Roses for Rachel, Managing the Death of a child; a Story of Remembrance

This has been one of the hardest posts to write. Therapeutic–yes, but still very hard as the pain is still so fresh, and the topic so near and dear. Please be patient with me as I stumble through my heart in an attempt to express what my soul longs to share.

Rachel Jessica Beyer was one of God’s blessed Angels sent to grace us with her presence, change our lives and all too soon return to our Heavenly Father before we were ready to let her go. In Honor of National Prematurity Day, Rachel and The Golden Sky Blogfest, this post is dedicated to those who have lost a child no matter the cause.

 

My Sister may tell this story a little differently, but as far as I can remember, she has always wanted to be a Mother. Especially a mom to a little girl. I specifically remember when we were younger we would hang out in her bedroom in the basement, as we so often did growing up–she was my best friend when we were kids, I always wanted to be with her. We would talk about life, school, boys, books, girl things and names we would give our future children. I could never stay with any one name for very long; because at that time I still wasn’t sure if I really wanted to be a mom. Kids scared me! I am the youngest of nine children, I was always forced to babysit crazy and wild kids that I couldn’t stand and I really wasn’t sure about that whole “species” of humans and if I could handle them. But my sister…she always knew! She’s my hero; I’ve always idolized her. As far back as I can remember she had two names that she just loved and wanted to use when she finally got her own little girl/s…Rachel and Jessica.

Time went by; and we grew up. She got married in January 2001. The plan was that they were going to take a full year to enjoy being “newlyweds” and then try to have children. About 6 months in, my sister was done waiting. Like I said; she always KNEW she was to be a mom! My Brother-in-law was a little more hesitant; but after a cute little girl with beautiful blue eyes came and sat on his lap one day in church and smiled at him, he was hooked and agreed to start trying for a baby.

It didn’t take long for them to become pregnant; but the Lord had other plans. At the 20 week appointment it was discovered that my Sister miscarried; the baby had died at 15 weeks. Several months later and after much grief and pain; My sister was able to become pregnant again…only to miscarry again at 7 weeks. I shared in my sister’s pain at this time; as we were pregnant at the same time; due in the same month and miscarried around the same time as well.

Finally after 2 miscarriages, lots of medical advice, and Clomid ; my sister became pregnant again and this time she didn’t miscarry! She was considered High Risk and started having Braxton Hicks at 20 weeks. With Medical help and bed rest; she was able to prolong the pregnancy. But on the morning of Nov 25th at 33 weeks; she went into labor. She was taken to the University Hospital where they had an amazing NICU Facility. Samuel was born first, followed closely behind by Rachel. It was no surprise to me that this beautiful little girl was named Rachel Jessica! I was only slightly irritated that my sister (where AGAIN we were pregnant at the same time; with a due date in the same month–who was actually due AFTER me) had just given birth BEFORE me! But I blame this stupidity on the pregnancy hormones that happen when you are in that 3rd trimester and you are going stir crazy–ready for the beautiful little miracle to be OUT of your stomach and in your arms! I say Stupidity; because it was stupid. I honestly wouldn’t wish the scare of a premature baby on even my worst enemy! The day to day life of not knowing if your child will survive or when you will be able to take them home, or if there will be lasting health issues…the list goes on and on!

Sam and Rachel were both on oxygen for awhile. Feeding consisted of holding a syringe with tiny amounts of expressed breast milk that would flow through a nasogastric tube directly into their stomachs. Each feeding consisted of a diaper change, temperature check and a once over by the nurse. Both Sam and Rachel progressed. They were able to hold their body temperature, were taken off of oxygen and eventually the tubes were removed.

Sam<—->Rachel

They had setbacks; but finally after 3 weeks my Sister and Brother-in-law arrived at the hospital one morning to learn they were going to be allowed to take Rachel home that day! Sam was not ready to be released yet and it about broke my sister’s heart to have to leave him at the NICU while they took their baby girl home. But finally 5 weeks after their birth, they were able to bring Sam home and be together as a complete family. I was thrilled for my sister. Plus I was selfishly thrilled that we would have kids the same age who could grow up being close friends, as my Jonathan was born just a few days later.

