Wednesday, July 31, 2013

Denver Wrap Up & Setting the Stage to Make Critical Down Syndrome Research Happen

Here I am, more than a week past the Denver NDSC conference (sorry, can't bring myself to call it a convention - I just can't get past the negative stereotypes of middle-aged men in polyester suits learning how to flog vacuum parts, or 20-and-30-somethings dressed like comic characters, extolling the virtues of living in their parents' basements...), and I still had not yet written my own recap of the event, so here it is...

I went to Denver on my own this year, funding my flight with points from Expedia gained by all the travel bookings I've done at work over the past 12 months, and sharing a hotel room for 2 nights with 3 other women to keep costs down.  (Anyone who thinks 4 women can't share a bathroom and make a shower schedule work efficiently could learn a thing or two from us!)  I would have loved to have had Samantha with me, but I really wanted to be able to attend some of the sessions unencumbered.  There's always next year for that... 

After poring over the agenda in the days beforehand, I finally managed to map out what I wanted to see and hear, and saved aside some additional hours to help out at the IDSC table, where I knew I'd get to meet and mingle with lots of great people and give information about the organization to anyone who stopped by.  The sessions I chose were the Blogger's sharing session on Friday afternoon, the DSRTF session on Saturday morning, Global after that, and Alzheimer's research after that.  Sunday I reserved for the film festival, to see "Punk Syndrome," a documentary about a Finnish punk band comprised of 4 men with intellectual disabilities, including one, the drummer, who had Down syndrome.  The film was good, even if it was about 40 minutes too long...

One of the major highlights was getting to meet so many people I've known for so long through blogging, including, amongst SO many others, Kecia, Cammie, Monica, Renee, Melissa, Amy, Denise, Cate, Jawanda and Kacey, and getting to see Linda, Chrystal and Lisa again (I'm not linking anyone to their blogs here, because I can't remember who blogs anonymously and who doesn't and don't want to blow anyone's cover).  Oh, man, I hate writing who I saw, who I met, etc., because I'm missing so many others here and feel super guilty, and there were too many Facebook friends to recount, as well.  Maybe I shouldn't have listed anyone at all...yikes...

Our "We Miss You" message to Rochelle, who couldn't be there.

At the Blogger's sharing session

I didn't take many notes during the sessions, although I did learn a lot about research funding, mouse models and the fact that people with rheumatoid arthritis generally don't get Alzheimer's!  (I'd started to zone out during that session, but with those words I heard a collective gasp in the room as everyone jumped to attention and started scribbling notes furiously.)  I'll take a dose of rheumatoid arthritis with a prescription of Humira on the side, please, Doc...

On the heels of the conference, and totally relevant to much of what I listened to, much of what people were talking about there, something else that I want to share with you all is this exciting initiative, ONE21, which will be launching in just a few short weeks on 8/21.  Please read the info below, and visit the web site to stay on top of the details as they unfold!

"ONE21 is a new, national initiative of parents, researchers and other advocates for Down syndrome coming together for a common goal:  to give Ds research the support - and voice - that it so urgently needs. 
Research is not about finding a cure.  It's about developing breakthrough therapies and best practices that will help families better manage the host of chronic illnesses and other challenges that typically affect people with Ds each day.  
The harsh truth, however, is that Ds researchers lack the most basic tools and capabilities to advance their work to the next level.  Without them, we can't move from basic research to clinic trials to drug therapies that can improve our children's quality of life.
If you believe research can be a gateway to helping our loved ones with Ds live longer, healthier and more vibrant lives, then join us at" 


Tuesday, July 30, 2013

Inclusion and the Valuable Lessons Taught to Both Students and Teachers

Samantha is in an inclusive setting at school.  She is in a classroom full of her typically-developing peers, learning from the same curriculum, assisted by an aide who helps to keep her on task and modifies the work or instructions when needed.  And while this is nothing to do with the point of this post, I just want to add that I have absolutely no doubt that inclusion is not for everyone.  People can fight all they want for it, but if the child would thrive better in a more self-contained classroom setting, then why not do what's BEST for the child??  I would, and I know others who learned that through trial and error, and I applaud them for making the right decision for their child in the end, despite the criticism they were sure to receive from other parents, too high on their soapboxes to see what's right. 

