Downright Blessed - Meagan and Asher

How a Down syndrome diagnosis is received varies from person to person. Some people find out prenatally, some people find out at birth and some people don't find out until their baby is much older. The feeling upon hearing the news, however, is often very much the same.

I met Meagan through the Down Syndrome Diagnosis Network. Most of you know that we didn't officially find out that Liam had Down syndrome until he was almost 3 weeks old. It was suspected at birth, but the doctors were divided. It was a LONG wait for the results. Meagan's diagnosis story is a bit different. Meagan found out that her beautiful son, Asher, had Down syndrome prenatally. Read on to hear Meagan's diagnosis story!

I will never forget the day I got the news that our son Asher would be born with Down Syndrome. My OBGYN called and told me my test results came back abnormal for Down Syndrome and that we would need to meet with a genetic counselor as soon as possible. I remember feeling every emotion possible in the weeks leading up to the meeting. One minute I was heartbroken and depressed and the next I was angered and frustrated. I never really knew what to feel, because I had no idea what it all meant.

At the meeting, the genetic counselor asked questions about our family history and gave us information about my results. She told us about the risk Asher and I could face while I was pregnant. She told us about the health issues he could be born with or have to deal with as he grows up. She even asked if I still wanted to proceed with the pregnancy?! What she didn’t tell us was how much joy and happiness Asher would bring us. Or how much closer our family would be because of him.

Down Syndrome, also known as Trisomy 21, is an extra copy of the 21st chromosome. This extra genetic material manifests itself in a number of ways, most notably intellectual and developmental delays, and recognizable physical characteristics. What does that mean for our Asher? It means he has Down Syndrome, but he doesn’t have every single characteristic of Down Syndrome. He has his own physical features, likes and dislikes, strengths and weaknesses, and traits that make him unique. It also means he might need a little extra time and attention to hit his milestones as he grows, but nothing will stop him!

Asher is an individual, just like everyone else. Down Syndrome is only a piece of who he is. We will not write his future for him and neither will society. Although Down Syndrome is apart of Asher, it does not define him. He is so much more and we want to share his journey with the world!

I wanted to share some pictures for those of you who haven’t met my son from birth up until recently. I cannot believe he is almost the big O-N-E! Everyone, please meet Asher!

This post originally appeared on My Atlanta Moms Club, where Meagan is a contributor. You can find Meagan posting about life with Asher on his Facebook fan page, on Twitter and on Instagram.

Thank you so much for sharing your story, Meagan! If you would like to contribute to the Downright Blessed: Life with Down Syndrome series, please send an email to lexieloolilyboodylantoo@yahoo.com.

Downright Blessed: Don't Be Sorry

When you find out that you're going to have a baby, you immediately picture a perfect bundle of joy.  Every parent wants and expects a perfect, healthy baby. But for some parents, that bundle of joy isn't quite what they expected.

It can be shocking or awkward when you find out that a family member or a friend's baby has a birth defect or genetic condition.  Saying "I'm sorry" is the natural instinct, but it really isn't the right thing to say. A simple "Congratulations! He/She is beautiful!" or even a "What can I do for you?" is a much better option!

Cathleen, from The Small Family Chronicles, is here to explain why you shouldn't feel sorry!

 

Last night I went to our Down syndrome organization’s annual charity gala. It was a fabulous night filled with fabulous people. At one point, though, I almost had to step outside for a moment. To introduce our Fund a Need portion of the event, a mother gave a speech that nearly brought me to tears (probably along with the rest of the audience).

This year’s Fund a Need was our New Parent Support program. This is exactly what it sounds like: Our director of new parent support, Nancy, reaches out to new families who either have welcomed a child with Down syndrome or are expecting a baby with Down syndrome. She visits them in the hospital, at their home, or at our office—their choice. She invites them to attend our Early Connections support group so they can meet other families with babies and young children with Down syndrome. She throws them a lifeline and safety net at a very tender time. I remember that time myself, very well. Nancy wasn’t on board then—Martha, the founder of the Down Syndrome Connection, was. I talked to her on the phone, and she was so supportive and understanding and encouraging. And then I came into the office with a tiny newborn Sam in person, and I immediately felt like I had found a second home.

