Perspective

DAY 15:  PERSPECTIVE   

Today is April 15, the one year anniversary of the tragic events of the Boston Marathon Bombing last year.  Even here in Chicago, the T.V. is covered with tributes to the survivors, the rescuers, and those that lost their lives.  So much tragedy and sadness.  It’s impossible, I think, for most of us to understand that kind of loss.  We can imagine, but likely our imagination pales in comparison to what must be an unbearable pain.  We don’t need events like the Marathon Bombing in order to appreciate our gift of life, but it certainly provides perspective for all us.   There is no jump here, comparing any of the pain or losses in the Boston Marathon Bombing to any part of Autism.  Not at all.  What I am saying is that in life, perspective is everything.  And we can choose to let perspective lift us up and make us better people, or bring us down.  I try to always choose the former. 

I remember the day Coleman was diagnosed with Leukemia.  He was 18 months old and had developed a tiny pin-point rash on his neck.  I kept looking at, trying to wipe it off.  It almost looked like red pen dots.  But it was under his skin and wouldn’t wipe off.  Three days later, there were more and something was nagging at me, something that made me think this tiny rash wasn’t ok, so I called the pediatrician for a sick visit.   She saw the rash and her normally playful demeanor turned serious.  She said it was worrisome, and that we should head directly into Children’s.  I asked what it was, but she said she wasn’t sure, just that it should be checked.  I think she knew then but she didn’t want to say.  When we arrived at Children’s, the E.R. doctors looked at Coleman’s rash and then asked if my husband was with me.  Strange, I thought.  When we went in for the labs, the nurse drew the blood, but said she was going to keep the I.V. in, just in case they needed to give him medicine.  Something was wrong, I started to think.  I called Billy and he immediately came in.  The Doctors must have been waiting for him to arrive, because as soon as he walked in, they came in right behind him and closed the door.  “There is no easy way to say this.  Your son has Leukemia.”  I looked at Billy as if this was some kind of ridiculous joke.  And then I looked at Coleman who was sleeping peacefully.  No, this was a mistake, I was certain.  “You think he has Leukemia” I pleaded, “but it could be something else right?”  They looked so sad, so very sad for Doctors that must have given this news more often than they ever planned to.  He shook his head no.  “We are sure.”   I cried, and Billy stood stunned, before he too fell into tears.  My mother, who had come in with me, had her hand over her mouth, silently crying.  The doctors stood there quietly, giving us time to digest the news.  That very moment changed our lives forever.   Coleman was formally diagnosed the next morning after the blood results with High risk T-cell Acute Lymphoblastic Leukemia.  He had a port-o-cath surgically placed the in his chest the next morning and began chemotherapy treatment within 24 hours.  At the first parent meeting we went to that week, I remember we went around the circle telling the group the diagnosis for each of our children.  I said “A.L.L.” and I remember other parents said “lucky”…Lucky because Leukemia was treatable, with over a 90% survival rate.  Many of the parents in that room had children with incurable cancers, cancers with very low survival rates, or cancers/tumors that could not be removed.  I suddenly felt very lucky.

Around 10 days into treatment, Coleman developed a fever and despite several antibiotics, it would not let up.  The doctors decided they needed an MRI to find the cause of the infection.  His body was tiny and weak, and I held him in my arms of the MRI waiting room.   A nurse was with me –one of the countless amazing nurses on what was then 7West – and we made small talk to try to calm my fears.   Most children that die with Leukemia die from an infection associated with the treatment, and Coleman clearly had some kind of infection.  As we sat there quietly talking I heard Coleman take a tiny gasp, and I looked down and stared at him.  He was not breathing.  I started to yell, but the nurse saw it too and grabbed him from me, lay him on a table there in the waiting room, quickly pushed the Blue button on the wall, put an oxygen mask on his tiny face, and began to press his chest.  I heard the familiar intercom statement: “CODE BLUE, CODE BLUE” – it was for us, and within moments, the room was full with over 20 doctors, all working on Coleman.  I stood watching, praying.  “Don’t take him now, God.  Please not now, not yet.”  And miraculously, they got him breathing again.   And I felt very lucky.  Again. 

Around a week or so later, we were back on 7West, finally out of the ICU.  We were sharing a room with a small child who was dying.  They were trying to treat him, but his lungs kept filling.  They had him attached to a machine that was trying to keep up with it, trying to take the fluid off him.  His mom had made the decision to take him home.  She was so strong, I remember, choosing the unthinkable, because she knew the end was there and wanted their family to have their final time with him.  The nurses told me he had died the next morning, and I picked up Coleman and hugged him, crying into his shoulder.  And I felt very lucky.  Again. 

We eventually came home and completed Coleman’s outpatient treatment at the Jimmy Fund Clinic.  We met so many wonderful people there – including a woman with a spunky little girl named Mary. Mary had the same clinic day as Coleman so we bumped into each other quite often.   She was a sweet, sweet girl.  When I looked at her, I thought of my girls, and felt so much empathy for this family fighting for her survival.  Her Mom and Dad were good people, and the struggle was visible on their face.  Despite their efforts, she lost her fight.  I couldn’t imagine the pain, the loss, as I stood at home with all three of my children.  I felt very lucky.  Again. 

Then, not so long later, Coleman was diagnosed with Autism.  It was crushing, of course, and we wondered what kind of life lay ahead of him.  We still do.  But already, he has come so far.  And awareness and tolerance and acceptance are ever increasing.  We know there is more greatness to come for Coleman. He may have Autism, but he has a lot more than that.  He has his life.  And we have him.  And for that, we feel very lucky.  Every day.