Okay, off my own soapbox, back to my original message... 

In her inclusive environment, I have no doubt that not only is Samantha learning from her "typical" peers, and her teacher, but her peers and her teacher are also learning from her.  Just by her mere existence in their daily lives, I believe that she teaches valuable lessons:  Acceptance.  Tolerance.  Empathy.  Persistence.  Patience.  Unconditional love and friendship.  Individuality. 

I like to think they will carry these lessons with them for the rest of their lives.  They're important, and will assist them in their interpersonal relationships with others, in their endeavors to be good people, in their ability to care.

Teachers learn how to teach to each child's unique learning style.  They learn how to become more well-rounded educators, with experiences to share with other students-to-come who may also have differences.  Samantha's 1st grade teacher constantly strives to enhance her own education by attending conferences during her free time or reading books that explain the learning differences of different kids. 

The International Down Syndrome Coalition (IDSC) recently created a poster out of Samantha's experiences with her teacher last year.  I was so excited to help out at the IDSC table at the NDSC conference in Denver last weekend, with this poster hanging behind me, sharing my girl and our message with everyone.  One woman purchased 18 of these posters to give to the new teachers in the school in which she works.  I've been sitting on this for ages, desperate to share it with everyone, waiting until it was posted on their site, and now I, too, can show the world.  This photo says it all, shows the mutual love and respect that Sammi and her teacher have for each other.  Not only have they had the experience of the teacher/student relationship, but they are also friends.  And that is the most valuable takeaway of all.

This poster can be purchased from IDSC if you would like a copy, and is also on their FB wall if you would like to share the message.  :-)

Monday, July 29, 2013


This post originally appeared as a guest-post on The Narretto Family Blog on July 25th.  Re-posting here.  Thanks for the opportunity, April!
When April asked me to guest blog here this week, I thought, I have absolutely *no* idea what to write.  And, as my fingers grace the keys of my laptop even now, I still have absolutely no idea what to write.  My house is still and quiet, my daughter, Samantha sound asleep in my bed, where she crawled in after creeping out of her own room at 5:20am, my cats sitting on the table, an occasional paw batting at the cursor as it moves across the screen, but otherwise behaving pretty well.  This is the best way to write. 
I could write about myself, my life, what it's like to have a daughter with Down syndrome.  A little clichéd, as it's been done so many times before.  I could write about the desperate need for funding and research for Down syndrome, how urgently we need to get answers and treatments for the medical issues that so often plague our children when they are born, as they grow, mature into adults, and age mercilessly early.  I could talk about our birth story, the process of becoming who we became as the result of the diagnosis we received, but I'll leave that to the new parents - it's now their story to tell. 
Thinking as I type, I have come to the conclusion that I should write about my hopes and dreams for my daughter's future.  Pipe dreams, some of them, perhaps, but dreams nonetheless.  The possAbilities are endless.

When Sammi was born, a social worker came to visit us in my hospital room, bearing brochures and information.  One of the booklets, from our local Down syndrome association, held beautiful color photos of people with Down syndrome sitting at desks in classrooms, playing sports, laughing with friends.  Every stereotype, every misconceived notion that had entered my head over the dark and painful hours just prior to that moment, began to weaken, to thin, and eventually to shatter in a surge of joy and hope.  I'd had no idea...
I know, now, how important dreams of the future are.  How important they are to remember every day, to reach towards, to begin to grasp, to meet and achieve.  We've already had so many come to fruition - countless, really.  And, with every one, there's a whole new future to look towards. 
From where I sit now, the future looks like middle school and high school acceptance and popularity, continuing much as it does now.  This is a hard one - I feel like pretty much no one is accepted in middle school.  And, with the way things are now, pretty much every child and teacher in Samantha's school knows who she is, says hi to her as she passes by in the hall, comes over to greet her, excitedly, when we see them out in public.  Will that change?  Probably.  Do I hope that it won't?  Absolutely.
I dream of sharing stories with her, of giggling and devouring popcorn and watching movies, of spa days, of girls' weekends away for museums or concerts or shopping, of e-mailing or texting from school or work.
One dream of the future involves public speaking.  I want so, so much for Samantha to be a strong self-advocate, speaking for herself and others like her whose voices may not be as strong, showing the world the value and worth of people with differences, making a name for herself in the community, in the world, changing minds.  The kid certainly likes to talk, but will she speak in a way that will make someone want to listen?  Will she be able to build well-crafted, well-thought-out sentences to tell her story, to hold one's attention, to make a valuable point?
I dream of a day when she will rightfully yearn to spread her wings, to soar, to grow into an independent woman, go to college, to get a job, to meet a man and get married, to move out (but not too far...), to live safely, happily, securely.  To drive?  Perhaps... 
I dream of a day when I can accept all of that, to be comfortable myself in knowing she's fine, she's responsible, she's safe.
But for now, at the tender age of 7, I can relax a little, give her the tools, encourage her, watch her grow.  Like a flower, she blossoms so beautifully. 

