Thursday, May 2, 2013


It's hard to describe what it feels like to be me right now.  Although that's just who I am.  Me.  I'm writing the same... I'm expressing myself the same... the only thing that's different is that my heart feels like it was ripped out.

On April 10th, standing helpless in the emergency room watching a large crowd of people - one on top of Gavin - trying to keep him alive... it was an out of body experience.  I am used to being in control of Gavin and his care.  I wanted to keep shouting things like, "Watch his left eye!"  "Can someone sing Twinkle Twinkle Little Star?!?"  "He's going to get a rash from your detergent ridden hospital sheet!"  Totally ridiculous thoughts at the moment - but I was desperate.  I felt so helpless.  So useless.  So vulnerable.  Just an hour before we were giggling at home.  What in the HELL was happening?

They told me I couldn't go on the helicopter with him - the fifteen minute flight from Pennsylvania to Delaware.  I was sure it was because they thought he would die mid-flight and they didn't want a grief stricken Mother freaking out and distracting the pilot taking the entire chopper down.  So sure that I pulled one of the flight team aside in the hallway outside the trauma room Gavin was in.  "Please,"  I begged him... holding his hands in mine, "Please promise me you won't let him die afraid.  Please sing to him and tell him his Mommy and Daddy love him.  Please."  He stared me straight in the eye and said, "I am NOT letting him die."  I was trusting these strangers with my little boy - possibly with his last moments on this earth.  I was devastated.  And as I left Gavin's room - Ed's hand in mine - I've never felt so vulnerable.

That evening, settled into his room at DuPont - his second home - Ed and I stood in the corner two more times.  Two more times that night Gavin coded and had to be brought back to life.  A nurse we will never forget named Ben stood with us giving us a play by play.  He told us what every beep and every number meant.  When doctors would call out instructions or orders, he would translate.  He was our bridge between that lonely corner of the room and Gavin's side.  I hate not being there... being involved.  Relying on others to explain what's happening as you are watching your child possibly die for the first... second... or third time... is the worst feeling.

The next day, I knew.  I didn't want to know.  I felt like I was giving up on Gavin - the boy I fought for every second of every day of his life - by even thinking it.  But as I looked at his eyes, pupils different sizes... sometimes traveling different directions... I knew that my gorgeous miracle child was going to die.  I kept that to myself.  But as heels clicked in and out of our room all day and all night... as monitors beeped and alarmed... as I laid next to his warm body and watched his chest mechanically rise and fall... I never felt so vulnerable.  This child I birthed from my body - who's life is so mixed up in mine - was gone.  Alone in my thoughts, I felt a bit of peace picturing his spirit filling up the room.  I knew he was allowing us time - hanging on for us so we wouldn't fall too hard and fast.  Gavin has always been so, so generous.

Smiling.  Crying.  Eating.  Sleeping.  Laughing.  Showering. Caring about doing anything while your child lay dying in a hospital bed feels wrong and right and confusing and bad and good.  If I had a moment of laughter, I felt bad.  What if someone saw me laughing... might they think I don't care?  If I slept, how dare I?  If I smiled too much would I not appear "enough" like a grieving mother?  It is the strangest experience to be so, deeply involved 24/7 and be "on" for nurses and doctors and visitors and clergy and... each other.  If anyone came to visit, we comforted them.  For me, it was easiest to go into my "zone" of wanting to know everything about what was going on medically - just as I have so many times before with Gavin.  The entire hospital experience - being in a fishbowl - is a very vulnerable feeling.

My heart has never been so bare as it was preparing to leave his body.  I've never left Gavin.  I once lived at DuPont for months, refusing to leave his bedside... sleeping on a "civil war-era metal cot" every night.  When he would have any procedures done - especially if they were painful - I insisted that I always be there.  I wanted him to always see my eyes - know that I was there.  I would put my face right above his and sing to him - trying to calm him and comfort his fears.  I knew the day was coming that I would have to leave his body at that hospital and my heart was just laid bare.  No one could ever know how that felt for me... after all that Gavin and I endured together as a team.  No one.