And somehow, that tenderness doesn’t go away. That feeling of being so scared…but then so accepted and supported, too. It’s a whole range of emotions wrapped up in one ball—some good, some scary, but all powerful.

So when the young mother of an infant girl with Down syndrome got up and spoke about the New Parent Support program, which she reached out to when she got a prenatal diagnosis, it tugged at my heart. And when she said, with her voice breaking, that the doctor who called to deliver the prenatal test results over the phone said “I’m sorry…,” my heart cracked a little bit. Because, like me, that mother hadn’t gotten a positive view of Down syndrome at first. She had only gotten the negative, and it had hurt her…just as it had hurt me when it happened to me. It’s a bruise on my heart that never really goes away and remains tender when poked, and it’s why I do what I do. By doing medical outreach, I get our organization’s name and contact information into the hands of medical providers so they can direct families receiving a diagnosis to Nancy, who can then welcome them into the organization and provide them whatever support they need.

And I got to thinking about that “I’m sorry.” Another friend in the community recently commented that her husband got the “I’m sorry” remark about their son the other day. And I thought, what a tough one that is. What’s our immediate response when we hear someone we care about is facing a challenging situation? “I’m sorry.” Because you are sorry; you don’t want to see someone you care about struggling. So I think it’s a natural response, but on the other hand, I want to say, “Don’t be sorry. Because I’m not.”

How could I be? How could I be sorry that I get to raise the most amazing little guy? A child who greets every day with a huge smile and a cheerful “Hiiiiiii!!!!” when I come in his room?

How could I be sorry that I get to witness perseverance at its best? A child who works so very, very hard to accomplish things, and then is ever so proud when he does? Just this morning, we reached the major milestone of him being able to pull up his pants on his own. Sound like something tiny? Yes, but it was huge. It’s years in the making, and it’s exciting! He was incredibly proud of himself, with a huge smile on his face to match mine!

How could I be sorry that I get to raise a little boy who has prompted so many people to say to me, “He has changed my life”? Four short years he’s been here, and he’s already changing lives. He gives people a glimpse into a world that they might not have gotten to be a part of if it weren’t for him.

How could I be sorry to get to watch an incredible brotherly bond between him and Theo? Their adoration is absolutely mutual, and it is probably the thing that makes me happiest in life—watching my two boys playing together and supporting one another.

How could I be sorry to live with a child who embraces every last bit of life? Who is downright joyful about the simple act of loading up in my Ergo back-carrier and walking his brother to school every morning? “Pouch!” he says to me, handing me the Ergo to put on, and then he stands there, literally bouncing in excitement, while I strap on the Ergo and pick him up to swing him into it.

And how could I be sorry when his tantrums remind me how very, very typical our life really is? It’s a funny thing to appreciate tantrums, but it reminds me that he’s very much a four-year-old boy, before anything else.

How could I be sorry, too, when I get to meet so many other excellent people who share his chromosomal anomaly? Like Eli, who identifies himself as a rocker and self-advocate, and who is instrumental in the Spread the Word to End the Word campaign, encouraging local students to pledge not to use three words: retard, retarded, and Trump. (That last one was his recent addition. His mother is slightly mortified about him politicizing, but I for one was delighted to see that he is now a registered voter and can cast his own vote to help end the T word. ) And Marissa, another self-advocate, a poised and lovely young woman who works our local events and is such a positive face for our organization. And Adam, who just turned 21 and couldn’t wait to buy his first beer! And Joseph, who calmly announced during his short speech at the Gala that his favorite part of working for our organization is payday! Smart man, Joseph…that’s my favorite day, too. And Blair, who loves to talk sports with visitors to our office and calmly offers his condolences to families who do not have children with Down syndrome.

There’s no sorry about it—my life is better for having Sam in it, and it’s better for knowing a huge group of people who I never would have met if it were not for having Sam. I am, for sure, one of the lucky ones.

{Post originally published on The Small Family Chronicles on May 22, 2016}

Thank you so much for sharing your incredibly wise words, Cathleen!  Sam is adorable!  

If you would like to contribute to the Downright Blessed: Life with Down Syndrome blog series, please send an email to lexieloolilyboodylantoo@yahoo.com.

