This has been the hardest day. Even yesterday, the day my Benjamin died, was easier than this. Today he wasn’t here. And I wanted him to be. So badly.

I thought that when we came home I would collapse into our bed and not wake up for days. I was wrong. Every hour I woke, perhaps too accustomed to the beeps and the lab draws and the vitals at 4am. At 5:30, I was up for the day. I took my coffee to the computer and started to write Benjamin’s obituary. It is as painful a task as there is, and it will never do him justice, no matter how many drafts or edits I torture myself with.

I’m so thankful we stayed on the 7th floor for Benjamin’s dying days. Every room in this house holds memories of him in a healthier body. I see him everywhere. I miss the little tilt of his chin and the extra blink he’d give when he asked a big question. I miss the sound of his feet in the hallway, running to surprise me with a big hug. I miss lying on a blanket in the grass on pretty days like this one, looking up at the “Movie of the World” with him. I miss his smell. I miss his laugh. I am terrified of forgetting.

People say this gets easier, but I can’t imagine that being true. How can it be true if it hurts this badly now, and I’ve only missed him for a day? What will happen when I have missed him for a month? A year? How will that be possible? I feel such a huge void in my belly. It’s a big empty space, it’s as heavy as a boulder, and it hurts.

Michael and Banyan have been incredible. We all take turns laughing each other out of the crying. We have hugged and loved so much. Banyan said to me today, “You’re right mom. It does ebb and flow.” All I want to do is remember. I keep hoping so hard that Benjamin will just come walking around the corner right now, like no big deal, and this will all have been one long, awful nightmare.

Kathy and Gana came over this afternoon with a meal. It was hard to see them again, like it will be hard to see everyone we love again. I stayed in my pajamas. When they left, I went back to bed.

I finally threw on a pair of jeans when our dear friend and spiritual counselor Andy came to call. He has offered to shepherd us through the necessary acts of goodbye. We are so grateful. He spent hours at our dining room table, talking, laughing, and remembering Benjamin. I showed him the quilt I made when I was massively pregnant with Benji, and the hundreds of Beads of Courage he’s earned these last 772 days. We talked about final details no parents should ever have to decide. Yet when he left, I felt so much better. We still have work to do. Beautiful work that will honor a beautiful life.

I am so lucky to have been Benjamin Gilkey’s mother. I am so grateful he isn’t hurting anymore. I can bear that burden now, along with the many, many other people who knew him and loved him well. My chest hurts so badly. I know it’s heartbreak. But it’s also pride so overwhelming I think I might explode.

70 thoughts on “After.

  1. I knew this. I knew that somehow, Laura, through this unimaginable and indescribable pain you would know that we needed to hear from you tonight. We were out here with our little (comparatively) sorrow and you would remember us.; hurting, needy, hungry for the touch of your words.. Thank you.. Just ……. thank you.

  2. Holding all of you close. Loving you. So glad you have a counselor. They can really help. Mine was wonderful after I lost my best friend to breast cancer.

  3. Laura, although we’ve never mef, I have been truly touched by your incredible blog. I had a baby brother that died of a rare liver disease when I was 13. I know a thing or two about death and grieving…but you have taught me that it can be done with grace, dignity, honor, bravery, and most of all love. I am truly sorry for your loss. No mother should have to bury their child, at any age. My heart and prayers are with you and your family.
    I believe God allows us to go through tough times, in part, so that His light can shine through us. Your blog has surely done just that. I’m willing to bet that Benjamin is beaming with pride, as he looks down on you; and God is too!! (((((<3 <3 <3<3<3)))))
    May God pour out his healing Balm of gillead and the comfort only He can provide, as you finish this chapter of your lives..



  4. All I know to say is I’m thinking of you. I wanted to honor Benji in some way. I decided we would take the 5 hour drive to the beach this morning. I watched the kids play, felt the sun on my face and I talked to Benji. You have such a gift with words “I know” him through you and I’m confident that you’ll forever be able to read them and the memories will be so vivid. ❤️

  5. Thank you for continuing to share your thoughts and feelings during this painful journey. We continue to pray for you and your family. We love you all.

