Wednesday, January 28, 2009

A Baby Story


My husband and I went to our 20-week ultrasound expecting to get a few pictures of our first child and then head off to the airport for a weekend away. We never made it to the airport… We spent the next 8 hours being shuffled from exam room to office, back to exam room. By the time we left the hospital we had undergone an amniocentesis and were told that Down syndrome was the best-case scenario for our child. According to the doctors, it was more than likely that our baby had a chromosomal defect that was “incompatible with life.”

We spent the next three days praying that our baby would be okay… we prayed for Down syndrome. Not only were our prayers answered, but we received the most incredible gift we could have ever hoped for – we received Lily.

Within minutes of hearing that our baby had Down syndrome, we also knew she was a girl and we gave her a name. We didn’t want to spend the rest of my pregnancy thinking about our “baby with special needs” or our “daughter with Down syndrome.” Instead we just thought about Lily Kathleen and what we could do to make sure she’d be as healthy as possible when she arrived, and we would be as ready as we could be to take care of her. First, we contacted NADS. Then we read books and talked to other parents – lots of other parents.

During those last months of my pregnancy we faced one challenge after another. Just two days after hearing about the Down syndrome, we saw a fetal cardiologist who told us Lily had a serious heart defect that would require surgery, possibly just after birth. Weeks later we heard from another doctor that there was a possible tumor on Lily’s brain that hadn’t been there before. I underwent an MRI and after many more sleepless nights, the test results revealed no tumor or mass. We felt like every time we came to grips with a diagnosis or prognosis, we received another blow from the doctors. But we continued to remain positive, and we made sure that our family and friends remained positive as well. From the moment we told them about Lily, we let them know that we were okay with the fact that our daughter had Down syndrome and would need heart surgery. Our positive outlook allowed our family and friends to share in our joy and excitement. So when Lily finally arrived, she entered this world surrounded by love and enthusiasm. We were all so eager to meet her and finally lay eyes on the little girl we already loved so much.

The day she arrived is one of the happiest days of my life. There was no sad news or awkward silence in the delivery room. There was a baby girl with the biggest cheeks I’ve ever seen and fingernails that looked perfectly manicured. She had bright red rosebud lips and a mess of dark brown hair. She was not premature as the doctors had said she might be, and she was not tiny and blue. She was well over 8 pounds and very pink, and she was breathing on her own. She may have had a serious heart defect and a chromosomal disorder, but she was perfect. She was exactly what we had prayed for…

Four months after Lily was born, she had open heart surgery to correct Tetralogy of Fallot and an ASD. I was terrified to hand her over to the doctors that day, but I knew in my heart that she would be okay. We had come too far in our journey to have it end so soon. Much to our delight and relief, she came through the surgery without complications and she was home in only four days. She may have been tiny, gaining less than 2 pounds in her first 4 months of life, but she was a fighter and she proved to everyone how strong she could be. She continues to show us that – when she barely flinches while getting her blood drawn, or asks for pretzels 12 hours after a tonsillectomy. She never ceases to amaze me.

Lily is now 3 years old and has a younger brother, Luke. My husband and I always wanted to have at least two children and have them close in age. We didn’t let Lily’s Down syndrome change our family plan. We agreed that as long as she was healthy we would go forward. So Luke arrived 4 months before Lily’s second birthday, and they are the best of friends. We were understandably nervous throughout the pregnancy, but felt confident that everything would be okay. Lily had already taught us that any child was a blessing who would only make our family happier and more complete.

I view Lily as my guiding light. She has led me to people I would have never met – incredible people who do incredible things. She has taught me to take life a little slower – and that by doing so you get to truly enjoy the journey and rejoice in even the smallest of accomplishments. She has shown me that every life is worth living – and that no part of her or any other individual is imperfect or flawed. She has illustrated bravery, perseverance and strength that rival most adults. And she has shown me that a bright smile can be contagious and can make even the worst day wonderful. Lily teaches me something every day, about myself and about others. I have direction and purpose now that she is here, guiding me to be a better mother, and a better human being.

