‘After watching my daughter fight for her life, I realized I had to fight for our family. I needed to heal.’: Single mom shares daughter’s journey with Down syndrome, ‘We’re growing together’

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“My daughter, Amadeus, was born September 26, 2017, and had a birth diagnosis of Down syndrome. On her first day of life, I truly became a mom and a person I had never seen before. I have four other kids but being a parent to a kid with special needs and a heart defect is something that has changed our lives… for the better.

My pregnancy was just like the others (easy), except this time I was fighting for my marriage. I found out shortly after I became pregnant, my then-husband had been cheating and the woman he’d cheated with was also expecting a baby (due one month before me). My world was shaken. My anxiety was through the roof. I was mentally and emotionally sick. I had spoken about this with my birth team and they were okay with me delivering my baby alone if that’s what I needed to do. I decided he did, in fact, need to be there for the birth of our last child, and he would have fought to not miss it. My pregnancy was an emotional roller coaster. I thought the affair was over until later when I found out they had a baby on the way and that created a pain in my heart like nothing I have had to process before.

We had an amazing and beautiful water birth and our family was now complete. Not only was she a surprise diagnosis of Down syndrome, but we were also surprised to find out it was a sweet little baby girl. Not knowing anything really about Down syndrome or her heart defect, my research started. We ended up having a week’s stay in the hospital so it gave me plenty of time.

Courtesy of Amber Rojas

I was excited about my beautiful daughter but I started to mentally beat myself up. I remember seeing the life expectancy and thinking that her baby would live longer than mine… My daughter would possibly go into heart failure (and she did) and his other baby would not. My daughter could potentially get leukemia, which is common in kids with Down syndrome, and hers would not. My daughter would struggle through life and hers would not. But before I left the hospital I told myself I would give my daughter, for however long she is alive, the best life, which includes me. I needed to heal. I needed to forgive. I couldn’t go back and dwell on what was done, and I needed to move forward and not let my mind hold me back or my kids back from our blessings.

Courtesy of Amber Rojas

My daughter, now 3 years old, has been the epitome of strength. Every challenge she has gone through, she has overcome. She has proven so many doctors wrong and is just your typical 3-year-old. She fought for her life at 4 months old and we almost lost her. She overcame RSV and came out stronger. She developed a horrible oral aversion and was tube feed for 6 months, but she overcame and now eats and drinks everything by mouth when the doctors said she wouldn’t. She was in heart failure and was released 5 days after her 8-hour open-heart surgery. Our girl is a fighter! She has taught me to not just accept things as they are but fight for things to be better.

After having watched my daughter fight so hard for her life, I realized I had to fight for our life as a family. I decided to separate from my husband. We had tried to keep the marriage together for 3 years after Ami joined our family… but I mentally couldn’t get past it, as the pain on some days was unbelievable. I wanted my kids to see and feel me happy as they once did.

Courtesy of Amber Rojas

Sometimes life’s events bring you together and other times, it helps you see clearly what is best for you and your kids. My children and I have grown together during this pandemic and I realized doing life as a single mom was not as bad as I thought. I saw everyone in my family grow and that was enough for me to decide to permanently separate. My time with my kids’ father was filled with many memories and five beautiful children. He has been and still is a great provider for us, and I would do it all over again the exact same way knowing I left no stone unturned.

Dream Focus Studio

When the world was literally shutting down around us, I prayed for God to give me a way to continue to heal. God put on my heart to celebrate Down syndrome Awareness Month with 31 ‘virtual meetings’ of 31 different families highlighting the diversity within the Down syndrome community in October, which is Down syndrome Awareness month. I didn’t realize it at the time, but this was actually part of my healing work for my own heart and for my children. I didn’t understand that, especially during this time of mental healing for myself and my kids. Not only did this build my confidence back up that had been stripped from me during the previous years, but I saw I was capable of raising up the voices of others, which in turn was supporting their healing too.

Dream Focus Studio

It confirmed to me what I was really capable of doing, even during a hard time. We helped elevate so many voices and have since helped me connect so many families especially in the Black and Brown community. Not only families with a diagnosis of Down syndrome but so many other beautiful families with different diagnoses all over the world. My daughter’s diagnosis helped me realize I have the same fight. Now, we are fighting together to help normalize kids with different abilities.

Through my daughter, I was able to connect with so many other families within the Black and Brown communities, not only within the DS communities but within other differently able communities too. I realized, through my own healing, I had started to build a platform for others to heal and this was a calling that had been put on my heart from God to build into something more meaningful and louder. A platform for more voices to spread the light and love that had been gifted to me to others.

Courtesy of Amber Rojas

This has led me to partner with another mom who has the same calling on her heart to host an event – Stronger Together – creating a space to hear from more moms with differently-abled children about how they have managed their emotional and sometimes physical recovery, and most importantly, to build connection and support one and other so nobody has to go through their journey/ story/ heartache alone.

So please don’t say, ‘I’m sorry.’ We are healing as a different kind of family and moving forward. I am believing we will figure out how to co-parent together in a way that works best for our kids.”

Dream Focus Studio

This story was submitted to Love What Matters by Amber Rojas. 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.

Read more stories about the Down syndrome community here:

‘The nurse handed my daughter back. I instantly noticed her teeny tiny ears. ‘Do you think she has IT?’ I looked at my husband in fear.’: Mom of 3 births baby with down syndrome, ‘She is the most amazing human being I’ve ever met’

‘Is he ok?’ I was afraid to say the words. I never told a soul about my feelings, not even my husband.’: Mom births son with Down syndrome, ‘I am so thankful for his perfect 47 chromosomes’

‘My principal said, ‘I’m adding a boy to your class. He’s from foster care and has Down syndrome.’ I felt this tug on my heart. ‘I want to take him home.’: Single mom, kindergarten teacher adopts down syndrome student

‘She’s in heart failure.’ I’d most likely never get to meet her. We could deliver our stillborn baby.’: Woman gives birth to high risk Down syndrome baby, ‘She defies all odds’

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