  6. To the whole Guilky Family! You are the Bravest and most honorable family! The love for Benjamin was given every minute of every day! He couldn’t have done this journey without his Family. We love you all! You will see him in the birds that fly or a beautiful butterfly that touch down in your garden… Love each other in your brave sons honor.

  7. We celebrated Benji today by starting our morning with donuts and the beach. I could feel him in the wind and in the warm rays of the sun. We ended our evening with a homemade lowcountry boil. Every one of these moments reminded me of what an amazing life Benji lead. I ❤️ You so much..and I can’t understand how tough this is for you, I don’t have the right words but I am here..we’re all here….celebrating your amazing boy.

  8. I only had the opportunity to know my little cousin through your words, and of course we just fell in love with him. You are an amazing, and strong mother. All of you are in our thoughts.

  9. I know your loss and want to say remember those happy moments. Benjamin life is not summed up in his death but in the way he lived every moment. Sometimes when we lose someone so young we forget that. Always remember and celebrate his beautiful essence. Time will not fill that void but cover it with warm happy new memories.

  10. Thank you so much for continuing to write. You guys are an
    Amazing family and there are no words to express the sorrow
    That I have for you. God bless you all.

  11. I am so glad to hear that you have assembled a group of people to help you through this. It sounds like you have a great team in place. And of course, there’s the rest of us holding you up in peace, strength, and love. Stay in those pajamas as long as you need to.

  12. Sending you so much love. I don’t know what it is like to lose a child, but I lost my husband at age 38 after 11 years of marriage and 3 young sons to raise by myself. I know about breathtaking grief. The advice I can offer is, just focus on making it through the next hour. Don’t worry about tomorrow, next month, next year. It’s just way too overwhelming to do that. Just take the grief day by day, hour by hour, minute by minute if necessary. The grief never goes away, but you do learn to live with it. You will learn to heal. Just breathe for now. You are amazing.

  13. My heart goes out to you and your family. Surround yourself with love and happy memories, you are all in my thoughts. The moon shone so brightly yesterday morning, then the sun all day. I knew it was benjis spirit. Your Sarasota community is feeling with you…

  14. You are in my thoughts constantly. My heart is broken for you and the excruciating grief you are feeling.
    May the boundless love that surrounds you somehow provide some comfort and peace. And may Benji\’s
    unbridled spirit touch you when you need it most.

  15. Love to you all. The waves of emotions will come and riding them is the next step. Condolences on Benji’s passing is such an inadequate expression….. Sorrow on the loss of such a young life is better, but not by much. I am honestly so sorry.

  16. You don’t know me or my family but we are fervently praying for your family. I heard about your story and started reading your posts, you are a tremendous writer. Your words have taken me along this journey and I am heartbroken for you, for your family. God gave Benjamin to you for a reason, he makes no mistakes. I think anyone of us wishes we had the right words to heal your pain, but we don’t, we won’t. It sounds like you have a great support system, I am grateful for this.

    I hope you continue to journal this experience. There will unfortunately be another mother in your position, a mother who stumbles onto your webpage looking for hope, strength, ideas, answers, desperate. Your experience will carry her through this horrid journey but with one difference, your experience. She will draw strength from you, she will have ideas and a plan. Your journal will be a guide for her, she will cling to your words like glue. Your are a warrior, Benjamin was the ultimate warrior, he will never be forgotten. Benjamin will live on through you and your words.

    I’ve never met Benjamin but I feel like I know him, I will never forget your beautiful, blonde curly haired boy who loved root beer. Thank you, thank you for letting us into your world for we all have a fondness and love for Benjamin as well. We were the cheerleaders hoping and praying for a better outcome. Every time I see a rainbow in the clouds I will think of Benji, I will think of him and smile, I WILL remember Benjamin.

