God's Grace

I've been hesitant to blog on anything even remotely related to my health - I live a very rich life in spite - and in some ways because - I was diagnosed early in life with a chronic condition.  People tend to find their blog as an outlet for their feelings and emotions related to their health.  Before the Internet, I believe this was called journaling.  Only now those thoughts are open to the world's view.   The one's that truly get to me are written from a mother's or father's point of view, where their child suffers and their words lift them from what must be the world's sharpest pain.  The pain of seeing your child hurting or suffering and you can't do a thing about it.

Over fifteen years ago I waited in the Minneapolis/St. Paul airport for a connecting flight to San Francisco.  It had been a long layover - close to two hours already - with a long flight still to come.  I'm first to the gate on this Saturday afternoon and my wait begins.  I'm doing the things people used to do at an airport before our smartphones and iPads kept us company.  I'm reading magazines and watching the people. 

My attention was drawn to a large family - a mom, a dad, an older brother, a middle sister and a little boy.   The first to attract my glance was the little boy.  He was obviously sick.  His hair was gone, his frame fragile, his wheelchair, the pic line for a pain pump, his tired expression.  I thought perhaps he was headed with his family to wherever he called home.  Home perhaps from treatment at Mayo.

The next thing that drew my attention were his siblings' return from the magazine shop.  They had purchased a picture of the Mall of America and brought it back to show him.  The look on that boy's face would have been worn by my 90 year old grandfather years before.  The tiredness, the unaffected interest, the knowledge he'd condensed into just a few short years.  I said a prayer.  "Please dear God, please have them find seats together and not next to me if they are headed where I am headed."  Selfish yes, I had this feeling.

The family's tickets were distributed by the gate attendant and her words were, "I'm sorry the flight is full and we've had to split your family. We'll put mom and the son together and dad you will be able to sit with the other two children in back.  I'm sorry but there is no other way we can accommodate all five of you today."   The parents understood and felt the split - mom taking Jacob and dad taking the other two was the best strategy for the flight.   They are taken on board first as it will take time for them to settle in.

The seat rows are called in much the same way they are to this day. "We'll start from the back of the plane - rows 30 and above".  I am close to the front of the coach cabin, perhaps just two rows in, so I wait.  And my row is called and I approach my aisle seat.  I exhale and I politely say hello to the woman - a mother - seated next to me.  I say my next prayer in my head.  "Ok dear God. So here I am.  You are going to have to help me through this."

The first hour was quiet.  Mom had much on her mind and I could tell her heart was heavy, her sadness evident.  The beverage service came through offering a chance to exchange polite conversation.  I asked if they were headed home.  "Yes, we are, we are on our way home from Disney World.  My husband and two older children are in the back of the plane.  This is my son Jacob with me."  I would find out later that this was the second Make A Wish trip the family had received.

I said I was sorry.  "It is so very hard to be sick as a child.  I was sick at one time."  Her eyes drilled into me with this intense curiosity.  She asked, "How did your mother react?  What did she do?"  I said, "She did the best that she possibly could."

She started her story.  Her youngest son was diagnosed with leukemia when he was three - that was their first Make A Wish trip to Disney World.  He went into remission and he was cancer free for two and a half years.  As he turned five his cancer returned.   They had exhausted all of their treatment options and decided as a family to take up Make A Wish's offer for this family trip to Disney World.  It was expected that Jacob would not live to see June.  It was late April now.

After sharing this synopsis, she launched into a thousand questions.  She started by saying, "Most people I meet don't know how to react.  They don't understand. You have this experience and I would like to know what it was like.  How you felt and how your mother reacted.  I don't even know how my other kids will feel years later because I spent so much time with Jacob in his short life.  Will they feel neglected?  Will they understand? Would you tell me your story?"

I replied honestly, "I'm not sure I can draw an analogy between my story and yours.  I have been blessed with years of life and it has been a great, rich and for the most part healthy life."  "Tell me anyway" she replied.  "There is no one I've talked with who has lived through a serious illness in their youth."  And so God's answer to someone's prayer began.

"Well, I can only tell you that they knew something wasn't quite right when I was in fourth grade.  There were tons of very basic tests that I learned later simply told them my body was fighting something.  It was presumed to be rheumatic fever but it wasn't.  Later, with more science and research, I believe they will find that the infection was the basis for the autoimmune disorder I have."  Now there are all kinds of autoimmune disorders.  I've characterised these disorders in my own mind as a "black box" of disease states.  If you can't figure out the source, call it autoimmune - like arthritis or fibromyalgia.

It wasn't until my later teens when everything came to a head.  I lost weight - down to 112 pounds.  I lost blood - two transfusions a week.  And I lost my patience.  The physicians involved tried all manner of treatments.  I was subjected to monthly scopes to find out if the disease - at that time diagnosed as Ulcerative Colitis - was giving up its hold on my colon.  All of my trips were scheduled around bathrooms.  It's an embarrassing disease, in a category no one likes to discuss, and having it in the youth of your life was isolating. 

One physician, known as a regional expert in the field, recommended a full surgical intervention.  I was nineteen and alone on that visit.  I wanted it that way.  There are two things that have stayed with me from that day.  The first, this is the life I have been given, I must be responsible for the decisions I make within it.  The second, tell me I can't do something or it can't be done, and I will do all in my power to prove you wrong. 

I found out years later mom wanted to go on that visit with me, but my internist called her and told her not to go.  "Let her go.  Let her find her way through this."  Watching me drive my Mustang into the farmyard after the visit with the "expert" telling me I had no choice but to operate, my mother said I spent ten minutes talking to myself before getting out of the car.  I walked into the house stating (remember I'm nineteen here).  "The physician said I should take the surgical option.  He doesn't believe I can get into remission without it and it would be the cure."  "What did you tell him?" mom asked.  "I said no - rather emphatically.  I will consider it at forty but never at twenty.  It is up to me to prove him wrong."  Later when I was forty, and the science had evolved, I was advised that the UC was actually Chrohn's and that surgical intervention would not have provided a cure.  Funny how things work out.

And so our plane ride continued.  "What did you think of your mom's decision not to go?" she asked.  I said, "It was the right call."  "She could not live my life for me, no matter how hard she must have wanted to." 

I went on, "Your son knows.  He knows that you would do anything to replace the hurt and suffering he is going through. He is just a kid but he is a wise child because of all he has experienced.  He is stronger than you may imagine a six year old to be. He knows that you have done the absolute best that you can."

And as the plane banked over the San Francisco Bay, the Golden Gate Bridge spectacular in the early evening light, Jacob was awake and looking out the window.  "Look mom, I can see the hospital.  It is right down there."  "Yes" she replied.  "When we go in tomorrow, you will have to tell the doctors you saw where they worked from the air."