The Insane Inflatable 5K

This weekend Kayla and I joined Lucas and Joe in participating in a 5K run ... ok it was mostly a walk! We (Kayla and I) are not runners, haha!

This was my kind of 5K though since running wasn't the main part of it; having fun was. The vast majority of people seemed to be walking this 5K. Along the route were several large inflatables and that is where the fun came in: The Insane Inflatable 5K

One of Lucas' teachers was there and caught the start of the 5K - no one realized Kayla was going to get up the inflatable as fast as she did - she was in beast mode!

Even when we were walking Kayla lagged behind as her pace is not as fast; Lucas was encouraging her to walk faster with little spurts of runs.

We had fun and I'm sure we'll be doing this again next year!

Speaking of running ... Lucas ran in his third Cooper River Bridge Run 10K earlier this month. His goal was to beat his time from last year and finish under 48 minutes and he did it! He finished in 47:05! He also represented LuMind IDSC raising money for Down syndrome research. Donations are still accepted!

Lucas' Second 10K

Lucas is running in the Cooper River Bridge 10K for the second time. He wants to beat his time from last year and finish in under 50 minutes.

He also wants to continue raising money for LuMind RDS and support Down syndrome research.

Last year he raised almost $700 so this year his goal is to hit $800.

All donations will be matched 3:1 (!!!) through March 21 - World Down Syndrome Day. A $25 donation will turn in to $100 donation.

Will you please consider supporting Lucas with a donation? He will be so appreciative!

Thank you!


Cooper River Bridge Run 10K on Crowdrise

Double Digit Birthday

Ten. Lucas is ten. How is it even possible that a decade has passed since I gave birth to this sweet boy of mine?

But it's true. I blinked and he's ten years old today.

Our annual birthday pancake tradition at IHOP

He still enjoys all the same things he has for the past several years: reading, Harry Potter, Minecraft, soccer, and chess.

(First place in a tournament a couple of weeks ago!) 

He's still my little boy with a heart of gold. He's still caring, empathetic, self-less, friendly, social, and sometimes still wise beyond his years. We still contribute to the "donation jar" that he started a couple years ago. Regularly donating what's been collected and starting over.

A couple months ago he ran in a 5K to begin his training for the Cooper River Bridge again. He ran this race last year (finished 3rd in his age group) and has a goal to beat his time and finish in under 50 min.

He's also, again, running for a purpose. He's raising money for LuMind RDS Foundation, as he did last year. If you'd like to make a donation and help him reach his goal I know he will be so thankful.

I can't wait to see where he'll go and what he'll accomplish in the future; but I'm also in no hurry for him to grow up. Time, slow down a little.

Happy 10th birthday Lucas!
"I love you more!"

He "Got Over It"

Earlier this year Lucas told Joe that he wanted to run in the Cooper River Bridge Run - a 10K race that Joe ran a few years ago. So Joe registered them both and they trained when they were able.

A tag line of this run is "Get Over It" - ie getting over this bridge.

The only other race Lucas has participated in was a couple years ago when a friend organized a 3.21 Run/Walk for World Down Syndrome Day. I was surprised that day when he ran the whole thing as we anticipated he would run for a small part of it and then walk the rest of the way - but he hung with the race organizer and ran the whole distance.

I wasn't sure how his first 10K was going to go, but he was determined to do this race.

I needn't have worried.

Lucas conquered his first 10K. He finished 3rd in his age group of 82. Out of 32,623 participants, he finished 2980 overall. His time was 52:34 with a pace of 8:27/a mile.

He also finished 1:05 ahead of his dad. Bragging rights, right there!

Right after the race Lucas said he wanted to do it again next year.

He's following in Joe's running footsteps, not just by running races, but also running and fundraising as a representative for LuMind Down Syndrome Research. He raised almost $700 for LuMind. So proud of this kid!

Finding his and Joe's names at the expo

Ready to run

Finished!

Red and tired faces

The 3rd place finish medal he received

His exciting day didn't end with the race. That afternoon he scored a goal in his soccer game; which his team won and finished their season undefeated.

