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“We were the typical blended family–my husband, our three children, living the ‘American Dream’ of the modern world. When I found out I was pregnant with Marlee, to be honest, I was scared! I was on birth control and I didn’t think we could handle another child. I considered adoption in the beginning, but changed my thinking to the fact this child was a miracle. God knew my heart needed Marlee…
Growing up, I always said I never wanted to get married and have children. I wanted to be a cake decorator at Winn-Dixie, and my parents thought it was hilarious but kept encouraging me to be whatever I wanted to be! When we moved from South Carolina to Wisconsin, my dream evaporated (there are no Winn-Dixies here!) and I started to mature, but I never had this same type of calling and felt kind of empty inside. I was close to graduating and I still wasn’t sure what I wanted to do, so I didn’t go to college and waste money I didn’t have. At 18, I got married to my high school sweetheart and we started trying to grow our family because this is what I figured was the next step in life. I was 19 and I wanted a baby for all the wrong reasons.
After 6 months of trying to conceive and starting to become discouraged, I had a few symptoms and decided to take a test. I was pregnant! I was in bliss for 2 weeks until I started getting pain and spotting. When I rested it would subside, so I thought it was normal to go through in early pregnancy and spent a weekend just enjoying lying on the couch. A few days later, I was woken up at 1 a.m. from the pain and decided to go in since it definitely was no longer in the realm of ‘normal.’ After a few tests and an ultrasound, I was told I had a burst tube from an ectopic pregnancy and needed to be rushed to surgery. Everything happened so quickly, I didn’t have much time to process it. I remember waking up in recovery feeling lost and let down my body couldn’t do the one thing it was supposed to be able to do.
I lost sight of my beliefs and I was angry at God for it all. It was months of testing, at the end of which I was given a 12% chance of ever having a child. Even though I had turned my back against religion, deep down I prayed as hard as I could before every pregnancy test and cried at every negative. It was a year before I got pregnant again. I held my breath until my early ultrasound to make sure the pregnancy was not another ectopic. Once I saw the little jelly bean in my uterus, I figured it would be smooth sailing! Unfortunately, I had a miscarriage at 9 weeks; not a day went by that I didn’t wonder about who those babes would be and why I hadn’t gotten the chance to hold them in my arms.
It wasn’t until March of 2012 I found out I was pregnant again after months of failed fertility drug attempts and a failed IUI. In November of 2012, I welcomed my first daughter into the world! It was a crazy experience that ended in an emergency cesarean, but she was worth it. For a while, things seemed back on track and I felt I was continuing down the path I was meant to be on. Life events over the next several years brought about a lot of changes. I was not happy where I was in life, and I found myself a single mom going through college at 24. Once I graduated, I found a job and things were great. I was happy and in a stable position providing for my daughter and me. That’s when Jonathon came into my life…
We talked for hours every day for months! He was a single dad and had his life on a good path as well. We finally decided to meet and, as cliche as it sounds, it was love at first sight. When you know, you know! Life together was easy and full of beauty and laughter! It took a while for our daughters to get along and not push each other’s buttons, but we soon fell into a great routine. We started to discuss the possibility of having a baby together and I explained everything I went through to have my daughter. We decided to start trying right away in case it took a few years. To both of our surprise, 3 months later I was pregnant! This felt like a miracle since I had so much trouble conceiving my first!
Our son arrived in June of 2017 and our family felt complete. We moved into a bigger home and really settled into our life as a family of five! After a while, life started to become mundane and as the kiddos grew and things got a little difficult, I started praying for patience and guidance, hoping to gain the inner peace I used to have. In April of 2019, I found out I was pregnant. I was scared because I didn’t know how it could be since I was on birth control. I panicked at the thought of having another baby and considered adoption for the first few months. Jon always helped ease my mind and made sure I knew we could take on any challenge thrown our way.
My pregnancy went on as routinely as any pregnancy and we were excited to find out we would be welcoming another daughter into the family! I took my pregnancy for granted and felt guilty I had been willing to give up the life fluttering around happily in my belly. At one of my ultrasounds, the tech stated her legs looked a little shorter than average. I brushed it off and laughed as I explained our son’s legs measured shorter as well for a while and told her Jon and I don’t have to move the seats in our cars when we switch, even though he is a full nine inches taller than I am. He has short legs and is all torso! The tech and the doctor didn’t seem concerned since I wasn’t concerned.
