Thursday, April 25, 2013

The Grief Ladder & And Gavin's Godparent's Eulogy...

Grief is a tricky thing.  The days we spent in the hospital were the beginning of the journey.  One minute one or both of us were sobbing all over Gavin's little body.  The next minute we were calmly talking to doctors or nurses or the chaplain about his impending death.  Many people asked me, "How can you be so calm????" and I would always, without a doubt, feel a splash of shame on my face.  I would think, 'Maybe I'm not acting enough like a grieving Mom.' 

I was able to talk about his condition - his medical interventions - his brain damage - his organ donation - like a robot.  Devoid of feeling.  Sometimes I would feel that splash of shame again - how am I walking through this?  Why aren't I falling to the floor in a heaping mess?  

Planning the funeral kept me busy - and further from the grief.  It allowed me to focus my energies on "doing" for Gavin - something I'm so, very used to.  In a strange way, it made me happy to be "doing" for him.  It almost - even if it was just for a few, fleeting seconds - helped me forget he was dead.

Now that I've been to the other side - twice - I can confirm that there is truly no "right" or "wrong" way to handle times like this.  You're on a ride that you can't control... and can't get off... and you just have to hold on and don't let go.

The last two days have been tough.  It's all behind us - the chaos of the emergency room and the helicopter ride... the long hospital stay as we slowly watched him drift out of his body... the funeral preparations... the exhausting two days of his formal goodbye.  Now we are home and have mountains of cards and emails and facebook posts and gifts to go through.  We have Brian and school and constant questions and non stop energy and "let's do this - let's do that - chase me - read me a book - no, let's do a puzzle." We have life issues that don't pause for death - taxes and insurance issues and grocery shopping and more.

Yesterday I felt the range of emotions.  At one point, extreme rage.  Angry that my son is gone.  Resentful that I can't just be left the hell alone.  Pissed that I may not live up to expectations or be able to acknowledge every act of kindness properly because I'm drowning.  I'm drowning.

Then I felt happy.  How is that possible?  Well, when your little ray of sunshine comes bounding into the kitchen proclaiming, "I'm a rock star, Mama!  Let me play the guitar for you!!" it's kind of impossible to control that emotion.
Brian is impossible to ignore.  He makes his needs known, wriggles his way right under your grief and settles comfortably next to your heart.  It's very convenient for two parents who might have some single focused moments.  We appreciate him for that.
Brian went back to school the day after the funeral - and also today.  His teacher tells us that he did very well and was happy to see his friends.  On the first day he was back, the butterflies they had watched grow in the classroom were, coincidentally, ready to be released.  Brian was chosen to hold each of the butterflies as they flew out of their old home and made their way into the sky.  I am so, so grateful to Brain's teacher, Miss Laura, for how she has gone above and beyond to protect our son's heart during this time.  She consulted a school psychologist, she read a book on grieving, she gave Brian a book that she personalized to help him through his process (which was the most amazing gift), and she has been so, so supportive.  We can't thank her enough.

Everything is coming in waves, which I guess is to be expected.  Ed will make himself busy and want to pepper me with questions and plans and details.  He may not know that I'm about to burst and was wanting to just have quiet for a while.  We constantly need to check in with each other - be patient with each other - respect each others positions on the grief ladder.  It is too easy to take things out on the one closest to you - we are trying VERY hard to be conscious of that and forgive each other.  

And then there are times that we're on the same page.  Like last night - after watching this video:

We laid in bed together and wept.

This is not easy.  But we will not let grief swallow us whole.  Gavin is here with us, we know, and he is helping us get through this.  I think he even helped me last night by sending me some extra strength when I threw a box against the garage wall.

It felt good.

The last eulogy at Gavin's funeral was given by his Godparents... my brother, Tom, and my sister, Bean.  I couldn't have chosen better Godparents for him, truly.  
Tom is a lawyer and is so used to public speaking that he only scribbled (and I mean that literally) a couple words in an outline for his eulogy and then he delivered it perfectly and eloquently, of course. He even asked, on behalf of Ed and me, for all the professionals that helped Gavin over his 5 1/2 years (teachers, nurses, doctors, therapists, etc.) to stand so the whole church could applaud.  It was definitely a 'moment.'  All that to say, I don't have it in print. But it will be on the video that at some point will live permanently on this blog.  But here is Aunt Bean's eulogy - which was remarkable and delivered with such grace.
For many of you here today, you know Gavin as a superhero, saving lives and changing the world.  

