October is National Down Syndrome Awareness Month. My daughter has Down Syndrome and people are pretty uneducated on this diagnosis. I can't think of a better reason to start a blog!
I'll start with our story.
My name is Bethany. I found out I was pregnant when I was 19. I had just moved out of my parents because I'm stubborn and ALWAYS right, and had also just started a new job. Lillian wasn't -at all- planned. Andrew, my boyfriend at the time and now my fiancé, was very supportive even though both of us were upset/scared/worried. My pregnancy went great and there were no worries on our end or my doctor's. I didn't have any prenatal testing. I didn't ask, the doctor didn't advise it. I was not considered at risk because I am young and healthy, and our family history didn't point toward anything being "wrong" with our baby. I knew I didn't want any testing unless something went wrong during my pregnancy. Regardless of any results, I would never terminate a pregnancy and lose my baby.
Our princess decided to arrive two weeks early, the morning after we were finally moved into our tiny trailer and also the morning of a baby shower that Andrew's mom had put together for us. I remember being in some pain through the night and texting my mom about how annoying it was because I couldn't sleep, but I finally fell asleep on her later in the night and left her worrying that I was having contractions. Turns out I was! My water broke when I got out of bed (I thought I peed my pants, actually) and I decided I was going to get a shower and see if I could deal with the pain to get ready for the day.
My mom and grandma were both texting and calling me like crazy, trying to get me to go to the hospital. Uh, no way. I was only due in 18 days! I had stuff to do today. I finally called the nurse triage just to tell my mom that I didn't have to go in. The nurse told me I had to get in to labor and delivery ASAP. UGH. I told Andrew we had to get ready to leave and started getting all of our things together. He was in as much denial as I was, and decided it was time for breakfast and a shower before we headed to the hospital. I was rushing around with all of our bags packed and screaming at Andrew that we had to go. He was in no hurry, and told me to go out to the car and he'd bring the rest. I saw him come outside with a bag of chips and some Gatorade. Later on I'd find out he forgot Lillian's diaper bag full of clothes and the rest of her cool baby supplies. *sigh*
I got into the hospital and they made me get into a wheel chair. Really? They took us to an exam room and pretty much just left me there for like half an hour while I was yelling at Andrew to call my mom. He finally did after he realized there was really a baby coming today. The nurses decided it was time to give me something for pain but couldn't get my IV in correctly, so after 3 or 4 jabs I ended up with a bruise going up my arm from my wrist almost to my elbow. I think that was the worst part of the entire process, that stupid IV! They told me they would take me to a delivery room to give me an epidural.
I was still in my normal clothes, besides the gown over my shirt to cover me while we went to the delivery room. The nurse checked me, and told me it was too late for an epidural and I could start pushing. I DIDN'T EVEN KNOW I WAS HAVING CONTRACTIONS! Their monitor wasn't working in the exam room, and they couldn't figure out why I was in so much pain since they weren't seeing contractions. At this point, I've never been more scared of anything in my life. Andrew was on the phone with his mom telling her Lillian would be here today. I'm yelling in the background that I really really really really want this freaking epidural. My mom isn't here yet, I can't push without my mom here. MY DOCTOR ISN'T EVEN HERE YET!
My doctor came in to check me as soon as he got there, and told me he'd be right back after he got changed to deliver the baby. It felt like forever, but apparently I just push babies out pretty quickly because Lillian was here before he got back in the room. Three pushes and there she was! I heard her cry, and everything that was annoying the crap out of me up until that point just seemed like the best way to lead up to the best moment in my life. I couldn't believe that I was holding my own baby, I couldn't believe how absolutely beautiful she was. Nothing that you see or read can prepare you for what you'll feel when you meet your child. She was, and is, perfect.
Nobody told me that she had a few tell-tale signs of Down Syndrome. Not the first day, not the second day. I saw nothing wrong with my little lady. She had a strong cry, she took her bottle like a champ, she had a strong grip on our fingers, and she was using up diapers left and right. We didn't get to see her open her eyes, but that was because she was swollen from how fast I pushed her out. When my doctor told me that her eyes were slanted, I figured that was why. He said they would take blood to test before we were discharged, but not to worry because he didn't expect anything to come back positive.
I didn't hear from them for 2 more weeks. I didn't even think about it, because we were enjoying Lillian so much! She had so many visitors and she was already amazing us with how fantastic she is. There was never a second where I thought something might be wrong with her. I got a call from the doctor's office around 4:30 one evening while I was picking up pizza to take home. I knew it was probably really important...they close at 5 and I live about 45 minutes away so if they wanted me to come in they'd be staying late. The receptionist told me that Dr. Henning wanted to see us today and that Andrew had to be along.
