Life in our house gets pretty hectic. There's a 2 year old, a 3 month old, 2 puppies, and 3 cats. There's a man child that doesn't think cleaning up the dog poop is important. And there's also a mom that can be a bit of a control freak. Those kids have appointments, those pets make annoying messes and don't listen, those parents don't always agree, and that house is an old, annoying "not what I thought I was buying" kind of mess. A nice chunk of my day is "correcting" pets and children...AKA yelling at pets and children. My poor neighbors hear a lot of, "NO (insert one of five names here)!!" Another big part of my day is cleaning up never ending messes that really don't need to happen. Why did the dogs pull the table cloth off? Why is Tank eating out of the litter box and spitting it out on the floor? Why is there pee all over the toilet and surrounding area? Who doesn't shut the shower curtain? Did they think the bathroom needed a shower too? The other day, I even left the house in just my socks.
Every parent goes through this. That's what we sign up for when we have kids and get pets. Every couple has their arguments. I still often find myself praying for an easier day. Pleeeaaaase can the kids take a nap at the same time so I can put some wash away? Can Lillian leave the sleeping baby alone for more than 5 minutes so we can have some mom and Lilly time? Can she NOT act like a mean 13 year old girl when I try to help her with things? Why is everyone throwing a fit at the same time? No reason for them to be screaming like this....And then sometimes I join in and yell too.
I am lucky to have always been able to keep track of the so many good and amazing things that happen. Whether it be by posting about it, taking a picture, or recording a video. With all of our social networking and phones that I still think are capable of too many things, it's so easy to capture what is happening in our lives and share it with people. This helps on those days that you just can't get anything accomplished.
Andrew and I essentially met on Facebook. That's cheesy and whatever. But since most of our communication was through messages on Facebook, I still have all of them. I have all the first little moments that brought us here. So when I feel like I just can't stand him anymore, it's nice to go back and see what made us love each other in the first place. We are those same people, just in a different situation. It's easy to forget what pulled us together, but because I still have it all in my inbox, I get to relive it.
We are both constantly looking back on pictures and videos of both of our girls. While it makes us realize how fast they grow up, we are always able to see them reaching their milestones. I don't need to remember why I love my kids. But it is nice to go back and smile at all of those videos and pictures after a day of nobody getting along.
It's also awesome to see how far Lillian has come. I know we will love this with Maddy too, but we have watched Lillian try so hard for quite a few things and she has always proved she can do anything. Right now we are struggling with basic signing and it gets frustrating because I know she can do it. Then I get to watch old videos of her bear walking when we wanted her to stand and walk properly. Back then it felt like it took forever. One day, she just started running into her dad's arms. We spent an entire morning taking videos of her running to each of us to tackle and hug us. She did it on her own terms the way she wanted to. While I know she will reach all of her goals, seeing how she did it in the past makes it easier to keep trying today.
Today is one of those days. I'm typing this over the course of two hours with one hand while I sing and sign with Lilly, feed and burp Maddy, get dogs off the sofa, and shoo cats from the counter. I had half a cup of coffee and a cookie for breakfast, which is actually good compared to most mornings. I forgot to put on underwear this morning. And we are still waiting to have our new furnace installed towards the end of October in PA. Stressed much? But now I have this post as a reminder to look back. We all need to remember why we do what we do.
Wednesday, October 22, 2014
Thursday, October 16, 2014
What Lillian Wants You to Know...
October is pretty packed when it comes to awareness. Obviously, our favorite cause is Down Syndrome Awareness. We do a pretty good job surrounding ourselves with people that love and accept Lillian, but through social networking like Facebook we still find a lot of ignorance in our world.
It is easy to get angry. It is easy to be upset. I have every reason to be frustrated at people that don't understand my daughter and her diagnosis, especially when it leads them to say something rude. But at the end of the day, I need to realize that it is pure ignorance. They don't know any better. Yes, there are people that are just malicious and can't be helped. There are also a lot of people that have good intentions but have the wrong or no information. This usually comes in the form of, "She doesn't look like she has Down Syndrome, she looks fine..." Or, "She acts normal, she does what other kids are doing. Maybe she doesn't have it as bad as other people with DS." The MOST annoying one, "Have you ever had her retested? Maybe there was a mistake."