His day ended at the playground ... where he found $5.

A great day indeed!

Not Special Needs and His First 10K

Today is World Down Syndrome Day - March 21st because people with Down syndrome have 3 copies of their 21st chromosome.

The past few years the CoorDown organization from Italy has produced some great PSAs for WDSD, and the one for this year doesn't disappoint.

It's about describing people with disabilities as having "special needs" - and although I have, and do, use that description, I haven't always felt comfortable with it. There's a nagging feeling in the back of my head when I say "special needs" ... which I blogged about 5 years ago in "That Word Special."

I was glad to see CoorDown put a video out that mirrors my thoughts: Not Special Needs, Human Needs. Kayla doesn't have special needs - she has human needs.



And another note on World Down Syndrome Day - as in years past, all donations made today to LuMind RDS will be matched 3:1. How great is that? A $25 donation will be matched with $75 turning that donation into $100.

In more news - Lucas is following in Joe's running shoes. He's running his first 10K in the Cooper River Bridge Run on April 1st. And just like Joe, Lucas is representing LuMind and raising money for Down syndrome research. If you're able to support him in reaching his goal he would really appreciate it! Any donation made today through his Crowdrise page will also be matched 3:1 as the donation goes to LuMind. Thanks for any support!

Survey on Opinions on Medical Research for Down Syndrome

Researchers at the Mayo Clinic are conducting a survey to learn about what parents and individuals with Down syndrome think about medical research advancements and priorities for Down syndrome.

The information gathered in this study could possibly be used to advocate for the needs of the Down syndrome community in further medical research.

Research into Down syndrome can affect more than just the Down syndrome population - important research is being done on Down syndrome and Alzheimer's which could have implications on the general population of Alzheimer's patients. There are also studies on Down syndrome and cancer; while individuals with Down syndrome have a higher incidence of getting leukemia they also have a higher survival rate - and they have a lower incidence of getting some other types of cancer.

For more information on the latest in the field of research and Down syndrome see LuMind and GDSF websites.

To take the Opinions on Medical Research survey if you are a parent of a child with Down syndrome age 12 and over click here; if you are a person with Down syndrome age 12 and over click here.

(The survey asks for opinions on medical interventions and medicines that do not exist and have not yet been developed.)

Grab This Button

<a href="http://mdbeau.blogspot.com/2016/09/10th-annual-31-for-21-blogging-for-down.html"><img src="http://i185.photobucket.com/albums/x198/wish4rk/TTR31for21-5.png" /></a> <a href="http://mdbeau.blogspot.com/2016/09/10th-annual-31-for-21-blogging-for-down.html">Grab This Button</a>

DS Connect: The Down Syndrome Registry

If you are the parent of a person with Down syndrome, or are an adult with Down syndrome, have you heard of, and have you registered with, DS Connect: The Down Syndrome Registry?

I've blogged about this registry before, but just in case there are new parents out there who have stumbled on my blog I wanted to mention it again.

The registry is maintained by the National Institutes of Health and has many consortium members to include (in no particular order) the NDSS, NDSC, SO, GDSF, DSAIA, DSI, IMDSA, LuMind RDS, and JLF.

The registry is where individuals and professionals can set up private accounts and be connected for research studies. You control the information you put in the registry via a secure and password protected account.

Researchers can access de-identified aggregate data to identify target populations for study or trial planning/recruitment.

The goal is to have 10,000 families registered and they are still well short of that goal, but are making some progress (almost 3500 registered families).

Here is the FAQ page to answer many more questions.


