"My Perfect Little Girl"Published by jon_gc on Wed, 07/09/2014 - 3:16pm
In the spring of 2004, I had just returned from leading a mission trip to China where we spent time with children who had various mental and physical disabilities. I remember telling God that while I was grateful for the experience, I couldn’t imagine parenting a child with a disability. I was 20-weeks pregnant with my third child, looking forward to a routine ultrasound, seeing my baby, hearing the heartbeat, and making sure everything was okay.
As my husband and I conversed with the ultrasound technician, I was apprehensive but relieved to hear the baby’s strong heartbeat. But, after a while, the technician stopped talking and went to find a doctor – my first indication that something was not right. The doctor reviewed the ultrasound and said we needed a Level 2 Ultrasound because something was not right with the baby’s brain. Instantly, my heart sank; fear and anxiety flooded in. All I could think was, “What does he mean?”
For two days, I cried, prayed, and begged God to make everything okay. I didn’t want fear and anxiety to rule my thoughts, but I found little peace. We were definitely not prepared for what we were to hear at the next ultrasound. The doctor explained, “Your child has a severe spinal defect, called Spina Bifida. It causes paralysis in the lower limbs and she will not be able to walk.”
I remember lying on the examining table, saying, “I can’t do it, I just cannot do it, this can’t be happening….” The doctor continued talking, but all I could focus on were the words “she will not be able to walk.” The doctor offered an abortion, which my husband quickly turned down. I was so grateful for his strength and support that day and in the months ahead.
For weeks I grieved, cried, and asked God, “Why.” I poured out my thoughts on paper: “God, why? You’re the creator. Did You not create this child? Why less than perfect? Did I do something wrong? Are You punishing me? My mind races nonstop, wanting to trust that You really do care and love me and this child, but I am not seeing (Your love). Why would You create perfect little feet and 10 little toes if they were never meant to feel, run, skip, or possibly even walk… Why? I don’t understand, God. I just don’t understand.”
Grasping for Hope
Over the next two months, I researched Spina Bifida and explored our options. Spina Bifida is the second most common birth defect after Down Syndrome and happens within 30 days of conception. The spinal column fails to close around the spinal cord, leaving a hole in the back and permanent nerve damage below the opening. In my research, I found a study that was exploring the benefits of in utero surgery for babies. After qualifying for the study, my husband and I signed waivers for enrollment and awaited the final decision, which was based on a random, computer-generated outcome. The options were: remove the baby from the womb at week 25 of pregnancy for surgical repair and return her to the womb, or carry the baby full-term to have back surgery after birth. I wanted in utero surgery despite high risks, because initial research showed some benefits.
I was holding onto hope that my baby’s diagnosis could change or at least significantly improve. When we were put in the post-birth surgery group, I again asked, “God, why,” and remained stuck wondering why He allowed this. I doubted God’s love and goodness, and I didn’t want to go to Him in prayer or spend time in the Word. I wanted to fix the problem, but there was absolutely nothing I could do.
Finally, at the encouragement of a friend, I went on a day retreat – time alone with God. Reluctantly, I poured out my heart and gave Him my hurt. That night, I read a chapter by Joni Eareckson Tada in the book, Praying Through Life’s Problems, that struck me in a profound way.
When a person is suffering… you’re like a child who’s been hurt and you turn to your big, strong father and say, “Daddy, why?” Now, I don’t think it’s very daddy-like for the father to look down at his child and say with cold detachment, “Well, child I’m so glad you asked that question. You see, my plan for you in all of this is ‘such and so’.” No, a child who’s hurt wants her daddy to reach down and pick her up and press her against his chest and say, “There, there, honey everything is going to be okay. Daddy’s here.”1
As I finished reading, I began to sob, “Here I am daddy, hold me.” In that moment, I realized my heart’s cry behind the “Why” was a desperate need to experience God, to know His Father’s heart, to receive His love and peace in a tangible way. I needed Jesus, not a list of biblical reasons why this was happening. I needed to know He was still in control, that He loved me and this child. As I turned to God, I felt His tangible peace and presence like never before. My understanding of God as a good father became personal; it moved from head knowledge to a heart experience.
The road ahead was not easy, but there was a significant change in my perspective. While nothing changed with Kayla’s diagnosis, I was able to lift my eyes from my temporary circumstances to God, His goodness, and His eternal purposes. I knew God was good. He had a purpose for my pain and a purpose for my daughter’s life. He loves her far more than I ever could.
Now almost 10 years old, Kayla has had numerous surgeries, starting with her back closure within 24 hours of birth. The doctor’s initial prognosis was incorrect and she can in fact walk with assistance. She wears leg braces and is known to use her walker more as a “runner.” She loves speed! Yes, there are challenges, but she is perfect, beautiful, and amazing in her determination and strength. She faces every challenge with grace and courage. She has impacted many lives, and this is just the beginning.
I have learned much these past 10 years. Most importantly, I’ve learned that it’s okay to ask “Why,” and that behind that question our heart is crying out to experience God as our Father. He answers by giving Himself, and He is a good Father. He alone defines what is good.
God’s perspective is far greater than mine – it’s eternal. Apart from a miracle, Kayla may never dance or run here on earth. But one day she will. I can imagine her in heaven with a look of delight on her face as she dances in the presence of her heavenly Father.
If you are facing a difficult diagnosis with your unborn child as I have, or if you are experiencing a crisis pregnancy, we can talk. Contact me at 952-224-3079 or firstname.lastname@example.org.
1 Stormie Omartian… (et.al.), Praying Through Life’s Problems, Integrity Publishers, Brentwood TN, 2003, p. 30.