How Are We Now?

Another Friday the 13th. Is it truly possible that it has been a month? It seems so long ago sometimes and sometimes it seems like yesterday. Then there are brief interludes of fantasy when I dream it never happened and life is normal. My rational brain won’t allow those glorious moments to last nearly long enough.

The last Friday the 13th – the bad one. I carried her. I had carried her frail body so often over the past ten months, it seemed natural. Only this time, she didn’t wrap her arms around my neck or tell me where to go. This time, our destination wasn’t the couch or the kitchen table. On that dark evening, I carried her to the Hearse waiting in my driveway. I did it because I didn’t want anyone to see her loaded onto a stretcher inside my house. How could we ever recover from that sight?

It was the longest walk I’ve ever made.

The visitation and funeral are a blur. Pictures and video tell me they happened. I remember seeing so many friends. There were times I was almost happy except for the specter of grief that always pulled me back into its dark bosom. We spent another ten days with very little activity and a great many tissues. The void created by the passing of a relatively small child is disproportionately large.

So how are we doing?

I asked Robin that very question and was given what I thought was an incredibly simple yet insightful answer.

“Everything feels wrong, all the time.”

Wrong. Off. Askew. Like staying together in a hotel where a home used to be. Wrong like when I had to drive my truck after it had been broken into a few years ago. Wrong. Stolen from. Unsettled.

Yes, we have played games, shared laughs, and had fun, but everything always settles back into this amissness. The tears come and go. None of us try to force an end to them, we just huddle and wait them out. Nothing specific triggers them – just a Kylie-sized hole.

Sleep is a game that Robin and I play differently. She can’t find it, I can’t keep it. So she stays up and reads or hangs out with our night-owl teens until she gets exhausted. I fall out at my usual time. But when my eyes open at 3 or 4 am, I am awake for the day. As time has moved on, the rules of the game have relaxed for both of us. She gets to bed sooner and I rise later. Still not normal, but better.

We have thought about getting away for a weekend, just the two of us. Maybe it would be good to reconnect. Funny thing is, we’ve been connected throughout this horrible experience. We’ve been on the same page the entire time and are hesitant to give up a moment with the girls. Jenna is nearing the end of her freshman year and from experience we know that the rest of high school will fly by. Kendall will be a senior next year – we will be empty-nesters soon enough. Then she will have nothing but my mug to look at and my guess is that she will feel way too connected with me. I know, it’s only a weekend, but we’ve learned just how precious a few hours can be.

If I haven’t said it enough, my wife is incredible. She gets out of bed every day and pours love over the four of us. Taking care of her girls is what gets her up and she is laser-focused. After a year of being somewhat on their own, they are over-loved, over-conversed, and over-mothered right now. They might not admit it, but I think they are enjoying it. Robin gets out of the house a little now – not a ton, but more. She doesn’t like long trips or long visits. Short is good, short doesn’t require a lot of preparation or conversation.

For me, I have loved seeing pictures and videos of Kylie from before cancer came to stay. I don’t want to forget the past year, we had some great times of joy amidst the suffering. I would, however like to minimize the final couple of days. I feel the shift happening, but not nearly fast enough. As a father, my principle job is to protect. While my head knows cancer was out of my control, my paternal instinct at times whispers accusations.

I still lack focus. Things seem to happen around me and sometimes I can almost detach from a conversation and watch myself participating in life like an eerie third party. It is so weird. A year ago, I prided myself in being able to keep a dozen balls in the air without dropping any. My first few days back to work I dropped everything like an amateur juggler. I might be up to four now.

So, how are we?

It’s still a pretty dumb question. We are parents living in the aftermath of the loss of their daughter. We are about as good as you’d expect. We miss her every minute.

Still, we have hope and faith that we will see her again.

We have each other, and we have you friends who have read this far.

If you want an honest answer, we aren’t doing well but we are better than we were a week ago and certainly better than the last Friday, the 13th.

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I am not sure how, but I think we’re going to make it.

