Sunday, April 21, 2013

Dear You, When It Comes To Funerals...

Dear You,

I hear you're coming to one of Gavin's special services.  Whether you're coming to the viewing tomorrow night or the funeral Tuesday morning, I want to say thank you.  And I also want to say... I know you are probably nervous.

So am I.

I remember my first (and only!) memorial service for a child.  Way back when, when Gavin was an infant, the two of us lived at Nemours A.I. DuPont Hospital for Children for a few months.  He was very sick with RSV and Botulism and I was also very sick with worry and fear.  During our stay, he contracted a bad stomach virus.  This was the worst case scenario for me.  I never liked to leave him alone - but with all of his blankets and clothes from home I was forced to do wash in the hospital's laundry facilities they provide for parents.  I would wait until he was sound asleep - BOLT down the hallway and throw my wash in - BOLT back to the room - repeat.  One day, breathless from my run and tossing laundry into the washer, I met Amy.  She introduced herself and asked why I was there - I told her my tale of woe about Gavin's illness and now the stomach virus.  She told me she was there with her daughter, Arden, who was fighting Neuroblastoma.  I always tell people that you can't compare pain - that everyone's battles are important and scary and all uphill to them - but I won't lie... in that moment I felt like a big jerk.  I had very little to complain about next to Amy.

I said goodbye to Amy and my washing clothes and BOLTED back to Gavin.  He woke up and things went south for a while with him which required my attention... and I just forgot about the laundry.  Amy did not.  A while later, the nurse carried in a pile of perfectly folded clothes and said, "Amy from the laundry room wanted me to deliver this to you."

Grace.

Unfortunately for Amy - and the world - sweet Arden passed away.  I was crushed.  I knew I wanted to go to her memorial service and support Amy in any way I could.  Ed was out of town and I was pregnant with Brian.  The thought of going alone induced major anxiety.  But I kept thinking of Amy - and her grace.  I knew I had to do this.  I decided I'd feel better if I had a job, so I nervously approached Amy and asked her if she wanted me to photograph the service so she wouldn't forget any of the details - pictures of the church, the photo boards, the weather... anything.  I ended up making her a video that evening - it made me feel less helpless.

Driving to the church that morning, I was shaking and crying the entire way.  I remember rehearsing what I would say when I saw them.  When I got to the parking lot, it took me about 15 minutes to get up the courage to get out of my car.  I was SO nervous to see them... ESPECIALLY nervous to see Amy.  I really assumed I would find a broken Mother who needed someone to hold her upright.  I couldn't believe it when I saw her and she seemed to take on the role of comforter to everyone who approached her.

Grace.

Dear you,

All this to say, I have been there.  A child's funeral is awful.  Please don't be nervous to see us.  Please don't worry about trying to figure out what to say.  We know there is NOTHING you can say that will reverse the order of events that brought us here.  But also know that it's possible you'll fumble and say the absolute wrong thing.  We don't care.  There is no right - and there is no wrong.  You being there to show your love for Gavin and our family is enough.  A simple silent hug works for us.  We love hugs.  And don't worry about trying to hold it together - if you're like us, it's sometimes hard to hold it in.  We won't expect you to.

Me?  Right now I am falling apart.  Yesterday and today were very difficult, emotionally, and I have been struggling with pretty bad anxiety.  It's been very busy - my sisters and nieces and Mom have been here helping with photo boards and entertaining Brian (who has been having a great time with his cousins over the weekend) and ironing my dress and hugging me and helping me edit a program that, thanks to Meghan from hope.joy.photography, looks more beautiful than I could have imagined.  She was so generous to donate her time to design them - and even had over a hundred people on my Facebook page wanting to donate to her paypal account to pay for them.  Something I didn't expect - but too many people were wanting to help.  She is planning to give the leftover money to one of the charities we chose in honor of Gavin.  And our wonderful friend and the boys' regular hairdresser, Silvia, made a house call today to trim my hair in my bathroom. People are amazing.  We have been surrounded by love.

I am hoping I can learn from Amy and have even a fraction of the grace that she showed at her beautiful daughter's service.

But I can't make any promises.

Love,

A Mommy with a very broken heart.


P.S. - You know how people make photo boards for funerals?  Do you also know how many photos I take of my children?  Imagine combing through each day over 5 1/2 years - multiple photos.  I had a very hard time choosing - so there are two photo boards for each year.  You might want to come early if you want to see everything.  And please humor me and tell me you looked at every single one?  I remember every moment in every photo - what we were doing, where we were, why we were laughing... and that says a lot for this old lady with a bad memory.  I can't remember my passwords, but I remember every moment with all of my children.  They are ingrained in my heart.


