RileyWhen my friend Jennifer Lister was expecting her third child, I was so happy. She's an amazing person, a fantastic mother. Jennifer and I don't live near each other anymore so we keep up on Facebook and I was so excited to virtually be there as her pregnancy progressed. Then she had a miscarriage. Everyone was naturally upset. But it was almost like Jen was the one to make us all get through it, even though it was she who was hurting and affected the most. She is a nurturer. So when she became pregnant again, we all rejoiced and prayed.
When she told us they wanted to rush her to c-section, we worried. When she told us her baby girl, beautiful Riley, had Down Syndrome, we worried for her health. But we learned quickly about the power of positivity, and we know Riley is here to do great things. Jennifer is allowing me to share her birth story, and how she sees Riley as a gift. On Down Syndrome, she says, "There's nothing down about it."
In Jennifer's own words:
We tried for nine months straight, my husband Brett and I, after just having a miscarriage two months prior. Then, it happened .... I knew I was pregnant even before I took the test because of the dreams I was having. I'm a very vivid dreamer. I find out many things in my dreams.
About 14 weeks along, an ultrasound detected my placenta was low so they needed to watch it. If it didn't move, I was told I would have to have a c-section. I've never had any operation at all in my life. I have two daughters and delivered both vaginally. As they were monitoring my placenta monthly they found "soft markers" for Down Syndrome. That meant both Down Syndrome and non Down Syndrome children can have these markers. Immediately I responded with, "They are all going to go away." But my doctor wanted me to have blood work done to see if I was high risk for Down Syndrome. It turned out I was. When he called to tell me, he informed me that I still had time to kill her. I was floored. I was 22 weeks along and I have THE RIGHT to kill my baby?! Who gives me that right? I can kill my baby but not my annoying neighbor or a rapist. How is that okay?
I couldn't even find words to say back at first, then I almost threw up. My response was of what you can imagine if you know me. To this day it makes me so very sick I had the choice to end my child's life ONLY because of Down Syndrome. I shouldn't have THAT right no matter WHAT the case is! I am a HUGE believer in the power of attraction, and I knew the markers would go away, and they did. But I knew there were risks and I told myself that if she were to have Down Syndrome (which by the way should be called Ups because they are a blessing from God) it would be a very mild case. I kept telling everyone this, how mild I felt it would be. How everything was going to be just great!! They were nervous, I was excited. My Mom told me I need to read about Down Syndrome and all the bad things that go along with it, you know to prepare myself. But I was prepared. There were too many negative things online about it and negativity was not in my plan for my daughter Riley.
During my pregnancy, I would sit on my bed and look at Riley's name painted on the wall and I felt that something was a little off. I felt like nothing was wrong, but something wasn't right. I just blew it off as my hormones. I see this as me knowing she was special before I even met her.
Thirty-six weeks and six days along on Monday, August 15, 2011, my ultrasound detects my amniotic fluid is pretty low and she likely needed to come that day. So there I sat in one part of the hospital waiting to be told by my doctor to go over to labor and delivery. It was time -- I called my husband to leave work to come meet me. The nurse gets me ready as they wait for Brett to arrive.
The trip to the OR seemed like such a long ride, but finally we got there. Instantly about five different people start working on me all at once, prepping me. I do not remember being wheeled back to my recovery room I was so heavily drugged. I DO remember my husband coming into the room crying telling me the NICU head doctor just told him Riley has Down Syndrome. He was admiring Riley through the glass as they were bathing her and this doctor comes up to Brett and says "You're aware of her condition right?"
I was so angry that there wasn't more sensitivity from that doctor. Brett was upset, I was still groggy, and our two older daughters were scared and confused. And I hadn't even seen or nursed my baby yet. I delivered her at 5:25 p.m. and she was brought to me after 2 a.m. We were told she wasn't eating, but I wanted to nurse her so I didn't know why they weren't bringing her to me. When I finally saw Riley, I smiled. Everything calmed. As I looked down at my precious baby, I couldn't see anything at all different about her. She was perfect from head to toe.
