Kristol's Story


Krissie Site.jpg

Kristol Jonni, Our Pure, Anointed, Gift of God! By James and Debbie

Our doctor's words went through me like ice, and I stood there for a moment in disbelief as I tried to grasp the consequences of his last few words: "If my baby gets worse and develops pneumonia, would I be willing to deny her medication and let her die?" I asked. "Well, we doctors consider pneumonia the 'old peoples best friend", he said. "It's just a nice way out."

I cried as I drove home with my two-year-old daughter, Kristol Jonni. As I shared our "doctor's visit" with my husband, we began to reflect on our youngest daughter.

Her name means "pure, anointed, gift from God!" My husband and I had decided on the name before she was born. As we were already blessed with three daughters,all healthy and beautiful, everyone assumed that this pregnancy was our "try for that boy."

But our feelings were always the same. We didn't care about the gender, as long as the baby was healthy. Little did we know that Kristol would change our way of thinking, and our lives, forever.

On April 9, 1993, we were ecstatic with the birth of our daughter. She was so beautiful to us. She appeared normal, and her beautiful, almond-shaped eyes left us no clue as to why our obstetrician would ask our family and friends to leave the delivery room. "She is a pretty girl," he said gently. "But she does have some characteristics of Down Syndrome."

He carefully pointed out the shape of her eyes, her little ears that were slightly lower on her head, her short fingers and a crease on her right hand. We listened in shock as he explained some of the other areas of concern: heart trouble, bowel obstruction and hearing loss, just to name a few.

Never had a couple been told in a more tender way that their lives would never be the same. And one thing was for sure, we had fallen in love with our daughter long before she was born, and we were ready to get her home to start the next chapter of our lives.

One morning, six months later, I noticed Krissie's body moving strangely in tiny jerks. The next day, she was diagnosed with a seizure disorder called infantile spasms, a severe form of epilepsy that is damaging and difficult to control. The epilepsy was far worse, we were to find out, than the Down Syndrome diagnosis. Kristol continued to have hundreds of seizures a day, despite steroid injections that left her twice her normal size and debilitated her immune system.

Later, the devastation of the Northridge earthquake seemed trite and far away as my nine-month-old baby lay in an oxygen tent and struggled to breathe through her fluid-filled lungs. My husband walked into the room, looked at Kristol, and tears filled his eyes. "We have to give her up to God," I said as I hugged him. "No," he said, "I can't give her up. God just gave her to us and He'll make her better." Kristol battled pneumonia and came home two days later.

Her condition varied from that point. We tried medications, diet and physical therapy. There were good days and bad days. On the good days, she had about a dozen seizures and I could hold her. The bad days brought 100 or more seizures while we took turns struggling to hold her contorted little body. One morning we couldn't wake her. Our baby had slipped into a coma. The blessings were still ours though, for we took her home again, one week later.

In the 21/2 years of Kristol's life, through the struggles and heartaches, we still managed to collect blessing after blessing. In a world that shuns imperfection, we had family and friends who saw our daughter as we did, beautiful and precious. In our darkest times, these people shone like the sun and kept us going. Not everyone was positive though. "Well, at least Krissie got the seizures and not one of your other daughters," said one friend. "She is going to be delayed anyway, right?" "Does Debbie really love it?" asked another friend.

Through it all, I've learned so much. I loved it when my girls were babies. I love watching them grow up into beautiful women. And, I know the day will come when I will watch them go out the front door and start lives of their own. God has given me one daughter who will be a baby longer than most and one who won't so quickly go out that front door.

I may never know "why" these things happen. But I know that God does. I will continue to learn from Kristol. I will learn how to trust, how to love unconditionally, and how to be happy through difficult times. Pure, anointed, gift from God? You bet!

Oh my, where have the years gone. Reflecting back, we have seen the hand of God work in so many ways through our little gift. As Kristol began to grow, her ankles became so deformed it was painful for her to try and stand. A friend of ours arranged an appointment with Shriners hospital and through a miracle gave us a date for corrective surgery.

When the day arrived, we tried to be mentally prepared for what was to come. James took a week off work and, as we prayed for our daughter before surgery, we went back to Krissies room ready for the 24 hour vigilance that would be required to watch her during her week of recovery. At the end of the week in our exhaustion God had another appointment and we were able to minister and pray with a mother and daughter who wanted to know Christ as their personal Savior. We thought we were there just for Kristol, but at our weakest moment, Christ became strong and was lifted up. What a tremendous God!

Unfortunately, surgery on Krissies ankles did not stop the seizures. Now that she could stand up with no pain just meant the drops during a seizure were longer and harder. A shattered jaw, busted lips and multiple facial surgeries were evidence to the quiet epilepsy that lay beneath the surface of Kristols beauty. As the years went by, we began to notice some unusual characteristics developing in Kristol. The doctors told us that Kristol had autistic impairments.

As peculiar mannerisms began to take precedence in her life, then once again our lives were forced to change. Although Kristol was 10 years old, she was still just our baby. Mentally she was still about 8 months old. And now, the autism would not allow us to cuddle our baby the same way we were used to. Once again we were “pushed” into finding another way to lift up Gods goodness to us. We still had our daughter and were thankful to God for what He has shown and taught us through her short life. How precious God becomes through a simple chorus of “Just a close walk with Thee”!

Our next challenge with Kristol had come in the form of severe scoliosis. When braces could no longer stop the severe curvature of her spine, she was sent to a spinal surgeon for a diagnosis of her condition. His words cut right though us. “She needs corrective surgery right now, or she will probably live less than a year!”

The severe curvature of her spine was pressing against her heart and lungs. Breathing was becoming more difficult and as we once again became helpless to care for our daughter, major surgery was scheduled for Krissie in just a few weeks. How could we do this again? Where would our strength come from? Kristol was now 13 years old. Her seizures and autism w ere still a daily part of her life. And now, she will die without surgery. As we once again wondered how God could be lifted up through this trial, we now know how He must have looked down on us and said, “How can I not be lifted up if you will just be obedient and have faith!”

Surgery arrived and once again we prayed for our daughter and then left her to God’s will.

Surgery went well and some how we were prepared for our 24 hour vigilance that would follow during the week of Kristols recovery. James was the worship leader and associate pastor of a small church that carried us countless times in prayer and support. Once again our family and our church family’s prayer and love for our daughter would carry us through another week. As we spent our days and nights in the hospital, the word spread that James was a pastor. Many other families in intensive care would request prayer for their loved ones and Christ was once again lifted up over and over in our weakness.

We have now watched 2 of our 4 girls walk down the aisle and begin lives of their own. Their choices to serve or reject God are decisions they will have to make everyday. But for Kristol, her future is certain. God will hold her close in His arms and one day she will dance in a body that will no longer hold her captive. James and I know that one day she will find words and together we will sing of mercies and goodness of the Lord. We know there will no longer be any pain watching her fall, for it will be at the feet of Jesus and our joy will be complete for eternity.

As we watch our 3rd daughter, Amber, grow into a beautiful young lady, we wait patiently for the day to come when she will also leave us to start a life of her own. We pray for Gods blessing to fall on all our girls for their diligence in all the years they too have struggled with Kristols disability. Their steadfastness and trust in God has been the glory James and I proudly wear. Beauty beyond diamonds and comfort beyond words.

What does the future hold? That can never be answered. But we know who holds the future and He does hold our hands. And Kristol Jonni, our pure, anointed gift from God, will one day be complete because we know that He who began a good work in us will be faithful to complete it. May God be continually praised! To God be the glory, forever and ever...Amen!


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