Lilli was born during an ice storm, by emergency c-section in January 2004.
She had stopped moving in the womb. I knew something was not right. We drove to the hospital through sleet on deserted, icy roads. My husband reached his hand out the window and continually grabbed the moving windshield wipers to thump the ice off, because they kept freezing and getting stuck. I called a few people on my cell phone. We were scared. We did not know what to expect. The doctor was meeting us at the hospital.
Upon being pulled out, she stopped breathing and had to be rescusitated. Twice. She was having seizures, and was transferred to a different hospital to their NICU. To this day we do not know what caused her distress. But lack of oxygen caused damage to the parts of her brain that control vision, language, and motor function.
Before they took her to the ambulance to be transferred, they wheeled her to my bedside inside an NICU transport incubator. She was intubated. I reached down and stroked her fragile body while my eyes and heart overflowed with the greatest mixture of love and pain I have ever felt.
That first night of her life was the longest night I have ever endured. I was separated from her, and my husband Jasen went with her. Frank, the pastor of the little church we belonged to in Virginia, went with Jasen and spent the night with him at the other hospital while newborn Lillianna Jae endured many tests at the other hospital. Frank's wife, Joyce, spent the night in my hospital room to keep me company and help me, since I had just had major surgery. I will always treasure in my heart and be grateful that they spent the night with each of us, as we began the toughest journey of our lives. I was transferred to her hospital to be with her the next morning. I hear that almost never happens. I spent several days at the second hospital, recovering from a c-section, traveling back and forth from my hospital bed to Lilli in the NICU.
There were two doctors in the NICU that gave us two entirely different prognoses. The first doctor told my husband in a very cold, distant manner that our baby had brain damage, that she would never walk or talk, and she would be mentally retarded. Jasen had to walk out of the NICU, climb up the stairs, come to my room and break that news to me. He held my hand and we cried and prayed.
We were stunned. We needed more information, and later found a different doctor who sensitively explained to us that we would not know how extensive the effects of the damage would be until she grew older. He pulled up the MRI of her brain and pointed out gray areas as he carefully explained the damage. But he gave us hope. He told us that we are "amazing creations," and that sometimes a baby's brain can "re-map" itself as the baby develops, and use other parts to compensate for the parts that were damaged.
We chose to listen to the second doctor, and clung to the hope of miracles.
At one year, she was diagnosed with a type of cerebral palsy called spastic diplegia. Parts of her brain were damaged that affected her ability to use her legs. They were stiff. It was too early to tell whether she would ever walk or even crawl. She was still having seizures. We were also concerned about her speech delay and trouble with choking and gasping every time she ate or drank. She started physical, occupational, and speech therapies. Her eyes were crossing and she needed surgery. We prayed desperately for her brain. We remembered what the second doctor had told us. We prayed constantly that her brain would be healed and that it would "re-map" itself like the doctor said was possible.
Many people over the years have asked what caused Lilli's brain damage. As any mother might, I felt guilty those first few years and wondered if it was my fault that she had cerebral palsy. Of course not, you think, as you read this. If you had a baby with special needs, I'll bet the thought What happened? Crossed your mind. Maybe once. Maybe a thousand times. It's only natural. It didn't help that everyone we knew wanted to know "what went wrong" as well. I desperately researched the causes of CP. It was almost like an obsession. For a few months I spent all of Lilli's napping hours on the computer, typing words in a search box. We met with specialists. What did I do wrong during my pregnancy to cause Lilli to be born this way? I agonized. What happened when she was in the womb? Or was it the actual birth process? Or both? There were no answers for me. No specialist, book, or website could tell us what caused this to happen.
Time passed. I had not quite given up on my search for answers, but I did not know where else to look. Then one Sunday morning when Lilli was a little over one year old, our church had a guest preacher. He had us turn to the book of John as he talked about Jesus healing a blind man. He read John 9:1-3.
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." (NIV)
That was a life-changing moment for me. The words of Jesus pierced my heart and I had the realization that Lilli's disabilities were not a result of something I had done wrong. I understood for the first time in my life that God really is in control of absolutely everything. He had a purpose in Lilli being born this way. He is not cruel. He did not forget about Lilli, or Jasen and me. He did not turn his back and accidently not make her turn out "ok" when she was born. It was not that I ate or did something wrong during my pregnancy and God did "not notice" or help my unborn baby. Every child that is born into this world is a complete and total miracle. If you have ever watched a baby born and held him or her in your arms in the first minutes of life, you knew this. Even if you did not believe in a God, you knew that baby was a miracle, not created by YOU.