😳...✋...😑...
Listen. My daughter's blood doesn't lie. My daughter is who she is. Now that that is out of the way, I understand that the people that can say these things just don't know what Down Syndrome really means, is, or what it looks like. They are given the same outdated information that so many parents receive when getting their diagnosis. Can you blame them for being surprised at how well many of our children are doing? In the past, Down Syndrome meant low quality of life living in an institution. (Insert huge thank you to every family that went against that and proved our kids are worth raising and loving and letting the world see what they are really capable of.)
I can keep going with nice facts about what Down Syndrome means today and what that means for the future, but I think it would be better to talk about what Lillian would like you to know about her.
Lilly would want the world to know that she isn't beautiful DESPITE having Down Syndrome. She is gorgeous because of it. Her pretty eyes and cute nose are directly related to DS. Just as someone's red hair or blue eyes can make them appealing, Lillian's Down Syndrome is part of what makes her so adorable. She also isn't an exception. She is no doubt amazing, but that's because she's my baby. The things you see her doing are the same things every other kid with or without Down Syndrome will do.
Down Syndrome doesn't mean she suffers. Her little sister doesn't suffer. Her parents don't suffer. Her family doesn't suffer. We are all blessed to have her in our lives just as we are blessed to have her little sister Maddy. Her personality doesn't scream Down Syndrome. Instead it says, "I'm Lilly and I'm cute and I ROCK."
Lillian has the same feelings as anyone else. She isn't too stupid to understand. She doesn't need to be treated differently than others. Down Syndrome isn't an excuse to let her get away with things or treat her badly. She knows which people will let her do whatever she wants, which ones will fall for her sad eyes and which ones tend to give in to her cute acts. She's very smart and knows who to play and how. Lillian is a wonderful big sister, daughter, grand daughter, niece, cousin, and friend. She is determined and strong willed. Lilly is smart and witty. She is strong and always ready to dance or play.
Most of all, she wants you to see her for who she is. She does have Down Syndrome, and this is what it looks like. Accept that. Embrace it.
It is easy to get angry. It is easy to be upset. I have every reason to be frustrated at people that don't understand my daughter and her diagnosis, especially when it leads them to say something rude. But at the end of the day, I need to realize that it is pure ignorance. They don't know any better. Yes, there are people that are just malicious and can't be helped. There are also a lot of people that have good intentions but have the wrong or no information. This usually comes in the form of, "She doesn't look like she has Down Syndrome, she looks fine..." Or, "She acts normal, she does what other kids are doing. Maybe she doesn't have it as bad as other people with DS." The MOST annoying one, "Have you ever had her retested? Maybe there was a mistake."
😳...✋...😑...
Listen. My daughter's blood doesn't lie. My daughter is who she is. Now that that is out of the way, I understand that the people that can say these things just don't know what Down Syndrome really means, is, or what it looks like. They are given the same outdated information that so many parents receive when getting their diagnosis. Can you blame them for being surprised at how well many of our children are doing? In the past, Down Syndrome meant low quality of life living in an institution. (Insert huge thank you to every family that went against that and proved our kids are worth raising and loving and letting the world see what they are really capable of.)
I can keep going with nice facts about what Down Syndrome means today and what that means for the future, but I think it would be better to talk about what Lillian would like you to know about her.
Lilly would want the world to know that she isn't beautiful DESPITE having Down Syndrome. She is gorgeous because of it. Her pretty eyes and cute nose are directly related to DS. Just as someone's red hair or blue eyes can make them appealing, Lillian's Down Syndrome is part of what makes her so adorable. She also isn't an exception. She is no doubt amazing, but that's because she's my baby. The things you see her doing are the same things every other kid with or without Down Syndrome will do.
Down Syndrome doesn't mean she suffers. Her little sister doesn't suffer. Her parents don't suffer. Her family doesn't suffer. We are all blessed to have her in our lives just as we are blessed to have her little sister Maddy. Her personality doesn't scream Down Syndrome. Instead it says, "I'm Lilly and I'm cute and I ROCK."
