Monday, October 31, 2011

We did it.

31 posts in 31 days. Done.  If you are still reading, thank you.

It is my hope that this month I have spread a little awareness by dispelling some of the myths about Down syndrome, as well as illustrating how "normal" life is raising a child with an extra chromosome.

We are incredibly blessed to have this little girl in our lives, and I love sharing her with you.


It is hard to believe tomorrow is the first of November. I hate to say it, but soon snow will be flying around here, and the holidays will be upon us. I will no longer be blogging daily, however, with so many fun things on the horizon, be sure to check back for Charlotte updates.

Sunday, October 30, 2011

Halloween Fun

What a weekend! We had a busy, fun filled couple days. The kids are wiped, as am I, and I am hoping we all make it out of bed for school tomorrow.

The kids both had school parties, as well as a couple opportunities for trick-or-treating. Today, we had lots of friends and family over for a pizza party and some Halloween fun. I need a weekend to recover from our weekend!




Sophie the banana split (minus the banana hat, she hated that part of the costume)


Happy Halloween everyone!

Saturday, October 29, 2011

The drawer.

I quickly learned that the bottom drawer of the desk in our kitchen is Charlotte's drawer. She is obsessed with this one particular drawer, even though none of the other cabinets or drawers in our kitchen are child-proofed. After repeatedly taking her away from the drawer and putting everything back in it after she had taken out a million times, we cleaned it out and filled it with her toys.

Sam also loves the drawer. It is fun to watch the two of them play together, they have already developed quite a fun little friendship.



Be sure to check back tomorrow for a fun Halloween post!

Friday, October 28, 2011

Do you have two minutes?

Take just a couple minutes and watch the video clip below. Very powerful. I shared this through another mom of a kiddo w/ds on Facebook; I apologize for the redundancy if you watched it there.

Direct link if you would like to watch it a tad bigger:

Thursday, October 27, 2011

Good Buddies

The month Charlotte was born, three of my good friends also had babies. We see each of them often, and it is fun to watch Charlotte interact with her typical peers. It reaffirms what I already know; they are more alike than different. I look forward to watching her relationships with her buddies grow as they get older.

Playing House with Harper (She is 8 days younger than Charlotte)

Swimming with Max (He is 6 days older than Charlotte)

Playing trains with Quinn (She is 2 weeks younger than Charlotte)

Wednesday, October 26, 2011

Clap your hands.

One of the activities the PT suggested for this week was to have Charlotte stand with her back against a wall for extended periods of time in order to work on building her core strength. However, in order to motivate her to stand for longer amounts of time, we have to distract her by reading books, or in this case, by singing songs.

Tuesday, October 25, 2011

31 for 21 Factoid: Part IV

When Charlotte was diagnosed with Down syndrome, my thoughts immediately turned to everything she wouldn't be able to do. All the dreams new parents have for their children seemed to fly out the window for me. Fortunately, it didn't take long for me to realize, I could close that window.

Because, people with Down syndrome do...

...learn to ride bikes,

...learn to read,

...graduate high school, a car,

...go to college,

...get married, independently

...and so many more.

The only thing that needed to change, was for me to realize it isn't my hopes and dreams that are important, it is what Charlotte wants.

Dream big, baby girl. You can do it.


***Check out this blog post for a great list of what people with Down syndrome can do, and videos/news articles to go along with each story (read the comments as well, more great links there!). Very inspiring!

Monday, October 24, 2011

Say what?

Charlotte's newest trick? Talking with her hands. I think it is an inherited trait because I tend to talk with my hands a lot. It is pretty cute, tons of baby babble accompanied by wildly waving little hands. I guess she is trying to figure out another way to get her point across in this crazy house!

(she is having a conversation with Missy after school today in these pics...)


Saturday, October 22, 2011

What do I think?

Yesterday, I made this post about the new Down syndrome blood test available to expectant moms. I'm not going to lie, I have been avoiding this topic. I have read a lot about it the past few months, and frankly it isn't easy for me to think about. When reading articles in the news about the subject, I tend to read the comments left by readers as well, which in turn ends up upsetting me even further. As I have wrote before, I tend to sit on my little cloud of optimism about how far the acceptance of people with Down syndrome has come, but when I read about "the eradication Down syndrome" with this blood test it makes my stomach turn. Frankly, you don't eradicate something by terminating pregnancies.

