“Mom, my back hurts,” my 11-year-old Anna complained. “Did anything happen to cause the pain?” I answered. “No,” she said. Time went on and things seemed to be fine again so I didn’t think twice about it. But then “my back hurts” started to become a regular complaint. Initially, I thought it was probably just growing pains, but because of the frequency, I could no longer ignore it. It was time to see the doctor.
I will never forget the moment the urologist told us Anna needed surgery. Just thinking about it takes me back to the emotion-filled room with the concerned look on the doctor’s face. “Anna has a blockage in her ureter causing chronic kidney pain,” he explained. Anna burst into tears, “I don’t want to have surgery.” I looked on helplessly as the tears began to spill from my eyes as well. This was going to be a hurt I couldn’t kiss and make better.
We were sent on to another surgeon at Children’s Hospital only to have it confirmed that surgery was indeed a necessity and soon. What was supposed to be an easy procedure with a 98-percent success rate turned into an eleven-year nightmare filled with complications, incredible debilitating chronic pain, and more surgeries. Unfortunately, that was only the physical toll. Emotionally, there have been years of depression, incredible grief due to school absences and loss of friends—and ultimately a lost childhood. While other kids were having fun and enjoying school activities and get-togethers, Anna was confined to her bed and couch. Inevitably, every time a plan was made for day-to-day stuff as well as holidays, they were interrupted with excruciating pain and trips to the hospital for more surgeries and months of recovery. My husband and I were constantly playing tag-team parenting. One of us always being home with Anna, the other one carrying on with the other kids. Medicine bottles overtook our kitchen counters along with legal pads just to keep track of the timing of when to take what when. I grew to resent the heating pad that soothed Anna’s pain because it became a constant symbol that I had a sick child. A pit in my stomach arrived every time she requested it.
Trying to get her well became a part-time job. We did everything…trips to specialists in different parts of the country for second opinions, more surgeries (seven in all) and hours of research, but nothing brought the healing we were desperately hoping and praying for. Instead, it was one disappointment after another. I experienced an exhaustion level I had never encountered before and constant, excruciating emotional pain as a mom watching a child continually go downhill despite all of our best efforts to help her find health again.
To say those years were taxing is an understatement. Most everything in our life was put on hold as our world became smaller and smaller evolving around a medical condition that not only left surgeons scratching their heads, labeling Anna an “enigma”, but began to overtake our lives. There were days, as Anna’s caregiver and medical advocate, that I didn’t think I could get out of bed and face one more day looking in the face of my suffering child—on most days I had to will myself to do it. Every look broke me to the core. It was a deep pain that consumed me after a while. To look into a child’s eyes every day and see the pain and pleading look for help, taxed me at times to the point of despair. It was only as I learned to keep my eyes on God and His bigger plan, that the despair stopped consuming me.
In his book, When Your Children Hurt, Dr. Charles Stanley said, “We can get up each morning and go on because we know that no matter how great the pain seems, He has a greater plan in mind for our sorrow. He promises to bring good out of even the worst circumstance. Therefore, we can get up every morning and continue. We must be willing to accept not only God’s healing and restoration but also His sovereignty, because many times, healing may not take place on a physical level. It may happen on a much greater scale and be a testimony to all who know you.”
Spiritually there were times that I cried out to God begging Him to do something—anything to relieve this suffering. I even begged Him to make me the sick one, not Anna. Instead, He often felt far away and removed from our pain. Those were probably some of the darkest times. It became a spiritual battle for me, wrestling with God and what I knew He was capable of when it comes to healing—and yet healing never came. I finally had to come to a place of surrender if I was going to live and survive in this place. I had to accept the reality that Anna might never get better, that this might be as good as it gets, and God had His reasons. I prayed, “Lord, even if Anna never gets better, I will trust in Your plan.”