Lillian has the same feelings as anyone else. She isn't too stupid to understand. She doesn't need to be treated differently than others. Down Syndrome isn't an excuse to let her get away with things or treat her badly. She knows which people will let her do whatever she wants, which ones will fall for her sad eyes and which ones tend to give in to her cute acts. She's very smart and knows who to play and how. Lillian is a wonderful big sister, daughter, grand daughter, niece, cousin, and friend. She is determined and strong willed. Lilly is smart and witty. She is strong and always ready to dance or play.
Most of all, she wants you to see her for who she is. She does have Down Syndrome, and this is what it looks like. Accept that. Embrace it.
Friday, March 21, 2014
World Down Syndrome Day 2014!
There are so many different ways you can celebrate kiddos and adults like my Lilly today. Some of you will show your support with t-shirts, bracelets, blue and yellow ribbons, or crazy socks. Many of you will "like" and "share" pictures and videos that all of the different DS awareness pages are posting online. All I ask anyone to do today, is take a minute or two to really learn why Lillian isn't any different than you.
A big update on Lilly is that she has started walking. Out of the blue, just started taking steps to me and her dad. She is so proud of herself when she gets to where she's going! It makes us so proud.
When we showed her physical therapist what she could do, she was of course ecstatic, but she said something that was so awesome and true. She told me that her help didn't do anything for Lillian but show her how to do what she was already destined to do. Lillian was always going to stand, walk, and run. While we worked with her to find the best ways to do it, she achieved her goals on her own terms and in her own way. Just like she was always going to. In my own mind, I know that Lillian will do everything she wants to do. It's very refreshing to hear someone else put it in those words, though. It's also the simplest way to explain why Down Syndrome is nothing to be afraid of. While it may take Lillian and others with this diagnosis a little bit longer to complete their milestones, they WILL get there.
Lillian isn't happier than other babies because she has Down Syndrome. She isn't special because she has Down Syndrome. She also isn't stupid because she has Down Syndrome. Lillian is Lillian.
Lillian is silly, sassy, cuddly, and hilarious. Lilly is beautiful. She loves yogurt and fruit snacks. Lillian dances as soon as she hears music. Her favorite shows are SpongeBob, The Bubble Guppies, and WallyKazam. She demands attention because she looooves to be in the spotlight. Her puppy is her best buddy, she kisses him the same way he kisses her and gives him all of her socks and toys. Lilly hates when I do her hair, thank goodness the pebbles ponytail is adorable because that's the only thing she can't tear out. She loves bath time. Lillian knows when you're mad or upset, and she'll give you extra kisses to make you smile. Our Lillian is our world because she's our daughter and duh, you love your kids.
Oh, and Lillian happens to have Down Syndrome.
A big update on Lilly is that she has started walking. Out of the blue, just started taking steps to me and her dad. She is so proud of herself when she gets to where she's going! It makes us so proud.
When we showed her physical therapist what she could do, she was of course ecstatic, but she said something that was so awesome and true. She told me that her help didn't do anything for Lillian but show her how to do what she was already destined to do. Lillian was always going to stand, walk, and run. While we worked with her to find the best ways to do it, she achieved her goals on her own terms and in her own way. Just like she was always going to. In my own mind, I know that Lillian will do everything she wants to do. It's very refreshing to hear someone else put it in those words, though. It's also the simplest way to explain why Down Syndrome is nothing to be afraid of. While it may take Lillian and others with this diagnosis a little bit longer to complete their milestones, they WILL get there.
Lillian isn't happier than other babies because she has Down Syndrome. She isn't special because she has Down Syndrome. She also isn't stupid because she has Down Syndrome. Lillian is Lillian.
Lillian is silly, sassy, cuddly, and hilarious. Lilly is beautiful. She loves yogurt and fruit snacks. Lillian dances as soon as she hears music. Her favorite shows are SpongeBob, The Bubble Guppies, and WallyKazam. She demands attention because she looooves to be in the spotlight. Her puppy is her best buddy, she kisses him the same way he kisses her and gives him all of her socks and toys. Lilly hates when I do her hair, thank goodness the pebbles ponytail is adorable because that's the only thing she can't tear out. She loves bath time. Lillian knows when you're mad or upset, and she'll give you extra kisses to make you smile. Our Lillian is our world because she's our daughter and duh, you love your kids.
Oh, and Lillian happens to have Down Syndrome.
Tuesday, February 4, 2014
Becoming a "Second Time" Mom.