We did not have a prenatal diagnosis with Charlotte. We found out 24 hours after she was born about the Down syndrome, and 5 days later about her heart defect. During my pregnancy I declined the quad screen, a test designed to give your risks of certain types of chromosomal issues. I didn't have this test for either of my other pregnancies, and felt no need to for this one as well. My reasoning? The quad screen has very high false positive rates and does not give definite answers. I also felt at age 29, my risk was minimal, and if our child had a chromosomal issue, it wouldn't make a difference, and we would chose to keep the baby regardless.

The days following Charlotte's birth, to put it bluntly, sucked. If I could go back and "re-do" those days, I would take away all the sadness and grief, and only feel joy as I held my newborn baby. However, as most everyone who has received a Down syndrome diagnosis will tell you, one needs time to grieve. I have yet to meet a pregnant woman who says "I hope I have a child with Down syndrome!" It was a hard diagnosis to swallow, but I often reminded myself it could have been worse.

After the grief, there is joy. Joy like I have never experienced before. Everyday when I walk into Charlotte's room to get her up from her nap, I am overcome with feelings unlike anything I have experienced before. When I sit back and watch Charlotte play with her brother or sister, there is more joy. Since Charlotte's birth, I feel like I have become a better mother. I am more patient, I take more time to play with my children or read them an extra book, even when I should be catching up on laundry. Why the change? Because I am more aware of what I have and how grateful I am for it.

I realize this post has taken an odd path, but my hope is, that I will touch someone, even just one person facing a T21 prenatal diagnosis. My wish is for them to know, it will be okay. Your child may face extra challenges, but I truly believe that when raising a child with special needs the lows may be lower, but the highs are higher...much higher.

If I could go back, would I want to know prenatally that Charlotte had Down syndrome? At this point, no. Yes, those first few days after her birth wouldn't have sucked so bad, but had I known, I probably would have been crazy with worry during my pregnancy. Everything happens for a reason, and it is only afterwards that we sometimes know why.

*For further blog reading on this subject, please visit this post on the blog, "Pudge and Biggs." She tells it like it is, and I whole heartily agree with what she writes.

Friday, October 21, 2011

Hot Topic

Down syndrome has been in the news recently. A few days ago, a simple blood test was released that claims to be able to detect T21 in a fetus as early as 10 weeks gestation with a high percentage of accuracy. The Down syndrome community has been preparing for this for months, as the fear is an even higher termination rate than the current 90%.

Below is the letter sent by the president of WI Upside Down to all of the members. She does a great job of linking the many different sources, studies, and external informative websites. Check it out, and I'll be back tomorrow to give my personal perspective on the issue.

Dear Wisconsin Upside Down Members, 

As you may have heard, there has been a major development for the Down syndrome community in the last 48 hours. On Monday, October 17th a San Diego-based biotechnology company called Sequenom released a non-invasive pre-natal test for Trisomy 21. It is now available in 20 cities. At least two other companies are preparing to roll out similar tests in the next two years.

The significance of this news cannot be overstated for the Down syndrome community. Amniocentesis and chorionic villus sampling, the current standards for detecting chromosomal conditions during pregnancy, involve risks to the fetus, which many expectant parents choose not to take. The result is that the vast majority of Down syndrome diagnoses happen after the child is born.

However, the emergence of this new simple blood test, which can be administered in the first trimester, means that a prenatal diagnosis will almost certainly become the norm in the years ahead. The promise of earlier, largely accurate detection at no risk to the pregnancy will no doubt be welcomed by expectant parents as positive advancements.

The Dilemma
As a New York Times article on the subject notes, the new tests raise a number of troubling ethical issues.  Dr. Brian G. Skotko points out in the story that these tests could encourage more people to end their pregnancies, causing a decline in the numbers of people with Down syndrome and leading to diminished support for all people with Down syndrome.

Behind this concern is the issue of whether expectant parents, told that their child is likely to have Down syndrome, and facing a daunting decision, have all the necessary information to make the best choice for their family.

In the case of the Sequenom test, dubbed MaterniT21, it is essential that parents are clear on the limitations. First, the test only detects trisomy 21, not other forms of Down syndrome, such as translocation or mosaic Down syndrome. A "negative" result could still mean that the fetus has trisomy 18, trisomy 13, or other genetic conditions, which would have been picked up by an amniocentesis or CVS. Second, the Sequenom test for trisomy 21, while extremely accurate, is not foolproof. According to a clinical study, a "positive" result will be wrong 1.8 percent of the time, a "negative" result .2 percent.

