Today is the first day of October, so you know what that means? It’s Down Syndrome Awareness Month! On our journey through the last 4 1/2 years, we have met an amazing number of truly beautiful people who have Down syndrome, the most common genetic condition in the United States. These children and adults are changing what it looks like to have Down syndrome, and the world is taking notice. Through the next 31 days, I will be introducing you at least 31 of these individuals and their families. We’ll learn about their talents and hobbies, what they love and what they don’t like so much, who their favorite people are, how they would spend a day they design, and much more. Our hope is that you will see the beauty of each person’s individuality, because they may share a common extra chromosome, but that doesn’t make them copies of one another. Let’s celebrate uniqueness!
First up, I would like to introduce you to six-year-old Miss Zoey Grace! I met Zoey’s mom, Sasha, on Instagram and have so enjoyed following their family on Snapchat, as well. Zoey’s energy and imagination are super fun to watch! You can find them on Instagram at @itsabellazoey, Snapchat under sasharae513, on Facebook as @ZoeyGraceMabel and Twitter @itsa_bella_zoey.
What does Zoey Grace enjoy doing?
coloring, drawing, running down hills, playing barbies, watching YouTube, swinging, going to Cubbies, reenacting her favorite movies & music videos!
What are her favorite foods?
chicken fries, fruit, French fries, chips, most cooked vegetables
What are her favorite movies?
Frozen, The Jungle Book, Cinderella, Inside Out, The Peanuts Movie, Tangled, Zootopia, & Minions.
What are a few things she’s really good at?
Drawing, coloring, writing her name, imaginative play, reenacting the song scenes from Frozen, running, spotting her favorite characters (Disney, movie, cartoon, etc.) on anything – anywhere!
If Zoey could design her own day, what would she do?
She’d go to Disneyland! Lately she’s pretty obsessed with the idea of Disneyland and we’re hoping we can make that happen soon!
Who does she love spending time with?
Daddy! She’s a big time daddy’s girl and would prefer him over anyone else! She also loves spending time with her sister & brothers … she loves it when any of us will play with her!!
What is something you want everyone to know about your daughter?
I want everyone to know that I wouldn’t want Zoey to be any different than she is! She is not a burden, she is not “less than” anyone else – she is an equal! Having Down syndrome is just a part of who she is (and a part I would absolutely choose, because man is that extra chromosome amazing!) but above all she’s just a little girl!
What is the most wonderful part of knowing Zoey?
The most wonderful part of knowing Zoey is seeing life through her eyes. She finds so much joy in life – and that joy is contagious! I love seeing how she shines and can brighten almost anyone’s day!! I love the things she says that make me laugh. I love how she sometimes gets sassy and suddenly she’s gone from shy to assertive! I love her smile, her giggle, and the way she thinks adding the word “butt” to a sentence is hilarious (& at times, possibly a good tactic to keeping me from videoing her)! I love her for everything she is and all the love she has brought to our family!
What has been a good resource for you as a parent of a child with Down syndrome?
The best resource I’ve found is the community of parents who also have children with Down syndrome – instagram has been instrumental in me finding this community!
Thank you, Sasha, for sharing your beautiful Zoey Grace with us today! Friends, be sure to check back again every day this month as we celebrate Down Syndrome Awareness Month!
Click below to read all of our posts celebrating Down Syndrome Awareness Month!
Sammy’s Superheroes joined forces for the fourth year in a row earlier this month at the Step Up for Down Syndrome Walk! We gathered with a whole lot of our friends in Duluth to celebrate and spread awareness of the awesomeness of those we love who have Down syndrome.
Little Sammy had a pretty great Superman costume (complete with puffy muscles) that he absolutely refused to wear the morning of the walk. Oh well, at least I had his official shirt as a backup!
My sister Jenny was among our team members this year, along with her kids. We lost count of how many times these two went down the slide together. Sam insisted every time they reached the bottom that they do it again. Jenny got a good workout that day.
I’m so sad that this may be the only group photo we have this year. I need to see if the event photographer has one. Every other year we’ve captured a great one of almost all of Sammy’s Superheroes. Boo.
This is Sam’s future girl, though, let’s be honest, he does have a few others in line, as well. Rauri’s mama, Alexa, was one of my students years ago when I was student teaching in a nearby high school. We reconnected when I saw her post in our local Down syndrome family group just over a year ago while she was still pregnant. Rauri is going to move mountains with her amazing mom cheering her on! But seriously, see how they’re looking at each other? Swoon.
Ella was thrilled to push our friend’s little girl once it was time for the walk. This girl is mother hen through and through.
