RAISING JOEY

CDSC’s Legislative Video

The Connecticut Down Syndrome Congress recently produced three new videos, below is the legislative one.

31 for 21, October 2nd

Almost 3 1/2 years ago when we found out prenatally that Joey was going to have Down syndrome, I never imagined in my wildest dreams that I would have made the friends that I have who also have children who have Down syndrome. It’s truely amazing how one little chromosome has brought so many of us together.

Some of us bond via Facebook or MySpace, some through Blogging and others through their local Down syndrome organization like the Connecticut Down Syndrome Congress. I have found friends in all of these including my best friend, Melissa!

I also never imagined that I would have gotten as involved with the CDSC like I have. I started out by joining the Buddy Walk Committee, from there I joined the CDSC’s Board of Directors, then from there I started The Holland Committee, which is the CDSC’s New and Expectant Parent Outreach and Support Committee.

After I got The Holland Committee up and running I signed up to take a 6 week Parent Leadership and Advocacy Class. While taking the class, I never imagined what my next step would be. Next Wednesday, October 7 is the CDSC’s Annual Membership Meeting where, myself and fellow classmate/ parent, P.S. are to be voted in by the members & to become the CDSC’s Co-Presidents and work together for the next 2 years!

It’s simply amazing how one simple chromosome can enrich and enhance one’s life in so many ways… amazing friends and amazing opportunities for the rest of my life!

2009 CDSC Buddy Walk!

Today was the Connecticut Down Syndrome Congress’s Annual Buddy Walk at Hammonasette Beach State Park. Over 1,400 people showed up and we raised over $88,000!! I’m so proud to be part of such a wonderful organization!!!

Make an on-line slideshow at www.OneTrueMedia.com

I made the newspaper!

I made the paper about the CDSC’s Buddy Walk that was held today!
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Walk raises funds, awareness of Down syndrome
Saturday, September 26, 2009

By Amanda Pinto, Register Staff

Amanda Pinto can be reached at apinto@nhregister.com or 789-5734.

Weekend of fun!

For me anyways, we decided to keep the kids home since Joey is being taken off his stomach medication, we didn’t know what kind of “surprises” we may get, along with the fact that lately, we just don’t know how Joey’s is going to behave. So I went out and volunteered my time for my favorite non-profit organization, The Connecticut Down Syndrome Congress.

Anyways, Saturday was the CDSC’s Summer Picnic and being on the board of directors, I thought it was important that I be there to help out in any way that I could. I had a great time, I ran the registration table and was able to sit under a nice shady tent all day out in the beautiful weather! I also got to put more faces with the names of CDSC families!

Holly, Sam and I at the registration tent!

And of course, I got to see two of my favorite people, Melissa and Dillon!

Sunday was the 2nd Annual Benefit Ride and Concert for Corey where all the proceeds went to the CDSC. Again, I was able to sit under a nice shady tent out in the beautiful weather and this time, listen to awesome music by The Whiskey River Band!

Me, Corey and his mommy, Cecily!

Bikers have the biggest hearts!!!

And I got to see Melissa and Dillon 2 days in a row!

The Whiskey River Band who generously donated their talent for such an awesome cause!

Friendships

After reading Melissa’s recent post about reaching out and finding friends in the DS world, I thought I would chime in and post a little about my fellow mommy friends who also have children with Down syndrome.

No one truly knows how you feel unless they’ve been in your shoes. I’ve had friends say, “oh, I know how you feel. My cousin/ neighbor/ friend of a friend has Down syndrome.” I’m grateful that they’re trying to be there for me, but unless you have your own child who has Down syndrome, autism or something similar, you really don’t know how it feels. Somedays can be VERY stressful! Most of the time, it’s a beautiful world and I wouldn’t change one single thing about Joey. Joey is who he is thanks to that beautiful extra little chromosome. But then there’s the days when you need someone.

Anyways, back to my reason for this post. The first true friend I met who also has a child with DS was Cecily. Our sons are about 6 months apart. Together we got involved with the CDSC by first joining the Buddy Walk committee when by joining the CDSC’s board.

