FREE books to celebrate down syndrome awareness month!

A few months ago I asked myself: What is something new I can do to help promote Down syndrome Awareness, inclusion, and community engagement?

Last year I self-published the children’s book I Am Me. About the book: A heartfelt and honest work that acts as a mantra of sorts for anyone and everyone, but especially for individuals who are “different” in society’s eyes. Children, parents, friends, and family of individuals with Down syndrome (or any human being) need not be afraid of the unknown or the different because we are all amazing, super, and created as who we are meant to be. It’s all about appreciating diversity AND celebrating it!

I Am Me is available for purchase on my website, Amazon, in other book retailers upon request, as well as Poppin Huis, in Holland, MI. In addition to retail sales, I put in the effort to connect with organizations like Jack’s Basket and Down syndrome Associations around the country to provide discounted books for use in celebration baskets, donor thank you gifts, and fundraising efforts.

As Super Jay Brand promises, for every book sold a donation is made to an organization that supports the Down syndrome community. In my local area, I make donations to the Down Syndrome Association of West Michigan (DSAWM). Donations have also been made to Down Syndrome Diagnosis Network (DSDN) and the National Association for Down Syndrome (NADS). In 2019, books sales and other Super Jay products allowed us to donate $1,502.28. So far in 2020, donations are topping $3,000!

How many books have I sold? As of October 16, 2020, 1,494 I Am Me books have been purchased, with just under 1,200 of those books sold in bulk at discounted pricing. I am so grateful and thankful for the love I Am Me has received. Self-publishing is a hard process, but with hard work and perseverance, and a willingness to reach out to people I don’t know to make new connections and share the message of I Am Me, I have accomplished more than I ever imagined, and there’s more to come!

How do I get I Am Me in more hands? This year I wanted to give back on a bigger level. With a few of those outreach connections I made in an effort to share I Am Me over the last year, I was introduced to a new friend with personal ties to the Red Glasses Movement. In conversations with this fellow parent in the Down syndrome community, I mentioned that I really wanted to be able to offer books for free in celebration of World Down syndrome Awareness Month. A few weeks later I was asked to submit a grant proposal!

With support from the Jandernoa Foundation, I gave away 224 I Am Me books for FREE to teachers, classrooms, and parents around the USA in October 2020!

Free book promotion October 2020

These free books were accompanied by a reading guide (download below) and an informational postcard. Recipients were asked to provide a picture or share a note about their experience reading and sharing I Am Me.

Thank you to the Jandernoa’s for their support, encouragement, and belief in the power of a book to advocate for inclusion, community, and self-efficacy.

“You are you and I am me, just exactly how life is meant to be.”

What’s next? Maybe a new book … I’ll keep you posted!

“Thank you so much for the wonderful books you donated to our first grade students! They absolutely loved them and it was cute to watch them read along. Perfect level for a first grade shared reading. I really enjoyed your guided questions and suggested follow up activities too!” – Ms. Noel, Coopersville Area Public Schools 

Honeybee

Edited and final:

Honeybee

I saw a little  honeybee, flying near a tree.

He zoomed around in circles and landed on my knee.

You might scream or run away, or maybe you would freeze,

but I sat calmly as I watched and felt the evening breeze.

“Hello, young bee,” I said to him.  “You’ve had a busy day.

It’s good that you can stop and rest. You’ve come a long, long way.

You’ve soared for miles through the air, for many days and hours,

collecting sticky pollen, while dancing with the flowers.”

His big eyes gazed into my own, and then he flew away.

I wondered if he’d fly around and come again someday?

I wondered if he flew through rain or felt the summer’s heat. 

I wondered if he wove through cars while traveling down the street?

Does he stop to watch the children and pause his beating wings?

Does he listen to the music as a feathered sparrow sings?   

The honeybee was out of sight, no longer could I see

my little friend who paused awhile to rest upon my knee.

But when I reached into my sack to grab a bite to eat,

between my sandwich was a spread of honey, smooth and sweet.  

I realized a simple truth I hadn’t know before—

I gave the bee a chance to rest, but he gave me much more.

He gave me honey for my bread, I gave him space to be.

That was just enough for him, and it’s enough for me.

In production —

I saw a little bumblebee, flying high, up near a tree.

Soon he zoomed down toward me and landed here upon my knee.

You might scream, or run, or freeze, but I felt as calm as the evening breeze.

“Hello young bee,” I said quietly as he buzzed upon my knee.

He was resting, I could see, tired from his long journey.

Soaring miles through the sky, dancing along flowers as he flew by.

Collecting all that wondrous stuff, sticky pollen smooth and tough.

Bumblebee, buzzing bee, sitting here upon my knee. Soon he was looking up at me.

His big eyes gazed deep into my own, and then he was off and flying home.

I am left to wonder, where? How far he flew, from here to there?

