While I was pregnant I would sit on my bed and look at Riley’s name printed on the wall. I felt that something was a little off. Nothing was wrong, but something wasn’t right. How neat it was that I knew she was special before I even met her…
Jennifer peaks her head into the living room where her three daughters are playing house. Sarah and Jaimee giggle as they push their little six month old sister, Riley, around in a carriage that is supposed to be for their baby dolls. Riley simply smiles at all the attention. “Mom, come look at Riley!” they suddenly exclaim, “she is smiling!” From the doorway, Jennifer can’t help but smile herself at the scene. In her eyes it is nothing less than picture perfect. Her children are right where they should be… with her. But, if some people had it their way Riley wouldn’t be here. Why? She has Down- Syndrome; Trisomy 21 to be exact. Which somehow labels her as less deserving of life by many in today’s society. What a loss for them. They have no idea of the joy that comes from having a child with “special needs”, but Jennifer does.
This is her story…
We tried for nine months straight, after just having a miscarriage two months prior. Then, it happened. I knew I was pregnant because of the dreams I was having. I’m a very vivid dreamer and I find out many things in my dreams. On December 23, 2010 at 12:30 AM, I got out of bed to use the bathroom. I then decided to take a pregnancy test, because I was a few days late. It was such a methodical routine: pee cup, pee, dip, wait, negative, smile, try again. Nine months of that routine resulted in thirty tests bought in that time span. Yea, I tested a lot! This time was different, though. Even though there was a faint line, I threw it out because I had had so many negatives in the past. I had grown accustomed to being disappointed. Then, I thought, “Let’s take a look at that again.. just in case”. I can still see my hand reaching back into the garbage can to retrieve it. There it was. Positive. I couldn’t believe my eyes. I stood in the bathroom looking at it from every angle for at least fifteen minutes. I kept saying to myself, “It doesn’t matter how faint a line is. A line is a line!” Best Christmas present ever!
Fast forward to my fourteenth week of pregnancy where an ultrasound detected my placenta was low and they needed to watch it. If it didn’t move I was told I would have to have a c-section. As they were monitoring my placenta monthly they found “soft markers”, which can be an indication that the baby could be born with Down- Syndrome. (Both non Down- Syndrome and Down -Syndrome babies can have these markers). Immediately, I responded with, “They are going to go away.” And they did.
After my doctor informed me I had those markers, I had blood work done to see if I was “high risk” for Downs. It turned out I was, so the doctor took the liberty of informing me that I still had time to kill her. Are you kidding me?! I’m twenty-two weeks along and I have THE RIGHT to kill my baby? Who gives me that right? Needless to say I couldn’t even find words to say back to him at first; then I almost vomited. My response is what you can imagine if you know me. To this day it makes me sick that I had the choice to end my child’s life because she might have Down- Syndrome. I shouldn’t have that right no matter what the case is.
Along the way people would tell me that I needed to read about Down Syndrome and all the “bad things” that go along with it, to prepare myself. NO! I was prepared. Negativity was NOT in my plan for Riley.
On Monday, August 15th, 2011, I was thirty-six weeks and six days along when an ultrasound detected that my amniotic fluid was pretty low. Riley was likely to come that day! I told my husband, Brett, who was still at work, to wait for my call just in case they decided it was not time yet.
But, no, it was happening! I called Brett and the nurse prepped me for the surgery.
The trip to the OR seemed like it took forever, but we finally got there. Instantly, about five different people started working on me at once. (The spinal was WAY different than the two epidurals I had with my other two girls). I was strapped and drugged when Brett came in. Slice, cut, pull and she was here!!!