God had a purpose in creating Lilli to be exactly the way she is. I did not understand it. But I did understand that God had perfectly and purposely formed her to be born this way so that His work might be displayed in her life. And in my life and in my husband's life. God does not make mistakes. He never says "Whoops." He is not distant or unaware. He is perfect, and He is great with fine details. He is the ultimate "event planner." Psalm 139 says "All the days ordained for me were written in your book before one of them came to be."
It is difficult for some to understand, or believe that God, who is so loving, would let a child be born with a disability. After that day, I slowly began to see Lilli as a perfect creation designed by God on purpose. After watching God work in so many ways in and through Lilli over the course of her life so far, I know without a shadow of a doubt that God loves my Lilli with a fierce, endless, perfect fatherly love that I cannot even fathom. He takes care of her more than I do. I wish I had the time and memory to write even a fraction of the stories of ways I have personally witnessed this. If you think I am a sad, deluded person, then you probably don't know my God personally. And I wish you would give him a chance. He is real. I'm not perfect. People that believe in God and know Him personally are not perfect, they are hypocrites who are filled with failures and they love God because He loves us, despite our failures.
Eight years have passed. I will not sugar-coat them. They were the toughest eight years of my life. Some things have gotten better, and some things have stayed hard. Some things are even continuing to get harder. But now, Lilli can walk, run, read, type words and short sentences on an ipad, feed herself pancakes and chicken nuggets, and has the best laugh I have ever heard in my whole life. She has touched the lives of so many people I cannot begin to count them. When I first started this blog, I wrote that Lilli was a "mystery." Now I think it is better to describe Lilli as a "miracle in progress." From the moment she was born to this very day that I write this, the list of miracles is endless. From the things she is doing despite her traumatic birth and ensuing medical problems, to the way she has touched so many other people's hearts and lives. Most of all, my husband's and mine. If you are reading this, she has touched yours.
"… this happened so that the work of God might be displayed in his life." I feel so privileged to have a front row seat in watching God work through Lilli, and display his glory through her.
It takes time for a mother to come to this realization. I wonder if every mother of a child with a disability goes through this phase of guilt and wonderment. It is so typical for us to blame ourselves and think that we either did something wrong, or we did something to "deserve this." But after eight years, I write with tears in my eyes that I feel blessed beyond belief to have Lilli for a daughter, and humbly feel that I "don't deserve this" blessing of abundant miracles and hope. The world tells us that there is something wrong with children with disabilities, that they are a burden. I'm not saying it isn't hard. It is incredibly hard. But life is hard for everyone, in different ways. There is nothing "wrong" with Lilli. I know that now. She is not a mistake. She is a beautiful, awesome little person who needs extra help. And as we help her, we are drawn closer to the One who created her. She is… well, she is Lilli! Handmade personally by her Creator with great care. Just like you and I were.
Thank you God, and happy birthday, sweet Lilli.
A side-note: Years after that first doctor in the NICU broke the devastating news to Jasen that Lilli would never walk or talk, we were in the ER with Lilli again. She was about four, and had just had yet another seizure. The three of us were waiting in a room in the ER for the on-call neurologist to come in. After several hours, he came to check on Lilli. After a few moments, he said he would be back. Jasen turned to me and said, "Jennie, that was the doctor!" It was the very neurologist that had given Jasen such bleak news on her second day of life in the NICU. When the doctor came back, Jasen could not help himself.
"You were Lilli's doctor in the NICU when she was born," he said. The doctor wrinkled his brow in confusion. He did not remember us. "You told us when Lilli was born that she had brain damage, and that she would never walk. She is walking now. Our God is an awesome God, and He can do anything. You need to give parents hope when you give them news like that." The doctor said nothing. He could not get out of the room fast enough. We never saw him again. But now I know how poetic justice truly feels.
It feels good.
|Baby Lillianna in the NICU|
|Jasen talking to baby Lilli...a daddy's girl from the very beginning|
|Lilli, running at age seven|