This post is sponsored by the CDC's National Center on Birth Defects and Developmental Disabilities in collaboration with The Motherhood.
Showing posts with label World Down Syndrome Day. Show all posts
Showing posts with label World Down Syndrome Day. Show all posts
Wednesday, March 21, 2018
World Down Syndrome Day: 21 Things You May Not Know About Down Syndrome
This post is sponsored by the CDC's National Center on Birth Defects and Developmental Disabilities in collaboration with The Motherhood.
Tuesday, March 21, 2017
Your Questions Answered: The Real Truth About Down Syndrome {Tuesday Talk}
Happy World Down Syndrome Day! I can hardly believe that we have been celebrating this day for four years. Our surprise baby is growing up far too quickly!
People often question why we celebrate something that causes widespread fear. The truth is, you can never really understand something until you live it. We've been on this journey for 3 1/2 years, and I can honestly tell you it's nothing to fear! Today, we are celebrating the beauty of Down syndrome and all of our fellow human beings who are rocking an extra chromosome, including our beautiful son, Liam!
Many of you were reading my blog when I was pregnant with Liam, and were there for the shocking announcement after he was born. There are some new readers, so for those who are interested, you can read the full story HERE.
One of the things that surprises me the most is how many people reach out to me after finding my posts on Pinterest. Emails and questions come in weekly, and one of my favorite things is helping the scared moms who are beginning this journey. I was that scared mom once, and I love being able to give them some hope!
I firmly believe in open conversation about Down syndrome, so I do my best to answer every question that comes my way. Sometimes people feel awkward and are afraid to ask, but I welcome questions and love to discuss it. In honor of World Down Syndrome Day, I'm sharing the most common questions I receive about Liam, a Down syndrome diagnosis, and life with Down syndrome.
Did you know before birth?
We had NO idea! We were told our baby was textbook perfect, so that's exactly what we expected. To say we were surprised is an understatement! I had no idea that a birth diagnosis is actually quite common.
When did you find out the news?
Right after Liam was born, two of the four doctors in the room suspected Down syndrome while the other two did not. There was some debate between them, but they decided he needed to be thoroughly examined and they ordered a blood test. We were supposed to receive the results in 24-48 hours, but we ended up taking our newborn home without any answers.
Every single day I called, and every single day I was told they were having trouble getting accurate results. As the weeks went by, we began to worry that it was something worse. Finally, when Liam was nearly a month old, his pediatrician had enough. She called the lab on the spot and demanded answers within an hour.
One hour later, I received the phone call. As I cradled my tiny 3 1/2 week old baby in my arms, I listened to his doctor confirm the news that I had known since the moment my eyes met his for the very first time.
How was it missed?
Down syndrome was not detected during the initial blood screening or in all the ultrasounds that followed. Just like his two sisters, Liam had a white spot on his heart which can sometimes be a soft marker for Down syndrome, but that's almost always present with other markers, which are spotted during ultrasounds. Every ultrasound showed a perfectly healthy baby with normal measurements.
Even if we HAD known, it wouldn't have changed anything. We just would have been better prepared. Our chances of having a baby with Down syndrome was 1 in nearly 900. Just let that sink in! It's obvious why it was never even on our radar. One important thing to remember is that unless it's an amnio result, prenatal screening is not fail-proof!
Aren't you too young to have a baby with Down syndrome?
This one is a fair question, because I once thought the same thing. The fact that only older mothers have babies with Down syndrome is one of the biggest misconceptions! Although the chances of having a baby with Down syndrome increases with age, more babies with Down syndrome are born to mothers UNDER the age of 35! I personally know many teenagers, and first time moms in their twenties, who gave birth to a baby with Down syndrome.
Will it ever go away?
Many people confuse genetic condition with chronic illness. Down syndrome is a genetic condition and it will never go away. No miracle vitamin, pill, or magical therapy will take it away. Liam will always have that third copy of his 21st chromosome.
What caused it?
I think this answer scares people the most. In almost all cases of Down syndrome, it occurs by chance. There is absolutely no way to prevent it, other than by not having a baby. It happens by chance at conception, and nobody is exempt.
When Liam was conceived, I was young, healthy and fit. I exercised several times a week, ate a healthy diet and took a prenatal vitamin. I don't drink any alcohol, smoke, or take any pills other than the occasional OTC painkiller. I did EVERYTHING right. I couldn't have done anything to prevent it.
What was your reaction?
I can't sugar coat this answer in any way. I was devastated, and my feelings were UGLY. I can't even talk about it without feeling guilty. I didn't want this baby. All I wanted was the perfect baby I expected. I felt as if life as I knew it was ending, and we were doomed to living the rest of our lives in depression, secluded from the rest of the world.
What I soon found out was that every feeling I had at that time was justified. Thankfully, I started to accept our new normal within 24 hours and was able to move forward.
What surprised you the most about Down syndrome?
Honestly, how normal life can be. We are doing everything a "typical" family does and most days, we forget Liam even has Down syndrome!
What were your struggles?
Getting Liam to gain weight was incredibly difficult! He ended up hospitalized at two months old, because he was still under his birth weight of 7 lbs 11 oz. The doctors checked for every possible cause during that stay and they couldn't find a single thing wrong with him.
Liam was just high energy from the start. He rolled over at 3 weeks old and never stopped moving. (Just FYI, he still hasn't stopped!) He burned off more calories than he took in, and the result was a baby that was so scrawny. He didn't reach 10 lbs until after he turned 6 months old and even now, at 3 1/2, he's only 27 lbs. He's just a lightweight dude!
What do Liam's siblings think of him?
Dylan, Lexie and Lily adore him and they are so proud of him! They fell in love with him right away. We were open with them about Down syndrome from the start, and immediately started exposing them to the Down syndrome community. Watching them grow into compassionate, accepting, loving human beings was a beautiful thing. I can't even adequately describe the love that they have for Liam. It literally brings me to tears. The moments I capture on camera speak volumes about their love for each other. They are all so blessed to have each other!
Are you sure he has Down syndrome?
This question always makes me laugh, and it has even been asked by parents who have children with Down syndrome! I understand, though There are times when Down syndrome completely disappears from his face, and even I questioned it at times. Yes, we are sure, but we will never know for certain which type he has.
All of Liam's medical professionals believe he has mosaic Down syndrome, in which the extra chromosome is only found in a percentage of cells in his body instead of every cell. It's still Down syndrome, but the physical traits are less noticeable, there's usually a lack of health issues, and the delays aren't significant. It describes Liam perfectly.
In order to find out for sure, we would need to pay thousands of dollars out of pocket to get a test done that checks 500 cells for the extra chromosome. While it would be awesome to know for sure, it truly doesn't matter. Down syndrome is Down syndrome, and he's still going to have it whether that extra chromosome is in every cell or only in a few. The only thing that matters is that Liam is happy, healthy, thriving and completely rocking it!
I hope you learned a little bit more about Down syndrome today, and we hope you will join us in celebrating World Down Syndrome Day by wearing blue and yellow, and rocking crazy socks in support of those who are rocking an extra chromosome!
