Sunday, May 31, 2015

I hurt myself today... to see if I still feel...

When Johnny Cash sings those palpable words, so somber and sad, he describes my day on Friday quite perfectly.

 I didn’t know I was doing it.  I didn’t realize my trip into the city would turn into a haunting day of torture.  I thought I was strong enough.  I was even looking forward to it; longing for some time in the neighborhood that we used to call our home away from home.  There is a piece of me that still lives there, and I miss it. 

When Gavin turned six in April, his pediatrician discovered a heart murmur during his annual physical.  She assured me it was likely nothing to worry about and referred me to a local cardiologist.  After knowing what we know, Lou and I decided to take him to a specialist at NYP-Weill Cornell, instead.  My best friend’s niece, Savannah, was feeling tired and sluggish – she had a tumor growing around her heart.  Ty had trouble sleeping, he had a tumor growing at the base of his skull.  Maybe if the doctor’s discovered them sooner, our children would still be alive.  I don’t take any chances.

Walking from the parking lot to the hospital entrance, we passed Memorial Sloan Kettering.  (Just to explain, Ty was treated by the neuro-oncology team at MSK, that was our regular hospital, but his neurosurgeon was across the street at Weill Cornell, as was the Pediatric ICU.  At the time there wasn’t a PICU at MSK so we spent plenty of time across the street when Ty was critical). 

So passing by MSK, I had a strange, almost unstoppable urge to go inside.  I had my eyes peeled for a family on the street so I could say hello and connect with the parents.  It wanted to belong there again.  I hoped to see Ty's oncologist Kevin or our favorite nurse, Mary, just to feel for one second like they were still part of our lives, and for a split-second it almost felt like I DID still belong there.  

Then it hit me that I have no reason to walk through those doors.  That the family on the street wouldn’t want to “connect” with me; that they don’t even want to know I exist!  When Ty was fighting, I kept my distance from the bereaved parents.  I wasn’t strong enough to comfort them or to get close to them.  I needed to focus on treatment and survival and keep far away from the “other” moms.  Now I’m the mom they fear most.  The mom they turn away from.  And I don’t blame them ONE BIT. 

I never expected to suffer such intense flashbacks the second I caught the familiar scent of the bakery in the lobby at Weill Cornell.  I didn’t know that the cardiologist’s office was on the 6th floor in the Greenberg Pavilion; that I would make a left off the elevator instead of the right I was so accustomed to.  I didn’t realize I could still feel so green with envy when watching the families carrying blue or pink balloons up to the maternity floor to welcome a new baby.  I became flooded with memories from when I was the new mom.  Who could have ever imagined how my brand new baby boy would suffer in life. 

I grabbed Gavin’s hand and rushed passed the gift shop in fear that he would want to go inside.  I didn’t even look toward my favorite bakery, nor did I make eye contact with a single person on my way to our appointment.  Once we were inside the cardiologist’s office, I thought I was safe.  I had never been there before.  It was so new and nice, with so many fun activities in the waiting room for Gavin. 

I was safe until the testing began.  My eyes filled with unstoppable tears the minute I saw Gavin stick out his finger for a pulse-ox.  He had never seen one before and he thought it was funny.  He doesn’t know that Ty wore a pulse-ox on his finger or toe more times than I can count.  When the nurse peeled the leads and placed them all over Gavin’s chest, with one on each leg and one on each arm, I was in a complete state of internal panic.  Not because I was worried for Gavin – he was smiling the entire time – but because I was brought back to the PICU.  To countless emergency stays.  To laying in the bed next to Ty, trying to avoid pulling on all of the wires hanging from those leads.  If the nurse saw my tears, she didn’t say anything.  I am grateful for that.  I am grateful that Gavin didn’t notice, either.  He was relishing in the attention and having a bit of fun with the whole thing (leads on his nipples, leads on his nose, etc.). 

Everything checked out perfectly fine for Gavin.  The doctor paid extra attention to the echo-cardiogram and explained everything he was seeing to me.  He assured me that there is absolutely nothing to worry about. He was referred by Ty’s neurosurgeon and he knows what we’ve been through so he was very careful with me.  Very kind. 

But something haunts me from that appointment.  They had very modern machines, and they used the gel leads that are very easy and painless to peel from the skin.  Gavin was peeling them off and placing them all over the place and it didn’t hurt at all.  That’s good, I know.  But watching that brought me right back to the PICU when Ty was freaking out over replacing the leads that were all over his body.  His skin was so sensitive from chemo and they always stuck on so badly, like the worst bandaids imaginable.  Sometimes the remaining glue would be on his skin for days.  My mom, who performed hundreds of EKG’s as a medical assistant, once asked the nurses “Why don’t you use the gel leads, I don’t understand it??  These leads are so old fashion, they are hurting him!?!?”  The nurse always answered that they didn’t have those kinds of leads in the PICU.  

