Ava's Blog

The Toy Library

2012-02-07T11:15:00.000-08:00

We have been working with a SFU student these past few weeks to help her with some school credit. It has been fun and Ava is really enjoying working with her. SFU has a lending toy library where we have been working, it's in a beautiful new building on campus. Ava loves playing in the library and taking long walks up and down the stairs.

Here she is riding a bike!

I just love participating in projects like this. it exposes her to new and wonderful things

while educating on her syndrome =)

AMAZING

2012-01-13T18:27:00.000-08:00

I can't believe it, another year has gone by and my Ava is another year older.

Six years old and so full of love and laughter, she loves life like no other person that I know.

AMAZING,

that's my word to describe her,

because she is in everything she does.

Happy 6th Birthday my beautiful, amazing daughter!

I cannot wait to see what wonderful magic you do this year!

Just wanted to share

2012-01-03T10:14:00.000-08:00

I Know Different
It was written by Tricia Proefrock

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.

I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.

I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

BUT I KNOW DIFFERENT MOMMY.....
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

Very Beautifully written!

Happy New Year!!

2012-01-02T10:57:00.000-08:00

To all of our great family, friends, teachers, and therapists that have given your love and support over the years, we love you and appreciate you, and may you all have a fabulous 2012!!

Ava had a great Christmas, even being sick for a few days. She really loved the wrapping paper this year.

Christmas Morning!

Ava is playing with her brother's car and track set. She enjoyed ripping it apart =P

Probably the next time I will have a post Ava will be SIX! Where has the time gone? I'll post an update after her party =)

I guess...

2011-12-22T10:40:00.000-08:00

that I am just too positive, too nice and too naive. I have always tried to maintain the positive outlooks of raising a child with special needs, especially one with an extremely rare condition. A syndrome of which, for the most part is unknown, and a future that is based on a daily basis. Because of that, my conversations with people mainly lean to the good and to the accomplishments that make me such a proud mother of a little girl that is forging her way through life the best she can. Her blog has chronicled her life these past five years, and I have tried to make sure that there was something good in almost every post.

I guess that makes me stupid not posting about all the negatives, to expect some people to see exactly how hard it is to have a child with disabilities like Ava. They see me as getting special treatment, that I get everything handed to me. THEY are dead wrong. I have quit my job of almost ten years, I have put my life on slow motion, I have BUSTED my behind making sure that Ava gets every single bit of therapy, insurance, program, doctor, etc that she needs and deserves, to have a go at a life that is some what normal. For example, people don't know that at almost six years old and 60 pounds she still has the mind of one year old. Physically it is so much more demanding on my body to help her do just everyday things, but then if she has a fit it is 1000 times worse. It is even difficult for my husband to handle her, when she has her mind made up, because the older she gets, the more super human strong she gets also. Unless you walk in my shoes you will never fully comprehend what I go through, what I have done to ensure that she has a place in this world. I would never, ever change Ava, for that she is my heart and soul just the way she is, but let me ask you this, would you trade one of your perfectly healthy children for one that had disabilities like Ava? Would you be willing to change places with me so that I could have a conversation with my daughter and ask her what she would like to do today? Or what her favorite color is? Or how about that I could hear her say Mama and tell me I love you. How about so I could leave her alone for 5 seconds and not worry about what she might be into?
The questions are infinite.

I am the mother of a special needs child and I am proud of it, for it has made me grow into the person that I am. I try to see life as it is through Ava's eyes, as just the smallest thing brings a smile to her face, or brings forth a cute little giggle. She will never know the insane craziness of a "normal" life, and all the turbulent emotions that come with it. Her life will be fulfilling and happy because of the people she has surrounding her will do everything in their power to make it so. I will make sure of that.

Be thankful for what you have and have some compassion and understanding for others that may have a different situation. Do not assume you know what their life is like, because it is probably not even close. Don't be so blind that you only see your own blessings and not the blessings of those that surround you, you will miss out on some beautiful sights!

Recent Pictures

2011-11-22T12:23:00.001-08:00

Here she is snuggling with her dog Emmy.

She was a little fairy princess for Halloween this year.

Playing in the first snow of the season.

One of her fall pictures

Ava made the paper!

2011-10-20T19:45:00.000-07:00

Our recent trip to Florida was featured in our local newspaper. It was beautiful and very well written.

Mr. Justin Eger did a fantastic job!

Here is the Article

Family offered once-in-a-lifetime trip by Sunshine Foundation
By Justin Eger
of Mainline Newspapers

Ava Moreland is just like any other little girl. At just five and a
half years old, she loves to ride horses, swim, and goes to school at
Penn Cambria every day. She enjoys time with her mother, father, and
older brother, too, especially after a recent trip to Florida to
explore the wonders of Sea World, Universal Studios, and Disney’s
Magic Kingdom. But for Ava, the trip is especially magical, because it
was provided to her through the generosity of the Sunshine Foundation,
an organization that does whatever it can to answer the dreams of
chronically ill, seriously ill, or physically challenged children
whose families cannot fulfill their requests due to the financial
strain that child's illness may cause.