Even more importantly is the question of whether expectant parents truly understand what it means to have a child with Down syndrome. With early, accurate detection becoming commonplace, will expectant parents reflexively choose not to have a baby with Down syndrome without fully understanding the joy and wonder that people with Down syndrome offer?

The Truth
If the answer is yes to the question above, it misses something central about the Down syndrome experience that we in the Down syndrome community know, but that the general public does not yet grasp. Namely, that for all the challenges of living with Down syndrome, parents, siblings, even people with Down syndrome overwhelmingly report that they are enriched by the experience.

Until a few weeks ago, this was an unproven truth. However, earlier this month, Dr. Skotko, along with Susan Levine of Family Resource Associates, published a study in the October issue of the American Journal of Medical Genetics that backed it up with hard numbers. According to the study:
  • 79 percent of parents or guardians felt their outlook on life was more positive because of their child. Only 5 percent felt embarrassed by their child.
  • 94 percent of siblings age 9 and older expressed feelings of pride about their sibling. 88 percent said they felt they were better people because of their sibling with Down syndrome. Only 4 percent said they would "trade their sibling in" for another.
  • 99 percent of people with Down syndrome said they were happy with their lives. 97 percent liked who they are and 96 percent liked how they look. Only 4 percent expressed sadness about their life.  
When talking about life with Down syndrome, it is also critical to note the medical advances in recent decades that have led to a dramatic increase in life expectancy. Today, people with Down syndrome live, on average, to 60 years old, with many living into their seventies.  

The Response
Fortunately, the Wisconsin Upside Down is perfectly positioned to advocate on behalf of all people with Down syndrome, their families and loved ones in these complex times. With years of experience behind us - and a wealth of connections and expertise that we have built over this time - we are uniquely equipped to serve current and future families as these and other technological developments unfold.

Given the changes the new tests will engender, more expectant parents than ever will need support and guidance to make informed decisions. Wisconsin Upside Down is prepared to meet these families' needs on a number of levels through both longstanding, proven programs and bold new initiatives.

On a federal level, Wisconsin Upside Down has joined forces with Down syndrome leaders across the country in anticipation of these new noninvasive tests hitting the market. We have sought to reach consensus on the difficult issues the tests gives rise to, and we have collectively lobbied our leaders on Capitol Hill.  

Just last week, our national affiliate, the National Down Syndrome Society, released a position statement on prenatal tests, which Wisconsin Upside Down board of directors has endorsed. Among other things, the statement declares that for a test to be called a "Down syndrome test," all forms of Down syndrome must be evaluated. Also, the decision whether to have a test performed must be that of the pregnant woman and her significant other, and the decision should remain strictly confidential.  

In closing, we recognize the emotional resonance this issue holds for our friends and families in the Down syndrome community. We fully understand the mix of emotions this news may give rise to, even as the full implications for our members remain, to some degree, unknown. That said, we hope you do know that Wisconsin Upside Down will continue to be here to help in whatever way possible. We are more committed than ever to ensuring that all individuals in Wisconsin with Down syndrome are valued, included, and given every opportunity to pursue fulfilling lives.

Robbin Thomas Lyons
Wisconsin Upside Down

Thursday, October 20, 2011

Wordless Thursday?

Disclaimer: In the blogging community, "Wordless Wednesday" is a known phrase (mainly for the alliteration). However, for me, it makes more sense to have a "Wordless Thursday" because I work Thursday nights and don't have a whole lot of time to blog. If you can come up with a better title for my Thursday 'picture only' posts, please let me know!

"Where's my chair guys?"

Wednesday, October 19, 2011


I have been working on revamping the blog and adding some new pages. One of the pages I have planned, "Who's Who on Charlotte's Web," is going to have links and explanations of everyone I refer to in my entries. I have recently realized the number of readers who do not know us personally is growing, so I figured it would be helpful.

In trying to do this, it occurred to me that I have never created a post solely about Missy. I write about her and her children in many of my entries, but many readers are probably thinking, who the heck is this person?!

So, who is Missy?!?

