What We REALLY Want You To Know About Down Syndrome

Down Syndrome Awareness Month has come to an end. Most people are aware of Down syndrome, but the majority of people don't understand exactly what it is. So many people still view it as a tragedy or something to fear. What they can't allow themselves to see is that a person with Down syndrome does have differences - just like any other person - but they truly are like every other person on this planet...just with an extra chromosome!

I advocate for Liam and his peers through inclusion. I share about life with Down syndrome by simply sharing our family. Liam does what we do, goes where we go, and is very much an intricate part of our family unit and our community. Down syndrome is a part of him, just like his big blue eyes that are flecked with Brushfield spots or his joyful smile, but we refuse to let it define him.  

I spent the month of October advocating for Liam by sharing how he has impacted the lives of those around him. I have been advocating for over 7 years, but my ways have definitely changed. I used to share facts, but now I just let Liam and our experiences lead the way. I always share from my heart, so I will let Liam's siblings and grandparents tell you all about life with Down syndrome, before wrapping it up with a few things I really want you to know about Down syndrome.

Long Time No See

Hello, strangers! It has been a hot minute since the last time I really blogged about US. Back to school, a family vacation, a busy cheerleading schedule, a husband working from home, and juggling life and 5 kids takes up every single minute! 

I miss blogging so much, so I'm going to attempt to get back into it. I can't make promises anymore, though. This stage in our lives is just too busy right now, and my number one priority is spending time with my family, especially since my kids are growing up so fast. Guilt over not being able to put the time into writing has consumed me, but I refuse to let myself feel that way.

So here I am. I will write when I can. Sometimes I'll be able to blog more, while some weeks might be silent. I have so much to catch up on - Lily's birthday, Liam's birthday, our awesome beach vacation - as well as some new topics I want to tackle. For now, here's a look at life lately...kind of a reintroduction since we're pretty much strangers now!

Back To School & Big Changes

Over the past 6 weeks, life has been a whirlwind. The back to school season is always incredibly busy, but it's even more chaotic with four kids in four different schools AND a baby. I attempted to stay current with blogging, but failed miserably, and that's okay. I needed a break, and my one week break turned into three!

Life is finally calming down (a bit), so I figured it was time to get back to writing. I have so many updates to share, so I figured I would put them all in one post before moving on. Life has been very busy for my big family, and I haven't really had a moment to breathe!

Here's life in a nutshell over the past 6 weeks:

• My kids went back to school, and there were big changes this year!
• Lily became a cheerleader, and gave up dance for tumbling. She loves it!
• Coen is growing at an alarming rate. This last first year with my last bonus baby is going entirely too quickly.
• It's Down syndrome awareness month, and I haven't shared a single post. I do have a big one coming up!
• I started working out again - REALLY working out, and I'm finally getting my pre-baby body back. I'm also getting back into photography, and have SO many pictures to share.
• My parents had some health scares. My dad had a mini stroke, and my mom had a seizure. They are doing well now, but it was scary and stressful. 
• Life with 5 kids is just busy. Really busy.

Keep reading, and I'll fill you in on life lately!

Life Lately:The Pregnancy Edition

Happy November! Life Lately has been very busy and very exciting. If we're friends on Facebook or Instagram, you probably already heard the news...if not, all you have to do is read my previous post!

Although the busyness of life isn't going to slow down, I'm finally able to function better. I'm hoping to get back to a regular blogging schedule in this month. I missed writing and reading blogs so much while I was sick!

Here's a peek at life lately...

Down syndrome is JUST an extra chromosome

Did you know that October was Down syndrome Awareness Month? I honestly didn't even know it existed until Liam was diagnosed with Down syndrome when he was a few weeks old. Now every year, during the month of October, I share a fact about Down syndrome each day in the hopes of breaking the many misconceptions about Down syndrome. This year, however, I did something different. I opted to share all the ways that Liam is more alike than different! 

Surprisingly, not many people recognize that Liam has Down syndrome. They often notice that there is a delay of some sort, based on his small size and limited speech, but unless they have personal experience with Down syndrome, it can be easy to miss. But when they DO find out that he has Down syndrome, I notice that they start looking for all the ways that he is different rather than focusing on all the ways he is the SAME.

