‘Is there something wrong with her head?’ Matt insisted on an answer. He bowed his head in prayer. I held his hand tight.’: Mom loses daughter to anencephaly, ‘Rachel made me a better person. She is safe and I will see her again.’

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“On August 4, 2010, my husband Matt and I went for our routine 19-week ultrasound with our 4th baby. From the beginning, I had a lot of concerns about this baby. I worried about things I had not worried about with the first 3. I would see kids with disabilities and feel deep down that my baby had something not right. During the weeks prior, I had been awoken from 3 different dreams. In each of them, I had been told at the ultrasound that my baby was going to die and the entire dream was about my reaction. They were so vivid and felt so real. I had a miscarriage between our 2nd and 3rd babies, so I chalked my unusual fears up to that. Still, I remember telling my mom on the phone that morning before we went to the hospital, ‘I have a very bad feeling something is wrong with this baby.’ In my mind, I had decided it was probably Down syndrome.

Photo by Kelly Roy

As we settled into the scan, the tech asked me, ‘Is this going to be it for you?’ I smiled and replied, ‘If it’s a girl, it is.’ We talked about how happy Desirae, who was 7 at the time, would be. Within a few minutes, she congratulated us on being done having kids and told us, ‘You’re going to have a very happy big sister at home… It’s a girl!’ I cried tears of joy as I told Matt, ‘I can’t wait to tell Des!’

Photo by Luke Smith

Within moments of all of that joy, the air in the room shifted. The tech got quieter. The measurements being repeated again and again. Matt was watching closely and asked, ‘Are you having trouble measuring her head?’ She didn’t look up from her screen, just replied, ‘She is just dancing all over the place so I’m having trouble getting her to sit still for it.’ I laughed and joked about how she was a little dancer who liked to dance just like me. As the minutes went on, we started to realize this was very different than scans we had in the past. The tech was not chatting anymore and she was still trying to measure her head. She wasn’t showing us the profile shot we all leave those scans with. ‘Is there something wrong with her head?’ Matt insisted a response we didn’t really want. ‘I’m going to let the Doc explain that to you.’ And as I looked to Matt for reassurance, knowing that was not a good sign, I saw his head bowed in prayer and I just knew my worst fear was coming true. But at the same time, I had absolutely no idea what my worst fear was. I held his hand tight and began praying but I had no words so I just trusted my sweet husband’s plea to the Lord and said, ‘Whatever he’s praying, God, I join in his requests.’

By God’s grace, we had an appointment scheduled right after the ultrasound so the tech handed us a picture of our little girl’s foot and said, ‘That’s all I can give you.’ As we walked out of that dark ultrasound room, we took each other’s hands and walked down the empty hallway in silence. I finally looked at him and said, ‘This is what He was preparing me for.’ God had been so close in the weeks leading up to that scan that I knew in that moment he was making sure I knew where to go with my impending pain.

We sat in the waiting room at the doctors, which was in the same building, and stared at the pictures. ‘I don’t care what is wrong with her, I just don’t want her to die. I hope it’s Down syndrome. What could be wrong with her? Why won’t they tell us? Please don’t let her die.’ And that’s when I realized my worst fear was not disability, my worst fear was not being able to keep her. I would take her in any possible condition, I just wanted her.

Photo by Kelly Roy

They called us in and the doctor sat down and told us, ‘This baby has anencephaly.’ I had never heard of it before so I mustered up all my courage and said, ‘She’s going to live, right?’ The doctor looked at me and said words I will never forget… ‘These babies don’t live.’ And then she went on to say that we could set up our appointment to ‘Talk about my options’ and when I asked what that might be, she responded, ‘termination.’ I immediately said no and she handed me a box of rough, thin tissues and left the room.

The physical response I had to that news was only a small picture of what my heart would go through over the next 4 months as I carried her as close as I could to her Christmas Day due date. I completely lost all composure and screamed and thrashed around that room like I myself was being killed. And in a way, a part of me died that day in that room. I was never the same again. I just kept saying, ‘Not my girl… not my girl…’ But it was my girl and, according to the doctors, there was no hope. We left the hospital and I asked Matt, ‘What are we going to do?’ Without a pause, my brave husband said, ‘We’re going to give her a name.’ We already had one picked out, and so Rachel Alice it was. Our 2nd little girl. Going home that day and watching Desirae spin around proclaiming ‘I have a sister!’ until I had to stop her and break her heart with the prognosis and watching her little smile turn to tears was one of the worst things I’ve had to do.  Often we forget how much our kids have endured with us, but they have walked this with us and sadly, felt grief I don’t understand – the grief of losing their mama for a while.

