Reese's Story

My daughter Reese Elizabeth Black passed away after 15 days of life due to a terminal illness called Zellwegers. I decided to start a blog in honor of her life and as a way to keep her alive even after she went to heaven. Maybe this could also serve as a place to raise awareness of rare genetic diseases as there not many resources out there for people like me and my family. Lastly, I think this will serve as a place where I can be honest and spill my feelings as I try to cope with this burden I have been chosen to bear.  

Reese Elizabeth Black
11/21/13 @ 5:21 pm
6lbs 8oz 

You know, no one prepares you for what might go wrong with a pregnancy. No one ever thinks something bad is going to happen to their baby. I may have thought about things at the beginning of the pregnancy but in no way did I ever think anything bad could ever happen to MY baby. Millions of people have babies and they turn out just fine. Most of my life, actually all of it has been pretty easy going and everything has always worked out. Nothing bad had really ever happened to me and I was lucky enough to have two amazing parents and a good upbringing. Everything was always fine...until it wasn't. 

The day that we went to the hospital for our scheduled induction we were so happy and excited and nervous. We had all of those same thoughts most parents have of what their life will be like when they bring home their baby for the first time. We thought about her first Christmas, her first time meeting family, her new baby room we prepared, we thought about lazy Sundays, and play dates with little friends. We had dreamed and planned with excitement for nine months and it was finally coming to fruition. 

I cannot express the sadness and how much my heart hurt when the doctors told us that Reese would not have the same life as other babies. It is like a 180 in the wrong direction from everything that you dreamed about. The doctors thought she had Down Syndrome and detected a hole in her heart and told us she would have complications and needed to be flown to the Children's Hospital in the cities immediately. It’s like the whole world just stopped moving. My heart felt like it was crushed into a million pieces. I honestly felt like I was in a really bad dream and I wanted to wake up soo soo bad. This cannot be my life!!! This cannot be happening to me and my family!!! Why my baby, why me?

When they come to take your baby away on a helicopter it is very intense and fast and scary. They are rushing all over and attaching tubes and regulators to your baby. They tell you to make sure to hug and kiss your baby and get a picture before they leave. This was the hardest part for me because those words to me meant that I might never see my baby again. Those words to hold and hug and kiss and take pictures with my baby cut like a knife. (I may never see my baby alive again.) Tears…that’s all I can say as a way to explain watching my baby go in the helicopter. I am crying as I am writing this now at the thought of it. Nothing can ever prepare you for something like that. Having to let go of your child…

Right before Reese had to get onto the helicopter and our first family photo

When she arrived at Children’s she was put in a wing of some 80 other babies all needing love and care just like Reese. Children’s is a completely different world and one that you never think you will ever have to enter. All of the nurses are angels and so nice and caring. Reese was immediately looked at by many doctors and hooked up to tubes and wires and machines to monitor her. Walking in to see her for the first time since she had gotten to Children’s was overwhelming. Trying to be happy for the life that you just created and gave birth to and also so heartbroken and scared all at the same time was a whirlwind. I don’t think I have ever felt so many different emotions ever at once.

The time in the hospital with Reese was my most favorite. We sat next to her all day every day. We talked and talked. We read books and sang some songs. We held hands and looked into each other’s eyes. We were connected, we were mother and daughter, I was in love. I have never instantly and so intensely loved something that much ever. It is a love that is so pure and innocent and true and cannot be explained in words. My Reese was awake and playful and full of life. She added a light to the world.

My little Chub :)

Daddy and his girl

snuggling tight :)

The day that we were told of Reese’s true diagnosis is a day that I don’t like to remember. I get an icky feeling in my stomach even thinking about it. Around five doctors walked into the room and immediately told us that the news was not good and that we should sit down. I remember sitting down on the bench and waiting for words to spill out of their mouths. They said that Reese has Zellwegers and that she would have seizures that would increasingly get worse as she got older. At this point I was devastated, but I still imagined her growing up. When the doctors explained more about the disease they regretted to tell us that most children with Zellwegers would not live past 6 months to a year. My mind could not process this news. I immediately started to sob harder than I have ever sobbed in my life and probably the hardest I will in my entire life. The doctors kept saying they were sorry and that it is so rare. They even started to cry with us, they could feel our pain and heartache. Like I said, I hate remembering that day. Having to tell our families about Reese and the rest of the world was extremely difficult. We were not the only ones who had hopes and dreams for Reese. We were not the only ones excited for her arrival. Like I said, I hate remembering this day. Having to try to eat and sleep and function like a normal person while knowing that your child is extremely sick and will not have a long and prosperous life. Like I said, I hate this day. Holding your baby tight, kissing and hugging her while sobbing knowing that you will not be able to have her here your whole life. Knowing you won’t be able to make all the memories you thought you were. Knowing she won’t be around and you will have to let her go…