My online friends seemed to pour in once my blog was discovered. Rebecca, CJ, and Michelle were my first friends via the world wide web soon after Joey was born. And I even had the pleasure of meeting Rebecca and Michelle at the NDSC’s convention last year in Boston. One of these days, I’m hoping to meet CJ too!

I met Maureen almost 2 years ago at the CDSC’s picnic when Penny was just a wee little thing, then a year later, I met Melissa who has become one of my dearest friends ever! The bond I have with her is unbreakable! Then there’s Tricia, who at the time also lived here in CT then unforunatly moved up to Vermont THEN down to Maryland, so we don’t get to see them nearly as much as we’d like!

I’ve made so many friends thanks to Joey, I can’t even count them all. Many of them are fellow CDSC members. Some of us are on the board together, some of us attend Parents Night Outs, and some of us just know eachother from other various events.

It’s weird, besides my friends who I share this common bond with, I don’t really have many friends. After I moved up to Ohio 4 years ago, I got pregnant within 2 months and then a few months later we recieved the prenatal diagnosis of Down syndrome so I reached out to the CDSC, so I never really had the chance to make very many friends.

Whenever I have a bad day or just need someone to talk to, I have so many other Momma’s I can talk to. It doesn’t matter what we are: straight, gay, Catholic, Jewish, we all have a similar bond that will be with us for the rest of our lives and no one can take that away from us.

Things to say and not to say

I’m working on a list of things to say and not to say to new parents of babies who have Down syndrome for The Holland Committee soooo all of you DS parents, could you please comment on this post things that people said to you when your child was first born or when you recieved your prenatal diagnosis that really upset you or things that meant the world to hear someone say.

Also, I’m collecting suggestions of things that friends/ families can do to help these new parents.

The more I collect, the more we can help new and expecting families!

Dr. Bob day

On Wednesday, I headed up to the Capitol Building in Hartford to see Joey’s genetic doctor, Dr. Bob Greenstein get honored by the House and Senate for his 40 years of service to families here in Connecticut. CT’s Govenor Rell named April 29, Dr. Bob Greenstein Day!

Dr. Bob not only is the head of genetics at UCONN Hospital, he is the medical advisor for the CDSC and is on The Holland Committee with me.

Thank you to Dr. Bob for all your hard work and dedication to families like ours and all you’ve done to make the lives of children with genetic abnormalities of all sorts a better place!

You’re the best!

The CDSC is on Facebook!

To all of my Connecticut readers who are interested & have Facebook accounts, there is now a CDSC Facebook page that is growing everyday! It’ll be updated regularly with new events and information about the CDSC!

The CDSC’s Facebook page!

This week…

It’s so weird not having a calendar full of birth to three therapy appointments for Joey. I have FOUR LESS appointments a week now that Joey is in school. It’s odd not having therapists here at the house. The house kinda feels empty now, LOL!

But now my mornings are full of getting Joey fed, dressed and out the door in time for the bus. Along with getting Joey dressed, I have to get Leah and myself ready too since we have to walk up to the bus stop and wait.

Anyways, this week I have an OB checkup to see how Baby Bean is doing and then on Thursday Joey has his yearly visit with Dr. Bob, his genetist, who we love dearly! It’s going to be a bittersweet appointment knowing that Dr. Bob is retiring in July so this will be our last appointment with him. At least I will still have contact with him since he’s on the CDSC’s board and helps me with The Holland Committee.

I forgot to update about Joey’s eye doctor appointment on Friday. Thankfully he still doesn’t need glasses but is getting close. He still has the astigmatism but we can still get away with him not having glasses. He was SO BAD during the appointment, he screamed and wouldn’t hold still. I have no clue how the doctor even got a good look in his eyes.

Well, I guess I better pack Leah up in the van and head out to run a couple errands while Joey is at school!

Operation Buddy Blanket

I just realized how long it’s been since I’ve posted an update! Sorry about that folks! I’ve seen so occupied with being pregnant, working on things for the CDSC, and cleaning the house, I haven’t thought of much else!

