Sickness Like a Highway

by Amber C Haines

Sickness Highway

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I somehow thought taking Titus along to his appointments at Mayo would leave me primed for words. My intentions were grand, and I really did lean into scenes like poetry was about to happen, but every intention turned into my back flat on a bed. After days of running in boots for miles through skywalk and subway, I could feel my heart beating in my stomach and my knees. Even still Minnesota and Mayo Clinic treated us well.

Titus was a rowdy bounce of a kid who had no idea he was supposed to be sick. He would sing to the 16th floor:  ”Mina Sota. Mina Sota. Mina Sota,” and he would climb into my lap as we spent hours in waiting rooms. Repeatedly, he would stand on my knees, hold my hands and then fall straight back laughing. Will you catch me or not, Mama? He laughs even as I go wild eyed. He knows I will always run to him.  He only slows down when they take his blood. These are the crazy things. When you don’t know how you’ll walk another mile, you say thank you that we’re walking and we don’t know how. Turn another corner. It’s a miracle.

Once in a room of hundreds of mothers, the run-downedness, the worried hands of brothers, and daddies with messy-headed teenage daughters curled into their laps, I looked up and whispered “I’m sorry” to the sky as Titus restlessly acted like he might kick himself out of his own body for how exhausted he was. Even though the other kids were loud, all the parents heard me like I said it straight to each. One daddy peeked out from his glasses and said, “It sounds like home. Don’t worry.” There was a knowing among mothers. Sickness completely ignores cultural boundaries. It doesn’t care about your color, status, or numbers.

So what we do is take sickness like a highway to each other. We walk thereon and connect like siblings.

At Mayo, the knowledge streamed in me: God is everywhere, and He loves all his people, has pressed Himself into us all. Dare I say that His image ministered to me in repeated surprise.

Twice at the Ronald McDonald House (where we stayed the second week) I assumed that two small children were toddlers when they both actually had a rare form of dwarfism. One mother with gorgeous eyes must have been around my age, but she seemed so young. Of her skin, you could see only the face and the hands, busy in the kitchen with her father. Their food was to be halal so when others gathered at the gift of youth-group casseroles, this small family ate together upstairs in a separate kitchen. The young woman’s daughter was born with many malformations, more than I could note.

I had first seen this family when we learned about the gorgeous labrador that visits as a therapy dog. Children would schedule their chemotherapy around that big ol’ dog.  Titus loved it and of course never noticed the differences between children, the tubes or wheels or shallow breath. It almost wrecked me to see the little ones in pain, and even worse to see the parents suffer in the wait. It was enough to send me running out of the room, but how could I be so ridiculous in the face of such bravery. We all laughed together instead. We touched arms. We helped the children pose with the dog. We mothers would lock eyes and say more things than a mouth could ever murmur.

This family was the different one, because of religion and land and language, but I’m not sure I’ll ever witness such kindness the way I did in that house. Even in significant difference, respect was thick. The small girl’s grandfather was handsome, head down, kind eyes always pointed away from mine, full of patriarchal pride and an active purpose.

I planned to only interact with him in passing smiles toward the floor, but the community kitchen required a certain dance to get into cabinets and drawers. The mother and I tried to speak, but it was broken. Of course Titus was completely unaware of the tongue or the shape of bones. He only knew that this little girl was what she really was, a little girl. He would go to her and talk and talk.

One evening after dinner, Titus had been blabbing to her and wanted to go play, so I looked at her and asked, “Do you want to go play with Titus?” She flung her head back with an eye roll, and her grandfather pointed a finger and told her sternly to go play. I didn’t understand the words, but I knew exactly what had happened. As she walked away I asked him, “How old is she?” He told me then that she is 12, and I let it be.

It wasn’t until the next day that I couldn’t stand myself for assuming she was a toddler. I was sweeping and looking at the pile of dirt, and I asked for his pardon. He stopped and turned his body straight toward me with such soft approach. He opened his hands to me, and said that the doctors say she is small in her mind. He told me many things that the doctors had said. I told him that there was something about her that was actually very twelve to me, and it made him smile. He called her smart.

For a moment, we stood at the broom. I asked for his forgiveness, and he asked for my ear. We exchanged gentleness. The air between was peace.

Do we not all stand on common ground of one kind or another?  Is there not a pile of dirt to gather beneath all our feet?


28 Responses to “Sickness Like a Highway”

  1. Leigh Kramer January 6, 2014 at 7:38 am #

    Oh, Amber. This brought tears to my eyes. The scenes you’ve painted, the insights you’ve shared. Such grace. It’s so good to read your words again. Love you so much, dear friend.

  2. Brandee Shafer January 6, 2014 at 8:12 am #

    Thank you for blessing wherever, however, the roads leads. Thank you for being big and small enough to say sorry. Thank you for telling it.

  3. Danielle Smith January 6, 2014 at 8:17 am #

    Always with such grace and beauty my friend. Your words are like a painting… I can always stand in front, but find myself lost inside. I have watched your journey from a distance, but have kept you and your sweet family in my heart and prayers. I will continue to send love your way. xoxo

  4. Marina Bromley January 6, 2014 at 8:29 am #

    Oh Amber…how beautiful! I hate that you’re having to walk this road..blessed how your hands and feet bring Good News into places in a new way. May you feel His presence daily; drink from His well deeply.