Well, to me, Gavin was my Godson, my nephew, my sister Kate and her husband Ed’s first born son, the big brother to Brian, my parent’s 17th grandchild and a cousin to many, including my own children.

My Godson – the boy who I was to encourage in his walk of faith.   Yet, somehow, this little boy inspired me in my faith.
My faith in hope… My faith in ‘keeping the faith’… My faith in the power of love.
Gavin faced many challenges in his short life and served as an inspiration to many with his perseverance and hard work.  From the start, Kate and Ed were told that Gavin had permanent hearing loss; he may never eat without a feeding tube, may never sit up or communicate.  But we had Faith, Hope and Love on our side.  

Gavin faced his challenges with patience, courage and determination.  
In his own sweet time, with the love of his parents and brother, and the many therapists who so lovingly worked with Gavin,  he would learn to eat pureed foods,  he would sit, then crawl, stand up on his own  and just this Christmas he started walking independently!  He looked so proud of himself, too. His hearing was miraculously restored and just in the last few weeks he communicated with his teachers at school by finding and pushing the button that spoke ‘I want water’. 
We had faith in him, hope for him and we loved him.
Gavin had fun too… He rode the fire trucks and merry go round with his brother Brian on the boardwalk in Ocean City NJ. And sat up in the sand by himself while waves crashed over his legs.  He loved books, and music and everything to do with water… the bathtub, the ocean, just splashing in the kitchen sink. 
Gavin shared his love with everyone he met.  Without ever speaking a word, he was able to communicate his love with a silly giggle while playing with his Daddy, or a sweet smile to show off his dimple to Granny, with a simple touch to his mother’s face or his brother’s arm.  There is an undeniable bond of love between Gavin, Kate, Ed and Brian that will remain forever.

We can all learn a lesson from this remarkable, sweet, 5 year old  boy.  Never underestimate the power of faith, hope and above all… Love.

Thank you, Gavin!


  1. Screw expectations, and don't worry about responding to every act of kindness. People who took a minute to send you an email or FB message certainly don't expect a response (at least, I believe most people don't). They did it to attempt to bring you a measure of comfort, not to be thanked or recognized for it. Do what you need to do to keep your head above water...that includes throwing things! <3

    1. so well stated. my thoughts exactly!

    2. I agree as well!!! Trust me, Kate, none of us are going to judge you if we don't get a personal message from you. Frankly, I think you have thanked everyone enough. I think if I were you I would be throwing myself on the floor crying just looking at the heap of stuff that you think needs to be responded to. I say screw it and do none of it! (Okay, maybe you should thank the florist, the program person and the people that videotaped it, but that is it!!!)

  2. Don't tell me that you understand,
    don't tell me that you know.
    Don't tell me that I will survive,
    How I will surely grow.

    Don't tell me this is just a test,
    That I am truly blessed.
    That I am chosen for the task,
    Apart from all the rest.

    Don't come at me with answers
    That can only come from me,
    Don't tell me how my grief will pass,
    That I will soon be free.

    Don't stand in pious judgment
    Of the bonds I must untie,
    Don't tell me how to grieve,
    Don't tell me when to cry.

    Accept me in my ups and downs,
    I need someone to share,
    Just hold my hand and let me cry,
    And say, "My friend, I care."

  3. I didn't start reading your blog until Gavin was at the hospital this last time. Since then, I've kept up with it. I have two young boys, 5 and 2.5. Reading your blog every day reminds me .. of how precious they are, even when I'm tired, they're cranky, or we are all having a bad day. I'm so inspired by you and your family, and deeply saddened by your loss. But, I'm thankful that I get to read your words, know of your experience, and connect in spirit. I'll be running a 5k in August in memory of Gavin... the Color Me Rad Color Run in Brunswick, ME. I've named my team Chasing Rainbows in his memory and in honor of your family. As I train for this event (I'm NOT a runner!) I will each time think of you all, and send a prayer your way. I'm looking for an opportunity to do something very special in his memory, and when I find it, I'll tell you. And, like another poster commented, you DO NOT need to reply to us all! We just want you to know how many of us think of you, pray for you, shed tears for you, celebrate Gavin's life with you, each day. It's our small way of connecting, of providing just the smallest comfort in these very dark, very difficult days. May peace be with you and may you know that there are thousands (tens of thousands?) of souls lifting up Gavin's memory and spirit each day.