If you have any other questions, feel free to email me or leave them in the comments. I'm an open book!
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Justine at Full Hands, Full Heart
Thursday, March 24, 2016
21 Acts of Kindness for Down Syndrome Awareness
At the beginning of March, our family embarked on a journey to perform 21 Acts of Kindness leading up to World Down Syndrome Day on March 21st.
We did this in honor of our sweet Liam who is rocking that extra chromosome. We are just so thankful for the incredible love and joy he brings to our lives every single day, and we wanted to spread the love and kindness that we are so lucky to receive. We also did it to bring awareness for an often misunderstood genetic condition.
We spent three weeks spreading kindness and it was such a wonderful experience! I shared our #21ActsofKindnessforLiam on social media each day to chronicle our adventure. It was so much fun to surprise others with kindness, and it really did end up sparking many conversations!
Act #1: We love our local library so much, so we dropped off Lofthouse Cookies for the staff.
Act #2: We sent in a little gift for Dylan's amazing teacher!
Act #3: We dropped off donuts for the office staff at Lexie's elementary school.
Act #4: We dropped off supplies to our local humane society.
Act #5: We mailed a little gift to a sweet online friend of mine.
Act #6: We gave a $5 Starbucks gift card to a random person in line.
Act #7: We bought cookies for the staff at Lily's preschool.
Act #8: We handed out sidewalk chalk at our favorite park.
Act #9: We gave flowers to an elderly woman at the park.
Act #10: We put together a small goody bag of items from the Target Dollar spot and gave it to a little girl at Disney on Ice Frozen!
Act #11: We mailed a package to a very supportive family whom we have never even met!
Act #12: Lexie took in a gift to a teacher she loves who helps out in her classroom.
Act #13: We dropped off donuts for the wonderful ladies at our local pharmacy.
Act #14: We took donuts to the office staff at the school Lily will attend in the Fall.
Act #15: We handed out an activity pack to a sweet little girl at the park.
Act #16: We dropped off cookies to the office staff at Dylan's school.
Act #17: We bought a restaurant gift card for a dear friend (and his wife) who just had heart surgery.
Act #18: I was given the chance to review The Parent's Guide to Down Syndrome (which is an amazing resource), so I decided to buy a copy and give it away to a parent who is on the same journey as we are!
Act #19: Give an activity pack and a lollipop to a crying child.
Act #20: Buy an elderly gentleman's bread, milk, and bananas.
Act #21: For our final act, on World Down Syndrome Day, we took the 321 Pledge! In other words, we donated $21 to help a person who has Down syndrome achieve their dream of a higher education. I hope that one day Liam will be lucky enough to attend college!
I challenge EVERYONE to be kind. Kindness is free and can change the world one simple act at a a time. And if you want to give a gift of kindness to brighten someone's day, it doesn't have to cost much at all!
Although we had a few acts of kindness that cost a bit more, the majority of the acts only cost $1-$3. In the grand scheme of things, that really isn't much!
The best part of this experience was the fact that Dylan, Lexie and Lily were really excited about performing these acts of kindness! We made a list, and they kept adding to it over the course of the month. They just wanted to give MORE and that's a great thing! We already started our list for next year!
I truly loved all of our acts of kindness, but I have to admit, my favorite was walking up to the elderly woman at the park and handing her a plant. She was so surprised! It only cost $1 to make her smile. That's it. One single dollar. It really is as simple as that!
Our 21 days of giving was such a great experience that it inspired us to give even more throughout the year. We make it a point to donate as much as we possibly can, but we want to continue these simple acts of kindness. We're going to perform one unexpected and meaningful act of kindness each month, because what we learned from all this is that it really doesn't take much to brighten someone's day!
This entire experience was inspired by our amazing little boy who taught us so much in his 2 1/2 years of life. There are still so many people out there who consider him unworthy of life, but the truth is, he changed OUR lives. He always inspires us to be better human beings. He IS worthy.
Have you performed any acts of kindness?
We did this in honor of our sweet Liam who is rocking that extra chromosome. We are just so thankful for the incredible love and joy he brings to our lives every single day, and we wanted to spread the love and kindness that we are so lucky to receive. We also did it to bring awareness for an often misunderstood genetic condition.
We spent three weeks spreading kindness and it was such a wonderful experience! I shared our #21ActsofKindnessforLiam on social media each day to chronicle our adventure. It was so much fun to surprise others with kindness, and it really did end up sparking many conversations!
Act #1: We love our local library so much, so we dropped off Lofthouse Cookies for the staff.
Act #2: We sent in a little gift for Dylan's amazing teacher!
Act #3: We dropped off donuts for the office staff at Lexie's elementary school.
Act #4: We dropped off supplies to our local humane society.
Act #5: We mailed a little gift to a sweet online friend of mine.
Act #6: We gave a $5 Starbucks gift card to a random person in line.
Act #7: We bought cookies for the staff at Lily's preschool.
Act #8: We handed out sidewalk chalk at our favorite park.
Act #9: We gave flowers to an elderly woman at the park.
Act #10: We put together a small goody bag of items from the Target Dollar spot and gave it to a little girl at Disney on Ice Frozen!
Act #11: We mailed a package to a very supportive family whom we have never even met!
Act #12: Lexie took in a gift to a teacher she loves who helps out in her classroom.
Act #13: We dropped off donuts for the wonderful ladies at our local pharmacy.
Act #14: We took donuts to the office staff at the school Lily will attend in the Fall.
Act #15: We handed out an activity pack to a sweet little girl at the park.
Act #16: We dropped off cookies to the office staff at Dylan's school.
Act #17: We bought a restaurant gift card for a dear friend (and his wife) who just had heart surgery.
Act #18: I was given the chance to review The Parent's Guide to Down Syndrome (which is an amazing resource), so I decided to buy a copy and give it away to a parent who is on the same journey as we are!
Act #19: Give an activity pack and a lollipop to a crying child.
Act #20: Buy an elderly gentleman's bread, milk, and bananas.
Act #21: For our final act, on World Down Syndrome Day, we took the 321 Pledge! In other words, we donated $21 to help a person who has Down syndrome achieve their dream of a higher education. I hope that one day Liam will be lucky enough to attend college!
I challenge EVERYONE to be kind. Kindness is free and can change the world one simple act at a a time. And if you want to give a gift of kindness to brighten someone's day, it doesn't have to cost much at all!
Although we had a few acts of kindness that cost a bit more, the majority of the acts only cost $1-$3. In the grand scheme of things, that really isn't much!
The best part of this experience was the fact that Dylan, Lexie and Lily were really excited about performing these acts of kindness! We made a list, and they kept adding to it over the course of the month. They just wanted to give MORE and that's a great thing! We already started our list for next year!
I truly loved all of our acts of kindness, but I have to admit, my favorite was walking up to the elderly woman at the park and handing her a plant. She was so surprised! It only cost $1 to make her smile. That's it. One single dollar. It really is as simple as that!