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Downright Blessed - Farah's Story

The 21st is one of my favorite blogging days of the month. It's a day that I get to share the incredible stories and the beautiful faces that fill my social media feed!

I've had the chance to "meet" so many amazing moms through the DSDN, and Farah is one of them.  A few months ago, I followed a link to one of her blog posts and I immediately knew that I wanted to feature her story in the Downright Blessed series.  She just has a way with words!  

Meet Farah and the adorable Frankie!

 

FARAH'S STORY

Two kids, two years apart. One boy, one girl. It was my dream, my perfection, my plan. But it wasn't until our son, Tristan, was 2.5 years old that we even felt ready to try again. And then we were met with another 2.5 years of nothing. So when I was finally pregnant again in May 2014, we were over the moon.

My pregnancy was uneventful. I was considered "Advanced Maternal Age" in medical terms, but women have healthy babies at 38 years old every day. So it really felt like a formality when we had our in-depth conversation with the doctor about the possibility of something being wrong. My projected risk of Down syndrome and other trisomies was high because of my age, but when our screening results came back, our assessed risk dropped way down to the same as a 25 year old mother would face. We discussed further testing including the Materniti21 and amniocentisis. "But those tests won't tell you anything about a child's brain function, will they?" I remember asking. "No," said the doctor. We decided to wait for our 20 week sonogram. Should any structural anomalies or markers turn up then, we might consider other testing. But they didn't, so we didn't.

In hindsight, it feels like fate. We had decided to be surprised gender-wise, so when the doctor announced "It's a girl!" it was the most magical moment, like my life was complete. "5lbs 12oz" a nurse called out. "Wow, what a peanut!" we mused as I impatiently waited to see my little girl. Francesca Catherine was handed to me and I looked into her eyes. My stomach dropped. "Does she..." I started to say, but I stopped myself not wanting anything to ruin my most perfect moment. But I knew. Her beautiful kaleidoscopic eyes were so telling.

 

Now, 14 months later, the rest of the details don't seem so important. We were told in the hospital that Down syndrome was suspected and the diagnosis was confirmed a week later. I was crushed. After 2.5 years of infertility and two miscarriages it seemed so incredibly unfair. I remember telling a friend it was like I had finally gotten everything I had ever wanted with one huge caveat. All I saw were limits, dead ends, unteachability, exclusion, slowness. Failure. I was scared, I was uneducated, I didn't know...

To say that my life changed in that instant is the understatement of the year. I just didn't realize how amazing and how magical this change would be. In just 14 short months, Frankie - as we call her - has displayed a strength that belies he tiny body. She is strong, she is smart and she is very sassy and I don't underestimate her for a second anymore. She possesses an inner beauty and a peace so profound, it moves strangers on the street, in the stores and on the subway so much they feel the need to tell us simply yet with a sincerity that catches my breath, "She made my day." What could be more beautiful than that? I know how crazy I sound when I say it but I have never encountered another person so enchanting and so spiritual and I'm so lucky she's mine.

 

Now, instead of failure, I see a pretty, determined little girl making her way from baby to toddler. Maybe a little slower than others, but fiercely nonetheless. She is educating all of us around her and changing hearts and minds, not only about Down syndrome, but about inclusion, prejudice and presumption. And she is loved and loved and loved. By many. Not because of her diagnosis, or even in spite of it, but simply because she is our Frankie Cat.

  

Thank you for sharing your beautiful words and your beautiful daughter, Farah! 

You can find Farah on her blog, Eyes Like Sapphires, on Facebook, and on Instagram! 

If you would like to contribute to the Downright Blessed: Life with Down Syndrome series, please email lexieloolilyboodylantoo@yahoo.com.

Downright Blessed: Life With Down Syndrome ~ Meet Zoey

Happy Sunday, friends!  I hope you are having a blessed day with your loved ones!

It's the 21st which means it's time for another story to share for the Downright Blessed: Life with Down Syndrome series! This series has been ongoing for 6 months now.  It's definitely one of my favorite monthly features!

 

I'm so excited to introduce you to a beautiful little girl named Zoey Grace and her awesome mama, Sasha!  

