Witnessing God’s Goodness in the Suffering
Written by |
Our son Jonah’s last day of sixth grade was last week. Like every kid, he brought home loads of papers, folders, and notebooks. And like every kid, he left the contents piled on the dining room table waiting for it to magically clean itself up. After three days, I couldn’t take it anymore and went through it all myself.
In deciding what to keep and what to trash, I came across his daily journal from his English Language Arts class. Each morning, his teacher would give them a question of the day that they were to respond to in the first few minutes of class.
About halfway through the notebook, I saw:
“What’s a question you’ve always wondered about but never asked?”
And then his answer just below.
“I’ve wondered, since God created everything, and God is all good, then why did he create EB [epidermolysis bullosa] and give it to me?”
It broke my heart. I’ve written before about wrestling with the “Why.” And of course, we’ve struggled on and off with this question since Jonah was born with EB in 2009. But having it written there on paper and knowing it’s something that my 12-year-old is struggling to process just made it hit in a different way. I mean, goodness, middle school is hard enough without having to wrestle with questions like this.
I have no great answers for him. Maybe that’s the hardest part. I strongly believe that EB was not created by God and that God did not “give” it to him. I believe that EB is the result of living in a broken and sinful world, where things go wrong, where the laws of nature get screwed up. Just as I don’t believe God created cancer or COVID-19 or any other disease. Pain, disease, suffering, and death were not part of the original plan.
But still, there is no denying that a God who loves Jonah more than anyone ever will did allow him to have an extremely painful, often debilitating disease. He is struggling with it at 12. I’m struggling with it at 39. I don’t anticipate we’ll have any satisfactory answer this side of heaven. And some days, that is maddening.
But I try to remind him, and myself, that EB has brought good things into our lives as well. We’ve learned what’s really important in life. We have a better appreciation of things that really matter and things that don’t. We’ve seen the goodness of humanity in a way we wouldn’t have otherwise. We’ve felt God’s peace and comfort in a much more intimate way than we ever had before.
And we’ve had some really once-in-a-lifetime celebrity experiences with comedian Jay Leno, NASCAR great Joey Logano, and baseball player Kris Medlen that we wouldn’t have had otherwise. Even having Gideon, our youngest son who came to us through adoption, is the result of learning our genetic chances of having another child with EB. And of course, we wouldn’t trade him for anything in the whole world.
From left, Gideon, 8, and Jonah, 12, on their last day of school. (Photo by Patrice Williams)
Not that these things make it all OK, but they certainly give us something joyful to focus on and shift our perspective. And so, this is what I tell him: that in a really crummy, awful, painful set of circumstances, even in the doubt and the uncertainty, we see God’s gifts and glimpses of joy, and we know that these are the results of his goodness, his nature. That even when cells and genes and biology go wrong, God is still there in the comforting, the kindness, the love, and the lavish treats.
Jonah and Gideon hang out with their friend, NASCAR champion Joey Logano. (Photo by Patrice Williams)
Some days it’s easy to believe it with every part of us. Other days, we believe it only with our heads, waiting for our hearts to catch up.
But one thing I know with absolute certainty: God has a beautiful plan for Jonah’s life, and for now, it includes living with EB. Already, I have seen how God has used him to minister to people, to show them what courage, hope, and a fighting spirit look like. He leaves everyone that gets the chance to know him changed for the better.
When I doubt, seeing Jonah bring encouragement, joy, light, and hope to others is the only proof of God’s goodness I need. His life and the way he chooses to live are gifts to us all.
***
Note: Epidermolysis Bullosa Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
*Irene L. Dieterich
Amen! This column does give hope! What a beautifully written piece about your son with EB. Do not ever give up! Keep your courage and bravery Jonah. God has a plan for you! God is good….. all the time ! We will meet on the other side!
I have EBA.
Gina VanDevender
Our granddaughter was born 3 weeks ago with EB. Everything you’ve said in this article has crossed my mind since that night. We still don’t know her type yet, waiting on the genetics to come in. But we, too, have seen the hands and feet of Christ walking this path. Our son and daughter-in-law have seen small daily miracles and God’s hand working through their lives and the life of their baby daughter.
Patrice Williams
Let me know if I can be of help in any way. I remember how scary those first months are!
Abraham, Ubong Evans
OUR TESTIMONY TO THE GLORY OF GOD
EPIDERMOLYSIS BULLOSA: MY EXPERIENCE AND THE INTERVENTION OF JESUS
Preamble
This piece is a result of the vow I made with God while praying that if He gives me a healthy baby devoid of Epidermolysis Bullosa, I will tell the world about his healing prowess, and His ability to wipe tears and grant joy even in this generation. So, in fulfillment of that vow, I put up this write-up to boost faith and to encourage those still waiting on God for a miracle of a baby to continue trusting God, and believe that He will grant them their wishes in due time according to His will.