This year, I shared Liam each day exactly how we see him. Down syndrome IS a part of our lives, but it's also easy to forget. To us, Liam is a boy, just like any other. We often forget that he even has Down syndrome as we go through the usual busyness of life!

Down syndrome Blogs that are Inspirational, Real and Downright Beautiful

Four years ago, I found myself in a dark hospital room, lonely and grief-stricken. As my youngest son was whisked away for even more testing and my husband dealt with phone calls, I turned to the internet for help. A simple search for Down syndrome yielded both scary information and a list of Down syndrome blogs to read. 

I quickly immersed myself into reading blog post after blog post. Some were inspiring and brought me much needed relief, so I felt compelled to reach out to those bloggers and thank them for showing me light in a time of darkness, and ask them if they had any tips or information on where I should turn. Imagine my disappointment when I was met with crickets. 

Upon returning home with our baby who might have Down syndrome, I continued to research, and read these popular blog posts. I reached out yet again, and never received a reply from any of the bloggers. It was very disheartening! I later found out that it was the norm when it came to these Down syndrome bloggers, which made me think they weren't the best source of information about Down syndrome. How can you possibly relate to somebody who can't find time to support the Down syndrome community, when that is their main focus?

Dear Doctor: A Letter About Our Down Syndrome Diagnosis

Happy October! 

This month everyone is so excited about Fall, pumpkins and Halloween. October has another meaning for my family now. Today kicks off Down Syndrome Awareness Month! We have been celebrating Down syndrome and educating others during the month of October since our unexpected blessing was born three years ago! 

When Liam was born we had NO idea that he had Down syndrome. It was just one of those things that I knew the moment I looked into his eyes but we didn't know for certain until he was almost a month old. Every test and ultrasound during my pregnancy was completely normal and my risk factors were very low. I always forget the exact number but my chance of having a child with Down syndrome was something like 1 in 891. We were told our baby was textbook perfect so we never expected something like this could possibly happen!

Long story short he's an incredible little boy.  Down syndrome is nothing like how I imagined it would be and we quickly discovered that everything we thought we knew about this genetic condition was completely wrong!  Unfortunately that is very common. Most people we encounter have false facts and misconceptions about Down syndrome and part of my reality is living in a world where I have to justify my son's right to exist. 

To kick off Down Syndrome Awareness Month I'm sharing a Dear Doctor letter to the doctor who finally delivered the official diagnosis.  These amazing letters that showcase both the positive and negative diagnosis stories will be shared on the Down Syndrome Diagnosis Network's Facebook page during the month of October. 

Dear Doctor,

As I sat in the exam room cradling my tiny newborn you asked if we knew the results yet. It had been 5 days since the pediatrician at the hospital delivered his shocking suspicions in a manner that was not the best. The numbness had worn off by then but we were still in the dark about his diagnosis.  

You were absolutely certain that we would find out in the next few days but a week went by. And another week. And another. Still no answer. Every time we called the lab we were informed that they were having difficulty getting an accurate diagnosis. So we waited. 

We had already visited you 6 times for weight checks and my son was nearly a month old. You finally had enough. On the day we found out the results you and I stood side by side in front of the exam table. As you gently examined my son you insisted that we would have an answer by the end of the day. I could hear the anger in your voice. You said we had waited long enough and it was absolutely wrong to make us wait any longer. 

I'm certain you recognized the fact that I was a mom who just needed an answer. I just needed to know so we could move on with our lives in whichever direction that was supposed to be. I'm still not exactly sure why you did it but you stepped up to the plate when nobody else would. Perhaps it was the fact that you were a mom yourself. Perhaps it was the fact that you had a family member who had Down syndrome.  Either way, you were our advocate when we needed one the most.

As you opened the door to leave you promised that you were going to go straight to your office and call the lab. You smiled at me one last time then started to walk out. Something made you hesitate for a few seconds. You walked back in and asked, "Do YOU think Liam has Down syndrome?"