Our 21 days of giving was such a great experience that it inspired us to give even more throughout the year. We make it a point to donate as much as we possibly can, but we want to continue these simple acts of kindness. We're going to perform one unexpected and meaningful act of kindness each month, because what we learned from all this is that it really doesn't take much to brighten someone's day!
This entire experience was inspired by our amazing little boy who taught us so much in his 2 1/2 years of life. There are still so many people out there who consider him unworthy of life, but the truth is, he changed OUR lives. He always inspires us to be better human beings. He IS worthy.
Have you performed any acts of kindness?
Monday, March 21, 2016
We're Downright Blessed!
Happy World Down Syndrome Day!
Three years ago, I had no idea this day even existed. I didn't have a clue that the baby I was carrying would rock our world in so many ways!
I read stories about people getting a Down syndrome diagnosis at birth and I wondered how it could possibly go undetected. I didn't think it could ever happen to me! My chance of having a child with Down syndrome was 1 in nearly 800.
Prior to having Liam, I was completely healthy. I didn't drink, I didn't smoke, I ate a healthy diet, I exercised regularly, I took prenatal vitamins, and I was in my early thirties. After I found out I was expecting, the blood test results came back normal. I had multiple ultrasounds, and I was told by 3 doctors and our ultrasound tech that our baby was "textbook perfect."
Imagine our surprise in the delivery room!
I would typically be sharing a Downright Blessed: Life with Down Syndrome story today, but since it's an extra special day, I figured I would share a condensed version of Liam's birth story again. After all, he is the reason I started this series in the first place!
(You can find the full story and all the pictures HERE.)
Liam's birth story is nothing like I imagined it would be. It was the day that changed our lives forever. Only one word comes to mind now: BLESSED.
It all began on the day I reached 37 weeks.
That afternoon, my mom and I had plans to go to Costco and WalMart to stock up on food and supplies before the baby arrived. When I picked her up from work, I joked about our shopping trip putting me into labor. Little did I know that would be true!
While we were out, I was having very strong Braxton Hick's contractions. By the time we finished shopping, there were slightly painful ones mixed in. That evening, I told Grant that I was pretty sure that I was in the early stage of labor.
The next day was Saturday, so we all slept in. Sure enough, when I woke up, the contractions started again. I called my parents around noon to give them the warning that I would probably be going to the hospital within the next 24 hours.
That evening, we had plans to go to our friend's house for dinner. Grant thought I was completely crazy for still wanting to go, considering the fact that I had been having regular contractions for almost 24 hours.
We went, and during an absolutely delicious dinner, the need to actually time the contractions hit me. I downloaded the app while we were eating, and I began timing the contractions.
After dinner, we all sat down and just spent the evening talking. My contractions were coming every 5-10 minutes. Every time I had one, everybody stared at me in silence until it passed. I finally looked at Grant and told him that we should probably go home, put the kids to bed, and get things ready to go to the hospital.
Once the kids were in bed, we sat down on the couch. I was still having contractions, but they had slowed down a bit. We headed to bed, confused and frustrated. I only slept about 2 hours, then got out of bed, in the middle of the night.
I was feeling very restless and the contractions were coming every 5-10 minutes again. I had coffee, cleaned the house, talked to a few friends and family members, got ready, and paced the house.
Around 6 AM, Grant noticed the bed was empty and ran to check on me. I told him that I thought we would be heading to the hospital soon. He suggested that we leave then, but I was still in denial and thought they would send me home if I went to the hospital.
Sometime between 7-8, I realized that this was it. I called my parents to tell them that they should come over soon, then I called my OB office, and waited for a call back from the on-call doctor. When the doctor called back and told me to come in, I was so relieved. I was also thrilled that my favorite doctor was going to be the one to deliver my baby!
My parents arrived, we kissed the kids goodbye, and headed to the hospital.
Let it be known that GRANT WAS RIGHT...AGAIN! We should have left at 6 AM.
By the time we got in the car, I was in full-blown, active, PAINFUL labor. The contractions were coming at lightning speed, and once again, I felt like I was going to deliver in the car. It was exactly like our experience driving to the hospital when I was in labor with Lily. I was gripping my seat the entire time.
We reached the hospital just before 9 AM, and we slowly made our way to labor and delivery. Our nurse, Crissy, met us in the hallway, and Dr. Kapnadak waved to us from the desk. Crissy took us to triage, because I was only 37 weeks, and they wanted to make sure it was actual labor.
The only other time I had to go to triage first was with Dylan, who was born preterm. I gave a urine sample, got changed into the hospital gown, answered all the questions, got hooked up to the monitor, and waited for my doctor. Meanwhile, Grant got to hear our baby's heartbeat for the very first time! My doctor came in, checked me, and announced that I was over 5 cm and completely effaced! This was it!
Everything happened really fast after that. We walked to the delivery room, and the nurse hooked me up to the monitors. My IV was put in, and soon after, I got the epidural. Grant got our bags from the car while I was having it put in. This was a much more pleasant experience than my previous experiences with the epidural!
Once the pain medication kicked in, Grant and I were able to relax, and tell everybody that it would be our baby's birthday! He/She would be sharing a birthday with my sister, Pam! I was still in disbelief, but so excited to meet our baby!
I spent the next two hours quietly progressing. Whenever I had to lay on my back to get checked, my blood pressure would plummet, causing me to nearly pass out and feel really nauseous. Medication helped somewhat, but I just avoided my back!
Grant and I kept checking the heart rate and putting in our guesses for the gender, attempted to choose a boy name, and visited with my sister, Kelly, who showed up near the end of my labor.
Finally the doctor came in for another check, and said that I was fully dilated and ready to go! I can't remember the exact time, but I think it was sometime after 1:00. My sister went to the waiting room, and they quickly got the bed ready for delivery. Surprisingly, my water never broke!
I remember thinking how surreal it felt and feeling like it was all going by too quickly.
Everything that happened from that point on was a blur.
Pushing felt very difficult this time. My legs were heavier than they had ever been from the epidural, so I couldn't even hold on to them. I struggled with feeling like I was going to pass out or fall off the bed. I was really uncomfortable, but I pushed and pushed and pushed.
I really only pushed a few times, but it felt like a long time! The doctor explained that she hated to do an Episiotomy unless absolutely necessary, and this time it was. He almost came out at the first push, but his head was just too big. After a few pushes, the baby went into distress, and the doctor told me that I HAD to push him out with one more push, or else she would have to use the vacuum. I had that done with Dylan and tore very bad, so I was motivated to push him out on my own!
I pushed with all my might, and our sweet baby entered the world!
Our baby let out a cry, and with it, I began to cry. Somebody, although I'm not sure if it was Grant or the doctor or the nurse, said, "It's a BOY!!! I tried to sit up to catch a glimpse of him. The doctor commented on just how short his cord was, then told Grant that she preferred to cut the cord so he didn't slip and accidentally cut me. We all laughed about that.