Raise your hand if you’re ready to walk!
So many great friends and role models to catch up with during the walk. I can’t tell you how amazing it is to have parents to watch and talk to who are a bit further along on this parenting journey.
After we completed the actual walk portion of the event, it was time to play! Superman took off after his Supergirl.
She was flying!
And they both went sliding. What a good sport, Daddy-o.
Toward the end of the walk, when things had quieted down a bit, Sam made a new friend.
The two of them sat for quite a while, mimicking one another and playing. Sam was amazed by this gigantic yellow jacket. And honestly, so was I. I know the mascots are typically college students who are obligated to attend these events and probably put up with a lot of crazy kids being a bit too rough with them. But even after all that, this UW-Superior Yellowjacket sat down on the track with my boy and gave him undivided attention. I know, I know, it seems like a little thing, but in that moment, and now looking back on it, it was really special. So yes, I’m thankful to that ginormous bee (more so the awesome student inside that costume) and the moment they created with my Sammy.
Will we be at the walk next year? Not in Minnesota, but maybe we’ll hold our own at Tenwek Hospital! I know a bunch of little boys over there who love to dress as superheroes, so I think Sammy will likely have a brand new squad in Kenya. When it happens, I’ll be sure to get a group photo. 🙂
Four years ago this week I wrote a post that marked a significant turning point for our family. I remember wondering how we would share the unexpected news of our baby boy’s arrival in a way that could include all the beautiful parts of meeting him, the deep love and protection we immediately felt for him and the sincere trust we continued to have in our Heavenly Father. In Sam’s first two days, we called family and close friends to tell them the news. A simple It’s a BOY! message along with his name and stats was posted on Facebook, but no pictures accompanied it. Pete and I both needed time to process. And then, just before leaving the hospital while Sam stayed in the NICU, the words came. Without question, that was the day I was most thankful to have a blog. We could share the full story, all of our thoughts and emotions, along with photos of our beautiful boy. We wouldn’t need to repeat the story over and over and all details would be articulated. With a single click of the publish button, we shared our precious boy with the world.
I will always treasure the words I wrote in the quietness of my hospital room. All the fresh feelings of love and surprise and joy. It was the beginning of a journey I didn’t expect but am now incredibly thankful to be on. I can’t imagine life without the events of that night four years ago.
So again, four years later, I want to share those words along with a few more photos and follow-up notes. These are the words that introduced our Samuel with the world.
Saturday, May 26, 2012
Things first began on Tuesday night (May 22) when I crawled into bed at about 10pm and I began to feel small contractions. They didn’t really catch my attention, though, since I had been feeling Braxton Hicks contractions (a sort of fake contraction) for about 15 weeks. A few of them did wake me during the night, though. On Wednesday morning I decided to go about my regular schedule and see what happened. While shopping at Target for a few last items for my hospital bag, I had to stop multiple times to lean on my cart and let a contraction pass. In the afternoon, Ella & I went to Becky’s to watch Malena & Maira while Becky went to the dentist. At that time, the contractions continued to strengthen and were only about 4 minutes apart. Let me tell you, it was not comfortable having the three little girls crawling all over me while the contractions hit. But it kept me somewhat distracted! After Becky got home, I paged Pete out of surgery, telling him things were getting more intense. I drove the 10 minutes to the hospital (perhaps I should not have been driving at that point, but I wasn’t completely convinced I was in labor) and let Pete drive me home. The beauty of being married to a doctor is that he was able to check my progress while we were home. Much to my relief, he confirmed that I surely was in labor and had made it to about 5cm. Yay! We took our time gathering the last things for the hospital and headed in.
After a brief stop at the store to pick up a plant (so nice to have in the room during labor) and a magazine (to fill the time during labor before the actual delivery), we arrived at the hospital at 7pm. I was definitely needing to breathe through the contractions at that point and even got to ride in a wheelchair to the OB floor. I dropped off the cupcakes I had made that afternoon for the nurses and settled into my room. I have to tell you that from the very moment I got to the room, I asked if an order could be put in for an epidural. I’ve never felt that I’m a mama who needs to go without meds, and I was worried we would miss the window if we didn’t get going on it. Shortly after that, Pete checked me again and I was between 7 and 8cm. Things were moving fast! Before 9pm…and before I was given an epidural…I hit the complete 10cm and my window for meds was closed. I have to honestly say that I wasn’t excited when I was told I would have to deliver without meds. It scared me, and I really wondered if I would be able to handle the pain. With Ella, I never made it past 6cm and, therefore, never got to push at all. The opportunity for a VBAC had come, and that did make me happy. I wanted to have the experience of pushing and breathing and being coached by Pete. I wanted to have a chance to push a baby into the world the way women have been doing it for years and years and years.