Sara and I went to the Mall one evening - my LEAST favorite place to be - to shop for my funeral clothes.  As the salesperson brought us to a fitting room I wanted to blurt out, "My son is dead."  When I paid for my blue dress I wanted to tell her, "It had to be blue - you know, for my son's funeral.  My son died.  He was 5 1/2."  I felt phony walking around a mall - caring about clothing - so, incredibly vulnerable as people passed us in blurs of color living their lives unaware.  I didn't want ANYONE to be unaware of Gavin.  I still don't.

Standing at the front of church, greeting friend after family after stranger after friend - 800+ in total - I felt naked.  And like a fraud.  "You're so strong!" I heard over and over.  I wanted to say, you must not have heard about my 'heated conversation' with God last night.  "You're handling this with such unbelievable grace!" was another common theme.  Rest assured, most true 'graceful' people don't shout obscenities as they throw cardboard boxes against their garage walls.  At least I'm pretty sure.  To appear to be one thing - and feel like a completely different thing - is a very vulnerable feeling.

Since April 10th, the outpouring of emails and comments and Facebook posts has been overwhelming. I feel confused and honored and grateful and nervous about all of it.  I've always written just for me - it's my outlet, my therapy, my everything.  People have been accidentally helped along the way and I'm glad for that.  I've never set out to be anyone different or set myself up as anything other than a very flawed Mom who writes about her life with her kids.  As a people pleaser, I feel compelled to read every note and try to respond to everyone.  Part of me feels happy to do that - I love to help.  I really do.  But part of me also needs you to picture this:  Picture a woman lying on the floor with her heart hanging out - blood everywhere.  It would probably not be the best time to ask her too many questions or ask her for advice or wait for an answer or expect to get logical direction.  Actually, it's probably wise to never ask me for directions... not my strong area.  Or recipes.  With so many people reaching out to me - I feel panicky.  I am sure that I will miss someone, hurt someone's feelings, overlook something, forget to thank someone, forget that someone did something at all... it's overwhelming.

To have so many people's eyes on me now is a ridiculously vulnerable feeling.  Strangely, seeing my life written out on Momastery yesterday did NOT make me feel vulnerable.  It actually made me feel free.  Those closest to me knew all of this - they lived through a lot of it.  To get over a hundred emails with beautiful and personal and heart wrenching and "me too" stories solidified my feeling that it was the right thing to do.  However, to get emails and comments from people that seemed to put me up on a box (not even a pedestal) saying I was 'inspiring' or they had such 'respect' for my way of looking at things... I wasn't sure about that.  I had to call my Mom and say, "Do these people realize that this is the same person that was involuntarily committed 26 years ago?"  It's hard to reconcile.

Now that life is moving on so rudely... and spring is springing outside our windows... it is getting tougher.  I have to muster up the courage to go to Gavin's school... to see his cubby with all of his things... to hug and thank everyone who has meant so much to him and to us.  I have to take on the challenge of gardening - finding the perfect spot for Gavin's funeral hydrangea plants, a butterfly bush and a gorgeous stone bench which was gifted to us by Ed's work colleagues.  It is inscribed with "Those we have held in our arms for a little while we hold in our hearts forever."  This will be a daunting and emotional task. I need to tackle the piles of cards and gifts and pictures and memories that are forming a mountain on my dining room table and try to make sense of it all.

How do you make sense of anything that doesn't make sense to you?

There are big changes around the corner, too.  Tomorrow is our beloved Miss Sara's last day working here which will be a tough transition for all of us.  She's not leaving us forever - she is deeply ingrained in the heartbeat of this family.  As a matter of fact, we have decided to get the hell out of dodge as part of our thanks to her.  At the end of May, Ed and I are whisking Brian and Miss Sara away for a trip to Disney World for four days.  Ed and I were counting the days until we would take Gavin and Brian for their first Disney Trip.  And we knew that Gavin would enjoy it more than all of us - the rides, the music, the energy.  We will be bringing him with us, in spirit, but it does break our heart, too.  We're using points, miles, and the help of my friend Danielle who is a "Magical Memory Planner" for Disney.  She's planning out our whole trip.  We pretty much have to just show up.  (This is, remarkably, a free service that Disney offers.  Check out their Facebook page and ask for Danielle Wann if you're planning a Disney trip!  She is a total 'insider'!)  

