Happy Halloween!

After 28 Years.............

The Philadelphia Phillies are the 2008 World Champs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Karlie and Rylie's 3rd Halloween

I can't find one picture of Rylie's 3rd Halloween. She was Snow White, and she wouldn't keep her wig on. Maybe I was too busy trying to put the wig back on and didn't have time to take a picture.

So, here's Karlie on her 3rd Halloween! Isn't she so pretty!

Why is it snowing today????

I just looked out my windows and it's snowing! I don't remember ever seeing snow in October! Maybe Hell is getting ready to freeze over since the Phillies are about to win the World Series.

You'll have to click on the picture to see the snow better.

Do these two pictures look like the same baby?

Karlie and Rylie's 2nd Halloween

Karlie (1999)

Rylie (2004)

Karlie, Rylie and Cesalie's first Halloween.

Here's a picture of Karlie on her first Halloween.(1998)



Here's Rylie, in the same costume for her first Halloween.(2003)


And here's Cesalie, last year on her first Halloween.(2007). Wonder why she didn't get the mouse costume? I can't imagine why I got rid of it...hmmm.

Karlie's so lucky!

Go check out Karlie's blog to see what she won. She is so lucky!

RYLIE is one year old today~~

The blog, not the girl....lol!

Can't believe I've been blogging for a year!

Looking for suggestions.

I'm thinking about all of the people in Rylie's life that I need to get Christmas gifts for. She has her teacher, special ed teacher, Physical therapist, Occupational therapist, speech therapist, one on one aide, aide in special ed, bus driver and the aide on the bus. Every single one of these people are a very important part of her day. They each deserve a special gift, but special gifts can really add up! So I'm looking for suggestions. What do you usually buy for your child's teachers, aides and therapists?

Down Syndrome belongs

IN honor of Ds awareness, please click here to read an old post I wrote.

I must be naive,I thought people only aborted their "Ds babies"" because they were scared or didn't have all the facts. I have recently been directed to a few blogs that are actually, trying to do the opposite of what I do. They are trying to END Down syndrome. Yep, that's right, I said "End Down syndrome". Apparently, people think that it's immoral to bring a child w/ Ds into the world. They think people only do it for religious reasons, or they do it to be some sort of martyr, who wants to suffer and get attention and sympathy by raising a child with Down syndrome. The people writing these blogs, think "our" only goal in life is to be happy, and having a child w/Ds would certainly thwart any happiness you could of had, so you must abort. I'm sorry, I won't provide a link to these blogs!

I believe people decide NOT to abort their babies with Ds because:

1. Uh, how about because it's their baby and it doesn't matter. They will love their child no matter what.

2. Abortion is murder. There I said it. I don't see what religion has to do with it. You don't have to be a follower of Christ in order to not commit murder.

Also, now I will be religious. If you had an abortion, God will forgive you and take away the guilt. But when I hear stories about people who had an abortion because of Down syndrome, these people always seem to think it's ok, and God helped them to make this decision, and it's just not true. God creates children with Down syndrome, because they belong. They are his creation and nobody has the right to get rid of them.

Special Exposure Wednesday-Fall 2005

Here's a fun picture of Karlie and Rylie from the fall of 2005


Click here for more Special Exposure Wednesday

Q& A 31 for 21

What are some of her favorite things to do?

One of Rylie's most favorite things to do is go to or have a birthday party! She started talking around three years old, but she's known and sung all of the words to "Happy Birthday" since as long as I can remember.LOL!

She loves clothes and shoes! She could spend hours in her room dressing up and changing her shoes!

She also likes to eat! She's always been pretty good at trying any new foods. She likes to watch me cook and always wants to help. I think cooking will be a talent of hers when she get older.

Q & A 31 for 21

Did she have any medical issues?

At birth they thought she had Hirchsprungs Disease. This is the reason she was transported by ambulance to the Childrens Hospital. After a biopsy, it turned out she didn't have hirchsprungs , she had anal stenosis. The anal stenosis was fixed without surgery.

She was seen by a cardiologist the first six months of her life. She had an opening that closed on it's own. Thank God, she never had any heart issues.

She was diagnosed with Optic Nerve Hypoplasmia at a few days old. This is where a vein that connects from her brain to her eye stopped growing in utero. Long story, for another post, but this has never effected Rylie's vision.