 

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78 thoughts on “How Are We Now?

  1. I pray for your family everyday. As a Christian your faith amazes me. As a hospice nurse, when I read about you carrying Kylie out after she passed away made me sob. So often that is when I tell the family I will remain with their loved one so they don’t have to see them taken out. It can be such a horrible picture to remember. I cannot imagine how much strength that took. Again I promise you I will fight to bring better treatment and awareness to all cancer for people of all ages. All to often people don’t want to think about childhood cancer or even read about it or see their pictures. It is too hard, I hear. I say imagine how the family must feel. Her smile will live on forever, but I know there will be days it is so hard to find. God bless your entire family and your transparency to the world as Kylie and your family walked through this HORRIFIC disease called cancer.

    1. My whole heart goes out for your family. I found your posts through a friend on FB about a week before Kylie’s passing. And since this time, I’ve wept and prayed for all of you. When I read your updates, I can’t help but wonder at the mystery of God’s great depths of compassion. I’m just a stranger to to you. Yet, I’ve been filled with compassion and tenderness for your family when I read about your staggering loss. I’m terribly flawed and yet if I can feel this way, how much more does God (who is perfect) feel concerning you. My prayer is your family would be wrapped up tight in God’s loving comfort and peace. Blessings to your sweet family.

  2. Thank you so much for sharing and for reminding us to pray for you all. Healing takes time and Kylie’s death was a great loss. You are precious and your gift of expression is rare and valuable. It is a blessing.

  3. Please know that many people are still praying for you and will continue to do so. Please know the amazing light Kylie continues to give. Just let night I dropped in to a small party to purchase jewelry. A stranger came up to me and during our short discussion , she discovered that I’m an artist and ask to see some of my work. Therefore I pulled out my cell phone and began to go through the gallery of my photos. She spied a photo I saved of Kylie. That start a conversation of how much she loved Kylie and I told her how I know your sweet family since Norcross First Baptist days. The next stranger who came up said she too had been praying diligently for Kylie and for you all.. and how much amazing Kylie was… And the spurring it gives her to pray for an end to childhood cancer. We have not forgotten.

  4. I appreciate the honesty. So often, I hear things that really just sound untrue…wishful thinking, maybe, versus reality. You are a great writer and should write a book about Kylie and your experiences. Thank you for sharing your family with everyone. My prayers are still with you guys.

  5. Dear Kylie!s family, I only learned of Kylie and your family after she left this earth. My sister had been following her journey and when I went to visit, she showed me her FB page, Smiley for Kylie and I witnessed the eulogy you spoke at the funeral Dad…We all cried as you shared about who Kylie was, and is, and will always be! I quickly liked the FB page to get your updates to see how I can help with whatever mission your family goes on to raise funds for childhood cancer. Reading this update today evoked such sorrow for your family, for this huge hole in each of your hearts and I cried as I would move on in the post…nothing is easy in this space of time you are in; how can it be? 😩 I lost a brother 34 years ago and it was a very rough adjustment for me and my family for quite some time. One thing I learned about grief is that one needs to allow the tears to flow when you feel the onset of them and not run away to compose yourself or to avoid others by isolating yourself. I was told from someone counseling me in grief therapy that God gave us tears for a reason…and I realized after that statement that it helped me better to understand that when I allowed myself to grieve the loss of my brother, it somehow brought him closer into my heart where I felt his presence. Another positive thing that helped me in the early days after he left us was wearing a shirt of his…I still have it after all these years. When my grandma died, my sister took her colored sweatshirts and made a beautiful square patch throw and gave it to me. When I wrap up in it, I feel her all over me. Kylie’s DNA is on everything in her room and everything she ever touched in your home; in many ways you are miraculously still touching a part of her every time your hand touches those things. God reminded me of that one morning very early at 4am as I couldn’t sleep, and I woke up to put a beaded necklace on that my Grandma had made decades prior and was now mine… I sat on my sofa to read my Bible and as I sighed and held the necklace and spoke out loud about how much I missed Grandma…and spoke directly to her when I said it; It was as if I heard an audible voice telling me Zi was touching her…it was then that I sensed God was reminding me that her DNA was still on that necklace… And in a sense I was in fact touching a part of Grandma. If you still have Kylie’s clothes, jeans, anything…working together as a family to design and make a Smiley for Kylie quilt would be an amazing way to not only allow yourselves the time you need to grieve; but it can give you a bonding time as a family sharing the laughter in speaking of all the ways she made an impact on your family as you design, cut, and see the quilt together. When my Daddy died, I took his denim jeans and our sons jeans and made a patchwork square quilt for each if them. Whatever you do , know that many are praying for you…and give yourselves the time you need to find your new normal ; it will be different for each one of you…and Kylie will ALWAYS be with you in your ❤️’s.

