What I Have Learned From Having Cleft-Affected Child

Our youngest daughter just completed her third surgery on her cleft palate this Thursday. The surgeon has tried twice to completely close up her palate but the two previous times a fistula (opening) has developed. Because of this, there are certain verbal sounds that she cannot make, there are certain foods that become problematic to eat and thus cause potential infection or discomfort and pain. My wife and I have been working through the weight of our daughter’s problems since before she was born three years ago. I think I have learned a few things along the way about myself, my God, and my spiritual life. Here are a few of those things that I have learned:

1. Prayer works – along this entire journey we have had countless prayers answered. For example, before she was born, her situation looked bleaker than a correctable cleft lip and palate. Conditions such as Down’s Syndrome, spina bifida, and kidney malfunction were thrown around by her Perinatal Specialist. We immediately began praying and had our church pray and many of the worst possible scenarios did not come to pass.

2. I can pray with intensity – there is nothing like desperate circumstances to get you on your knees with a sense of urgency. I cried, I pounded my fist in anger, and I pleaded with God to heal her and keep her from harm. I never knew that I could pray so vigorously.

3. Sometimes prayers end with resignation – After I have prayed in all of the urgency and intensity as I knew how, I often was just left with one prayer. “Lord, I place my daughter in your hands. I have done everything that I know to do and I am going to trust you with her care.”

4. A marriage can grow closer – I often hear about marriages that struggle when their children are suffering through intense medical situations. I can see where these things can zap the energy and effort needed to keep a marriage relationship going well. My wife and I have had our moments where we have let the magnitude of things overwhelm some of the commitments that we have made to each other but we also quickly learned that we needed each other because no one else on earth knows exactly what we are going through.

5. People mean well but say silly things – I don’t begin to pretend that our daughter’s health concerns are worse than other children with deformities or illness but when people passively dismissed her ailments as “just” this or “just” that or “that can be fixed,” I kind of cringed inside. I know that these people were thankful that her condition was not worse than it was but their comments didn’t accurately reflect what we will be going through over the next 15 years. My wife and I realized that expecting others to understand what we are going through is not realistic. We have to rely on God for comfort and strength and on each other for understanding and encouragement.

6. There is no quota on medical issues – In the first year of her life, we thought that each tough situation that we surpassed meant that we got a break for a while. That did not turn out to be true. Surgeries, pneumonia, scoliosis, hernia, and eye procedures all have marked our daughter’s life over the last three years. I have learned to quit keeping track and just move to the next thing. God is here now, God was there then, and he will be there in the next thing.

7. A church family is important – Visits to the hospital, picking up our older daughters at school, meals when we just get back from the hospital, and prayers have marked how our church has supported, assisted, and encouraged us. I couldn’t imagine going through all of this without the support of friends, family, and church.

8. God’s blessings come in the darkest time – I can remember nights when my daughter was in so much pain that she couldn’t sleep and I would just pray and pray for her comfort and rest. When my prayer would be answered there would just be a complete outpouring of peace and comfort from God. I almost felt like I was wrapped up in it. I couldn’t experience that if I didn’t first experience the pain and trouble of the dark times.

How To Think About God During A Crisis

Cover of "Come, Lord Jesus (Rekindling th...

Cover via Amazon

I am reposting this because I thought about this today as we took Joy in for her Hernia surgery.

Everything went fine and God was good. Thanks for your prayers.

Joy is our youngest daughter and from birth (she was born with a cleft lip and palate) has been under doctor’s care for a variety of reasons including most recently for her infantile scoliosis. Last Friday, the torso cast that she had been wearing since August was removed and she now is in a brace. Her discomfort and pain because of the brace was evident early on and because her torso and abdomen had been under a cast for four months her sensory perception in this area was off. At one point Saturday, she was writhing in pain and pointing at the brace and saying, “It hurt me.”

They next thing we noticed on Saturday were signs of what we think may be a hernia. Weekend physician care is always sketchy and we spent most of the afternoon trying to figure out how concerned to be about her condition and what we needed to do to care for her. On top of this, we seem to have a small leak in the house that we were trying to manage and determine the cause. The point of all this is that there was nothing relaxing and calm about our weekend. In fact, it was very stressful and filled with worry.

I would like to tell you that I was the picture of serenity and hope throughout the weekend and that I was quoting scripture and trusting the Lord for every need. But that would be a lie. But here are a few of the things that were helpful to me and may be helpful to you during times of crisis.

1. Look for the Lord’s presence. I learned this through working at an inner city ministry that was marked by organized chaos. My constant prayer was “Lord, show yourself.” During those times at the ministry, I can’t tell you a time when God did not answer this prayer. Whether it was a word exchanged between me and another or a simple moment of feeling the presence of God holding me up and giving me strength. God is working all around us, even in times of crisis, and we need to have our God radar turned on.

2. Find something to pray repeatedly. Sometimes we are so stressed and are bombarded with noise and distraction that we can barely think straight. Praying elaborate and thoughtful prayers is not feasible. During these times it is best to pray a sentence or a verse that is simple and repeatable. Sentence prayers that I have used during stressful situations include the Jesus Prayer, “The Lord is my shepherd I shall not want,” “Lord, help me,” and “Come, Lord Jesus.”

3. Know what is in your toolbox. Despite our weaknesses and feelings of helplessness, we, as believers, have a tremendous amount of resources at our disposal. We have Christ dwelling inside us, we have the advocate and helper Holy Spirit, we have the new life given to us through conversion, and the power of the God of the universe.  We need to start living in the reality of the power that God has made possible and quit letting fear and worry overwhelm us.