Thursday, July 25, 2013

Check Out Where I Am Today!

Today I am not here, I am HERE, guest-posting on The Narretto Family Blog!  If you've never visited them, April shares wonderful photos and stories of her life and her beautiful family, including her handsome little boy, William, who happens to share both an age and an extra chromosome in common with Samantha.  Pop by and say hello, and share your hopes and dreams for the future of your child in her comments section!  Thank you, April, for the fun opportunity to join your blog for the day!

Wednesday, July 24, 2013

Another Day, Another Year

Today is my birthday.  And while I consciously choose not to dwell on the actual number of that birthday, I feel pretty darn good about it.  I may owe a big part of that warm, fuzzy feeling to a woman I was chatting to at the NDSC conference in Denver last weekend.  Sitting in the hotel lobby waiting for a friend to come pick me up, I started up some small talk with the woman and her adult daughter with Down syndrome who were sitting across from me.  The woman, obviously blinded by my youthful glow (haha), asked me if I was a sibling

Yep, you read it right.  A sibling.  Not like I couldn't be somebody's sibling, which I am, but generally the siblings of people with Down syndrome that attend the conference are not of parenting age. 

Somehow I managed to choke back my surprise and tell her that I was a parent (look of shock and awe #1) and that I would actually be 45 in 3 days (look of shock and awe #2).  My mind scrambled to find a way to mentally bottle her visible reaction to this news.  I think can can recall it pretty accurately, and that is what will get me through this birthday hump.  Her timing was impeccable. 

Steve surprised me with the most amazing, perfect birthday present when I got home from work yesterday.  I've been drooling over a particular camera lens for the last 2 years, and when he asked me for the model, I gave it to him but cautioned him that it was too expensive and I didn't really need it (I have another, somewhat less-practical version of it already), and that he could get me a set of flash-bouncers instead.  Well, he ordered the flash-bouncers (Professor Kobre's Lightscoop - can't wait!!), but when I got home from work, in addition to a cake, a beautiful bouquet of flowers and the most lovely rendition of "Happy Birthday to You" from my sweet girl, there was another present - the lens!  I feel like my life has changed forever.  :-)

It's a week of sweet celebration, too - I guess for this sort-of milestone birthday, it sure can't hurt.  Cake and presents last night, a department dinner outing to a country club tonight for work (including spouses), a lunch meeting and company birthday celebration for all July birthdays tomorrow (complete with cupcakes from the yummy cupcake store across the street from the office), and the tasting for our company holiday party menu on Friday (if you've never been to a tasting before,'s SO awesome being wined and dined for 2 1/2 hours on company time!!).  A trip up to New Jersey to visit family this weekend, and then I can wrap it all up for another year. 

Still sitting on a ton of posts I need to write...  At least I managed to pop out 2 this week!   