All I wanted for this delivery was for Grant to be able to cut the cord and for me to hold my baby right after birth. That has never happened for us! I was bummed that Grant wasn't able to cut the cord, but still hopeful that I could hold my baby.
I remember the doctor commenting again about how short his cord was, and staring down, looking very concerned. Now I know why.
I reached out to grab my baby when the doctor handed him over to our nurse. The blanket was already on my chest, all ready for me to hold him for the first time. Disappointment and worry kicked in as the nurse spun on her heel and handed him to another nurse.
After that, the room went completely silent. No baby cries, no talking, just absolute silence.
I remember asking if he was okay, and receiving no immediate answer. The doctor wouldn't even meet my eyes, which was very strange. I believe our nurse told us that he got fluid in his lungs during his birth, and that he just needed a little help breathing. She kept squeezing my hand and patting my arm.
Minutes went by, and more doctors entered the room. I repeatedly asked if everything was okay, because our son was completely silent, and nobody answered. I just remember a group of doctors and nurses surrounding his bassinet and speaking very quietly.
By that point, I knew something was wrong.
My doctor finished up, said congratulations, flashed us a quick smile, and left the room. Still no baby cries.
Eventually, he began crying again, and we breathed a huge sigh of relief. Doctors and nurses began to leave the room. The remaining nurse brought him over and handed him to me, as if nothing had happened, then left the room, so we could bond with our new son.
After so many agonizing minutes, we were thrilled to have him in our arms.
The room was completely empty and the delivery lights were still shining brightly on the bed. I took my son from the nurse, and held him out so Grant and I could finally see him. His eyes were wide open and they locked on mine. As soon as our eyes met, my heart plummeted.
Those eyes were so much different than my other newborns. I knew. I just knew, deep in my heart, that he wasn't the baby we expected. I actually turned to ask the nurse if he had Down syndrome, and nobody was there. I stared at him and every expectation I had for him and our future shattered.
I started to cry while I was holding him. I turned to Grant, sobbing, "He has Down syndrome." I remember the shock on Grant's face and him asking me how I knew. All I could say was, "He does. He just does."
We were alone in that room for what felt like an eternity. Grief enveloped me as I hugged my baby, and I couldn't stop the tears from falling. Nobody came in to check on us. I remember feeling so alone and lost.
After what felt like hours, a doctor came into the room, pulled over a chair, and sat down. That's never a good sign. He didn't have to say a word. I already knew.
He struggled to put into words that some of the doctors suspected our baby had a genetic disorder. I remember Grant asking, "Do you mean Down syndrome?" I remember the doctor nodding his head, then assuring us that all our questions would be answered. As if that wasn't enough to process, he told us that 3 out of every 5 babies born with Down syndrome have a major heart defect and that he needed to take him to the cardiologist immediately. With that, our son was whisked away yet again, and we were truly alone.
That's when I lost it. Completely, truly lost it. I sobbed, uncontrollably, while Grant tried to reassure me that it would all be okay. I think I kept repeating the same words. "It's not okay. I can't do this. I don't want to do this." I remember asking God why he did this to our beautiful baby.
I remember thinking that I didn't want any of this. I wanted the perfect, healthy baby I expected. Instead, we were faced with uncertainty. I was terrified we were going to lose our son or that he was going to need multiple surgeries, and I was terrified of how much our lives were going to change. I knew nothing would ever be the same again.
It felt like a nightmare. I kept thinking I was going to wake up at any moment, roll over, tell Grant all about it, and laugh at how much I worried about things. Everything that was happening was completely surreal.
Eventually, our son was brought back to us. Despite the grief, I knew I had a baby to take care of. I tried to nurse him. He would latch on, suck weakly for a few seconds, then turn his head away. On top of that, we still hadn't decided on his name. I finally told Grant to pick his name. Grant proudly walked over the the board, and wrote down his son's name.
We decided that Grant and Steph were going to take the kids out of the room as soon as they arrived so I could tell my parents everything. As soon as my parents walked into the room, we greeted the kids, and told them Grant was going to take them to the cafeteria for a treat. My parents immediately knew something was going on, especially since the baby wasn't in the room with us. The look on my mom's face was one of pure terror. As soon as the door closed behind them, my face crumpled.
I remember my mom's voice, filled with dread, "What's going on?" I remember trying to get the words out through my tears, "They think he has Down syndrome." I remember her dropping everything she was carrying to the ground, crying out, "NO!" and covering her mouth with her hand.
I think she hugged me while we cried, I think they asked questions, but I truly can't remember anything after her reaction. That is, until my awesome dad, with his amazing positive attitude, said, "Okay, where's my grandson? I want to meet him!"
Grant, Steph, and the kids returned, so I called the nurses station to ask for my son back. Steph pulled out her camera and began capturing all the special moments while we waited. We gave the kids their big sibling gifts, I tried to eat something but ended up feeding Lily instead, the kids felt my empty belly, and I showed them pictures of their new sibling. Dylan, Lexie, and Lily were the distraction we needed. Their happiness and excitement were contagious.
Liam's birth story was not an easy one to tell. There are quite a few things I wish I could change, but I would never want to change him. I honestly believe Grant and I were meant to receive such a special blessing. Even if we had known during my pregnancy, it wouldn't have changed anything.
Dylan, Lexie, and Lily's births were so special. Liam's birth was special, too. I remember the overwhelming feeling of joy when I met Dylan, Lexie, and Lily for the first time, but no matter how hard I try, I can't remember looking into their eyes for the first time.
The moment Liam's eyes met mine is seared into my mind forever. There are times when I close my eyes and the image is so vivid it makes me gasp. There are times when I try to relive the moment, and I can. It's just his face, illuminated by the only light in the room, and those big eyes staring into mine. That moment is so beautiful now. At the time, I failed to see his beauty. Now, his beauty is all I can see.
Liam changed our lives in so many ways. Liam challenged us to be better parents. He brought our family and friends closer. His birth brought so many amazing people into my life; people I never would have met if he didn't have Down syndrome. Liam made our lives better.
Every day, I thank God for giving Liam to me. He is a true gift and I am honored to be his mom. I wake up to his incredible smile every morning. He is joyful, determined, beautiful, captivating, and absolutely perfect. My love for this beautiful boy is immeasurable.
Three years ago, I had no idea this day even existed. I didn't have a clue that the baby I was carrying would rock our world in so many ways!
I read stories about people getting a Down syndrome diagnosis at birth and I wondered how it could possibly go undetected. I didn't think it could ever happen to me! My chance of having a child with Down syndrome was 1 in nearly 800.
Prior to having Liam, I was completely healthy. I didn't drink, I didn't smoke, I ate a healthy diet, I exercised regularly, I took prenatal vitamins, and I was in my early thirties. After I found out I was expecting, the blood test results came back normal. I had multiple ultrasounds, and I was told by 3 doctors and our ultrasound tech that our baby was "textbook perfect."
Imagine our surprise in the delivery room!