My newest project with the CDSC and The Holland Committee, is called Operation Buddy Blanket. I’m recruiting volunteers here in CT who know how to knit, crochet or quilt to make baby blankets for new babies here in CT who have Down syndrome. We have an average of 40 babies with DS born every year in CT so hopefully I can find enough volunteers to keep up with all the beauitful babies! If you live here in CT and want to help, email me raisingjoey[at]gmail.com.

Joey’s buddy Dillon is back home and doing very well. He has already gained 2 pounds since he had the NG tube placed last week and will be going in a couple weeks for a G tube. Keep him and his mommy in your thoughts and prayers!

2nd Annual Cans 4 Corey!

Once again, my dear friend Cecily is hosting Cans 4 Corey to help raise money for the CDSC! If you’re in Connecticut, I hope to see you there!!! Start saving your soda cans today! Here’s my post from last year!

Hey CDSC Families

For those of you that read this, today’s Holiday Party in North Haven has been canceled but will be rescheduled for a later date due to the ice storm that suppose to hit the southern part of CT including North Haven.

So much excitement!

We had one heck of a snowstorm last night! I love it just in time for Christmas! It’s looking like we’ll have a white Christmas here in Connecticut this year!

My parents are currently on their way up here to spend the holiday with us and are driving through Pennsylvania as I write this. Thankfully so far, they’ve had good weather but are driving my mom’s 4×4 truck just in case!

Tomorrow we have the CDSC’s Holiday Party and I’m so excited for that as well. A pasta dinner with music and Santa! I’ll be sure to take lots of pictures!

Also, tomorrow evening (I almost forgot to mention), my sister in law and her husband are coming in from Washington DC! I can’t wait to see them too! What an exciting upcoming week!

Great article!

A wonderful article written by a friend of mine, a fellow CDSC parent, Chris McAuliffe!
Rose’s Life Lessons: Signed and Spoken
Posted in: Top Story
By
Dec 1, 2008 - 3:39:04 PM

My wife, Cheryl, and our youngest daughter, Rose, who has Down syndrome, visited our local high school’s child development class when Rose was almost five years old. They met with over a 100 teenagers in eight different classes to talk about our family, raising a child with Down syndrome, and our experiences with sign language. The students knew they would be meeting a mom and her “disabled” daughter, but I wonder if they weren’t quite sure what to expect. Their grandparents’ generation had sent away children with this label to live in institutions. Their parents’ generation, when given the prenatal choice, has overwhelmingly chosen not to welcome a child with an extra chromosome into their own lives. The students’ generation was just beginning to gain the experience necessary to understand that who we accept into our lives is most limited by our own prejudices and not by anyone else’s abilities.

So a mom and her daughter stood at the front of the class waiting for their introductions and ready to share a few of their answers. Cheryl’s appearance and mannerisms could have reminded any of the students of their own mothers. Rose had an element of the unknown about her. With her neatly-trimmed, wispy blond hair and preschool wardrobe, she could have been a little sister or a young neighbor, but the shape of her hazel brown eyes and her smooth facial features sent an uncertain message.

“Hi, I’m Cheryl McAuliffe. I’m a mom of three girls; Erin’s a sophomore here, Katie’s in sixth grade, and this is Rose, my youngest daughter. She does have Down syndrome. She’s four years old, almost five, and she goes to school at our town’s Early Childhood Center. I’m going to talk about my family’s life with Rose and about signing today. And Rose is going to help me. Rose, do you want to sign your name for the class?”

“Rose!” Rose spoke clearly and loudly, no signs from her hands. Her speech had come on with a rush through this year in four-year-old preschool. For many months, she had been greeting folks with her voice and not with her hands.

“Can you sign your name?” Cheryl tried again.

“Rose!” came the spoken answer again, even more firm. The months of overlapping speech and sign were fast coming to an end. Speech was now definitely Rose’s primary communication choice. What was Mom thinking anyway?

“OK, thanks. Maybe we’ll try later.” Cheryl said. A brave but infrequent public speaker, she had brought along a few home videos to fill some of the class time and as an easy guarantee of plenty of Rose signing.

