It just gets better!

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God bless,

LeAnne


The best thing about being in the hospital is LEAVING the hospital!  Christopher was released to go home after two pain filled weeks.  It was as if a huge weight had been lifted off his shoulders.  He was walking on air and couldn't get out of there fast enough.  The best part was...he would never have to go back! 

He had spent more time in the hospital and endured more painful procedures (13 surgical procedures) at six years of age than most people do in a lifetime.  For the next 10 years he would lead a relatively normal life, except for the way he ate. 

His exact prognosis was somewhat of a mystery.  There was no cure for his condition, but would it get worse?  Would it involve more of his digestive tract as time went by?  Would he continue to develop life threatening infections?  How would all this effect his physical and mental development?  The doctors really weren't sure about the answers to any of these questions.  His condition was so rare that they really didn't have anyone to compare him to.  What they did know was that he would continue to be tube fed for the rest of his life, and that we would just have to deal with the infections as they came along.  There was really nothing more that they could do.

So...we went home.  We went home to figure out how to "do life" with feeding tubes.  It took some time, but we became very adept at trouble shooting problems, and replacing tubes.  Tube feeding became second nature to us.  It got to the point where I could set up his feeding tube in my sleep!  It wasn't long before making his "tube" was no different than making dinner for the rest of us.  It was just what we did.  It became normal for us. 

Christopher's immune system also became very efficient at fighting off infections.  He did have a few minor ones.  Some of them required antibiotics, while other infections he fought off on his own.  NONE of them required hospitalization, and that was the best part of our "new normal!"

Life at home wasn't completely trouble free though.  Tube feeding is a slow process, and Christopher would often spend up to 14 hours a day "hooked up" to his feeding tube.  He also  felt sick much of the time, and his stomach had to be drained several times a day.  His GI doctor said that it was like feeling like you have the stomach flu all the time. Constipation, diarrhea, dislocated tubes, and nausea were also chronic problems.

Despite all of this, Christopher soldiered on.  He didn't let his tubes stop him.  He developed a very high pain tolerance (which can be a mixed blessing...a subject for another blog entry!), and he set about living life to the fullest.  It was as if the tubes just became a minor annoyance.  They didn't define him in the least.  It was just one little interesting fact about him.  As far as he was concerned... he had brown hair, brown eyes, and oh...he had feeding tubes too.  They just became a part of him. 

Christopher continued to go to school, and much to our relief he didn't suffer any long term mental disabilities despite his very poor nutritional status early in life.  He was able to make good grades and even skipped the seventh grade!  It was an amazing feat for someone who started out life being so far behind.  He may have started out slow, but he caught up quick.

Loves to snowboard!

The feeding tubes didn't stop him when it came to physical activities either.  Over the years Christopher has played basketball and soccer.  He participated in P.E. class, played on the "monkey bars" at recess, and swam in the pool on hot summer days.  He has gone snorkeling and taken surfing lessons.  He has enjoyed skateboarding and wake boarding too, but his favorite activity has always been snowboarding.  He loves the mountain, the snow, and the BIG jumps!

Our entire family has become accustomed to life with feeding tubes.  We have always tried to eat dinner as a family.  Think about it.  So much of life revolves around food.  Almost every get together, holiday, and meeting involves some type of food.  Eating is a social, as well as, physical activity, so Christopher has always joined us at the table.  Sometimes he would just lick things for the taste, and as he got older he learned to "chew and spit" food into a paper cup.  Other times he wouldn't feel like tasting anything at all, so he would just sit and join in on the dinner conversation.

Mike and Christopher taking scuba lessons.

We never allowed the feeding tubes to tether us to the house.  As a family we have gone all kinds of places and done all kinds of activities.  We have gone fishing, camping, boating, swimming, and hiking.  We have made trips to Hawaii and Disney Land with his feeding tubes in tow.  It hasn't always been easy, but we have found a way to make it work.  It just takes a little extra planning and WHOLE  LOT of prayer.

He loves camping and hiking.

Through it all, Christopher has shown amazing grace under fire.  The Lord has blessed him with such a sweet and gentle spirit.  Christopher has shown that he has a strong constitution and passion for life.  His attitude is infectious, instructive, and admirable.  To watch Christopher is to watch strength, courage, and persistence in action.  He doesn't give up, and he doesn't make excuses. 

I have also witnessed his willingness to share his story with others.  He proudly displays his tubes and has always been eager to answer questions about them.  When we go swimming, he doesn't wear a t-shirt to hide his tubes.  He just jumps in with both feet like all the other kids.  Stares are expected, and I have watched in amazement how Christopher has learned to disarm fear and curiosity in onlookers by giving simple explanations about "what those things in my stomach are for." 

A blessing in disguise

I once considered "those things in his stomach" to be an incredibly unfair and impossibly heavy burden for him to have to carry.  I couldn't see anything good, anything positive about those feeding tubes, but time has changed my attitude too.  I now understand that tube feeding was a blessing in disguise.  It was the miracle I had been praying for after all because without it I would never have been able to watch my son grow up.  I wouldn't have known how smart he was or how funny he was.  I would have never known how much he loves snowboarding, and how much he loves his friends.  I would have never been able to see him share his story with others, and I would have missed out on seeing the look of admiration on the faces of those who know and love him. 

I thought that was the end of Christopher's miracle story, BUT what I didn't know was that God wasn't finished writing it yet.  His plans are so much bigger and so much better than our own.  Nothing is impossible with God.  He didn't just have plans for Christopher.  He had PLANS for Christopher.  He was about to do a huge, undeniable, mind blowing miracle that would confound the doctors and change our lives in immeasurable ways. 

So...get ready!  Hold onto your hats!  God is still in the miracle business!

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

More tomorrow...