In the days that followed my husband and I decided a few things. We decided that Reese would be baptized and become a child of God. We decided that even though we had been given this extremely harsh reality, we would try to smile and laugh around Reese. We did not want Reese to remember her time with us as only tears and crying. We wanted Reese to hear us laughing and happy and as hard as that was we decided the only way to do that was to literally “live in the moment.” We decided at this point in time to not focus on the past or the future but enjoy our baby girl right now, right here in the moment. People tell you that all the time and there are many songs that talk about living like you are dying and cherishing every moment but until you actually have to live it do you know what it truly means. We realized our reality would be different for our baby girl and we had to make the best of the really crappy situation we had been given. Not many people get the blessing of having to “live in the moment” but we did. Everything becomes so precious and wonderful. Those few days in the hospital before we came home were my favorite memories with Reese. Reese was so awake and happy. She would smile and move her little hands and feet. She was a light literally making everything bright and happy. She was the most precious baby girl and I was literally so in love. She stole my heart, every part of it without even trying. I was her mommy and we shared a special bond.

Reese all dressed up for the first time. She was baptized later that day

Reese's baptism 

We decided that we would bring Reese home and spend as much time as we could with her there before her illness would take over. We had wonderful moments as Kato (our dog) got to gently lick Reese’s head when first meeting her. We were able to watch movies (Mommy and Daddy’s favorite) and read books. Reese got to share one of my favorite things to do in the whole wide world, setting up the Christmas tree. Reese also got to wear some pretty bows in her hair and hats on her head as well. Reese was a beautiful baby girl that from the outside looked like a normal little girl but on the inside was deteriorating.

After 3 days at home Reese passed away in my arms. She was so peaceful as she went home to heaven. I didn't even know that she had stopped breathing. There was no struggling at all. I truly believe Jesus came and said Reese you are home with your parents and you have given it your all here on earth and now it’s time for you to come home. No more pain, no more suffering. As I sat there with my lifeless daughter in my arms I just kept thinking that I don’t want to let her go. I felt that if I let her go then it was real, then she really was gone. If I just kept holding her maybe it wouldn't be true. As we held Reese in our arms hours after her spirit had left for heaven I couldn't help but feel she took a piece of me up there with her. I would and will never be the same person ever again. I now no longer hold everything that I love. A piece of my life, my mind, and my heart are gone and will never be replaced and will never be healed. The hardest part was to give Reese over to the funeral director. It was the first time we had been separated since I was pregnant. To be separated like that was so painful and unbearable. In the midst of such a dark reality I was able to see that God did answer my prayers. Every day since Reese was born I would ask that God not let her suffer or feel pain. I feel that if Reese would have kept on living there may have been suffering. Reese would no longer have to suffer here on earth with her illness as the seizures would have gotten more severe with time. Of course the selfish side of me would have wanted Reese to stay forever.

The world does not stop with you when something like this happens. It keeps spinning while you are standing still. Funeral arrangements, medical bills, etc. all had to be dealt with right away. There was no time to really inhale all that had occurred. The visitation and funeral were planned a few days after Reese had passed. My husband and I were so scared for each as we knew that we would see all the people we loved and that loved Reese. The visitation and funeral were so sad but yet so beautiful and to our surprise we actually were thankful for these events so that we could talk about Reese and brag about her as parents. She was an amazing little girl who had only physically met a handful of people but yet there were so many people there to support us. We were so proud of our little girl that had touched so many lives.

As I look back at the funeral and the time right after Reese had passed, I almost wish I could go back there because I felt so close to her yet and felt surrounded by people that shared in her memories. The time that is really hard is the time when you are alone after things have settled down. Everyone goes back to their lives and you just stay in this confused and sad place. The living with her gone part for the rest of your life is the real ache in your heart. How does a person do that?? How would a person keep moving forward even though they have had both of their legs cut at the knees? Why did this happen to my family? How come it had to be my baby and my life? Why? These unanswered questions are the ultimate torture moving forward. It is the unanswered questions that haunt me.

For right now, all I know is that I would repeat those days with Reese, the highs and lows, all over again. I would put it on repeat and keep playing it over and over. They were the best and worst days of my life. The only things that keep me moving forward now are the memories of Reese that I carry everywhere I go and God. Reese is the reason I get up. She is the reason I can still do things. She is the reason I am able to still laugh. She is the reason I can smile. She is the reason I want to be a better person. I talk to Reese everyday, whether in the shower, while i'm cooking, or in the car just like any other mother would do. We talk about my day and I ask her about hers. I am a mother and always will be regardless of where Reese is. She is mine and I am hers…Forever! I cannot wait until I am able to spend all my days with her in heaven and get to catch up on all the things we missed out on here on earth.

My beautiful girl (those eyes <3)

Mommy and Reese-Love at first sight

I love you Reese’s Pieces and I will see you again someday!