April 29, 2006

     Eight years ago today I was miserable.  I was about to give birth to a Butterball turkey who couldn't decide which end was up.  Luke kept doing somersaults, even though the Dr. said that was impossible, he is too big!  He was wrong.  Eight years ago today, I my last ultrasound and Luke was finally head down after being transverse for three months.  I was so relieved!  I was terrified of having a c-section. 

     Eight years ago this week, I was getting Jonathan and Katie ready for the reality life was going to change, a new baby was coming home!  Katie picked out a coming home outfit for Luke, Jonathan gave up diapers because he was a big boy now!  The crib was put together again for a third time, baby clothes washed and we waited.  And waited. And waited. 

Snap, Crackle and Pop

Snap, Crackle, and Pop are the team of therapists who have walked Jonathan, Katie, and me through the last 5 months of grief. 

We first met Snap last year after Luke was diagnosed with ADHD and ODD.  She became my lifeline to accessing services and help for Luke at home and at school.  She worked several kinds of magic to make sure Luke had the therapy he so desperately needed.  She was/is a life saver!  Snap is our Care Manager.

     Pop was Luke's first therapist.  She was incredibly patient as she learned more than she ever wanted to know about Mario Bros. and Webkinz.  Luke was a computer junkie and would have spent hours watching YouTube videos of people playing Super Mario Bros.  Pop was around for about five months, with the understanding we were waiting for a male therapist to free up, then Luke would transfer to him.  I loved Pop because she is a reader, after Luke's therapy, we would talk about books. 

     In May, a male therapist finally had an opening for Luke and we met Crackle. Crackle is a no-nonsense therapist who would go round and round with Luke like no one else!  He is very articulate and could definitely hold his own against the little boy who could talk an Eskimo out of his igloo.

     The day of Luke's accident, I think I send several text messages them all telling them what was going on with my baby.  After sending several messages, I finally focused on Crackle alone since he was Luke's therapist at the time. 

Luke with Austin and the two Mario's

Thinking back and looking at those messages, I can't imagine what I put those people through.  But they handled things with grace and professionalism.  Crackle came to Kosair on Sunday afternoon and spent quite a bit of time with Luke.  He also sat with Jonathan in the waiting room, talking to him about what had happened and offering a friendly ear and shoulder.  He brought Luke a giant Mario doll that Luke never saw.  The doll was in the pictures we took of Luke in the hospital, front and center on Luke's table at his memorial service and sits on the top of the bookcase with other Luke items in my living room.               

Luke's Memorial Service with
Austin the Dog, Mario the Bear
and the Original Mario.

     After we came home, Crackle kept in touch with Jonathan.  He visited a once or twice that week, and said he would be there for Jonathan at Luke's memorial service if he was needed.  He continued to come until school started and Jonathan was able to connect with a few people at school.  Later on, when it became obvious that was not going to be enough for Jonathan or Katie, Snap and Crackle helped us secure services for both kids.  Crackle saved a space in his schedule for Jon and Pop said she would come back as Katie's therapist.

     With these two people, we have talked about "The Hard Stuff", the good things, cried and even screamed and yelled.  But they come back every week anyway!  I owe my sanity to them both, they have gone above and beyond, coming extra days when needed, staying for hours and hours making sure we were OK before leaving.

     Obviously they all have real names, but to protect their identity, {they may not want to claim us ;)} I gave them nicknames.  They used to be the Three Musketeers, but in my warped mind, they all met at the office every day before starting work and talked about their cases over a bowl of cereal. Hence, Snap, Crackle, and Pop were born. 

Luke and the President

Luke with "Aarock O Mama" May 4, 2009

Lukie was three years old when I took this picture.  The kids and I had taken a few days during spring break and traveled to Cincinnati for a mini vacation. 

We stopped at Biggs Grocery store in Harrison OH to grab some snack food. While I was in the check out lane, the kids were visiting the game and candy machines in the front of the store.  Luke came back to me crying, "Aarock O Mama!!"  I had NO idea what he was talking about, but on the way out, he kept pointing to the "Claw Machine" and saying it over and over.  I stopped and asked him if he wanted the Barack Obama doll.  He smiled, clapped and said, "YES!"  I resigned to spend several dollars getting my baby this doll, only because he was so cute about wanting a Barack Obama doll. 

 Thankfully, and amazingly, I won on my first $.50!  Lukie carried that doll around for a good year before I think we left it somewhere...

After Lukie died in August, I sent a short note along with this picture to President Obama.  

This came in Saturday's mail.

Dear Janice:

     Michelle and I were deeply saddened to learn of the loss of your son, Luke.  Words fail when a child is taken from us too soon, but I pray you find comfort and strength in the love and support of family and friends.

