Special needs are not all physical and emotional.
by Lynne Hudak as told to Wendy Lynn Decker
“Ryan has a rare and incurable kidney disease. He’ll need a kidney transplant by the end of the year.”
I felt as though I was going to be sick all over the doctor’s desk. The words dialysis, blood work, feeding tubes, and surgery poured out of the doctor’s mouth, each one a blow to my head. I grew faint. I’ll give him my own kidney, I thought. During our last visit, the doctor had offered us several different scenarios to ponder while we waited for a diagnosis. However, I never imagined our 16-month-old son’s condition would turn out to be the worst-case scenario.
My husband and I asked the doctor numerous questions. After the immediate shock wore off, we had to quickly decide how to care for Ryan and our two girls at home, both under the age of three. My husband is self-employed and could not take time off work, and the hospital was 32 miles away from our home in rural New Jersey.
Prior to Ryan’s diagnosis, I had hired a mother’s helper to aid me at home with my children. Though I like doing things on my own, I felt drawn to Mimi. Her openness with her Christian faith comforted me in a strange way.
Though I wasn’t a Christian at the time, I soon discovered that Mimi was a Godsend. Trustworthy and competent, she grasped the reins of my family duties while I stayed at Ryan’s side. The first week I remained with Ryan every moment except for the daily commute home to spend time with my two young daughters.
During our 32-day stay at the hospital, Ryan and I shared a room with other patients. We watched other children come and go while Ryan’s health plummeted. I knew we couldn’t remain at the hospital due to the long drive, so I took a course in how to administer dialysis. Three nights a week I pried myself away from Ryan and went to the dialysis center.
Longing for home
Although the center was only a five-minute trip down the road, I dreaded those raw, cold January nights. Sad and angry at the situation, I desperately wanted to be home with my family. Instead of inhaling the sweet scent of my new baby girl, I breathed in the antiseptic air of the dialysis center. I stared at the machine that would soon be a part of Ryan’s nursery. I can’t believe I am sitting here learning how to use this machine to sustain my baby’s life.
We had no idea how long Ryan would be on dialysis, because he was so sick. He needed to improve physically before he could undergo a transplant.
Learning to pray
When we arrived home from the hospital, that cruel yet merciful machine sat waiting in Ryan’s bedroom. Though I had learned how to treat him, facing the procedure overwhelmed me. Ryan also needed to be given nine medications four times a day. The dressing for his catheter needed to be changed, his blood pressure monitored, and his weight and temperature taken regularly.
My neighbor Pricilla sat with me each night while I administered dialysis to Ryan. A devout believer in Christ, she began sharing her faith with me. I grew dependent on Pricilla to help me through some emotional periods. Before leaving my home each night, she promised to pray for me. Soon she began praying with me as well. After awhile I prayed even when she wasn’t there.
I knew that I needed God to not only help me through the difficult times in my life but also forgive my sins so that Jesus could be my Lord and Savior. Pricilla prayed with me as I asked Jesus into my heart. I hadn’t known it at the time, but God had set up an entire support system of Christians I had learned to depend on. The fact was, I needed God and my son needed a kidney.
While I anxiously awaited a kidney for Ryan, I also searched other avenues, one of which was to donate my own. However, after an in-depth physical, the doctors determined that because I barely weighed 100 pounds and had other health issues, they would not consider me a candidate.
I sought a second opinion at another hospital and took another battery of tests. This time the doctor approved me as a donor.
While awaiting the transplant, I discovered I was pregnant. Stunned, my husband, Bill, suggested I have an abortion.
Bill’s idea stabbed my heart with more pain and frustration. I didn’t believe it was right to kill one child to save the other. Once again, Pricilla stepped in and showed us a video of an abortion procedure. After viewing it for only a few minutes, Bill turned away. He knew abortion was the wrong thing to do. My faith continued to grow stronger, and I trusted that God would provide Ryan with a kidney.
Three weeks later, I received a phone call that a donor had been found for Ryan. The doctor told me there was a 50-50 chance that Ryan’s body would accept the kidney and that the transplant would be successful. The doctor also informed me that if the donated kidney didn’t work, no kidney would.
During that time, Psalm 27:1 became a great comfort to me: “The Lord is the strength of my life” (NKJV).
God’s faithfulness proved true: Ryan’s kidney transplant was a success. But more hard times followed. By the time Ryan reached elementary school, we learned that he wasn’t progressing the way he should. I’d gone through so much with Ryan that academics was last on my list at the time. I told the teacher, “My child almost died. I don’t care if he’s talking or not.”
But as Ryan grew bigger and stronger, I noticed a change in him beyond the delay in his mental progress. After he reached first grade, his temper tantrums escalated, and I got the brunt of them.
That didn’t surprise me: I was the one who held him down three times a day and forced repulsive medicine down his throat. I brought him to a doctor who jabbed needles into his arms. I shoved a tube up his nose so he could get proper nourishment. I’d be angry, too! When Ryan saw me coming, he threw any object within his reach at me.
We sought out therapists to help us. We thought Ryan’s anger resulted from enduring forced medical treatment, but it was deeper than that. He couldn’t keep up with his world. For him, the world was spinning around him, and he couldn’t get on.
In a span of five years, Ryan was diagnosed by psychiatrists as having bipolar disorder, Oppositional Defiance Disorder (ODD), Intermittent Explosive Disorder, Pervasive Developmental Disorder (PDD), and other emotional problems. We spent thousands of dollars on psychotherapy that was beyond his mental capacity. We traveled innumerable miles and applied techniques doctors taught us would help Ryan.
We have since found out that irreversible brain damage occurred from the kidney failure prior to his diagnosis. It could have been prevented had the doctor done a simple urine test when Ryan was 16 months old.
Prayers of thanks
Ryan is now eleven years old. He will never achieve a higher mental status than where he currently stands. His brain functions at the level of a six-year-old. Though I wish his prognosis had turned out differently, I am thankful I now know what to expect from Ryan. I pray for him and ask God to quiet his heart and to take the demons away that his underdeveloped mind sees, and to give him peace.
I also thank God for giving Ryan to us. It scares me to think how other parents might handle him. I know God has blessed us with him. This gives me strength to raise him. God’s plan became clear to me when I realized all the people He put in my path and the circumstances He allowed in our family that brought me to God.
Though life with Ryan will always be a challenge, I see God’s hand every day. He has answered our prayer in finding a school for our son to attend where he’s comfortable and can learn at his own pace. Our main concern is that he learns life skills that will enable him to function as independently as possible.
Seven months after Ryan’s transplant, I gave birth to my fourth child. Thanks to Ryan, our other children have become compassionate and understanding of those who suffer from disabilities. They are less judgmental because of what they’ve learned from their brother. Ryan even tells me stories about other kids with special needs that make him feel more fortunate. Most important, my children know God, and my husband and I were recently baptized.
Good out of bad
I believe God brings broken people together. Over time I have met other mothers of children with special needs. We have started a prayer group where we share our love of God with one another and pray for each other.
I have learned that there will always be trials in my life, but when I place my faith in God, He will be there to help me through and work all things together for His good.
About the Author
Wendy Lynn Decker is the wife of an elementary school principal and mother of two children, and she lives in NJ. She is a co-columnist for Sisters in the Lord Magazine and has been published in Cross Times, Spirit-led Writer, Cup of Comfort devotional series, Quiet Hour, and other publications. Wendy enjoys teaching junior church, singing with the choir, and spending time with her family. You can read samples of her work at www.wendylynndecker.com.