  6. My heart aches for you all!! Day after day I wonder!! I’ve followed Kylie’s page since Day 1 and am inspired by her smile,her strength and her faith!! As well as her parents!! I too,as a Mom have a 11 yr old son,Colton,who had Ewing’s!! Diag on Nov.27,2012 and endured intense chemo,radiation and numerous trips to ER with fever,complications and infections!! Was the worst 10 mths of our lives!! His last chemo was Sept.28,2013.Colton is NED after 15 mths and has his 18 mth scans on March 20th at Egelston!! He now has side effects:migraines,left ankle,hip and leg pain(left ankle is where his tumor was)memory loss,anger and emotional issues,etc.This life will never be NORMAL again!! He loves sports and can’t hardly run,play,slide,jump,climb.BUT he’s always smiling and never ceases to amaze me with his strength to push on!! Hoping we can one day meet you and your family!! When I saw you speaking at Kylie’s funeral on FB my heart just poured out to your family!! Your strength,your sense of humor and your love for your daughter was so inspiring!! GOD blesses us all in many ways and I know Kylie was smiling,singing,dancing and rejoicing over YOU and was so lucky to have YOU as her dad!! Sorry for being such a long post but needy you to know how you and Kylie have touched my heart!! GOD bless you all!! Praying always for your family!!

  7. I can’t pretend to know your grief, but I’ve seen your strength- from an outsiders perspective. You have come so far in such a short amount of time and your eyes are still open, you’re still breathing. Sometimes, that’s all you can manage, and that’s okay. I will continue to lift up your pain in the hopes that it will shrink only slightly so that you may breathe a little easier or sleep a little longer. God Bless you and your family, Mr. Mark. You are so very loved.

  8. I cannot pretend to know your grief, but I have seen your strength. You have been through so much in such a short amount of time and you have done it with grace and dignity. You have supported your wife and she has supported you, as it should be. Sometimes, all you can do is keep your eyes open and breathe because it hurts so much. And when those dark thoughts creep in, you do just that. It’s okay to be weak because our Savior is there to be strong for us. My friend has a phrase that I like, “I won’t give up on you even when you’ve given up on yourself.” He’s in the Army and its what the drill Sargents use to encourage them during basic. It’s how I like to see my relationship with God. We can fall so hard so fast and be devastated within minutes because our world, what we knew, has gone to shambles. And we may curse, be angry, mourn, grieve, and even turn from The Lord; but He will never give up on us. I hope you can take some comfort in this promise. You and your family are not forgotten in the eyes of the Savior and we (the Smiley for Kylie community) have not forgotten about you either. God Bless, Mr. Mark

  9. Your family is in my prayers. Nothing will ever take away the memories, but time will heal the hurting. My Dad would have been 67 yesterday, March 13th. He died at 46 at home of cancer as well. Hold tight to y’all’s faith because you will see her again. When each of y’all’s time comes, she will be there with open fully restored arms to welcome you home. That is the faith and peace that has been able to carry myself through 20+ years now.
    My roommate introduced me to the Smiley for Kylie page on FB the morning after she passed. She had the opportunity to meet Kylie because she works at Levine Cancer Institute in Charlotte. She told me was an amazing little girl she was. Incredibly brave and strong children like your daughter are the reason why I have gone back to school and hope to become a pediatric oncology nurse in the near future.