Tuesday, July 23, 2013

(3) 21 Down Syndrome Blog Hop

Meriah shared this blog hop the other day, a simple little hop that gives beaucoup info in a short, sweet little post.  And, as it currently stands, while I have massive numbers of posts swirling around in my head that need to be written, this will be my first in about a week, with no regular blog schedule in sight.  Summer school has put a little bit of a damper on my creative outlets - mornings are traditionally for leisurely writing or editing photos while scarfing down a bowl of cereal, child already at school, me already prepared to be late for work.  As always.  But with summer school starting an hour later than regular school, I have to be up and ready and have Samantha up and ready before I can take her to school, which happens to be on my way to work.  So...never late, and no time to write.

This hop asks for 3 things:

One truth (about Ds/our lives with Ds)
One tip (- information on something related to Ds/raising a child with Ds/or just parenting in general)
One photo

Quite simple on the surface, but I still have to think to come up with the answers.  So here goes...

One Truth:  Maybe I shouldn't say this.  I feel like it may be a bit too revealing.  Not like I mind revealing stuff, seeing as I have been blogging for the past 6 years, but some things probably just shouldn't be said.  But this is what comes to mind first:  I get jealous.  Like, really jealous.  For a number of reasons.  I know we're not supposed to compare kids, but maybe because Samantha is our only child, I feel that she needs to embody that typical child we'll never have as well as that amazing, enhanced child we do have.  I watch other kids with Down syndrome, pick out each and every thing they can do that Samantha can't, worry about why she can't, get frustrated with her, get mad at myself for comparing, wondering if, in my own overly-cautious parenting style, perhaps I haven't given her critical opportunities for independence or adventure or sports or dance or whatever.  To fly.  I get jealous of other children having siblings who are there to look out for and protect them, to support them way off into the future, after their parents are gone, who advocate for them at school, who play with them every day, share secrets, play some more, even argue. 

One Tip:  Don't compare.  'Nuff said.  It's one of those do-as-I-say-not-as-I-do tips.  Easier said than done, easier to dole out as advice than to take for myself. 

One Photo:  Y'know, I actually haven't taken many photos lately.  Sounds crazy, but it's true.  I just haven't had much time, and haven't felt like dragging my camera around with me.  Here's one I took a couple of weeks ago, after her bath as her hair was drying.  I think she looks so much like me as a child here.  I love that.

More to come soon, including a photo I've been sitting on for nearly two months that I can finally share, an end-of-the-school-year post (which will become a start-of-the-new-school-year post if I don't get my act together), a truly amazing fact I found out at the NDSC conference about Alzheimer's, and how wonderful the NDSC conference was, especially getting to meet so many blog/FB friends IRL.

Tuesday, July 16, 2013

Making Her World a Healthier Place

I've never blogged from my phone before now.  I could never get this Blogger app to load properly on my old phone, but I suspect I may now discover how brilliantly convenient it is, and find a whole new world has opened up to me!  I can now blog on my lazy backside as I lie in bed, or from the car on a long trip (with someone else driving, of course...), or maybe even from my hotel room at NDSC this weekend!
I really want to thank everyone who participated in the blog hop, either as participant bloggers, commenters or even as readers following along.  I loved the conversations and debates each post sparked, and am so grateful that this topic is being discussed right now.  The timing is important for several reasons.  Identifying what's important to us when it comes to the futures of our children with Down syndrome and those who will follow, especially those important medical issues that we'd love to see addressed sooner than later, is critical right now.  Research is beginning to happen, although not in the scale with which it needs to happen.  The samples just aren't available.  For researchers and scientists to be making the connections that they are is incredibly exciting!  But what next?  Do they have the necessary tools, the funding, the participation from our community and the biological sample base with which to pursue answers and, ultimately, important and life-altering treatments and therapies? 


And why is that?  Well, in my opinion, and in the opinion of others I know, it's because the Down syndrome community is vastly disorganized.  Don't get me wrong.  I'm not being critical here, I'm just stating fact.
There are too many hands in the pot, diluting efforts, duplicating efforts, stepping on each other in the unending quest for limited funding in a recession-torn world, too many broad and varied plots and plans and (very excellent and worthy) causes that need tending to, too many other things going on that supercede the critical need for research.   Funding is scattered to the winds amongst too many organizations all trying to do something different, when there are fundamental missing links that have to be created first (if you build it, they will come...). 