     My thoughts and prayers are with you during this difficult time.


         Sincerely,

                                                                         Barack Obama

What do you say?

What do you say to a parent who has lost a child? You say, “Hi.” You say you say, “I have been thinking about you.”  “I have been thinking about your child.” You ask about other family members. You listen when I talk about my child. You cry with me, and you aren't afraid of my tears. Sometimes crying with someone else is just the release I need. You laugh when I tell stories of my baby.  My son was a very smart and funny little boy and not a day goes by something does not remind me of a Luke story.  You say his name.

Papaw

     On the way to Indiana the night of Luke's accident, I called Granny and Papaw tell them what happened. Granny answered the phone and sounded tired and drained. Before I told her about Luke, she told me she had just walked in the door from admitting Papaw to the hospital. Papaw had several medical issues, and hospital visits were becoming more and more frequently. She said he was in the ICU, but would probably be home by Monday. She couldn't come because of Papaw, but would be praying. My heart sunk when I heard this, but my attention was quickly brought back to Luke and the drive across Indiana.

     Tom kept in contact with family back in Connersville, keeping them updated on Luke and updating us on Papaw. I really thought he would pull through, just like all the rest of the times. 

      On Monday, when we realized Luke was not going to make it through the day, the call went to Connersville to come now. Granny and Uncle Todd made the long sad trip to the hospital to see Luke. Lukie took his last breath about three hours before they arrived, but they were able to see him and hug and kiss him in the hospital. I explained we would be cremating Luke, so they needed to say goodbye now. The emotions in the room during this time were raw and almost unbearable. My heart broke all over again watching Todd and Granny love on this little boy they loved so much.

     The update on Papaw was better, he was eating and talking and making the enjoying the visits of family and friends. Todd and Granny spent a few hours at the hospital, visiting Luke and loving on Jonathan and Katie.
     
     After we left the hospital, we went to the funeral home and decided on a Friday memorial service. We had to wait until the medical examiner was finished doing his work, and since it was so close to the weekend, I decided a Friday service would be best. Tom went back to Connersville to be with his dad and I brought Jonathan and Katie home. Without Luke.

     Tom kept me updated about Papaw. He was having his ups and downs, and later the week, he started steadily going downhill. It was just a matter of time before he joined Luke. Thursday night, I was driving, my mom was with the kids and I needed some time to think. I called Tom to check on Bob. They were counting the hours before it was over. I immediately saw Papaw, a young, healthy man running toward Luke. Luke had his arms out toward Papaw and was smiling. Papaw swept Luke up in his arms, hugging and kissing him and asking what he was doing there. They were both in Heaven in the Glory of God. Papaw died about three in the morning on Friday, the day of Luke's memorial. While I knew everyone would miss Papaw terribly, it was a comfort to know he was in Heaven with my baby boy, and Luke now had both grandpa's to watch over him and take him fishing
Papaw was a great man. He never met a stranger and had a heart of gold. His love for Jesus was evident in his life. He not only talked the talk, he walked the walk. If it needed to be done, Papaw would take care of it. If you needed something and he had it, it was yours. His love for his family was tremendous. He was the kind of Papaw kid's dream of having. The world lost a great man the day Papaw met Luke in heaven.

 

August 5, 2013

I had not slept since I woke up for work Saturday morning.  I wasn't tired until Scott and Kathy came Sunday night.  They finally got to the hospital about 8 PM after getting lost.  They came from Vincennes to bring Lukie a prayer blanket.  Scott is the Pastor who spoke at the memorial service.  

Anyway…… Tom was still at the hospital and getting on my last nerve.  He was asserting his right to be in the room and stay with Luke overnight.  I was quietly reminding him Luke was at the hospital because of him.  Scott is a wonderful man and very discerning, or I was obvious….. But he took Tom for a long walk while Kathy and I prayed and sang over Luke and talked.  Finally, Scott and Tom came back and he told Kathy Tom was going to walk out with them and to call them if I needed them.  Tom would be back the next day.  I finally laid down to sleep on the cot in the room about 11 PM and went right to sleep.  

I woke up about 4 am and the nurses had moved large tanks of nitrogen in the room because Luke’s O2 stats were dropping very low again.  I had asked them Sunday not to do CPR or shock him again.  Do everything medicine wise they could to keep him going, but do not abuse his little body any more.  It was obvious Luke’s time on earth was coming to an end and I hadn't showered since Friday night and I stunk.  I asked Dr. Henderson several times if I had enough time to take a shower.  I had to take a shower.  She could only say she didn't know.  Finally, I gathered my things and headed to the waiting room and the shower.  I woke my mom up and told her to go sit with Luke, the time was getting close and I was going to take a shower.  I had to wait for a man to get finished, then I took the fasted shower in my life.  I managed to wash myself and my hair and get dressed through the tears.  I went back to the room with dripping hair and my bag. 

