“I met my husband in 2009 when I was just 17 years old and in high school.
After seven years together and our first born, Carmen, he popped the question. We were so busy with life and raising our daughter that we never really got around to planning anything or setting a date.
In May of 2018, while on a family vacation, we spontaneously decided to get married. We had literally two days to work something out together before we would say, ‘I do.’ After scrambling around, on May 4th, we finally tied the knot and we were truly bonded in the best way. But nine days later, I felt strange and sick.
I rushed to the dollar store and bought two pregnancy tests. One just in case the first was a dud. A few seconds went by and BOOM. There is was. A positive pregnancy test! I was scared at first. We hadn’t planned on having another baby anytime soon, but at the same time we were excited to have a sibling for Carmen to play with. The age difference was perfect.
Weeks went by and everything was pretty normal. I didn’t feel nauseous with Carmen, but this time around I was pretty sick. Besides that, nothing was out of the ordinary.
On July 19th, we found out we were having another little girl! Daddy really wanted a boy but was just as happy with another princess. We thought and thought about names but couldn’t agree on one. Until one day we were watching a show and we saw a Dahlia. We thought it was just so beautiful and perfect. The perfect name for the perfect little girl.
Carmen was a high-risk delivery due to her heart rate dropping and her swallowing most of the amniotic fluid around her. I had to have an emergency c-section. So, with that experience, we elected to do another caesarean.
It was so simple. We had everything planned out. We felt we had nothing to worry about. On December 26th, 2018, I woke up at 3am to get to the hospital at 5am. Upon arriving, I checked in. We were so happy to finally see my little one! There were emergencies before me so we didn’t go into surgery until around 10am. Just forty-five minutes later, Dahlia was earth-side!
They took her, weighed and measured her. Then, I heard the nurses speaking to each other. I felt in my gut something was wrong. She was limp and blue. My heart broke when I heard them say she needed to go to the NICU. All I could think was, ‘Not again.’ All I wanted was my baby back. I wanted to be like all the other moms who get to cuddle and snuggle their baby after they were born.
After a few hours, my husband came in and said he had a surprise. Trailing behind him was a nurse and she was holding my Dahlia! I was so happy that she was back with me.
But after about ten minutes, she was bluish and once again taken from me. Little did was know she would be in the NICU for a long time.
Her doctors noticed some abnormalities about her. After three days, they ran some tests. And on January 12th, we got a call that her chromosome test came back. ‘She has 5q14.3,’ we were told. We had no idea what that meant until we googled it. Immediately, our heart’s broke. 5q was a small deletion on her 5th chromosome. It meant she was missing a piece and, therefore, a lot of important genes, mainly one called mef2c.
The deletion causes low muscle tone, epilepsy, delay in eye contact, delayed development, and an array of other things. She was now our special needs baby. My heart felt like it was shattered in a million pieces. How could this happen? How was this fair? Was this my fault? We later learned that the deletion occurred randomly during fertilization.
Dahlia spent almost three months of her life in the NICU. The whole time she was there, I had a rough time getting a grasp on life and how quickly everything was changing. I cried constantly for her. I felt so bad that she would have to live this way. It just wasn’t fair.
The day we were told she could finally come home, I was excited yet nervous. During her stay, she needed a gastronomy tube placed directly into her stomach so she would be able to eat. Her airway was very critical. But she was stable now. We brought her home and I still struggled with the thought of her being handicapped. I sought out help and her pediatrician suggested we go be inpatient for medication and assistance.
She was very irritable and never happy. So, we packed some things and went to the hospital. Our plan was to stay about a week and go back home. Unfortunately, that didn’t happen.
Somehow she caught the rhinovirus. A common cold to anyone else. Her health declined so quickly. For three nights, we had to have a team come in and give her extra help. One night, we thought she was gone. She almost flat-lined. I screamed and called for someone. ‘Help us! Someone please help us!’ She was rushed to the PICU and got successfully intubated. But her team wasn’t confident with her airways.
She sat in the PICU for a week before we decided the tube could come out. We had a party to celebrate her the day before. We didn’t know if she would be able to breathe on her own. But we made sure that she was as ready as humanly possible to breath on her own before it came out.
The moment her tube came out she went purple. We thought we we were losing her, but a miracle happened. She went stable. Next, were told she would be moved to the non-intensive care unit for a few more weeks. Our baby kept proving time and time again how strong she was.
Although she seemed to look better to me, her doctors told us she has a big chance of not making it. Her little body just couldn’t handle her being so sick. I didn’t give up though. I pushed and pushed and demanded that they didn’t give up on her. Then came the day that she was ready to come home! I was ready. I had moved passed the grief of disability and was just ready to have her home again and enjoy her.
Before we left they told us again that this syndrome is too hard on her body and her chances of having a long life we’re very slim. We weren’t going to give up hope though. She was the strongest person I have ever known.
Things were going great at home. We went to the park, we went on car rides, I rocked her to sleep. We napped together and she loved when she was cuddled and kissed by mommy, daddy, and big sister. I got a hang of her round-the-clock tube feedings and medication. It became second nature to me. Then, one day she got very sick.
She was feverish and clammy. I called her nurse and she rushed over. After some evaluation, it was determined she had pneumonia. Our hearts sank. With medication and care from her nurses and doctors, we were hoping for another miraculous recovery. Unfortunately that didn’t happen this time.
She declined rapidly. We knew her time was near. We had our whole family come and visit her. The next day, around 3:30 in the morning, her dad and I held onto her while she took her last breathe. It was the worst day of my life.
The day she passed was the day I lost a chunk of my soul. We knew she would have a short life but that didn’t help us one but with the grieving. My baby, my child, was gone and there was nothing I could do.
My mind still races with the pain and thoughts that haunt me everyday. I often find myself asking god, ‘Why? Why did you chose us to endure such unimaginable pain?’ I don’t think I will ever understand why.
Prior to Dahlia’s passing, we had signed up for a pay-your-age ticket at Build-A-Bear for our girls to be able to do together. The day she died was the day we got the email that we had won the tickets for our girls. I waited a few days before I asked if we could still use it for my girls even though one was now my angel baby. I explained how she unexpectedly passed the day we received them. It felt like the perfect thing to do in order to honor and remember her.
Build-A-Bear responded. They said we couldn’t. A simple no would have been okay with me, but their words felt like a stab to the heart. They told me I couldn’t because ‘the guest must be present’. That was their response when I told them my daughter passed. Their words shattered me. I chose to not respond.
Then, I started getting notifications and comments on the post. Then shares. People began messaging me. Somehow people got wind of their response and came to my defense. Eventually, Build-A-Bear reached out to me via Facebook and their CEO called me to apologize how the post was handled and offered to have Carmen come in and make a special bear for herself and Dahlia. But honestly, after everything that happened, the bear lost its meaning to me.
Our Dahlia is such a special girl and was a light in our life. Not matter what the doctor said, she pushed and pushed and proved them wrong. I’m so proud of her. Although my heart breaks and aches for her every second of every day, I do have some comfort in knowing she isn’t struggling anymore. She isn’t in pain. She is free.
We love you Dahlia and I await the day until I can see your beautiful face again.”
This story was submitted to Love What Matters by Ashley Guevara of Knightdale, California. You can follow her journey on Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
Read more stories like this:
Do you know someone who could benefit from this? SHARE this story on Facebook with family and friends.