The Story of Joy, Part 3

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.

After Joy’s amazing cleft lip repair, we continued to walk daily in faith that she would improve and heal. It was a whirlwind of doctor visits from her Craniofacial surgeon, to GI specialist, a nephrologist, a urologist, a geneticist, a pulmonologist, an opthalmologist, ENT specialist, cardiologist, and later an orthopedic specialist. I had to carry around a little notebook to keep everything up to date for the appointments.

In the mean time, we still needed her cleft palate repaired and would wait until she was around 9 months old to get that done. During that time, she had pneumonia and so many ear infections due to the cleft. I even surprised one of her doctors when I told him baby food was coming out of her ear when she ate!! That sounds crazy, but all of that was connected and open before her first surgery. So many things were causing issues that seemed overwhelming at the time.

joy3

Along with doctor visits, we had awesome ECI therapists (PT, OT, Speech/feeding) come into our home to help with Joy’s progress. They made a huge difference and listened to my concerns. Her PT was an integral part of helping us discover Joy’s scoliosis at such a young age. This was another God moment!

Joy has had 4 cleft palate repairs. Several had to happen because she did not heal properly after surgery. So many times we were sent to the geneticist because her doctors just knew she had a syndrome that would explain all of the things going wrong. Nothing was pinpointed, but we still had to move forward with her care.

Her first cleft surgery was extremely hard. It makes me sick thinking about it. The recovery room for Joy has always been the hardest. She does not respond well to anesthesia and has an extremely hard time waking up and calming down. After each surgery comes weeks of liquid diets, restrictions, and sometimes slow healing.

People prayed each time for her surgeries and God provided His strength and peace during those tough times. I cannot imagine walking this journey without my brothers and sisters in Christ. The body of Christ has held us and walked with us every step of the way. We are continually grateful for this blessing.

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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…….

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.

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.