Moving Forward

In September, Ashley had her second baby, a little girl named Skylar. I was away at school when she had the baby, but everyone else in my family was at the hospital when she had her. It's the times like that that I really miss living at home. So far, Aubrey loves being around her little sister. Ashley takes lots of pictures of her girls, and Aubrey always smiles when she is with Skylar. Once again, the new baby has brought lots of joy and happiness to my family. I can't wait to spend more time with her over and the rest of my family over winter break.

Aubrey and her new baby sister Skylar.

Big sister Aubrey rocking little sister Aubrey to sleep.
With the support of her daddy, she is able to stand up!

Aubrey on her first day of preschool. Love her smile!

Today, Aubrey started her first day of preschool at a school called Easter Seals. This is a school that is reserved for those children with disabilities and special needs. Aubrey needs this type of care because the employees there are specialized to improve the lives of impaired children. She attends school Monday through Friday, from 9 in the morning until 2 in the afternoon. She even rides a bus to school, which she loves. The best part about this school is that it tries to give as normal of an education to its students as possible. Because Aubrey goes to school now, it allows Ashley time for herself and to take care of her new baby. This new routine will suit their family well.

My cousins and I got together to take photos over Thanksgiving break
as a Christmas gift to our grandma. This is the first time
we have done this, and it is because we are growing stronger
relationships with each other. 

Since starting college, I have been thinking about my cousin Aubrey a lot. I think about the journey she has been through so far, and I think about how much more she has to offer the world. Then, I think about my family and how this has impacted us. I have always been close to my family, but ever since Aubrey was diagnosed with this disease, we have become even closer. Ashley comes around the family more than she ever has before and that is because of Aubrey. The relationship everyone has with Aubrey is unlike any other, but the one thing in common is that we all love her unconditionally.
If there is one thing I learned in my life, it's this: No matter how terrible something can be, if you have your family surrounding you, you learn to cope with each other and eventually it brings you closer than ever before.

New Beginnings

It's been a couple of years now since Aubrey's diagnosis. Our lives continue on as they normally went; us kids went to school every day, and the adults went off to work, except for my cousin Ashley. Ashley had to quit her job in order to take care of Aubrey. Aubrey requires full attention from her mom, since she is now almost four years old and can't walk. She gets pretty heavy to carry, too. Her doctors want to look into getting her a wheelchair soon. I think this would make life a lot easier on Ashley and everyone who helps her out. Ashley gets lots of help from people in my family when it comes to taking care of Aubrey. Even though Aubrey can't speak for herself, it's obvious how much she loves to be around her family. I think because Aubrey has this disease, my family has grown an even stronger bond with her. The relationship I have with Aubrey is unlike any of the relationships I have with my other eleven cousins.

On a side note, Ashley and her husband Tom have talked for months now about having another baby. They feel that a new baby in the house could help lift their spirits and Aubrey's, too. While it definitely would make them happier it one way, it would be challenging in another. Aubrey cannot use the bathroom, walk, or talk. It is almost like Aubrey is a large baby. However, much to my surprise, my cousin Ashley became pregnant this month. My family was also concerned about the new baby becoming diagnosed with the same disease that Aubrey has. We learned that the chances of the new baby having the same disease was less than 1%. Of course, my family is so excited for Ashley and everyone has already offered to help her. As her pregnancy furthers, she will need even more help with Aubrey. Luckily for Ashley, she has a huge support system behind her.

Aubrey is so excited to be a big sister!

Family is Everything

We continue to learn new things about Aubrey every day. We now know a little more about Rett's Syndrome. This is a rare genetic disease that affects about 1 in 10,000-15,000 girls. It is caused by a mutation in the methyl CpG binding protein 2, which is responsible for brain development. So, a girl with Rett's Syndrome has a malfunction with this gene that helps her brain grow. There is also no cure for this disease yet. Aubrey's doctors are working the best they can to help her. So far they have given her glasses to help with her vision. Soon, she will get braces to support her legs. She is also visiting with a speech therapist to try to develop a sense of communication. Other occupational therapists come to her house to try and build up motor movements. Despite all of the therapy, Aubrey still tends to be a pleasant, happy little girl.

The past months have been difficult for my family and I, but we are coping together. We have spent the weekends together at my grandma's house to try and lift up Ashley's spirits. I have never seen someone so sad before; I feel terrible for her. I wish there was something that I could do to help her, but I think that having our family together all the time is helping her the most. It would be even worse to go through something like this alone, so it has never been so important to bring the family together. It's the times like these that make me realize how blessed I am to have my family in my life. We surely will not give up on Aubrey, we know she will be able to fight through this.

Aubrey showing off her new glasses!

Aubrey at her birthday party!

Aubrey constantly has her hands in this formation and brings them towards her mouth. This is one of the most noticeable signs of Rett's Syndrome.

