A Personal Note of Praise
Sometime ago, I mentioned that one of my children had some medical needs. The Lord has answered the prayers of people across the US regarding my one-year-old daughter, Katelyn Grace.
KATELYN GRACE’S STORY
Besides my family, I have two great passions, the first of which is road cycling and the second being shooting the 1911-styled .45 ACP pistol and learning the modern defensive pistol craft as espoused by the late Col. Jeff Cooper.
When I graduated from high school, I flew out to San Diego, CA. and rode my bicycle back to Jacksonville, FL. I raced for years and ride approximately 8,000 miles a year.
In 2006, I changed my saddle to one of the new ‘boy-specific’ anatomic bicycle seats. Two months later, my wife was very pregnant! At her age, my wife was in a high-risk category for having a child with problems, particularly Down Syndrome.
We rejected our doctor’s suggestion to take “genetic counseling” tests, content to accept from a Sovereign God that which He had for us.
On February 2, 2007, my wife gave (home/water) birth to Katelyn Grace. Our four homeschooled children were so excited and the birth was so much easier than the first four! But the mid-wife quickly noticed some DS-like characteristics in Katelyn Grace. My wife and two older daughters also noticed certain DS characteristics.
We were stunned. My wife and I had four normal children who were high-achievers: two National Merit scholarship finalists, one National Honor Roll, 4 state MTNA champions (piano, violin, cello, violin), etc. This couldn’t happen to us.
But, the Lord had providentially prepared our family for this event. DS was not foreign to us. Our dearest friends had a DS son. We had taken care of him from time-to-time over the past 10 or so years. We accepted him as a part of our activities. My third daughter is his best friend. He, like most Down Syndrome kids, was so happy, kind, and loving. When our time came, his family provided us with encouragement only possible from those who have "walked the walk".
The mother of the DS son is a fine Christian woman. I have known her, and admired her Christian testimony, for over 40 years. In talking with us about her own struggles, she recounted how devastated she was when she found out her son was DS. She said that she wouldn’t even look at him and when she did, she cried uncontrollably. She said she thought she could never love him. I was shocked at her [frank] admissions. I had known her since I was eight. I never imagined that SHE, of all people, could have had such a struggle.
But, she said, her uncle, a pediatrician, had told her that she would love her son just as much as she loved her other children and that in six months, she would not trade him for a normal baby. Her testimony to us was that she found that to be true!
But, we still had struggles reconciling our faith in an all-powerful, all-loving God with our daughter’s plight. One of our closest neighbors who was a critical care pediatric nurse for over 30 years had told us that she could not believe in God because of what she had seen. She never elaborated on what she meant by “what she had seen” that lead her to such a conclusion. We couldn’t understand how anyone could feel that way. But now we were seeing, first-hand as parents of a small baby with special needs, perhaps a little of what she must have meant. I won’t speak for my wife but I must admit that I went through all “the questions” of faith.
Katelyn Grace was a happy little baby until she was four months old. We were just getting adjusted to the idea of having a DS baby. Then, our world imploded again. Katelyn Grace’s eyes started rolling back in her head. She would suddenly and inexplicably jerk, sometimes dropping her head forward. She became unresponsive for extended periods. This would happen 60 times a day and continue through sleepless nights. She stopped smiling, laughing, interacting, babbling, grabbing things, etc.
We took her in for testing. The doctor gave us a four-page handout along with a few comments and a diagnosis of epilepsy and went about his busy schedule. Again, we were stunned. DS was “simple”. We had just come to terms with it. Epilepsy is anything but simple. Why our baby, our daughter? Why us? How could God allow such suffering in a helpless, innocent little baby?
We took her to MUSC in Charleston. Their solution was (experimental) anti-seizure medicine. We didn’t want to drug our baby, just mask the symptoms, and reap the unpredictable fruits later. For the next ten months, we sought other solutions. We visited doctors in Atlanta (5x’s), California (6x’s), and Washington State (1 time).
God has been faithful and gracious to us. He led us to a doctor in California who had a DS son with epilepsy. He had been successful in controlling the seizures through nutrition and not drugs!
Two weeks ago, after the third visit, my wife, 2nd daughter, and Katelyn Grace came home from California. The nutritional approach apparently worked! Katelyn Grace has not had a seizure since that time! The doctors at MUSC examined Katelyn Grace and were all amazed.
My humble, stumbling testimony for the Lord is that while we are not always faithful to Him, He is always faithful to us! And, whether it is dealing with disappointments in religious/educational institutions or dealing with serious health issues in an innocent daughter, God is always faithful.
Blessed be the Name of the Lord!
Mark,
The story of Katelyn Grace hit me hard. Nancy and I have been blessed with 8 wonderful grandchildren. Any of the 8 could have had DS, or any other problems such as Muscular Dystrophy, and a myriad of other such debilitating diseases.
However, it wasn't the DS the hit me hard. It was actually the Epilepsy that hit me, as I've walked that walk in a sense. I've had a seizure disorder for over 20 years. I've been on medication for close to 18 years.
I was told by the Neurologist that I didn't have Epilepsy, but, when I look back upon the 2 or 3 years of what I experienced before I had my first "Grand" seizure, it certainly appeared from my perspective that I in fact had Epilepsy.
Now that I know what the problems are that Katelyn Grace has, I will be praying that God's amazing and all sufficient grace will continue to work in her life and Wendy and your lives, too.
Bill
Posted by: Bill Lamb | April 16, 2008 at 03:55 PM