By August 11, 2017Food For Thought

How do you communicate something when words seem so inept and inappropriate? This is today’s conundrum, just added to the long list of how’s and why’s that have accumulated over the past few weeks. I want to talk about this – or feel like I NEED to talk about this – but it’s so impossible to express.

3-year-old Joey, a sweet little friend who we love so very much, is living out his last days. He’s been sick for a long time, and we’ve known these final days would come eventually, but knowing doesn’t prepare you for it. His parents, Sam and Sara, are dear friends of ours. They’re living a nightmare I can’t comprehend, and their story belongs to them. All I can do is share what belongs to me, how Joey’s journey is changing me and devastating me and healing me at every turn.

When I wrote about our infertility journey a few months ago, I mentioned how much I wished I could write a beautiful, more complete story. It’s like writing a biography that ends abruptly in the middle, with no satisfying ending. But that’s so often how life feels, and I think probably never more so than when you’re watching and waiting for a loved one to die.

Scott & I have front row seats to this painful limbo, and we feel it, too. We show up, we do what we can, we talk or cry or laugh or sit there in silence. We eat, we cuddle Joey, we play with David, we sit and wait with them. It’s not enough, and it doesn’t change anything. Most moments I’m not sure if my help actually helps. Sam & Sara have an incredibly amazing network of support – family members who’ve already given so much and continue to offer everything they can at every turn; friends who’d drop anything at a moment’s notice and be there for them any time of day or night; doctors and nurses and caregivers who come to the house to visit, check up on Joey & hold him; the list goes on – and I know we all share in that feeling of helplessness. We wish we could make it better, ease their pain, change the facts. But we can’t, so we keep doing what we can. We don’t always get the satisfaction or luxury of knowing we’ve helped, but we keep doing what we can.

I’ve stopped at about every third word typed so far, tempted to erase everything, wondering why I’d even dare to write about something as unknown and awful and sensitive as this. How can I talk about my piece of Joey’s story when Sam & Sara’s piece is excruciating beyond anything I can comprehend? Who am I to have any clue about what’s happening here? And I guess the truth is, I don’t have a clue…and my pain is nothing compared to theirs…and I have no idea what they’re going through, what Joey’s going through. That’s true. All I do know is what Joey’s life is doing to my life – what I’m experiencing. The countless gifts that Joey’s given to me (and keeps giving to me, with each next tenacious breath he takes). So all I can do is share some of these gifts, in no particular order, completely jumbled and imperfectly conveyed by my weary mind:

  1. The gift of surrender: My desire/need for control is pretty vast, and that sense of relief I get from organization and categorization is how I cope with crappy life stuff. But there’s no way to mentally organize what I’m experiencing right now, there are no boxes to put things in, and I can’t explain away the chaos I feel in my mind. I also can’t control anyone else’s grief journey, can’t make them feel better, can’t encourage them with words. In this out-of-control state of helplessness, I can either try to run away from everything, or I can let go, keep putting one foot in front of the other, and continue offering my heart and love and life with no clue what might happen and no control over the outcome. One look in Joey’s eyes reminds me that it’s not even a question – I’d do anything for him, and if that means letting go and surrendering, that’s all I want to do.


  1. The gift of love: This is where there really aren’t words, since I’m discovering I really don’t know how love works. I feel it, I see it everywhere, I know it’s in my heart for Joey, but I can’t explain it. And when it comes to the love Scott and I share, I especially can’t explain how loving Joey and letting him into our hearts and lives has so affected our marriage and our hearts for each other. Watching my sweet husband walk willingly into grief with his friends, feeling his support at every turn, seeing him hold this dear little boy and weep over him, knowing that his heart is there right next to mine in every impossible moment…these are some of the sweetest and richest things I’ve ever experienced. Scott doesn’t have to do any of this, but it’s how he’s choosing to live his life. That this man and his convictions and his amazingly big heart are mine…there truly are no words to describe my love and admiration and gratitude. Joey’s little life is highlighting and deepening and enriching and healing and strengthening both of us, individually and together. And my heart feels bigger every day – like it’s being stretched and grown to hold all of the increasing love as well as all of the countless tears.


  1. The gift of Jesus’s healing: Like most people, I pray more when I’m desperate…and desperation doesn’t begin to describe how I feel most days lately. So I pray for strength, I pray for comfort, I pray for this season to mercifully end while at the same time praying for healing. And I pray most of these things by just uttering the words “help me Jesus” over and over. And He keeps answering in His big, mysterious ways. A dear friend recently made an observation that I can’t keep out of my head…that Joey’s life has inspired countless prayers for healing, and healing IS happening – but it’s happening in all of us. I like to imagine how it’s all happening…someone prays for Joey’s healing, and Jesus answers the prayer, holding out wholeness and healing to Joey…and Joey, with his sweet and pure heart, takes it on our behalf and offers it back to us. And it keeps happening over and over and over again, some of us accept the gift of healing from Jesus and Joey, some of us aren’t aware of it, some of us don’t want it because it’s too painful or life is too crazy or we don’t understand it. And I may not really know exactly what’s going on with our prayers, and how this all works, but the thing is, the healing is real. Whatever’s actually happening in the spaces and realms that surround this little warrior’s life, there’s life and wholeness and healing floating around everywhere – mixed in with all the tears and the pain and the heartache – and it’s real.


This hurts like hell. Every day I wish that Joey’s body wasn’t failing him. It kills me when I think of the pain my dear friends are walking through. And every day countless people call or text asking if there’s anything they can do, how can they help, etc. – and we’re all faced with the helplessness and the not-knowing and the pain and the wishing we could make it all better.

I’m writing this right now because I can’t deny how Joey’s life has affected mine…and part of that is a choice that I made to let him in, to let his little life affect me. A choice to see him, to care about him, to let the painful reality of his disease be painful to me. And then a choice to surrender, to realize that I can’t control any of this, and that the more I try to control the less good I’m doing, a choice to let go of anything and everything that isn’t needed. A choice to love, to let love into my life, to recognize love even when it’s clouded by grief, to love like crazy and keep loving like crazy. And a choice to believe – a choice to look up and see the healing and wholeness that’s right in front of me, for me, a gift from Jesus, delivered by little Jojo Bear.

Oh, and one more thing – can we make a deal with each other? If I type out these words, cry these tears, and keep choosing to let Joey affect my life and my heart, will you take a moment and ask yourself or ask Jesus if there’s a gift in all of this for you? Because I really think there is. (It’s okay if you’ve already discovered a million gifts from Jojo, I have a feeling there’s still more for you.) Even if it’s something you don’t know you need yet. I’ve discovered and received so much that I wasn’t expecting from Joey’s amazing life, and if there’s even one gift in Joey’s story for you, I pray you won’t miss it.


  • Cheryl guminey says:

    I have so many things I want to say, but I can’t get them out. I am sorry for this journey you are on, but for whatever reason you are on it. I will pray for Joey and his parents. I was lucky, my son
    Miraculously lived. I watched as he slipped away month after month. I can tell you, you are brave and loving much more then any friendship between two friends. God bless you Susie.
    Sorry if this is a jumbled mess of words, it’s such an emotional topic.

  • Celena says:

    So honest and raw. Love this and YOU!

  • Tony says:

    Words are hard to find. Thank you for finding love, acceptance and gifts in this and these beautiful words.

  • Odet Ortiz says:

    This is beautiful and I am grateful you choose to write about this precious gift Joey! Sounds like an amazing little boy!! Prayers for his parents and you all!! Xoxo

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