I called Andrew on my way home to tell him we had to swallow the pizza whole and leave, and I told him what I thought we should be expecting to hear. Lillian has Down Syndrome. They wouldn't call us in like that to tell us she's totally fine. He said, "That better be what they're calling us for. Nothing is wrong with her."
I was terrified waiting for her doctor to see us. I knew what was coming but I didn't want to hear it and I didn't know what it meant for us. When he sat us down to explain what Down Syndrome was, I was already crying. I was holding Lillian, and kept trying to "see" what he was talking about. I couldn't tell that she had Down Syndrome. Our doctor left us alone to calm down before we left, and we both cried for a few minutes before we could get ready to go home. I was worried about what Andrew thought, and I was worried about what he thought I thinking. After we told our family, I asked him why he was upset. It turned out we were both upset because we didn't want Lillian to have any struggles, not because she was any less perfect in our eyes.
In the coming months I saw a lot of support groups online advising parents to take time to "mourn the child they lost before they could embrace the child they have." This drives me crazy. I did not lose anything in my daughter because of an extra chromosome. She is everything I dreamt of having in a child, and then some. Everyday, everyone around her can see that she's no different than any other child. I know that there are a lot of parents of children with DS that did have to go through this process to accept the diagnosis their child received. I don't blame them. I blame the way we saw people with disabilities before we had our children. When you're planning a family, you're planning on your child excelling at everything they do and leading what everyone generally thinks is a normal life. Shame on us for not realizing, until now, that having a family enhanced with Down Syndrome is just as fun and normal as anyone else's family!
Even worse, I learned that out of every 10 babies diagnosed with Down Syndrome in the womb, only 1 is born. This absolutely breaks my heart. I understand that there are some people who will never sway when it comes to a child they want to keep...but I also feel that most of these parents wouldn't have terminated those pregnancies if they had real information on what having a child with Down Syndrome is like. To be honest, it will be hard. Your child may have heart issues, ear infections, and get sick during flu season. This is true for any child. They may be stubborn, get angry easily, or very set in their ways. This is true for any child. Your baby might have low muscle tone, have reflux, or not be able to feed properly at first. This is true for any child. But I can guarantee that your new baby will love you with all their heart regardless of what you look like, how you talk, or what assistance you might need to reach your goals. This is true for any child, DS or no DS.
My Lilly is 15 months old now. She laughs, cries, and yells at me. She says "dad-dad" and "bob-bob (which we think is for SpongeBob)" and I'll get a "mama" when she's trying to make it impossible for me not to give her the only spare second I had in the day. She is silly. She plays peek-a-boo, claps, and throws her hands in the air when we ask her how big she is. She dances and LOVES music. She's walking around on all fours and pulling up to stand on everything in the house. She's hilarious. She has the most amazing eyes, the cutest little nose, and the most adorable chubby cheeks.
Lillian has her favorite food, toys, and shows. Sometimes, she throws fits. Most times, she loves to cuddle. She terrorizes her cats and loves to throw their food and water all over our kitchen floor. To her, the best toys are all of things you don't want a baby to get their hands on...like the trash cans, game consoles, and DVDs. If you've been around small children before, this will all sound familiar to you. She's just like every other "typical" baby. The purpose of this post today, is to show anyone reading that there's nothing to be scared of in Down Syndrome.
She falls behind on a few things, but this is something that can happen to any child. There are programs in place in our county to help any child that is eligible through their evaluation. Lillian automatically qualifies because of her diagnosis, but any child can be tested and if they fall behind on two or more areas of development they can receive help through Early Intervention. Early Intervention has connected us with 3 therapists that are showing us how to get her up to speed and we've already seen improvement in just a couple weeks. Therapy sounds scary, I know. But her therapy sessions are really just hour long play time.
I have no worries for my daughter. I know she can do anything she sets her mind to. The only thing I'm afraid of, is someone hurting her feelings. I know it happens to everyone at some point in their life, and I'm sure every parents hates it. But when somebody calls her "retarded" it will be because of the way she was born, there's nothing she can do about it. The day it happens, it will break my heart. I'm sure it'll hurt me more than it hurts her.
There is no reason for any part of society to be cruel to individuals with Down Syndrome. I do believe it gets better everyday as people are learning more about DS. Parents of children with Down Syndrome are sharing their stories, and people are learning that having a baby with Down Syndrome is not the end of the world. Young people with DS are going to college and sharing their own stories with us to let us know they are VERY capable of living in our world. If we all continue to share and learn, I believe we'll soon be in a world where my daughter will be treated like she's no different than anyone around her.
The entire purpose of this blog is the share our life with Lillian with all of you. I hope to let everyone see how "typical" Down Syndrome can be.
Bethany
This is what I'm doing for National Down Syndrome Awareness Month, here's a list of things you can do!
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