  17. Your pain and loss are palpable through your beautiful and soulful writing. And, your words are also inspirational to all of us – so real, so brave, so loving. I lost my “little sister” when she was 33. She had been diagnosed when she was 29…I was 15 years older and both our parents had died from cancer just a short time before her diagnosis. She was “my child.” I didn’t think I would or could survive such overwhelming grief and penetrating pain. I can see just from your precious writing that you are so much stronger than I could ever be.
    As your friend wrote above, your love for your beautiful son will carry you through this – take each hour at a time.
    Know that there is a huge community out here who feels close to you because of your story – and that we are all praying for you, sending you love and prayers for your continued strength and comfort and peace and hope. You and yours will remain in my heart and thoughts in the days to come.

  18. Laura, By sharing each step of this journey with Benji you have given an incredible gift to our community – one more gift, of many given through the years. As you are proud of Benji for the gifts he shared with us, I am proud of you – your strength, your wisdom, your compassion, your love, your willingness to share the hardest and most personal journey a Mom can take. Love to you all on this day and all the days ahead.

  19. Just what we all needed to hear from you, dear Laura….we all continue to pray for you, Michael and Banyan—you always know just how to put your feelings into words and sharing these words with us has hopefully, helped you tremendously…so cathartic…but, believe me when I say…these words have helped and inspired ALL of us! Thank you for sharing your love….you & Michael are just the best parents imaginable…you have done everything humanly possible for Benji these last two years—ultimately, Benji’s healing has not been of this earth…but the PERFECT healing that comes only from God…God Bless

  20. I once saw an older gentleman describe lost as a shipwreck at sea. You are tossed about in giant waves of grief, that almost drown you coming from all directions. But as time passes the seas start to calm, and you can see the waves coming, prepare for them. The waves are smaller, easier to ride over. The waves never stop coming. But that just means that you loved.

  21. Dearest Laura,
    My heart is with you as you navigate forward.

    I too lost a child. My daughter passed at ACH four years ago with a heart condition at age 16.

    I am here for you. My son, Rogers, is here for your son.

    Know that you are surrounded with love and gifted God’s grace.

    Peace be with you today and all the days to come.

    Beth Knopik

  22. Through the last 2 years we’ve smiled, cried, and prayed. Thank you for sharing this incredible journey with all of us. We loved Benji and we love you. God bless your amazing family!

  23. I am not quiet sure how I came upon a link to your blog on Facebook, but I have spend my entire morning on your journey with Benjamin and your family. His story is unforgettable and while my face is streaming with tears for all of your broken hearts, I can not help but think how beautiful and tragic this last week was. I will say his name every day in remembrance of his spirit and light that lives on.

  24. Laura Michael and Banyan …my heart broke Saturday… for you and your family… I can only imagine the pain and grief you are experiencing….prayers for strength to get you through. .

  25. Your journey with Benjamin is a portrait of courage, love, grace, compassion and bravery. Thank you for gifting us with your words, feelings and thoughts. It will get better, hold on to that, but do the important work of grieving now. Blessings and peace ….

  26. Dear Laura, I have never commented but I have been here all along. Followimg, from afar, watching you and Benji navigate this journey. I felt every step of your journey as if it was my own, I found myself \”holding space\” for you. I\’m not known for being overly sentimental. I am even very pragmatic about death and dying. But your journey, Benji\’s life story, it seered into my soul. I cried my eyes out as I told Ainsley that Benji was gone, then she did too. Our grief was as deep as f he was a member of our own family. I know you, but I can\’t claim to be your friend. We crossed paths, I admire you for your work, our children attended school classes and birthday parties together. We know each other, but throughout this journey I found myself wishing I could claim you as my dearest friend. Yet, somehow, through this process you invited us all to be your friend, you accepted us into your life and allowed us to bear witness to your journey. There can be no greater friend. than the one that allows you to see their soul. Today, I am certain I can speak for many of your followers, we all thank you for allowing us to be your friend. We are forever changed by Benjis life and your friendship.

    Laura Gilkey, you are loved.

    Grief I have learned, is really just love.
    It is all the love you want to give, but can not.
    Grief is loves souvenir. Grief is proof that you loved.
    Love was yours. You loved well.
    -author unknown

  27. May peace, grace and love continue to surround you and your beautiful family. Your story, Benjamin’s story has profoundly changed me. We don’t know each other but as one mother to another – I pray for you. We all mourn with you and celebrate his life.

