Advice for Those Who Love a Family Facing a Childhood Diagnosis
One of my closest friends, Audra, planned on bringing us dinner and would be arriving any minute. I was deeply thankful for her care for us. She is one of the most loyal, genuine, and kind people I know. I’m not sure I’ve ever heard her say, “Let me know what I can do.” She just offers what seems like something we would need and makes it easy to say yes.
The Backstory
At this point in our story, we had six month old twins, and they both required different types of feeding tubes due to a swallowing disorder. My daughter, Hope, had an NG tube which was inserted through her nose and pushed into her stomach, which we could place ourselves at home. Our son Ransom, however, had an NJ tube which was inserted through his nose, passed through his stomach and emptied out into his intestines. A doctor surgically places this type of tube under an X-ray machine.
The first time a doctor placed this tube, he asked me to hold Ransom’s arms down while also pinning his legs down to the table with the weight of my body. Ransom screamed furiously, eyes watering, color changing. I couldn’t help but cry each time Ransom went through this surgery. It felt cruel. I hated that not only was this happening to him, but he was awake for it, and I was the one holding him down.
We did whatever it took to keep this feeding tube from moving to avoid this procedure. We taped his face and neck excessively, and we moved around the house with care to keep the tube in place. One morning we woke to his bare face and realized he had somehow pulled it out as he slept in his crib.
After a long day at the hospital, we finally returned home early that evening. I came into the house, greeted the rest of my family, and placed Ransom in a walker toy so he could sit upright for a while. I connected his new tube to his feeding pump resting on an IV pole nearby. I stood just a few feet away as I explained to my husband, Nate, how the day went.
And Then It Happened…
It all felt a little like slow motion when my oldest son, Henderson, ran across the room pushing Ransom’s walker as he went. The feeding tube ripped out of Ransom’s body, still connected to the stationary IV pole. Both of us stood there in disbelief. We would have to go back to the emergency room for the second time in one day. Ransom was hurt. The doctors and nurses were going to hurt him all over again. He hadn’t had a full feeding all day. All of these thoughts were swirling through my head, and I felt dizzy from it all. We both instinctively and passionately yelled, “NO!”
This moment and the minutes that followed were, to date, the lowest point of our marriage. We found ourselves pacing the house, desperately trying to breathe deeply, and crying. Henderson, nearly three years old, stood there motionless, confused about why we were so upset.
I quickly texted my friend Audra and told her not to come. I didn’t want anyone to see us in this state.
The Friend Who Shows Up Anyway
A few moments later, Audra showed up anyway. I was embarrassed and relieved that she was there all at the same time. I didn’t want our lowest point to be seen, but we couldn’t function without help. The Lord sent her, and she faithfully obeyed.
We sat on the couch together as soon as Audra came in, and she began to pray. Our sobs softened and our breathing deepened. After sitting with us for a time, she asked if it would be helpful for her to hang out with Henderson and play with him while we calmed down. This was exactly what we all needed.
When I think about the Lord and how he arranged that someone would show up at our darkest hour, it moves me. He knew what would happen that night. He knew that a playful, innocent mistake from our two year old would cause us to crumble. He knew we wouldn’t have the words to pray or the ability to sit and play with our son. He knew. Before we even knew, he had sent someone to help us.
Audra was God’s mercy to us that night. I am so thankful she moved when she got the nudge to show up at our house. Another friend of ours met Nate in the emergency room and sat with him in the waiting room late into the night. What a gift!
I have learned so much from Audra and others who have loved us well these past few years. Dear friends and family have listened to me, prayed with me, brought meals, provided childcare, paid for a housecleaner, sent money to help cover medical bills, and more!
Practical Advice I’ve Learned From Being Loved Well
Pray with and for the family. I believe it when my friends and family say they are praying for us, but it is an extraordinary comfort to hear the actual words of their prayers.
Listen. When they talk about what is going on. You might not understand all the medical terminology (and that's ok), but a listening ear is precious. Resist the urge to give medical advice unless you are a medical professional and advice is asked for.
Hunt for ways to be helpful. Instead of saying, “Let me know if you need anything,” suggest things you think might be helpful. Don’t stop until you land on something you can do, however small it is.
Just show up. A few years back, Audra and I were a part of a summer reading group. We read the book Just Show Up, written by Kara Tippetts and Jill Lynn Buteyn. They write about what it looks like to truly help someone going through a difficult time. I am positive this book prepared Audra and myself to give and receive help. The reality of it is, as Jill Lynn Buteyn writes, “We might not feel qualified to show up. But God uses those of us who aren’t qualified so that He’s glorified.”
I'm fairly confident Audra felt awkward and unprepared for showing up at my house that night. She didn’t have an action plan or all the words prepared. She just showed up and allowed the Holy Spirit to minister to us. She listened, she prayed, she stayed for a while to help in practical ways.
I know the encouragement to “just show up” for each other in these particular days is strange. I would challenge you to show up in ways that are permissible. Show up on video chat, write a letter, deliver a meal to their doorstep, or go on a socially distanced walk around the block. There are still countless ways we can show up for each other even while we are encouraged not to come in close contact. We need one another now more now than ever. Who can you show up for today?
“Bear one another’s burdens, and so fulfill the law of Christ.”
Galatians 6:2
About the Author
Mary Brantley Meade lives in Atlanta, Georgia with her husband and three young children. Her background is early childhood education, and she most recently received a masters in counseling from Westminster Theological Seminary. When she’s not counseling or writing, you can find her enjoying the outdoors with her family.