  5. Lori Harris January 6, 2014 at 8:39 am #

    Oh girl, your words break me up with morning.
    So love your heart and the way you tell the story of Christ and the story of man and how they intermingle.
    Always praying.

  6. Erika Morrison January 6, 2014 at 9:13 am #

    Your words bring me back to a time long ago when we lived on the pediatric floor at Yale-New Haven hospital for a week with our son, Seth. I know what you say here, exactly so and it changes a person real good. Common ground and dirt piles indeed…

    I love you.

  7. Lynn Morrissey January 6, 2014 at 10:01 am #

    Amber, truly your words–your heartfelt, personally experienced, emotional words of trust, grief, compassion, and longing–are holy-ground words where we stand with you, heart-to-heart-to-tear-torn heart. I’ve personally stood on holy Mayo ground for myself. But to do it for a child, I think must surely be so much harder, so much holier. One thing I know is that when you experience suffering (and assuredly suffering through a child), it gives you a heart of compassion. We feel your compassion in reaching out to others, and we pray for Titus and ask for God’s blessing and healing on this precious boy of your body and heart. I can’t even begin to fathom the journey Titus, Seth, you, and all your boys have been on. Praying for love, grace, and healing.
    All my love,

  8. Becky Rouae January 6, 2014 at 10:24 am #

    This is so beautiful and touches my heart. Those of us who are blessed with healthy children have no idea of the stress, pain and courage one needs and actually has. I will mention your name and family when I say my prayers today.

  9. Sarah Bessey January 6, 2014 at 11:49 am #

    I’ve said it before and I’ll say it again: i love you how see the world and how you help me to see the world. Love you and that hurricane of a boy.

  10. Misty January 6, 2014 at 1:38 pm #

    You and all your boys have stayed in my prayers. Always so good to read your words.

  11. Elizabeth January 6, 2014 at 2:39 pm #

    Oh Amber. The journey, this child, thiese friends along the way, it all just tears me up. Rips my heart open. Sweet Titus and precious you. Thank you for taking us along on this difficult journey. Prayers friend.

  12. Cara Strickland January 7, 2014 at 1:09 am #

    Thank you for this, Amber.
    I’ll be here for a while.

  13. Kelley J Leigh January 7, 2014 at 7:45 am #

    Beautiful, Amber. Thank you for sharing poetry and vulnerability from such a deep place in your life.

  14. Tanya Marlow January 7, 2014 at 10:45 am #

    Two things about your writing – it always makes me cry, and it always makes me feel as if Jesus has visited.
    Thank you, Amber. Love you and your beautiful boy.

  15. Anita Mathias January 7, 2014 at 1:16 pm #

    Beautifully written. Yes, I guess illness is a great equaliser, like religious experience in a way.
    Have you seen “The Bucket List,” which plays with this idea?
    I hope Titus continues to mend.

  16. Kristen Strong January 7, 2014 at 2:43 pm #

    When you write, I hear music. Every. Single. Time.

    Much love and prayers to you and your gorgeous boy, friend. I love you.

  17. Jackie January 7, 2014 at 9:10 pm #

    Such beautiful haunting words that leave me in tears. This takes me back to days on that highway of sickness that still break my heart. Standing bedside by a little one who held my heart and knowing I had no hope of helping, much less saving…. just support for his mom and dad and prayers for miracles for him. Those same thoughts fill me now when I sit with parents whose little guys have survived but now struggle. We write plans for support as they enter services with our school system. Often while my head processes numbers and labels, my heart is focused on holding out hope to parents who desperately need some after long roads filled with fear. May I always remember the grace conveyed in your beautiful writing and always remember to walk in love with all those who find themselves on this highway none of us would choose. Saying a prayer for Titus, his medical team, and all who love and worry about him.

  18. Marcy January 8, 2014 at 7:48 am #

    I read this and can hardly breathe. Thank you for sharing your he*art.

  19. Lynette Oien January 8, 2014 at 8:26 am #

    Tears mingled with each word I read. I signed up for your blog because it was so honest. Thank you for sharing what is so personal and yet so universal..I asked my husband if he thought God gave us beautiful skies to cheer us up. Keep looking up. Keep walking. I will be looking for your next words. May God cover you in a blanket of peace. Lynette

  20. Shelly Miller January 8, 2014 at 8:44 am #

    Even in the midst of tremendous pain and suffering, you find God’s glory in the handle of a broom and the redemption of it all is quite beautiful. Glad to have you back Amber, you honor him well with your life and your word weaving. Praying for you all.

  21. Rachel Franklin January 8, 2014 at 1:14 pm #

    Me and my dust pile know about chronic sickness even now, and I thank you for writing out this memory. It always makes me feel less alone to read someone’s perspective on physical pain – and the victory of those housing His Spirit. Thank you, Amber.

  22. Paige January 12, 2014 at 3:49 pm #

    Thank you. Please sign me up for your blog.

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