Cheryl started with a brief talk on her first experiences as Rose’s mom. She touched upon some of the tough issues related to Rose having Down syndrome, from the initial news of her diagnosis, to her difficult birth, to our scare as Rose struggled to recover from heart surgery, to coping with the first year of unexpected medical difficulties, g-tube feedings, learning to eat, and more. It was then, as always, a difficult and significant part of our lives. Rose has more than her share of scars, but her body has healed and grown, as we all have. As Rose grew, the stories became much less scary and more everyday—learning to walk, learning to communicate, working with our Birth-to-3 therapists, and starting school on her third birthday.

At first, Rose listened to her mom’s stories and kept close. But as she became more comfortable with her new surroundings, she moved into the audience to find an empty chair and sit among the other students. The students’ attention was drawn between following Cheryl’s uncommon stories of our everyday experiences and watching Rose’s calm, attentive classroom behavior. Rose enjoyed her freedom and continued to move through the classroom, finding another open seat next to another new friend, settling in each time to pick up her mom’s story. Once Rose noticed that this classroom, just like her pre-K class, had its own bathroom, and being an independent child with a need-to-go, she was on her way. The door banged shut behind her, and the steady noise of her progress competed with Cheryl’s presentation. There were lids banging, the toilet paper roll being played out, flushing sounds, the whoosh of water in the sink, and paper towels being pulled down until the door swung open again and an independent and content Rose quietly rejoined the class.

Cheryl moved to the main topic, sign language. Speech was an early challenge for Rose, as is not uncommon in children with Down syndrome. Our first exposure was when one-year-old Rose’s Birth-to-Three therapist introduced signing as a communication aid. The first few signs were simple, whole-hand gestures easy for a young child to form in order to express some basic needs—more, milk, mommy, and daddy. Within six months, she had mastered signs for greetings, favorite foods, and all family names, including our dog.

We worked with her, signing and parallel talking through her daily routines, adding words from our guide, ‘the big yellow book’ of Signing Exact English (SEE). Soon our enthusiasm and Rose’s aptitude quickly outpaced our Birth-to-3 therapist’s expectations. In a little more than a year, Rose had more than 60 signs that covered her extended family and friends’ names and many more signs for her daily activities. Most signs were learned through tens or hundreds of spoken and signed repetitions mixed throughout our days. One obvious exception: after seeing her sisters enjoying a cold sweet treat on a hot summer evening, Rose learned ice cream on the first take. Motivation is key.

By the time Rose was three years old and ready to start school, she brought with her more than a curiosity to learn; she brought a vocabulary of 150 learned signs and almost another 100 being learned. Her new school was more than ready to bridge her nonverbal gap. Rose’s classroom teacher and speech therapist both signed SEE, the preferred sign system in classrooms where people are combining sign with the spoken words and grammar of English. Over the next year, as Rose made new friends and worked on speech, occupational, and physical therapy, her signing vocabulary peaked at over 350 signs.

Then speech happened, seemingly overnight, but really the result of her development and her team’s hard work. The major pieces fell into place, and Rose made the shift from manual to verbal expression. After a few months of overlapping speech and sign, she was well on her way. We had waited so long to hear Rose speak, and now we had the pleasure of her spoken words in abundance. Her expressive vocabulary, for years limited by the pace of the signs introduced by her family or teachers, was now hers for the taking. She jumped at the opportunity, and more opportunities opened up for her. Speech is a wonderful, universal means of communication.

Cheryl popped a video in to show the class Rose at her signing peak. First up was three-year-old Rose sitting on our living room couch, a little uneasy that she was being asked to sign to a camera. Still, she ran through a list of beginner signs: eat, drink, bed, more, finish, all done (her made up sign), cracker, bottle, mother, daddy, music, block, boat, ball, cat, and dog. Cheryl followed with another short video of Rose in a more natural setting with me, Dad, playing, talking, and signing back and forth on a walk to the park. Cheryl narrated for the class, interrupting Rose’s signs as the video showed her playing hide-and-seek, climbing on the playscape, and exploring on a spring day. This was just a glimpse of Rose and her abilities but the message was clear to the students. This wasn’t about what Rose couldn’t do; this was about what she could do. From the students’ perspectives, here was this active, attractive little girl, wearing a label that carried mysterious fears, and yet she had mastered a language that was beyond them. She wasn’t disabled, she was differently-abled. In some areas, she was very abled. In fact, Rose was a very cool kid.