It's been a few months since I've posted on here. So I'll update on Lillian first.
Lilly has gotten her first two teeth in the past four months! She likes to use them when she's giving me kisses (ouch!) It is typical for children with Down Syndrome to get their teeth in late, and in different order. This has proven to be a challenge for her eating habits. She is able to self feed with her hands, but it's hard to find things she wants to feed herself since she hasn't had teeth up until now, and because she still doesn't have enough teeth to really grind her food. There are plenty of finger foods meant for toddlers just learning to chew or even gum food. Unfortunately, Lillian is a picky eater on top of the feeding issues that can come along with low tone and no (until now) teeth. Lilly will eat ANYTHING in yogurt or ice cream though :) Our Lilly Butt is also standing up by herself! She plays an adorable game where she stands up as fast as she can, holds her hands up in the air with her eyes big and wide, then falls on her butt and giggles like crazy when you say, "BOOM FALL DOWN!" She's entertained with this for as long as you play along.
We bought a new house! It needs plenty of work to get it to be what we want, but we're definitely loving all of the space. New house meant new...PUPPY! His name is Archer, and he's an Australian Shepherd mix that we adopted from a shelter. He's cute, and bad, and Lilly's new best bud.
And reading the title of this post, I'M PREGNANT!
We have been trying since Lillian was 3 months old to get pregnant. This was a pretty emotionally stressful time, as I wasn't having any luck. Then we had a miscarriage. Then no luck. But now, 20 weeks and baby is dancing up a storm in my belly! We haven't had an ultrasound to check the gender yet, that's scheduled in a few weeks. We also opted out of any prenatal tests. Same conditions as my pregnancy with Lillian...if we see something wrong in an ultrasound or I'm having problems, THEN we can test. Other than that, any baby of mine is MY baby and will always be MY baby.
I'm positive Lillian will be a fantastic big sister. She loves being with other kids, although she does get jealous when I'm holding anyone else's baby... But big sisters always pick on the little ones, right? ;)
While I'm totally excited, I have plenty of worries to go along with it.
What are some things that are normally on a "second time" mom's mind?
How am I going to manage a 2 year old, a newborn, a puppy, 3 cats, and a man child?
How many days a week will I be able to work without being totally exhausted?
Will my job respect wanting to work weekends and ONE day a week this time, since they scheduled me full time regardless of my availability change after having Lillian?
Will new baby have a decent sleeping schedule so I'm not dead during the day with Lilly?
All of those are things we knew we'd have to consider when we decided to try for our second. I'm totally capable of dealing with that. We can change our routines and schedules until we're all in a new swing of things. Even though I know we'll be just fine, I'm still allowed to be stressed out about it.
Then there's a few things that run deeper.
I'm terrified that Lillian will always be my favorite. I already love the baby growing in my tummy, but I feel like we've had such a unique bonding experience with Lillian after everything we had to go through in the first few months. I have no issue with staying up all night to look at her and cuddle her, not just because she's my gorgeous baby, but because I know if she would've been given to a different set of parents...she might not be here. I know after how long it took to get pregnant, that EVERY child is a gift and I'm incredibly lucky. But I also know that many of the same parents that have gone through the same troubles to have their child, want their baby to be what everyone imagines as perfect. Many of them would also abort a baby with DS.
I know we will always do our best to raise our children to be admirable little people. I know I won't treat one differently than the other. Where Lillian needs extra attention, baby #2 will have the same attention and vice versa as to not leave anybody out. But what happens when our little babies become young adults? They learn to think totally for themselves. Sometimes, no matter what you do, you can't determine what morals and priorities they will have. What happens if baby #2 isn't that perfect sibling that embraces their sister's disability, instead of despising it?
I have this picture in my head of a little brother or sister that is totally in love with a big sister that is also totally in love with them, and they don't notice the differences until they're older. Then, when they learn what those "differences" are, they won't care. They'll give everyone that has anything mean to say about their sister a mouthful, and Lillian would do the same for them. They will play and laugh and learn together. They'll be each other's best friend.
While I know that this is the most likely outcome ^, I still have the same doubts that I feel any first, second, or third time momma does.
Those of you with more than one child, even if neither have any sort of disability, how did you cope with these type of worries? And how many of them actually came true?
