Bess Malek's words (Audrey Joy's Mom)
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Life is full of choices.
Some are small and seemingly insignificant- swept into a corner to gather meaningless dust. But many a choice hold within them the elements of life or death, light or darkness - joining hands to shape and color futures.
The writer of Deuteronomy knows this to be true: "I call heaven and earth as witnesses today against you, that I have set before you life and death, blessing and cursing; therefore choose life that you and your descendants may live.
" The day before Thanksgiving of 2004 we were given a choice. It was my fourth month of our second pregnancy and I was eager to hear the doctor's declaration of gender so that I could begin the process of draping the nursery in the appropriate color. This had been a much prayed over baby already. I had many times asked God's will to be done in our family as I hoped for another child. We sat in the doctor's office excited and fidgety, waiting for our ultrasound. A blood test had come back abnormal. "We have false positives all the time ", the nurses had reassured us. "You are much too young to have anything to worry about."
In my work in the neonatal unit as a pharmacist at Riley Hospital for Children, I daily encountered defective hearts, broken bodies and labored breath; so worry was an easy emotion to entertain. But I brightened at the nurses words, reminding my unsettled heart of my 29 years of good health and the unlikely potential of any problem. Upon seeing our child's form on the ultrasound screen I immediately spoke up. "Is the head supposed to look that way?" I spoke as I tried to discern the fuzzy shape of my baby. My doctor did not speak right away. I waited for him to address what was at present mild concern.
"I have terrible news for you. From what I can see there seems to be very little brain tissue in your baby. There are also many other deformities that I see. I think you have a child with a chromosome abnormality. I will have to send you to a genetic specialist. "
Suddenly I felt flushed and weak. My husband and I sat in unbelief - numb and stricken as we felt the weight of the Doctor's words. "But it is Thanksgiving ", I thought as tears streamed down my cheeks. My anguish grew as we visited the genetic specialist an hour later. The diagnosis was confirmed, fact sheets were gathered and hearts were broken. My baby - who had been bathed in prayer from before her conception - would surely die. She was diagnosed with trisomy 13 - a very rare chromosome abnormality that scrambles and disrupts all the beginnings of development. Thus leaving a human form so afflicted that life cannot continue for long.
We were given a choice.
A terrible one, as death waited on either end.
The succeeding days were attended by grief. I felt heavy and afraid. I stumbled through my emotions the next weeks as holiday cheer passed me by, unfelt.
As a follower of Christ, I believed in the sanctity and dignity of all life, and of God's sovereign foreknowledge as He knits His creation together. Yet this seemed an impossible burden to bear: to carry a horribly deformed child, endure the strain of pregnancy and the pain of labor, with the ultimate culmination being the anguish of death and loss.
A good friend spoke to me, "We know you love this child."
I was angered by the assumptions of this statement. How did she know what I felt? I was overwhelmed with fear and resentment, not with love. And was this a child? The form I saw was blind, deaf and paralyzed. We were told of extra toes and fingers, undeveloped brain tissue and extreme facial deformity.
How could this be the life within me?
My baby's fluttering movements within my growing stomach brought waves of sadness and nausea, rather than the wonder and delight I had previously known. I secretly prayed for a miscarriage. We had a window of time until January to make our choice: terminate the pregnancy or continue an already 'doomed' life.
Each doctor I encountered recommended terminating our pregnancy. Whether their view was spoken outright or implied, I was familiar with the often detached opinions of the medical community. Within my family, friends, church and co-workers I met with a range of responses. Some were endlessly supportive, others were insensitive or silent, and a handful in subtle fashion suggested the foolishness of continuing such a pregnancy. Also, my work at Riley took on a sudden and painful empathy.
Although I needed time and space to wrestle with God and grieve the loss, I knew in my heart what I would choose. Amidst the emotional upheaval and confusion, several recurrent themes stood out to me as I contemplated this choice. My sister had challenged me with the words:" You do not want to cut short what God has for you. You do not want to miss His purposes for you."
