The summer of 2011 brought a great surprise—we were pregnant! Due on April 4th, this would be our third child. We had just suffered through two miscarriages and weren’t sure if we wanted to try for any more children so this pregnancy seemed like a gift from the Lord; something special He had given us when we didn’t even know to ask for it. The pregnancy seemed fairly straightforward until a car accident in the beginning of the third trimester landed me in the hospital. The accident was a minor one and I just went in on the order of my OB for routine observation and an ultrasound. Everything checked out fine except that the ultrasound showed that my amniotic fluid was high. So, I checked out of the hospital and headed to Orlando for a high risk ultrasound. Three ultrasounds, 12 NSTs (non-stress tests) and ten weeks later, my fluid remained high so I was scheduled for an induction at 38 weeks. On March 21 I checked into the hospital at 7:00 in the morning and at 9:19 PM, my sweet Aerin Elizabeth was born.
She was beautiful. Lots of light brown hair, big blue eyes, long fingers and...silent. She didn’t utter a sound. They laid her on my chest where she practically flopped, her muscles not strong enough to hold her arms and legs in. It was apparent from the beginning that something was not right. She didn’t cry, she hardly moved, and she had difficulty maintaining her body temperature, so the nurse took her to the nursery to put her under a warming lamp and to watch her. She came back about an hour later and we tried to nurse, but she couldn’t even close her mouth much less latch on. Six hours later, she still hadn’t eaten from the breast or the bottle, so a nasal gastric tube was placed to give her food.
Five days later, she still wasn’t able to eat more than a few mls at a time orally, so she was transferred to another, larger, hospital nearby and placed in the NICU. One night in the NICU there and she stopped eating from a bottle altogether. The next day, the doctor told us that there was something wrong with her brain and to take her home and make her comfortable. He explained that she would probably never walk, never smile, and never talk. The mommy tiger in my came roaring out--how could he write my daughter off like that without any information! He hadn’t done any tests but an ultrasound of the brain. He offered no other alternatives, no hope. I immediately demanded that she be transferred to Winnie Palmer Hospital for Children and Babies, a state-of-the-art hospital about an hour away from us in Orlando. So, when Aerin was five days old, she took her second ambulance ride to her third hospital.
Augie and I arrived at Winnie Palmer a couple of hours after Aerin and were able to meet with her neonatologist right away. He had completed a full assessment of Aerin, explaining that her major issue was hypotonia, or low muscle tone. That explained the lack of sound, movement, eating, and even the high amniotic fluid (her ability to suck and swallow was severely diminished, even in the womb). The cause of the hypotonia, however, was still unknown. He explained that we would proceed with her plan of care in two ways: start testing to see if a cause for the hypotonia could be established (i.e. look for a diagnosis) and to start addressing her immediate needs for nutrition and strength.
Leaving Winnie Palmer that first night, we were able to breathe for the first time since she had been born. The doctors and nurses there just radiated hope. Hope that we would find answers and hope that we could be able to get Aerin what she needed to fulfill her potential, no matter what the diagnosis might be. The first night also was the beginning of a 21 day journey through doubt, uncertainty, fear, exhaustion and, ultimately, faith.
We moved in, with Kaelin and Aiden, to the nearby Ronald McDonald house and spent our days trading off being with them and being with Aerin. We sat at her bedside while wonderful physical and occupational therapists started working with her to stimulate her muscles and her ability to eat. We sat waiting to talk with doctors who were narrowing down hundreds of possible diagnoses that ranged from metabolic syndromes, to muscular dystrophies, to genetic disorders. We made plans with surgeons for a gastric tube to be placed so that we would be able to take her home and still give her proper nutrition. We walked her down to surgery and watched her come out limp and unable to breathe on her own, a breathing tube down her throat.
And just when we thought we honestly could not take any more waiting, any more unknowns, or any more tears--a diagnosis arrived. The geneticist came to see us (I’ll never forget, it was Friday the 13th of April) and explained that Aerin’s microarray test results had come in and that there was a deletion on her fifteenth chromosome. She had a rare genetic disorder called Prader Willi Syndrome.
And in that moment, my world became still and silent. The weight of that diagnosis hung on me, crushing the air from my chest. Prader Willi Syndrome--the disorder where you have to lock up all of the food. That was about all I knew of it at that moment, but my mind flashed forward through the next five, ten, fifteen, and twenty years’ worth of family dinners, birthday parties, wedding celebrations, picnics and holidays. I thought of all of the ways we gather in fellowship around food and of how all of that would be different (impossible???) for her and for us and for her brother and sister. All I could see were the giant mountains that stood before us with this diagnosis and my heart just broke. I just cried rivers of tears for all that my little girl would not be, for all that she would not do, and for all of the pain that lay in her future.
And then I sat, silent, while the statement bounced around in my head and my heart: “I am the mother of a special needs child.” This had always been my greatest fear. Way back when we discovered the high fluid and knew that it could be indicative of several different disorders, that was the fear that grew greatest in my heart. In no uncertain terms was I ever going to be capable of caring for a special needs child. I could barely get through each day as it was, struggling with my own internal mixture of impatience and worry and fear.
But there’s a part of this story that I haven’t told you yet. You see, Augie and I believe in Jesus Christ as our own, personal Lord and Savior. We have been Christians for many years, walking with Him in good and bad times. We are blessed with believers throughout our extended family and with a wonderfully loving and supportive church family. We knew that Aerin was a gift from God from the beginning and throughout our entire ordeal since her birth, we were hedged in by prayer from all of those who loved us and many more who didn’t even know us, but loved us because of the cross. Those prayers carried us through each day in the NICU as we received the daily mercies promised by God. They calmed our desperation and grounded us in His hope.
Don’t get me wrong. There were definitely times that Augie and I both struggled with God over this. I was angry and tired and frustrated and He was always there, so He bore the brunt of my pain. But He is almighty, and He withstood it, and He carried me through it anyway.
So, that night we went to sleep while a new vocabulary ran through our heads: Prader Willi Syndrome, genetic deletions, food compulsion, insatiable hunger, human growth hormones, apnea, and on and on and on. And we woke up. And Aerin was there, in the hospital, still waiting for us. Our precious gift from God. Syndrome and all, He created her just for us. Honestly, we still don’t understand why (and probably won’t on this side of heaven). But we look at her and know that, however much it might have thrown us, this didn’t surprise God one bit.
So now we are home and living out His plan for her and for us one blessed day at a time. We still struggle. We don’t know what the future looks like: how quickly will she learn how to eat? How will she progress through her physical therapy? How severe will the syndrome manifest itself in her little life? How will God keep our family together through this? How? What? Where? When? Why? Why? Why? We still live with more questions than answers. But from the very beginning, we prayed that the Lord would use Aerin to glorify Him. So we know that, no matter how hard or easy, or how fun or challenging, each day is--each day with her belongs to Him. Through her, He will be magnified and we will all be better (more like Jesus) for it.
And our greatest hope lies not in this world or in this time. Someday, we will be with Aerin in the Lord’s kingdom and we will all be able to sit at His banqueting table. She will no longer be hungry. Our tears will all be wiped away. And we will all be His--forever.