End the R-word

Posted by on Mar 3, 2012 in Our Stories, Uncategorized | 2 comments

We created this video in support of the Spread the Word to End the Word campaign, an on-going initiative from Special Olympics and Best Buddies to eradicate the derogatory use of the word “retard(ed)” from everyday use and promote the inclusion and acceptance of people with intellectual and developmental disabilities.

Five siblings of individuals with Down syndrome in Idaho’s Treasure Valley volunteered to help us spread the word that their brother or sister with Down syndrome is not defined by their disability.

A big thanks to all those who helped us create this video by starring in it: Therese and Liam Murphy; Gabriela and Mikaela Olmos; Tess and Isabelle Scott; Tegan and Madison Maestretti; and Austin Schaffer and Aaden Vranish. And a HUGE thank you to Sara Cox for producing the video, and our amazing videographer who volunteered his time to create this for us, Zach Johnson.

Help us spread a message of acceptance and speak out against the r-word!

2011 TVDSA Buddy Walk – Our Very Own PSA

Posted by on Sep 13, 2011 in Outreach & Awareness | 0 comments

The Buddy Walk is a great opportunity each October for those of us who love someone with Down syndrome to share our feelings with everyone we know! Yes, the walk is the biggest fundraiser of the year for TVDSA, but it’s also a vehicle for creating community awareness. And, if you have ever been to the Buddy Walk before, you know it’s a CELEBRATION! The atmosphere is fun, energetic, and joyous, and that’s because we’re so excited to tell the community what these individuals with Down syndrome mean to us. It’s a celebration of them!

This year, we were lucky enough to create our own Public Service Announcement for the Buddy Walk with local kids and teens. Five siblings of individuals with Down syndrome volunteered to help us spread the word that their brother or sister with Down syndrome is not defined by their disablility. And what’s even more exciting is this video is a prelude to a longer video where each of these young people will help us spread a message of acceptance and speak out against the r-word. Watch for that in the coming weeks!

A big thanks to all those who helped us create this video by starring it in: Therese and Liam Murphy; Gabriela and Mikaela Olmos; Randy, Tess and Isabelle Scott; Tegan and Madison Maestretti, and Austin Schaffer and Aaden Vranish. And a big thanks to our amazing videographer who volunteered his time to create this for us, Zach Johnson.

It’s not too late to register for the Buddy Walk! We hope you’ll join us in our celebration this year on October 8th.

Sara Mitton Cox
2011 Buddy Walk Co-chair

Our Stories – Aaden Vranish

Posted by on Jul 31, 2011 in Our Stories | 0 comments

On December 17, 2008 a little angel sent by God was delivered into our arms. He weighed 4lbs 13oz and was 16 inches long. We went through a lot of trials and tribulations to get him here. But it was all worth it.

After 4 miscarriages I was pregnant again and VERY scared this would be number 5. I spent a lot of time on my knees praying this little baby would stick. My anxiety was so high I would shake and sweat in the waiting room before seeing my doctor. I worried there wouldn’t be a heartbeat. It was very nerve breaking. I had a hard time sleeping and functioning throughout the day until a very good friend, Michelle suggested I go to my bishop for a blessing. It was the best thing I could have ever done. I remember him telling me, along with a lot of other encouraging words: “He felt really good about this one.” My anxiety went away and I was at peace for the first time in months.

But, my trials did not end there. Back in July 2008 Marco and I received some scary news. We had a triple blood screen due to my advanced maternal age. The blood screening revealed a 1 in 5 chance of Down syndrome and a 1 in 7 chance of Trisomy 18 (fatal). I asked the genetic counselor if she had ever seen results like mine and the baby was born fine. She responded very quietly with a sympathetic “No”.

Talk about scary!!!!  I knew I could handle Downs but Trisomy 18. I just didn’t think I could be strong enough!!!! I could not stop crying. All I could think about was hugging the children I already have and holding them tight. As I was driving home, bawling of course, I was praying for a miracle. Just then I looked at the license plate in front of me. Lo and behold it said “miracle”. Wow, I think that was a sign.

