Living a Beautiful Life with Down Syndrome

Down Syndrome

Maria & Jordan Grace

Our Story

Our four year old started asking for a baby sister, and every night she would ask God to send her a baby sister during our family prayers. My husband and I began trying, we were ready to add a little one to complete our family. It wasn't as easy as our first pregnancy. We tried for months, and the stress overwhelmed me. I was thinking maybe our family would not be able to grow. That sweet day came, and we were finally expecting. We were thrilled and sharing our news with everyone! We didn't wait until the 12 weeks to share our great gift on the way with all our friends and family. Our Ana Maria would kiss my growing belly and share with us how much she already loved the baby. We would wait to find out if she was going to have a brother or a sister as she was a surprise herself.

Dealing With The Diagnosis of Down Syndrome

At 20 weeks, we drove to the lab to see our precious little miracle on the way. The car ride was filled with laughter and songs. While laying patiently to get all the official pictures, I kept chatting away with the technician who seemed quiet and focused. When she was finished she said she would be back in a little while with the doctor. Greg and Ana Maria came in and we waited patiently to see the baby again, the fun way this time. We had no idea our world was about to change; in that instant there would be a before and after in our lives. The doctor came in and told us the baby had a heart defect. Tears immediately burned down my cheeks and continued to flow down my shirt. Then I felt the room spinning, too much information I couldn't retain, I stopped listening and began to worry. Would I lose the baby? Could I walk carefully enough to not fall and hurt the baby even more? I couldn't breathe or speak. I'm sure I sobbed loud enough to scare my precious daughter, the big sister to be, who was so looking forward to having a baby to play with. My first words were "is it a boy or a girl?" We were having a baby girl, God had answered my little one's prayers, but with conditions. Devastation filled my soul. I trembled as I excused myself, searching for the restroom, I wanted to erase what happened and begin anew. As the door shut behind me a horrible cry escaped me and I sobbed. I looked up and told God "no" I'm not sure if I yelled or whispered, but I felt betrayed. We were sent to the hospital for a fetal echocardiogram to see how severe her defect was. 

The commute from lab to hospital was filled with silent cries and quiet fear. The only words that were spoken came out of my mouth "her name is Jordan Grace." We had yet to decide on a name, so I felt in my heart this was her destined name. Our appointment went better than expected, the doctor spoke to us with confidence and reassurance letting us know she would need surgery, but that she would be ok. I've always been a faithful person, I knew we had to start praying for a miracle instantly. I began to contact friends and family to request prayers. One of my calls was to a dear friend who is a delivery nurse, with a shaky voice she mentioned that complete AVSD was correlated with Down syndrome. I fell to the ground with grief. I could not believe what I was hearing. DOWN SYNDROME? I felt my world falling apart. Sure enough, this second diagnosis was confirmed. We were having a baby with an extra chromosome who would have to have open heart surgery. My days were filled with tears. I went into a big dark hole I couldn't seem to climb out of. I would scream "why" towards the ceiling thinking God was punishing me, us, and especially a precious now five year old who was longing for a sister to play with. Greg, my amazing family and dear friends carried me through the dark days, they would allow me to vent, feel and say what I needed to get through the day. Greg had so much faith, he would tell me that she would be perfect no matter what. I didn't know anyone with Down syndrome, now I was going to be a mother to someone who I didn't understand. As the days and months passed, I began to have more good days than bad.

Jordan Grace

On a beautiful day in February, the snow was beginning to melt and the sun was shining bright, I was advised by my doctor to go to the hospital for a check up. It was still almost three weeks until my due date, but I had a feeling something felt funny. As soon as I was checked by the nurse, she said I wasn't leaving the hospital without a baby. The next few hours were filled with messages from my family and friends from all over. My family had booked tickets to come in a couple more weeks so they wouldn't miss the birth. This was it, it was show time! This baby who would change our lives and become our after, would be here in moments. She entered the world by three gentle pushes in a matter of four minutes, peacefully. The doctor placed her on my chest as she looked to me as her soul connected to mine. I already loved her, but the way she looked at me, I knew then our world would be better than ok. Our family was indeed complete. 

Everyone deals with diagnosis in their own way. I didn't want to see or read anything about Down syndrome. I wanted to get to know Jordan Grace for her, not for her diagnosis. However, now I share her with the world and have connected with some incredible people who have been changed in a good way by knowing her. She brings us sweet sunshine, she lives every single moment to the fullest. She plays hard and loves even harder and deeply. The love she has for life and people is truly inspiring. We all should live the way she does. I couldn't be more proud to be her mother. 

Jordan Grace is the perfect sister for Ana Maria, our big girl's dream came true, God did answer her prayers and ours, not what we were expecting, but even better than we imagined. If you have just been given a diagnosis of Down syndrome, please don't let the professionals tell you how terrible your life will be. I was told that my daughter would be a burden, that she wouldn't be able to do anything for herself, that she would end up in an institution. I was so weak and pained, I can't imagine if I didn't have faith and God on my side I would have believed the doctor and missed out on this precious little lady who shows us how to live in joyous ways we never knew. 

Instagram @mommytor_az 


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