I will also need to figure out how to fill my time.  Time that was often wrapped up in research, planning, fighting, phone calls, therapy... and love.  It was all done with so much love for this child that was my life.  He really was my life.  The thought of just going on without him as part of my every day is such a terrible feeling.

If I were to write all of this down - a list of feelings - perhaps the one at the top of the list would be "Why."  The title of the list would be "Things that make me feel vulnerable right now."  I just need to know why.  On Gavin's death certificate it reads:

Enter the chain of events - diseases, injuries, or complications - that directly caused the death:

Cardiopulmonary arrest
Cardiac Arrhythmia 
Febrile Seizure
Undiagnosed Genetic Condition

Enter other significant conditions contributing to death but not resulting in the underlying cause given above:
Undiagnosed Genetic Syndrome

Were autopsy Findings available to complete the cause of death?  


We asked them to take and freeze a sample of Gavin's DNA.  When there are advancements in genetic testing (he's already had every test offered) maybe we will finally crack the Gavin code.  And maybe it will spare another family the heartbreak of a sudden and unexpected death such as this.  And I'm still holding out hope that the final results from the autopsy (which can still take weeks to come back) will shed some light onto why this happened.  The day before, I was racing for the camera because Gavin was "dancing" independently for the first time ever.

And that next evening, I knew we were losing him.
I'm not sure I will ever understand why.

But I do know - and have known since his birth - that Gavin is a very special soul.  He was, without a doubt, sent here on a mission.  And based on what I've seen and heard - and the amount of people and lives that have been touched and changed by his story... he more than accomplished his holy work.


  1. Thank you so much for being so honest about your grief. I lost my youngest son on April 3, 2013 and reading along with your grief... witnessing another human being go through the nadir of life has been reassuring to me that I am not going crazy and that grief just sucks for everyone. I am so sorry for the loss of your sweet Gavin and will abide with you as you write out your pain.

  2. Thank you for sharing again. Although I am a relatively new reader of your blog, I look forward to your posts everyday. My heart aches for you and your family. Your words fill me with awe and understanding, and, quite honestly, a deep fear. I am so scared of losing my babies like you lost Gavin. I pray daily that God grants you even a tiny bit of peace each day - a ray of sun or your favorite song on the radio. God bless you.

  3. Just sending you guys lots, and lots of love Kate.

  4. Bless you. I have three small children and tend to block out the sad stories "out there" because being a mother makes your heart so very vulnerable. I am drawn to your story though and reading each entry is devastating to me because any of us could easily be going through what you are enduring. I cry for you. The insight you provide is helpful to those of us who have friends/family who have lost a child; it gives us better tools to understand what they are going through and how to help. So thank you, for sharing. Continuing to lift you up in prayer. -Amber

  5. It's not fair. I'm so sorry. My heart is breaking for you.

  6. Sending hugs and holding space for you. Lots of people learned to be a little more vulnerable because of you and Gavin and that's a good thing.

  7. Dear Kate,
    I think because of your wonderful writing skills and your openness to share, you let so many strangers meet your family and yourself. We read about your little Miracle Boy and cheered on his triumphs all while seeing such undeniable love from the whole family. When Gavin got sick, you continued writing and allowing us to know and pray and send message to you and your family. We cried for him, we cried for you and Ed and we cried when Brian said his good byes. We are strangers but felt like part of Gavin's team. But while we (the readers) commented, I think we have set you so high up on a pedestal that you are now afraid of heights. It is okay to be broken now. It seems like you are not feeling worthy of all the praise and admiration people are bestowing on you and you want DOWN from that pedestal, so you are sharing all the ways you are human and hurting and lost. That makes us love you even more.

    Kate you did not fail Gavin. You did not fail Brian, nor did you fail Ed. There was something unfixable in Gavin's little body, something that neither love, medicine nor faith could change.

    You write as therapy but if the comments are causing you anxiety right now, turn them off. Write and write until you've said everything you need to and when the time is write, you can open the comments up again.

    Many hugs from Kathy in Emmaus, PA

    1. This. Perfectly said. Wishing you peace.

    2. This. I am so sorry. Grace and strength to me come from the place where our heart is most raw and real. THAT is what I see in you. Anger. Betrayal. Sorrow. Pain. Laughter. Joy. THAT is strength.

