Thursday, November 21, 2013


"Sometimes Life is going to hit you in the head with a brick.  Don't lose faith."  Steve Jobs

Often I have been given way too much credit when it comes to taking care of Jack.  One thing is for sure, Jack has always been the one to keep the faith.  Know matter what, Jack has faith that everything is going to be all right.

A little about Jack, as soon as he could walk he ran.  From the start Jack liked going fast.  He would jump on his bike and peel off toward town, which was fine expect he was four!  I told him no biking to town alone so the next day he took the keys and started the car.  He was going to drive to town.

His first day on skis, I went to find Winslow his instructor (a very cute aussie) and get Jack.  At the magic carpet they told me Jack was on the chairlift.  Really, I said this is his FIRST day on skis.  The calmly told me he wanted to go.  Of course he did, he would have gone on the Gondola and to double black if ya let him.  I told them, you have to say "No Jack"

But honestly there was no stopping Jack. If he was not peeling through the terrain park on his snowboard, he was flying through through the skatepark on his skateboard.  He liked speed, and he was fearless.

Once his father thought he would teach him a lesson and went off while snowboarding with Jack, thinking Jack would get scared and follow.. nope. That day I was skiing with a friend and on the board at the chairlift there was a note. Mrs Clark please come to the front desk.  I thought excellent, they found my car keys.  Wrong. When I got to the front desk, the lost and found, my six year old son was sitting on it  His father came in right after me. Deer in the headlights, he claimed they got separated.  I told him, you get separated from your 40 year old friend, you lose your six year old child.  But there was no stopping Jack.

At 6 Jack went to the hospital for what we thought would be two days, stupidly I told Jack he did not have to wash his hair till we got home, he left two months later with dreadlocks.  That hospitalization changed everything.   Jack was diagnosed with Pancreatitis, it was unrelenting.  His doctor was clueless when it came to handling it.  She thought a little rest and an IV.  She could not have been more wrong. Weeks later,  a dozen blown IVs, hours of pain and frustration, a massive weight loss Jack was not closer to getting better.  He was getting worse.  I called my friend from Rye, we lived around the corner and our kids were great friends.  Her brother in law was and is Head of Surgery at Columbia Pres.  He saved Jack's life.  He sent Dr. Stevens from the adult side.

Dr. Stevens did an ERCP.  They put Jack under and took a look.  I sat in that waiting room, confident he would come out and say, I have fixed your son.  Nope.  He came out and said "I have never seen this in a child.  I do not know what to tell you Mrs. Clark."  Tears streamed down my face and I went to Jack. He was crying and in so much pain.  It was devastating.  This disease is devastating.

Later that week, they decided to put a provac port in.  This would feed Jack, administer medication and require a lot of work.  Putting Jack under again was heartbreaking, he was so scared.  I was with him in the OR, I leaned down and quietly told him "Jack this is a magic port, with this port we get to go home Jack.  This is a great day".

He come home two days before christmas. His sisters who adore him were waiting at the door. They prepared a special dance for jack and hugged him till he could not take anymore.  Our friends decorated our house that year. Our house never looked more beautiful.  It was decorated with love and compassion.  We are blessed with wonderful friends. Jack's faith kicked in and he was snowboarding five days after.  Port wrapped, Jack took off.  Jack had enough faith for both of us.  He would say mom, I am good, I am okay.

I have lost count of how many times Jack has been hospitalized since.   After each hospital stay, usually picc line in his arm, as soon as he could, he would head off to the skatepark or terrain park.  His faith was remarkable.  Mine not so much.  I would breakdown, cry, drink wine, cry more, post on facebook, call anyone who would take my call. Which most of my friends did.  My friends were wonderful.  They drove my girls when I could not, they made meals when I could not.  They listened while cried. They helped me, I needed them because I did not have faith.  I was terrified.

This year Jack lost his faith. Jack, Sam and I were up at Stratton last Christmas. He was boarding in 22 inches of snow.  He stayed on his board till the lifts closed.  My legs were burning by 2.  That night his pancreas took over and we went back to westchester and back to the hospital.  This time was different.  That smile was gone.  He just was not coming back.  He was not okay.

I have to stay I am not all surprised.  I often thought, that everything this child has been through, the pain, the hospital stays, no food all of it had to be going somewhere.  I have often said his courage and faith were remarkable and it is.  This time there was no faith left.  I felt him slipping away, months went by.  I had no idea what to do. Finally,  I found help.  I realized it was my turn to be strong, to have faith.

I  have enough faith for both of us now.  I have to say its been months, but that smile is returning to Jack's face.  Jack, his sisters and I are going back to Stratton at Christmas and he can tear through the terrain parks and go to their indoor skate park at night.  We can but this horrible year behind us.  Because Jack, I have enough faith for both of us.  I know how strong and courageous you are because I have been with you every minute.  But know now  you have me and your sisters who love you.  It is our turn to take care of you.  We have faith Jack, everything is going to be all right.


cindy baldwin said...

This is a beautiful post, Elizabeth! Thanks for sharing. I'll be sending prayers that things get easier for all of you. I learned something several years ago that I try to remind myself of when I'm in my lowest CF moments - CF is a very unpredictable and changeable disease in BOTH directions. 6 years ago I got a really bad case of the flu and was in and out of the hospital for a long time. I went from being a stable CFer who was usually in for a "tune-up" every winter to an unstable CFer who was always sick. Every clinic visit ended in a hospital admission. So many times during that period I thought to myself that "this was it" - this was my "new normal," and I needed to accept that I was never going to get better than I was at that point.

But then things changed. Some of it was due to new meds, some of it was due to dumb luck. For whatever reason, my body got stronger. I stopped getting exposed to so many germs. I went for a whole year without being admitted to the hospital. Since then I've had good patches and rough patches, but overall, I've been so much better than I was during those difficult years. I really don't think I realized until this experience just how much CF can change in both directions - not just a steady progression of bad to worse, but sometimes bad to better, too. I've seen the same thing happen with other friends as well. I'll be hoping that Jack sees a similar good spell soon!

Elizabeth Williams Clark said...

Thank you Cindy. I appreciate that post. And I feel that you have a point. I know it will get better. I also feel that at this point is was my turn to really stand up and take responsibility for our faith. Be strong. Not let this take me down. No more tears, no more calling friends in tears. It is time just realize that there are going to be good years and bad. I feel that I have always been capable physically of taking care of Jack. Now I must do so emotionally. I must have enough faith for both of us. Thank you and thank you for including us in your blogspot. I am thrilled.