You see, Ava was born with a a rare chromosome disorder called
Kleefstra Syndrome, formerly known as the much wordier and scientific
Chromosome 9q Subtolomere Deletion syndrome. Kleefstra syndrome is a
rare genetic condition in which a tiny piece is missing from near the
end of one of the body’s 46 chromosomes. The missing piece includes a
gene called EHMT1, and its absence is believed to cause the major
symptoms of the syndrome, which in Ava’s case include developmental
and physical delays. This means that Ava will never be fully
independent, and life with her is just a little different than that of
your average child, just one of 200 people in the world with the
syndrome.

“Ava is a very remarkable little girl that makes everyone love her
with just one smile,” said Ava’s mom, Maria, who has been blogging
about life with her daughter since Ava was about one year old on the
website avamoreland.blogspot.com. “I have always called her my social
butterfly. Even though she cannot talk, she still wraps you around her
little finger. She is such a joy to be around and every accomplishment
she has, however small it seems to someone else, is absolutely huge to
us.”

Seeing what a wonderful and special little girl Ava is, and seeing how
much her family loves and adores her, a friend recommended the
Morelands to the Sunshine Foundation, based in Eastern Pennsylvania.
Representatives of the wish-fulfilling organization met with the
family and ultimately offered the Morelands the trip of a lifetime, a
chance to visit Sea World, Universal Studios, and Disney’s Magic
Kingdom for one exceptional extended weekend.
“It was wonderful,” Maria said, explaining how much Ava enjoyed Sea
World and the assorted aquariums, as well as getting close to the
dolphins, seeing the penguins, and even a steamboat ride. She also
enjoyed the chance to get in the hotel’s pool every day and swim until
her little heart was content.

“There were some things she didn't like also,” Maria added. “Like The
Grinch and the Cat in the Hat. Pretty much any costumed character, we
had to make a wide berth around.”

Despite dodging a few costumed critters, the trip was a joy for Ava,
Maria, dad Frank and brother Jason, an opportunity that they family
might not have been able to enjoy without the help of the Sunshine
Foundation. So inspired were the Morelands by the generosity offered
by the Sunshine Foundation, Maria hopes to have a fundraiser in
support of the organization in the next year or so, planning to give
back in some way, however small, to the people who brought such
happiness into her daughter’s life.

“It’s a long, hard journey we’re on, and I want to do whatever I can
do to make life better for her,” Maria said o her little one. “We
definitely are thankful to the Sunshine Foundation for this
opportunity, and for recognizing how special Ava is to us and everyone
she meets.”
To keep up with Ava and her family, check out
avamoreland.blogspot.com. To learn more about the Sunshine Foundation,
please visit www.sunshinefoundation.org.

Thanks again Justin!!

Ava's Dream Vacation

2011-09-27T13:28:00.000-07:00

Thanks to the Sunshine Foundation, they picked Ava to have a dream vacation to Disney in Orlando! We spent four wonderful days in Florida, going to Universal Studios Adventure Land, Sea World, and Magic Kingdom. Ava loved the plane ride and giggled most of the time on the way down. We stayed at the Sunshine Foundation's Dream Village, in the Keebler Elf Cottage. It was super cute and very cozy, and really close to all the theme parks.

The very first thing she finds in the cottage are the golf clubs for the miniature golf course, she played with those all weekend.

On the Sr. Seuss carousel

Keeping her eye on the Grinch, she did not like the costumed characters.

Golfing....again, lol!

Watching the Sea world dolphin show.

playing in the sand

Out like a light after Sea World

The Elf room for the kids, very cute!!

Tired after the first day, and crashing with her baby and Mickey.

Sweet moment with Dad.

At Magic Kingdom

Beautiful, even in the heat and humidity.

It was so hot in Florida, our best buy was this water bottle with a fan, it really helped out a lot!!

Sunday at the Magic Kingdom, it poured down rain, but Ava is staying dry.

Trying on some Halloween Mickey Ears

On the plane ride home =)

We would just like to thank the Sunshine Foundation for all that they have done for us, and for all the families that they have helped over the years. They are a great organization, who truly care about our special children!!

http://www.sunshinefoundation.org/dreamvillage.html

First Day of School

2011-08-29T18:19:00.000-07:00

Well the first school morning went off without a hitch. Ava seemed really excited after I fed her breakfast and got her all dressed and ready to go. We walked her big brother to the bus stop and then back home in time to get on her van. After five and a half years of being my constant companion, it was a bittersweet morning sending her off to school full time. I guess my baby girl is growing up! I am sitting here typing this and waiting anxiously for her to get home for I cannot wait to see her and what it is that she did today!