I first connected with Sasha through Instagram, and we eventually became friends on Facebook. As a new(er) parent on the Down syndrome journey, I loved to see pictures of Zoey living life to the fullest.  Zoey filled my heart with so much hope for Liam, and Sasha has always been so supportive! Sasha is part of the DS "tribe" that I love so much and there is absolutely NO doubt that Zoey is happy and thriving. Zoey certainly brightens my days, and I'm sure she will brighten yours, too!

ZOEY'S STORY

Downright Blessed is the perfect title for these posts, as that's exactly how I feel about life with my daughter!

Hi, I'm Sasha and I'm so excited to share our story.  

Early in the year 2009 we had decided we would add to our family. At the time we had three children: Annicka (8), Jericho (4), and Liam (1).  Our plan was to wait for 2010, but I had prayed that God would send us a child in His timing and in May 2009 I discovered I was expecting our fourth child!

On September 9th I went for my 19 week ultra sound.  All I could think about was finding out if I'd have a third boy OR the second little girl I had been waiting for!  The news that our baby was a girl was so exciting, but quickly clouded by the information that she had fluid in her brain ventricles.

On October 12th I had a follow up u/s and they saw that the fluid in the ventricles had gone down, but the tech was pretty sure he saw two small holes in her heart ... an amniocentesis was recommended.  I still shudder to remember the mention of termination - clearly I had never experienced that in previous pregnancies and I was actually shocked it would be brought up.  I knew that no matter what, termination was not an option.  I went home to give good thought to whether I would have the amnio.  In the meantime I traveled to Los Angeles for a high tech u/s with a specialist at CHLA. At my next appointment I went ahead with the amnio and then the waiting began.

It was an agonizing time.  I prayed and prayed and begged God to "please let her be healthy and not have Down syndrome."  I remember thinking that Down syndrome wouldn't be such a big deal, compared to the many things that could actually be "wrong," nonetheless I was scared of the unknown.  I had a good friend who worked with children and adults with special needs and remember I felt like "I can't be a special needs parent, I've never been drawn to people with special needs" (essentially meaning I had no experience).

On October 22nd the doctor called, "I'm sorry, your baby does have Down syndrome." 

I held it together to quickly finish up the call. Then I broke down in tears.  Gathered myself again and called my mom. She was at work but I knew she was waiting to hear ... it just so happened that my best friend was there too.  I remember crying on the phone and my mom saying "it's going to be okay."  My mom and friend (who is more like a sister) said a prayer over the phone.  I had them pray for me to be strong when telling my husband. I was so nervous about how to have that conversation.  All I remember from telling him, is that he said something like "we'll deal with what comes as it comes" ... in other words, he was saying don't worry about everything that could be.  I think that was the moment that truly changed things.  Sure, all the unknowns were still scary, but worrying about the "what ifs" wasn't going to make a difference.

January 23, 2010 was the day our sweet baby arrived.  Ten days before her due date and it was my first time going into labor (I was induced with the first three)!  She weighed 8lbs 8oz and was 21" long.  I'll never forget them handing her to me - finally, I got to see that face I had so longed to lay eyes on.  She looked right at me and I knew immediately that my life had just changed forever and for the better!

We named her Zoey Grace Mabel!  Zoey was a name we had always liked.  At some point, after hearing she had medical issues, I had looked up the name Zoey and found that it means "life."  It was perfect!

She was then whisked away from us and sent to the NICU.  Thus began five and a half weeks in the hospital, between two different NICUs.  She was just so sick, due to her congenital heart defect (a complete AV canal).  The hospital where she was born had done everything they knew how, so she took a helicopter ride down to UCLA Mattel Children's Hospital.  I went and stayed nearby, as I was supplying her nutrition!  I won't say it was easy. Being away from my other kids was especially hard, but we made it work and got through it and finally brought her home!

On April 20th, just shy of three months old, Zoey had open heart surgery to correct her CHD.  I tell you what, that was another life changing day!  Suddenly my weak and seemingly fragile baby had some sass!!  We started seeing her little personality come out and it was extraordinary!

Zoey Grace is now six years old and she is truly the light of our family's life!  She loves to sing and dance, she loves to color and play with play dough, she loves to reenact movies and music videos - she is SO fun!  She's a daddy's girl, but also has plenty of love for mama and her siblings, whom she she also loves to tease!  I am currently homeschooling Zoey. She's learning to read, she can write her name, and we're working on counting, as well as other things!