54 comments:

  1. Prayers for peace and grace in the coming days.

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  2. Praying for peace and comfort you guys always! <3

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  3. You are an amazing wonderful mother....Prayers to you and your family from Keokuk, IA

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  4. Dear, sweet, precious Kate --

    There are no words. Your grace is miraculous. I have no explanations for the peace you've given me -- imagine, YOU giving ME peace! -- but I'm grateful. Gavin is a lucky and blessed child.

    I love you, Sister.

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  5. Prayers from Australia as your journey continues in a new and uncharted way. May you find the grace and strength you desire in the memories you relive, the hugs given, the love expressed and the prayers sent specifically for you and yours.

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  6. Amazing, simply amazing. Just moments ago I was sitting here questioning my decision to attend the service on Tuesday. Is it right? Is it weird? After all, I don't actually know you, even if my heart does.

    For days now I have wanted nothing more than to reach out and hug you and celebrate the life of your amazing little boy but I kept second-guessing whether I would know what to say or how to act or heaven forbid - what if I can't keep it together? And then, just like that, you send me, and all of the others like me, the most perfect letter. Now we realize that we are not alone in all of our worry and our doubt.

    How is it even possible that in the midst of all of your pain and grief you are still worrying about us?
    Your strength and grace know no bounds.

    So don't you worry, we will all be there. We will wear blue and be perfume-free. We will look at EVERY single picture and read EVERY word of that amazing program and we will CELEBRATE the 5 amazing years that Gavin blessed the world with his presence.

    After all, It's not every day that you get to go to the funeral of a Superhero and thanks to you, I now know that I wouldn't miss it for the world.

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  7. You are an amazing mama - sending you so much love. I wish I could be there to help. I love how eloquently you write about your sweet family - I feel like I've met them in person. Sending you all the prayers and love I have to get through the next few days <3

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  8. We wiill be at the funeral, and we will look at your precious pictures of Gavin. Thank you for posting this, it is hard to know what to say. But I can offer a hug, many many prayers, and a listening ear if you ever need to talk to someone about your wonderful moments with Gavin.

    Praying for your family in the coming days!

    -Tiffany Kuenzi-

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  9. My heart and spirit will be with you and your family tomorrow, Tuesday and always, I have carved your family there... God bless..

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  10. I wish I could attend. I'll be there in heart though. Sending lots of prayers. I've been to 2 funerals for a child, one was for my stillborn brother and the other my stillborn cousin. It is difficult at any age and you're right, everyone seemed to be on pins and needles when all we really wanted was just a hug. Many Prayers to you and yours!

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  11. I see a lot of grace in you as well. Continued prayers...

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  12. I wish i could come. Your little Gavin and his smile reminds me of how my oldest boy looks, he's only three. He was a preemie along with his twin sister and now healthy though still a little behind. It rips my heart out whenever i read and i start to cry to even imagine what your going through. I heard a song off of Paramore's newest CD, last hope, i think it was...anyway, i listened to it and cried for you and your family.

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  13. Grace. It's in every word of that letter. Praying for you always, from Boston.

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  14. Kate, your ability to think of others at every turn is so amazing. I have never met you in person but have been planning on attending the wake service....but felt that I would say the wrong thing (as I have been known to do. ha). Thank you. Be prepared for a scent-free hug that I hope can help in some very small way.
    - Sheila

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  15. You are the grace that you speak of. Hugs.

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  16. Your story has amazed me!! My heart breaks for you. I have been thinking of and praying for you guys since haring your story. I will continue to pray for you. Thankyou for ssharing your story!

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  17. Praying for peace, comfort & strength to you & your sweet family! <3

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  18. Prayers for all of you tomorrow. Hugs and love.

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  19. I have been reading your words and wishing there was something I could say to ease your burden or to share your grief but there isn't. But please know that there is another family fron AI DuPont that shares some of your doctors and experiences and have three children like you, Gavin 8, Owen 7 and Brynn 23 months, that is thinking of you and your family!

    Susan Reazor

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  20. 10 photo boards sounds about right for the Leong family. :-) I intend to look at every one, because I still can't believe I will never get to meet this sweet boy in person. You will be fine, whatever happens. We will all be fine, whatever happens. There is no right and wrong as long as we are all coming from a place of love and compassion--which we are. Gavin has brought us all together and we will be there for you and for each other.

