My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Friday, October 31, 2008

31 for 21: A Message from Mom

I can hardly believe it has been 31 days. I will admit that blogging for 31 straight days has created some tension in the household for Sarah and me. The guys are demanding dinner, but we are blogging. Matt wants us to come to his soccer games, but we are blogging. Everyone is out of clean underwear, but we are blogging. The milk jug is empty, but we are blogging. Dad wants to do his work on his computer, but we are blogging. The school bus is beeping it's horn at 6:30 in the morning(bet the neighbors loved that), but we are blogging. I'm late for work, the excuse: I was up all night blogging... you get the picture.

In all seriousness, what a super idea to post for 31 days in support of Down syndrome awareness month. Thank you Tricia. Sarah and I have just recently found this wonderful world of blogging. Let me tell you how this all came about. Sarah and I met Melissa Riggio years back when we first attended a national Ds convention and have been following her musical adventures ever since. I was at work when I received the first email alert of Melissa's untimely passing. I immediately did a google search for additional information and that is when I stumbled upon Tara Marie's blog about her beautiful Emma Sage.

I continued to read through other blogs Tara has listed and I repeatedly saw a square box with "Praying for Parker." Finally I clicked that box and up came these adorable pictures of Parker. Upon closer examination I discoverd he is Down syndrome and has a trach. My eyes immediately welled with tears. Not because I was sad for him, but because after nineteen years I finally found another child just like my Sarah. Can you believe in all these years I have never met another child with Ds who has a trach. All these years I have felt so alone with that part of our journey. Soon I found a link to sweet Maddy in Cinninati who also has a trach. Now I'm hooked. I find myself running to the computer the minute I get home from work to continue exploring. Sarah is perched right next to me as we look at photos and I read her the stories.

We started following so many cute and adorable kids. When Matt came home from school he would ask, "How's Parker; what did Ella Grace do today; did Megan have her sleep study yet?" We were all hooked. It did not take long for us to figure out there are not too many sites about teenagers. That's when the idea of Sarah's blog started to take shape. I thought about the different stories we could tell of things I fretted about when she was a toddler. All the fun high school experiences that I wondered if she would ever have a chance to do and has now done . And we could show all the skills she has aquired. That's when it hit me that this needs to be Sarah's blog. Sarah blogging her own story.

Of course when Sarah was born, the word blog would not have passed spell-check. What a minute, when Sarah was born I was typing on an IBM Selectric typewriter (which is why my boys think I roamed earth with dinosaurs), so we didn't even have spell check. I admit it has taken quite a few hours to get set-up and go live. And we are continuing to learn along the way.

That brings me to another issue. During the month, we have been tagged and zapped and sent bloggy awards. We are touched and honored but we have not responded yet to any of them. Please don't think we are being rude. I have yet to figure out how to get those imbedded into our blog. I finally broke down and bought "Blogging for Dummies" last weekend so hopefully I can figure it out soon.

In closing, let me say we have been humbled at the response we have been receiving. Words truly cannot express how overjoyed we have felt in knowing that Sarah's story has given a small glimmer of sunshine to families in showing that the journey only gets better with each passing day. I am continually in awe of so many of you. In truth, I started out thinking we were going to be helping younger families, yet what I have quickly realized is we are the ones that are receiving. It seems each night I stumble onto a new site that gives Sarah a sweet new face to remember and helps me uncover truths and pains that I have buried over the years. I am so grateful to Lisa, with her handsome little Finn, for telling her story in such a poignant and tender manner early in their journey. And I would be neglectful in not acknowledging that our connection to all of you would not have occured if it were not for Melissa. Was that By Chance or By Design? To the Riggio Family, you continue to be in our prayers. We will never forget your amazing daughter and what your entire family has meant to the Ds community.

18 comments:

sheree said...

beautiful. Let me just say, I am BEYOND grateful that you happened to stumble upong blogging and decided to give it a try. It has been so therapeutic for me to see these pictures of Sarah and for her to tell her side of these beautiful stories.

In fact, I was chatting with my best friend just yesterday, who is also a reader of your blog (she doesn't ever comment though) and she was telling me about all of the reasons she loves Sarah, as I nodded my head along with everything she was saying.

I can only hope my Gabby grows up to be JUST like Sarah. I know it can be a tough journey, but Sarah, you are a shining star!

Michelle said...

I can not even begin to tell you what it's been like for my husband & I to read Sarah's blog. From the first day I began reading - he and I were glued to the computer, looking at pictures of Sarah, all dressed up & going to a dance. It was like being given a crystal ball - a glimpse of a possible future for our Ruby. We have high hopes for her - but most of all that she has friends, and is happy.