After the videos, Rose helped Cheryl distribute a handout to the class—15 starter signs. Cheryl ran the class through their first signing practice, modeling the signs for them with the students grouped at tables. Rose recognized the familiar roles of the teacher and students from her own classroom experiences. Then, as always, she was more than eager to play the teacher. Cheryl had brought along a few of Rose’s early board books to share with the class. Rose picked up one, Word Signs – A First Book of Sign Language, and stepped to the front of the nearest table. She opened the book, holding it in the classic teacher-to-class position so the students could see and pointed to the first sign.

“OK, socks. Like this.” Rose said and then signed socks for the group. “Now your turn.”

The students answered with their signs, following Rose’s model.

“OK. Good.” Rose said and pointed to the next page. “Now crayons.” She signed crayons. “Your turn.” The students answered again with their signs.

“Good.” Rose said. She turned the page and continued to methodically and patiently work her way through the entire book, page by page, sign by sign. It was clear who was teaching and who was learning.

Rose has had an immeasurable positive impact on so many lives. If I had known four-year-old Rose when we first learned of her diagnosis of Down syndrome, I would have been immensely relieved. In my ignorance fed by outdated stories, I imagined all the worst possibilities. My own understanding was delayed until I could witness Rose begin to grow into her own person.

Now Cheryl and Rose were able to bring that advance comfort and understanding to more than 100 students, to be stored away for sometime when they or someone they love learns they are going to have a child with Down syndrome or some other disability. Rose amazed them like she amazes all people, just by being herself. Unspoken were the misconceptions and ill-informed prejudices and fears that were quietly put aside to be replaced with a healthy, life-affirming image. Their witness to her composure, her model student behavior and teaching contributions, her beauty and cuteness, her humor and precocious manner left them with a lasting positive impression. But the students themselves can tell you their feelings much better than I. Here are some notes from the considerable stack of thank-you letters Cheryl and Rose received:

“You really taught me a lot about sign language, and I thought it was really cool. Rose is a very smart and adorable little girl… it amazed me the way Rose responded and knew the different signs at such a young age. I find it very important for children to experience new thing,s and Rose showed me that she does that very well.”

“I think it was a great idea that your family taught Rose sign language because even though she has Down syndrome it puts her ahead of everyone.”

“I learned a lot about Down syndrome children. I didn’t realize that they could live such normal lives. Your daughter is very cute and smart.”

“I just want to say that I enjoyed you very much, and I learned a lot from Rose. Hey, Rose, keep teaching because you are doing an excellent job!”

We celebrate that we live in a time and place where public high school students can meet a little girl like Rose. The tide is turning for the better. Still, the reality is that in today’s world children that carry a label like hers are routinely denied the opportunities of realizing their life’s full potential, and for that, we all suffer. What is possible is that children like Rose can and do succeed in school and in life. What is missing is this example widely shared in most people’s lives. Too few of us have experienced first hand the differences that are found living outside the narrow, accepted norm. What can be done is limited to whatever has been done, and any other possibility is met with a fear of the unknown that can be devastating and overwhelming. What is the starkest measure of this? More than nine out of ten expectant parents given a prenatal diagnosis of Down syndrome decide to not have the child. A child’s life perceived to be too different is too painful to be considered possible, and that fear of the unknown drives a vital yet uninformed decision. Most parents-to-be, with no personal experience to guide and assure them, will choose not to have a “different” child rather than risk having a child who won’t belong in the lives they imagine for themselves. The need to belong is powerful, and the fear brought on by ignorance is so far from the truth. All the more reason we actively seek and embrace the differences in all our lives and in our communities. Differences are not a barrier. Differences are the path to a full life. The student you welcome into your classroom today, the co-worker you learn from, the neighbor you share with, the friend you grow up, the child you love into your life are all part of that path. I am hoping that the seed of new ideas and possibilities has been planted in a hundred young minds and hearts. Their newfound wisdom gives me hope that tomorrow is going to be so much better than today.