Technically, we are not related. Well, at least by blood. However, we have know each other most of our lives, and been "BFF's" for over 20 years. Missy has two brothers, I have three. Both of us are lacking a sister, and we have filled that void for each other. We spent most weekend nights in high school at each others houses and our days working at my parents' cafe together.

We went to the same college, lived together for 4 years (which everyone warned us against; they said we would never be friends again if we lived together), and both majored in education. Missy graduated with her special ed degree, something she always has and always will have a passion for.


After college, we both found teaching jobs. Soon after that we stood up in each others' weddings, bought houses and puppies.


Katherine and Alec were born 3 months apart, though at Alec's birth they were pretty much the same size. Everyone thought it was funny that Missy had the 9.5 pound baby while I had a little peanut.



I consider myself very, very lucky. I have lot of friends, but no one is my life comes close to what Mis means to me and my family. Just like Katie, I struggle with what to call Missy. "Best friend" sounds very elementary school-ish and really doesn't come close to what she is. At times I have called her my sister, though that can be confusing as well (like when one of the preschool moms asked Chris if I was his sister or Missy's...he was so confused). So for now, she is just "my Missy."

(This was back before we realized what a good baby carrier was; neither of us would be caught using a bjorn anymore!!)





Missy tends to refer to Will as her middle son.

Missy was at our house watching the older kids the night we came home from the hospital with Charlotte. It was a couple hours after we had been told about the Down syndrome, and I was a mess. I remember sitting and pointing out every feature that said to "Down syndrome" and trying to get Missy's opinion. We didn't have a definite diagnosis at this point, even though I knew. Missy sat and stared at Charlotte and just kept saying over and over again, "she is perfect." She was right.



Missy teaches middle school special ed, and as I have said before, she is a fantastic teacher. She truly has a passion for what she does. Even before Charlotte's birth, Missy had taught me so much about disability. After her birth, I realized what an huge impact she was going to have on Charlotte's life.


Within days of Charlotte's diagnosis, Missy had already decided to organize our team for the Down syndrome awareness walk. She came up with the name, "Charlotte's Web," to represent the large group of supporters that surround my little girl.

Our move brought us pretty dang close to Missy and her family. We live a quick 6-minutes from each other. We see each other multiple times during the week, our kids are great buddies and so are our husbands.

I gotta tell you, everyone needs a Missy in their life.


Tuesday, October 18, 2011

31 for 21 Factoid: Part III

I took this from the National Down Syndrome Society Website:

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior. 

BIG pet peeve of mine is when someone assumes all people with Down syndrome are happy all the time. Though most mean well, by making this assumption, I, as a parent of a child with DS,  hear "my child isn't capable of feeling a full range of emotions." 

Just. Not. True. 

One thing I know for sure, Charlotte has shown me during the past 16 months that she is not happy all the time. Yes, she is a very good baby. Yes, she is very laid back. Yes, she is usually smiley and very social. However, so was Will and he only has 46 chromosomes. They both have/had their moments of anger. They are both human and both capable of feeling a full range of emotions. In this case, chromosome count doesn't matter. 


Apparently an extra chromosome doesn't stop Charlotte from finding trouble either. Rearranging Tupperware is so much more fun than playing with her own toys.


Monday, October 17, 2011


Katherine is all-girl, lately I am thinking that Charlotte may take a different path and be more of a tomboy. She much prefers Will's toys to just about anything else. Her new favorite? The batcave. She and Will fight over who gets to be the Joker.


Sunday, October 16, 2011

It was a beautiful day.

Today, over 70 of our closest family and friends joined us to celebrate Charlotte and those who share her extra chromosome. Many others who could not make it today donated to our team in support of Down syndrome awareness and acceptance. Our team, "Charlotte's Web" raised over $2300 and won the "Top Awareness" award at today's walk. Amazing.


To say that we are grateful is an understatement. There really are no words to describe the amount of support we are surrounded by. Since Charlotte's birth, I have realized what selfless, amazing people we are proud to call friends and family. I hope every single one of them realizes the impact they have made on our lives.

Special thanks:

* Missy, who has been and always will be one of the most important people in my life. Thank you for being our team lead, for giving up your time to organize and fund raise, and for never seeing someone for their disability, but rather the person they truly are.

*The Warnes family for raising over $500 just as a family! You guys are amazingly selfless and giving people who are teaching your children a very, very important lesson. Thank you.