Grab This Button

<a href="http://mdbeau.blogspot.com/2016/09/10th-annual-31-for-21-blogging-for-down.html"><img src="http://i185.photobucket.com/albums/x198/wish4rk/TTR31for21-5.png" /></a> <a href="http://mdbeau.blogspot.com/2016/09/10th-annual-31-for-21-blogging-for-down.html">Grab This Button</a>

WDSD: My Friends My Community

Today is World Down Syndrome Day: Mar 21, also written as 3/21, chosen because people with Down syndrome have 3 copies of the 21st chromosome. Trisomy 21 in medical terms.
The theme, or Call To Action, from Down Syndrome International for this year's WDSD is #MyFriendsMyCommunity: The benefits of inclusive environments for today's children and tomorrow's adults. They ask that you show the world "how persons with Down syndrome live and participate in the community alongside family, friends, peers and the public."

The more that today's children with Down syndrome are fully included in their schools and communities, the more acceptance they will have from their peers when they reach adulthood. The more inclusive settings now ... the more commonplace it will be for their future.

One of the ways individuals with Down syndrome are participating in their communities and with their peers are through higher education programs at colleges and universities across the states. Check out Think College for a list of participating programs in your state.

Students in these programs are taking some academic courses along with their peers, continuing to improve on independent life skills, and gain employment skills; along with this experience comes a full college tuition as well.

Think College provides a great list of resources for how to pay for college. One of those ways includes scholarships; there are several organizations devoted to giving scholarships to students with Down syndrome such as Ruby's Rainbow.

Ruby's Rainbow awards scholarships up to $3000 per selected student. Their 321 Pledge is simple: donate $21, pledge to be kind and considerate to all people, and ask 3 people to do the same. Will 3 people join me in donating $21 to this fantastic scholarship opportunity for people with Down syndrome?

Don't forget to also leave a comment on my 10 years of blogging post (even if the comment is just saying "Happy WDSD!") For every comment I'm donating $1 to LuMind Research Down Syndrome where donations are matched 3:1 for WDSD.

A Decade Of Blogging

March 16 marked ten years of blogging ... 10! (insert fireworks, confetti, and poppers)

How did that go by so fast?

When I started blogging Kayla wasn't quite 3 yet, we livec in NM, and Lucas wasn't even born.

We've moved twice since then, Joe's also deployed twice and retired from the military, Kayla will be a teenagerthis summer, and Lucas is 8.

A couple of years ago I thought I might be finished blogging, but I'm still hanging around.

When Kayla turned 10 I wrote about my experiences thus far of raising a child with Down syndromeand I still feel the same after blogging for 10 years. No great life lessons from me, no profound knowledge of what life is like for our family through 10 years of blogging. We are, simply, just a family.

I don't feel like I have much to add, at this point in our lives, about Down syndrome. Maybe when Kayla is transitioning to high school ... or out of high school ... there will be a lot of transition topics to blog about. It seems so far away, but I know it will be here before we know it. For now I will keep raising awareness, and acceptance, about Down syndrome.

As I mentioned in yesterday's post, Monday is World Down Syndrome Day. Not just here in the United States, but in places all over the world people are celebrating individuals with Down syndrome. Can you imagine that? It really wasn't that long ago that babies with Down syndrome were shuttered away in institutions and their life span wasn't even 10 years. Even though it seems we've come so far since then, and in a lot of ways we have, there is still so much more progress to be made. Babies with Down syndrome are still being shuttered away in orphanages and institutions in Eastern Europe.

Even though progress has been made, Down syndrome continues to be the least funded condition by the NIH despite being the most common genetic disorder. Important research is happening by grants provided by other organizations. Research is so important because you don't know what you don't know ... there are connections with Down syndrome and cancer, Down syndrome and autoimmune diseases, Down syndrome and Alzheimer's. Why not research and find out what is going on, what is the connection, how to help people with Down syndrome and the rest of the population?

One of those wonderful organizations focusing on research is the LuMind Research Down Syndrome Foundation. Once again all donations made to LuMind for WDSD will be matched 3:1.Your $25 donation will turn into $100. This 3:1 matching for WDSD starts TODAY, Saturday, Mar 19 and goes through Mar 21. So three days' worth of donations will be tripled.

A few years ago I started donating $1 for every comment on my blogging anniversary post to LuMind for WDSD where my donation will be matched 3:1 and I am doing that this year as well ... so comment away on this post!