Photo by Kelly Roy

The next day we went to Maine Medical Center for a 2nd opinion and met a doctor who would become the only doctor I ever fully trusted. I didn’t like him that day, but who likes a person telling you that your baby has no chance at life and that it was just ‘bad luck’? As the weeks went on and I encountered more complications, like polyhydrominos (excessive fluid) Dr. Pinette helped me make hard decisions to get me closer to the medical results I was hoping for – just a little more time with Rachel. I chose to have an elective c-section in hopes of meeting her alive. But that didn’t come easily, because insurance didn’t find it ‘medically necessary’ and so it was just another battle I had to fight.  Everything was hard. Everything was scary. My best options were ones I hated the thought of.

The next morning, I sent out an email to family and friends. I couldn’t stand the thought of having to tell everyone individually and I also felt super fragile to what I might get for responses. I stayed up late and wrote this in pencil and then transferred it to an email and hit send. And that was it, it was really happening.

Where do I begin?

 

We had our 5-month ultrasound yesterday and went to Maine Medical today for a 2nd opinion that confirmed that our new baby girl has a rare condition and will not live long after birth. I will be able to carry her to tern, but unless God performs a miracle, she won’t be able to live outside my womb. Our hearts are broken, and yet we can see how God has prepared our hearts for this trial. We believe wholeheartedly that He can heal her and are praying relentlessly for that truth to be ours.  But we know that might not be what He does. As much as we don’t want to drink of this cup, we are surrendering to whatever He wants to do through this.

Our desire during this time is that we can celebrate her life even in the midst of our sadness and cherish the time we have with her, however limited it may be, until we see her again in heaven. Please do this with us. We do not want to act as if she is already gone, when she is not. She is beautiful (pictures coming soon!) with a healthy beating heart and apparently loves to dance, just like her Mama. We want to focus on these things. Her name is Rachel Alice, which has a very special meaning to us, that I’m sure you’ll hear someday hear about.

If you’re wondering how you can help, these are things we need.

 

PRAYER

– ceaseless prayer for Rachel’s miraculous healing

– that if she isn’t healed, that she’ll live through delivery and be able to come home from the hospital with us

– strength for our family, and special prayer for Desirae who so desperately wanted a sister

– for God’s provision in costs associated with preparing a funeral and strength to do that

– preparing my heart to be healing physically from childbirth, without a baby to hold.

– for timing with labor to make it possible for family to be with us, especially my mom and sister, and for wisdom on how to handle the baby’s arrival with our kids

– that we will continue to see God moving and be able to praise Him in this storm

– protection from Satan’s advances during this vulnerable time

 

SUPPORT

– lots of hugs – we favor these over talking details. They are less draining and more helpful

– we may need some childcare for Dr. apts.

– no info from internet (part of the reason we are not discussing the name of condition)

– any and all encouragement from God’s Word that He gives you for us so that we can stay firmly planted in His truth.  The Word of God speaks…

 

Thank you so much and we love you all,

Matt, Stacy, Desirae, Isaiah, Samuel & baby Rachel

I began writing a blog that next week. I wrote every day for years. In the beginning, they were short – only a few words. Gut wrenching. Reality hitting. But the journey with Rachel continued, something I didn’t see possible, started to happen… beauty. Her story ended up in the Foster’s Daily Democrat… over and over! Thousands of people began following my journey with her and I answered hundreds of emails every week from people who were inspired and encouraged by my faith in God and my love for this little girl, regardless of what was different about her or how long I was going to be able to keep her. As time went on, my writing got longer and I not only realized how therapeutic my writing was, but also that I had a gift with words and for the first time in my life, I knew I was making a difference.  People who had lost babies, were considering a new or renewed relationship with God, or were struggling with loneliness were reaching out because they were captured by my willingness to be vulnerable – and I was able to encourage and comfort them in my pain.  Every day I was reminded how important and how meaningful Rachel’s life was and it kept me going. Our community rallied around us, prayers were answered, God spoke so loudly in the silence and loneliness. People gave of their time and their finances to ease our burden in ways that they could. I was daily brought to my knees in thankfulness as I walked through the most horrific pain I have ever felt. I learned it was ok to not be ok, I didn’t have to be perfect, that time is precious and not to waste it, and there is great blessing in obedience to God’s call on my life.

