‘Test after test doctors would tell us ‘it came back normal.’ How? Why are they coming back normal? My son seems to be getting worse, NOT better.’

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“I found out I was pregnant at 8 weeks with my son. At 13 weeks and 2 days I was told my son was lifeless and his heart had stopped beating. That moment replays in my head everyday. I didn’t believe it at the time, I don’t know if it was because my heart was shattered and numb but for some reason I had faith my son was ok. I prayed endlessly day and night. A week later I had to go back to get an ultrasound and my ‘lifeless’ baby was sucking his thumb with a heartbeat of 178 beats per minute! On December 12, 2015, I gave birth to a healthy 6lb 8oz baby boy named Andres Iverson Torres, or to us, Buba. Six hours into our journey my sister-in-law noticed his lips were turning purple. The doctors rushed him to the NICU to find out he couldn’t breathe. My son was in the NICU three weeks with oxygen which was terrifying. After that, he was able to come home. For the first five months of his life he was a healthy chunky boy.

Courtesy of Andrea Torres
Courtesy of Andrea Torres

When he turned six months our blue sky turned grey. He had his first seizure and was admitted to the hospital and hooked up to machines. I had never seen so many wires and so many lights! The neurologist came in saying, ‘momma your son is experiencing silent seizures’. I thought to myself, ‘how long has he had this? Was it something I did?’ I had so many questions. To this day, most of my questions still haven’t been answered. By nine months his pediatrician diagnosed him with Hypotiona, a muscle disorder known as floppy baby syndrome (weak muscle tone) and failure to thrive. She told us ‘he won’t be able to walk, run, hold a spoon, or hold his toys .’ Everything in life we take for granted my son was not going to be able to do. My son has Hypotonia I’d tell friends and family. ‘What is that?,’ people would respond. I don’t blame them for not knowing as it is a rare condition that more than 88.3% of people have never heard of. There isn’t any cure and doctors don’t know what causes it. Test after test doctors would tell us ‘it came back normal.’ How? Why are they coming back normal if my son seems to be getting worse and not better? I can still see the confused look doctors got on their faces as they just shrugged and ordered more tests. I understood their perseverance as there had to be a scientific explanation to all of this. Maybe one day we will get one.

Courtesy of Andrea Torres
Courtesy of Andrea Torres

Since he was 3 months he would wiggle his fingers a bit strangely along with opening his mouth oddly. We had asked doctors what it was and they would tell us ‘it’s a tick’ or ‘it’s just involuntary movements’. I told my husband, ‘No, Buba has something and they aren’t catching it.’ At the age of 2 1/2 Buba went to get screened for autism and they told us, ‘he doesn’t seem to fall on the spectrum’. My husband and I didn’t agree with that and as parents you just know there’s something deeper. We decided to get a second opinion when he was three. Recently they evaluated him again and my husband and I were right, he has autism. Deep down we knew but to hear it was another story. The doctor said, ‘based on what I am able to see today I am diagnosing him with mild autism, do you agree with my diagnosis?’ I said yes but at the same time I felt like someone had punched me in my stomach. I wanted to cry not so much from sadness but from happiness! FINALLY someone listened! Finally he can get the help he needs and the door has opened. Everything makes sense now! This is why he does certain things. He isn’t ‘weird’, ‘misbehaved’, or ‘spoiled’. It isn’t bad parenting it is an actual condition my husband and I are trying to learn more about each day. Now he can receive the therapy he needs!

Courtesy of Andrea Torres

Our family still says ‘there isn’t anything wrong with him’. I don’t understand why they deny his diagnosis, having autism doesn’t make him broken and it doesn’t change him. I just wish they could just accept it and support us. I’m physically and emotionally drained. Some days are worse than others and I feel so alone. I feel all the weight and pressure is on me. I have to learn to regulate my emotions to help my baby regulate his. The Facebook mom support groups have helped me not feel so isolated. It helps knowing my feelings, fears and confusions are shared. I’m not the only one wanting to grab my car and drive as far away as possible from reality some days.

Courtesy of Andrea Torres

We are still undergoing genetic testing to determine if there’s more to why he isn’t growing like a normal 3 year old but for now we are relieved we are getting somewhere. I treasure those hugs he wasn’t ever supposed to be able to give us. I got a tattoo of a picture of him walking on a puzzle piece. The reason is simple, I wanted to show we finally got an answer. My son is autistic and we will keep walking down this road. Mommy will continue to fight your battles, I will always be your voice and your biggest support. I understand you baby, I can see your fears and I hear your worries. I was told by a very close friend, ‘embrace the unique way your child is blooming, even if is not in the garden you imagined.’

Buba you are our miracle. After all your tiny body has been through in your short life, you continue to smile and fight. Be the Prince Charming you were born to be. With you we have discovered what faith must feel like.”

Courtesy of Andrea Torres
Courtesy of Andrea Torres

This story was submitted to Love What Matters by Andrea Torres. You can follow her on Instagram here. Submit your own story here, and subscribe to our free newsletter for our best stories.

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