A Turn for the Worse

Aubrey celebrated her first birthday a few months ago with her family, and you could tell how happy she was. The summer came and went, but Aubrey still couldn't walk. She couldn't even fully crawl, she just creeped and wiggled her way around. She had to get surgery over the summer for her ears; she got tubes put in to try to reduce the amount of ear infections she gets. Something else we are noticing is that she is digressing. Everything she was once able to do, she can't do anymore. She does not hold on to her own cup, and still isn't eating real food. She has a hard time standing against things with support, and cannot fully sit up on her own. It makes me sad because normally at this age she would be running around and talking, but she can't do that yet.

My cousin Ashley, Aubrey's mom, decided to take her to the doctors to address her concerns. The doctors became worried too, because this type of development was not normal. The doctors never really saw an 18 month old lack this many skills, and especially never saw an 18 month old lose all the skills she had. They ran several tests on Aubrey to see if there was a problem. It took months to hear a result, I guess it takes awhile to get results from a blood test for a baby. My whole family was so scared not only for Aubrey, but also Ashley and her husband Tom. Knowing that something could be wrong with Aubrey tore them apart, and it tore my whole family apart too. It became hard to focus on daily things knowing that something could be wrong with her. We prayed because that was all we could do.

A few weeks ago, we got results back from the tests. As it turned out, Aubrey was diagnosed with a disease that they call Rett's Syndrome. Ashley and Tom were completely devastated, as was my whole family. The doctors told them that this is an extremely rare form of autism that is only found in girls. If it is found in boys, it's deadly. After doing research, we found out that there is almost no hope that she will ever walk, talk, or do anything that other children can do. Her life expectancy is also only until about the age of 30. She will need to be in a wheelchair in a few years too. We are learning more and more each day, all we know right now is that she has Rett's and will most likely never walk or talk. This makes me very sad because I looked forward to doing so much with her, but now I probably won't be able to. Hopefully doctors can do something for my family, because right now this is the worst thing that could have happened to us.

Aubrey at her first birthday party.

Aubrey before her surgery.

This constant movement of her hands to her mouth is a sign of Rett's Syndrome. 

Aubrey having fun at the park with her daddy!

She loves her rocking chair!

Baby Steps

My cousin Aubrey is almost a year old now, and she is getting more fun to be around each time I see her. Her favorite thing to do is spend time around her mommy and play with her toys. She is starting to do things on her own, like hold her own bottles and stand up against the couch with support from another person. She hasn't crawled yet, but we think she will soon. Maybe by the time she is one years old, she will be walking. She says a few words, like mom and dad. She has been sick a lot with ear infections, but she is on medicine so we hope that she starts to feel better soon.

She is such happy baby and she makes my family so happy. She is the first great-grandbaby of the family which makes her have an even more special bond with my grandparents, aunts, and uncles. My mom and Aunt Jenny seem to be worried about how little development she has made. Despite the fact that she can lean against something with support and can hold her own bottles, my mom and aunt think that she should be doing a little more. We think it is just her bad ear infections that she gets because she always holds onto her ears and cries a lot. She does not eat much of real food yet because it is hard for her to digest. The doctors are not concerned, they say that some babies do not develop as fast as others. I am going to be seeing her over the weekend, I can't wait to play with her!

Here are some pictures of Aubrey over the past months:

Aubrey's 6 month picture

Aubrey smiling for the camera.

Aubrey can stand in her crib, as long as she holds on!

Cheering on her favorite team, the Steelers!

Her first trip to the beach!

The Arrival

This morning I woke up with a big surprise. Ashley went into labor early in the morning and delivered her daughter. I am so happy that the delivery went well and that everyone is healthy. My mom wouldn't let me miss school to go visit. She told me we were going after school. So, after my mom finished working we went to Mercy Hospital to meet my new baby cousin Aubrey. I was scared to hold her because she was so tiny, but my mom helped me. All of my aunts were at the hospital too. I love when all of my family is together. Who knew someone so small could bring together so many people? I can't wait until Aubrey comes home in a few days. It will be even more exciting to see her grow up and walk, talk, and play with her toys. I can't wait until the day when she learns my name and asks me to play with her. She is so cute, I hope I get to see her again tomorrow!

The Start of a New Beginning

Today started off like any normal day. I dreaded waking up at the crack of dawn, only to go spend hours in school and come home with hours of homework. I picked up my brother Nick from the bus stop and made him an after school snack. I am getting bored with this same routine. Nothing exciting has happened in awhile, especially at school. Something different did happen today, however, because my mom came home from work a little more excited than usual. She told me she just got off the phone with my cousin Ashley. Just a month before her 21st birthday, she finds out she is pregnant! I am so excited! This is the first cousin of mine to have a baby of her own. I can't wait to be a big cousin. I have so many cousins already and I can't believe that I am going to have another one! I can already tell that this new baby will bring my family closer; it's been awhile since someone has had a baby. I hope it's a girl so I can buy her cute dresses and clothes. My mom told me to remember that it doesn't matter if it is a boy or a girl, the only thing that matters is that the baby is healthy.

My cousin Ashley's sonogram of my new baby cousin