Our lives are changed, but I like to share and show people that it really is for the better.  I would not be the person I am today without my little girl. She always makes me strive to be my best version of myself!  It's something that is hard to explain, so I encourage people to make a point of spending time with individuals with special needs. I believe you will quickly see why I say it's a beautiful life...it's a bella zoey!

Thank you so much for sharing your story, Sasha!  Zoey brings a smile to my face every single day!  

You can find the adorable Zoey Grace on Instagram and Facebook.

If you would like to contribute your story to the Downright Blessed: Life with Down Syndrome blog series, please send an email to lexieloolilyboodylantoo@yahoo.com.

Downright Blessed: Life With Down Syndrome ~ Jessica's Story

Happy Thursday, friends!  I hope 2016 is off to a great start for all of you!

We are in the midst of a cold spell in Pittsburgh, and I'm struggling to stay warm.  Thankfully, it's time to share another story in the Downright Blessed: Life with Down Syndrome series.  Nothing warms my heart more than seeing these beautiful faces and sharing these stories!

Sometimes these stories are difficult to read.  I often find myself crying as I prepare the posts, because it takes me back to the moment when I found out Liam had Down syndrome.  Those feelings are so raw and intense. But these stories always have a good ending.  These stories go from grief and sadness to pure joy!  And that's why I love sharing them.

I love the Down syndrome community.  Not only do we have an incredible local community, but I'm thankful to be able to connect with so many other families through Facebook and Instagram, too!

I met Jessica on Instagram, and we later became friends on Facebook.  I love seeing her gorgeous daughter's smiling face in my feed every single day!  I'm certain her smile will capture your hearts! 

Jessica is going to share her story today, but I just wanted to share a little fact that many people don't know.  It is a common misconception that only older mothers give birth to babies who have Down syndrome. The chance of having a child with Down syndrome DOES increase with age, BUT 80% of children with Down syndrome are born to mothers UNDER the age of 35!

80% of children with Down syndrome are born to women under 35 years of age. - See more at: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/#sthash.d81zn07c.dpuf

80% of children with Down syndrome are born to women under 35 years of age. - See more at: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/#sthash.d81zn07c.dpuf

Without further ado, meet Jessica and Ashland!!!

{JESSICA'S STORY}

I got pregnant when I was 27 years old.  This was my only pregnancy. I would say it was a normal pregnancy. I had morning sickness that made me miserable until the second trimester but that was the worst of it!

All testing that we had done had come back normal so we saw no need to do further testing. At 35 weeks my doctor became concerned of my size. He said I was all belly and that Ashland seemed to be measuring small for being 35 weeks. He sent me for an ultra sound during my next visit. At 36 weeks I had an ultra sound and what he thought was going on was indeed happening. I was losing fluid, so he put me on bed rest and told me to drink tons of water. I went back at 37 weeks and there was no improvement. I was sent for an induction. 

Everything became insanely real when we checked into the hospital. I knew I wasn't leaving without my baby. Everything was going smoothly. We checked in on Tuesday night and by 2:31 PM, on Wednesday October 22nd, 2014, Ashland Grace Webster was here! 

Labor and delivery was pretty easy. It was the moment I had been waiting for when they handed Ashland to me. I looked at my beautiful 5lb 10oz baby girl and I knew, in that moment, that my daughter had Down syndrome.

I waited for everyone to leave the room. It was just Ashland, her father and myself. I looked at Jeff (her dad) and asked him if he thought her eyes looked different. I just kept asking him over and over. He told me she looked fine and was swollen. Why did I keep asking about her eyes? I said her eyes looked like a baby with Down syndrome. He told me I was crazy. 

We got into our room and all I wanted was for everyone to go away. My best friend, who happens to be a NICU nurse and was also was in the delivery room, came back with her husband to see us.  I knew this was my chance to see if I was really crazy. I asked Hannah if she thought her eyes looked different. Hannah holds nothing back and doesn't sugar coat anything. Her response to me was "Oh, I don't know. If you have a concern just ask the pediatrician."  She never looked at me while answering this question. That confirmed what I already knew.