  10. I sit here and read this and I just agree. I have been following Kylie’s journey for a few months. In fact I started keeping track of many cancer kids right after my cousin was taken from us by leukemia. I get it, I understand. Most of my prayer time is asking God why. Why do the kids have to suffer? Why these particular families? Then I pray that the families left behind will continue to fight the good fight, we can end this beast together, and maybe that is God’s purpose right now. Just know that there are many praying for you right now, those who have been there before and those who are scared they will be joining you soon, and of course many many others.

  11. I couldn’t imagine what you are going thru & hope I never have to, but as a family, you are all beautiful, strong & loved by so many! Keep your faith & strength!!!!!

  12. I lost my husband to cancer. He was 45 and we have 3 young sons. I’m so sorry that you lost your daughter. The heartache of loss can truly only be understood by those who have lost as well. Thank you for your words. It’s hard for me to express mine.

  13. You will make it, one day, one hour, at a time, and you won’t know how you’ve made it. I think of your family all the time, as you begin this new, horrific, journey that none of us should be on. Be gentle & kind with yourselves, and know that your beautiful girl is with you always. Hugs and love. 💜

  14. I pray that God will strengthen you with each moment that passes.
    I have two children and I cannot begin to imagine what you are feeling. When my grandmother died of a cancerous brain tumor in 1997, I struggled to think of her without the vision of when she was sick, and specifically as she was dying. A church friend of mine shared her experience with me when she lost her mother to cancer. She said with time the bad memories would slowly fade, and that I would be left with good memories of my grandmother. I am thankful to say she was right. Although the heart wrenching memories of my grandmother’s failing health and the moment she left this Earth haven’t left my memory completely, now when I think of her, what floods my mind and heart are the happy times I spent with her, her laughter, and that, along with the fact that I know she is cancer free, and that she is in perfect peace with THE ONE who loves her more than anyone, that is what helps me when I miss her.

    May our almighty, merciful, loving God wrap you up so tenderly, yet sufficiently in His arms. May He grant you what you stand in need of.❤️

  15. No parent should ever have to carry their child to a waiting hearse. No parent should ever have to bury their child. But, you have all done these things with grace and hope and faith. I continue to pray for your family…and for all families who are suffering with cancer, especially those sweet children. I don’t know you; but I have followed Kylie’s journey. I so enjoyed opening facebook and seeing that huge, beautiful smile. May God continue to bless your family during this time of grief and pain and emptiness. May He fill the void with many beautiful, precious, sweet memories.

  16. My heart breaks for your family. I’ve cried many tears for your precious daughter. Yes, I only knew her through fb, but I quickly felt her spirit become a part of me.
    This amazing child and your incredible family have touched so many and continue to share your faith in God in a real and tangible way. I feel like I’m a part of your lives…part of your family.
    God bless you for keeping it real. That you are able to so eloquently express your heart and your feelings is, I believe, going to help with the slow process of healing. There will no doubt be scars, but I know you and your family will make it…together, as always, as it should be.
    You will be in my thoughts and prayers. Thank you for sharing your family. My life is richer and my heart is fuller because of Kylie. I’ll never see another smilie face without thinking of your family and sending up a prayer for you all.

  17. As I sat here reading your thoughts and pouring out your message for your trip of losing your precious daughter tears were streaming down my face. All I can really think is “PRAISE GOD FROM WHOM ALL BLESSINGS FLOW”. He is so good and I know He still has a plan for you and your family. Be still and know that He is with you all the way.

  18. Just wanted you to know that although you don’t know me, as I’m just one of the 7 billion people who walk on this planet with you, your precious Kylie has made an unforgettable impression on me and I will work for change on the distribution of funds for the horrific childhood cancer that she had to bravely fight. You and your family supported, embraced, loved, surrounded Kylie the best you could as she battled the disease, and her smile showed just how large her love was for you.
    I am truly sorry you and any parent has to endure watching your child suffer, as all you wanted was for it to have been you.
    I have no words to comfort you, but I pray for you, stand by you, think of you as you try to go on, support you and your cause and know that one day at the end of your life a beautiful girl with an exquisite smile will be the first to greet you.