  4. Thankyou Gavin for inspiring me in many, many different ways you truly are a SUPERHERO xoxox

  5. Do 'this' -all of it- in your own time.

  6. Kate
    I don't know you...I only started reading your blog a few weeks ago, adding it to the short list of special needs blogs I like. I'm a 17 year old triplet and my sister Rachel passed away 7 1/2 years ago in October of 2005 at the age of nine. She had cerebral palsy, and, like Gavin, she touched more lives in just under a decade than many people do in nearly a century. God knows what He's doing. The night I read Gavin died, I prayed for Him to introduce Gavin and Rachel to each other in Heaven. I think He did. And I can say with confidence that both Rachel and Gavin are partying it up in God's Kingdom tonight--Laughing, playing, yelling, dancing, singing. Freed of all their earthly burdens and smiling down on us.
    In my opinion, the 7 stages of grief don't exist. It's not linear, it's not predictable. So do what you need to in this traumatic time...Scream, throw things, cry, pray, sing. Your emotions are validated...whether you're joyous or weeping. I'm still praying without ceasing for you, Ed, Brian and Gavin.
    God bless you and your family!

  7. I thought every single eulogy was meaningful and memorable, and am finding new meaning as I read them over and over.

    Please, please, please, do not worry about thanking anyone for the acts of kindness, NOBODY is expecting that. In fact, just the opposite. You do not have to answer emails. NOBODY is expecting you to. You do not have to acknowledge gifts, NOBODY is expecting you to. I know what an unbelievable kind, considerate, caring person you are, but right now, you have to let go of the "musts" and "to-dos" in your head, pressure you don't need. You need to just be thinking about yourself, Ed, Brian, that's IT. You need to be me-centric and family-centric to recover from the extreme trauma, work through grief.

    One day at a time, sweet friend. One day at a time.

  8. Hi Kate, I just found your blog and I have been in tears reading through your recent posts. I know your heart is hurting so much right now, but I want you to know that even though I do not "know" you, I still KNOW that you are the most amazing mother ever to your beautiful boys. Reading about how you literally went to the ends of earth to do everything possible to get your boy healthy. Yes, you will never stop being Gavin's mommy even though right now he has a new home in Heaven. It will be a glorious day indeed when you are all reunited again. Until then, please keep living, loving and inspiring others because you are so ,so good at it. Lifting your family up in prayer. Much love and light sent your way from a stranger in NYC.

  9. I found your blog link via a page that I have liked here on FB just a couple of weeks ago. Since then your grace and amazing strength has spoken to me in ways that I can not put words to. Take time out for you, Ed and Brian, they are all that you need to concentrate on at this time - the rest can wait till later or never. Your words and messages in your posts both here and on FB are more than thanks enough , and no one individual will want or need a personal thank you during this one of, if not THE HARDEST time in your life as you negotiate a life where Gavin the amazing SUPERHERO is in your world spiritually rather than physically. God Bless and my prayers are with you.

  10. My wife showed me one of your facebook posts and my heart just breaks for you. I can't imagine the pain that you're going through right now. But when I read your story, I instantly thought of the Isiah 35:5-6

    "And when he comes, he will open the eyes of the blind
    and unplug the ears of the deaf.
    6 The lame will leap like a deer,
    and those who cannot speak will sing for joy!"

    What a thought to imagine Gavin leaping from his earthly body into the Heavenly arms of our Savior.

    I pray for your guys are TRULY amazing!