I looked you in the eye and replied, "Yes. I do." 

Your expression was completely neutral and you asked, "Why do you feel that way?"

I remember staring down at my precious boy and smiling as he gripped my finger. "Because a mother just knows." 

You smiled at me, nodded and walked out the door.

One hour later my phone rang.  I saw your number on the caller ID and took a deep breath. I knew, deep in my heart, that this was THE moment we had been waiting for.  I answered the phone and braced myself for impact.

"I have the results," you told me. "I don't like to make these phone calls but I feel more comfortable making this one because I know you already expected this and I know you are ready to hear the news. Liam does have Down syndrome." 

I didn't cry. I didn't feel my heart sink. I already dealt with those emotions. This was exactly what I expected to hear. I don't remember much more of what you said on the phone. I just remember letting out a sigh of relief over the fact that we finally knew and feeling thankful that we had someone on our side.

It has been 3 years since that moment. I am so much stronger and wiser than I was on the day you demanded those results. We have come so far yet life is still shockingly the same as it was before. We just have an unexpected blessing now who brings light, joy and love to each and every day. 

I just want to thank you for being there when nobody else would help us. I want to thank you for stepping up and demanding answers. I want to thank you for listening to me and caring about us. Most of all I want to thank you for caring about my son from the day you met him and always treating him like he matters.  

The moment you called with the results WAS the defining moment in our Down syndrome diagnosis. Those words sealed our fate. I am so thankful that you were the one to deliver the news.  I trusted you then and I trust you now. You are one of those doctors that EVERY doctor should strive to be. 

-A Downright Blessed Mom

Want to write a letter of your own? Anonymously let your doctor know how you think they did when they delivered the diagnosis by participating in DSDN’s Physician Feedback program: http://www.dsdiagnosisnetwork.org/#!feedback/c1gzt

If you recently received a Down syndrome diagnosis connect with the DSDN to receive information, connections and support: www.dsdiagnosisnetwork.org

People are often afraid to ask questions about Down syndrome but I welcome those questions and answer with the utmost honesty. If you have anything that you would like to ask please comment with your question!  

Let's Be Friends!

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NOTHING To Fear!

October is such a special month for our family!  It used to just be a month full of Fall activities and Halloween celebrations.  Now it includes celebrating Liam and educating our family and friends about Down syndrome.

Last month was Down Syndrome Awareness Month.  Each day I took a picture of Liam and shared a fact about Down syndrome.  I just wanted people to see exactly what Down syndrome is and show them that it really isn't something to fear!

Parenting ANY child has its ups and downs, but I just wanted to share Liam's beauty and shatter some misconceptions about Down syndrome. I shared these pictures on Instagram and Facebook, but I wanted to share them on my blog, too! 

DAY 1: Happy Down Syndrome Awareness Month! The number one thing I want people to know about Liam is that Down syndrome is only a tiny fraction of who he is. He is a happy, healthy, smart boy just like any other. We encourage everyone to look past Down syndrome and discover the individual. Liam is not a "Downs" child and we don't like to hear "I'm sorry" in regards to his diagnosis. We're not sorry! He is Liam and he is loved! 

DAY 2: In a recent study, nearly 90% of siblings indicated that they feel like they are better people because of their brother or sister with the developmental disability. I have no doubt that Liam changed Dylan, Lexie, and Lily's outlook on life. Their love for Liam is evident in every picture I take. Even more important, they truly care about everyone. Ability or race isn't even a factor in their thinking!

DAY 3: In 1983, the life expectancy for a person with Down syndrome was only 25. Today, the life expectancy is 60. I have no doubt that number will continue to rise!

DAY 4: Although it varies with each person, people who have Down syndrome tend to be small in stature. At just over 2 years old, Liam is 22 lbs and 32 inches. He is the size of an average 1 year old boy. The outfit he was wearing for this picture today was 6-9 months, but he typically wears 9-12 months. I love my tiny dude!

DAY 5:  Liam's gorgeous blue eyes have always captivated me! Those little white flecks are called Brushfield spots. These spots are normal for children, but are also a feature of Down syndrome, occurring in 35-78% of newborns with Down syndrome.