When she got home, I could tell she had a long day because she didn't even try to fight me about going in the house. Her teacher wrote that she had a good day today, she just got a little tired towards the end of the day. She held out until 7:30 and then she was out like a light. Tomorrow is school and then the new session of horseback riding! I can't wait to see her on the horse again after these last few weeks off.

Hard to Believe...

2011-08-20T16:32:00.000-07:00

Hard to Believe...
.....that school is right around the corner! Another week and she will be in school full time. I know that she will be so happy to be busy all day long. I will miss my baby girl terribly during the day, but I have to let her grow up sometime.

Hard to Believe...
.....that Ava had her last week of horseback riding, what a difference a few weeks make! She walked right up to the horses without being so terrified, then rode Lou like a champ, even sucking her thumb at one point! She is really enjoying it now, and we can't wait for the fall session.

Hard to Believe...
..... that she is getting better at dancing, but she sure is! Check her out!

So Proud!

2011-07-28T19:05:00.000-07:00

Every week she is getting better and better at this! This week it only took us a few minutes to get her

re accustomed to the horses and with just a little resistance she was on the back of her horse, riding solo for the first time. We are so proud of her and I know that I say that a lot, but it's the truth. Every small accomplishment she does just makes our hearts swell with pride. Five years ago we were not even sure what things Ava would be able to achieve and to look at her now, make tears well up in my eyes. She has worked so hard to get where she is now and she just keeps pushing. It always brings me great joy to come here to her blog and tell the world what she has done. Sometimes I'm a little late on it but that's because she keeps me busy =)

Therapeutic Horseback Riding

2011-07-13T08:45:00.000-07:00

For the past few years my sister and I have been looking for a place to take Ava horse back riding. After calling around to several places we finally found a place that would accept Ava! So yesterday Ava, her dad and I loaded up in the car and made the drive to Bedford county for her first lesson.

When we first pulled in Ava wasn't too sure about being in a new and quite big, strange place. The building was huge and the horses were neighing and stomping. I thought she would fall in love at first sight with the horses seeing that she just LOVES animals. However that just was not the case. We walked over to the area where the kids were riding. She clung onto her dad for dear life, petrified. I wasn't sure how the everyone was going to react to her being so scared but I was completely amazed. The owner and all the people working with Ava gave her nothing but compassion and patience (that includes my husband, what a great job honey <3). For the next two hours they worked with her, waiting for her to come to the horses on her own terms. She stared at the little pony for awhile then she watched as the other children were riding and having fun. Eventually she walked back into the building on her own and continued to watch everything going on. With a bit of help, she then proceeded to the small pony again and petted her and eventually bushing her with the brush. At that point they tried putting her on the pony again, which just was not happening for her. So they left her brush her some more before we left.

I just have to say that I was just blown away at how good she was treated and that these people are truly something special. We look forward to working with them in the coming weeks and I know that with their loving guidance Ava with flourish and actually ride one of the horses!

here she is clinging onto her dad...

Getting closer to the pony..

Finally brushing and petting the pony!!

thank for reading
love,
Maria and Ava

Graduation Day!

2011-06-14T19:29:00.000-07:00

On June 8, 2011 Ava graduated from the IU8 preschool. We watched her do some circle time and sing some songs. She was a tad bit shy being there were so many people about, but I think she did great!! I am just so proud of her and it makes my heart sing to know that she is progressing enough to move onto the big school.

Here are some pictures from the graduation.

YAY Ava we are so PROUD of YOU!!

Happy Jumping!

2011-06-06T17:55:00.000-07:00

Ava has always loved to play on the trampoline and here she is today jumping and running around like a crazy girl, just loving life. This is so good for her balance and coordination too!

Thank You

2011-05-28T09:28:00.000-07:00

Ava will be graduating from her IU8 class very soon and it's bittersweet. She will be moving onto the next step in her education while leaving behind a huge support group that will be greatly missed. These wonderful people have loved and supported Ava for the past two years and have taught her so many new and amazing things. As we look to the future we will never forget the ones that have gotten her to where she is now. You are all angels in my eyes and as I shed tears while saying good bye, they are ones of absolute gratitude.

Busy weekend!

2011-05-04T05:58:00.000-07:00

We had a busy weekend with lot's of pictures. Ava went to the park to play and then she went to the sportman's club to watch her brother fish .

Great Day Today!

2011-04-11T18:42:00.000-07:00

Today Ava and I went to the middle school to observe a Life Skills class. I am so impressed with all of the teachers and staff involved. Not once did I have any doubt about sending Ava to kindergarten next year. She fit right in with the kids, who were just wonderful!! They played with her and included her in everything they did. All of my questions were answered and I was completely put at ease with any fears I had.