While Jeff and Ashland were sleeping I was like a crazy lady on Google. I read everything. Does she have small ears? Yes! Does she have a fold in her ears? Yes! Does she have a crease in the palm of her hands? Yes! Does her tongue stick out? Yes!  All I could do was pray. Pray that I was wrong.

Thursday was a pretty easy morning. Nothing exciting. Jeff's brother came and brought breakfast. They took Ashland for the normal testing they do at the hospital. They brought her back and the pediatrician came in. She told us about the tests she had done and how they all came back normal.

I was thinking to myself "Well, she hasn't said it, so I'm wrong. I'm totally wrong."  She ended the conversation with "We would like to draw blood and have it tested. She shows characteristics of Down syndrome."

In that moment I knew what it felt like to be punched in the gut and slapped across the face. She kept talking but I went numb and didn't hear a word she said. I just wanted her to leave. 

She asked if we had any questions. I was quick to yell "No! We are good."  I just needed her out of the room so I could just lose it.

And that's what I did. I cried and just said "Why her? Why my daughter?" Jeff was pretty numb and he didn't really react. He just sat there in silence, I called my dad and cried some more. He told me everything was going to be okay. So I said "Okay then."

We went home late Friday and I knew I had to take her to get blood drawn Saturday morning. Hannah took us to the appointment and dropped us off and Jeff came and picked us back up. Everyone wanted to come over but I just didn't want to deal with anyone. But when I got home everyone was already there. 

Jeff has a son from a previous relationship. We weren't going to tell him anything because we just weren't ready or sure about how to explain it to him. Our very good friends came over. Trele took Ashland and was just smiling and staring at her, holding her, and telling her how much she loves her. At that point Hannah was the only one I told about her diagnosis. 

I knew I had to tell Trele and her husband, Alex. I was afraid when I told her she wouldn't see Ashland the same way anymore. Ace went outside and I asked Alex to sit down. I just told them that Ashland had Down syndrome and we had no idea. Of course I cried some more. Trele held my hand and told me she was a beautiful, prefect little girl. It didn't matter. She had a close family friend whose son had Down syndrome and she would get us together so we could talk. 

That's what I did. I went and talked to this family and I knew I wasn't alone anymore. She put me in contact with amazing people and I will forever be grateful for that. Friends that I hadn't been as close to stepped up and have been there. Not just for me, but for Ashland. 

It has been such a beautiful, humbling experience. It's an honor really to be her mother. Ashland has brought a lot of us together. These people in our lives see her as we do: A wild, sassy, sweet and loving 1 year old. They see her as Ashland, not as a kid with Down syndrome. 

It's amazing what such a little person can do to you!

Jessica lives in Atlanta with her husband and daughter.  Ashland is currently almost 15 months and has a half brother who is 7 years old.  You can find Jessica on Instagram! Show her some love!

Thank you so much for sharing your story, Jessica! Ashland IS perfect and beautiful, and she has the most contagious smile! 

If you're interested in contributing to the Downright Blessed: Life with Down Syndrome series, please send an email to lexieloolilyboodylantoo@yahoo.com.

Downright Blessed: Life with Down Syndrome ~ Sutherlynn Joy

Happy Monday, friends!  It's the 21st, which means it's time to share another story for the monthly Downright Blessed: Life with Down Syndrome series!

Downright Blessed: Meet Ella!

In the 2 years since Liam was born, I've had the opportunity to meet some truly incredible people! 

They are people I never would have met if Liam wasn't diagnosed with Down syndrome. My family was lucky enough to personally meet many of these incredible families, but just as many connections were made online. 

The Down syndrome community is simply amazing, and my life is fuller with all these wonderful people in it!

Shortly after Liam was born, a new friend connected me with the Down Syndrome Diagnosis Network.  I was added to a Rockin' Mom Facebook group and met other moms who were new to this journey.  I immediately felt like I belonged!

Amanda is one of the moms I connected with through the DSDN! 

Amanda is a former fifth grade teacher, turned stay at home mom. She and her husband live with their beautiful daughter Gabriella aka Ella, in Maryland. She loves to craft and bake, especially specialty sugar cookies for her friends special occasions. She loves reading blogs, and one day hopes to be able to keep up with writing one. Until then, you can likely find her, on preschool days, wandering the aisles at Wegmans or Target. 

Amanda is here today to share her perspective on raising a child who has Down syndrome! 

