The Story of Joy, Part 1

One part of my spiritual and personal story that I haven’t discussed much is the pregnancy, birth, and early life stages of our daughter, Joy. My wife recently wrote about this and I thought I would share it on the blog with a series of posts. God has moved in profound ways concerning Joy and her life has taught me many things:

Enter my wife, Leah.

joy

I was 18 weeks pregnant and went to see a specialist because they thought there was an issue with my uterus. At this appointment, they actually found something wrong with our baby.

I remember the nurse and doctor walking in the room. They had that “look” on their faces that something was wrong.

Scott and I sat and listened to a list of serious issues that the doctor felt was wrong with our baby from the findings on the sonogram pictures. There was everything from Down Syndrome, to heart issues, to intestinal issues, cystic fibrosis, and her cleft lip and palate.

The doctor felt strongly that she would have serious issues and we should consider aborting the pregnancy. I felt like someone punched me. I remember saying a strong “no!” to the abortion topic, and we left with lots of questions and feelings of helplessness. We got home and just felt so saddened. We did find out that day that our baby was a girl and soon realized we needed to find a name so that people could pray specifically for her. More on that next time…….

Advertisements

Running the Race: Running For Joy

On Dec. 4 I will run in the White Rock Marathon in Dallas. Once a week, I will provide my observations on the connection between the spiritual life and training to run a marathon. Please visit my White Rock fundraising page to honor my daughter and contribute to a great cause.

This week is race week. There is no cramming for the marathon. Whatever I have accomplished in my training to this point will have to suffice. In this space, I have talked quite a bit about what I have done in my training and it is obvious that I will be the one who will complete the race (or not). But I started this entire quest in honor of my daughter, Joy, and the great work of Texas Scottish Rite Hospital For Children. I have to restrain myself from making this all about me because Joy is my inspiration.

Joy, now three, was born with a Cleft Lip and Palate. Her first surgery on her lip occurred when she was three months old and her palate was worked on when she was eight months old. After her palate surgery, she was in too much pain to eat and stayed that way for an excruciatingly long four to five days. At four months, she was placed in the hospital because of pneumonia and for several weeks afterwards, we had to feed her through a tube to avoid milk entering her lungs.

When she was a year old, we had her examined at Scottish Rite for possible curvature of the spine. Sure enough, she had infantile scoliosis and we started treating her and will continue, no doubt, throughout her childhood. For more than four months, she was placed in a cast that went from her hips to her shoulders. Now, she wears a brace that can come on and off but there is no sign of her getting out of the brace anytime soon. I haven’t even mentioned the eye surgery she had or the hernia surgery or the two additional palate surgeries.

I call her a professional patient because she knows her way around a doctor’s office and lets most everything just run its course without too much of a fuss or problem. When she was two, she got a flu shot and didn’t even cry. She is tough, smart, cute, and funny. She lives up to her name and has captured the heart of many who have been around her. I am running for Joy. She is my inspiration. I figure that my five hours of running is the least I can do to honor her, the rest of my family, and other kids that need medical care.

So, if I finish the marathon, congratulate me for a job well done but don’t forget the little girl who has already made it through the equivalent of about ten marathons’ worth of medical procedures and surgeries. Joy deserves the attention and pats on the back much more than I do.

Update: Joy and I were featured in the Life section of the Dallas Morning News yesterday. They did a story about first time White Rock runners. The story even mentioned the blog. If you have an online subscription, you can read it here.

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.