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.

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4 thoughts on “What I Have Learned From Having Cleft-Affected Child

  1. Thank you for sharing your heartfelt feelings. Your family has been in my prayers for over 3 years and will continue. We love you and your precious girls.

  2. Scott, your sharing has taught me how to empathize and catch a glimpse of what it must be like for you. It is true, I will never completely understand the depth of despair and the height of joy that you and Leah have experienced, but in your sharing I feel I have come a little closer to understanding. Thank you for opening up your heart and thoughts to us. We as a church family love you and your family and please know I am standing in the gap for you and your family. God is in control and I love how He gets to show off His power and glory through your circumstances. Thanks for letting Him shine in your life.

    Lisa Francis

  3. Scott and Leah, Such wise words!! What a journey of faith, fun, friendship, family since you were in Levelland. We are so proud of your faithfulness during trying timnes. What a witness for Christ! I am sending this article to a good friend whose daughter has Stage 3 brain cancer. She is almost 2. She has been at Cooke for several weeks and her picture will be on the jumbo tron at the Rangers game this week. RONALD MCD HOUSE selected the parents to be the Rangers guests.. The past weveral weeks have been heartbreaking for them. Pray for Callie Cochran (Phillip and Courtney Morrison’s )sweet child. We are praying for Joy and both of you. To God be the Glory great things he has done for Joy and Callie.

  4. Scott, thank you for sharing your thoughts in such an open and genuine way. I can see how through being Joy’s Dad God has given you a compassionate heart and the perseverance to continue seeking Jesus even in the most challenging moments. It is amazing how God can use such incredibly difficult circumstances to allow us to experience Him in ways we never imagined possible. I am thankful that you and Leah have each other to lean on as you trust God with each step of this journey. We appreciate your friendship and the example you set in following Christ.

    the Brown family

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