Amanda and Ella

When I began writing this blog post, I really had a million thoughts about Down syndrome. There is so much I want you to know, mostly that my child is not all that different than yours. I don't write my own blog, so I've been having some trouble finding my voice. I went back to Stefanie's blog several times to figure out how to describe Down Right Blessed...

I'm blessed. Not only with a child who has Down syndrome, but to be raising her in a world where our education system values early intervention. She has therapists who know and believe that she can learn, and that she sometimes needs a different path than her peers. We are blessed too that we have social media outlets that allow us in the Down syndrome community to connect just by posting a question to other moms and dads who can help us troubleshoot with connections and suggestions.

I must admit, before having a child with Down syndrome, I thought I knew more than your 'average bear' about children with special needs. After all, I have a double major in elementary and special education. I taught in an inclusive classroom. I sat in countless IEP meetings. I saw, brainstormed, and worked through strategies to help students succeed. So when my first child was born with Down syndrome, I thought I had a "leg up". However, I was so entirely wrong.

I knew technical pieces of how to support a child with special needs to aid learning. But there is a whole different world of Down syndrome that I had turned a blind eye to. First there were the health factors. Ella was born with a large VSD, a common heart defect among people with Down syndrome, which meant there was no lower wall between the bottom chambers of the heart. This  led to many trips to the hospital. Not only were we new to the parent world, we were also new to heart failure symptoms. This led to many worried phone calls to doctors, nurses, and trips to the ER. I remember one night when her heart was in such failure, she refused to eat. She was two months old and I felt defeated. Not only did she not breastfeed, she stopped taking a bottle. We spent Memorial Day weekend in the hospital to put her on a Nasal Gastric tube (NG tube) since it took more energy than she could spare to physically eat by herself. She then had open heart surgery at 3 months old and came home on a nasal cannula providing her oxygen, which we were weaned off of officially in April! 

After that, Ella had to, and still has to, work hard to continually overcome her hypotonia (muscle weakness that children with Down syndrome are born with). It caused her to crawl late and walk late and still many everyday activities continue to be harder for her because hypotonia doesn't just affect gross movement. Her mouth, her face, her digestion, her vocal cords, etc. all rely upon muscle tone. 

Another thing you may not know is that everything tends to be smaller in a child with Down syndrome. Her ear canals, sinuses, nasal passages, etc. This leads to more ear infections, sinus infections, and the need to have her tonsils and adenoids removed so she can breath and swallow easier.

These are things I managed to not learn about before having a child with Down syndrome.  So I completely understand why society is so naive about people with disabilities. We tend to not learn about their specifics. We know the 'label', we know it makes a person different, and we likely can identify a disability based on looks. But beyond that, we haven't spent much time educating ourselves beyond the stereotypes. 

This is why I'm still a little sore over Down syndrome awareness month. There is only a small percentage of people who are spreading real awareness. Those people likely have a child with Down syndrome. The rest are spreading what they believe are inspirational stories about people with Down syndrome and others in the disability community. They share photos and videos that make society feel good about inclusion: a woman with Down syndrome gets crowned homecoming queen, a man with Down syndrome works a job, a super cute photo of a child with Down syndrome with the title "like if you think she's beautiful", etc. You see, this is fluff, a feel good piece. Our media allows you to feel good about inclusion. A piece we (parents and members of the disability community) want you to stop sharing, because it segregates our children. Your typically developing child can: work a job, be homecoming queen, take a beautiful picture; but ABC 7 doesn't  do a story about  it on the 6 o'clock news. Certainly my child works hard to overcome indifferences but doesn't yours? Aren't we always struggling with something? Whether it be out in the open or a private, that's what makes us human.

I understand my daughter will be different than yours, but isn't your daughter different than your neighbor's daughter? 

You see we all strive for our children to be valued for their unique differences, but we too, wish for them to be included. 

Which is why I think all mothers (parents), not only the ones who have a child with a disability, can relate to these sentiments, because we as humans are all a lot more alike than different...

I want you to see my child as an equal,

But respect and celebrate her differences.

I want you to expect the same from my child as other children,

But value that expectations look different for each person.

I do NOT want you to baby my child,

But understand that she may last a little longer in baby stages.

