I have never written about this. I have talked about it, but I have never written it down. I think it is time I try.
On November 16, 2004 our daughter Reagan Noel was born. She came into the world with her tiny arm up by her head and her hand curled into a fist. My first thought was , "Yes! She's going to be a fighter!" We knew she had Down syndrome and would have some health conditions as a result, but we had no idea what they would be or to what degree. We had prepared as well as we could, including mourning the loss of the daughter we thought we would have. At times I was over-whelmed at the idea of caring for her and unsure of my ability to do so.
At first she seemed to do so well. She was bigger than we anticipated for her early birth. She was soon breathing with regular oxygen and off the c-pap face mask. She seemed to be eating well. She stole the hearts of all who cared for her.
On Thanksgiving that year, November 25 we were enjoying a wonderful meal provided by our friends, the Montgomerys, when we got a call from her Dr. letting us know that she was doing great and she was breathing on her own! She had been moved to the "graduating NICU". What a gift...we believed she would be home for Christmas for sure!
That Friday night as we visited her, she was wide awake. Her Down syndrome made her very sleepy as her heart was working overtime so seeing her beautiful dark blue eyes was a rarity. But as I laid her in her bed to leave for the night she was staring at me. I knew she knew me. She knew I was Mommy. Maybe she knew she wouldn't be here much longer--maybe she was saying "I'm sorry, Mommy. I wish I could stay. I love you". I like to think so.
Then the next day, on Saturday when we went to see her, we knew something was wrong. Kian was only one and so I felt I had to be home taking care of him too and I was torn everyday about what my priorities should be. I knew that Reagan was being taken care of and I knew that a one year old needed his Mommy. So it was later in the day when we got to the hospital, about 4:00. After a little while we could tell there was something wrong. She was making these tiny little noises. At first I thought it was so cute, I hadn't heard any sounds from her before. But Doug confirmed that something seemed "off". The nurse didn't seem to think anything was wrong at first but by 6:00 she was x-rayed, by 7:00 we were talking with a surgeon, by 9:00 she was in surgery. Everyone seemed fairly hopeful, we were even told to go to dinner while they got her prepped and we'd be back in plenty of time to see her into surgery.
When we came back at about 8:30 we went into the NICU to see her and my world stopped when we walked up to her bed. The nurses turned to look at us with a stunned, OMG look and I saw her feet were black. I didn't understand why, but I knew what I saw and I knew it was bad. They put us in a small room to wait for them to come and talk to us and we prayed. I knew as soon as Doug began praying that she was not going to make it. She had NEC--
http://www.nlm.nih.gov/medlineplus/ency/article/001148.htm and it had progressed to perforate her bowel.
I thought the surgeon would come back in the first hour to tell us the news, but he didn't. It took 2 and a half hours. I was beginning to believe I was wrong and that she was going to be OK. But that was not to be...the Dr. came in and unfortunately he was extremely terse and aloof when he gave us the news that her heart had stopped and she was on a breathing machine. That is when I realized the definition of a broken heart.
We knew we would have to turn off the machine. But I could not let her go...I wanted to hold her forever. My world stopped or at least I wanted it to. Doug made sure to give her a blessing and a name. Denny and Sara Downs seemed to show up from nowhere and their support was invaluable.
From then on we had amazing support. Mark Starnes who had lost his nephew to cancer, planned the entire service and went with Doug to the funeral home and cemetery. I have no idea how they did that. Patty Montgomery made a beautiful dress for her. Kim gave her booties from her grandmother. Kami Starnes sang at her service. I don't know how she was able to do this. Nicole and Kim went with me when Sara Downs and Marcia French went to dress her for burial. For some reason I felt I needed to be there and I am so grateful. After she was smoothed with baby lotion by Marcia's tender hands and her hair was done by Mark, I held her in my arms and told her how much I loved her and would miss her. She was beautifully dressed in her "Going Home" clothes as Mark called them. The Holy Spirit was so strong in that room, it was peaceful, not sad and as I held her she smiled. I know it is unbelievable, but we all saw it and we were amazed. I felt it was a gift from my Heavenly Father letting me know that she would be waiting just for me and that she loved us.
For Christmas just one month later I got a Hilary Weeks CD and this is the last song...what a blessing it was for me. Never has a song spoken more loudly to my heart...THANK YOU Hilary. You have no idea how much comfort I felt when I heard your voice. He will carry me, but I needed to be reminded of that. I needed to know that other have felt this same sorrow.
I don't know why she was born with Down syndrome. I don't know why she was taken back so soon. She was such an unexpected gift and Kian would have REALLY loved being a big brother and would have been wonderful with her. Why does he have to miss that? I do know that my Savior loves me and I will probably spend my whole life wondering why this happened. But He knows me. He gives me peace and hope. He knows my sorrow, He hears my heart.
I am so thankful for the gospel of Jesus Christ that promises me that I will be with her again. I am and forever will be her Mommy. She is ours forever. She is perfect and she is with our Savior and she is watching over me. I miss her every day and having to leave her tiny body in Indiana has been a new heartbreak for me. I remember wondering once how in the world the pioneer women could lose their children on the trek to Utah and go on to their destination, leaving their precious gifts behind...now I know. You have to, you have to go on. I know that she is not there. She is in our hearts forever, her spirit is with the Lord
I loved you
then I lost you
and I will never be the same.
Caught in your eyes
lost in your name
and I will never be the same.
Reagan Noel
November 16-November 28, 2004