  8. Writing is SO cathartic. The more you share, the bolder I believe you will become. There's so much love among writers and their networks.

    As for how to deal with outpourings of support, just accept it and realize that it makes people (us) feel good to do things to cheer YOU up. It's a win-win.

  9. Kate, those of us that said you were handling with grace were simply going on the fact that you kept writing. That you were so thougtful in your actions throughtout this horrible situation. You took time and with beautiful words to tell us what was going on.

    I still think you are handling this with grace. I think that you opened yourself up with your Mamastory for a reason (you just didnt know it at teh time). I think you are strong, (maybe not right now) full of grace (just look at your post about helping Brian understand), and helping others while you share your raw and unhiding pain. I will say that it is refreshing to hear that you cursed strongly while throwing things and even strong and graceful people have heated conversations with God. I know I certainly have.

    You are helping people as you help yourself by writing. You dont have to do anything for us readers except keep being you, honest and true, and tell us about your days. Look at what G says. Sometimes even warrior mamas take thier kids to school and go home to bed.

    Sending you love and comfort...

  10. I found you through the Momastory (through Brené Brown). As a fellow mom, I don't have words for you right now. My heart aches deeply after reading this. I just want to give you a virtual hug.

  11. In a world filled with the superficial, the vain, and the fake, you are real and you allow us to see that reality. 'Grace' doesn't mean you handle everything well. It means that you do as you say - you keep putting one foot in front of the other. Nothing more than that. You are human and you've gone through one of the most horrible experiences a human can face - losing their child. Like another commenter said above, if the comments and emails are too much, turn them off. This is YOUR blog and YOUR therapy - let it be such.

    Thank you for sharing Gavin with us. He was AMAZING and he has an AMAZING family.

    You'll find something to fill the space. Not tomorrow and maybe not the day after. But you'll find something. Or it will find you :)

    You have so many people praying for you, for Ed, for Brian, for Miss Sara and everyone else in your life that loved and misses Gavin. When everything else gets to be too much, just focus on that.

  12. Please be kinder to yourself. I do admire your strength but not to put you on a pedestal. You are making a choice to show up (as Glennon would say) each day and live. You are strong for choosing to find meaning in what you can and to hold out hope that someday it will all make sense. I watched a friend lose her daughter and she taught me that devastating sorrow and joy can coexist. I had not truly understood that before. You teach me by the choices you make and by sharing your thoughts openly. That doesn't make you, nor do I expect you to be, perfect. So please, keep showing up and writing and be kind to yourself. We don't expect you to be anyone else than who you are.

  13. I pray that one day you find the answers to what Gavin had. He was so very special to your family and to all of us that prayed for him and looked for his updates everyday. No one will miss him like you and your family. Your grief is exactly that, your grief. There is no right or wrong way to grieve. Do what makes you feel better, what soothes your heart and soul, and know that Gavin remains with you always in the treasured memories that you have written and shared. You are strong, and you traveled a hard journey with your little angel. Give yourself time. Your writing inspires people. It helps people, and it lets them know that they are not alone in their feelings. May God send you comfort and all the answers you seek. God bless you and yours.

  14. Kate,

    Very moving, thanks for writing this... It was especially poignant for us bc we just had our first son. My wife, Elise Krejci, MD was in tears many times while reading your blogs. I hope thinking about Gavin will bring you and your husband peace. You are great parents, and were a success with Gavin even if his outcome wasn't what you'd have hoped for.

    Ali Mian, MD

  15. Of course my story isn't exactly the same as your story. No two stories are exactly alike. But I too knew before my husband or other family members and friends that Isaiah was going to die. He was not going to make it.
    The way you describe how you felt at the moment you knew is exactly how I felt too. After I knew, I fell asleep. I felt horribly guilty about that for a long time. Sometimes I still do, but I had been up over 48 hours by that time and my body couldn't take anymore. I was by my sister saying the Dr. wanted to talk to me. I already knew what she would say: Isaiah was brain dead.
    Thank you for sharing Gavin with us. Thank you for sharing your grief journey with us too.

  16. Thank you for your raw honesty. You don't have to be anything you aren't--don't have to pretend to feel something you don't--you should be free to be who you are, however you are. Hugs.