I learned as much as I could about Trisomy 18. I came to the conclusion that I would do my best. Whether the baby lived only an hour to a full year I will love it forever!!! I could never terminate the pregnancy. I knew it would be hard but I have a great support system. I already loved the little guy!!! You see, 2 days after the scary news, I felt him move for the first time. From that time forth, whenever I would get nervous I would talk to him and he would give me an encouraging tap in my uterus. It was like he was saying, “Hello, everything is fine!!”  I prayed a lot and knew in my heart he would be born with Down syndrome and healthy.

On December 16, 2008 I went to my doctor’s appointment with Ashley and found out my umbilical cord was not working properly. I was to go straight to the hospital for delivery. Wow, I wasn’t expecting that at all. Marco was in Vegas for business and wasn’t scheduled to come home for days. He did, however; catch the last flight of the evening. Good thing because the following day they closed the Vegas airport due to snow. What are the chances of that happening?!

The following day they started me on pitocin and three and half hours later Aaden was born. His big sis Ashley got to cut the umbilical cord. It was very special to have my husband and daughter present for this special delivery. By the way, this is a very good form of birth control for teenage girls to witness a live birth! She only passed out once.

Aaden ended up going to the NICU a short while after birth. My mother and I felt a very strong feeling that he should have a blessing as soon as possible. Marco escorted the Bishop and another member of the priesthood to the NICU for the blessing. It was a good thing they did because the doctors were convinced he had a lesion in his heart. They did several tests and called in experts to evaluate him. They said it was a true BLESSING he did NOT have this heart defect. The next day they ran a test that showed his blood was thick like ketchup and they were going to have to do surgery to thin it out. My doctor wanted to repeat the test first and found out that was NOT the case. His blood was just fine! Again his doctor stated it was a true BLESSING he did not have this disorder. The only other obstacles were due to being premature not Downs. He was in the NICU for 17 days.

Aaden has overcome lots of odds!!! At two days of age he would creep up the bed and the nurses had to keep moving him down. He also held his head up high. You see Down’s babies are supposed to have low muscle tone. This is not the case with him. He has repeatedly surprised everyone. So far, he has rolled over from belly to back at 6 weeks of age. Shortly after that he rolled from back to belly.

His brothers and sisters are VERY close to him. He is definitely meant to be in this family. We have been waiting a long time for this special spirit. He has healed many hearts and will continue to touch people’s lives. We couldn’t be happier. He makes every day better! We would NEVER change a thing! When you meet him you will understand!! We look forward to this amazing journey that lies ahead.

Words by Trish Vranish
Photo by Jen Schow

Our Stories – Baylee Auger

Posted by on May 30, 2011 in Our Stories, Uncategorized | 0 comments

Baylee is a blessing.  She can fill a room with happiness and smiles.  She continually supersedes expectations, both in academics and in extracurricular activities.  Yes, there are frustrations at times, but what parent doesn’t have any frustrations with their kids?  It does bother me occasionally, when people still jump to conclusions about what to expect or even want from her, as I know she can do so much more.  But their subconscious labeling of what they think individuals with Down syndrome (or any other disability for that matter) can do stops them from expecting more.  I have full expectations that Baylee will be a valued participant in society.  What that means, time will only tell – but already, she has touched so many lives.

Yes, your child will always be “different”, but all kids are different in some way.  Your love starts way before you learn about the diagnosis.  So don’t let the diagnosis change how you feel or change the limits of your child’s future.  Let them play football, be on the debate team, learn a foreign language, and be an Olympian (special or regular, it doesn’t matter).  Protect them by letting them be kids just like everyone else.  Expect more from them, because they deserve to be loved and supported as if they didn’t have that extra chromosome #21.  It’s scary (expect to feel that way at least daily), but their excitement with their achievements will be well worth it!

by Celena Auger