I will never forget the day I found out that my baby had a 98% chance of having Down syndrome. I need to go back a little before coming to that day. It was the end of summer,
It was the end of summer, school was starting, and I was going to start getting back into the swing of work. I had an appointment a week before I had to report back to school. The doctor highly recommended me to get some testing due to my “advanced maternal age.” I honestly didn’t really care to go through the testing. I thought, I am not that old. Lots of my girlfriends were having babies and everything was fine.
Plus, no one ever thinks that it will be them.
I went back and forth about whether to do the testing. The one thing that sold me was, that at 10 weeks pregnant, with just a simple blood draw, the NIPT test could tell me the sex of the baby, sure, why not? The morning of my appointment, it was cancelled. That was fine, I’ll just skip it, but they wanted to reschedule. I really didn’t have the time, but I went on the rescheduled date for the counseling and testing.
On the very first day of school with my brand new class of kindergartners, I saw that I had a few missed calls from the geneticist. Probably just calling me to let me know everything was fine and what I was having. I didn’t have time to take the call, so I figured I will wait for her to call me back after school. I decided to treat myself to pedicure after school. On my way back to the car, my phone rang, I answered it, and sitting in the parking lot, I got the news. She told me that there was a 98% chance that this baby had Down syndrome. I was in shock. I had to have her repeat the news. My world just stopped. Tears started and they wouldn’t stop. She kept telling me this was a screening and I would have to have other tests to confirm. I now also had to drive home and tell my husband.
She told me that there was a 98% chance that this baby had Down syndrome. I was in shock. I had to have her repeat the news. My world just stopped. Tears started and they wouldn’t stop. She kept telling me this was a screening and I would have to have other tests to confirm. I now also had to drive home and tell my husband.
I was in shock. I had to have her repeat the news. My world just stopped. Tears started and they wouldn’t stop. She kept telling me this was a screening and I would have to have other tests to confirm. I now also had to drive home and tell my husband.
I had to have her repeat the news.
My world just stopped. Tears started and they wouldn’t stop. She kept telling me this was a screening and I would have to have other tests to confirm. I now also had to drive home and tell my husband.
Tears started and they wouldn’t stop. She kept telling me this was a screening and I would have to have other tests to confirm. I now also had to drive home and tell my husband.
She kept telling me this was a screening and I would have to have other tests to confirm. I now also had to drive home and tell my husband.
I do not do well with the unknown, so I scheduled to get the CVS testing to confirm the diagnosis. I was also informed that there could be a risk for miscarriage with the procedure, but I didn’t care. In the back of my mind, I thought, maybe that would be better? Knowing what I do now about my Elijah and the joy that he has brought to our family, this now brings tears to my eyes.
That first night was a sleepless night.
I did not want this diagnosis.
I had so many questions, what would our life be like? Why us? Why me?
What would other people and family think? I can’t handle this in my life. I was familiar with what Down syndrome was, but this wasn’t supposed to happen to me.
From the very beginning, I ran into many bumps. Cancellations of the first appointments, and with the CVS testing, came other ones. It was probably God’s way of telling me “I got this,” but I totally ignored it. I had to get some tests ran before the actual procedure, they lost my sample, I had to go back down and do it again. I had gotten some sort of infection so I had to go on antibiotics first. The morning finally came for me to go to hospital. I had to drink a large amount of water. I honestly did not drink that much. It came time for the procedure. My bladder was so full that I had to keep using the restroom for the doctor to see what she needed to see on the ultrasound. After several tries, the doctor stopped and said she couldn’t get what she needed. I was given the option to go to a more experienced doctor. We decided right then and there that we were done. No more. This was our baby and that was that. My husband and I have always believed that children are a gift from God. We were keeping this baby no matter what. We had always
We decided right then and there that we were done. No more. This was our baby and that was that. My husband and I have always believed that children are a gift from God. We were keeping this baby no matter what. We had always known it, but my craziness just had to have a for sure answer.
That day I surrendered to whatever gift we were given by God. He was in control, not me, no matter how much I wanted. I am sure that each of those bumps was God trying to show me that He was the one in control of this. We were told that day we were going to have a boy. I had wanted a baby boy for our son. He was the only boy in the world of his 5 cousins. I was happy that we were having a boy, but also worried what it would be like for my children to have a brother with Down syndrome.
I have to say in this day and age, it is still surprising how most of the medical professionals out there really do not know how to deal with this. I had the genetic counselor constantly calling me to talk about options, and the doctor that I had an appointment with after the diagnosis could only say sorry. She didn’t say anything positive or reassuring. I could tell she didn’t know what else to say, so she talked about my hair. After that appointment, I was on a search for a new doctor. Luckily, through a family friend that also worked for the same medical group, she referred me to a wonderful God-loving doctor.
