I gave birth to little Rachel Grace on 1/3/10 at 25 weeks gestation. Rachel was diagnosed after birth with Jeune's Syndrome. A rare genetic disorder (affects 1:130,000 live births a year) that affects the long bones, especially the rib cage. Rachel was in the NICU and passed away on 1/5/10. This is the hardest thing in life that I have ever had to endure. I miss Rachel so much. I wasn't ready to see her yet, and when I did I wasn't ready to let her go. We moved to a new apartment 4 days before she was born. The reason why we moved, so Rachel could have her own room. I look at the empty room and just don't want to live here anymore. Too bad we are stuck in a lease. We chose this place specifically for her...the room, the washer/dryer in the unit (Difficult to find in NYC), the large roof top terrace for her to play on in the summer/warm days. Now, you walk in, our place smells like a flower shop, a huge pile of cards sit next the flowers that all are riddled with "we're sorry for your loss" and random bible verses that are supposed to give you strength in times of trial. Those words in the Bible right now, make me angry and don't give me comfort. My faith in God has been totally dumped upside down. Rachel got her first piece of mail- her social security card. I had no idea what to do with it. It was totally weird to see her name printed on an envelope. Rachel's memory box given to us by the NICU sits amongst the flowers. All I want to do is stare at it all day. I wake up every morning and wonder what am I supposed to do now? How am I supposed to go on in life when I've spent the last 6 months preparing for our daughter to join us 3 months from now? I dread facing the world- going back to work, answering questions from my students who loved Rachel just as much as Ping and I. I also think, What can I do to raise awareness regarding Jeune's Syndrome? A few of my friends did donate in Rachel's name to the tiny foundation that exists. My older sister is doing a book drive for the NICU that Rachel stayed at since when I was there I was not allowed to hold her (until she passed away in my arms) and they only had 3 children's books for me to read to her (which they had to spend a few hours hunting down). A strong part of me wants to get pregnant again right away, but I know that part is just trying to fill the void. I feel like I have lost the purpose in my life. How do I go one from here? How do I heal. I'm not crying as much anymore, about every few days. I blame myself for Rachel's death. I keep thinking, if I had just been more in tune with my body, called the doctor about the UPPER back pain I had a few days before, Rachel would still be with us. Everyone is telling me that it's not my fault. My doctor even says it's not. "That back pain I would have never pegged as labor, your cervix and uterus were just fine. It wasn't you that brought her here early." I still blame myself though. I know that if she had made it through she would have had 30+ surgeries ahead of her in life, one every 4-6 months to expand her tiny rib cage. And even then her potential of living until adulthood is grim. On top of that, the bleeding in the brain, who knows how that would have affected her quality of life. All I want is my baby back and that none of this ever happened. Here is a picture of our sweet Rachel as she passed away in my arms.