Then a friend reminded me of a passage of scripture that became very precious to me and sustained me through the next months. These words rang as a bell of hope in my heart: "Though the fig tree may not blossom, nor fruit be on the vine, though the labor of the olive may fail and there be no flock in the field; yet I will rejoice in the Lord. I will joy in the God of my salvation. For the Lord is my strength (my personal bravery) He will make my feet like that of a deer, and will make me to walk -not stand still in fear, but to walk and make spiritual progress in my high places of difficulty, trouble or toil." Habbakuk 3:17-19 (amplified version).
Finally God gave me a great sense of expectation as I continued to allow this little afflicted life to grow. Over the next days and weeks into the new year, I became excited about getting to learn about God in a new way, one I never would have chosen. I anticipated how I would see His hand of deliverance and wondered at what He might do as I trusted Him with my future and that of my child's.
The Lord showered me with His grace- through the lamp of His word, the wisdom and tenderness of my husband, the gracious ministry of God's people and the kindness of friends. We continued to meet with geneticists and endure discouraging ultrasounds. I did hope for healing and pray for a miracle. A great heart of love for my daughter grew, and I experienced a richness of thought and a communion with the Lord that I had never known.
As I neared the end of my pregnancy however, our circumstances became more grim. There were further developing neurological conditions, along with fetal positioning that rendered difficult decisions as we drew close to delivery. We had dilemmas and doubt over what would be best for my health and for our daughter. There were many unknowns - how long she might live and what care she would require, or whether she would even survive a difficult birth.
How would I feel when I saw this deformed life that came from my own? Did I even know my own heart? My sense of stress and anxiety grew with each appointment and ticking off of weeks.
Finally, after much prayerful consideration and many emotional meetings with my doctor, we planned to induce at 36 weeks in hopes to avoid a c-section. But I feared a long, arduous labor ending in a lifeless form, stripped of breath or warmth or beauty. My fervent request of the Lord was that He would clearly have His hand upon the details of her birth, and that He would grant me time with my baby.
It was Easter week - March of 2005.
That Monday, we met with the neonatal doctor to ensure the necessary care was in place for our daughter's delivery, planned for the next week.
The next morning I awoke early, overcome with anxiety and a sense of abandonment by God. It was 5 am and I sat with my head in my hands, crying out to God, my tears falling on the open pages of Psalm 103. "Are you going to help me, Lord? Are you going to be present when I so desperately need You?"
I got back into bed. Soon after I awoke my husband and called my doctor. I thought I might be having contractions. I became fearful. This was not as we had planned. My doctor said he would meet me at the hospital and we would try to stop my labor. If my water broke, a c-section would be necessary. The intensity of my labor increased during the drive, and as I struggled along the long hallway of the hospital my water broke. I panicked. I knew this meant we needed an emergency c-section. Rushing to the triage section of the maternity ward, there was chaos as I tried to communicate the unique and uncertain circumstances of our pregnancy amidst my panic and pain. The nurse was still trying to get my name and personal information as it became clear my child was being born. An unknown doctor rushed in, and the NICU team was called. 8 minutes after entering the hospital and 1 hour after recognizing the first pains of labor, the long tedious wait was over.
My daughter had arrived.
Although it was intensely frightening, it was God's gracious hand of provision. He was present with me, and delivered me from my fears.
He granted me a mercifully quick delivery followed by 36 precious hours with a child beautiful for my eyes to behold. I got to rock my baby, change her diaper, sing into the silence of her ears, and above all to witness the amazing handiwork of our Creator even in the frail and fallen brokenness of a life.
The Lord was faithful and present in every detail. We named her Audrey Joy - the name meaning one of noble strength, and buried her on Good Friday, amidst the triumph of Christ's victory over death.
My Audrey, and the lessons I learned from her life, are among my greatest treasures.
The Lord was my Strength and He carried me over my places of difficultly and toil. I had a choice and it led me to the path of greatest life.
- Bess Malek, January 2007
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