At a few days shy of 38 weeks, I got into a minor fender bender and I was told to come in for some monitoring and an ultrasound just to be sure baby girl and I were okay. After the ultrasound, the doctor came in very somber and I feared something terrible had happened! She told me they were concerned my daughter had a ‘growth issue,’ and I could either drive to their specialty clinic two hours away for testing or wait until she was born to find out. I decided since I was so far along, I would just wait it out (and the thought of having a huge needle shoved through my stomach to do an amniocentesis made me nauseous). I brushed it off again because I thought back to our son and his shorter legs, but didn’t account for the fact her head was measuring several weeks ahead.
I didn’t have to wait long, because 4 days later, I was in labor. My labor was long, painful, and slow compared to my first two labors and births. Once it was push time, the doctor wanted to use forceps to get her head out and was being rude about it when I told her no. I didn’t realize it then, but this was the start of me advocating for what is best for myself and my children. After three pushes, Marlee was welcomed into the world, and as soon as they laid her on my chest, everything clicked and I knew. None of the doctors or nurses said anything to me until late the next morning. I had been enjoying newborn snuggles and had my mom visiting when I told her I thought Marlee had dwarfism.
My mom brushed it off, saying the same things I had to the doctors after the ultrasounds during pregnancy and a few days earlier and she was a beautiful squish (I mean, the baby rolls are pretty normal on most higher birth weight babies). The on-call pediatrician came in a bit later, and the first thing she said to me was she was sorry, and they thought Marlee had achondroplasia. It was a whirlwind of information and being told their specialty hospital would be calling me to set up an appointment in their genetics department. I didn’t sleep that night as I dove into Google, reading anything and everything I could about achondroplasia and dwarfism. I found Little People of America and learned so much on their facts page! We were sent home the next day and a few days later set up an appointment for Marlee when she was 3 weeks old.
The day came and we drove in the icy, cold weather to the hospital for their genetics specialist. In that hour and a half appointment, they went over all of Jon and I’s family history, and then information about achondroplasia. They didn’t tell me anything I had not already read a few weeks prior and told us, ‘See you in 6 months.’ On the ride home, I just felt defeated and I decided to pray for more guidance. The next day I had a burning feeling in my gut, and I decided to pull up the LPA website because I remembered seeing a medical board list, and I found a doctor who was only 3 hours away from us! I called her and left a tear-filled message, not sure if I would receive a call back since it was a cold call to a new clinic without any sort of referral.
A few days later, I got the call that changed everything for Marlee’s care. Peggy talked with me for 45 minutes and answered all of my questions and concerns and I learned more from her in that time than I had in weeks! We set up an appointment for a few weeks later on February 10th to have some routine testing most children with dwarfism have done. We did a quick MRI, a sleep study, and the next day I finally got to meet with Dr. Legare. She was the breath of fresh air in my uncertain world. She gave me so much information and made sure I understood what we talked about and she had an appointment set up a few hours later with a neurosurgeon to explain all the testing results to us. It was not what we expected, and because of the severity of her symptoms, on Valentine’s Day, Marlee underwent her first spinal decompression surgery at just 8 weeks old.
Marlee is 16 months old now and has since had a handful of MRIs, three sleep studies, and a second spinal decompression at 10 months old. Throughout all of this, I have found she has made me a better mother, a better advocate, she has shown me I have more strength than I give myself credit for. I have learned so much from her as she is learning how to navigate her world and figuring out her own way of doing things. She amazes me every day with her determination, silly antics, and the dimples she has when she smiles melt my heart!
Marlee has given me the confidence to do things I never thought I was capable of. I am in the process of speaking with several big-box companies about offering adaptive clothing for the Little People community. I want a better world for not only my daughter but all of those who have come before her and those to come after her. Marlee may not have been the one to make me a mom, but she has made me a better person. She was the miracle I never knew I needed; together, we will be able to conquer any challenge, and I can’t wait to see what our future brings!â€
This story was submitted to Love What Matters by H. Patterson of Eau Claire, Wisconsin.
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