I would typically be sharing a Downright Blessed: Life with Down Syndrome story today, but since it's an extra special day, I figured I would share a condensed version of Liam's birth story again. After all, he is the reason I started this series in the first place!
(You can find the full story and all the pictures HERE.)
LIAM'S BIRTH STORY
Liam's birth story is nothing like I imagined it would be. It was the day that changed our lives forever. Only one word comes to mind now: BLESSED.
It all began on the day I reached 37 weeks.
That afternoon, my mom and I had plans to go to Costco and WalMart to stock up on food and supplies before the baby arrived. When I picked her up from work, I joked about our shopping trip putting me into labor. Little did I know that would be true!
While we were out, I was having very strong Braxton Hick's contractions. By the time we finished shopping, there were slightly painful ones mixed in. That evening, I told Grant that I was pretty sure that I was in the early stage of labor.
The next day was Saturday, so we all slept in. Sure enough, when I woke up, the contractions started again. I called my parents around noon to give them the warning that I would probably be going to the hospital within the next 24 hours.
That evening, we had plans to go to our friend's house for dinner. Grant thought I was completely crazy for still wanting to go, considering the fact that I had been having regular contractions for almost 24 hours.
We went, and during an absolutely delicious dinner, the need to actually time the contractions hit me. I downloaded the app while we were eating, and I began timing the contractions.
After dinner, we all sat down and just spent the evening talking. My contractions were coming every 5-10 minutes. Every time I had one, everybody stared at me in silence until it passed. I finally looked at Grant and told him that we should probably go home, put the kids to bed, and get things ready to go to the hospital.
Once the kids were in bed, we sat down on the couch. I was still having contractions, but they had slowed down a bit. We headed to bed, confused and frustrated. I only slept about 2 hours, then got out of bed, in the middle of the night.
I was feeling very restless and the contractions were coming every 5-10 minutes again. I had coffee, cleaned the house, talked to a few friends and family members, got ready, and paced the house.
Around 6 AM, Grant noticed the bed was empty and ran to check on me. I told him that I thought we would be heading to the hospital soon. He suggested that we leave then, but I was still in denial and thought they would send me home if I went to the hospital.
Sometime between 7-8, I realized that this was it. I called my parents to tell them that they should come over soon, then I called my OB office, and waited for a call back from the on-call doctor. When the doctor called back and told me to come in, I was so relieved. I was also thrilled that my favorite doctor was going to be the one to deliver my baby!
My parents arrived, we kissed the kids goodbye, and headed to the hospital.
Let it be known that GRANT WAS RIGHT...AGAIN! We should have left at 6 AM.
By the time we got in the car, I was in full-blown, active, PAINFUL labor. The contractions were coming at lightning speed, and once again, I felt like I was going to deliver in the car. It was exactly like our experience driving to the hospital when I was in labor with Lily. I was gripping my seat the entire time.
We reached the hospital just before 9 AM, and we slowly made our way to labor and delivery. Our nurse, Crissy, met us in the hallway, and Dr. Kapnadak waved to us from the desk. Crissy took us to triage, because I was only 37 weeks, and they wanted to make sure it was actual labor.
The only other time I had to go to triage first was with Dylan, who was born preterm. I gave a urine sample, got changed into the hospital gown, answered all the questions, got hooked up to the monitor, and waited for my doctor. Meanwhile, Grant got to hear our baby's heartbeat for the very first time! My doctor came in, checked me, and announced that I was over 5 cm and completely effaced! This was it!
Everything happened really fast after that. We walked to the delivery room, and the nurse hooked me up to the monitors. My IV was put in, and soon after, I got the epidural. Grant got our bags from the car while I was having it put in. This was a much more pleasant experience than my previous experiences with the epidural!
Once the pain medication kicked in, Grant and I were able to relax, and tell everybody that it would be our baby's birthday! He/She would be sharing a birthday with my sister, Pam! I was still in disbelief, but so excited to meet our baby!
I spent the next two hours quietly progressing. Whenever I had to lay on my back to get checked, my blood pressure would plummet, causing me to nearly pass out and feel really nauseous. Medication helped somewhat, but I just avoided my back!
Grant and I kept checking the heart rate and putting in our guesses for the gender, attempted to choose a boy name, and visited with my sister, Kelly, who showed up near the end of my labor.
Finally the doctor came in for another check, and said that I was fully dilated and ready to go! I can't remember the exact time, but I think it was sometime after 1:00. My sister went to the waiting room, and they quickly got the bed ready for delivery. Surprisingly, my water never broke!
I remember thinking how surreal it felt and feeling like it was all going by too quickly.
Everything that happened from that point on was a blur.
Pushing felt very difficult this time. My legs were heavier than they had ever been from the epidural, so I couldn't even hold on to them. I struggled with feeling like I was going to pass out or fall off the bed. I was really uncomfortable, but I pushed and pushed and pushed.
I really only pushed a few times, but it felt like a long time! The doctor explained that she hated to do an Episiotomy unless absolutely necessary, and this time it was. He almost came out at the first push, but his head was just too big. After a few pushes, the baby went into distress, and the doctor told me that I HAD to push him out with one more push, or else she would have to use the vacuum. I had that done with Dylan and tore very bad, so I was motivated to push him out on my own!
I pushed with all my might, and our sweet baby entered the world!
Our baby let out a cry, and with it, I began to cry. Somebody, although I'm not sure if it was Grant or the doctor or the nurse, said, "It's a BOY!!! I tried to sit up to catch a glimpse of him. The doctor commented on just how short his cord was, then told Grant that she preferred to cut the cord so he didn't slip and accidentally cut me. We all laughed about that.
All I wanted for this delivery was for Grant to be able to cut the cord and for me to hold my baby right after birth. That has never happened for us! I was bummed that Grant wasn't able to cut the cord, but still hopeful that I could hold my baby.
I remember the doctor commenting again about how short his cord was, and staring down, looking very concerned. Now I know why.
I reached out to grab my baby when the doctor handed him over to our nurse. The blanket was already on my chest, all ready for me to hold him for the first time. Disappointment and worry kicked in as the nurse spun on her heel and handed him to another nurse.
After that, the room went completely silent. No baby cries, no talking, just absolute silence.
I remember asking if he was okay, and receiving no immediate answer. The doctor wouldn't even meet my eyes, which was very strange. I believe our nurse told us that he got fluid in his lungs during his birth, and that he just needed a little help breathing. She kept squeezing my hand and patting my arm.
Minutes went by, and more doctors entered the room. I repeatedly asked if everything was okay, because our son was completely silent, and nobody answered. I just remember a group of doctors and nurses surrounding his bassinet and speaking very quietly.
By that point, I knew something was wrong.
My doctor finished up, said congratulations, flashed us a quick smile, and left the room. Still no baby cries.
Eventually, he began crying again, and we breathed a huge sigh of relief. Doctors and nurses began to leave the room. The remaining nurse brought him over and handed him to me, as if nothing had happened, then left the room, so we could bond with our new son.
After so many agonizing minutes, we were thrilled to have him in our arms.