Mom said she called John and Mary and Tom.  Grandma and Sherry were still in the waiting room. I am not sure who called anyone else.  By 8 am, everyone who had been there Sunday was back.  I told them no bells or alarms.  I didn't want to hear them.  They were turned off.  I was going to hold my baby boy…… he came into the world from me, he would leave in my arms.  I was told several times he might not survive moving him from the bed, but I had to hold my baby boy again.  They brought in a love seat and I got settled.  Dr. Henderson tenderly scooped him off his bed and laid him in my arms like a newborn baby.  The first think I noticed was how heavy he was and how long.  Whenever he would sit on my lap before, he would curl up in a ball and sit half on the arm of the chair and half on my lap. 

 His legs didn't bend like they did before and his head flopped like a newborn baby.  The tubes with the meds were removed and we waited.  He started agonal breathing even though he was still on the respirator.  I asked them to unplug the breathing tube.  Luke breathed on his own for about 10 more minutes before taking one last deep breath.  During this time, the hospital was being renovated and there were noises that sounded like a jack hammer.  For some reason or another, my mom bent over as the jack hammer went off and it sounded like a giant fart rippled through the room.  Everyone started laughing and it felt so appropriate.  I can still hear Luke saying, “Grandma!!” in his baby voice.  He would have cracked up laughing.  It happened a few times during all of this.  Katie kept watching the heart monitor and Jonathan watched Lukie.  He took his last breath at 8:38 and was pronounced dead at 8:45.  I held Luke and Jonathan, telling Jon he would ALWAYS be a big brother that would never change.  The nurse we had that day was Lexi.  She was amazing.  She was kind, caring and so irreverent and hilarious.  She kept me from falling apart.

We sat in that room until 3:00.  People came in and make hand prints, we made casts of Luke’s hand with Jon and with me and one of just Luke.  We took a few pictures.  Lexi let Tom and me help with Luke’s last bath, which was really extra big diaper wipes and a shower cap with dry shampoo in it.  We weren't allowed to wash him with soap and water, or remove any tubing because of the investigation and autopsy.  A deputy coroner came in and explained things to us, promising that the medical examiner would put things back where they belonged. I told him to lie to me if need be….. So I am going with the fact they did.  That was one day when being able to read people so well really sucked. 

That wasn't nearly as hard to write as writing about Saturday night, Sunday morning.  It was good to think about things, I've had second thoughts about taking him off the respirator and unplugging the meds every day, but he was dying while I was sleeping.  They were doing everything they could short of CPR to prolong his life, but his body was shutting down.  His brain was swelling and dying.   He wasn't going to make it.  I might have sped the process up a few hours, but my baby was going to leave this earth in MY arms, not lying in a hospital bed.                                                          

 

A year ago today he fell out of the van and got his concussion. 

 After he started feeling better, he learned he could set the alarms off by laying on his stomach.  They released us shortly after that.

A year ago during Thunder Over Louisville, he and Jon had front row seats in the living room for the fireworks.  He was so proud to tell me they had the best seats, front row!

August 3, 2013

I sent them that weekend.  I had to work, Tom and I fought whenever he was here and it was the watermelon festival that weekend.  Lots of free melon, bouncy houses and things to look at.  Tom said he had money for the festival, money to do fun things with the kids.  He didn’t.  He balked about the price of the pool 20 minutes north.  It would have cost maybe $10 to take them to swim.  Jon didn’t want to go.  He cried when they left.  He kept coming back to me hugging me.  I kept hugging him and Luke before they left.  He called me Saturday morning, he didn’t feel good, and he wanted to come home.  I had to work 9-6 on Saturday and open to close on Sunday.  With Tom, they would be out of Katie’s hair, I wouldn’t get phone calls every 10 minutes from someone crying and my house would be relatively clean. (or so I thought)  I made them stay.  

     They called me 30 minutes before Luke drown to say Hi.  They never called me, I always called them.  I am forever grateful for that phone call.  I told them I loved them and to make sure they took a shower before they went to bed.  I would see them the next evening. 