Centers for Down Syndrome Research Excellence.  A national patient registry.  A centralized Down syndrome biobank.

Down Syndrome Achieves is working to make vibrant Down syndrome research a reality.  Please read what they have to say at this link, and stay tuned in the upcoming weeks for the unveiling of a well-planned initiative that we can all get involved in to help strengthen research capabilities for Down syndrome researchers nationwide. 
When Samantha was born, research was probably the last thing on my mind.  Actually, for many years after she was born, research didn't really even enter my mind.  I was focused on growing an adorable baby into a beautiful, healthy little girl, focused on therapies, school, building social pathways...  I'm at a point now where things are clearer.  She's doing great, learning independence and what's right from wrong, gaining new knowledge every day.  Therapies have been mostly set aside for the time being, social activities are plentiful, doctor's appointments rare.  I feel that I have the tools to make her successful, have had my intro into the school system (and, while I know that's not always going to be so perfect, it is for now, and for that I am grateful), and can begin to focus my attentions and efforts on things that are more important for the long run, to keep her healthy, to help her continue to reach towards her full potential for many more years to come than would ordinarily be allowed, given the shortened longevity inherent in the pre-ordained path of the extra 21st chromosome. 

Looking at that beautiful, smiling, brilliant face in the photo above, thinking about the beautiful, smiling faces of your own children, shouldn't we do all that we can do to enrich their lives, make them healthier?  Live longer? 

I would do anything for my daughter, and suspect you would all do the same. 

Stay tuned.

Wednesday, July 10, 2013

Fireworks, New Phone, NDSC and a Blog Hop Reminder (in other words, Not Terribly Interesting STUFF)

Just as a reminder, the Blog Hop, What Mysteries do You Want to See Unraveled for the Future for Your Child with Down Syndrome is still open until Saturday.  If you blog, I'd love to hear your thoughts on this topic, and if you don't blog, I'd still love to hear your thoughts on this topic in the comments!  It's important that we're all talking about this, thinking about this, becoming unified in our desire to see things happen for our kids instead of living in this fractured community, each believing the other is already doing something about it.  Because they're not.  Not in any scale that can truly benefit us, or can truly get answers, anyway. 

That's really all I wanted to say today.  But in the meantime, I can say a little bit about the 4th of July.  Our 4th of July was really on the 5th, apart from the fact that I had to work on the 5th.  I left work a bit early to go home and prepare for the company 6 guests (this is one of perhaps only two occasions during the year that we ever even have anyone over!) for a cookout and the unparalleled view from our deck of the town fireworks display happening that night.  The fireworks are launched from a small island in the middle of a man-made lake a few blocks away, so there is certainly nothing lost by distance in either sight or sound.  Just ask Samantha - even with her headphones this year, and as excited as she was ahead of time to get to see the fireworks, it was still too much for her (her sensitivity enhanced by the late hour so far past her bedtime), and she retreated into the house on her own to watch TV instead.  I'm sure she'll outgrow it one day, and at least for now I was happy that she is old enough to go in and entertain herself while the 8 of us remained outside, enjoying ourselves.  We were relieved that everyone decided to leave immediately after the show, and all three of us went to bed at 10:30.  And all three of us had to be up at the butt-crack of dawn, Steve for work, Samantha and I for a drive to New Jersey to visit family.  Gotta keep moving, right?

Before the fireworks, getting juiced up on the red wine.  Nah, her cup's on the left...  ;-)
On another note, I got a new phone last week.  So far, I honestly can't say enough good things about it!  The more I play with it, the more I love all the features it boasts, and I'm learning something new every day.  Steve and I both renewed our service and got Motorola Droid Razr Maxx HDs.  We could have gotten them both for free by trading in our old Motorolas, but when we discovered that I had over 3,000 photos on my old phone that need to be removed manually (eep!!), we ate the trade-in on mine, swapped my over-used battery with Steve's barely-used one, and I plan on giving it to Samantha as soon as I can sort out the picture download thing.  I had no idea there was so much...  Whoops...  But how exciting that she'll have a mini-Android device to use!  She loves her tablet, but it's awkward to use to take photos, which she loves to do. 