    Peace and love to you.

  28. I will never forget your beautiful, sweet boy! Not because I knew him personally, but because of your blog. I am in awe of your family’s strength and grace – you, Michael, Banyan and of course Benji the Brave! I am sending you my love and prayers today, tomorrow and always. May peace be yours as you honor Benji and may you feel the love of this community and let it support you and bring you strength. God bless you and keep you all.

    Eileen O’Fallon

  29. This Saturday, not having read your blog that evening I was out on Captiva collecting shells with Wyatt, Benji’s classmate, & my daughter and husband. My daughter came up to me and handed me a penny she found face up. What are the odds finding a penny on Captiva beach? There is a major history behind this penny……my sister’s husband Peter Fry, died in the second tower in September 11th. My sister sought help for her grieving in every way, shape, and form. She spoke to a couple of people who have spiritual connections and one told her that Peter delivers pennies to us as a form of communication (& I kid you not pennies have showed up at the most important times and in the oddest of places!)and the other told her that Peter is also a greeter to souls who have recently passed. When my daughter delivered the penny to me I prayed to Peter and asked that when Benji’s soul arrives to greet him with open arms. Little did I know that Benji had passed that very same day. I found comfort knowing that Peter was there to greet him. Peter was an exceptional man. Benji is in really, really good company.

    Lastly, your pain….it does not go away. You do not heal from your loss,; you scar and because of those scars you will never forget.

  30. I’m a childhood cancer survivor, a breast cancer survivor and a mother to three. I’ve never experienced the grief and admiration that I’ve felt for your family in the past few days. So much peace coming your way. ❤️

  31. Your name comes up frequently in our many common circles. Every single time with love and compassion for your family. Just know there is so much love for you all out here. So many hearts wanting to ease your ache-

  32. I am incredibly sorry for you all. I only recently started reading your blog through a mutual friend. You have shared a huge gift and the way you write and the way you share stories of this journey is amazing. You have touched me and inspired me to be more grateful, hugs my kids harder, and stop to see the beauty they bring. Prayers for you all for the days ahead.

  33. You’re words have carried me through many hard days and nights. I cannot imagine the waves of emotions that are washing over you. Please know that your bravery boy has touched and inspired thousands. Sending you all the love and prayers in thie world. Fly high, Benjamin.

  34. Dearest Laura,
    I keep thinking of that imbylical cord you shared with Benji and it will forever be connected to him – you and he will always be intertwined in the love that was created by his birth and his being in your life. I can’t imagine the feelings that must envelop you and I pray that beyond the thinking mind you feel love and tenderness. You are so very brave. I am so so very sorry that you are experiencing the most unimaginable of unimaginables. It is still hard to believe. We are here for you when you need us to listen, hug, cry , scream or whatever you may need. We are here for Banyan . Sending love to you all .

  35. Sending you love. We are with you. We cannot possibly fathom the grief, but we are humbled by the fact that you must endure it and are doing so in such a noble way. I will pray that you will not forget the sounds, the smells, the images. God grant you at least that, at least that. Big hug.

  36. Thank you for sharing your journey and for giving words to those of us that couldn’t express it as beautifully as you have. God Bless. There are no words anyone can tell you that will easy your pain. If you lose a parent you are an orphan, if you lose a spouse you are a widower, if you lose a child there isn’t a word for it in any language. God Bless and hoping time does heal.

  37. I keep looking back at this picture…
    That is A LOT of beads! It still really doesn’t show the incredible amount of courage, bravery and ‘Awe-mazing’ super-powers of Benji the Brave. In Awe… at all of the Gilkey family.
    Much love from all of us.

  38. So far, (3 years out) it doesn’t hurt any less, but it hurts like that less often, and now I know I can survive the pain, that I’ll get through it and things will be ok again for a while. So much love to you and your family. I’m glad you have so many people by your side for this. They say one day at a time, well I say one breath at a time. One breath in, one breath out. Just keep breathing.

  39. Condolences. Thank you for sharing your love and loss, it is helpful to others going through similar experiences. May tomorrow bring new beginnings for you and be peaceful.

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