Ty was here

I have written those words in the sand each day.  It makes me feel so good to remind everyone of his presence.  So much so that I wish I had the foresight to write those words all over the place when Ty was still with us.  Of course, vandalism is not cool… but it would be so nice to know that somewhere hidden in each hospital room it reads “Ty was here.”  Somewhere in every special place we ever visited, like the hotel room in Mexico, we etched it into the tiles or discretely scratched it under the headboard.  A reminder of a little boy who was gone too soon, but left an impact. 

There was a perfect quote posted to my Facebook yesterday that read: “There are souls in this world who have the gift of finding joy everywhere, and leaving it behind them when they go." - Frederick William Faber

Henley Hazel Romine is a beautiful little girl who is lovingly called “Henny Bee” by her family.  When I saw her for the first time on the ninth floor of Sloan Kettering I stopped in my tracks and stared at her tremendous eyes and her perfectly round shiny head adorned with a headband.  She was breathtaking.  She was just a baby, snuggled in her mother’s arms and sucking on a pacifier.   We were still rather early on in our treatment with Ty and I was so hurt by how very young she was.  That was almost three years ago and she has held a special place in our hearts ever since.  Her family lives in the Midwest, but we have been reading about her progress ever since she transferred care from Sloan Kettering after being told, “There’s nothing more we can do.” 

Her parents were amazing and refused to give up.  They sought alternative treatment options and found the incredible Dr. Schoeller in Michigan, who I have read about before.   She was accepted into a clinical trial for her Neuroblastoma with great results.  I often hoped that if Ty couldn’t get the miracle, maybe Henley will!!  I love that little girl and her family because we are so very much the same. 

Yesterday, her parents received the same news that we did on September 17, 2012.  Their post to CaringBridge was simple and straightforward: “It looks like God’s Plan is for Henley to watch over us.  Scans look bad and there’s nothing we can do but keep her out of pain.”

I can’t stop the tears from clouding my eyes every few minutes.  For months I read all of her updates with undying hope.  Her journey has been so similar to Ty’s, so many unfair ups and downs, and lately she has been doing so well and finally enjoying her childhood.  She went to nursery school and played on the playground with other children for the first time.   Her older brother had a happy little sister to play around the house with.  Her parents often wrote about how they finally felt like they were becoming a normal family again.  God, do I know exactly how that feels!  How, after experiencing the horror of childhood cancer for years, every little giggle tickles your heart and every ounce of normalcy feels like storm clouds are being cleared.  How one normal afternoon with nothing to do is as magical as stepping out into a sun shower with the warmth of the sun kissing your cheeks, the smell of wet grass and a hot street that got some much needed relief from the rain, and an awe-inspiring rainbow overhead. 

I also know exactly how her parents felt when that almost normal world was shattered the very second their baby girl said “my leg hurts.”  I read about the trip to the hospital to address the pain and I knew what they already knew but couldn’t imagine to say out loud.  In just a couple of days her pain became excruciating, and now her family is faced with the reality of progressive disease and no more treatment options.  I wish more than anything that they never had to share these feelings with me.  I had and will continue to have so much hope for Henley.  I will never stop praying for her, just as you all never stopped praying for Ty.

I always used to ask God, "How can I pray harder?  What can I say to You, or do, that will convince You that Ty needs a miracle?"  I find myself asking the same thing when I pray for Henley, and it makes me feel so helpless because I never prayed “harder” for anything in my entire life and I couldn’t change the outcome for Ty.  

The other day was eight months without Ty.  We sat down on the beach and within seconds a ladybug came soaring over and landed on Lou's leg.  "Lou, it's a ladybug!"  He was so happy.  Ty never sends Lou ladybugs, so it was extra special.

Later that day Lou and I took a walk over to the church to talk to him and tell him how much we miss him.  Inside was a woman kneeling down at the altar in prayer.  She had her head covered, rosary beads in each hand, and she was praying with some sort of methodic ritual.  I thought to myself – is that praying harder?  Should I quietly ask her to pray for Henley because she seems so much closer to God and clearly I wasn’t very good at it?  I wondered if I came to the church every day when Ty was sick and prayed with such intensity, then would he have been saved?  I quickly came to the conclusion that I believe God Himself would agree with.  Ty needed me to spend every second caring for him, and God wouldn’t have wanted me to leave Ty’s side to spend hours on end in church.  I was exactly where I was supposed to be, and my prayers were just as strong and just as meaningful from a hospital bedside versus a church pew. 

After reading the update on Henley, I decided yesterday that I was going to get drunk.  Please don’t worry, I don’t have a drinking problem… but I do have a grief problem, an anxiety problem, and a generally pissed off problem.  It served me well.  I laughed with friends, I indulged, and I forgot about the sad reality for a while.  I think I’ll do the same thing tonight. Tomorrow we head back to Pawling, and I will have plenty of time to cleanse and get back into shape. 

Our time in Long Beach has been so wonderful.  Gavin, had a blast.