And push I did. For 2 1/2 hours I pushed. Without meds. That was a lot of work! I really focused on putting all of my energy into the pushing, not yelling or crying or cursing out my husband, as I’ve heard can easily happen. Instead, I felt incredibly close to Pete through the whole experience. He was an amazing coach. When I was discouraged, he looked right into my eyes and reassured me. I found a lot of strength in that. I also found myself talking to Jesus between contractions and pushing. I know He was giving me a great deal of strength. Everything looked like it was going well until we reached the 2 1/2 hour mark. Then our little one started to show signs of dropping oxygen levels and my cervix began to swell a great deal, to the point that it looked like it may actually be closing again. Pete & I jointly made the decision to do a c-section for the protection of the baby. I was taken down the elevator on a bed, groaning the entire way as super strong contractions ripped through me.
Though I ended up in another c-section, the entire experience was far different than when I had Ella. This time I completely dilated, pushed for a long time, tried many different positions, and really gave it everything I had. I got to experience everything I wanted to with child birth. It was time to get our baby out while he or she was still doing okay. So that’s what we did.
My mom made it to the hospital just in time to join us in the OR for the section. Pete stood next to me the entire time, looking over the sheet for the moment our little one would enter the world. I felt great peace in those moments before the birth. I was able to pray for the doctors in the room before the section began (most of whom I knew from the residency) and hummed one of my favorite camp songs about seeking Jesus’ face. Everything was perfect as I excitedly awaited the announcement of our little one’s arrival. And then it came! Pete proclaimed, “It’s a boy!” and we were both ecstatic as images of my dear Pete with his long-awaited son filled my head. I announced to all present that our son’s name would be Samuel Thomas Amani Olsen as I held back tears of joy. And then I realized how quiet the room was.
The doctors – our friends – huddled around our Samuel on the warming table while I heard only a small, weak, peep of a cry. It was a tiny sound. Though I felt peace, not concern, I asked one of the doctors to take a small step to the side so I could get my first glimpse of our little one. And that’s when I saw the first sign. His body wasn’t clenched like Ella had been when she was born. Sam’s arms were floppy. I asked Pete to bring him closer so I could see him. I longed for the first real view of my son. When Pete held him close, Samuel opened his eyes and looked right at me. And it was in that tiny instant that I knew it in my heart. Was it my mama instinct? Was it the fact that I had been carrying this beautiful little boy inside me for so many months prior to this moment of introduction? I don’t know, but it was instantly clear to me. Our little Samuel has Down syndrome.
I was wheeled into the recovery room while Pete and my mom and the other doctors took Sam up to the NICU to give him a complete exam. I don’t know how much time passed before Pete and my doctor, Maria, came through the door, quiet and serious. My thoughts were confirmed in that moment. In an instant, many things changed. But in that same instant, many things were peacefully confirmed within me. God is good. God has a plan. God created our little Samuel, and we were chosen to be his parents. What an honor.
The last 2 1/2 days have been the beginning of journey down what a doctor recognized yesterday as our “new normal.” Samuel remains in the NICU while he works through the transition from the warm, safe place of my womb to the outside world. His oxygen levels have needed the most time to adjust. He was most comfortable in a warm incubator without much handling the first 24 hours. We haven’t been able to have him in our room. We haven’t changed any of his diapers. And I just got the all-clear to try nursing him. So far he’s been getting my pumped milk through a feeding tube in his nose. Each little step he’s made forward, we’ve celebrated. Late last night, Pete sat with me as I held him on my chest. His sweet little eyes looked up at me a few times, completely melting every ounce of my heart. Pete held him for a little while, too, and Samuel eventually fell asleep cuddled with his daddy. It was so hard to leave him in the NICU to return to our room. There will soon come a time when we won’t have to leave him for a single moment. We’re praying that the time comes very, very soon.
I’m now packing and getting ready to head home…without my sweet little boy. First we’ll try nursing, though. Pete & I will both be back very often to rock Sammy and I’ll nurse him. Miss Ella is excited to see him, too. We tried having her visit him in the NICU two days ago, but it was all a bit too much for her. We’re praying Samuel will be discharged on Monday or Tuesday, though we have to keep a very open hand about that in case anything unexpected pops up.