Sam<—->Rachel

Sam and Rachel grew up as best friends. They were always together-playing, coloring or reading. These kids were BRILLIANT! I remember visiting around the time that Sam, Rachel and Jonathan were about 3 years old and there Sam and Rachel were listing off shapes such as Trapezoid, Octagon and Hexagon and pointing to the CORRECT shape! Rachel loved her books! She was always asking for a story; and they both loving Signing Time (an educational American Sign Language program designed for kids). And they both were full of hugs for their Aunt Amber when I came to visit. These little babies were so easy to love!

A While ago my Sister wrote a little memoir of Rachel; and I would like to reference part of it now; as no one can describe a child better than their own Mother;

Rachel was the little mommy of our household. When we were teaching Sam and Rachel to say their prayers, Rachel always felt the need to help Sam say his. Sometimes this became a problem when Sam didn’t want help. When her baby brother was born, she was insistent that she be able to help feed him, change his diaper, and hold him. She loved to play with him and keep him happy. She was a great helper to me when I was tired. Sometimes her stubborn nature would exasperate us when she didn’t want to do something she should or when she got it in her head that she was going to do something she shouldn’t. However, she was also the child that wanted the most cuddles. Most mornings, she wouldn’t wake up until she had had her morning cuddle.

Rachel was always willing to try new things. She loved to try new foods and was always the first to climb the big toys at the park. She loved to learn, and as a result she asked some deep questions that we sometimes struggled to find the answers for. Rachel loved school and was doing very well in the first grade. She made new friends easily.

My Sister has since added to their family with two more boys, the youngest of which…yes…AGAIN; we were pregnant at the same time, and had our babies within the same month. Rachel sure did love being “mommy’s little Helper”, and was always trying to help her brothers do things the right way. She also had a special spot in her Daddy’s heart. They had their own special things they’d do together. There was this one book that my Brother-in-law would read to Rachel; because she loved it. Now it is cherished as Rachel’s book. Or how my Brother-in law would always sing Billy Joel’s Lullaby to Rachel at night.

During the 5 years my husband was in the Army and we were stationed in Germany and then Kansas; I would Video call my sister often on the computer and we’d talk and let our kids see each other and talk. Oh I absolutely hated being so far away from my sister. Rachel was always the sweetest thing; as she would stay right where the camera could always see her; and tell me stories, or show me her babies and tell me how she wanted to be a Mommy when she grew up. I even remember one time she was furious with my sister because Rachel wanted to “feed” the baby, and by feed I mean nurse like my sister did. But my sister had told her she couldn’t and Rachel was so angry because her mommy wasn’t letting her take care of “HER” baby!

To our amazement, Rachel never really ever got sick. Sure she had the occasional cold, but nothing that showed long term effects of being premature. On December 13, 2010, Rachel had her tonsils removed because of their large size and the thought that she may have sleep apnea because of them. She had a slightly complicated recovery because of her stubbornness. She didn’t like the pain medication, so she wouldn’t take it. As a result, she had more pain than was necessary, but had recovered well and enjoyed a wonderful Christmas with her family.

On December 27, 2010, Rachel began complaining of a headache. My Sister thought she was dehydrated, so she tried to get her to drink as much fluid as she could. By evening, she had started vomiting and was in a lot of pain. My Sister and Brother-in-law decided they would watch her closely that night and if she wasn’t better in the morning, they would take her to the doctor. At 4 in the morning on December 28, 2010 my sister took Rachel to the ER.