I'd also like to put out a little challenge to any readers, on this, my decade anniversary of blogging, I'm hoping that 21 people will consider also donating to LuMind and have your donations matched 3:1. Donate $10 for 10 years of blogging, or $21 for the extra 21st chromosome. Donate in honor of Kayla, or someone else you know with Down syndrome.

As always, thanks for reading and following along on our journey.  

R is for Running, Racing, and Research

Joe is the runner in this family. He ran his first marathon in 2012 and this Sunday he will run in his second Marine Corps Marathon, and fifth overall (plus a half thrown in there).

Last year we went to DC to cheer him on and it was a fun time for the kids cheering for everyone and then seeing Joe running towards us.

Since he started running he's been representing Research Down Syndrome Runners raising money for Down syndrome cognition research. RDS recently merged with LuMind which became the LuMind RDS Foundation. They both had the same mission and end goal of raising money for cognition research and they used the same scientific advisory board; now resources can be pooled for one streamlined organization with the runner's program staying active.

If you'd like to support Joe's race this Sunday, and, ultimately support Kayla and all individuals with Down syndrome, please consider a donation to his fundraising page for the Marine Corps Marathon. Every donation is appreciated.

Down syndrome is one of the most common genetic conditions, yet the least funded. LuMind is doing great things in the field of Down syndrome cognition research with providing grants (10.4 million since 2004) for research and we'd like to support this effort in any way that we can.

We had an opportunity to support LuMind RDS in a fun way this past summer - we participated in the 2nd annual Race for Research. This was a 3 day road rally/scavenger hunt through SC/NC with a NASCAR-related theme. One of the highlights of  the trip this year was getting a ride in the pace truck for a couple of laps at Darlington Raceway.

Met NASCAR legend and Hall of Fame-r Cale Yarborough

Running across finish line at Charlotte Motor Speedway

Met current NASCAR driver Austin Dillon

Another legend and International Motorsports HOF-er Humpy Wheeler (also the voice of Tex in the movie CARS) signed Lucas' forehead, and the dollar he gave him for knowing the general area of where Maine is!

Fundraising Websites - Crowdrise
Grab This Button

 

C is for Cure

After having a baby with Down syndrome you will inevitably come across a discussion, or asked directly, some version of the hypothetical question "If you could cure your child of having Down syndrome would you?"

I've never put too much thought behind the question, because hypothetical. There wasn't a reason to discuss if I would or wouldn't because there isn't a cure and despite all the research into Down syndrome being done I didn't see how there could ever be a cure.

Down syndrome happens at conception. It's when the 21st chromosome coming from the mother or father doesn't split and the new developing fetus ends up with 3 copies of that chromosome instead of the typical 2. Once that extra chromosome is there, it's there, right? I mean you can't just remove a chromosome after you are born with it, right?

Well a recent press release announced: New Down syndrome Therapy Discovered. A headline like that is definitely eye-catching. The press release is based off the paper "Correction of Down syndrome and Edwards syndrome aneuploidies in human cell cultures."

I wondered how can you 'correct' Down/Edwards syndrome? You're talking about the chromosome in a persons body that is replicated in every cell (unless translocation or mosaic, but still).

I'm not a scientist and I can't write like a scientist, but the gist of the article is that they applied ZSCAN4, a protein, to cells in culture (from 4 individuals with Down syndrome) and after a few weeks they noticed the emergence of up to 24% of cells with only two rather than three copies. G-branded chromosomes also showed up to 40% of cells with normal karyotype. The conclusion is that "direct, efficient correction of aneuploidy in human fibroblast cells seems possible in vitro using human ZSCAN4."

If I'm interpreting this correctly they seem to say that if Down syndrome is confirmed prenatally that they can inject this ZSCAN4 in the fetus and somehow make the 3rd copy of that 21st chromosome disappear? It boggles my mind. How soon in the pregnancy would this have to be administered? Does it make all the extra copies of the chromosome somehow disappear? Does it change the developing fetus from having any characteristics associated with Down syndrome? Does it mean a karyotype would come back with all chromosomes having the typical 2 copies?