      I went to the bathroom and put my PJ’s on and got in bed.  It was 7:58.  The phone rang and I didn’t recognize the #, but it was a Vincennes area code so I answered.  Jonathan was so calm, Luke had an accident.  He couldn’t tell me what, but I heard the sirens getting closer. I told him I was coming, Baby, I’m coming….  I yelled for Katie, get your shoes, we are going to Indiana, Luke is hurt.  I called Jim, I am sorry, there’s been an accident, I have to go to Indiana, I won’t be at work tomorrow.  I grabbed my pants, and shoes.  My phone and out the door.  I thought about a pony tail holder, but decided against it. Called Kori in Vincennes and left a message.  Luke has been hurt and is at Good Sam, please go to my baby Kori. Katie grabbed my keys and locked the door and met me at the van.  I called my mom, but she didn’t answer. I pulled in her driveway as VM picked up.  There’s been an accident, we’re going to Indiana, will you go?  She grabbed her purse and got in.  Janice, let me drive.  I got it, my blinkers are on. The phone rings, it’s Tom.  Luke drowned, but I got him out and he’s really cold.  It’s good he’s really cold, it helps save them.  Is he breathing?  Yes, he’s breathing.  Janice, let me drive.  I got it.  Phone rings, missed the Watterson.  They are doing CPR.  YOU SAID HE WAS BREATHING.  No they are breathing for him.   They are shocking him.  Puts nurse on the phone.  It looks bad.  Don’t know how long he was under, no pulse or respirations.  Please save my baby, don’t let him die.  Tom gets back on phone.  Where is Jonathan?  He’s in the room.  GET HIM OUT OF THERE.  Finally get on 64.  Pull over and let mom drive near Shively.  Trying not to scare Katie.  Luke is going to be ok.  Let’s pray for Luke.  Sonny calls.  It’s bad Janice, I’m not going to lie to you.  Please Sonny, save my baby boy.  Sister, they are doing everything they can, but we don’t know how long he was under.  SAVE MY BABY BOY.  I gotta go, I will call you back and let you know something.  Janice, Sonny is going to call the ISP and get a police escort.  What is your license plate?  911 what is your emergency?  I am driving from Louisville to Vincennes, my baby drowned, we are supposed to get a police escort.  I’m sorry ma’am, we don’t do that anymore.  Ok, I am driving a Honda Odyssey, don’t pull me over because I won’t stop.  My baby needs me. Sonny called, Janice, they have a heartbeat, but he’s not breathing on his own.  They are going to evac him somewhere else. I will let you know where. Tom called, Rose and Debbie from church are here.  Scott is here and will drive Jonathan and me where ever Luke goes.  Pull over, have to pee, my eyes are swishing.  Katie has to pee.  Side of the road…. Fun fun.  Sonny, Janice they are going to St Mary’s in Evansville.  Kori will meet you there.  You will beat the helicopter.   Get to St Mary’s.  Kori and kids are there.  Wow, they have grown.  Bryton is driving, Taylor is beautiful.  Brianna is so tall.  Helicopter lands, nurse says that isn’t Luke, but it is him.  They have to get him upstairs.  She comes back and takes us upstairs.  Can’t see him yet.  DNR comes looking for Tom.  Talks to Dr’s.  Will come back to talk to Tom.  John and Mary come.  Why are they here?  Don’t ask, just ignore Mary.  Tom comes, tries to explain himself.  I want to kill him, I want to beat his head into the ground.  I don’t.  I sit there and murder him with my eyes.  Scott stands behind him with Jonathan.  John takes Jonathan to get a drink.  I tell Tom Luke is dying and it is his fault.  He gets mad and clenches his fists and makes excuses.  Janice….. not now mom says… I can’t get thrown out of the hospital, my baby needs me. Dr comes in, Luke’s condition is grave. If he lives, there will be severe brain damage.  Wheel chairs, paralyzed.  Infant like, maybe never breath on his own again.

Luke at Kosair  PICU August 4, 2013 

An hour later, they let me in to see my baby boy.  He looks so peaceful, just sleeping.  Naked, wires and tubes sticking out everywhere.  Lukie baby, I’m here, Mama’s here.  Open your eyes little man, squeeze my hand.  He does, but he is posturing.  It isn't purposeful.  His brain is dying.  Too many wires and tubes. Sit next to him, hold his hand and don’t move.  Tight quarters, kids come in and see him.  Talk to him. Tell him you love him.  Hospital gives us a room for the kids to sleep in.  go to the bathroom. Come back, drs are working. Sit in hallway. Kori, is he going to make it. It’s bad Janice.  He squeezed my hand. I know.  Do you feel him?  Yes I say, but I know he is gone.  He’s not coming back to me.  Go the bathroom again.  Room filled with drs and nurses, he is coding and they are doing everything.  No bells, whistles or alarms, silent code. Dr says he’s going to Kosair, Ecmo maybe will help.  Can’t fly until 6 am. That is 2 hours.  20 minutes later, he’s going by different team in 30 minutes.  Kiss Luke, tell him you love him, he will probably not live to get to Louisville.  Kids go with John and Mary.  I watch helicopter take off with my baby in it.  Pray the entire way back to Louisville.  Call Sherry, please meet my baby at the hospital, don’t let him be there alone.