The room was completely empty and the delivery lights were still shining brightly on the bed. I took my son from the nurse, and held him out so Grant and I could finally see him. His eyes were wide open and they locked on mine. As soon as our eyes met, my heart plummeted.
Those eyes were so much different than my other newborns. I knew. I just knew, deep in my heart, that he wasn't the baby we expected. I actually turned to ask the nurse if he had Down syndrome, and nobody was there. I stared at him and every expectation I had for him and our future shattered.
I started to cry while I was holding him. I turned to Grant, sobbing, "He has Down syndrome." I remember the shock on Grant's face and him asking me how I knew. All I could say was, "He does. He just does."
We were alone in that room for what felt like an eternity. Grief enveloped me as I hugged my baby, and I couldn't stop the tears from falling. Nobody came in to check on us. I remember feeling so alone and lost.
After what felt like hours, a doctor came into the room, pulled over a chair, and sat down. That's never a good sign. He didn't have to say a word. I already knew.
He struggled to put into words that some of the doctors suspected our baby had a genetic disorder. I remember Grant asking, "Do you mean Down syndrome?" I remember the doctor nodding his head, then assuring us that all our questions would be answered. As if that wasn't enough to process, he told us that 3 out of every 5 babies born with Down syndrome have a major heart defect and that he needed to take him to the cardiologist immediately. With that, our son was whisked away yet again, and we were truly alone.
That's when I lost it. Completely, truly lost it. I sobbed, uncontrollably, while Grant tried to reassure me that it would all be okay. I think I kept repeating the same words. "It's not okay. I can't do this. I don't want to do this." I remember asking God why he did this to our beautiful baby.
I remember thinking that I didn't want any of this. I wanted the perfect, healthy baby I expected. Instead, we were faced with uncertainty. I was terrified we were going to lose our son or that he was going to need multiple surgeries, and I was terrified of how much our lives were going to change. I knew nothing would ever be the same again.
It felt like a nightmare. I kept thinking I was going to wake up at any moment, roll over, tell Grant all about it, and laugh at how much I worried about things. Everything that was happening was completely surreal.
Eventually, our son was brought back to us. Despite the grief, I knew I had a baby to take care of. I tried to nurse him. He would latch on, suck weakly for a few seconds, then turn his head away. On top of that, we still hadn't decided on his name. I finally told Grant to pick his name. Grant proudly walked over the the board, and wrote down his son's name.
We realized we didn't have a single picture of our new baby boy. We
were never given the chance to pick up the camera. The first picture
taken of Liam was when he was in my arms for the second time.
All I wanted to do was hide out in our hospital room and hide our baby
from the world. I didn't want to break the news to our family and
friends. Unfortunately, my sister was in the waiting room, and family
and friends were on their way. Grant brought up the fact that my sister
had been waiting a long time and that we had to go get her.
Kelly came back to the room with Grant, and she was so excited to meet her nephew. We were still processing the news, so we didn't say anything. She could tell I had been crying, and asked if I was okay. I just told her I was tired and emotional. She was so happy to be there during my labor and was thrilled she was the first person to meet Liam. She held him and fussed over him, and didn't even notice anything was wrong.
Before leaving, she snapped a few pictures for us. I'm so glad she was there and so glad we have these pictures. A picture is worth a thousand words and these pictures tell quite a story.
Kelly came back to the room with Grant, and she was so excited to meet her nephew. We were still processing the news, so we didn't say anything. She could tell I had been crying, and asked if I was okay. I just told her I was tired and emotional. She was so happy to be there during my labor and was thrilled she was the first person to meet Liam. She held him and fussed over him, and didn't even notice anything was wrong.
Before leaving, she snapped a few pictures for us. I'm so glad she was there and so glad we have these pictures. A picture is worth a thousand words and these pictures tell quite a story.
After Kelly left, a nurse whisked Liam away, yet again, for more
testing. Once again, we were left in complete silence, and nobody came
in to talk to us. My legs were still numb, so I was trapped in bed. I
couldn't move, couldn't think, and I was emotionally and physically
exhausted. I felt completely numb and completely drained.
We called my parents, who were on their way with our kids. We didn't say anything to them about what was going on. Grant called his mom, and broke the news to her. I cried in the background as he spoke. At that point, I sent the most difficult message I ever had to write to some of my closest friends.
I was still crying when my dear friend, Steph, knocked on the door. As soon as she walked into the room, she saw the pain on my face, and she started to cry. She arrived at the hospital before reading my message, so she had no idea.
As she hugged me, I explained what was going on. She quickly pulled herself together and then pulled us together. Steph was the moral support we needed so badly. She put such a positive spin on everything and helped us so much. She started laughing and said, "I'm more surprised that it's a boy than I am that he has Down syndrome!" I am so thankful she was there for us. She saved us from falling deeper into depression.
We called my parents, who were on their way with our kids. We didn't say anything to them about what was going on. Grant called his mom, and broke the news to her. I cried in the background as he spoke. At that point, I sent the most difficult message I ever had to write to some of my closest friends.
I was still crying when my dear friend, Steph, knocked on the door. As soon as she walked into the room, she saw the pain on my face, and she started to cry. She arrived at the hospital before reading my message, so she had no idea.
As she hugged me, I explained what was going on. She quickly pulled herself together and then pulled us together. Steph was the moral support we needed so badly. She put such a positive spin on everything and helped us so much. She started laughing and said, "I'm more surprised that it's a boy than I am that he has Down syndrome!" I am so thankful she was there for us. She saved us from falling deeper into depression.
We decided that Grant and Steph were going to take the kids out of the room as soon as they arrived so I could tell my parents everything. As soon as my parents walked into the room, we greeted the kids, and told them Grant was going to take them to the cafeteria for a treat. My parents immediately knew something was going on, especially since the baby wasn't in the room with us. The look on my mom's face was one of pure terror. As soon as the door closed behind them, my face crumpled.
I remember my mom's voice, filled with dread, "What's going on?" I remember trying to get the words out through my tears, "They think he has Down syndrome." I remember her dropping everything she was carrying to the ground, crying out, "NO!" and covering her mouth with her hand.
I think she hugged me while we cried, I think they asked questions, but I truly can't remember anything after her reaction. That is, until my awesome dad, with his amazing positive attitude, said, "Okay, where's my grandson? I want to meet him!"
Grant, Steph, and the kids returned, so I called the nurses station to ask for my son back. Steph pulled out her camera and began capturing all the special moments while we waited. We gave the kids their big sibling gifts, I tried to eat something but ended up feeding Lily instead, the kids felt my empty belly, and I showed them pictures of their new sibling. Dylan, Lexie, and Lily were the distraction we needed. Their happiness and excitement were contagious.
I was so afraid that our family and friends were going to act
differently around him. I was afraid that all they would notice was his
slanted eyes or the extra skin on the back of his neck. Our family and
friends loved him just as they loved Dylan, Lexie, and Lily. The love
and support from them was amazing, and watching them love our special
boy brought tears to my eyes.