  11. Ann Dillon TannousApril 26, 2013 at 6:26 AM

    So many beautiful posts! There is a nice song version of Isaiah 35 called "A Time Will Come for Singing".
    Kate, as everyone has said, please don't think about thanking people. Thank the few directly involved with Gavin's care or funeral. All the rest thank in your blog and facebook. We know you want people to know you are grateful for their support, but have enough faith in us to know we know that, and that we have already been thanked by "knowing" Gavin and you and Ed and Brian. We are grateful to you for allowing us to share your journey. We are grateful to you and to God for the profound effect Gavin has made in our lives.
    No one thinks you are not showing "enough" sorrow. First, everyone grieves in his or her own way. Second, it is so obvious that you are trying to honor Gavin by having a beautiful funeral, just as you gave him wonderful care. And by doing this, you are also not falling apart because you have to get this done for Gavin's sake. But I worry about you, because there is a fine line between grieving and coming undone. Please don't let your grief become so bottled up you burst. You want to be strong for Brian and Ed, but they will take their cues from you. If you are angry, be angry. If you want to cry, cry. If you just want to be happy because you know Gavin is free now from earthly restraints, then be happy. No one is judging you. At some point you may want to speak with a therapist or grief counselor. Sometimes we don't want to burden our family with our grief because we know they are grieving, too, and it helps to unload to someone not directly involved.
    We love you, Kate, and we pray for you and your family.

  12. Ann Dillon TannousApril 26, 2013 at 6:32 AM

    P.S. When I said just thank everyone on your blog or on facebook, I meant one general thank-you.

  13. Kate, I am so sorry for your family...I really enjoyed being part of Gavin's life journey even if I only met you (this blog) some weeks ago...I really was enjoying it...I am sorry.

    Whatever you feel and do it is ok. I don't really like it when people say that they would not be able to make it through...because when life throws you have to catch them....there is no other mothered and are mothering Gavin. Now you also need to find time to collapse, but you will never stop mothering Gavin nor Brian and that is what will keep you going on...because unfortunately...or fortunately...we have no choice...

    I appreciate your strength and your positiveness but above all I appreciate the way you love...I appreciate that very much. I just hope that through knowing Gavin and knowing you I grow to love more and better.

    Please understand that I am not giving you less credit for what you are going have all my the same time...I want you to know you are not a weirdo...this is what mothers do, this is what people do...and you are doing it full of love, therefore it is well done, because no bad can come out of love.

    I don't like that your baby died...I don't like it at is difficult to even write it. I don't like it. It hurts.

  14. Please take some time to rest, there will be time of all of "that" later on, if at all. No one is expecting you or Ed to thank everyone for the acts of kindness or for the gifts, if they care about your family at all they will understand that. Your focus right now should be on each other and Brian and adjusting to this new life.

    And if anyone thinks you're not grieving properly, tell them to jump up their own butt. There is no rule book on how to deal with losing your child.

    Lots of love to you,Ed and Brian <3

  15. What all the previous people said, just take time for yourself and your family. Please do not worry about living up to expectations. Just be easy on yourself. You are and always will be an amazing mother. Such amazing grace and strength that will carry you through. Now is time for you to take a rest, breathe, and most definitely let go of expectations. Hugs to you and your family. You are in my thoughts and prayers.

  16. Kate, I know we have never met before and probably never will, but I just wanted to remind you that there is no such thing as the perfect way to handle grief. We found out that we were going to lose our son while I was still carrying him- and I remember people saying things like "You're so calm" or "I can't believe you're still working"... but they didn't see me at home, where I knew I was safe. There were times that I kept it together because I had to for my daughter, just like you will do for Brian... and there were times I couldn't because the grief was too overwhelming. I know you've already experienced that with Darcy Claire, but sometimes we all need reminders that there is no perfect way to grieve, and you have no need to ever feel shame or guilt. (((Hugs))) You, Ed and Brian have been in my constant thoughts this week.

  17. Oh, Kate. Somehow I missed this post and just saw it. That video of you two---it is just so evident how in love you both are. I see the smile in his eyes. Oh, how he knew he was loved. And he knows even moreso now. You were such a gift to each other. Thinking of you in your grief...

  18. (I share in the hopes of making you smile just a little...) I just wanted you to know that my son still wears his "Santa's Helper" Christmas pajamas too. I was glad to see we are not the only ones. : )
    Constantly thinking of you and your family...


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