She was also born with syndactyly(webbed toes) on both feet.

She also had jaundice and sleep apnea when she was a newborn.

Currently Rylie has ear tubes. And she takes Prevacid for reflux.

.

My favorite new blog

Check out my favorite new blog. I love this blogger! She's the absolute best! Go check her out and tell her HI!

Q&A 31 for 21

What are some of Rylie's strengths?

Independence, that is her biggest strength. She likes to do things herself, whether it be getting dress, getting herself a snack or drink, buckling her booster seat, etc.... This is very encouraging to me, because it helps me believe she will be able to be an independent adult.

Another thing that I think will take her far in life is her friendly personality. She is very sociable. She says hello to everyone she sees!

Questions and Answers -31 for 21 - Karlie, the big sister.

What is your older daughters understanding of and feeling about Down syndrome?

I was really scared for Karlie when Rylie was born. I felt like our little family of three was now ruined and Karlie was going to be greatly effected. If you are getting ready to have your second baby, then you know how much you look forward to your child meeting the new baby. You look forward to seeing the expression on their face the first time they lay eyes on the new baby. You look forward to watching them bond. I was so excited for Karlie to meet the new baby. She had gifts ready to give the baby. I couldn't wait to see Karlie be a big sister. When Rylie was born she went to the NICU and then she was transferred to a NICU at another hospital. Karlie was not allowed in the NICU and she could only see her new baby sister through the glass window in the first hospital and in the second hospital there was no window at all. My heart broke so badly, since she couldn't see her. I had waited for that moment for nine months. I kept begging the nurses, to let Karlie in the NICU, but they kept telling me rules are rules. It was RSV season, and that was the reason that no children under twelve years old were allowed in. There was one nurse in the NICU that felt my pain, so one day she took Rylie to the front office(all attached to her IV pole and a million other wires). Karlie was able to see her through the office window. Then the nurse did something that I will be forever grateful for. She opened the window and let Karlie hold Rylie's hand for a few seconds. My heart melted. She finally had contact with her baby sister! Rylie came home from the NICU 14 days after she was born. On the way home we stopped at Karlie's preschool and took her out of class early. Rylie was in the car(with Vince) waiting for her! Karlie was so surprised and excited and the bonding began instantly!

Since Karlie was only four years old at the time, I didn't know how much she would understand about Down syndrome. I didn't want to scare her, and for the most part Rylie was healthy, so I never really said much. She thought it was normal for babies to have a lot of doctor visits and to have teachers(therapist) come to the house every week. As she got older, I would show her the book BABIES WITH DOWN SYNDROME. We would look at the pictures of the different kids and discuss Down syndrome. I just answered all of her questions honestly, and for the most part Rylie having Down syndrome didn't phase Karlie. That's the neat thing about siblings. They are not usually traumatized like us adults are. Karlie didn't ever grieve or cry about Rylie having Ds. Rylie was just her baby sister.

Now that Karlie is older, she understands exactly what Down syndrome means for Rylie. And to tell you the truth, she has told me a few times that she wished Rylie didn't have Ds. And mostly it's because of Rylie's behavior. Like I mentioned yesterday, she annoys Karlie! LOL! She has also told me that Rylie having Ds is no big deal. Like me, she has different feelings at different times. I never tell Karlie that Rylie is special or a gift from God, because I believe all three of my girls are special and a gift from God. Karlie and me had a great conversation once, about God and Down syndrome. You can read it here.

Karlie sees Rylie the same way that her dad and I do. We love her. Were proud of her. We want to help her anyway we can, and try not to ever place limits on her. Karlie has friends over our house all the time, and nobody has ever questioned Karlie about Rylie. Karlie is so excited about Rylie going to her school this year. She tells everyone, "that's my little sister"! She loves Rylie. I know she will always be there for her. I hope nobody ever says anything hurtful to Karlie, about her little sister, but if they do, Karlie will set them straight. She is very protective of Rylie.

Another Question 31 for 21

What is Rylie's relationship like with her sisters?

Like any sibling relationship it's a love/hate thing. Karlie likes to play dress-up, school and red light/green light with Rylie. Other then those three things, they always end up fighting when they play. Rylie gets real whiney and annoys Karlie. Cesalie loves to follow Rylie around the house! I always say those two are partners in crime and always up to something!