Lilly has gotten her first two teeth in the past four months! She likes to use them when she's giving me kisses (ouch!) It is typical for children with Down Syndrome to get their teeth in late, and in different order. This has proven to be a challenge for her eating habits. She is able to self feed with her hands, but it's hard to find things she wants to feed herself since she hasn't had teeth up until now, and because she still doesn't have enough teeth to really grind her food. There are plenty of finger foods meant for toddlers just learning to chew or even gum food. Unfortunately, Lillian is a picky eater on top of the feeding issues that can come along with low tone and no (until now) teeth. Lilly will eat ANYTHING in yogurt or ice cream though :) Our Lilly Butt is also standing up by herself! She plays an adorable game where she stands up as fast as she can, holds her hands up in the air with her eyes big and wide, then falls on her butt and giggles like crazy when you say, "BOOM FALL DOWN!" She's entertained with this for as long as you play along.
We bought a new house! It needs plenty of work to get it to be what we want, but we're definitely loving all of the space. New house meant new...PUPPY! His name is Archer, and he's an Australian Shepherd mix that we adopted from a shelter. He's cute, and bad, and Lilly's new best bud.
And reading the title of this post, I'M PREGNANT!
We have been trying since Lillian was 3 months old to get pregnant. This was a pretty emotionally stressful time, as I wasn't having any luck. Then we had a miscarriage. Then no luck. But now, 20 weeks and baby is dancing up a storm in my belly! We haven't had an ultrasound to check the gender yet, that's scheduled in a few weeks. We also opted out of any prenatal tests. Same conditions as my pregnancy with Lillian...if we see something wrong in an ultrasound or I'm having problems, THEN we can test. Other than that, any baby of mine is MY baby and will always be MY baby.
I'm positive Lillian will be a fantastic big sister. She loves being with other kids, although she does get jealous when I'm holding anyone else's baby... But big sisters always pick on the little ones, right? ;)
While I'm totally excited, I have plenty of worries to go along with it.
What are some things that are normally on a "second time" mom's mind?
How am I going to manage a 2 year old, a newborn, a puppy, 3 cats, and a man child?
How many days a week will I be able to work without being totally exhausted?
Will my job respect wanting to work weekends and ONE day a week this time, since they scheduled me full time regardless of my availability change after having Lillian?
Will new baby have a decent sleeping schedule so I'm not dead during the day with Lilly?
All of those are things we knew we'd have to consider when we decided to try for our second. I'm totally capable of dealing with that. We can change our routines and schedules until we're all in a new swing of things. Even though I know we'll be just fine, I'm still allowed to be stressed out about it.
Then there's a few things that run deeper.
I'm terrified that Lillian will always be my favorite. I already love the baby growing in my tummy, but I feel like we've had such a unique bonding experience with Lillian after everything we had to go through in the first few months. I have no issue with staying up all night to look at her and cuddle her, not just because she's my gorgeous baby, but because I know if she would've been given to a different set of parents...she might not be here. I know after how long it took to get pregnant, that EVERY child is a gift and I'm incredibly lucky. But I also know that many of the same parents that have gone through the same troubles to have their child, want their baby to be what everyone imagines as perfect. Many of them would also abort a baby with DS.
I know we will always do our best to raise our children to be admirable little people. I know I won't treat one differently than the other. Where Lillian needs extra attention, baby #2 will have the same attention and vice versa as to not leave anybody out. But what happens when our little babies become young adults? They learn to think totally for themselves. Sometimes, no matter what you do, you can't determine what morals and priorities they will have. What happens if baby #2 isn't that perfect sibling that embraces their sister's disability, instead of despising it?
I have this picture in my head of a little brother or sister that is totally in love with a big sister that is also totally in love with them, and they don't notice the differences until they're older. Then, when they learn what those "differences" are, they won't care. They'll give everyone that has anything mean to say about their sister a mouthful, and Lillian would do the same for them. They will play and laugh and learn together. They'll be each other's best friend.
While I know that this is the most likely outcome ^, I still have the same doubts that I feel any first, second, or third time momma does.
Those of you with more than one child, even if neither have any sort of disability, how did you cope with these type of worries? And how many of them actually came true?
Friday, October 4, 2013
National Down Syndrome Awareness Month!
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!
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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