I met the Turner family this summer while attending a Joni and Friends Family retreat. I asked Caryn to be a guest blogger, sharing where she has seen God at work in the midst of parenting a son with Sturge-Weber syndrome. Enjoy what she has to share.
On the morning of February 10, 2003, my son, Christian Anthony, was born at 25 weeks gestation. He weighed 1 lb. 13 oz. and was 13” long. The doctor informed us that we had a long road ahead of us and that our son had a 50/50 chance of living.
We had a very long, excruciating journey in the Neonatal Intensive Care Unit. Some of the things Christian had to go through were…
· Breathing machine for 2 months
· Feeding tube for 2½ months
· 6 blood transfusions
· Surgery at 2 weeks old
· Several life-threatening infections
But by God’s grace, that journey didn’t end in death. We brought our baby home from the hospital on June 25, 2003—135 days after he was born. We thought our trials ended with the 4½ month journey in the hospital, but we were sadly mistaken. At 9 months old, Christian had a seizure. We rushed him to the hospital. After a CAT scan, he was diagnosed with Sturge-Weber Syndrome. This is a rare syndrome that causes developmental delays, glaucoma, seizures and possible decrease of brain function over time.
We have been on this journey for 9 years now. The doctors told us that Christian would never walk. Praise God, he’s not only walking, but running, and climbing. They said that he’ll most likely have several seizures every day. By God’s grace, he celebrated One Year Seizure-free in December. We are also rejoicing that he started feeding himself this past summer. However, there are still many challenges. He cannot talk or dress himself, he still wears diapers, and he has the development of a 1½ year old. I have been upheld these past 9 years only by the power of God and His sustaining grace.
During all my difficult times, the only place that I find hope & help is through God’s Word. Jesus is the only constant during my journey. He said that all believers will go through hardship (John 16:33). God’s Word is our only lifeline from drowning in the sea of our difficult circumstances. Every promise of God finds its Yes in Christ - 2 Cor. 1:20! When I am discouraged, I strive to find specific scripture to combat any feelings of despair & hopelessness. In the disappointing seasons that I’ve endured, I know God is sovereign, but I tend to doubt His goodness. I would think that #1 – God was not good and #2 – There was nothing good about my circumstances. By God’s grace, I was led to seek the scriptures & study the verses about God being good and giving good things to His children (e.g. Psalm 31:19; Psalm 34:10; Psalm 119:68, 71; Romans 8:28).
Praise the Lord that those of us who have put our trust in Christ can claim all His promises as our own. No matter what hardships we face, our good God will never leave nor forsake his blood-bought children - (Hebrews 13:5; Eph. 1:7)!
|The Turners at Joni and Friends Family Retreat|
You can check out Caryn's blog at: http://carynsthoughts.