It took Ava a little while to warm up but then she turned into her old social butterfly self. By the end of the meeting she was such a little ham, walking around like she owned the place. She is going to have so much fun next year, I just know it. One more IEP meeting left and then hopefully I'll know the rest of the details for her upcoming school year. =D

Ava and Emmy

2011-03-15T06:27:00.000-07:00

Over the weekend, our family was expanded with the addition of Emmy. She is just the sweetest chocolate lab puppy you have ever seen. Jason and Ava are just in doggie heaven right now, they both love her so much already. Ava has even added some new words to her vocabulary already, stay and no ( well she points and says OOOO) We are very hopeful that Emmy will help Ava expand her horizons, and be a friend to both my children for a long time to come.

She just loves to hold her in her lap...

and use her as a pillow...

hang out on the couch together...

and talk and play ball.

A snow day

2011-02-14T19:50:00.000-08:00

Well things have been a little slow on here, so I figured I would do a picture post. We haven't really played in the snow much this winter because it has been so cold, but there was one day last week we were able to get out.

Bundled up

watching her brother sledding

Out for a sled ride.

Happy Winter!

Kindergarten first eval

2011-02-01T06:33:00.001-08:00

We had Ava's kindergarten eval yesterday, which just led us to have another eval in March or April. I can already tell that she is just going to LOVE school, she was so excited to see all the kids marching down the hall! She had a blast walking around and talking to all the teachers. Even if we left there not knowing very much, we were still very happy to see her so excited!

Updated Blog site

2011-02-01T03:36:00.000-08:00

Today I updated the blog to make it more user friendly and hopefully a bit faster. I removed quite a few things and added the stand alone pages in the top left hand corner. There is now a picture post, a video post, a procedure post and also Ava's story. I have added quite a few videos and pictures to these, some never seen on here, so go check them out =) As always I am open to comments or opinions about her blog, so leave me a comment if you have an idea or problem with the site.

and she's FIVE!!

2011-01-12T17:25:00.000-08:00

Really where did the time go? I guess she has kept me pretty busy these past five years. What she has overcome and accomplished is just amazing to me.

Today at five.

Her cakes.

Opening her gifts. She was so funny, she ripped the paper up in small pieces and put them all in a pile.

Happy Birthday Ava, my sweet baby girl!

2011-01-04T06:42:00.000-08:00

Despite everyone being sick this year, we all enjoyed Christmas. Ava had such a blast opening presents, although I think she liked the paper more. She got several baby dolls, that she just loves. She gives them hugs and kisses and pushes them around in a baby stroller. She just amazes me as the amount of affection she shows for them. There was this giant bag and I thought it would be funny to put her in it. Well she liked it so much I had a hard time getting her out of it.

Coming up is Ava's FIFTH birthday. My goodness where did the time go? Also in the next few weeks we will be having her transition meeting for her to go into Kindergarten. I'll keep you posted!

A few Christmas Pictures

2010-12-02T21:49:00.000-08:00

I had to remove the slideshow as it was slowing down the page, so here are some of her Christmas pictures.

Time for an update.

2010-11-28T20:43:00.000-08:00

It has been a month since I last posted. I have meant so many times to come and post little updates. Now I guess I'll have to do them all right now.

First I am making an email list for anyone that want's an update emailed to you. Just send me your Email address to Aya1325@yahoo.com and I will make sure you get a link to any new posts that I do. I recently switched ISP's and lost all of my contacts, so I'm still working on collecting those ones as well. You can also click on her Follow section below and follow her blog that way.

Friday Ava got her handicap placard in the mail. What a relief this is to me, and it makes me one happy momma.
Now I can get her stroller in and out with plenty of room and I don't have to worry about people parking so close to her side that I can't lift her in and out. This has happened to me so many times and I need all the room I can get to put her in the car. I have even placed her in her brothers car seat on the other side, drove to an isolated part of the parking lot, then put her in her own seat. I see this making our lives so much easier.

I am also working on getting a photo gallery on here somewhere. Still sifting through all the sites to try and find something suitable for her blog.

In the past month, Ava has started doing dishes with me. I removed the rug in front of my sink and she pushes her little stool to stand in front of the sink with me. She helps me wash them and gets lots of water on the floor for me to clean it also lol. It's so cute, I don't care how much extra work she makes for me as long as she is happy. She also started pushing the scooter by herself at therapy. This made her OT and mommy very proud! Just to see how much she is learning is so awesome! Also something on TV has caught her attention and it's..... Jeff Dunham! I was watching his Christmas special the other night, and she couldn't take her eyes off him! I guess she really likes his puppets.

We are going to take her Christmas pictures this week, so I will have them up soon. Until then, take care! <3