“There are heartaches and disappointments God allows that we do not fully understand...Trials teach us to turn to Him. He uses other people in the medical profession in a tremendous way to diagnose our diseases, but far too often we look to them to be our saviors and have all the answers we need to our medical problems,” Dr. Stanley said. “There must be a balance where we seek God’s wisdom and guidance along with the advice of the medical professionals He has given us. The moment we admit our weakness and need for Him, God begins to move on our behalf by opening doors of hope. This may include physical healing, or it may mean giving us the courage and support we need to keep going forward.”
This journey has been one of the most difficult challenges we have ever experienced. Here are some things we have learned along the way to walk alongside our chronically-ill child and what to do as a caregiver to keep your sanity and focus on God.
Walk Through the Crisis Together
Together you can make it through one more test, one more surgery, and one more doctor visit. Together you walk through the pain, deal with the side effects from meds, and the recovery. Our children will be comforted by our presence. They need us—all of us in their family—even the dog!
We put Psalm 56:3, “When I Am Afraid, I Will Trust in You” on an index card for Anna to take with her into every surgery along with her favorite blanket, to remind her that the moment she leaves us and is rolled into surgery she is not alone. Children need to be reminded often that God is with them and will never leave their side.
Celebrate the Small Improvements
Take advantage of and celebrate the good days. Do something fun or just get out of the confines of home. Those celebrations can get you through the tough days. Even though Anna wasn’t feeling 100 percent, we decided to continue with our plans for a family vacation one summer. I saw a semblance of Anna’s old self return on that trip. Even though she still had to rest or just lay by the pool, it was important to change the scenery and focus on some fun. Especially, if your child has a long-term illness, we need to provide some normalcy in their lives. Chronic illness tempts you to isolate, which is the last thing they need. They need to be encouraged to do life one-step at a time with the energy they have today.
With a chronic illness, you can’t wait to enjoy life. Look for joy in between the doctors’ visits, heating pads, and procedures.
Remember it’s Okay to Have Bad Days
There are going to be times when your child is not going to feel great—and that’s okay. There will be many times when you won’t feel like celebrating. That doesn’t mean you’ve lost your faith. You’re just living in reality. We can be hanging on to God while still saying this hurts and is hard. While you can’t call the illness good, you can choose to look for God’s provisions in the midst of it. On the bad days, choose hope instead of despair.
Be Careful What You Promise
We can’t promise that our child will get better, even though we want to. This can lead to false hope. What we can promise is that we and God will walk with them through this and do everything we can to get them the best medical care possible.
Expect Emotional Challenges
Don’t be surprised if depression hits you both. One of the staff from the pain management clinic told us early on that Anna probably wouldn’t begin processing what happened to her until her late teens and early 20s, and that has been true. All of her energy and focus went into the physical issues she was dealing with. So while her kidney problems finally came to an end at 20, her depression was just beginning.
Find a Place to Pour Out Your Own Sorrow
This is hard stuff. You can’t always be strong. I had to find a circle of safe friends outside of my husband (you have to guard your marriage from becoming defined only by illness) where I could let down and be raw and real about the anguish in my heart and the challenges to my faith. Find a place to practice lament. Mine was in the shower where I let the water intermingle with my tears. You can’t carry all of the emotion and grief that comes with caring for someone who is chronically ill without finding a place to release it. I also walked most mornings where God reminded me that He was bigger than my problems and in control even though I didn’t feel it or see it at times.
Help Your Child Express Their Emotions
Give your child permission to feel their pain. I told Anna often it was okay to be angry and sad and to cry…encouraging her to feel her feelings. I encouraged her to keep a journal and to do something as basic as draw a mad face or sad face for the day, a face for whatever she was feeling as a way to get her feelings down, to let them out. Many children would rather write or draw their feelings than say them. Help your child interpret their pain and respond to it. We also cried together many times.
