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!