DAY 6:  The average age range to walk for a person with Down syndrome is 2-4. I was scared by that statistic and envisioned carrying my 4 year old around. Liam, however, started taking unassisted steps at 17 months, but didn't string more than a few steps together until 22 months. At that point, he took off and never stopped! 

DAY 7:  A characteristic of Down syndrome is small and/or low-set ears. Ear infections and hearing issues are common, and many kids with Down syndrome end up getting tubes. Thankfully, Liam's hearing is perfect and he has only had 2 ear infections. He does have tiny ear canals, but it doesn't cause any harm. It just makes examining his ears a bit tricky!

DAY 8: It is common for babies with Down syndrome to teethe late (12-24 months is the norm) and get their teeth in an unusual pattern. Teeth may be smaller than average, misshapen, and they may even be missing some teeth. Liam was 13 months old when he got his first two teeth (bottom middle, which is normal). His top 2 molars immediately followed. Liam now has 16 teeth, including all four 2-year molars, which usually come in last. Still waiting on all 4 canine/eye teeth! 

DAY 9:  (From the NDSS): There is a 50-100% incidence of obstructive sleep apnea in individuals with Down Syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3.5 - 4 years. Liam doesn't have any issues right now, but he will have a sleep study done between ages 3-4.

DAY 10: Many people underestimate the capabilities of people who have Down syndrome. What I've learned is this: Do not think in terms of can't. He can and he will.

DAY 11: The need for glasses is much more common in children with Down syndrome. Tear duct abnormalities and early age cataracts are also common issues. Liam has been under the care of an Opthamologist since he was 6 months old due to mild tear duct blockage. It cleared up on its own, but he gets a yearly eye exam to monitor his eyes. So far so good! 

DAY 12: While it's true that Liam is happy 99% of the time, it's important to remember that people who have Down syndrome experience emotions other than happiness, too! It's rare to see Liam upset, but when he gets hurt or angry, he puts his all into it!

DAY 13: A common characteristic of Down syndrome is small hands and feet. At age 2, Liam finally made it into a size 4 shoe. His tiny "starfish" hands are one of my favorite things about him!

DAY 14: A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all. - NDSS Liam is definitely small, but he doesn't have low muscle tone or the crease across his palm. What we hear the most is "But he doesn't have the eyes!" He does have "the" eyes. They just aren't noticeable until he smiles really big. When he does, I think that little slant only adds to their beauty! 

DAY 15: More than half of babies with #downsyndrome are born with a heart defect. Many of them will need heart surgery (and recover remarkably fast!). While we were in shock after hearing what the doctor suspected, we were dealt another blow. We were given the 5 out of 8 babies statistic and Liam was immediately taken away to get his heart checked. We weren't able to see him for hours. Thankfully, he only had a tiny hole that typically closes on its own (apparently it is common in newborns). It did close on its own, and at 9 months old, he was cleared by the cardiologist...hopefully forever!!!

DAY 16: Individuals with Down syndrome have a higher incidence of endocrine (thyroid, adrenal and pituitary glands) problems than the general population. No issues so far, but Liam had his thyroid checked at birth, 6 months, and 1 year. He's due for another thyroid test now, and will have one done yearly to make sure his thyroid continues to function properly. It's just a simple blood test, and they also do a CBC (Complete Blood Count).

DAY 17: Down syndrome is the most common genetic condition. 1 in every 691 babies in the United States is born with Down syndrome each year. That's approximately 6,000 babies. Liam was 1 in 691 and we adore him!

 

DAY 18: Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. (From NDSS) In most cases, it's just chance, and it occurs in people of all races and economic levels.

DAY 19: Many people assume that only older mothers have children with Down syndrome. That's absolutely not true! The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age. When Liam was conceived, I was 32. The average age of a mother for a first birth is 30.

DAY 20: Some people believe Down syndrome is hereditary. In most cases, it is not. Translocation, a type of Down syndrome that accounts for 3 to 4% of all cases, is the only type of Down syndrome known to have a hereditary component. Of those, one third (or 1% of all cases of Down syndrome) are hereditary. Liam does not have Translocation. His case was just chance.