Karlie is always very proud of Rylie and she is so excited that they attend the same school now. Karlie usually checks up on Rylie each day at school.

Cesalie just learned how to say Rylie's name and calls her name all day. She has really been missing her since school started.

For my next post I'll share more of Karlie's feelings about Rylie having Down syndrome. Here is a post she wrote last year.

Wordless Wednesday-Field Hockey

More Wordless Wednesday

Next Question 31 for 21

in what way(s) is your life with a child with Down syndrome different than you thought it would be when you first received her diagnosis?

Well, when I first got Rylie's diagnosis I thought, "that's it my life will never be the same." I thought I'd be crying the rest of my life. I thought our family would be ruined. I even thought my 4 year old (at the time), Karlie, was going to be mad at me. I had so many irrational concerns for Rylie's future. I wasted so much time during her first year of life, fretting and worrying about the future, instead of just enjoying the moment with her. I still feel guilty about this.

My life is so much different then what I assumed it would be , raising a child with a disability. 99% of the time it's really no big deal. I've shared in many past post how Rylie's life is pretty much the same as any kid.

Any real problem I've had in the past 5 years, had nothing to do with Rylie. When she was first diagnosed, I thought I would probably spend the rest of my life crying and wishing I could go back to my old life before Rylie was born. Now I've spent so much of the last five years laughing at so many of the funny things Rylie does, and I could never even imagine life without her.

Question & Answer Post 31 for 21

I'm going to answer each question I received in a separate post. This way I can stick to posting everyday. I know I missed a few so far, but there were some days where I had two post in one day, so I guess I'm doing alright. Anyway, on to the first question:

What has been your greatest joy in raising Rylie?

I get so much joy every time Rylie reaches a milestone. I sometimes get this nagging thought in the very back of my head that tells me- -Maybe Rylie won't ever "FILL IN THE BLANK." And every time she puts that nagging thought to rest, by showing me and everyone else that she can "FILL IN THE BLANK."

Since Cesalie was born 15 months ago I've watched her breeze through all of her milestones. When she reaches one, I always get excited and cheer her on, but with Rylie it's so different. Because she really does have to work hard! And when she succeeds, I really feel JOY in my heart.

So, I guess in a nutshell my greatest joy has been watching her work hard and succeed.

Rylie proved herself

During Rylie's first two IEP meetings, I wasn't pushing for full inclusion. Honestly, a part of me felt that she was going to need special ed in order to learn. I knew studies showed kids benefit from inclusion, so I definitely wanted her to have inclusion, I just didn't push for full inclusion. I didn't have to fight or push or struggle to get Rylie fully included. Rylie went to school and showed them for herself that she should be fully included.I know different needs will come up in the future. Maybe things will change for first grade, second grade..etc. But, now for kindergarten and for Rylie full inclusion is what's best. I'm relieved. I never felt right after the first two IEP's.

FIREPROOF

Last night we saw the movie FIREPROOF. It was excellent. If your married, Go see it! If you plan on getting married some day, Go see it! Click here to watch the trailer.

Random Questions

Fall 08, #3: Blogging

1. Why did you start to blog (either your own or reading others...like mine!)?

2. How many hits do you get in a day, if you have a blog and a SiteMeter or something like that?

3. If you lost your ability to read blogs or post on you blog today, what would you miss most?

4. What is something you've learned from another blog that you'll always remember?

My answers:

1. I started reading the blogs of other parents who have kids with Down syndrome, so I too wanted to start a blog to share Rylie's day to day life and raise awareness for Down syndrome. I've been wanting to do a separate family blog, and leave RYLIE up just for Ds awareness. Sometimes I feel bad that I don't have a blog called KARLIE or CESALIE.

2.I get about 20-40 hits per day. I wish everyone would leave a comment!

3.I'm not sure what specifically I would miss. I know when I was on vacation and couldn't get Internet access, I was definitely missing the blogs!

4.Hmmmm....Well one thing I learned is when I read all the birth stories from mom's who got the Ds diagnosis after birth, their stories are so similar to mine. It's amazing!

Look How Big Cesalie's Getting

Here is Cesalie this time last year. She was around 4 months old.



Here she is now at almost 16 months.

A giveaway!

No, sorry, not me!

Renee is having a great giveaway over at her blog to celebrate her one year blogoversary! Go visit for a chance to win a beautiful gift basket, and read up on Those Special K's while your there!