What is Epidermolysis Bullosa?
According to the NHS, epidermolysis bullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become fragile. Any trauma or friction to the skin can cause painful blisters. It is of three main types:
• Epidermolysis Bullosa Simplex (EBS): This is the most common type, which can range from mild, with a low risk of serious complications, to severe.
• Dystrophic Epidermolysis Bullosa (DEB): This type can range from mild to severe.
• Junctional Epidermolysis Bullosa (JEB): This is also a rare type that ranges from moderate to severe.
Despite these differences in typologies, one common thing they share is similar symptoms, which are:
• Skin that blisters easily,
• Blisters on the hands and soles of the feet,
• Nails that are thick or don’t form,
• Dental problems, such as tooth decay from poorly formed enamel,
• Difficulty in swallowing, and
• Thickened skin that may be scarred or change color over time.
My Experience
In 2013, my wife and I decided to have a second child after our first issue in 2011. The birth of the second child ushered in the rare disease (EB) into my family. At birth, the child emerged with blisters, which later metamorphosed into big wounds that were difficult to manage.
At the University of Uyo Teaching Hospital (UUTH), Uyo, Akwa Ibom State, Nigeria, the case of my baby was their first case of Epidermolysis Bullosa. According to the consultant, Dr. Nyong (now retired), who managed the case, it was their first case in the history of the hospital, and his first experience in his entire career as a medical doctor. This submission at first made me wonder: why me? Why my family? Why my child?
Since it is a teaching hospital, they sought to know what could have been responsible for this rare case. The child was admitted to the nursery for special attention and treatment. Day after day, the situation got worse despite the treatment. We spent months in the hospital with no sign of improvement in the child's health. Similarly, we visited the University of Calabar Teaching Hospital (UCTH), Calabar, Cross River State, Nigeria, and the result was the same, with no medical solution to EB.
During that period, I joined the doctors to read about the strange sickness. What was worrisome to me was that it is recorded that EB is a rare disease, and it occurs in an estimated 1 out of every 50, 000 live births, particularly among infants whose parents have a genetic disorder that makes it possible. Based on this, I started asking questions to know whether there was ever a similar case in the family lines of both my wife and me. I engaged the elderly persons in the family to know the family history regarding this. Unfortunately, there was no information on this to satisfy my curiosity. I left the extended family question and started looking at myself and my wife, including our first child (IdopiseAbasi), to see whether we have any skin disease that can cause blisters and long-standing wounds on our bodies; again, no information was derived to satisfy my quest. At this point, I resolved to face the situation with my wife and family members.
Since the hospital did not have a solution to it, I took the baby back with the mom to manage the situation at home. In seven months, I watched my wife cry daily, praying for a miracle, I watched the baby constantly cry in pain without any hope of survival, I watched my mom and mother-in-law bathe the baby daily in that condition with tears flowing from their eyes. In all these, as a father and a man, I wished I could turn things around and stop the flow of tears in my household, but it was beyond me. So, I joined them to cry, but not openly, quietly in my heart, while praying for God to intervene in my case and that of my family. Yet, in all those traumatic experiences, the baby still died; she could not make it. The pains were too much for her to bear. The experience was painful, but I had to pull everyone together and tell them there is nothing we can do but accept the will of God and move on.
In 2016, three years later, we decided to have another child. Though the fear was there, we were encouraged with medical advice that it would not happen again, that it is a rare disease. That gave us the necessary courage to go in for it again. Sadly, after nine months of pregnancy and subsequent delivery, behold, the result came with Epidermolysis Bullosa, the 2nd time in my family. A sight of it came with regrets that if I had known, I wouldn’t have bothered myself and my wife for a second child.
Based on this, I rejected the child's right to be in the hospital. I focused on the well-being of my wife, who had a cesarean section (CS) operation for the second time, without a healthy baby. I remembered telling my siblings and my mom in the hospital that once my wife is fine, I will go home with her and leave the baby for the medical students to use for their lessons. In response, my wife said, if I do not want the baby, she will carry the baby herself, that she is the mother. My sister (Inimfon) and my mom said the same thing, that the baby belongs to the family, so they can’t leave her in the hospital. I looked at them and walked away without answering them.
