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Speech About Hope

This is a copy of the speech I gave at St. Robert's for "A Night of Hope."  It is long, but Deb asked me to give a speech and make it 15 minutes.  So, I did.  It times out at 14 minutes and 45 seconds. 

      In 1996, I had been working at Children’s Hospital for about a year.  I worked in pathology as a clinical scientist.  I was now going to train on making slides during a bone marrow aspiration. I went with another colleague to surgery and gowned up.  The little girl having the procedure was already under anaesthesia.  We had passed her parents in the hall as they had walked out of the surgery room with tears in their eyes..  She was 6 and was so little on the table.  The oncologist, who would 16 years later, be one of the oncologists on Lauren’s case, was preparing all of the tools and talking to us.  Dr. Gnarra did a really good job of aspriating the bone marrow from the little girl’s hip, but it was rough and painful as they all are.  There is no way to describe a spinal tap and bone marrow….they are rough and painful.  The bone marrow is a bit brutal.  I made the slides by the side of the gurney and prepped them and walked back to the lab.  I remember saying, “You would have to just knock me out.  I would never live through watching my child endure all of that.  I would never make it.” 
     At the time, I didn’t have children yet.  I didn’t understand the power of that kind of love.  I also did not know of the power of HOPE> 

On December 12, 2012, fear knocked at my door. 
      Lauren came home from volleyball practice on Wednesday, December 5th.  She said she didn’t feel well.  I felt her head and realized that she had a fever.  I told her she would need to stay home that next day and I put her to bed.  I was planning a field trip to Lincoln to Morrill Hall on Friday and had a bunch of stuff to get my students through on Thursday, so Phil said he would stay home with her on Thursday.  Lo rested at home and had no other symptoms other than a fever.  This happened again on Friday, Saturday, and Sunday.  The fevers were pretty high, but we piggy-backed motrin and tylenol.  My mom wanted to stay with her on Monday, but this was 4 days with a fever, so I called Dr. Woodford during the day on Monday.  Lo’s fever had seemed to break Sunday night, but on Monday, she had a low-grade fever.  She was really lethargic, but again, she didn’t have a sore throat or any other symptoms.  The only thing that had bugged me about her health that year is she had a few tantrums and she seemed tired.  I also noticed her gums were really swollen after she got braces and had the orthodontist double check them.  He thought I was being a little paranoid.  But, in the back of my head after studying different types of diseases for 17 years, I knew hypertrophy of the gums was a sign of leukemia.  But, what are the chances?
      Dr. Woodford called me back on Monday evening and I told him I was worried she had influenza because of the high fever.  He said to bring her in on Tuesday.  I knew Dr. Woodford really well.  He knew my background and he trusted me that if I felt something was off, he was going to check it out.  But, I still thought she had the flu.
     My mom took Lauren in on Tuesday.  She was in good spirits and was tired, but seemed ok.  Dr. Woodford thought she looked really pale, so he decided to draw her blood.  Thank goodness for this instinct.  It quite possibly saved her life.  When he got her results back, he called Childrens’ Hospital immediately.  Then, he called me at work.  He said it was an emergency and had me pulled out of my class.  I went to the phone and he said to bring Lauren directly to Children’s.  I said, “oh no, does she have pneumonia.  He said…No…you want to know, don’t you?  “OF course, I said.  He read me the results.  I knew immediately that she had leukemia.  She didn’t get diagnosed until the next day after a bone marrow aspirate and a spinal tap.  But, she had three lines of cells down.  Lauren had leukemia.  I screamed all the way to the hospital.  Fear had knocked on my door.
     One of the toughest nights happened early on in Lauren’s care.  Lauren’s leukemic cells had burst in her lungs and she was having a hard time not going into respiratory failure.  I fought the intensivist that night and wouldn’t let him put her on a vent.  I knew that if he vented her, she might not make it since her body was so weak.  But, inside I thought we were losing her.  St Margaret mary’s had a beautiful rosary service led by FR. Weeder that night and although I was struggling, I couldn’t help think those prayers were going to make a difference for her.  But, in the middle of the night she was becoming very weak and she was having a hard time stabilizing.  I prayed the rosary and sat diligently by  her bed.  In the early hours of the morning I lifted my head and looked at her.  She was in and out all night and didn’t seem to be there, but at that moment, she was very lucid.  I thought this might be my chance to tell her how much she meant to me and to our family.  I told her what a blessing she was to me and how when my dad died and Phil was away at war, I would sit in the middle of the night and just hold her.  I said she was a gift from God and was pure joy.  I told her how her daddy loved her so  much that sometimes it made him cry.  I told her that her brother loved her so  much that he told everyone that she was his baby and he was very protective of her.  She nodded her little head and smiled under that oxygen mask.  I told her how she has brought people to prayer and that the entire St Margaret Mary parish had her in their hearts. I told her that Father Weeder loved her and had been there every day to see her.   As I spoke she would nod ever so slightly.  I asked her if she knew what a blessing she was.  She held her finger up and beckoned me towards her.  She could hardly speak because of the oxygen mask.  She sounded like she did when she was three with her little voice and said to me, “YOU, you are my blessing” and she made the sign of the cross on my fore head.  I could barely breath.  I knew that God was present in that time and space with us and he had moved her heart to tell me exactly what I needed to hear.  I knew in that moment that this child was so loved by God.  If I was a blessing to her, I would move mountains to get her through this.
     Counting your blessings always gives you hope.
     One night a couple of months later we were in the PICU.  Lauren was septic, which was bad enough, but
she went into shock.  Her heart was having trouble pumping her blood because of toxins that the
bacteria had released into her bloodstream.  She was critically ill.  It was pretty stressful.  The mood was tense.  Lauren was on a lot of medication and was not very comfortable.  It was the second night of being moved into the PICU.  Earlier that night a guy had been moved into the room next door and was moaning
really loud because of a head trauma.;  It went on for hours.  It scared Lauren at first.  I sat by Lauren’s bed and faded in and out of sleep.  His constant moans
kept me awake and added to the stress.  In the middle of the night Lauren was awake.  I was having trouble with anxiety over Lauren’s condition.  The last time
she was in PICU, we started praying the rosary.  I would pray and Lauren would rest.  She liked the sound of the prayer.  I took the rosary off of her chemo pole and asked her if she wanted me to pray the rosary for her.  She said, “Yes.” 
“But, I want you to pray for him.”  “Who? I asked.  “The boy next door that hurt his head,” she said.  “He needs it.”  I don’t’ know if she how sick she was.  I
knew she was really uncomfortable.  But, even in the middle of that, she wanted me to pray for him.  Giving to others and praying for others is the most powerful way for us to get outside ourselves, our own problems, and feel like we make a difference in this world.  She knew this instinctively. 

