It took me a while to write this…

I can’t rewrite this again, so I just copied and pasted it (I wrote it shortly after all events took place):
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.

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4 thoughts on “It took me a while to write this…

  1. Tricia,My prayers are with you and with Ping. Rachel Grace was so beautiful. Such a tiny little angel,I pray that you can find comfort in God during these hard times. While you might not know the answers today about why God chose to have Rachel living in His Kingdom, I pray that you can find peace and comfort and know that she lives in your heart forever and ever. xoxo Mel

  2. I don't mean to sound cliche but you really are an inspiration. May you continue to find peace and comfort in Him, who is Peace and Comfort. You have a perfect angel watching over you and Ping.

  3. My heart hurts for you, Tricia. I read the Runner's World women's board and when I read about your loss, I had no idea what to say. I know that words are fairly meaningless right now so I am sending warm hugs and prayers to you instead.

  4. Hi Tricia – I found your blog on Runner's World and this entry brought me to tears. I miscarried twice last year and while neither the circumstances nor the outcome is the same, I feel that some of the emotions are – and your writing triggered some of them for me. My condolences to you and your family, and you are in my thoughts.

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