“When I was just 17 years old, I met the love of my life. We fell for each other hard and fast, and my life hasn’t been the same since. We definitely had some crazy years full of ups and downs throughout our time together, but despite the hardships we faced, we always came out on the other side with a tighter bond. We now know those years would be nothing compared to the ones we were about to go through.
In 2013, my husband had been dealing with some health issues but he always just ignored them because we always seemed to be able to explain away whatever new issue came up. But in August of 2014, I got a call from him I could have never expected. ‘The doctor thinks I may have cancer.’ And just like that, my whole world stopped. I thought to myself, ‘Cancer? We are just starting our lives together, this can’t be it for us.’
After that call, we truly realized just how short life is, and how it can be altered in an instance. We knew getting married and starting a family was our number one priority so we went for it! On September 26, 2014, we got married in an intimate ceremony at City Hall surrounded by our immediate family followed by a celebration the next day with the people we loved the most. It wasn’t what we had envisioned but it was perfect for us.
After the wedding, we were so eager to start trying for a family but our dreams of having that family swiftly came crashing down on us. That October, my husband was officially diagnosed with Stage 4 Hodgkin’s Lymphoma. The day we got the news we may never be able to have kids is permanently burned into my memory. We were sitting there in the cancer clinic talking to his Oncologist (an experience I don’t wish on anyone), asking questions, finding out more about what his specific cancer entailed, what his treatment plan would look like, and so on. What we weren’t prepared for was the answer we got when we asked, ‘What are our chances of conceiving a baby before treatment starts?’ She replied with, ‘Zero chance, it’s impossible.’ The type of cancer he had and where it was located made it that way, or so we were told. We were both devastated, as it seemed like our dreams and our future had slipped out of our grasp in the blink of an eye. Not only did I have to worry about possibly losing my husband, but I was also mourning the loss of a baby and a family we didn’t even have yet.
That November, fate stepped in and gave us the best surprise of all. After feeling off, I decided to bite the bullet and take a pregnancy test. I mean, what did I have to lose? When I looked at that little stick and saw those two lines, I was completely shocked because it didn’t make any sense. I thought, ‘Maybe things are looking up for us after all.’ The next two months kind of went by in a blur. I had horrible morning sickness from sun up till sundown and was feeling beyond exhausted. Although, that was nothing compared to what Ryan was going through. He was living with cancer and dealing with all the side effects that came along with chemotherapy while simultaneously trying to take care of his newly pregnant wife. This was our new normal and although it was extremely tough, we knew there was a light at the end of this dark tunnel.
In January, we had our IPS screening to check for any abnormalities. With us being so naive about all things pregnancy, we never thought about anything actually being ‘wrong.’ A week later I got a call they had noticed something concerning and wanted us to see a genetic counselor straight away. We were told our baby had a thickened nuchal translucency, which could be an indicator of multiple chromosomal conditions. Yet again, the world froze and I suddenly knew our lives were forever changed. After I told Ryan the news, I lost it and spent the whole night just sobbing and trying to figure out where we would go from there. We didn’t even know if anything was actually wrong yet, so call it mother’s intuition or whatever but I just had this feeling deep down in my gut something wasn’t right. I felt like we just couldn’t catch a break. Why was this happening to us? What did we do to deserve so much heartache?
During our meeting with our genetic counselor, she informed us after assessing all of our risk factors, we currently had a 14% chance of having a child with Down syndrome. We had decided to go ahead with the NIPT to find out for sure. At this point, we had grieved, done our research, and had finally come to terms with the fact we might have a child with special needs. We felt as ready as we possibly could be for whatever news would come our way.
A few weeks later, we got the call that we had been expecting. ‘Ashley, I’m calling to tell you there is a 97% chance your baby will be born with Down Syndrome.’ Silence. ‘Okay… it’s okay, we were fully expecting this, we are okay.’ ‘I also see that you want to know the gender? It looks like you are having a baby girl. Congratulations!’ ‘A girl? Are you serious?’ We were elated and regardless of any other news, this is what we chose to focus on. It took our minds off of all of our stress, even for just a little while.
