My name is Faith Haire. My husband, Branden and I have three amazing children. Our youngest child is our only girl . . . our angel, Roselyn. We were all so excited to finally have a princess in our home. However, I don’t consider my pregnancy and the months following her birth to be anything like a fairytale. From the beginning, my pregnancy was high risk and at only 17 weeks along I was placed on strict bed rest. My husband took over managing our home, caring for our two boys, working full-time and driving me to my many doctors’ appointments. Things were very stressful, but our baby was growing. Results from one of the ultrasounds showed that our baby had hydrocephalus. We were told that she would need surgery once she was born to place a shunt in her head and drain the fluid surrounding her brain. Results from another ultrasound showed that my placenta had implanted in the wrong place and a hysterectomy would be needed during delivery in order to completely remove the placenta. My husband and I were crushed that this would be our last pregnancy and yet filled with joy that our baby girl would complete our family. My final weeks of bed rest were spent in the hospital, and at 35 weeks it was time for delivery. We could not wait to be done with hospitals and doctors. Soon I would be able to walk again and care for my family and of course our newest baby girl. We could finally see light at the end of the tunnel and we couldn’t wait to get back to ”normal”. Roselyn’s delivery was scheduled for January 28, 2008. My husband says the delivery day was the best and worst day of his life. The best day because I survived a major surgery which we found out later almost took my life; and the worst day because something was seriously wrong with our daughter. She struggled to breathe, she didn’t cry and she barely moved at all. Surgery for the hydrocephalus was put on hold while a series of tests were performed to find out what was wrong. An NG tube was placed for her feedings since she didn’t root and had only a rare and very weak suck. As I look back on the weeks that followed Roselyn’s delivery, they seem to have blurred together now. I remember spending every minute I could in the hospital to be near her, to be near the nurses, the doctors, and to hear the news as soon as it came . . . the news that my baby would be okay.
Four weeks after she was born we received her diagnosis . . . Zellweger’s Syndrome, a rare genetic and terminal disease. Certainly not the news we were praying for. We were given a list of common symptoms associated with Zellweger’s which included among other things, lack of muscle tone resulting in an inability to move, hearing loss, vision problems, kidney abnormalities, enlarged liver and failure to suck or swallow. Roselyn had all of these symptoms. We were stunned and the hope I had held onto in my heart that the doctors were wrong had died. Zellweger’s is a spectrum disorder with symptoms affecting many organs of the body ranging from mild to severe. Unfortunately, Roselyn was diagnosed with the most severe form and death was usually caused by respiratory distress, gastrointestinal bleeding or liver failure. We were told our daughter would die within a few months. I don’t remember what was said right after that, I just know that our world fell apart. She was our last baby, our first baby girl and now we were going to watch her die. All I wanted to do was take my baby home, love her, care for her and hold her for as long as God would let me. The doctors agreed it was time to bring Roselyn home under the care of Hospice. Roselyn would always need an NG tube for feedings and an apnea monitor. Adjusting to our new lives with our precious delicate daughter was a whirlwind. I hated having to change her NG tube. I was terrified that I would set her feeding pump at the wrong rate, or that I didn’t have her head positioned just right so her airway would stay open. So many times she stopped breathing and so many times I thought I would have to say goodbye, all the while knowing I would never be ready. How do I say goodbye to my only baby girl? But Roselyn was a fighter and she showed me that everyday was a miracle. Eventually our family settled into a routine with the help of the Hospice team . . . . They were so amazing.? ?Soon Roselyn began to have seizures requiring a lot of medications; however, none of the meds ever controlled them. During her seizures all we could do was hold her, cry and many times get angry at the helplessness we felt. The seizures seemed to last forever and our hearts broke for her. We were exhausted, frustrated, broken, and we felt totally alone. We had been grieving the loss of our daughter since the day she was diagnosed and yet she was alive and we were caring for her. I was torn between my feelings of wanting to celebrate her life and soak in every moment I could have with her and the overwhelming sadness for the future I had dreamt for us, that now would never be. She felt so perfect in my arms and so peaceful snuggled against my heart. I was content just holding her all day long and letting life happen around me. I didn’t understand how my heart could feel so much joy at the same time it was breaking. We searched for other families who had living children diagnosed with terminal diseases; someone else who might be experiencing similar feelings. However, I could not find anyone. I found families who had already lost their children, but no one who was loving and caring for a child they knew was going to leave them soon. Although we were told that Roselyn would die within a few months, we made the most of everyday. Monday through Friday her schedule was booked. She had speech therapy, physical therapy, massage, visits with her pediatrician, geneticist, neurologist, the hospice nurse and best of all therapy at the Foundation for Blind Children. We were treated like family at FBC and it was an honor to have the opportunity to get to know the staff, the parents, and all the beautiful children who attended the Foundation. They will forever be a favorite part our memories of Roselyn.
The days flew by. Some days Roselyn seemed so alert and strong, it was strange to think that she was eventually going to get worse and die. Our beautiful days turned into months, 8 ½ of the best months of our lives. Roselyn was perfect in this imperfect world and on Sunday morning October 12, 2008 she gained her angel wings. We were blessed to hold her in our arms as she took her last peaceful breath. Along with our sadness of having to say goodbye we were humbled to know that at that moment, Roselyn saw Jesus who welcomed her home with loving arms. Our baby will no longer suffer with crippling seizures, for she walks in heaven with her lord. Our family gathered in our home that morning to celebrate her new freedom in heaven and a sense that her short time on earth touched so many people who knew her.
I miss being her mom. I miss the sounds she used to make and the way she smelled. I miss holding her and hearing her breathe. I even miss changing her diapers. I don’t miss that feeding pump, but I would do it again in a heartbeat, for the rest of my life, if only I could. I miss her cute little hands and long fingers and her sweet ballerina feet. I miss the way her face would relax and look so peaceful when I caressed her baby soft hair . . . I miss my daughter.
Branden and I look forward to the day when we can see our precious daughter, hold her again, and for the very first time see her beautiful smile and hear her sweet voice say “I love you Mommy and Daddy.”
In Her Memory,
Faith Haire
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