I want you to know my child is hard working and has strong perseverance,

But remember to celebrate the little milestones she worked so hard to accomplish.

I want you to know I'm a mom just like you... I worry, I fret, I celebrate, I love, 

But even though my struggles may look different than yours at times, please don't feel sorry for me.

I want you to be aware and ask questions, and know that I'd rather you ask questions than to assume based on stereotypes about Down Syndrome.

So in this holiday season, while we reflect upon our year and resolve to make changes for next year, I encourage you to take some time to become more aware of others in your community. By making yourself more aware of someone else, understand their differences, and celebrate who they are, we can all begin to see that all our children are more alike than different.  

Thank you so much for sharing your story and beautiful Ella with us, Amanda!

You can find Amanda HERE.  

If you're interested in contributing to the Downright Blessed: Life with Down Syndrome series, please send an email to lexieloolilyboodylantoo@yahoo.com. 

Aim to Inspire

When Liam was born with a life-changing diagnosis, it felt like life as we knew it had come to an end.

It didn't take long to realize that our story was just beginning.

Our lives did change.  Just not in the ways we expected.  Instead, our family was enhanced by that extra chromosome!

I always tell people that receiving a Down syndrome diagnosis is like joining an exclusive club that you would never ever want to join.  Yet once you get there, you never ever want to leave.  The Down syndrome community is amazing!

Liam was just a few weeks old when we received his genetic test results. I typed up that post with tears in my eyes, and with all the courage I could muster, I finally hit publish.  As the comments flooded in on my blog, facebook, twitter, and instagram, along with all the texts and emails, the tears fell even faster.  These tears, however, were caused by the overwhelming love and support that was directed our way.

We quickly settled into a rhythm as a family of six, and I was struck by how perfectly normal life still was.  Liam began to fill our lives with love, joy, and smiles that could brighten the darkest days.  I began to share what life was like with Down syndrome in the hopes that I could shatter some of those misconceptions and inspire just ONE person.

It didn't take long for that smile to capture the hearts of those near and far.  So I shared more.  I shared his weight-gain struggles and I shared all his adventures.  Mostly, I shared the fact that he's JUST a little boy like any other. 


{Photo: Kelly Searle Photography}


The unique thing about Liam is that most people don't even realize he has Down syndrome unless they have experience with it. When I tell people he has it, it's usually met with shock, then followed by questions.  I welcome questions!  Asking questions is how people educate themselves, and that's a good thing!

There was a time when I didn't share the fact that Liam has Down syndrome with people I ran into.  Now I share it proudly. I have nothing to be ashamed of.  My love for my boy is fierce and I am so proud of him!

At the very beginning of our journey, I turned to other blogs, Facebook pages, and Instagram. I began following families who had children with Down syndrome.  Seeing them live "typical" lives gave me so much hope. 

I fell in love with these kids from afar.  I cheered at their accomplishments. I prayed during surgeries and health scares.  I let out sighs of relief when those surgeries went well or when doctors gave them good news. I cried when their moms cried.  The thing about having a child with Down syndrome is that you don't just have your child.  You have an entire community that you care SO much about. 

We all have different stories, but we have the same goal: we want the world to accept our little blessings and notice all those special things that captured our hearts.  In order to do that, we share.  We share our lives and we share often. All we want to do is make a difference and inspire change!

All of my sharing IS making a difference.  LIAM is making a difference! It's evident in the frequent emails and messages that I receive. THAT is why I share Liam and life with Down syndrome.  THAT is why I'll continue to share for as long as I possibly can. I just want people to realize that Down syndrome is not as scary as it's made out to be! I want people to see that we are living a perfectly "normal" life and that we LOVE this life we are living.

My story is just one of many.  There are so many stories out there that deserve to be shared. Every single story is worth hearing.  

A few months ago, an idea began to form, and I began to reach out to others. Soon, I'll be launching the Downright Blessed: Life with Down Syndrome series on my blog!  Every month, on the 21st, a different mom (or dad!) will share their story.  I can't wait for you to read about these beautiful, inspiring kids and their amazing families!

We truly are downright blessed! 
  
If you would like to be part of the Downright Blessed: Life with Down Syndrome series, please send an email to lexieloolilyboodylantoo@yahoo.com. 

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