I carefully lifted baby Makayla out of her car seat, marvelling at the trust her parents must have had to leave her in the nursery. She was 12 days old and probably weighed less than eight pounds. At 12 days old, I was still struggling for life, hovering just under two pounds, having lost weight after being born prematurely.
For most of my life, my premature birth was something abstract. I could not comprehend it. I knew that I weighed two pounds and two ounces; but just how big is a baby weighing two pounds and two ounces? I knew that my parents drove once a week from Mississippi to Baton Rouge, LA, to peer at me through the glass. How would it feel to relate to your child in this way? Part of me thinks, "At least they could see me. At least they knew how I was growing." Another part of me says, "But they wanted to hold their daughter, to kiss her hair as they now kiss their granddaughter..."
In 1994, I took a physics class and held a one-kilogram weight in the lab one afternoon. One kilogram is equal to just over two pounds. I studied the weight, about two inches high and perhaps as round as a quarter. What would the weight feel like if it was shaped like a baby ... if it was a live baby?
In 1998, I became active on email lists for parents of premature infants--preemies, as they've become known. I recall a discussion on one of these groups in which some of the mothers talked about coming home from the hospital and taking out packages of meat to cook for dinner, only to put them away after they realized the meat weighed more than their child did. I went into the kitchen and held a 1-1/2-pound package of ground beef in my hands. Babies weighing less than this survive routinely now.
In 1999, I sat with a friend as she viewed the Website belonging to a friend of mine who is the mother of quadruplets born at 23 weeks. "I'm having trouble with these pictures," she said, gasping. I asked her to describe them. She laid out a magic marker and said, "This is how long the baby is." The baby was my friend's child, born at 23 weeks, and had since grown to a 20-pound two-year-old.
In July, 2001, I received a phone call from J.J., the children's ministry director at my church. Would I pray for a family whose daughter had been born at 26 weeks? Of course, I would. J.J. kept me informed about the baby's progress until I met the family several weeks later. She talked to me about going to the hospital to see her. "Her head is the size of an orange," she told me. It was my turn to gasp.
As Makayla wriggled happily in my arms, I could feel her tiny arms and legs. I touched her hands, so perfectly formed; and I tried to imagine that she was smaller ... much smaller. How fragile she would be! How fragile I was! Yet now I am an adult. I am the same size as my peers. For the most part, I have the same abilities.
Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God.
Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. (Romans 5:1-5)
Premature birth has left its mark on my life. So has my heredity. I live with more than one disability. In some people's thinking this means that I have a lowered quality of life. In my thinking, it all depends on how one defines quality of life. I certainly don't have a corner on suffering. In fact, I'm glad that I have the freedom to suffer--and to grow and to experience God's mercy and grace. Without my suffering, I would have no need for God, no desire to know the One who made me.
Not only does my suffering bring me closer to God, but I believe it can also be used to bring others closer to Him. There is nothing new about this thought. Gaining "inspiration" from the lives of other people is an age-old phenomenon. This is why we read Anne Frank's diary and are moved to make our own lives matter. It is why the Psalms are precious to so many people--and what more are the Psalms than David's cries of anguish, his attempts to know God?
This is my story--my psalm. I pray that it may bring glory to God in the lives of families of people with and without disabilities; for it isn't just a story about disability. It is a story about growing mature in my faith, about my life coming to revolve around something outside myself, something bigger than my disability ... something worth living for.
This chapter is excerpted from the e-book, Growing Strong. The full text is available from Sarah Jane's for $5.95.
If your child was born prematurely, please browse the preemie resource page.