It was 3:47am and the ceiling tiles were closing in on me. Honestly, I’m surprised it took so long. We were now on Day 16 since everything changed and I had spent all but four nights staring at those tiles. With each new room, hallway, and section of the hospital came more tiles. They were hard to miss. Some brightly shared the interests and passions of their pediatric painters. Some boldly shared a faith that gave them strength to endure. And then there were the hardest ones: those that marked a tribute to a precious child now in the arms of Jesus.
That night, it seemed as though every ceiling tile I had lain or walked beneath was desperate to tell its story. Regardless of the final outcome, each bore the scars of a child who should have been running at recess and picking flowers in a field, but was instead connected to cords in a hospital bed for weeks, months, or worse.
As I lay there thinking about the hundreds and thousands of mommas who had lain beneath these tiles, there was commotion from a new admission next door. After this long in the hospital, new admissions were old hat for us. But this one grew intense quickly. From what I could hear, she was probably 3 or 4 years old. Within seconds of being in the room, she was screaming and begging for mercy as nurses and doctors were trying to calm her. She kept pleading, “I am NOT happy,” and “Get me out of here.”
I had to agree with her. It was difficult to find happy in this place. In fact, it is one of the hardest places I’ve ever been (and I’ve been through some pretty hard places). I laid there listening to the screaming with visions of ceiling tiles dancing in my head and the tears became uncontrollable for all of those children who had been here before us… and their mommas.
There’s no doubt it’s awful to be the patient, but I had to wonder if it was worse for the mommas out there. Watching your baby suffer isn’t for the faint of heart. There really are no words to describe the emotions that well up when the nurses hold him down for the 4th try at an IV while he screams for you to help him. AND YET YOU CAN’T.
Even in the quiet moments when he sleeps, the vision of the tube haunts you as you remember his pleas for help. I’ve found that these moments have been some of the most difficult for me to find self control. It’s amazing how hard it is to remind yourself that the nurse is helping your child when he is screaming the opposite. There’s just something about someone hurting your baby that makes your momma bear flesh want to punch them in the face. (Fortunately, I’ve managed to restrain thus far, hehe.)
I laid there that night thinking about those ceiling tiles and wondering about the mommas (and daddies) behind all those precious ones. Where were they now? Had they survived it? Did they punch the lights out of a nurse? Did they throw themselves on the floor in a tantrum? Had they taken it out on their spouse, forever damaging their marriage? Did they have any hope, or would I find them unable to get out of bed most days?
My thoughts were interrupted by Luke’s whimper and slight turn so I could see his face. The glow on his face was precious and the peace of sleep warmed my heart. In that moment the trauma of tubes and missed IVs was faint and I remembered the flowers we had left on the counter in a frenzy to get back to the hospital. I thought about the friends who had washed my underwear and those who had delivered countless gluten free meals to the hospital (and yet even more to the kids at home). I thought about those who had come to just sit with me even when no one had any words to say.
I felt thankful. Thankful for the friends who had taken the other kids to activities, let the dogs out, sent gift cards, and prayed thousands of prayers. I even had an arsenal of friends who were doing everything possible to hold my business together while I laid here staring at the ceiling tiles. In that moment, I remembered God’s amazing provision for families in the wake of disaster: community.
I realized in that moment that the only way to survive something this hard is by having friends on each side holding up your arms in the battle… just like Moses had (Exodus 17). The truth is, God has provided what we need in the hard times: each other. We don’t have to resist punching nurses and erase visions of ceiling tiles on our own. Which brings me to the point of this post.
Do you have a community you can count on? Are there people in your life who would come to the hospital and pray over your baby at 6am before a massively dangerous surgery? Is there anyone to hold your hand, help your other kids, or wash your underwear?
Find a community for the storm
If the answer to any of those questions was NO, you’ve got a problem. The Bible promises that storms are going to come. We need to be ready. As a Christian, there’s no excuse not to have a community. Even if (like me) you live 10 hours away from your family, are divorced, employed, and still somewhat new in town.