I hope you continue blogging - Sarah, it is so wonderful to see your pictures and hear about your life and adventures.

Leah said...

Welcome to the world of blogging! My daughter Angela is 12, (Her 13th birthday is in June, but if you ask her how old she is she'll say "almost 13!" and has since the day she turned 12. LOL) Anyway, I started blogging 3 years ago, and recently started a blog for Angela to do herself. I was hoping to get her interested in writing, but so far no luck. LOL

JRS said...

I can't tell you how much I have looked forward to each new blog post. My Sophie is only 15 months old and you have given me a really special gift by sharing your stories and pictures. It is my deepest hope that as she gets older, she'll have friends like yours Sarah. That she'll have trips and memories that lift her up and let her know she is included and loved. You are an amazing young woman and your family is pretty special too. Keep on blogging!
---Jen

Anonymous said...

Your message made me cry... What a wonderful mom you are and someone for all the rest of us to look up too. I know my daughter does, we talk about you and Sarah all the time. I see my own daughter molding into the same kind of wonderful mom you are, we have some angels for sure!

A'Reian's Grandma

datri said...

Thank you Sarah & Sarah's Mom for blogging. I always look forward to reading about how Sarah's doing. It is so inspiring!

Karly said...

Thank you so much for sharing your lives with us. It means so much to have a glimpse into how great the future can be for our children.

Momma M said...

I laughed out loud at the Blogging For Dummies. You're doing a great job. The importance isn't in the design, but in the message. Your message rings clear and is appreciated. Love and kisses!

Lisa said...

Joyce, I am so touched and honored to be mentioned in your and Sarah's blog. So many times you have left a comment on my blog and I have wanted to reach out to you via email, but since I don't have your email address, I can't (you can reach me, by the way, at luckyme3n3@gmail.com). You and Sarah have done a wonderful job with this blog and I am grateful to have the opportunity to have a window into your life each day. (((hugs hugs hugs))) Joyce and Sarah!

Michelle said...

Isn't it amazing how quickly blogging can suck you in?! :) You get so caught up in the lives of those you read about, even if you've never met. I'm glad you and Sarah have decided to join this blogging community - it's been fun reading about Sarah's growing up years!

Tara Marie said...

Happy 31 for 21.....I've so enjoyed this month [and like you, I'm spending way too much time clicking and reading]

I am so happy that you stumbled upon our blog.....and I so look forward to walking this journey with Sarah and her family.

It truly is an amazing ride!!!

Kacey Bode said...

Blogging is definetly addicting, and also so very theraputic. It is so nice to find people who have been or are where you are in life. I cannot tell you how overwhelmed with emotion I get when I check Sarah's site. For me she is a glimpse into the future, and a wonderful one at that. This site warms my heart and calms my fears!! Thank you both so much for blogging, and keep it up!!

JennyH said...

I love this blog! I think you 2 have done a great job with it.
Keep up the good work- you have many readers!

Mrs Wibbs said...

I love your (Sarah's) blog, and am finding it reassuring to know that it gets better - when so much out there would have me believe otherwise... Sarah, you're an inspiration and I hope Tom gets to do half the stuff you get to do when he grows up!! You are a star. And so are you, 'Sarah's Mum'...

Mrs Wibbs :o)

AZ Chapman said...

Hi Sarah and family

My name is AZ and I have been reading your blog f this month Sarah's mom I totally understand about your blogging block my grades are not that good this semester due to me trying the get it down changed. Come visit I have disabilities as well. NLD and Cp.

PS I love the fall pics and your story of tramp were y mainstemed in high school?

WheresMyAngels said...

One of my good friends has a son with DS whom is around 23 now I believe. He also has a trach, sadly they do not blog. I sure wish she did, cause I could use a Danny fix. This boy is amazing. He has coded so many times and was not suppose to be here anymore.

I'm so happy to read about other teens with DS. There is a Yahoo Teen and Adult List Serve I belong too. But Blogging is so much better.

jessica @ raising joey said...

A big thank you to Sarah and Joyce for blogging with us this month! I've enjoyed reading Sarah's favorite fall memories each day!

Blogging DOES get addicting I must say! There's times that my husband just rolls his eyes at me when I'm on the computer, hahaha!

Chris said...

So glad you and Sarah have joined the blogging community. Your blog is so helpful because as you say, there really aren't a lot of blogs focusing on the teenagers with Ds. I find we parents with little ones are so hungry for a glimpse into the future. Thank you so much for providing so a beautiful picture.