She had been dizzy and couldn’t stand on her own. Her skin color was off, and I could tell something was not right. When we put her in her booster seat, she was limp and slumped over. I drove as fast as I could to the hospital talking to her the entire way. When I got her out of the car, she was not responding anymore. When I got her inside, she was unconscious. I watched as they took my little girl and started CPR. I think at that time I got an inkling that it was not going to end well. She was not breathing, and her heart rate was very slow. They intubated her and gave her shots of epinephrine every two minutes. After a very long 45 minutes, the doctor came to me and told me that there was nothing more they could do and that my only little girl had died. 

I awoke that morning and saw the news about Rachel from my sister. I was in Shock. I couldn’t believe it! I thought I was having a nightmare and couldn’t wake up. This couldn’t be happening! It was too sudden! She was just fine! She couldn’t be gone! We had plans to go visit in just a few weeks as soon as the roads were clear and safe to drive! How could Rachel not be here any more?

A few days later when the Autopsy came back it was discovered that Unknown to anyone she had been born with an abnormally small spleen. Over her short 7 years of life it had deteriorated away and could no longer function properly. Somehow, Rachel had contracted Streptococcus pneumoniae–one of the few infections that is fought primarily by the spleen. Since her spleen was not functioning, her body could not fight the infection, and it spread through her entire body very quickly. It was approximately 15 hours from the time of her first symptom to her death.

It has been a long road this last year, coming to accept Rachel’s death. I still slip up at times and get excited to share with my sister the newest girl Fashion accessory I created that I just KNOW Rachel will love (because she did..she really liked what I made and I loved hearing how much she loved them); only to remember she’s no longer where I can hear her and find myself in tears. That is how our accessory line of Roses for Rachel was started; I had an idea I just knew Rachel would love, and now I craft each one with her in mind.

At other times, when I’m talking about my Sister’s children I find myself saying “Sam and Ra…..”

It has always been “Sam and Rachel”, how can we just take Rachel out of that?

They say the first year is the hardest; and I’m sure hoping so, because I don’t know if my entire family can handle anything worse than what we’ve gone through this last year. Through all of this, my sister has been my rock. I don’t know how she is so strong, but she is. I feel so guilty that I struggle so much; when she is doing so well, after all it was HER child, not mine that was lost. Although I love Rachel, I can’t profess to love her as much as her own Mother does. I know my sister doesn’t think she’s strong, but she is. She truly is and I love her dearly. Time has helped to dull the pain; but truly the support of family and loving friends have made the real difference in healing. I know we all still have a long way yet to go; but we’ve almost reached the 1 year mark and can say “The Worst is behind us!” We know our Heavenly Father needed his sweet Angel back, that her work on this earth was finished, but she is greatly missed here. We love her and look forward to the day when we will be with her again after this life.

View of the Valley from Rachel’s headstone

Rachel was buried in a quiet country cemetery in our hometown in Wyoming on a Hill over looking the entire valley. It’s a beautiful place, and she is surrounded by very special family friends whom we loved while growing up who have passed on; and by my oldest sister who also recently passed away this last year. She is also just a few minutes away from my Parent’s home, and two of her Uncles and many cousins that still live in the area.


Rachel is survived by her Mother, Father, 3 brothers, both sets of Grandparents, and a Vast number of loving Aunts, Uncles and Cousins.

Helpful Resources for coping with a Death of a Child

In all struggles; one of the greatest comforts is knowing where you can turn to find strength and support. I’d like to share a few with you that we have found in hopes that it may help you in the future.

Preemiebabies101.com
A community of parents and family members who have gone through the struggle of having preemie babies. They share their stories, lift and encourage each other. Developed by a life long friend of mine who also had more than one Preemie baby-one of which did not survive.They can also be found on Facebook and Twitter.

The Sharing Place

Many also fine Comfort through Music. You can learn more about what one special composer is doing to help those grieving for a lost child at the Now I Sleep Project

There are also many books you can find of other people’s stories that have gone through similar situations; preemie births, loss of a child, etc that you can read and draw on to help you find perspective and hope. The most recent of these I’ve read is The Golden Sky by EC Stilson.

You are welcome to share any more helpful resources you may have for those who have lost a child or are suffering from similar circumstances below!