Special Exposure Wednesday

Check out Rylie's climbing skills!







Click here for more SEW

Ability Tuesday

On the first Tuesday of each month, Debbie over at Three Weddings encourages us to NOT focus on our child's disability, but to share an ability that our child has. Today I'm happy to share that Rylie is doing great with letter recognition.

I can't believe how much progress Rylie is making, learning her ABC's. The other night I wrote Rylie's name down on a piece of paper and asked her what it said. She pointed to her name and said out loud each letter,"R-Y-L-I- E". Then said, "Rylie!"

IEP Take Three!

WE had Rylie's new(revisited) IEP meeting this morning. It went great and only lasted about fifteen minutes. Her regular teacher and special ed teacher are awesome!!! Both agreed and stated that Rylie needs to be in the regular classroom all the time! The regular ed teacher said she's doing great, and said she is so amazed how independent Rylie is. So, now she will be fully included EXCEPT for two 30 minute
sessions in the resource room per week. I'm thrilled! This was our third IEP meeting for Rylie since April. The first two meetings were with people who had never met Rylie. And, I wasn't pushing for full inclusion because I just didn't know at the time what would be best for Rylie. After her actually being in kindergarten and meeting the people who work with her everyday, we were able to really do what is best for Rylie. Maybe , that's how it should be. Send your child to school, see how they do, and then do an official IEP.

Some Really Cool People Who Happen To Have Down Syndrome

Click on the links below and visit some adults who inspire me and help give me hope for Rylie's future.
Karen Gaffney
Dan Drinker
Sarah from Class of 2008
Jessica Green
Michael Jurogue Johnson

Anymore Questions?

So far I have received some great questions for my Q and A post. I'll probably do this post mid October, so you still have time to ask me anything you want to know about Down syndrome, Rylie, myself, or the rest of my family. Also if you have any questions for Vince, he would be happy to answer also! So, ask away! E-mail me at vvolz3atverizondotnet or leave a comment. Thanks!

31 for 21

Let me be honest. 31 for 21

In yesterday's post I wrote that Down syndrome has not limited Rylie in anyway. That statement wasn't completely honest. Let's be real, of course Down syndrome has put some limits on Rylie. BUT, not in the way I originally thought it would when I first recieved Rylie's diagnosis. I just didn't see her being able to do the fun things kids do, but she does. She really does!

Down syndrome for Rylie has limited her with her speech. Although she does well with her speech, It is sometimes hard to reason with her. It's not always clear how much she understands. And although, I understand her when she speaks, I find people are often asking me, "what did she say?" Also, her pre reading skills and her numbers are not coming easy for her, as they did with Karlie. It is a constant struggle, getting her to remember her letters and count to 14, BUT she does it!

Those early days, when she was just a baby, I had so many fears. I was afraid for her future. BUT now, not so much. She will graduate high school, she will go to college, she will get married. She will! If she wants to, anyway.

I will do my best to never place limits on her, even if that extra chromosome tries to.

She can do it all! 31 for 21

I remember the first summer after Rylie was born, we went down the shore for a family vacation with Vince's family. Karlie and all of our nieces and nephews were running around, swimming in the pool, playing in the arcade and going on tons of amusement rides. Rylie was only about 6 months old and the diagnosis of Down syndrome was still so new, and it stung every time I looked at the kids having fun. Yes, even watching my own daughter, Karlie running around having fun, hurt me, only because I assumed I would never get to see Rylie doing all the fun things that kids do. I remember being on that vacation, and constantly holding back tears. I remember the family asking me, what's wrong, and I would say, "nothing". I remember the pain I felt in my heart. Only 6 months into a Ds diagnosis for my baby, I'll always remember that vacation, and how I really knew nothing about what Rylie having Ds meant.

By the next summer vacation, Rylie was around eighteen months old. She was swimming in the pool, and already started riding the amusement rides. She was just starting to walk and she had the funniest personality.(Still Does).

Rylie having Down syndrome has not limited her in anyway.

She loves to swim


She loves amusement rides


She even rock climbs

She plays games in the arcade

She has no problem keeping up with those wonderful nieces and nephews of mine







Although, the feelings I had in the beginning are normal, I do wish I would have known how Rylie would thrive. I have so many more things to look forward to with her.