*The many, many people who donated even though you couldn't be there today. People I haven't seen since high school, people who live on the hundreds of miles away, people I have never met. Thank you for making a difference.

*Sally, our photographer. I think you may have found a summer job. Your pictures rock.


It was a beautiful day. 

To the members of Charlotte's web: Our "Top Awareness" award came with a large amount of Pizza Hut gift cards. We thought this would be a good opportunity to have everyone over for a pizza party, watch your email for an evite!

Here is the direct link to Youtube for the slide show in case you want to watch it a bit larger:

Saturday, October 15, 2011

Quick one tonight.

Mike and I are laptop junkies. We both spend the majority of our nights after the kids go to bed reading the latest news, message boards, blogs, etc. Some nights we need a technology freeze. Tonight is one of them, so this is going to be quick. Below are a few pics from the pumpkin farm today. Despite the crazy wind, the kids had a good time.

See a lot of you at the walk tomorrow! Gotta run, there is a glass of wine with my name on it!








Friday, October 14, 2011

Buddy Walk 2011

Sunday is this year's Buddy Walk. If you haven't seen my previous posts on the walk, check out "My Wish" for the background info.

I have said it before, and will say it again, we feel incredibly blessed to have such a huge group of people walking with us. To me, it shows that we are surrounded by people who not only support and care for us, but also fully accept our daughter for who she is. Our team has now raised over $2000, and is made up of over 70 people. Wowza!

Some may ask, what exactly are we raising money for? Good question. Unlike fundraisers for things like Breast Cancer or Autism, we are not funding research to find a cure for Down syndrome. Down syndrome is something that can not be cured. The money raised goes to fund the many programs sponsored by Wisconsin Upside Down. Programs that increase awareness and acceptance of Down syndrome, as well as many social activities for individuals with Ds and their families. Check out their website for more about what they do.

We are looking forward to Sunday! Praying for nice weather.

To those joining us: Missy is going to send out an email tomorrow with all the pertinent info, watch for it, and thank you, thank you! See you Sunday!

Thursday, October 13, 2011

One Year Ago. Today.

One year ago today, I kissed Katherine's forehead and whispered happy birthday in her ear long before she woke up for the day.

One year ago today, I kissed Charlotte, whispered that I loved her, and handed her off to the anesthesiologist to take her to the operating room.


One year ago today, I wasn't able to make Katherine the traditional birthday chocolate-chip pancake breakfast (good thing Missy did this for her!).

One year ago today, I wasn't able to take my daughter to preschool with her cupcakes for her classmates.

One year ago today, an amazing surgeon and his team repaired Charlotte's heart.

One year ago today, I wrestled with a huge amount of worry and mommy guilt as my youngest underwent major heart surgery, while my oldest was without her mom and dad on her 5th birthday.

One year ago today, Charlotte came out of the operating room doing well, and off the vent.


One year ago today, Missy brought Katherine and Will to the hospital for an impromptu birthday dinner in the hospital cafeteria, while their little sister was upstairs with grandparents resting after surgery.




Today, I woke Katherine up to dress for school with a rousing round of "Happy Birthday."

Today, I walked into Charlotte's room and was greeted with outstretched arms, a big smile, and a whole string of baby babble.


Today, I made the kids chocolate-chip pancakes.


Today, I watched as Katherine jumped for joy when she opened her gifts and found she got exactly what she had asked for (a "fur real dog"....most annoying little thing ever!)


Today, I dropped Katherine off at school with two dozen cupcakes topped with pink frosting and pink sprinkles.

Today, I watched Charlotte cruise, climb, stand, and crawl at PT....all while thinking about how far she has come in a year.

Today, we went to Texas Roadhouse for dinner (K's choice of course...she loves the rolls?!?). The Neuharths joined us, making for a perfect 6th birthday celebration.



Today, I watched in delight as my eldest fed my youngest bites of ice cream from her dish.


Today, my oldest daughter turned six. Happy birthday Katherine!

(holding her sister's heart balloon!)

Today, my youngest daughter celebrated a year of having a healthy heart. Happy heart-day Charlotte!

(her scar is barely visible these days...)

October 13th will always be about my girls. I look forward to many, many more.

**edited to add a video from last night's festivities (I apologize for the poor quality, it was taken with my phone).