DAY 21: FACT: Babies and toddlers who have Down syndrome give the best hugs EVER. Seriously. Nothing compares. It isn't just a lower tone issue that causes them to melt into your arms. It's so much more. When I pick Liam up, he locks eyes with mine, smiles like I'm the best person in the world, melts into my arms, wraps his arms around my neck, presses his cheek against mine, and just when I think it couldn't possibly get any better, he starts patting my back. The amount of love in that single embrace is immeasurable. It takes my breath away every single time.

DAY 22: Many babies and toddler who have Down syndrome have feeding issues. It's often due to low muscle tone or difficulty coordinating tongue and jaw movement. Liam lost a lot of weight as a newborn. It was initially thought to be low muscle tone causing him to not feed properly, and at 2 months, his amazing OT came into our lives. She was previously on the feeding team at the hospital, so feeding issues was her specialty. She came to the conclusion that his weight loss/slow weight gain was caused by him burning off more calories than he consumed, because he was nursing properly. (He still gains very slowly.) Due to her background, she insisted that Liam follow a typical feeding schedule. Because of her, Liam was eating solids like a champ at 5.5 months, drinking from a straw cup by 8 months, eating finger foods at 9 months, and using utensils at 12 months. This kid loves his food! Of course, at age 2, the pickiness is starting to set in, and he really enjoys feeding his food to my parent's dogs, and throwing his cup and utensils!

DAY 23: Because of abnormalities in their immune systems, those with Down syndrome are much more at risk of infectious diseases, such as pneumonia. When Liam was born, we were warned that he would most likely get sick every 4-6 weeks, and get frequent ear infections. Thankfully, Liam proved them wrong! He has only had 2 ear infections, and only gets sick 2-3 times a year. The only difference is, he usually has one illness a year that lands him in the ER and requires at home breathing treatments. The last time he was sick was at the beginning of May...and that was only because he got cellulitis from an exam in the ER after a nose injury! Unfortunately, he woke up with my cold yesterday (I told him not to steal my drinks!), but he's still smiling!

DAY 24: Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. Some people consider that extra chromosome an imperfection, but I consider it an enhancement. Take today for example. We got stuck in the rain in the pumpkin patch . He was the only one smiling and laughing!

DAY 25: Tongue protrusion is common in babies and toddlers who have Down syndrome. This can be improved by building the muscles in the mouth through the use of a straw cup and regular speech therapy.

DAY 26: There are 3 types of Down syndrome: trisomy 21, translocation, and mosaicism. It truly doesn't matter what type. They are all blessed with a little extra and they are all downright awesome!

 

DAY 27: People do not "suffer" from Down syndrome. Liam is not suffering, and we are not suffering. And for those who doubt us, I'd love to invite you over to spend a day with Liam. The only thing we suffer from is lots of smiles and fits of laughter!

DAY 28: When people use the word "retarded" they hurt an entire community of families. Even if the usage was harmless and it was unintentional, it's still wrong. There are over a million words in the English language. I'm certain there's a word more suitable for what is trying to be said.

DAY 29: Down syndrome can be diagnosed prenatally through chorionic villus sampling (CVS) and amniocentesis. These tests are performed if blood work indicates a strong chance of Down syndrome or if Down syndrome markers are visible during an ultrasound. If a baby is diagnosed after he/she is born, they perform a karyotype (a blood sample is taken and analyzed). After Liam was born, it took us over 2 weeks to receive his test results. We were told we would know within 48 hours. Every day I called, and every day we were told that they were having a very difficult time getting accurate results. Grant and I began to worry that it was something worse. After 2 weeks of not knowing, Liam's pediatrician was livid. She called DURING an appointment and demanded a yes or no result within the hour. One hour later, she called me back to confirm his diagnosis. We were actually relieved it was JUST Down syndrome. I have no idea why they had so much trouble getting results. I guess he was just trying to puzzle everyone from the very beginning!

DAY 30: Presume Competence.  