Of course this isn’t a “how to get more gift cards the next time you’re down on your luck” kind of post. Please don’t miss my point. You (and I) need to be involved in a church body and possibly even other Christian communities on a regular basis, giving, serving and yes, letting others serve you because this is the way God designed it. This is how we can best do life in a fallen world. This is His provision for help.
If you don’t have this community today, it’s time to get proactive. Find a church. Keep “shopping” until you do. (I don’t buy the excuse of not being able to find one.) If you don’t believe those around you in the pews will pick up and do something if your life falls apart, YOU ARE IN THE WRONG CHURCH. There’s another one around the corner.
But also, it’s important to note that you have a responsibility for becoming a part of the community. Sitting in the back row once a week isn’t enough. You need to get involved in your church and become transparent enough with others to build relationships. If you don’t, people will never know what you need and you most likely won’t have the support God has for you. Truthfully, they may not ever even learn your name. Don’t wait for the church to serve you. Step out and get involved first. God will handle the rest.
Do your part in the community
We’ve talked about the first requirement of being involved, active, and transparent. But the second is even more important. Every single person in the community has got to be as giving as we are able. It’s the way God designed it. If we are willing to step out and be transparent enough to invest in others and let them invest in us, we will never find ourselves staring at ceiling tiles alone. Period.
Don’t wait until life seems perfect to start giving. Even if things are hard for you, the most healing thing you can do is reach out and help someone else. Don’t let the enemy debilitate you with your own situation. (To be honest, I prefer to focus on praying for and helping others when things are hard for me. Sure takes the extra stress off my own situation!)
And secondly, don’t let the enemy tell you that what you can give is not enough. We all have been uniquely gifted. Some of my friends were able to give large gift cards or cash. This was a tremendous blessing when everything was turned upside down overnight. But there were many other things we needed. Some friends have given countless hours in prayer (or sitting next to me saying nothing audible at all). Both of these particular helps have blessed us beyond my wildest imagination. Neither more than the other. Both very much needed.
Trust me, anything at all you can do for someone else (even when things aren’t hard), is a blessing to them. Don’t belittle it or neglect it on account of the enemy whispering, “It’s not enough.” Communities supporting one another in any way possible is not only a witness to the family involved, it’s a witness to everyone watching.
So today, stop what you are doing and help someone. Send them a note. Drop by some chocolate. Buy them a cleaning service. Anything. If they are facing something hard, DON’T ask them what they need because they probably don’t know. JUST DO SOMETHING. (And if you would like some simple and practical ideas, check out our Random Acts of Kindness bingo and our RACK Christmas printables. Both have tons of ideas for loving on someone else.)
**If you’d like to receive more frequent updates on Luke’s progress, read prayer requests and be encouraged by our journey, you may join this Facebook group. I will update there more frequently than posting here on the blog. Your support is a blessing to us. Thank you!
Praying for you all!
I will be glad and rejoice in your unfailing love, for you have seen my troubles, and you care about the anguish of my soul.”
(Psalm 31:7, NLT)
I’ve been there, in the hospital, watching those tiles. I’ve seen my son attached to wires and monitors, and so much medication that I didn’t know what to do. I’ve also seen my son die. He didn’t’ get to come home, or grow up. I’m so thankful for our community in that time. Thankful for the community of heart mommas that were also in the same spot as we were. Thankful for those that came to the hospital to just sit with us, those that took us out to dinner, those that came when he past away and loved on us in those last moments. I’m so thankful for our community of believers that loved on us in the days to come, that showed up at our house when we got home so we didn’t have to go into our house alone, those that brought meals everyday for a month afterwards, those that took our other son for playdate & let him spend time with them to get him out of the house, and those that still sit with us and cry. Our son has only been gone a few short weeks, but I am so thankful for our community & church. We would never have made it through as well as we did without them. Thanks for sharing this!
From one heart mom to another- HUGS!
Oh Lori, so hard. I’m thankful you had such great support. I’m praying for you and your family.
