Thursday, October 18, 2012

Lillian Ainsley

 
This is my little angel, Lillian. The day I had her, my life had real purpose. I'm sure all parents feel this way!
 
 
Lillian and her dad, Andrew. You can't tell in this picture, but there are tears!


Lillian was born June 30, 2012 at 1:45 PM. It was the most exciting day of my life, not to mention STRESSFUL, and I'll never forget it! I've never seen anything so frickin' beautiful. I never thought I would love anything or anyone so much! The whole time you're pregnant, you think the same thing - that you love this little person more than anything in the world. Then you give birth to them, and the moment you see them, you love them even more!

We couldn't wait to bring her home for all of our friends to see our little creation. We were OK'd to leave on the second day of being in the hospital. Two days of terrible food. Two days of sleeping in an uncomfortable bed with an IV in my arm "just in case". Two days of poor Andrew sleeping in a chair. Two days of being away from home and away from friends and family. Yes, we were ready to leave!

My daughter's doctor came in to check on how she was doing. "How much is she eating? How many wet diapers? Dirty diapers? How is she sleeping? Good, good." He was checking her eyes, ears, mouth, muscle tone, and continued to tell me how great she was. Then, "So I'm looking at her eyes, and they kind of have an odd look to them. I think we should take some blood and test her for Down's Syndrome."


Not uh. You did NOT just tell me my baby has odd eyes. Those are THE prettiest eyes in the entire world. They belong to the prettiest girl in the entire world. So you're just a crazy guy. I was livid, but he followed that up with, "Don't worry, I don't expect anything to come back out of the ordinary but I don't want to miss anything." Fine, but I was still angry at him.

Since he decide to take blood at the time we were supposed to be leaving, we ended up being in the hospital until late that evening. We left. Stopped for some fast food that tasted like Heaven compared to what we were served all weekend. Andrew pulled over to look at our baby again and cried, "I just love her so much!" That was followed by a bunch of hugs. We were finally home and everyone that was dying to see her came to meet her over the next couple weeks.

 



She absolutely adores her dad!
 


About two weeks after we brought her home, I was getting groceries and stopping to get pizza when a nurse from her doctor's office called. She told me Andrew and I had to come in at 5:00, and stressed that Andrew NEEDED to be with. I called Andrew and told him we had to eat super fast and to be prepared because I didn't think they'd make us drive in there to tell us how pretty our Lillian is. He responded with, "Well that better be why they're calling us in there. Nothing is wrong with her."
 
 
He was absolutely right, she's perfect!
 
 
We sat in the waiting room for what felt like forever, I was sweating like crazy and was already having a hard time not crying. We got called back by her nurse, they checked her weight and length and told us how adorable she was. Those things usually make me very happy, but I knew why we were here and I was tired of people ignoring it. Finally, we sat down and her doctor handed us some papers on Down's Syndrome. He explained that her karyotype came back postivie for Trisomy 21. He told us this could be the best thing that has ever happened to us, and told us everything he could about her condition. I was crying the entire time and fed and played with Lillian, Andrew was a bit stronger and was the one asking questions. We were referred to a geneticist in Hershey and given information on Early Intervention. The doctor said we could stay as long as we needed before the drive home, and he walked out. We both hugged and bawled for a few minutes. I cried the entire drive home and again once we got home.


I Googled Down's Syndrome and found so many sites telling me to take the time to mourn the child I didn't have before I try to accept the child I do have. Seriously?! This made me more upset than anything I heard up to this point. I wasn't crying because I didn't love her anymore. I wasn't mad that she wasn't normal. I was crying because of the people that say those things. I'm only 20 years old, so my high school days aren't too far behind me, and I know how cruel children can be. Lillian is the best thing in my life, and I can't imagine anyone looking at their own child and thinking about how they didn't have the child they wanted, sydrome or no syndrome.
 

 
I couldn't have asked for a better child!

 
Lillian is amazing. We learned a lot about Down's Syndrome over the past few months. Like that it's common for them to have low muscle tone, which makes it harder for them to reach milestones as early as other children. Since the day she was born, she ate great and had a nice, loud cry. She is able to lift her head, roll to both sides, smile, and is starting to giggle! These things are happening exactly when they are supposed to, and she's even on the "normal" growth charts! At this point, it is very mild. That doesn't mean it will always go this smoothly. But our family is prepared to help her through anything!




 
She's growing up so fast already!
 

I know there are a lot of blogs about children with Down's Syndrome. That isn't the sole purpose of this one, but this is obviously a huge part of my life. I would like to see more people talking about how fantastic and NORMAL these children are, and I'm going to try to incorporate that with regular updates on our little girl. She has a huge personality and surprises us everyday, so you can expect to see those often.
 
 
Our little family!
 
 
If you or anyone you know would like to chat about these little miracles, whether to give or get support or just share stories, please contact me! We're looking forward to meeting other families going through the same process.
 
- Bethany




2 comments:

  1. Bethany, your daughter is adorable. She truly is a blessing. The love you have for her shows through your writing. I was diagnosed with Cerebal Palsy at the age of 2, I'm 30 now. I have lived an amazing and productive life because my family did not let the doctors diagnosis to label my abilities. Continue to shower Lillian with love. She is definitely a bright ray of sunshine. I look forward to more of your blog posts.

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    1. Thank you so much! It's so nice to hear how well you've done and that your family didn't let a diagnosis define you! I wish to see that more often, and it's awesome that even 28 years ago your family felt the same way. I can't believe that not too long ago, people like my baby were just locked away in hospitals instead of being given the opportunities they deserved. It's such an inspiration that you have had such a good life and you're still going! Our family is going to do everything we can to make sure Lillian can feel the same way when she's older :]

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