But they have them down the hall, don’t they?  I just learned that.  Newer equipment.  Nice, fancy rooms.  Right down the hall.  When the kids who suffer the most lay in an old, outdated, run-down PICU.
This is just one of 50+ flashbacks that came rushing in, fueling the quiet rage that is still burning inside me.  All weekend long it has been building.  As bad hospital memories consume me, I have to work twice as hard to bury the rage and keep a smile on my face for those around me.  It takes so much energy to keep it all hidden under the surface.  I was caught up in these thoughts when I found myself doing over 80 miles per hour uphill on Route 55.  I calmed myself down with deep breaths, and it felt as though my expanding lungs help to push the fire back down into the pit of my stomach where it hides. 

Of course I'm angry.  Someone ripped the skin off his cheek in the OR when removing tape.  Bruising from taking the dressing off around his port.  One time a nurse failed to notice the tape that was holding his needle in place and pulled with such carelessness that his skin split open under his arm (not even where the tape was). He was not sedated when that happened. Are gel leads too much to ask for?  It has just set me off in a tailspin.  

I was carrying Gavin for a couple of blocks on Friday because he was so hot and tired.  He rested his head on my shoulder and I guess he heard me sobbing.  I didn’t realize I was doing it.  He yelled at me.  “Ty is still with you!” he said. 
Then he asked, “Do you think there is ever tornadoes in Heaven?” 
“Of course not,” is said. 
“Yeah, me neither.  Only the best stuff is in Heaven.  Nothing scary ever.”

I wish I could find comfort in that idea, but today I miss my son and I feel angry.  Tomorrow I will try again.


  1. I'm so sorry for your pain. I followed Ty's battle and after his passing I felt a hole had been cut in my heart. I know this doesn't help but I can't imagine the pain you must endure and my heart hurts for you, Lou and Gavin. I will pray for peace for your heart and that you may feel your boy with you at least once everyday. I saw three ladybugs this weekend and thought of your angel each time. Please know even though I don't know you personally that I love you, Lou, Gavin and Ty very very much and again I'm just so very sorry. Love, Geraldine

  2. I'm so sorry for your pain. I followed Ty's battle and after his passing I felt a hole had been cut in my heart. I know this doesn't help but I can't imagine the pain you must endure and my heart hurts for you, Lou and Gavin. I will pray for peace for your heart and that you may feel your boy with you at least once everyday. I saw three ladybugs this weekend and thought of your angel each time. Please know even though I don't know you personally that I love you, Lou, Gavin and Ty very very much and again I'm just so very sorry. Love, Geraldine

  3. Praying everyday for you my dear. Hugs

  4. Praying everyday for you my dear. Hugs

  5. I don't blame you. No one would. The pain your child endured, and you witnessed must surely be unbearable for you to remember. Not that I believe you ever forget. Your right Cindy more must be done to make every effort possible to alleviate as much discomfort as is humanly possible for these kids. Be mad Cindy, it's expected. You are a mom who felt helpless while her child was in pain. I get it. Sending hugs and prayers for your peace. A mom.

  6. The work that is required to be your own medical advocate for yourself or a loved one is truly scary and unacceptable. Ty had you and he suffered less because of it. much love.

  7. "Only the best stuff is in heaven." Oh the irony I can barely type through my tears.

  8. I'm so sorry for your pain. I feel something similar when I go near the psych hospital where my son has been held three times (he is 22 and has schizophrenia). I had one suggestion - forgive me if it's too forward, but people said it to me, and it's been a Godsend. Have you thought about getting counselling for Gavin now or when he's older? We thought our daughter was handling her big brother's illness better, but a friend said counseling might help her. Oh, my gosh, the floodgates opened! We had no idea how much she suffered, partially because she has seen her PARENTS suffering. She goes once a week. Her therapist said she is a very anxious young lady (she's 17 now). Anyway, just a thought. My mom lost her older sister when Mom was 10 and my aunt was 16 and DIDN'T get help. She says it's affected her whole life. Hugs!

  9. Dear God, if I were one of those people who can make pediatric cancer a priority, who can direct funds towards research, better care, better treatment all it would take to get me do something would be to read this. How can anyone read this and yet do nothing to help out? How can they read this and still claim those 5 year survival rates and the "high curability" of pediatric cancer? Why isn't anyone talking about the actual numbers? Why is nothing ever mentioned about the quality of life of the children put through these treatments?
    I know it makes me angry so I can't even begin to imagine how it makes you feel.Is there a point in saying "sorry"? I feel it won't do much for you. I'll say this: thank you for sharing your son's story with us, for letting us get to know this wonderful kid,Ty a little bit.

  10. Cindy, Your mad. Pissed off.. Momma bear mad. KNOW that Ty Never for a Minute felt certain things that swim in your head. He FELT LOVE!! Constantly from you all.

  11. I can only express to you how my heart breaks for you and your family. Gavin is the angel that was sent to you to give you alittle laughter and remind you how very special you are not to ever put Ty out of your mind, but to remind you that the hard times you face and the truth in your postings are not in vain and there are people out there going through what you have and they may find peace for just a moment knowing that out of this tragedy you share some hope. Prayers for you and your family.

  12. I am so disgusted to read what you wrote about the hospital Cindy, sometimes I wonder what can of place we live in. I have been seeing ladybugs everywhere here in Ireland and think of you and Ty every single time, my heart breaks for you. I am so so happy Gavin is okay, such a wonderful boy and his big brother tooxx Hugsxxxx

  13. that was supposed to say what kind of place:(