Please pray with us for our little Samuel. Pray that his oxygen levels will get to a good place so he can breathe all on his own. Pray that he will quickly adapt to nursing. Pray that he’ll get to be home with us in the next few days. And please pray for Pete and I as we learn what this new beginning will entail and how all of this will draw us forward. Thank you!!
In the end, Sam spent two full weeks in the NICU. In that time, we continued to try to nurse, but his little jaw just wasn’t strong enough and there were so many distractions from the alarms and cords and other babies. (At that time, the NICU was a large, open space with 18 tiny babies. A year later, Sam & I attended the opening of the brand new, very private, NICU!) After 24 hours breathing successfully on his own, Sam came home. In the peace of his own room, we worked on nursing a little bit every day. A week later, he latched on and at seven weeks he had his first full feeding. After that, he was pretty much an eating champ! That was the first time he showed us his determination on his own timeline. Countless times since then, he has worked and worked and worked on a skill and eventually mastered it with great success. Sitting, clapping, crawling, and now he’s nearly walking. This darling boy has surely changed our pace of parenting and expectations. I think it’s safe to say he was born to be spectacular!
When our Samuel was born nearly four years ago, we became a part of a family we hadn’t really known existed. We were introduced slowly in the first weeks following his birth, but a few months later, we were fully immersed. Our Down syndrome family has become an incredibly important part of who I am as a mom. I rely on the support and wisdom of those who are ahead of me on this journey, and I walk through daily routines and celebrations with those who are at this same place. We really do live life together through the magic of Instagram and blogs and Facebook. Because we are walking a unique, challenging, wonderful journey together, we are very tightly knit. Many of us have never met face-to-face, but we really do feel as close as family. Because of this, when something happens to a part of our family, we are all effected in some way. Sometimes that means we celebrate and shout for joy together. And sometimes that means we cry and grieve together.
Nearly two weeks ago, our Down syndrome family received devastating news. After fighting a sudden illness, our dear Nicholas Love passed away. Four year-old Nic, with the brightest smile and the sweetest little Australian-accented voice. Through Instagram and his mum’s blog, Mumma-Love.com, I got to know Nic and Annie. Nic was only a couple months older than our Sam. When they were younger, I always thought they looked like they could be brothers. Annie was one of the very first mamas I found on Instagram. She’s a part what I consider to be my core group on this parenting journey.
I’m sad our boys didn’t get a chance to meet. And I’m absolutely heartbroken for Nic’s dear family. But I know Nic touched so many lives. And that will not be forgotten. He will not be forgotten. Darling Nicholas, you will forever be in our hearts.
Today is a day I adore being on social media. My feeds are flooded with the beautiful faces and incredible stories of those who have Down syndrome and their families. I’ll be honest – I didn’t get the Monday house cleaning finished today since I was scrolling through Facebook and Instagram every five minutes. It was so worth it! My floors can stay sticky till tomorrow. Today we’re celebrating!
Yesterday, I swung into Target with the kids to make sure we each had a fun pair of socks to wear today. We rock our socks for Down syndrome awareness for a couple reasons. One, when other people ask about our spectacular footwear, we tell them about the significance of the day. Two, wild socks are unique and awesome, just like people with Down syndrome! And three, if you put two socks back to back with the heels touching, they kind of make an X. That’s the shape of a typical chromosome. Down syndrome happens when there is an extra copy of the 21st chromosome. Fun, huh?! Sam picked checkered socks (which he keeps showing me today) and Ella picked out a very cool pair of knee-high, bright pink, sparkly socks. I’ve been saving a pair of wildly swirly socks just for this occasion, so I was already set. This morning we took quick photos before the kids were off to school. What do you think??
After dinner last night, Ella helped me put together treat bags for their teachers and bus drivers, as well as a few other friends. Sam helped. Or at least ate marshmallows near us.
I had a lot of time driving back from my sweet cousin’s wedding earlier in the day, so I had time to think through ideas of what I wanted to say on the treat bag topper. Once the kids were in bed, I created the topper and stuck it to the bags. The back had various facts and thoughts about Down syndrome. Tada! A perfect little way to celebrate the day.
Tonight we’ll be driving up over the hill to see the city light Enger Tower in blue and yellow for World Down Syndrome Day! Everyone will be able to see it! I’m going to be teary. I’m just putting that out there now since it’s inevitable. 🙂
Happy World Down Syndrome Day!!
If you would like to learn more about Down syndrome, here are a few places you can click.
Will you help us celebrate our amazing boy & all people with Down syndrome on Monday? It’s easy and fun to do! Wear a pair of mismatched or wild socks, and when people ask about them tell them it’s a World Down Syndrome Day!