Someday Lily may ask me if I ever wished she didn’t have Down syndrome, or she may even wish it herself. And I’ll explain that I would never want her to be anyone other than who she is, exactly as God created her. I can tell her that I wanted her always and I consider her one of the greatest gifts I’ve ever received. She is, after all, my answered prayer.

(Mother to Lily born 5/26/03)

Tuesday, January 13, 2009


Have you ever had somebody that just want to so mean and vistious to you? Well i know this lady that hats dogs! She absoulutly can not stand them, every time she sees one all she does is run and try to kick and sometimes she will just sit there ans scream. I think she is crazy. But on the other hand you have people that absoulutly loves dogs. They will leave food for you and just try to love any kind of dog that come around. Thos are the type of people i LOVE!

Let me tell you about this one story that i had with the women that hates dogs. Well one day my owner was walking me around they park, the lady that hates dogs just so happend to be there walking also. From there i just knew this was going to be a bad day. My owner had to stop and use the bathroom so she tied me up to a tree, which i hated haveing to do that. Anyways she walked passed me like two times but the third time she just looked at me and just started screaming, I did not not know what i had done because i did not chase or or snarl at her so, i guess she is jus syco or something. About 5 minutes later my owner came out and asked her what was her problem. She just looked at my owner and told her that she does not just need to have her dog on some tree because it could get undone and chase people. My owner was shoked at what she just said and just untied me and said come on braily. O that is my name by the way.

Thursday, December 4, 2008


This Christmas is going to be really different, but it still should be a great one. My family really does not get along with each other, so we are not going to get all together and have one great big Christmas. I kinda wish we would but, there is nothing I can do. There is no talking to my family. I love them all and I just wish they could all just get along and, we could have a great Christmas.

Friday, November 7, 2008

Today is Friday so it should probably be a good day. I probably will not have to work today so that makes it even better. I hope we win are varsity game today because all of are guys really want to win and I want them to win too. I will get to see my boyfriend today but that is not anything new i get to see him pretty much every day. I got paid today so now i have MONEY!!! I am happy :). Well that is all i can think about.

Wednesday, October 29, 2008

Halloween Ban

I think that they are making a big deal out of it. They should not punish everyone just because one kid wore a bad costume. If a kid wore a bad costume they should just make that kid change, and let all the rest of the kids wear their costume. Wearing costumes should not be band from kids Halloween is supposed to be fun not boring. Maybe they will see that they are blowing this thing all out of portion.

Wednesday, October 22, 2008


I have memories about my great grandmother. She dies when she was 92, if you ask me that is a long time to me. She was in bad condition so she stayed in a hospital bed at my Nana's, she lived there for a while. She had to get her legs amputated so that is why she had to stay at my Nana's. When she had legs she sowed every piece of clothes that she wore and when my Nana was little she made all her clothes to. For Christmas she made me doll, it was so pretty and it was amazing how she could do something like that. She was so funny when she had to stay at my Nana's, she would take all her clothes off in the middle of the night and when my Nana would wake up she would say "well mama what happened to your clothes", and she would say ("well Ruth i really don't know i guess they fell off me.") She really did not know what she was doing but she would say thing that made no since at all, but it would still be funny because it would be so true what she was saying but it really never happened quit the way she was saying it. I miss her very much and i love her and i will always no that she is watching over me at all time.

Tuesday, October 14, 2008

I Wish

I wish there was a law that said all people had to stay in there own business. This would be a good law because people need to stay mind their own business.

I think that this would be a good law because all this causes is conflict between people. People dont like when people get in their business if people wanted other people to know what is going on in their life then they would tell you. I think that people would get along much better if they would be so kind to stay in their own life. I guess this law would never happen but if it did it would be AMAZING!!!!