It’s okay to struggle—both as a parent and with your child. As you invite God into this journey, He’ll reveal His love and come alongside your whole family to face what comes. We have a God who suffered, so He understands our suffering—our every tear. And because of that, we can have hope. Second Corinthians 4:8-9 says, “We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”
Be Prepared To Be a Punching Bag
I’ve often been the recipient of Anna’s anger and grief. It can be a challenge when you are exhausted and doing everything possible to help your child get better, so don’t take it personally. Realize that for this season, you are the only safe place for your child. A child doesn’t have the ability to put language around their feelings. I had a hard time as an adult processing all that was happening, how can a child be expected to? That’s where daily grace is needed as your child pours out their emotional pain with irritability and often lashing out at you.
Work with the School
This was by far one of the most stressful pieces for us during the years of Anna’s illness. I felt like I had to work up the energy just to call the office to say that Anna would be missing another day, or to get that call midday telling me she would need to be picked up. The stress level was high for all of us. While most schools are very unprepared to deal with a chronically-ill student, you can arrange a meeting with the principal and the child’s teachers to sit down to map out a plan for how to best serve your child’s needs. To be all on the same page made it a little easier. Find at least one person who will be an advocate for your child so you’re not running around to everybody. We also relied on a school social worker who came to the house to help administer tests and help with homework. Had we known Anna was going to miss three years of school, we would have gone the on-line virtual school route to make things less stressful.
After meeting with a counselor because of all my stress, my anxieties were relaxed about Anna missing so much school. The counselor wisely said that in the scheme of things, missing chunks of school isn’t going to make a huge difference when you look at all of Anna’s life. Having her put things in perspective helped me rest in the reality that is was okay that Anna’s school experience would look different than other kids her age.
We have lived in the trenches of chronic illness for years. It’s a way of life for our family. And we can either resist it or welcome the things God is doing in each of us as a result. Thankfully, Anna is on her feet again and recently graduated from college. She is the epitome of resilience and courage—and she’s my hero. In fact, I think people walking day by day with the incredible challenges of chronic illness are some of the unnoticed unsung heroes of this world. Looking at her, no one could ever imagine the huge battles she’s had to fight just to get out of bed every morning, and it has taken incredible energy just to go on with life. With relentless determination and will—prayer, and a support system of loving people—she’s done it. With every setback, she’s learned to take hold of her life again and again. Chronic pain has shaped us all in ways nothing else could. And while her journey looks different from other kids her age, it is a journey God will not waste. Through it, He has given us all His heavenly kiss, making it better by drawing us closer to Himself, deepening our faith, not wasting the pain, and keeping our hope alive.
How Others Can Help
1. Take the initiative and don’t forget the caregiver and family.
Families battling chronic health issues don’t have the energy to ask for help. There were friends that just showed up with plates of cookies, meals, and practical helps. I’ll never forget one friend who baked Christmas cookies for our family in a year where I could barely muster up the energy to put up a tree. My kids had homemade cookies because of her gesture of love—one of our traditions that was going to otherwise fall to the wayside. I had another friend who called and said she was picking me up for a movie. I didn’t want to go, but she told me when she’d be by. It was just what I needed, a brief time to be away from the pressure to think about something else. To feel normal again.
2. Have your kids reach out to their sick friend.
Sadly, Anna’s friends abandoned her. I remember calling her best friend’s mother when she was hospitalized after her first surgery to give her an update and invite them for a visit. I was not prepared for her response to not visit. It felt like one more thing that was slipping away from Anna’s normal life. Eventually that friend disappeared. Continuing pain, especially in children, is something most people are uncomfortable with. Certainly, kids at this age can’t understand a sick friend, but this is where a parent can help. Help your child reach out by keeping in touch, sending a card, making a brief hospital visit, or regularly texting their friend. This can make a huge difference for healing on so many levels, especially emotionally. A child and family need to know that they are not forgotten.
3. Encouragement through the long haul.
Unfortunately, the average person’s commitment is only two weeks. The most helpful friends are those who continue caring. They remember you long past the initial diagnosis. Simple gestures like regular texts or emails, cards, presence, help at home, etc., can mean so much.