At about 10 a.m. the next day, I'm told they hear a murmur in Riley's heart and it could be a hole. After crying for about 45 seconds, I said she is going to be just fine. Later I am told it's a normal murmur and her heart is just fine. The next morning they took her from me, again. This time she was admitted to the NICU. She hadn't truly pooped yet. I walk down to the NICU with my mother-in-law to find out what's going on. Brett and the girls weren't there yet. They inform me how some Down Syndrome infants have bowel problems and she may need an operation if she didn't poop soon. Once the operation took place it would be weeks before we could really start to feed her so she may be in there a while. Again, I cry as they tell me this. I'm not listening. I'm thinking rainbows and butterflies. I look up and say how she is going to poop and will not need an operation. Two hours later, she pooped! I was told she needed to stay in the NICU until we go home with her, but I can start feeding her in about 12 hours. She had a feeding tube down her throat at first, but then got to take some breastmilk from drops from a bottle.
The next few days were a blur. Many hours spent in the NICU trying to get Riley to drink some breastmilk so she could go home. During these days I remember the looks on everyone's faces. So nervous. I smiled and focused on "all will be fine". Don't get me wrong I had plenty of "cry-water" moments, balling my eyes out because I didn't fit in that tiny little NICU crib she was in.
A friend of mine called me to tell me everything was going to be just fine. Her son who is 7 has Down Syndrome and he is perfect. I remember how amazed she was about my happy attitude and how I was handling everything. She too was smashed through the floor by how she was informed "of her son's condition" after being told all the tests were negative as well.
I remember sitting in my hospital bed SO very excited to have Riley for all she is. I told everyone too -- doctors, nurses, my friends, people I passed in the hospital, I told anyone who would listen, and even some who weren't. You should have seen all the doctors faces when I would talk to them. It was like I was consoling them. They didn't know how to react to me. Everything they had to say about Down Syndrome was negative and with every single negative I came back with at least three positives. It felt so empowering.
It was the nurses who were the compassionate ones. Two nurses, both with Down Syndrome children, came to see Brett and I as soon as they heard. Those nurses were amazing, reassuring me their children were just perfect and Riley was, too. I told them I agreed. I'm still close with one of those nurses. We text, send pictures of our kids and talk about meeting again. I love it.
Riley came home after six days. If someone were to ask me have I ever won anything my answer is yes, I won the lottery the day Riley was able to come home. Having to leave the hospital without my baby was the hardest thing I have ever done in my entire life. It was August 23, 2011, and I was waiting for us to be discharged from the NICU and the earth moved. Literally. There was a freak occurrence -- an earthquake centered in Virginia shook much of the East Coast and where I was in Pennsylvania. As I stood there smiling from head to toe, ear to ear, holding my baby, I felt the earth move beneath my feet. I have never felt something so scary and powerful in my life. Then I looked down at Riley and thought, "Of course there was just an earthquake, you're coming home today and that's huge. You're going to rock this world on it's ass for the better!" I wasn't scared anymore.
As we were being discharged a head doctor told us they received the chromosome blood work back. With this scared and not great look on his face he confirmed Riley did have Trisomy 21. My immediate reaction was a great big "YES" with a "fist pull down" through the air and a huge smile! I can still see the doctor's face. At first he thought I was confused and misunderstood him. Oh hell no he was the one confused not me. Well, he and my husband both looked at me a little funny, but hey I'm used to that. I consoled the doctor telling him how this is a wonderful thing and I'm so excited. He truly looked at me as if I had just spun my head all the way around while vomiting.
Riley is now 5 months old and she is the happiest baby I have ever known. She does physical therapy and speech therapy, and massage therapy once a week. I'm a fighter and will make sure my daughter gets all she needs. Since the day I was told there was a possibility Riley would have Down Syndrome I truly have been excited and ONLY "saw" her healthy and excelling. Power of attraction, I told you I swear by it. Riley is a very healthy and smart baby who is meeting all her milestones, some even ahead of time.
So, if you are blessed enough to have been chosen to have a baby with "Up" Syndrome -- or you know someone who has -- my advice is to SMILE. It's the best thing that will ever happen to you. It's a shame society and doctors are blind to this. I have believe that Riley will open their eyes! There is nothing down about it.
Jennifer has created a Facebook group where parents of children with special needs can support each other and talk. It's called I'm Proud of My Child With Special Needs. She plans on sharing more and hopes others will as well.
Thank you for sharing your story Jennifer. Reading this I am reminded how when we are faced with challenges in life, we choose either to find the positive or dwell in the negative. Your positivity is so inspiring. I know you and Riley are destined for even more great things.
Do you have a child with Down Syndrome and can relate to Jennifer? What would you say to pregnant moms who are worried about a test saying their child may have special needs?