When we are there for others it gives us hope.
     What kids naturally do that adults don’t is to let go of sorrow and find some joy.  They want to play.  They find ways to play.  When they do, the memories of pain and sorrow are gone.  They don’t search them out and dwell on them.  This is finding hope and it is what they do naturally.
     After Lauren got out of the PICU, she wanted so much to play.  Anytime she wasn’t throwing up or hurting, she found ways to entertain herself.  She loved painting nails and became quite good at it.  In fact, some of the nurses and many of our new friends at the hospital would stop in and chat and let Lo paint their nails.  We made new friends all over the hospital, which brought joy to our stay.  She would find everyday ways to have fun.  Fun is an easy way to find HOPE.  Lately, I try to let go of some of the painful memories of Lauren’s 6 months in the hospital.  I try to remember the fun.
      One of the best memories is when a big storm hit the last week of January.  It was a snow day!   But, not for Lauren.  She wasn’t feeling that great and was in bed all day.  She was kind of sad that she was couped up and was having trouble finding ways to be happy.  One of my friends, Kim Root, texted announcing that “Yeah, it was a snow day>  I texted back and said I was sad remembering all the fun that we had in the past on previous snow days.  She replied, “Can Lo come to the window later?  Other than a couple of the kids, most of the kids in Lauren’s class had not seen Lauren and Lauren hadn’t seen them.  This was one of my worries.  The isolation was starting to get to her.  The walls were closing in…..she was losing HOPE>  I texted Kim back indicating I would try.  We thought around 4:00 might work.  Around 4:00, I peaked out the window and saw Kiley and a couple of Lauren’s other friends playing in the snow.  Lo’s nurse and I coaxed Lauren to stand stand up on the cot to look out at what she thought were just some random kids playing.  She said, “that looks like Kiley’s frog hat.  Then, a couple more kids ran out from the parking garage.  Lo giggled and was curious as to what these kids were doing.  Then she said, “that girl runs like Caroline!” Lo looked at me and looked puzzled.  I said, “Yep, those are your friends!”  More and more kids ran out of the parking garage.  Lo was trying to figure out who everyone was and was laughing and smiling.  She wrote on the window “HI!” and waved at all of them.  About 30 kids ended up coming out on the snowy lawn to play, make snow angels and wave up at Lauren.  As I was watching her, I realized it was if she wasn’t in the hospital room, but watching all her friends at recess playing.  She was back in the midst of her people.  The sparkle came back to her eyes and she smiled so big.
•Between her beloved friends and her silly nurses and all the people rallying around to support her, Lo found HOPE in the people that loved her, including a timely visit near her birthday from Taylor Swift.  She especially loved  the ones that treated her like any other kid.  Our priest, Father Weeder knew how to do that, sometimes to my dismay.  One day he was bouncing the volleyball back and forth with her even though she was hooked up to a central line right into her aorta.  They were laughing and having a good time.  I was on the cot holding my breath hoping that she didn’t pull her line out.  But, sometimes she had to disappear back into being a kid.
•Dr. Thompson knew that.  Sometimes when Lauren was at her worst, Dr. Thompson would say “Get those little friends up here right away.”  She knew that Lauren needed to be with her people, despite the fact she had no immune system and it was a risk.  Her little friends put on a brave face and stood by her when she was at her worst hooked up to machines and oxygen masks.  They were shaking, but once they locked onto each others eyes, you knew that the strength and love from her friends was filling Lauren up with the kind of hope that she needed.  You could see her eyes sparkle.  The love found in friendship is powerful.  It made Lauren fight like mad to get herself well and get back to her little friends.  The connection we have with people is sometimes just what we need.  I know the oldsters at church always poo poo when we give each other the sign of peace and hug and carry on.  But, it is one of my favorite parts of the mass.  When our family is at its worst, sometimes that kiss of peace is what holds us together that day or the shake of a stranger’s hand and a smile gives me the hope in that moment that I am connected to a bigger cause.
So….don’t lose Hope, because when the sun goes down…the STARS come out.
•Our future is uncertain and I am sure there will be times when fear will knock at the door again.  But, when fear knocks and hope answers, we will find that fear is no longer there when we open that door.