Everybody headed home, and Liam was taken away again. Once again, the
sadness hit when Liam was out of the room. I remember my two amazing
nurses coming in before the shift change to say goodbye. They both
wrapped their arms around me and assured me everything would be okay.
They were the first hospital personnel to even acknowledge our concerns.
We began the difficult task of telling our family and friends about Liam. Within a half hour of telling my mom group on Facebook, I received a message from another woman that had gone through the same thing. She was the one who gave us the most information, and I am so grateful for that. Nobody at the hospital would give us any information. Doctors, nurses, and the lactation consultant came and went, but I can't remember anything they said. Mostly, they said nothing. Apparently, they had to treat him like a typical baby until the blood test confirmed the diagnosis.
We began the difficult task of telling our family and friends about Liam. Within a half hour of telling my mom group on Facebook, I received a message from another woman that had gone through the same thing. She was the one who gave us the most information, and I am so grateful for that. Nobody at the hospital would give us any information. Doctors, nurses, and the lactation consultant came and went, but I can't remember anything they said. Mostly, they said nothing. Apparently, they had to treat him like a typical baby until the blood test confirmed the diagnosis.
It took 3 weeks for those results to come in. Every day I
called, and every day I was told they were having trouble getting an
accurate diagnosis. My husband began to worry that it was something more
serious and everybody who knew the about the suspected diagnosis was
anxious to hear the news.
When
Liam was nearly 3 weeks old, he had an appointment with his
pediatrician for a weight check. She asked if we received the test
results yet and I told her we were still waiting. She was LIVID. She
told me she was going to call them herself and demand results. Before
she left the room, she paused and asked, "Well, what do you think the
results are going to be?"
Without missing a beat, I told her, "I think he has Down syndrome."
Less than two hours later, my phone rang and we got the answer we were waiting for.
Liam's birth story was not an easy one to tell. There are quite a few things I wish I could change, but I would never want to change him. I honestly believe Grant and I were meant to receive such a special blessing. Even if we had known during my pregnancy, it wouldn't have changed anything.
Dylan, Lexie, and Lily's births were so special. Liam's birth was special, too. I remember the overwhelming feeling of joy when I met Dylan, Lexie, and Lily for the first time, but no matter how hard I try, I can't remember looking into their eyes for the first time.
The moment Liam's eyes met mine is seared into my mind forever. There are times when I close my eyes and the image is so vivid it makes me gasp. There are times when I try to relive the moment, and I can. It's just his face, illuminated by the only light in the room, and those big eyes staring into mine. That moment is so beautiful now. At the time, I failed to see his beauty. Now, his beauty is all I can see.
Liam changed our lives in so many ways. Liam challenged us to be better parents. He brought our family and friends closer. His birth brought so many amazing people into my life; people I never would have met if he didn't have Down syndrome. Liam made our lives better.
Every day, I thank God for giving Liam to me. He is a true gift and I am honored to be his mom. I wake up to his incredible smile every morning. He is joyful, determined, beautiful, captivating, and absolutely perfect. My love for this beautiful boy is immeasurable.
It has been over 2 1/2 years since Liam was born. What an incredible journey it has been!
When
we were given Liam's diagnosis, our future suddenly felt dreary. It
felt like a jail sentence. That was how I perceived life with Down
syndrome. Many people opt against going down the same path we are on
because they fear something they simply do not understand and they don't
want anything less than perfect.
The reality is this life is not the jail sentence I imagined it would be. We grew to understand what Down syndrome was
and we were able to let go of the fear. My life is now filled with most incredible
moments. It is exactly as I pictured it would be before Down syndrome played a role.
The absolute truth is life with Down syndrome is not really scary at all.
It's actually quite ordinary!
Our sweet Liam changed our lives. We truly are Downright Blessed!
If you would like to contribute your story to the Downright Blessed: Life with Down Syndrome series, please send an email to lexieloolilyboodylantoo@yahoo.com.
Tuesday, March 1, 2016
21 Acts of Kindness
Happy March, my friends!
March is full of so many great things to celebrate! St. Patrick's Day, the first day of Spring, and Easter are so near! But for my family, there's one more day to celebrate.
It's a day that I never imagined we would celebrate. It's a day I never imagined I could possibly embrace. It's a day that means so very much to my family: World Down Syndrome Day. It's a day we spend celebrating our sweet Liam and all of those who are rocking an extra chromosome!
Liam brightens each and every day with his contagious smile, unstoppable joy, and unconditional love. He truly loves like no other. People always tell me that he is so lucky to have us for his family, but really, it is the other way around. WE are so lucky to be loved by him. One simple hug from Liam can take your breath away and make time stand still for a few seconds.
Liam inspires us to be the best we can possibly be. He inspires us to always be kind and make people smile. I can't think of a better way to celebrate the gift of our incredible blessing than by spreading the love!
21 Acts of Kindness are on the agenda for the month of March! In honor of Liam, we will give 21 gifts of kindness in the days leading up to World Down Syndrome Day on March 21st.
After some brainstorming and reaching out for a few more ideas, we came up with a list of 21 Acts of Kindness. A few of our ideas include:
I won't be sharing the full list just yet, but you can follow along on Instagram or Facebook. I'll be posting about each act of kindness using #21ActsofKindnessforLiam. I printed out short notes to attach to each little gift and I had to include my favorite picture ever! I printed some with my Instagram account on them for acquaintances and some with #DownrightBlessed #DSAwareness on them for strangers. We can't wait to spread some joy!
The only thing I want to accomplish with these 21 Acts of Kindness is to make people smile! I am the lucky recipient of Liam's love every single day, and I just want to share it with the world!
Do you personally know someone who has Down syndrome? Have you ever participated in Acts of Kindness?
Don't forget to rock your crazy socks on March 21st for World Down Syndrome Day! It's a great way to get people talking about World Down Syndrome Day and get people to ask questions. Last year, family and friends, both near and far, rocked their socks for Liam using #Socks4Liam. If you want to participate, please feel free to tag me in a picture! We were blown away by all the pictures last year!
LET'S CONNECT!
TWITTER // FACEBOOK // INSTAGRAM // BLOGLOVIN // GOOGLE+ // PINTEREST
Linking up with Our Pretty Little Girls for Tuesday Talk!
March is full of so many great things to celebrate! St. Patrick's Day, the first day of Spring, and Easter are so near! But for my family, there's one more day to celebrate.
It's a day that I never imagined we would celebrate. It's a day I never imagined I could possibly embrace. It's a day that means so very much to my family: World Down Syndrome Day. It's a day we spend celebrating our sweet Liam and all of those who are rocking an extra chromosome!
Liam brightens each and every day with his contagious smile, unstoppable joy, and unconditional love. He truly loves like no other. People always tell me that he is so lucky to have us for his family, but really, it is the other way around. WE are so lucky to be loved by him. One simple hug from Liam can take your breath away and make time stand still for a few seconds.