Dr Michael Harpold, Chief Scientific Officer of LuMind RDS Foundation published his comments on this new research. He offers a scientific perspective on the study with the conclusion ..."the scientific research is interesting and otherwise could lead to further insights on chromosomal or cell maintenance and functions generally as well as in Ds. This is a research area among a very broad range of other areas that will continue to be monitored. However at this stage, this research study and associated approach would not represent a  research area closely relevant to further understanding cognition or development of an associated practical cognitive or Alzheimer’s therapeutic in Ds.

The question is still hypothetical for me and not likely to ever be something that would apply to Kayla; as it is in this study it would be applied in vitro.

Instead of talking about possibilities of a cure that I don't think will happen in Kayla's lifetime (what would that look like anyway - how much would that change her as a person?) I prefer to talk, and think, about research that focuses on Alzeheimer's and improving cognition.

No, I don't want to inherently change Kayla, but Down syndrome does come with some issues that if I could help her with, why wouldn't I? I don't value Kayla based on her IQ - she has value because she is a human being, not because of the number of an IQ test - but if there was something that could help improve her cognition? Well that would help improve her independence and maybe she wouldn't struggle so much with things that we take for granted. How is that any different than me seeking medical treatment for her Obstructive Sleep Apnea?

So for me, a cure is a moot point.

C is also for a picture of Kayla's chromosomes, her characteristics, and Celiac disease.  

Grab This Button

   

If I Had One Hundred Dollars

Going through Lucas' school folder I found this writing prompt he had on the 100th day of school.

The prompt was If had one hundred dollars ... and to write about what you would buy and why.

My sweet boy.

I love that when given this prompt the first two things he wrote about were for giving to others.

"I would give some to the LuMind (I can see that he attempted to write Foundation, but gave up on the spelling and erased it) and some people who don't have enough money to buy stuff and I would spend the rest for a new game." 

So Lucas is putting his money where his mouth is, or rather, where is writing is! He is donating money to the LuMind Research Down Syndrome Foundation in honor of his sister on World Down Syndrome Day when donations are matched 3:1



All donations will be matched 3:1 during the 3-2-1 countdown to World Down Syndrome Day (donations made Wednesday through Saturday, Mar 21st, will be matched 3:1).

What better time to donate than now, when as Lucas explained in the video, you can donate $5 and an anonymous donor will match it with 15 more dollars?

Lucas wanted to know if other people would donate $5 with him so there will be a total of $20 being donated each time. So I set him up with a fundraising page if you would like to join him in donating $5 in honor of Kayla and all people with Down syndrome. Thank you!

Lucas H's Personal Page for LuMind Foundation's Personal Fundraising Center

Also, I'm donating $1 per comment on my blogging anniversary post to LuMind as well.

   

A Blogging Anniversary

This is my ninth year of blogging and while there are times I think it's time to hang it up, today isn't the day.

Today I will keep up with a tradition I started a couple of years ago on my 'blogiversary' - donating $1 for every comment on this post to an organization centered on Down syndrome cognition research.

LuMind Foundation and Research Down Syndrome recently merged to become LuMind Research Down Syndrome Foundation. This is exciting news since they both shared the same mission of Down syndrome cognition research and used the same scientific advisory board. Now resources can be combined for greater power in focusing on cognition and Alzheimer research. My family has supported both organizations with Joe raising money for the RDS Runners program - which will carryover to the merged organization - I'm excited to see them become one organization.

As in years past, for World Down Syndrome Day (Mar 21st), all donations to LuMind RDS Foundation will be matched 3:1.

Please join me in celebrating not only my blog's anniversary, but celebrating Kayla on World Down Syndrome Day, by leaving a comment on this post.

Thank you for following along with our family's journey.

  

Giving Tuesday

The Tuesday after Cyber Monday, which follows Small Business Saturday, which follows Black Friday, which follows Turkey Day ... has come to be known as Giving Tuesday.