      1. My heart is with you and your family. May God ease your pain and know that I am holding your hands and will do anything to help you and your family. Anything you need, I will try to make it happen. And in the middle of the night when you wake up and cry, know that you are not alone, I feel your pain and I get your outrage…it is not fair, it is a crime, it is a violation, it is despicable that we care so little for our youngest. It has to change..in Kylie’s honor. I will not forget her.

  19. My family and I pray for yours daily, that God will bring you comfort and strength! I hope as time passes your memories will bring more smiles than cries. I haven’t dealt with loss on this kind of scale, but I lost a good friend some years ago, and I decided I wouldn’t try to escape the pain of her loss but I would let it run its course. I didn’t want to push her from my mind just for the sake of not finding myself crying in public. I also pray that your story will bring more attention (and with it more funding) to pediatric cancer. God bless you guys!

  20. I continue to pray for you and your family. I can’t even begin to fathom the pain from your loss. Kylie’s smile was contagious and warmed my heart. I seriously lose my breathe when I think of your family’s loss. May God continue to give you and your family the strength to smile, the strength to rest and the strength to live. Kylie’s life and spirit will live on forever…she had the strength to even touch the hearts of strangers… Lots of love and prayers sent your way.

  21. Thank you Mark for being so super honest. I have just lost my Mom to cancer on Feb 23rd just 2 days before my 30th Birthday and now my Dad and me are alone. I know it’s far from being the same than losing a child, but your words have somehow given me comfort. I’m currently living in a world that doesn’t have much to do with reality. A part of my mind just won’t accept that she’s gone and keeps trying to convince me that she’ll be back. My mind works just like yours with the funeral. I remember seeing a lot of family friends we haven’t seen for years, but everything else is blurry.
    My Mom used to be a nurse at a Childrens Hospital and has shared many stories with me about the children there and how she always tried to get away from her boss and sneek into the hospital rooms to have some cuddle and spoiling time with the kids that had cancer. They were always her favorite kids because they somehow all had the best spirits and smiles despite their terrible disease. I think these stories that my Mom shared with me were the main reason why I’ve been trying for many years now to bring awareness about Childhood Cancer to whoever I can.

    I will always remember your precious Smiley Kylie. I’ve been following her story through TheTruth365 and she will always be a special little warrior to me. Sending you lots of love. My thoughts are with you and your beautiful family.

    1. Ah, Saskia, I’m sorry for your loss but I love the story of her sneaking up to cuddle patients. We need more nurses like that. Blessings to you and your father in this tough time.

    1. I’m sorry for your loss. I enjoyed your post. Enjoyed isn’t the right word, but it was truly meaningful to me. Blessings to you as we navigate these waters together.

  22. I feel like an intruder here – but while reading your words this morning – a thought came to my mind – God does not intend to break our hearts when he calls a soul home – that’s why Jesus promised specifically that those who mourn would be given comfort – I don’t think God wants us to ever be in pain – but Kylie’s passing is but an exit to heaven from a freeway that we all must continue on until he calls us home too – and it will be to the same place that he called Kylie too! God bless you and your family during this time! P.S. – please don’t let this break that connection you have with your wife – that is what God has given you!