Continuing to lift you and your son and your family up in prayer daily. My husband actually read part of your last post as an example in his sermon on James last Sunday – giving you credit of course. (I had shared it with him because it touched my heart so.) It was a blessing and reminder to all who heard it how we are to be thankful for all things and trust the Good Father. I am so glad for all the people surrounding you all right now and for how God is providing for your every need. Thank you for being transparent and sharing this with the world. Praying for a full recovery and continued strength in the journey.
Aww. I’m so honored! Thank you so much for your prayers and support.
Hi Kim,
My granddaughter is going through cancer treatment for the second round. She had cancer the first time at 2 years old. She is now 5. We almost lost her last time. Our family has a community of support and it is still so very hard. God has truly blessed our son and daughter-in-law with a lot of help. We as the grandparents take care of our granddaughter, Hazel’s, 4 siblings 2 days a week when she is in the hospital and her other grandmother 2 days a week. One day a week a friend helps with the siblings. I still have 2 children I homeschool so this is no small task. Thank you for encouraging others to help those in need. I will be prayng for your whole family. I know how hard it is and thankful for God’s help.
I’ll be praying for your family. Such a hard journey, but yes, God provides!
Major Hugs! I don’t know what Dx sent y’all into the hospital, but I do remember the early days. My son (and I) have spent about a year and a half of his 6 years inpatient (so, not counting Dr appointments). The first 5.5 months were straight, in the NICU. We have seen the same things you have and so much more, good and bad.
We also had a HUGE community around us… The entire KLove community on the day he was born. I think that is a big reason he is here as the only surviving major heart condition Micropreeme in my state and one of (if not the) first to survive in the world with his condition.
Yes you absolutely need support, that is something we forget this many years in managing his health. I sometimes forget how shocking “Open Heart Surgery” is to the general public. We have developed a few systems and tricks to help and allow him more control over his health care. IVs for example: Nurse counts to 3 before sticking, then we sing the “ABC song” she has until the end of the song to get the needle in (plus a noobie is NEVER allowed to stick him, only the best or the PIC team). If they can’t get it by then (he is a VERY hard stick) then they have to take a break until he is ready to try again. This sometimes takes some convincing. Lidocaine or VICKS vapor rub applied before helps numb the skin. Some people have found that a buzzy (buzzyforshots.com) helps, but unfortunately it doesn’t work for him.
I joined your Facebook group, so I’ll read up more on what is up with y’all later. So until then, from one hospital mom to another- HUGS!
Thank you so much for sharing this with be. Hugs back at you!
YES !! I have NEVER read a post like this and I am so glad someone has the courage to say those things ! So so important. As a pastoral family who lost a child in 2015 and then had another one in the hospital for 38 days this year, we had a lot of help and love from our church family. But then I hear people complain that when their hard came, no one was there for them. Well, these people were never envolved in church life, came occasionnaly but left as soon as the service was over so no one had a chance to get to know them, never helped others or shared in small groups… how could anyone know ?… Living in community is both giving and receiving, sharing life together and praying for one another, not just sitting in the same worship hall a few times a year.
I’m thankful you have community and am prating for you as you walk this hard road.
Yes, we so need each other! You’ve definitely had a rough run, too. I’ll be praying for you as well!
Thank you for using God’s gift to help others. I juse read your three part story. We miscarried our first, firstborn needed three heart surgeries, and then my husband comes back from war and no longer wants to be a family. I tried like you, “fixing” myself so he would come back. And he did, a few times. Each time still not being faithful and leaving again. Until the last time when he chased me with a truck. Then God woke up my eyes and showed me I was good enough and I didn’t need a husband to make me or God happy. I can be a great mom and homeschool adequately, not alone, with God’s help and yes, the people He put in my path. It has taken me years to reach this point, true peace, true happiness. May God continue to give you strength and peace and please remember God says he will be a Father to the fatherless. Merry Christmas!
Yes and amen. Praying for you!