  17. Oh Kate! I remember watching that hat visor of Gavin dancing and getting teary eyed. I didn't realize it was the same day he went into cardiac arrest! Do whatever you need to do to help you get through this very hard time. I never expect an answer from you on here as many people as you hear from, especially now, and I am sure everyone feels the same. If you want to comment or send thank you cards, by all means do so, but please don't feel like you have to for us. We love you for who you are and for your family you share with us. Not how PC you are! You have way too much on your mind to worry about being a people pleaser (as one myself I know you probably will still be), but please don't ever feel we expect it. We love you for you and are here to try to relieve some or your hurt and pain, not expect you to do that for us. I am praying for you every day. It's all I got! Wish there was more I could do. Hang in there!!

  18. I have never read a more open or loving tribute to a child. I agree with many of the prior responses. You and your husband are great parents. The strength you showed was the strength of a loving mother. There is nothing stronger in this world.

    My mother believed that the body was simply a house for the soul to dwell and I agree with her. You say that Gavin was a "very special soul" and I couldn't agree more. That soul and that spirit brought many lessons to those he touched. Those lessons will endure.

    Just because we stop grieving doesn't mean we stop loving. My hope is that in due time you overcome your grief so the overpowering light and love that Gavin brought to you and everyone he touched will always shine through.


  19. As a grieving momma, so much of this spoke to me: writing for myself as therapy (feels very self indulgent), wanting to scream at strangers that my daughter died, waiting for doctors to tell us if this was the time she would die, or this was, or this was. I'm so sorry.

  20. Kate, what a beautiful, beautiful post. We will likely never meet, but I love your words and your obvious love for your children. They are truly God's spirits - as are you. I hope this spring can be a healing time. I'm very sorry for your loss, but I thank you for your word; they meant a lot to me.

  21. I am so sorry for your heartache, pain, and sadness. Not only do I believe no answer exists on this side--but none could ever be good enough. Gavin should be here longer than you. He had more to do. You had more to do with him BY your side. I pray that you are blessed with a patience that is unshakeable and I can only imagine the amount required to be patient enough to try to ever so gently place your shattered bloody heart back into your chest all the while living a beautiful life to honor your children until you get to back Gavin and Darcy Claire. Love to you, Ed, Brian, Sara, and the many many more who loved and adored Gavin.

  22. I'm sorry for your loss. My heart and throat hurt as I cry thinking and reading your story. I'm sorry. I believe in heaven and forever families and know you will see Gavin and Darcy and your sweet babies. Nothing is lost under heaven.

  23. I wake up every single morning and the first thing I do is check my email for a post from you. You are so much in my heart and my prayers. I don't think anyone could reasonably expect you to answer every comment. I definitely don't. I'm praying for God's love to just pour out over you.

  24. I am new to your blog. My heart breaks with you. Thank you for your vulnerability. There is no way to make sense of loss, though you are making sense to us by expressing the rawness of grief. I've noticed we don't honor/express grief very well in this country, so thank you for showing us how to just be where your body is: present to grief. However it comes out: smiling, throwing something, being numb, or raw, broken, heart bleeding. All responses belong.

  25. I am also new to your blog and all I can say is that you and your family will be in my thoughts and prayers.

  26. Thank you for sharing Kate. I am currently in the ICU with my 13 month old, Florence, who was recently extubated. She got a cold. Now pneumonia. She has SMA 1, a genetic neuromuscular condition. Although your posts grieve my heart, I sense a vast mountain of strength in you. Thank you again.

  27. I'm pretty sure Gavin snuck out of heaven to live with you, and he had to get back in a hurry because someone realized he was AWOL.

  28. Thank you Kate - yes all of those things 8 years later, still fresh...

  29. Over the last week, my dear friend has whispered into my ear, "I left my baby at the hospital. Who does that?" And I kept thinking of you. Her 14 year old baby is gone and we'll never know the answer to the same question plaguing you... WHY. Ugh.

  30. I am a transplant mom and can relate to having my identity wrapped into my little girl - all of her therapies, medical needs, attention, questions. It is a full time job. Just want to say I have been following your journey and can feel Gavin's spirit through your words. Thanks for sharing him with us. (Please do not ever feel the need to reply to my comments - take care of you.)


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