I do not remember being wheeled back to my recovery room because I was so heavily drugged. I DO remember, though, my poor husband coming into the room crying. The NICU head doctor had just informed him Riley had Downs. Brett had forgotten that I was at “high risk”. Apparently, he was admiring Riley through the glass as they were bathing her. The doctor came up to Brett and said “ You’re aware of her condition right?” I was so upset the doctor did this to my husband. That’s how you tell someone? In an abrupt and cold manner, while they are not with their spouse? I remember being mad and certainly distressed for Brett’s sake, but I told him he had to try to stop crying. Our two young daughters were going to be coming in and I didn’t want to worry them. Yet amidst all of this confusion, I just sat there smiling. As I looked down at my precious baby I couldn’t see anything different about her at all. She was perfect from head to toe. Then, they took her from me.
“She’s not eating”, they told me. Well no kidding! She was just born, tired and wanted her MOTHER. I kept begging the nurse to tell the doctor to bring her back to me so I can feed her. The doctor who knocked my husband through the floor would not bring me my child. That darn spinal took hours to wear off, so I couldn’t drag myself down there to get her myself. I had delivered Riley at 5:25 PM and it wasn’t until after 2:00 am that a nurse took compassion on me and brought me Riley.
At 10:00 AM they heard a murmur in Riley’s heart and said it could be a hole. They stood there telling me how Downs children are known to have heart defects. (blah blah blah) “ Not listening, I’m not listening ”After crying for about 45 seconds I pulled myself together and told them she is going to be just fine. Well, later that day around 6:00 PM I was informed that the tests showed a normal murmur. Her heart was fine.
The next morning they took her from me again. This time she was admitted to the NICU, because she hadn’t truly pooped yet. My mother-in-law was with me at the time and we walked down to the NICU together to see what was going on. Once again they began telling me how some infants born with Down- Syndrome have bowl problems and that she may need an operation if she didn’t poop soon. If this operation had to take place, it would be weeks before we could really start to feed her. After hearing this, my tears started to flow. Yet, I refused to believe what they were telling me. “I can’t hear you” I said to myself, “It’s all rainbows and butterflies”. I looked up at them and said that she was not going to need an operation. Two hours later, she pooped! Riley still needed to stay in the NICU until we went home with her, but I was able to start feeding her about twelve hours later.
The next few days were a blur. They were filled with countless hours spend in the NICU trying to get Riley to drink some breast milk so she could go home. I remember the nervous looks on everyone’s faces during those days; but I just smiled and knew that all would be fine. I was so excited to have a child with Downs, and I made sure everyone knew it!
I told doctors, nurses, friends and random people who I passed in the hospital. Didn’t matter if they wanted to listen or not, I told them anyway! You should have seen all the doctors’ faces when I would talk to them. It was like I was consoling THEM! It was great! They didn’t know how to react to me. Everything they had to say about Down- Syndrome was negative. So, with every one of their negatives I came back with at least 3 positives. It felt so empowering. I was like a rainbow on steroids!
After six days, Riley was finally able to come home. I will never forget where I was when I got the call. If anybody was to ask me if I have ever won anything, my answer would be 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 ever had to do in my entire life.
As we were being discharged a doctor told us that they had received the chromosome blood work back. With this scared look on his face he confirmed that Riley did in fact have Trisomy 21. My immediate reaction was a great big “YES!” with a fist pull down through the air. I can still see the doctor’s face. At first he thought I was confused and misunderstood him. Oh no, he was the one confused, not me. He and my husband both looked at me a little funny, but hey I’m used to that.
Riley is now six months old and she is the happiest baby I have ever known. She has defied all the books and the people that said she would be “delayed”. My daughter is right on track. She does physical therapy, speech therapy and a little massage therapy throughout the week. (Her physical therapist is continuously amazed by her and can’t believe she has Down-Syndrome) Riley loves music, swinging in her swing and being talked to. But, she absolutely detests baths! She also has two awesome big sisters who take such good care of her. I couldn’t be a more proud mother.
So, if you are blessed to have been chosen to have a baby with “UP” Syndrome, or you know someone who has… SMILE! It’s the best thing that will ever happen to you. It’s a shame that our society and doctors are blind to this. Oh well, Riley will open their eyes!
Jennifer has started a support group on Facebook for all those who have been touched by children with “UP” Syndrome. Check it out and join the movement!