.  We couldn't allow chronic illness to become an excuse not to do things together.  We couldn't allow thoughts like... "it's just easier to stay home," or "we better not go because something could go wrong" to get in the way.  Besides, we wanted Christopher to understand that he could do things and go places even with his feeding tube.  We would show him how it could be done and teach him some valuable life skills in the process.

Notice the word LIFE.  We wanted to teach our son LIFE skills.  Christopher's prognosis was very unclear.  We really didn't know whether he was going to live or die.  The doctors just weren't sure what was going to happen, but we decided that we were going to enjoy the time we had with him whether it was measured in weeks or years.  Until God showed us otherwise, we were going to assume that Christopher had a long life ahead of him.  He would need all the important lessons in character and life skills to take with him, so we would teach him to live life "out loud" and "to the fullest," no excuses allowed.  We wanted him to learn to be thankful for his feeding tube and figure out ways to live life around it.

If you have never accepted Jesus Christ as your Lord and Savior, you can pray like this:

More tomorrow...