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  21. Beautiful, just beautiful. I wish I could be there to give you a hug. To look at each and every picture of sweet Gavin. Tomorrow we plan on doing our random act of kindness in honor of your birthday wish. You, my dear, are GRACE. Thinking of you and sending prayers to you and yours from Salt Lake City.

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  22. Hello Kate,
    Someone I know posted your blog and sympathies on Facebook - so I started reading your story and haven't been able to stop. I almost feel as though I know you and you family from reading all of your posts - and I am so sorry for your loss. You are a wonderful mother from everything I've read and you and Gavin are an inspiration to everyone you've come across even if just online...

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  23. I rarely use the word grace.....but in the last week I've used it to describe you when sharing your story and love for Gavin. I can't be at the services, but I will be holding Gavin, Brian, Ed, and you, dear, sweet Graceful Kate very close in my heart.

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  24. You will be in my thoughts. Hugs from far away.

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  25. Kate, I truly don't believe I will ever again meet someone as full of grace as you, and so I wasn't surprised that you'd thinking about visitors at a time like this and offering them comfort. I told someone I actually can't wait to be there and give you a hug. And you can bet I will look at every single photo of Gavin. And you don't owe any of us promises about how you will behave. We have no expectations. We just want to be there for you and help you commemorate and celebrate Gavin. I will see you soon. xo

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  26. Thank you for inspiring all of us.

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  27. Kate,
    I have been where you've been. I have been where Amy was. I too had a wonderful, beautiful child given to me by God to take care of. A child that was born with a chronic genetic disease. Long years of treatments, road trips to doctors, hospital stays and fighting a battle that we ultimately didn't win. Our daughter Jennifer became an angel on Jan 16, 2007 at the age 16. I wish you peace. I send HUGS from one mom to another. I will be keeping you in my heart and prayers. You and your whole family. Celebrate Gavin's life! Through pictures, through memories, through your example of grace!

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  28. You, dear lady, are the epitome of Grace.

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  29. You and your family have been on my heart for days. I can't imagine much of anything gives you comfort or peace right now but just know there are so many people in this world who now know your story and are praying for you and have been inspired by Gavin and your family. God Bless you and Ed and Brian. I will be praying extra hard for you tomorrow and Tuesday. You are full of grace. There is so much to mourn but also so much to honor. Gavin has touched more people all over the world in such a short amount of time. He is a super hero indeed!

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  30. I can't come to the funeral but please know I will be thinking of you and your family ALL DAY.

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  31. You remind me so much of my own mom who cared relentlessly for my sister for 22 years of illness. I know there's absolutely NOTHING anyone can say or do that would alleviate your pain or bring Gavin back. So I send you a hug. And tonight I will pray for you.

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  32. Amy is not the only one with grace. You and your family are blessed with it as well. Though I cannot be there in person, I will be there in spirit as will many others who will never forget Gavin even though they were never blessed to meet him.

    Thank you for sharing him with us.

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  34. You are the epitome of grace and openness...both such admirable qualities. Sending love, hugs and strength from Orange County, CA.

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  35. I found you only a few days ago, via Momastery, but I have been praying ever since. For everyone. For everything. For every moment.

    I was praying tonight in the quiet and thinking of you...and thinking how GOOD I actually REALLY am when God asks me to do hard things...the HARDEST things...and how impossibly difficult it is to me when He shifts me into a new season. New seasons and quieter seasons are impossibly difficult for me after the tumultuous, chaotic craziness, sadness, and anxiety I have endured the past years.

    No, No, NO!!!
    I. don't. want. change.
    Even though things were impossibly difficult, I had MASTERED the art of being grateful and happy and content in my current, challenging situation.

    Was God not paying ATTENTION to me???
    For Pete's sake!!!
    I've GOT this.
    There is no need to change ANYTHING.
    Can God not SEE how well I am doing??

    I know that this wasn't a season you asked for, wanted, or anticipated.
    Nope.
    It's hideous.
    I can feel it do deeply within. I think it's why the Lord has me praying for you constantly. The need to do so won't leave me. Prayers seem to come out like breath.

    You've planted so much. I somehow just KNOW it.
    Gavin planted so much. I KNOW it.
    I am praying for a bountiful season of HARVEST, and that the fruit/crop that you are harvesting will feed many people for YEARS to come.For lifetimes, in fact.