In May of that year, two months before she was expected to be born, I had to start attending multiple non-stress tests over the course of a few days due to some complications. After one particular nonstress test and an ultrasound, my doctors decided I needed to be admitted to the hospital for observation. It was determined my placenta wasn’t functioning properly and she wasn’t getting all the nutrients she needed to grow properly. This is not the news we were hoping for. I was admitted for 3 days and after much debate about whether I needed to stay there on bed rest until I was full-term or if they should induce me within the next few weeks, they decided to let me go home. I was told to take it easy and rest as much as I could.
I had already been going in for weekly ultrasounds and OB appointments prior to the admission due to being considered a high-risk pregnancy but then we also had to tack on weekly nonstress tests after I was discharged. Between Ryan’s appointments and mine, it felt like we lived at the hospital. We spent the whole last month of my pregnancy at the hospital for my appointments and Ryan’s radiation treatments, all while preparing for the arrival of our sweet girl.
After a rough pregnancy journey full of twists and turns, a lot of pain, and a lot of heartache, I was finally induced the night of July 6 and admitted 24 hours later. We were beyond ready to meet our daughter. Labor was relatively uneventful minus an epidural mishap and after 12 hours of labor, in a room completely packed full of doctors, nurses, specialists, and med students, I delivered the most beautiful 7-pound, 1-ounce baby girl on July 8, 2015. Olivia Grace entered the world quickly and fiercely, and my whole world just shifted. The moment she was laid on my chest, I felt this overwhelming sense of peace, like I just knew everything would be okay. She had a head full of dark hair and the most beautiful almond-shaped eyes. She was perfect. She was our rainbow after the darkest storm and she fit in like the missing piece of our puzzle. She was everything that we never knew we needed.
After the birth, she had an in-depth echo and it was discovered she had three holes in her heart. Since these weren’t an immediate threat to her health, we were able to wait 6 months before needing to be seen by Cardiology again. Since she was so healthy, we were able to go home earlier than expected and finally start our lives as a brand new family of three. We never officially announced her diagnosis online because that’s just not what we wanted people to focus on at first. Instead, we just continued on with things as normally as possible. After all, her diagnosis didn’t define her. To us, she was just Olivia. That being said, we are so extremely lucky to have the support system we do and to have experienced nothing but love and support from our family and friends since day one. That love has never wavered.
That first year of her life went by in a blur but it wasn’t without its struggles. Two hospital admissions for pneumonia by the time she was 4 months old, feeding struggles, many specialists and doctors’ appointments, and a lot of therapies. It was insane but it was also amazing in so many ways as well. I got to experience being a mom for the first time, an experience I once thought had been ripped away from me. She was tiny but mighty, absolutely incredible in every single way, and every dream I had ever had.
After all the pain she has gone through, I can honestly tell you she is single-handedly the strongest person I have ever met. This girl has gone through 13 rounds of pneumonia, and five different surgeries in her short little life; the most difficult and terrifying being her open heart surgery. Regardless of each hurdle thrown at her, she has rocked each one and shown so much strength and resilience. I’m just constantly in awe of her. She’s been given a life full of obstacles, has faced judgment before she was even born but yet, here she is, shining bright despite these challenges. To know Liv is to love her and let me tell you, anyone that gets to know her, is so so lucky.
I have spent the majority of her 5 years on this earth advocating and shouting her worth at any given opportunity. Social media has given me the ability to show her off and to show people the real side of her diagnosis. I share everything in our space. That includes the nitty-gritty and the not so beautiful pieces of our life. I feel like I’ve really grown as a person and a mother throughout our journey. I’ve learned how to stand up for what’s right, how to love unconditionally, how to see the beauty in our differences, and how to put someone else’s needs before my own. A special needs mom has become my title. It’s what I’m known for. It’s full of appointments and therapies, it’s full of happiness, fears, struggles, triumphs, unknowns, hard work, ups, and downs. It’s messy, it’s raw and it isn’t always easy or beautiful, but it’s our life, and it’s our mess.
I have no idea what the rest of our future holds but I do know I will continue to be her voice for as long as she needs me to be. I will continue to advocate whenever the opportunity arises, and I will never stop sharing her beauty with the world because truthfully, the world needs more people like Olivia.”
This story was submitted to Love What Matters by Ashley Charlton from London, Ontario. You can follow their journey on Instagram. 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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