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Chris McAuliffe’s paying job is as an engineer, and his passion is to advocate for equity in education. He lives in Connecticut with his wife Cheryl and three daughters, Erin, Katie, and Rose. He’s learned from his family that the intangible lessons of a community living together are more powerful than the obvious goals of academics. His focus is on the changes necessary to provide effective education to ALL students.

© Copyright 2008 by EP Global Communications

My speech

I just got home from meeting with Dr. Skotko and attending Grand Rounds with the OB’s and Pediatricans. Unfortunatly, Dr. Skotko went to the hospital we were showing the video feed of the Grand Rounds at by accident, so we had to beam his talk into the hospital we were at instead but thankfully it all worked out. I just wish I could have met him in person! Anyways, below is my speech from this morning…
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Hello, my name is Jessica Heeran. I am a stay at home mother to two beautiful children, Joey who is 2 ½ years old and Leah who is 14 months old. I am on the Board of Directors for the Connecticut Down Syndrome Congress and the chairman for The Holland Committee.

I want to thank all of you for listening. Together we can make the lives of new and expecting parents easier and less stressful. It shouldn’t be a time full of grief but a time of joy during their pregnancy or birth of their new child and knowing that they are NOT alone and providing them with new and accurate information about Down syndrome.

Preparing…

Tomorrow morning I have to get up bright and early at 5:30, be out of the door by 6:00 to head up to Hartford to attend Grand Rounds with OB’s and pediatric residents with Dr. Brian Skotko, Dr. Greenstein and a couple other parents involved with the CSDC.

I will be giving a speech about my experience recieiving a prenatal diagnosis of Down syndrome and how I have started The Holland Committee. I think I finally have my speech the way I want it and now I just need to practice it until I can do it with barely looking at my papers!

I’m so nervous! It’s one thing to speak in front of other parents but it’s another to speak in a room full of doctors!!! YIKES! Wish me luck!

Update

11 days until Joey’s surgery. I really just want to get it done and over with. I wish I could wave a magic wand and turn today into the 17th. I know I shouldn’t make myself so nervous about it but this is major surgery! Poor little guy has no clue what is about to happen to him…

I’ve been trying to keep myself busy doing things around the house, working on The Holland Committee, and scheduling Usborne Homeshows. I have one scheduled for next Monday! YAY!

In other news, since we’ve started Joey on pediasure, he’s gained almost 1 pound! And thankfully his doctor just wrote us a prescription out for it and hopefully his insurance will accept it! That would be a huge help money wise for us. That stuff isn’t cheap!

On the Leah front, she’s teething again. We’re up to 5 teeth!

31 for 21, October 26th

The CDSC’s convention was a success! The new/ expectant parent workshop I did went very, very well. The room was packed! It was great to talk to all the new parents so we all could share our experiences.

I spent a large part of the day with Melissa, Dillon’s mom. She helped me with the two tables I was running. I would have been so lost without all of my helpers!!!

The keynote speaker was Karen Gaffney. She is a huge inspiration! I actually had the pleasure of having dinner with her Friday night! A couple of us CDSC board members joined her for dinner.

31 for 21, October 25th

Well I’m off to the CDSC’s convention for the day!

31 for 21, October 24th

Thanks everyone! From what I understood yesterday from the doctor is that its not an emergency surgery. We go next week for a consultation and will schedule then. He does not currently have a blockage from the malrotation (which is good).

And the other good thing is that the doc thinks that this procudure will be done by scoping him rather than cutting him clear open (Lord, I hope so!)

The surgion’s office called yesterday to set up the consultation appointment for his surgery so next Thursday we’ll meet with this doc to talk about surgery and set a date.

In other news, I talked to 2 new DS families yesterday and left a message for one expectant mom! YAY! The Holland Committee is off and running!!! I know for sure that one of the mothers will be attending my new/ expectant parent workshop on Saturday at the CDSC’s convention!

This weekend, busy, busy, busy!!!