I've also been pleasantly surprised that my new Droid Razr takes way better photos than I thought it would, and even has an HDR option!  If you're not familiar with HDR, it's a process in which multiple exposures are taken of each shot, near-simultaneously.  One image is as-is, one is slightly over-exposed, and one is slightly under-exposed.  This is very beneficial when you have a lot of back-lighting, and ordinarily the image in the foreground will often be poorly lit and under-exposed.  The HDR function helps to brighten the foreground, and gives your whole image an almost 3-D effect, with heightened colors and texture.  Below is an example.  Both images are completely un-edited, other than cropped for effect.  I kept the faces out of them because, frankly, they weren't very flattering photos, but you can still get the idea.  LOL  The first shot is without HDR.  The 2nd shot is with.  The difference is pretty amazing!

Without HDR

With HDR

So.  That's about it for now.  Just a quick update, trying to get back into the swing of blogging.  It's just so hard in the summer, when there's so much to do and schedules are so out-of-whack.  But it's par for the course, and the normality (hahaha) of Fall is just around the corner.  Not like I'm looking forward to that.  Summer's too fun.  Oh, and the NDSC (National Down Syndrome Congress) conference is next weekend!  I'm definitely looking forward to that - while I'm going solo and can actually take in some of the sessions and do more than I could last year, I will really, really miss my girl.  Rumor has it that next year's conference will be in Indianapolis, so I'll have to think about driving there and bringing her (and Steve, if he's willing!) with me.

Who else is going this year?  Who will I see there?  How will I find you?  It's so hard to identify people without their kids... 

Tuesday, July 9, 2013


I'm done.  I've had it.  It's just not worth the effort, the pain, the disappointment, the afterwards.  It's not worth the tears, the sorrys, the guilt.  I've tried again and again, each time with no greater measure of success than the last, and if I try really hard, I just *might* be able to go back through all of my blog posts over the years and perhaps find a post where things actually went well.  But I know for that one, there are at least a dozen of the others, detailing my determination not to do it again.  But I'm a glutton for punishment.  And yes, I feel guilty.

Some of you may laugh, think this is trite.  But I'm not laughing, and I know an army of you out there who are not laughing right along with me.  I'm trying to figure out how to make this sound like it's not a joke, because trust me, it's not. 

I'm done.  Done with torturing myself and Samantha with attendance at another child's birthday party.  It just never seems to end well.  If the party isn't at a playground or park, I think we'll just have to make our excuses and bow out.  She's completely overloaded.  I keep hoping it'll be different with each event, and, whether it's at someone's house, at a bouncy place (the bouncy part of the event is just fine, but she melts down when it's time to transition to the party room, and gets completely overwhelmed in the small room with loud voices, even when she's wearing headphones), or, as in last night's case, Chuck E. Cheese.  Her behavior is nothing like the happy-go-lucky child enjoying a party, but more like a stunned deer, caught in the headlights, not wanting to be anywhere near the other kids, refusing to move to do something fun, refusing to move to eat cake or pizza, even refusing to move if I tell her it's time to go home (oh, the meltdown!!!  You'd have thought she was being attacked!).  Gone is my happy, funny, loquacious, vibrant and engaging little girl, replaced by one even I don't recognize.

Child, what do you want

I honestly don't know.

But, for now, we'll take a break (not like she's been invited to more than a couple in the last year, but hell, no wonder!). 

And I'll hope that one day she'll be okay with it.  And will have fun.  And I will no longer feel guilty for forcing her to do something I should have learned a long time ago was not enjoyable to her.  I will no longer have to listen to her sweet, sniffly little voice from that beautiful, tragically tear-stained face, tell me she's sorry when it's me that was wrong for putting her in that situation.  I tell her again and again I'm so sorry she was so sad.  And last night do you know how she responded?

That's okay, Mommy, I still love you


Tuesday, July 2, 2013

BLOG HOP! What Mysteries do You Want to See Unraveled for the Future for Your Child with Down Syndrome?