There were some very dark days in this pregnancy. Only a few people knew of this diagnosis. I didn’t tell many people. I was too tired emotionally and physically to have to worry about defending this decision we had made, and I was so sad. I was sad for the baby that I wasn’t going to have. I was too sad and too tired to worry about what other people thought. I did everything I could do to keep my mind off this pregnancy and baby. I worked/ taught up to my 38th week. I only stopped because the doctor wanted me to come in twice a week for stress testing. I really would have kept on working. I didn’t do much to prepare for this baby. I didn’t want to buy the cute clothes or things we might need for a baby. I had a fear that this baby might not come home. I really didn’t have any reason or medical complications to think that, I just did.
I only stopped because the doctor wanted me to come in twice a week for stress testing. I really would have kept on working. I didn’t do much to prepare for this baby. I didn’t want to buy the cute clothes or things we might need for a baby. I had a fear that this baby might not come home. I really didn’t have any reason or medical complications to think that, I just did.
I had done a week of stress testing and things seemed fine. It was a Monday morning that I was going in for another round of stress testing. The baby’s heartbeat was slow that day. “Could you be in labor ” asked the nurse. “No, I didn’t think so.” I was checked and almost at a 5. I was going to have a baby by early evening. I thought, great, I can go home, get my stuff, have my husband drive me back down. “Oh no, we can’t let you go home, and we are walking you down to delivery right now!” What!!! I made a few phone calls to arrange for my kids to get picked up and taken to
“Oh no, we can’t let you go home, and we are walking you down to delivery right now!” What!!! I made a few phone calls to arrange for my kids to get picked up and taken to
What!!! I made a few phone calls to arrange for my kids to get picked up and taken to nana’s house, and husband to come down, and got settled in my room. Things happened very quickly.
The delivery was pretty smooth, easy almost. I even did it with no drugs! I knew as soon as I saw him that he had Down syndrome. I was scared, but just one look at that squishy baby, nothing else mattered. We were bombarded with tests, and specialists and social workers. Every two minutes something was making a noise. All I wanted to do was go home.
A pediatrician, who didn’t have the best bedside manner, confirmed that he had many characteristics of down syndrome, the eyes, smaller ears, slight line on his hands. So many thoughts and feelings were swirling in my head. To be honest, I felt defeated and let down. I had spent so many sleepless night praying. Praying to God to let our baby not have Down syndrome, to let us be that 2% that the test maybe mistakenly diagnosed. Of course with the baby in front of me, that mama bear urge comes in and all you want to do is take care and protect this baby. We were lucky. Elijah had no health issues at all. He was and still is a very healthy little boy.
I am only three years into this adventure with Elijah. To any moms and dads out there facing this diagnosis, let me be the first to tell you, it is so worth it! This child is going to take you on an unbelievable adventure. It is one you didn’t think you wanted to go on, but it will be the most amazing and beautiful thing you will ever experience.
Elijah has taught me so many things that I would have never realized or experienced if not for him in my life. He is the biggest joy to our family. He can light up a room when he walks in and flashes his smile and dimples. He loves to say hi and hello to everyone he passes while sitting in the shopping cart at stores. Elijah is all heart. His brother and sister love him to pieces. He is the hardest working little boy that I know.
Being his mom has probably taught me more than I can ever teach him. He has taught and shown me what is important. I don’t sweat the small stuff anymore. Elijah has taught me to cherish and enjoy what is in front of me.
Our family is closer than ever these days. We are just like every other family. We do life, we travel, we go out, our kids are in sports and activities, we have good days, we have crazy days… Our family is not that different than any other family.
Down syndrome has not held us back. If anything, Down syndrome has made our life better. There is perfection and beauty in our children with this extra magical chromosome, that most people do not have the chance to be a part of. When parents are presented with this diagnosis, it seems only negative things are presented to us, and we feel devastated. Every year on the first day of school, I am reminded of that day a few years back when I thought my world ended, but I am also so glad that I can also see how wrong I was.
The world we live in still believes that people who are differently abled as people with little value and worth. We are the lucky few who will find and experience the beauty, perfection and worth in our children with this extra magical chromosome.
My name is Ivy . I live in beautiful, Southern California in the Inland Empire. I am a mom to 3 kiddos, a daughter, 12, a son, 9, and Elijah, the one with that magical extra chromosome, who is now 3. I am also a full time kindergarten teacher. I am on Instagram under @elijah_s_momma
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