After discharge from the hospital, another round of pain, tears, and trauma set in at home. This time, there was less hope in the hospital solution. Everyone was aware that there was no medical solution to it. They knew that the child might not survive. So, the situation was like, " When will this one go? Even though nobody could voice it out. Prayers were said, but this time, it was: God, please, if you wish to take this baby away, kindly do it on time so that we will not face the long trauma we had with the previous case.
Without bothering myself too much, I returned to my workplace in Kano. A few weeks later, I was called and informed that the baby was no more. Again, I pulled everyone together and said we have to move on from the terrible experience. I resolved and concluded that I do not want another baby again. I informed my wife and my family members about my decision so that no one will ask me about having another child. I was satisfied with the only surviving daughter God gave me.
Family Prayers
In 2017, my siblings, led by my two amiable sisters (Inimfon and Comfort), decided to start a family prayer meeting to call on God for intervention. They choose every 3rd Sunday of the month to pray to God to intervene in my case. My mom gave them support, but I was wondering what they were praying for, and why they pray, since I have already concluded that I do not need a child anymore.
My wife was easily introduced into the prayer group, but I was still looking at them with sympathy that they do not know that they are busy praying for what I am not ready to go in for again.
They started the prayers in my senior sister's (Idara’s) house and later resolved that Idara is not the one they are praying for, so they moved the prayer to my house. In all, I was just looking at them. Though I could not tell them to stop, I also did not give them the full support they needed for such a gesture. However, they continued to pray without minding my reaction.
Eventually, I decided to join them, but without any conviction that I would have another baby. They too prayed without trying to talk to me about the need to have another baby. So, it was a situation of praying and leaving, while waiting and hoping for God to touch my heart.
The prayers continued in my house for months, and the group expanded beyond my siblings to include their children, a pastor (Brother Abraham), and even my worthy in-law (Dr. Imoh Johnson). They kept praying without doubt, but none of them approached me on the issue of trying to have another child.
Away from my immediate family circle, the extended family members joined in prayers collectively when we met and individually at their different destinations. Worthy to mention is the role of my maternal family, the great Ben Ukim’s family, who stood by me in prayers all through the period of trauma and depression. They fasted and called on Jesus on my behalf. Similarly, my wife's family prayed, and on many occasions, my father-in-law and my mother-in-law (Reverend and Deaconess Enobong Akpan) engaged us in special prayers asking God to change our situation. Also, my wife’s maternal family (the great Ikott’s family) rallied around us in prayers with their popular slogan: WHAT GOD CAN NOT DO DOES NOT EXIST!
In the same vein, my very good friend Mrs. Dorcas Esset joined the family in praying and fasting, while asking God for special intervention and uncommon testimony in my case. So, it was an all-around family prayer session for me and my wife to have another child, and for my daughter to have a healthy brother or sister. God bless them!
Jesus Intervention
Their prayers and sacrifices were not in vain. Jesus answered and touched my heart for His will and purpose to come to manifestation. It was in one of those family prayer meetings that God used the children in a very unique way to turn things around. It was the children's prayers and cries that God used to touch my heart. It was during the intense prayer session led by the children that I heard my daughter cry and called on God to give her a brother. Before the prayer session, she was the one who gave exhortation on faith. I could remember her saying that she has faith in God that her mother will give birth to a healthy baby. Those words and the cry of other children in the family moved me to give it a try again.
Right from that day, I kept asking God, " Would you deny the innocent children an answer to their prayers? I started asking Him to prove Himself in my case, let there be a reference case for testimony in my generation, and in the generation of children who called for His intervention. God heard and answered uniquely!
Similarly, in 2020, when we had our annual family reunion on the 26th of December at my maternal side, my very senior aunt (Lady Nse Ukpe) stood up and presented a prayer point for my family. She declared a 3-day prayer and fasting exercise, and asked everyone to join in voice in agreement and appeal to God to give me and my wife a baby, to give my daughter a brother, and that when we return for the reunion in 2021, there should be a testimony in answer to our collective prayers. The family fasted and prayed, and God heard them and answered just the way he answered the woman with the issue of blood. He answered just the way he answered Mary and Martha (Lazarus sisters). He answered just the way He answered the blind Bathemus. He answered just the way He answered Abraham and Sarah and gave them a son. He answered just the way He answered Hanah and gave her a son.
Today, we have a testimony to share. Jesus visited me and my family and gave us a bouncing and healthy baby boy, a bundle of joy when there was no hope again, a child of testimony, a miracle child, and a child who has built our faith in God more.
In all, we return all glory to Him, while praying for people who are still waiting for Him to intervene in their cases, that He will visit and meet them at the point of their needs.
This is our testimony, and may God receive all the glory!
Dr. and Mrs. Abraham Ubong Evans and Family