Let's face it, our children are pretty mysterious.  Down syndrome is not a simple thing with simple answers, and every day parents, caregivers, educators and physicians struggle to figure out what to do.  What works for one may not work for another.  Therapies, lesson plans, behavior plans, medical interventions, treatments...everything. 

There are some pretty commonly-occurring factors in the lives of people with Down syndrome, some or all of which are important to each and every one of you.  I have my own list of issues and unknowns that I would love to see resolved within Samantha's lifetime, certainly sooner than later. 

For one, CHD (congenital heart defects).  Samantha was born with a hole in her heart, allowing oxygenated and un-oxygenated blood to mix.  It required surgery when she was 4 months old.  Approximately 50% of people with Down syndrome have some sort of heart defect.  It's a lovely product of that extra chromosome.  I can only count ourselves incredibly lucky and fortunate that she did not have some of the other health "products" such as lung issues, leukemia, thyroid issues (although I have heard it's a case of when she will develop a thyroid problem, not if...), and so, so many others, too numerous to list.  And, while Samantha's heart was fixed by the brilliant surgical team at CHOP, there are others that may be too complex to treat, or may need to be monitored closely for life, and children with Down syndrome are still being born with this condition that I would love to see gone one day.  For now, not enough is known about its cause other than it just happens.  Perhaps one day...

Another mystery my daughter's genetic biology holds that is so important to me is the link between Down syndrome and Alzheimer's disease.  That link is definitely there, but when, when, WHEN can this be fixed?  When can we find a cure?  I'm honestly shit-scared (pardon my French...) of this.  Both of my grandmothers had Alzheimer's when they died.  It's called the long goodbye, and with good reason.  It's heartbreaking and tragic, and I know this particular card is doubly-dealt to Samantha.  People with Down syndrome are likely to develop Alzheimer's at some point in their lives with much more frequency, generally much, much earlier than someone with a typical chromosomal make-up.  Find the mysterious link here, and perhaps a cure can be found for the entire human population as well.  Our children hold a key to a very big, very far-reaching mystery indeed.

Cognition is a hot-button in the Down syndrome community.  I will touch it very gently here.  I'm not saying I want to make my daughter different, or to take away Down syndrome - on the contrary!  I LOVE who she is, and Down syndrome is certainly a part of her.  But I know what kinds of struggles await her and others with Down syndrome.  Will she be able to effectively count change to make purchases?  Will she be able to remember and learn the tools necessary to live independently and safely?  Short-term memory is a big issue riding on the extra 21st.  If I can help alleviate some of those struggles by increasing her memory, by helping her to retain the tools she'll need to be a productive, healthy, independent person in society, then I'm all for it.

Many struggle with apraxia, gross motor development issues, vision and hearing loss, etc.  What would you like to see explained, researched, lessened?         

Today I am braving the unknown of another sort...I am creating my very first, my very own, my very experimental, Blog Hop!!  This is really a big deal for me, and I'm seriously hoping it doesn't fail to produce.  Then I guess I'd have to call it a Blog Hop Flop...har har har...  Anyway, my point is, this is a conversation that I really want to get started amongst bloggers, and amongst friends.  I have ulterior motives here, and would love to hear what you've got to say on this topic.  If you are not a blogger or you don't want to post on this topic, please, please leave me a comment with your thoughts below!    

We all have different points of view, different experiences, different dreams for our children and loved ones with Down syndrome, all of which shape our lives, our very existences.  And somewhere, sometime, someone will come along to help us answer our questions, to hear our pleas, and to bring results.  I know it.  But as a first step, I'd love for you all to bring it to the table by telling me what mysteries about your child you would like to see unraveled in the future. 

I'll run the Hop through Saturday, July 13th. 

Here's how:

In the Link Title/Blog Title field, please type the name of your blog and the name of the post, in this format:  Blog Name: Post Name.  In the link field, please paste the link to your post.  Click Enter.


And, somewhere in your post, please link back to this post and encourage others to join the Hop.  Share it on Facebook, in your groups, wherever.  Trust me, this is not something I will do often, but as my first attempt, please humor me and play along.  :-)