It all started Monday morning checking my emails from the CDSC Board of Directors, finding out that one of the speakers for this weekend’s annual convention, this Saturday, canceled leaving 2 sessions without a speaker. Since I’m the chair for The Holland Committee, I decided to step up and offer to do a new/ expectant parent workshop.

When I was pregnant with Joey, I attended a new parent workshop, and it was wonderful to be with people who knew exactly how I felt at that exact moment. Unfortunatly, it was the last year that the workshop was offered.

So, I’ve been brainstorming different things to do for this workshop. It will of course, be a roundtable session where we’re all facing eachother. I have a booklet written by Kathyrn Lynard Soper, “What Parents Wish They’d Known” that she gave me permission to make copies of, along with a packet of poems to give to the attendees.

Along with the workshop, I’m running The Holland Committee’s Table, and the Buddy Walk Merchandise table. Is there anyway to saw my body into three sections so I can do everything??? I have 3 people who have offered to help me, but only for a while. I just hope I’ve not taken on more than I can handle…

31 for 21, October 5th

Today is a semi-bitter sweet/ happy anniversary for me. It was three years ago today that we found out Joey was going to have Down syndrome. Don’t get me wrong, I love Joey just the way he is and I wouldn’t change one thing about him, including the fact that he has Down syndrome, but every parent who has a child with Down syndrome can vouch for me. It was a day full of very raw emotions. Today is the day my plane landed in Holland.

Fear, anger, and just plain feeling alone were all things I felt that day. Even though I had my husband and our family & friends, it was still like I was all alone. I was angry but didn’t know who I was angry at. Heck, part of me was even angry at God.

Even though I was angry at God, I still loved him. Having my faith in the Lord was one of the things that got me through the rest of my pregnancy.

I was pregnant with our first child, not knowing what to expect. Knowing that there was nothing I could do to change the fact that he was going to have Down syndrome. My doctors kept mentioning terminating my pregnancy. It was something I just couldn’t do, I couldn’t abort my baby just because he had Down syndrome. I was promised information and help from the medical community, but I never recieved it.

I look back on that time and realize how it’s made me the person I am today. It’s helped me become a better mother, a better Catholic, a better advocate, and a better wife.

Because of recieving the prenatal diagnosis and having such a bad experience with the medical community, I vowed to help others who have recieved prenatal diagnosis’s of Down syndrome. I know I can’t help each and every family who recieves a prenatal diagnosis, but I will be there for any who come to me.

That is why I have become so involved with the Connecticut Down Syndrome Congress. I have joined the board of directors, I’m on the Buddy Walk committee, I arrange a monthly playgroup and a Parent’s Night Out dinner, and I’m also in the process of forming a prenatal diagnosis outreach committee, which I have proudly named, The Holland Committee.

We are reaching out to the medical community here in Connecticut to help educate them on proper ways of giving prenatal diagnosis of Down syndrome to these families, and also being available to any family who wants someone to talk to. We have so many other things planned for the Holland Committee.

A few months back, I actually recieved a call from a mother who had recieved a prenatal diagnosis and had an abortion scheduled the next day. She talked and I listened and answered all of her questions to the best of my ability. That had to be one of the hardest phone calls of my life.

I never heard back from her, it haunted me. I thought for sure that she went through with the abortion. I was sick to my stomach for weeks after that.

A couple weeks ago, I recieved wonderful news…. she canceled! Finding that out has already made all my hard work with the Holland Committee worth each and every minute I put into it.

Happy Holland Day Joey! I love you!

~My story about recieving the prenatal diagnosis.
~Welcome to Holland, by Emily Perl Kingsley

~~~Also, don’t forget about my 31 for 21 giveaway! I’m giving away one of my DS awareness bracelets! Click here to enter!

Buddy Walk 2008!

Photo and video editing at www.OneTrueMedia.com

Buddy Walk here we come!

I just realized that I’ve not posted anything all week! Anyways, my mom is in town from Ohio for our Buddy Walk and I’m getting ready to leave early since I’m on the BW committee. Our team is in charge of the merchandise booth this year. It’s suppose to rain but we’re not going to let a little rain dampen our spirts today!

I’ll be sure to take lots of pictures!!

GO TEAM JOEY HEERAN!!!