    I don't pretend to know the how or the why.
    I just know God's love and His amazing grace, and I am praying that those cover you like a shield and a rampart and a comfort tomorrow.
    May you see and feel Him EVERYWHERE.

    With MUCH Love,
    Jocelyn

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  36. I am also new to your family, via Momastery. I came when you asked for help and I have not stopped praying since then. Prayers for health, for love, for answers, for peace, for strength. And selfish prayers to lead me down the same path that you travel, to be a mother and woman full of grace.

    Please know that your entire family, Earthly and Heavenly, is loved.
    Michelle

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  37. So many hugs and prayers tomorrow and Tuesday for you and your family. I'm far away but will be there in spirit. Hope that you feel as surrounded by love and as supported as you have been to all those around you all of your life... Blessings.

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  38. There is nothing to compare with the loss of a child and only those who have known such a tragedy can truly understand you and your family's sorrow. Though words may be meaningless right now, may you find some comfort in the love and concern that surround you from so many who deeply care. In Sympathy and Friendship I keep you and your family in my prayers.

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  39. I can't be there in person, but will be with you in my heart. I hope that you feel surrounded and supported by love today, and in the many days that follow.

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  40. Such a beautiful and very sad post. My heart, prayers, and every good thought go out to you and your family.

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  41. May God bless you and your family and may you walk this journey with peace. You are amazing.

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  42. I wish I lived closer to you because I would love to attend but know that I will be thinking of you in Wisconsin. I think you most definitely must be an angel sent to earth to teach all of us about living every moment and not taking anything for granted. It just doesn't seem fair to me, so many moments with my own children that I was distracted and didn't take photos or really "live" in the moment with them. I vow to change that now and it is because of YOU - you changed me and I will never be the same. Thank you. May God bless you and keep you.

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  43. Alicia K from MinnesotaApril 22, 2013 at 11:33 AM

    My heart is still broken for you and your family.
    I was absolutely devasted to hear of Gavin's passing. I have been reading your caringbridge site and blog since gavin was a baby and even though I have never meet you I feel like you are a part of my family. Your words and posts have been so inspirational. It's amazing. I hope you find comfort in know how many people you and Gavin have touched and inspired to be better people.

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  44. You have shown grace simply by writing this. I am confident that you will continue to show grace and comfort to others in the days to come. Even through tears - the grace will prevail. My thoughts and prayers are with you and your family.

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  45. Hope is the thing with feathers
    That perches in the soul,
    And sings the tune without the words,
    And never stops at all.

    – Emily Dickinson
    (thank you Momastery)

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  46. Dear Kate,

    The face that you could think of others at a time like is just amazing to me I hope I show as much grace in my life as you have shown during this difficult time.

    Yours sincerely,
    Nisha

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  47. While we don't know each other and I've just recently discovered your blog, you have been and will continue to be in my prayers. I've also been the very broken-hearted Mommy at her baby's funeral and I couldn't have written these words more beautifully. I'll always remember the faces, tears, hugs and grace shown to us by so many on that special day. Praying for you.

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  48. I'm so so sorry Kate. I have not been in your shoes, but as my daughter's illness is considered terminal--I have envisioned how I would react to attending services for her if the day ever comes. I can only hope to be as full of Grace as your Amy seems to have been. Please know you have been in my thoughts as I recently discovered your blog. Although I am in the area, I will be unable to come tomorrow as we are currently without nursing and I need to be home with my little one. Know that yet one more will hold you all close in my thoughts tomorrow.

    Peace to you.

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  49. Kate, you are amazing. A true picture of grace. Bryan and I will be there tomorrow. Thinking of you and Ed and praying for you both non-stop.
    Lots and lots of love and prayers.
    Lauren

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  50. I can't be with your family in person tonight but want you to know my thoughts are about you. I will pray for you tonight and tomorrow. I feel particularly drawn to pray for you and Ed and your marriage. Also please tell Ed he is not forgotten. He is an awesome Dad and husband. He and Brian and the grandparents, aunts, uncles, and cousins are in ours prayers too. Michelle in Michigan

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  51. Comfort. How much comfort flees when one we love is gone. Proving it's better to give love than receive. Comfort. It returns through memories. Comfort. It will stay because you will not forget all those lovely moments.

    Kirk

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  52. My heart is broken for you and your family. Sweet Gavin is with our Heavenly Father now. You are in my prayers.

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  53. You exemplify grace. And courage.
    Praying for you and your husband and Brian.
    Thank you for teaching me so much about loving and losing and grace.

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