  23. I have been following Smiley For Kylie for a few months now and it has changed my life. Kylie taught me to look on the bright side & always smile & to rely on God’s plan. I am continuously praying for your family. I know that Kylie is up in Heaven with my twin sister (who died shortly after we were born because we were preemies.) and I hope they are friends. ((Hugs))) and prayers.
    P.S. I am knitting a prayer shawl in honor of Kylie

  24. i have been thinking about all of you and wondering the very same thing. i think you have described this very well. slowly, but surely, life will return, it will be good, and yet somehow never the same, but you will have a good life never the less, having been made better people by having had kylie in your lives. hugs )

  25. I’ve tried not to comment on too many things. I make myself scarce in this community because I know I can talk to kendall elsewhere. But here, I try not to think about it but it comes up more then it used to. All I want to do is perminatly embrace my best friend and tell her that I love her. I mean I already have, we collapsed into each other after the memorial. It just doesn’t feel right. You’re definitely hitting the nail on the head with that, it all seems off. Certainly in my own way it can’t be like yall but driving past the grave almost daily I’ve find myself going 15 out of the way to skip it while other days I drive too slow as I pass. I offer my digital hugs, kendall knows I give those a lot, nd my real life prayers. I love yall.

  26. Your honesty brings some comfort to me as I walk the halls of the Levine Cancer Center trying to get my head around my fathers metastatic melanoma that just shouldn’t be. He’s the health nut in the family. The one supposedly blessed with good genes too. The one who never went in the sun. He’s the one we all thought would outlast us all. Now we are reminded that we are not in control. And that terrifies me…because my father doesn’t know the One who is in control . I’m praying dad does come to know Him because I KNOW who is in control. Please pray for my father…Frank Barnes! Thank you.

    1. God bless you, Frank Barnes, and all of your precious family. I am just a reader on this page, but your story touched me. I am praying for you.

  27. Dearest Mark and Myers family,
    Your beautiful words, Mark – I am so sorry that your eloquence must be spoken through the mists of such dreadful sorrow.
    I have known of and read of too many family tragedies where their precious child was horribly stolen from the family through the darkness and evil of cancer, leaving a trail of abject despair. No parent should have to carry his child out of the house like this. Oh, the misery of it. This heinous beast has to die. We simply have to slay this monster. I don’t know how but bunches of people have to make it their life’s mission, to find the cure, and in a most non-toxic way. I followed much of Kylie’s journey through The Truth 365 (such an amazing advocacy). I prayed for not this ending. Now I pray for your healing. I can tell you, from experience, that one of God’s amazing gifts to us is that He does carry us through this sickening biting pain some of us must endure, but somewhere along the way, He gradually releases us from it. We are not meant to suffer eternally; we instead somehow learn to live with the pain so it isn’t quite so painful anymore. I am so deeply sorry that this pain is your life right now; nothing could ever hurt worse. I pray that you will find your solace, and rekindle your joy, and once again find your life as it is meant to be – blissful in your memories of precious Kylie, and in your love of each other. My deepest condolences. Godspeed to you all.

  28. Thanks for your honesty. I read this through tears. I would never ask such a stupid question. It usually means you want a quick noncommittal answer so you can move on. Besides how would you expect someone to feel who has lost a piece of their heart. Nothing will ever be the same. It is finding that path forward which best suits you, and no one can force that. Kylie had such a wonderful smile and it really shined through the day she got that kitty.

  29. Thank you Mark for sharing your journey with Kylie and your beautiful family. You have such a way with words that allows each of us to try and understand all you have endured. You and your family are in our thoughts and prayers everyday. I, as a mother of a child who fought cancer 4 times, have an immense appreciation for all you are doing to help create more awareness for this dreadful disease which takes too many, too young. Kylie’s faith and spirit live on through all of you and all those lives she has touched. Take care.

  30. He holds you all in his right hand…you will make it. It will take who knows how long but you will because I have faith you will. Life will never ever be the same but it will be what it will be. You have your family and Kylie’s little kitty to hold on to in those moments when you need support. Hugs

  31. Being a mother of 3, I have no idea how a parent can go through what you and your family has gone through. Your daughter had such an infectious smile, and I cried my eyes out listening to her sing ” A Whole New World” laying in bed. It was always one of my favorite Disney songs growing up. Now, it has such New meaning to it. I pray that you find comfort knowing that many people are praying for you. Kylie really impacted my life, and I thank you for sharing her with all of us. God Bless You and your family.

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