Giving Tuesday is a day dedicated to giving back. Giving back to others, giving back to your community, and giving back to charities and organizations that are doing good to helping others. Giving back can be donations or volunteering your time.

Here are a few organizations that we believe strongly in for their work and support in Down syndrome cognition research, LuMind Foundation, Research Down Syndrome, and the Jerome Lejeune Foundation USA.

A generous donor as pledged to match 1:1 for gifts of $1000 to LuMind, but of course any amount is appreciated. Donations can be made here. LuMind has put together this list of 10 reasons to support LuMind and cognition research with a donation.

The past few years Joe has combined his participation in marathons with raising money for RDS Runners. Donations to Research Down Syndrome can be made here.

Joe's recent completion of the Marine Corps Marathon:

Dr Jerome Lejeune is the geneticist who discovered that the medical reason for Down syndrome is 3 copies of the 21st chromosome. The original Foundation, based in Paris, was founded to carry on Dr Lejeune's work. The main focus is on research, care, and advocacy for people with Down syndrome, but they also fund research into other genetic intellectual disabilities such as Fragile X, Cri du Chat, and Rhett's syndrome.

Since it's founding the Jerome Lejeune Foundation has supported researchers in the U.S. and after being engaged with the research community here, the Board voted to establish the Jerome Lejeune Foundation USA with the same mission as the one in Paris: "...serves those with Down syndrome and other genetic intellectual disabilities in a spirit of profound respect for their inherent human dignity, and that of all human persons." Donations can be made here.

What are some organizations that you are supporting during #GivingTuesday?

 

Why Research On Down Syndrome?

Years ago it was thought that individuals with Down syndrome weren't capable of, well, just about anything, so it was standard practice to immediately institutionalize babies born with Down syndrome.

I've said it before, and I'll say it again, you put any baby in an institution without stimulation, love, opportunities to grow and learn ... of course they won't learn anything!

Along with the institutionalization there was the attitude that there was no reason to do research that would help with a better quality of life.

Things have changed and thanks to research more is understood about Down syndrome. Despite the fact that Down syndrome remains the most common chromosomal disorder but the least funded by the NIH, research is being done by a number of organizations who realize the importance of research and Down syndrome.

They are discovering that by researching the genes and secrets that are held on that 21st chromosome they can also research medical mysteries beyond Down syndrome - issues like Alzheimer's and cancer.

Even as recently as 5 years ago I blogged about individuals with Down syndrome having a higher chance of being diagnosed with leukemia, but also a higher chance of beating cancer.

Does Study Of Down Syndrome Hold A Possible Cancer Cure? is a more recent article bringing light to the need for research on the 21st chromosome and the positive impact it can have on a larger part of society. "Therefore, our friends and relatives with Down syndrome are, even if unintentionally, enabling discoveries about how cancers develop and how to combat them." 

Exactly. Research is important and it's why we support the work that organizations like LuMind Foundation, Research Down Syndrome, Global Down Syndrome Foundation, just to name a few, are doing. It's why it's important to raise awareness and take action on research and spread information on the Down Syndrome Registry.

DS Connect: Have You Connected?

If you are the parent or legal guardian of, or an adult person with Down syndrome, have you signed up with DS Connect yet?

What is DS Connect? It is a national registry for individuals with Down syndrome and their families funded by the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development. The registry will connect volunteer families with researchers, clinicians and other professionals for research studies.

The need for the registry was explained in two Down syndrome consortium meetings about 4 years ago.

This need for contact registries for DS has been underscored by the concerns of participants in two recent meetings, a Down Syndrome Registry Meeting sponsored by the National Down Syndrome Society in September, 2010, and Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks, sponsored jointly by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and the Global Down Syndrome Foundation in December, 2010.  The NICHD recognizes that the DS advocacy community has already made significant strides towards the creation of a contact registry relevant to engaging DS individuals and their families in basic, clinical, and translational research.  However, significant issues remain with regard to research databases and biospecimens repositories.  With regard to research databases, the NICHD recognizes several goals for these resources.