DAY 31:  Thank you for reading all these facts for Down Syndrome Awareness Month and thank you for all the love and support! Liam's genetic makeup may not be "textbook perfect" but he has as much of a right to be here as you and I do. He has strengths, talents, and gifts to give the world. ❤
He is so much more than his Down syndrome diagnosis. He has blessed our family so much and we are so proud of him. He is just plain awesome. 

 

And that, my friends, is life with Down syndrome!  It isn't nearly as scary as it's made out to be! Liam is an incredible kid who has touched our lives (and many others) in so many ways.  He is a blessing and we are HONORED to be his family!

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HELLO, Friday!

Happy Friday!



We have a really busy weekend ahead of us, but it's going to be fun!  I hope you do, too!

It's hard to believe, but we are officially halfway through Down Syndrome Awareness Month!  I've been sharing daily facts and pictures of Liam on Instagram and Facebook, and I'll recap at the end of the month. 

For now, you should check out my interview with Lauren from Denver Metro Moms Blog.You can read it HERE! Thank you, Lauren, for helping spread awareness (AKA The TRUTH about Down syndrome)!

Have a great weekend, everyone!

Dashing for Down Syndrome

Three years ago, we were a new family embarking on a Down syndrome journey.

At the time, I had no idea where this path would lead.  I still felt slightly shell-shocked, and hadn't met anyone in the Down syndrome community in person.

We were encouraged to attend the Dash for Down Syndrome, which benefited the Down Syndrome Association of Pittsburgh. We were hesitant about going, but at the very last minute, we decided to give it a shot.  I am SO glad we stepped out of our comfort zone and attended.

From the moment we arrived, we were welcomed by other parents who were on a similar journey.  Before we even made it up to the tent to register, a woman walked up to us, introduced herself, gave us a hug, and pointed out her own son.  We met so many people that day and my husband and I found ourselves holding back tears on several different occasions.

The Down syndrome community is simply amazing. When we're all together as a group, there's an overwhelming feeling of happiness, love, acceptance, and positivity. I've never experienced anything else like it!

Although we've attended many playdates and events with our local Down syndrome community, the Dash for Down Syndrome is the biggest event of the year.  We attend every year, and each year, our team grows!

On Saturday, we headed into Pittsburgh to attend the Dash for Down Syndrome at the Highmark Stadium. It was our third year, and we were so thankful Grant's mom, two of my dad's cousins, and our "framily" could join us! The SuperLiam League is awesome!

We had an afternoon full of family, friends, fun, and celebrating our loved ones with Down syndrome!

Liam spotted himself on the big screen...

...and didn't hesitate to stop, drop, and #downwarddude!

The Dash for Down Syndrome is a great family event.  There are bounce houses, games, train rides, balloon artists, and snacks. The mascots for the Pirates and the Steelers are always there. The kids always have so much fun!

Finally, it was time for the walk!  This year's walk was my favorite so far.  We walked along the river, into station square, around the fountain, and back along the river.  The view of the city was every bit as beautiful as it was in the stadium.

I always get so choked up while we walk.  There's a line of people as far as you can see in front of you and as far as you can see behind you.  It's a very powerful and moving experience to be part of a group of people who all come together for one cause.

Just for the record, even superheroes need to take breaks sometimes.

When we returned to the stadium, our friends and family members began to leave.  Liam woke up and explored the nearly empty field.

Don't worry, Pittsburgh.  Liam has your back!

The Dash for Down Syndrome is the Down Syndrome Association of Pittsburgh's biggest fundraising event of the year.  This year, we all raised over $90,000.  That money directly benefits Liam and his peers by funding local programs that help them! If you would like to donate to this great cause, you can still do so HERE.

A huge thank you to The SuperLiam League for all the love, support, and donations. We love you all!

It was another great year at the Dash for Down Syndrome!  It has quickly become one of our favorite events of the year!!!

If you are new to the Down syndrome community, I highly encourage you to step out of your comfort zone, and attend an event.  I promise you won't regret it.  Community and support is one of the most important aspects on this journey!

Do you personally know someone who has Down syndrome? 

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