This post was so good. Thank you for sharing your story with us. You are encouraging others and spurring us on to be more like Jesus!
My heart is with you, Kim. I have been a prayer warrior for many Momma’s over the years going through the same thing Luke, you and your family are going through. I’m here if you need someone to listen and I’m here to pray for you all! PM me if you need me anytime day or night. Terri Adwell Dippel on Facebook. Sending much love and hugs
I sit here crying you’ve reminded me what is important.
My son as an adult had brain surgery and that was hard for me I can only imagine how hard it is for you with a young son.
Thank you for sharing and you and yours will be in my prayers.
Once your baby, always your baby right? I’ll be praying for you, too!
I love this precious post. Starring at ceiling tiles happens when your caring for aging parents too. I would add, the ability to put yourself in someone else’s shoes goes a long way in knowing how to serve them. Hugs and lots of prayer for you all.
That’s true and you do that so well, friend!
I sobbed as I read your post. My daughter and I just returned home from several weeks of ceiling tiles, tubes, bruised IV pricks. Our journey isn’t over yet either. She was badly burned and we continue daily wound treatment accompanied by ungodly screaming.
I don’t know what we would have done without community. You said it so well. You never know how badly you need that community until this type of a situation arises. I have been changed as well. I want to be available to give what I can to other mommas in need. Washed underwear is the biggest “little” blessing. Any of us can do that! Or just to sit. Hospitals can be very lonely.
I don’t know your situation, but I am praying for you and your sweet Luke!
Oh friend, such a difficult trial. I’ll be praying for you!
I just found your blog and will be praying for your son. I wanted to make note of you saying he was hurting with insertion of the IV. I have birthed six kids and only took one time getting an IV to tell me never again. I asked for a tiny shot of lidocaine with the other 5 (the lidocaine shot didn’t hurt at all) right over where the IV was to go in. I never felt the IVs. Some looked at me strange but other nurses were amazed. It’s the small things that help so much. Blessings and prayers.
Community is great and I wish I had one but, after 5 years of living here, I still have not one single friend. Yes, I tried for the first 18 months after we arrived. I was the one to ask others out, I asked them over to our home, and I called and communicated but to no avail. My husband and 5 of our 7 kids loved the church but me, well I just couldn’t find my niche, though I went almost every time the doors opened and offered to help here and there. Then it happened and it’s just gotten mych worse and I’m even lonlier.
January 2014 I traveled to California to see my spiritual-adopted mom and get away for a week. I had just started my first full-time job since marrying my hubby in 1988 and having 7 kids. My pain doctor had warned me a couple months before that at anytime my back could finally go out and I would probably be bedridden or at least in a wheelchair. I had major back surgery in 2007 but the outcome wasn’t what I hopef and my back, hips, and legs got worse over time. I was delaying the inevitable, surgery, because the last one took 2 years to get me back to somewhat normal. Then it happened. I woke up the day I was to fly out and crumpled to the floor in agony and my feet unable to hold me up. I wasn’t going home and it would be 3 months before I did return home after a cross country car ride because sitting on a plane for over 4 hours was out of the question.
I hoped that our church would help and this may be my way to finally get someone to come see and talk to me, but I was wrong. I tried going to church but as my doctor said sitting up is going to be the worst and after 10-15min I was in the foyer lying down on one of the couches trying to keep it together. My doctor said that I needed to stay in bed and only sit up an hour each day, if at all. Insurance denied my appeals for the surgery I need so I was looking at a long haul.
It’s been 3 1/2 years and surgery is still denied and I continue to remain bedridden at home. No one at church has come over at all and the very rare occasion that I can go to church offers me only stares and a couple how are you’s. It’s left a bad taste in my mouth and I wish so badly to move back to our home and church where I was loved, cared for, and accepted.
So, you can talk about community but you forget there are many of us that can’t go to church and don’t have that no matter how much we want it. We aren’t lazy or making excuses. We are the forgotten Church and the ones that need community more than anyone, yet it seems that no one really cares anout us and rather we shut up and go away.