Liam inspires us to be the best we can possibly be. He inspires us to always be kind and make people smile. I can't think of a better way to celebrate the gift of our incredible blessing than by spreading the love!
21 Acts of Kindness are on the agenda for the month of March! In honor of Liam, we will give 21 gifts of kindness in the days leading up to World Down Syndrome Day on March 21st.
After some brainstorming and reaching out for a few more ideas, we came up with a list of 21 Acts of Kindness. A few of our ideas include:
- Dropping off cookies for the staff at the local library, where Liam spends hours each week playing.
- Donating supplies to our local animal shelter.
- Passing out $1 activity packs to random kids who could use a good distraction.
- Hand out bubbles and sidewalk chalk at the park.
- Handing a small gift card to the person behind me at Starbucks.
- Making dinner for a friend and delivering it.
- Giving a small bouquet of flowers to a random stranger who looks like they could use some cheering up.
I won't be sharing the full list just yet, but you can follow along on Instagram or Facebook. I'll be posting about each act of kindness using #21ActsofKindnessforLiam. I printed out short notes to attach to each little gift and I had to include my favorite picture ever! I printed some with my Instagram account on them for acquaintances and some with #DownrightBlessed #DSAwareness on them for strangers. We can't wait to spread some joy!
The only thing I want to accomplish with these 21 Acts of Kindness is to make people smile! I am the lucky recipient of Liam's love every single day, and I just want to share it with the world!
Do you personally know someone who has Down syndrome? Have you ever participated in Acts of Kindness?
Don't forget to rock your crazy socks on March 21st for World Down Syndrome Day! It's a great way to get people talking about World Down Syndrome Day and get people to ask questions. Last year, family and friends, both near and far, rocked their socks for Liam using #Socks4Liam. If you want to participate, please feel free to tag me in a picture! We were blown away by all the pictures last year!
LET'S CONNECT!
TWITTER // FACEBOOK // INSTAGRAM // BLOGLOVIN // GOOGLE+ // PINTEREST
Linking up with Our Pretty Little Girls for Tuesday Talk!
Monday, March 23, 2015
3/21...A Day To Celebrate
3/21 is one of my favorite days of the year! It's the day my husband and I started dating (16 years ago!), it's the day that my nephew was miraculously brought back to life after a horrific car accident, it's my dear friend Steph's Birthday, and it's World Down Syndrome Day!
Two years ago, we didn't even know about World Down Syndrome Day. Now we celebrate the day and we celebrate Liam! We celebrate something we didn't even know we wanted in our lives until we were faced with it. We celebrate the boy who brightens our days! We celebrate ALL the beautiful people in the world!
Celebrating World Down Syndrome Day is a great way to bring awareness. Yes, most people are AWARE of Down Syndrome, but most people truly don't understand exactly what it is and have many misconceptions. I was one of those people! The most important thing to remember is that people who have Down Syndrome are more alike than they are different. World Down Syndrome Day is a great way to spread love and awareness!
We celebrated the day with some of our favorite DS families! A local high school student's senior project was organizing an event for children with Down Syndrome and their families. She came up with the idea for Dolly's Tea Party after meeting Liam's buddy, Dolly, who also has Down Syndrome. Emily did an amazing job, and we all had a fantastic time!
As soon as we arrived, the kids got to pick a princess or superhero costume, along with some accessories, and get dressed up. Once they were dressed up in a new costume, they could get their faces painted, and the girls could get manicures. After everybody was dressed up and ready to go, they had a fashion show. Of course, there was lots of playtime, too! The afternoon ended with a pizza party and a World Down Syndrome Day cake. As if that wasn't already enough, the kids got to take home their costumes and they each got a really nice sand bucket full of goodies!
It was a special afternoon full of special people. Truly, the dynamic is so different with this group. The room was filled with love, joy, and emotion. These kids are rocking their extra chromosomes and they are adored! Emily (and her mom!) did a great job organizing this event. I think it should be a yearly event. It made so many people happy! If Emily already has a heart THIS big, she's going to accomplish some amazing things in her life!!!
We said goodbye to our friends, some old, some new, and headed to the grocery store in costumes, face paint, mismatched socks, and lots of blue and yellow. I'm sure we were a sight to see!
We had just a few minutes of down time...
...then we continued the celebration! It was time to celebrate Steph's Birthday!!! 42 (or 21 according to the cake!) looks beautiful!
We had a great night with some of our favorite people!
I think Liam is a fan of 3/21, too!
After everyone left, we rocked our socks just a bit longer before saying goodnight. It was a beautiful day!
Thank you to everyone who rocked their socks for Liam and helped raise more awareness for Down Syndrome! The love and support was amazing and touched our hearts. We are so thankful for all of you!
Two years ago, we didn't even know about World Down Syndrome Day. Now we celebrate the day and we celebrate Liam! We celebrate something we didn't even know we wanted in our lives until we were faced with it. We celebrate the boy who brightens our days! We celebrate ALL the beautiful people in the world!
Celebrating World Down Syndrome Day is a great way to bring awareness. Yes, most people are AWARE of Down Syndrome, but most people truly don't understand exactly what it is and have many misconceptions. I was one of those people! The most important thing to remember is that people who have Down Syndrome are more alike than they are different. World Down Syndrome Day is a great way to spread love and awareness!
We celebrated the day with some of our favorite DS families! A local high school student's senior project was organizing an event for children with Down Syndrome and their families. She came up with the idea for Dolly's Tea Party after meeting Liam's buddy, Dolly, who also has Down Syndrome. Emily did an amazing job, and we all had a fantastic time!
As soon as we arrived, the kids got to pick a princess or superhero costume, along with some accessories, and get dressed up. Once they were dressed up in a new costume, they could get their faces painted, and the girls could get manicures. After everybody was dressed up and ready to go, they had a fashion show. Of course, there was lots of playtime, too! The afternoon ended with a pizza party and a World Down Syndrome Day cake. As if that wasn't already enough, the kids got to take home their costumes and they each got a really nice sand bucket full of goodies!
It was a special afternoon full of special people. Truly, the dynamic is so different with this group. The room was filled with love, joy, and emotion. These kids are rocking their extra chromosomes and they are adored! Emily (and her mom!) did a great job organizing this event. I think it should be a yearly event. It made so many people happy! If Emily already has a heart THIS big, she's going to accomplish some amazing things in her life!!!
We said goodbye to our friends, some old, some new, and headed to the grocery store in costumes, face paint, mismatched socks, and lots of blue and yellow. I'm sure we were a sight to see!
We had just a few minutes of down time...
...then we continued the celebration! It was time to celebrate Steph's Birthday!!! 42 (or 21 according to the cake!) looks beautiful!
We had a great night with some of our favorite people!
I think Liam is a fan of 3/21, too!
After everyone left, we rocked our socks just a bit longer before saying goodnight. It was a beautiful day!
Thank you to everyone who rocked their socks for Liam and helped raise more awareness for Down Syndrome! The love and support was amazing and touched our hearts. We are so thankful for all of you!