Many other medical conditions have registries, until now there hasn't been one for Down syndrome. There was a time when research on Down syndrome wasn't important; yet society has come to realize it is important. It is important to discover how and why that extra chromosome affects an individual. Up to date and accurate information can only help further research which in turn helps in understanding Down syndrome.

This is not about finding a cure for Down syndrome - that extra chromosome happens at conception - but about a registry that can help advance research discoveries, develop treatments and improve the quality of life for people living with Down syndrome.

The registry is what each family makes of it. You register with your own user name and password on the secure site and you control what and how much information you want to include. You don't have to do it all at once, you can register and log back in at a later time to input medical information.

Researchers can then access de-indentified aggregate data to identify target populations for study or trial planning/recruitment. Families can explore the data that has been entered to learn more about Down syndrome and how other families have been impacted.

I know there are many questions out there about the registry, who is maintaining it, how it will be used, who has access etc ... here is the link to the FAQ page where most of the questions are answered.

The goal is to have 10,000 individuals registered and the registry is currently at 2356.

Founders of The LuMind Foundation have put out a challenge to help spread the word about the registry and increase registration. Throughout the month of Oct for each new registrant the founders will donate $100 to LuMind. For every registrant over 125 the amount will be doubled.

Since the beginning of Oct there have already been 74 new people registered. If you're not yet registered will you take the challenge and register? No cost to register and you help increase research funding to LuMind Foundation at no cost to you.

If you are registered will you help spread the news about the registry, and the challenge?


 

Welcome to 31 for 21!

October 1st = The first day of Down Syndrome Awareness Month and the month long blogging challenge of "31 for 21". It's NOT too late to sign up and participate! You can join in even if the month is half over with! Blogging for 31 straight days might seem daunting, but I assure you nothing bad will happen if you end up not finishing the month, or skip a day or two. It's just a fun blog challenge to do in the month of October. Bring some awareness, advocacy and acceptance to the world!

In case I have any new readers - and hi to all my 'old' readers! - I just wanted to do a quick introduction about myself and why my reason for blogging for 31 for 21.

I'm a SAHM, by choice (and which I feel fortunate to have the choice) to two kids. Kayla is our first-born child and she is the reason I blog for 31 for 21. She has that extra chromosome on her 21st pair and came with a diagnosis of Down syndrome. She also has Celiac disease and ADHD. And probably some sensory issues as well, but no formal diagnosis for that. She loves ballet, drama, and being outside.

Lucas is our first-born son (I know he would appreciate being described as 'first-born' something!). Although he is younger than Kayla by almost 5 years, he is a great brother with a big heart and watches out for her (even making sure other people know she can't have gluten!). He has to be right in the middle of everything or feels he's missing out on something, and he's a voracious reader. He read through most of the Magic Tree House books this summer. He also likes being outside and playing soccer.

We're a military family (Go Air Force!) soon to be with a 'retired' in front of that though! I am also a consultant with Discovery Toys, a Family Partner with Family Connection SC, and a volunteer with LuMind Foundation.

We found out at birth that Kayla has Down syndrome; although it was suspected during my pregnancy based on the results of the prenatal screening I had done. Those results indicated I had a 1 in 88 chance of having a baby with Down syndrome. We declined the amnio. You can read about her diagnosis in this post: Guilt. The story of that post became the basis for my story in the book Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives.

I've been blogging for 8 years now and participating in 31 for 21 for 8 years as well! So, welcome to my blog and welcome to "31 for 21!"
Grab This Button

<a href="http://mdbeau.blogspot.com/2014/09/8th-annual-31-for-21-blog-challenge.html"><img src="http://i185.photobucket.com/albums/x198/wish4rk/TTR31for21-5.png" /></a> <a href="http://mdbeau.blogspot.com/2014/09/8th-annual-31-for-21-blog-challenge.html">Grab This Button</a>