Tristan’s Story- When Mom Recognized Down Syndrome First
There are so many stories we share about the moment a family realizes that their child had Down Syndrome, but a few stand out, and those are the ones where the mom, in her heart of hearts was the first to know. These stories often have a number of similarities, either the mom to be felt something different was to be or possibly she had some almost supernatural intuition of what was to be, but no matter what, it is a story to be told when mom recognized Down Syndrome first, even before the doctors mentioned it.
Our story started in the bathroom as I sat on the on the side of our bathtub staring at a pregnancy test, mesmerized by the two bright pink lines that I had been praying to see for months. This was our first pregnancy and a million thoughts had raced through my head, was it a boy or a girl? What will our family think, who do we tell first? Holy crap I’m Pregnant!!!
Long story short the nine months flew by with no complications and before we knew it we were walking through the hospital doors with each contraction coming one after another. After hours of labor I finally heard the words I had been waiting to hear all night, it’s time to push and finally we get to meet our little boy!
After 2 hours it was finally time to meet my son Tristan and as he was set on to my chest and our eyes met for the first time it wasn’t the moment I thought it would be as something was off! Did I really see what I thought I saw? No it couldn’t be.
Before I could look again he was taken to be cleaned off, Colton my husband immediately stood by his side and was smiling from ear to ear he was beaming. I was trying to find the same emotion in myself but my brain was still trying to process what my body had just done and what my eyes thought they saw.
Once he was handed to me again I was able to look at his face my heart sank to the very pit of my stomach the back of my brain was on fire. It was exactly what I thought. His Beautiful Brown almond-shaped eyes met mine….. Down syndrome echoed throughout my brain, He has Down syndrome.
While everyone in the room was beaming and smiling and hugging and crying happy tears I was trying to keep it together. I was trying not to scream out and give into the emotions that were running rampant throughout my body!!
I finally couldn’t take it anymore and asked everyone to leave the room except for my husband and the doctors. As soon as everyone was out I immediately looked at my OB and blurted out “he has Down syndrome, be honest with me he has down syndrome.” Everyone in the room stood silent and stared at me, even my husband.
My OB did say he had characteristics of Down syndrome but wanted to do the blood test to make sure, but in my heart I knew that’s what he had due to working with other children with Down syndrome. I was upset over his diagnosis because I was terrified of other people’s reaction as I know some people would feel sorry for us and, and would think that Tristan would not be capable of doing much. I knew a lot of people think that kids with DS we’re very incapable of doing normal things in life. I didn’t want anyone to call or text or post anything about Tristan; I didn’t want anyone to feel sorry for him or us.
After the pediatrician came in and said he probably does have DS and was still going to do the blood test for the extra chromosome we then one by one told our families. We all cried happy yet sad tears, tears of fear of the unknown. I cried out of shock, and guilt about how I felt the minute Tristan was born. How could I?! I hate myself still to this day for the way I reacted.
Shortly after Tristan was born he was rushed away to the NICU for low oxygen but later that day I was able to go visit and was told by the head nurse that he had two holes in his heart and his lungs were not able to fully inflate properly. He also had signs of an infection. Thank goodness I was in a wheelchair or I probably would have fallen down, everything was spinning my brain was trying so hard to process everything that was going on as his diagnosis was no longer my concern for the moment, his health was!!! After I was taken back to my room I couldn’t hold it back anymore as all the emotions that I was trying to hide took over my body. “Why can’t I hold my baby? Why does my baby have to be sick?! Why us why?!
I was so mad at myself; I blamed myself for the state my baby was in, I felt like my body had failed Tristan as it was supposed to give him everything he needed to be healthy!!!!!!
The rest of the week was a blur. A day after he was born we were discharged and forced to walk out
of the hospital without our baby. We got home to an empty house, exhausted mentally and physically. I got in the shower and tried to wash away all the hurt thinking that maybe being in my own home would be better, but it wasn’t. I stared into the mirror not recognizing the woman who was staring back she looked old and tired. Big purple bags hung under her eyes. I was supposed to be feeling happy and excited but all I had was fear and exhaustion.
Every day seemed like torture walking in holding him talking to every nurse to find out what we needed to do to get him to come home. We worked on bottle feeding and breastfeeding, we had doctors come in and explain that he would possibly need heart surgery if the holes do not start to close. The worst part was leaving the NICU, as part of me crumbled into a million pieces each time I had to leave him as it felt like I was holding my breath the whole day until I laid down to go to sleep and I couldn’t hold it anymore and my pillow was wet from tears by the time I had fallen asleep.
After a week of torture we had finally gotten the news we were praying for! He could finally come home! After spending the night at the hospital to learn how to use his oxygen and pulse oximeter we were finally walking across the parking lot with our little boy in hand. I literally wanted to run as fast as I could to the car thinking that they would make us come back and keep him longer. Our nightmare wasn’t over yet
We hadn’t even been discharged for 48hrs when we were sent to Primary Children’s Hospital because Tristan started having seizures. That night was the worst night of my life. They did so many tests, CT scan, MRI, urine test, spinal tap, and blood tests. Watching my week old baby scream from pain,he had had been crying so hard that his face was swollen. My husband and I so desperately wanted to take his place so that he would not be in pain. I stayed up all night watching his every move, his every breath. After all of that they couldn’t find anything, so after spending a week there he was put on medication that stopped the seizures.
Tristan is now 4 months old and thriving! He always has a smile on his face and brightens up anyone’s day that comes in contact with him. our prayers were answered and his heart and lungs are healing on their own, He has not had a seizure since we were at Primary Children’s but the EEG scan shows that he still has seizure activity so it’s just a waiting game for now.
If I could go back in time to tell myself it’s all going to be okay I would. I would tell myself that this is just a different traveling plan is all; you will just be viewing things a little bit different. My message to other moms is that you are not alone in this. Be strong, take a deep breath it’s hard but so worth it in the end.
My name is Charly and I am Tristan’s mom. I live in Utah. I grew up on a small horse farm, training and riding horses is my passion. My other passion is working with high school kids with special needs; I have worked with these wonderful souls for 7 years. I have been working with an occupational therapist and have been a communication intervener for the deaf and blind. I am now at a charter school for kids with autism. You can follow Charly and Tristan’s story on Instagram @livingextra_on_the_emptyrocker
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