Sometimes, we don’t know how to help.
We want to. Our hearts break. Hands and feet itching to provide relief. Especially when they are our families, maybe even more so when they are children, and their health hinges on seemingly invisible germs.
The immune system is your body’s army that fights disease. When any part is compromised, the risk of any infectious disease is higher. Children may be immunocompromised through medical treatments, like transplants or chemotherapy, but it could also be from auto-immune conditions and immune deficiencies.
My daughter was in hospital for 6 weeks before they found out what was going on in her little body. At 7 months old, she had been living a mostly healthy, normal life, until a viral illness caused a severe pneumonia, causing her admission to ICU, placed on a ventilator, escalating to the point we were told to prepare for the worst.
By the grace of God, she recovered from that pneumonia, yet the true culprit of her illness - a severe combined immune deficiency (SCIDS) - wasn’t discovered until weeks later during her slow recovery.
The deadly effect of immune deficiency is sobering. Unable to fight off ‘normal’ illness, like the common cold, the body succumbs to defeat easily without any form of defense, as there are missing or impaired pieces of the immune system. When it is detected early, through newborn screening, the life-threatening situations can be prevented through early treatment.
We recently met another family whose child has SCIDS. While it’s a blessing and privilege to share the testimonies of God’s grace through our hardships and suffering, it’s also a reminder of how challenging it is for families, friends and communities to know how to support them.
Parenting through this is hard. Supporting those parents can also be difficult, without having experienced what they are facing, and sometimes not even knowing how to pray. To help better understand their circumstances, I offer a few areas for prayer.
Pray about their fears.
As with many diagnoses, learning medical language, understanding the disease, the medications and the treatment is like spinning around in circles with your eyes closed, then, in the dizziness and nausea, attempt to make decisions and navigate daily life, while the world continues to spins around you.
Information overload. New routines. Emotional heartache.
Problems with the immune system come with copious amounts of ‘what-ifs’ which become overwhelming, even paralyzing at times. Every cough or runny nose could be an infection. There’s a constant observance for symptoms, complete with frequent temperature checks. This hypervigilance is necessary, but wearisome.
Other children are a plentiful source of germs, which impacts their socialization, and that of the rest of the family. We were excited to be discharged home after our daughter’s transplant, but we weren’t allowed to have visitors in our home for months. Then, the first time I attempted going with her to a church service, I was welcomed to the sound of another child’s persistent, wet cough… we turned around and went home.
We can’t protect our immunocompromised children from everything, even though we want to. Afraid they will get sick again, of what it will cost their small bodies, we turn our homes into sanitary bubbles, hoping it will be enough, learning to practice dependence on the One who holds the visible and the invisible in his hand.
Pray for the health of the family, protection against illness, strength to persevere through all the fears, and peace to guard their minds.
Pray for courage.
Medically fragile children make frequent visits to their doctor, the specialist and often the ER. No, it doesn’t make it any easier. At all.
Every white coat, yellow gown or masked face, triggers memories of the last time; the needles, the medicine and the outcome. Bringing them in isn’t a simple thing to negotiate. All of us as parents need grace, for ourselves, and for our children, but especially so when navigating health concerns.
Pray that these children will be filled with courage, when they are tired, weary and weak. That parents will continually be filled with patience and empathy. Ask the Lord to give them wisdom as they learn to cope with life and treatments, how to teach their children in the midst of chaos, and to model dependence on the Lord.
Pray for discernment
When your child has health issues, often the doctors and nurses are good at explaining the technical side, but what about all the questions they process in the meantime?
Why did this happen to me? What if I get sick? Why can’t I go see my friends?
Our daughter was only crawling when we went through this all, but there are many children on treatments who are older. How do you meet their questions and answer them, especially when you’re asking the same questions yourself?
Pray that these parents will discern well; that they will cling to the word of God tightly to meet their answers for life’s questions in their time of suffering and need. Pray that their church communities will surround them with encouragement and support.
Families with medically fragile children carry additional roles to that of a parent, providing medical care and therapy for their child, while potentially still working, caring for other children and meeting other needs in life.
While it’s not a journey we wish for, as suffering never is, we are given the opportunity to continue trusting the providence of God over our circumstances, that he is doing something good for his glory through it all.
I remember feeling utter exhaustion, with no words left to pray, yet as life continued on, I knew there was a community standing alongside me, holding up my hands when I was too tired to keep them up myself.
Be that community for families around you.
Commit them to prayer. You may feel like you fall short, but just as you have experienced comfort, you can also extend it. Not in perfect words, or the perfect scripture passage, but by your constant presence, interceding for them, and being present with them.