As my polyhydrominos got worse and more painful and threatened early labor more, I made the hard decision to deliver Rachel at 37 weeks and on December 3, 2010, she was born via c-section and lived for 43 minutes in our arms. We had a few select people at the hospital, including her big siblings and we had a cake and sang Happy Birthday to her. I tried to do all the things I would wish I had the chance. We took pictures and hand and footprints and I spent the night cuddling with her. The next day, the funeral home came to pick her up. I got her dressed and bundled up and tucked her into the Moses basket they had for her.

Photo by Kelly Roy
Photo by Kelly Roy
Photo by Kelly Roy

Saying goodbye that day and letting someone else leave the hospital with my baby was excruciating. So much so that when I was supposed to leave the next day, I asked to stay another night because I couldn’t bear the thought of going home without her. Two days later, I did just that. And two days after that, we had a beautifully, well planned service for her and buried my baby on a cold winter day.

Courtesy of Stacy Aube

We had a baby shower for Rachel when I was 7 months along. Over 85 people came and celebrated her life with us that day. We asked for donations to a memorial playground in lieu of presents and were generously blessed with over $1600 that day. I talked to her every day and I told her that I was going to build her a playground – and that day, the plans began to roll. I felt so proud. I felt like she was proud.  With the help and generosity of Learning Structures in Barrington, NH, and the continued donations and support of multiple fundraisers, we raised enough money to fund a big Ark playground that we gave to our church in exchange for a place to build it. We opened it 5 months after Rachel died, on my first Mother’s Day without her. It was beautiful but the way everyone came from near and far to help was what really brought a smile to my broken spirit.

Courtesy of Stacy Aube
Courtesy of Stacy Aube
Courtesy of Stacy Aube

Before we knew we would have enough for the playground without it, it was suggested that we hold a 5K to raise money and so Baby Rachel’s Legacy 5K was born. We held them annually on the anniversary of Rachel’s diagnosis for Anencephaly Awareness and in doing so, we were able to support local ministries close to our hearts, and I met a handful of other local mamas who also had babies with anencephaly. Two of them I was given the honor of being there to meet them at the hospital. One of the truest, most beautiful honors I’ve ever been given.

Courtesy of Stacy Aube

As I write this today, I am sitting in my home with 3 of Rachel’s older siblings and THREE of her younger ones! Having her changed my entire perspective on children and on my well-laid plans for them in my life. The picture perfect 2 boys and 2 girls was not what God had in store for me. It was better. And it took losing Rachel for me to know that. I had 2 more boys and another little girl in the 5 years after she died and every day I am thankful for them. Our family talks about Rachel every day. She is here with us in so many ways. Often I feel very alone in missing her because nobody else knew her like I did. I often wonder how I can miss someone I barely knew so much – but I do and it’s not bad. It’s only because I love her so much that her empty space in our family is so tangible. I feel it when any of my other kids are not here, especially for special occasions, so it only makes sense I would feel the same about her. I’ve learned to be ok with the fact that I’m not going to have others with me in that. They also didn’t get to experience the amazingness of her like I did. I hate that it happened, but I honestly wouldn’t trade it knowing what I know now.

Photo by Jackie Lipsky

December 3 of this year was her 9th birthday. And I was caught off guard, yet again, by how hard it hits me. I cried a lot this week. I felt physical pain from my sorrow. But I made it special and I made it through and that’s sometimes the best I can do. It’s not the same daily pain it used to be, but I have accepted that it’s not a pain that will go away this side of heaven. In the deepest valley of my life, I have experienced the most beautifully painful moments.  I’ve learned so much about myself, life and God. I am not the same girl who walked into that ultrasound on August 4, 2010 and you know, I wouldn’t want to be. Rachel made me a better person. And I truly believe she’s done that for thousands. She is safe in the arms of our Savior and I will see her again.  Until then, I am thankful for the story of her and for the honor of being part of it.”

Photo by Jackie Lipsky

This story was submitted to Love What Matters by Stacy Aube of New Hampshire. You can follow her journey on her blog, Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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