A journey through wind and natural struggles, and cars and bikes, and playful bubbles. 

Over hills and through lush green forests, a morning flight and an all-day chorus—of wings fluttering with such speed and need, in search for gold without greed.

I watched his journey through the sky, with a curious and patient eye.

For inside the bag there with me was a sandwich made with fresh honey.

I smiled to myself and nodded to the night—my bee no longer visible, out of sight.

But now I see something more, something I did not realize before.

That buzzing bumblebee that rested here upon my knee, gave me the honey nestled between this bread, spread so generously.  

And all I did was allow him to rest a moment upon my knee.

I did not scream, or run, or freeze, for he just needed a perch at ease.

That little buzzing bumblebee that landed here and sat with me.

He gave me this honey, and I gave him space to be.

That was enough for him and it was enough for me.

I Am Me – Team Super Jay

Each year, Down syndrome Associations across the country gather together members and the local community to celebrate and raise awareness. Super Jay Brand is committed to giving back annually.

Although we are not sure if this annual fundraising event will take place in person or virtually, we want to make sure we’re participating as best we can. We will use our voice and our actions to be agents of change and take action for the common good. You are meant to be. I am meant to be. We are meant to be!

This shirt design promotes love, inclusion, community, and self-efficacy. All proceeds will be donated to DSAWM’s (Down syndrome Association of West Michigan) 2020 Step Up for Down syndrome fundraising event.

Buy your shirt today! Shop Here

Youth sizes $19.99 (Green or Grey) | Adult sizes $22.99 (Teal or Grey)

One in a Million Award(s)

Super Jay Brand is part of the One in a Million movement by Multiplying Good x2! Check out the award for the book I Am Me and the award for Masks with a Mission.

About the awards: For nearly fifty years, Multiplying Good has lived the power of creating positive change through helping others and recognizing the extraordinary. It is time to celebrate every good act – from the medical personnel, first responders and essential workers to the teachers and caregivers to the millions helping in any way they can. Now more than ever, innumerable acts of bravery, generosity and good are giving us hope and bringing us together.

“You are you and I am me, just exactly how life is meant to be.” #IAmMeMeantToBe #SuperJayBrand

2020 Reading List

With all that is happening in the world at this moment in time, I find myself looking to the comfort of a book to imagine, explore, and pull myself out of my day-to-day more and more. Maybe you feel the same, maybe you don’t. Regardless, I want to share a running list of the books I read in 2020 starting from the most recent:

  1. Defending Jacob by William Landay
  2. I Am Watching You by Teresa Driscoll
  3. The Other Einstein by Marie Benedict
  4. The Sisters Cafe by Carolyn Brown
  5. House Rules by Jodi Picoult
  6. The Vanishing Half: A Novel by Brit Bennett
  7. Before We Were Yours by Lisa Wingate
  8. In the Unlikely Event by Judy Blume
  9. The Nickel Boys by Colson Whitehead
  10. My Time Among the Whites by Jennine Capo Crucet
  11. The Light We Lost by Jill Santopolo
  12. The Girls by Emma Cline
  13. The Murmur of Bees by Sofia Segovia
  14. The Ragged Edge of Night by Olivia Hawker
  15. Where The Crawdads Sing by Delia Owens
  16. The Girls of Atomic City: The Untold Story of the Women Who Helped Win World War II by Denise Kiernan
  17. Monday’s Not Coming by Tiffany D. Jackson
  18. Lost Children Archive by Valeria Luiselli
  19. Trail of Broken Wings by Sejal Badani
  20. Breaking Dawn by Stephenie Meyer
  21. Eclipse by Stephenie Meyer
  22. New Moon by Stephenie Meyer
  23. Twilight by Stephenie Meyer
  24. Digging In by Loretta Nyhan
  25. We Were the Lucky Ones by Georgia Hunter
  26. The Dancing Girls by M. M. Chouinard
  27. Too Late by Colleen Hoover
  28. The Lullaby Sky by Carolyn Brown
  29. Verity by Colleen Hoover
  30. Harry Potter and the Deathly Hallows
  31. Harry Potter and the Half-Blood Prince
  32. Harry Potter and the Order of the Phoenix
  33. You Matter by Matthew Emerzian
  34. Harry Potter and the Goblet of Fire – Illustrated
  35. One for the Blackbird, One for the Crow by Olivia Hawker
  36. Harry Potter and the Prisoner of Azkaban – Illustrated
  37. Harry Potter and the Chamber of Secrets – Illustrated
  38. Harry Potter and the Sorcerer’s Stone – Illustrated
  39. The Dressmaker’s Gift by Fiona Valpy
  40. When We Believed in Mermaids by Barbara O’Neil
  41. If You Tell by Gregg Olsen

Keep reading! If your kids are in need of a book, please consider adding I Am Me to their reading list. Click above and select Buy Now for USA shipping. International orders look to Amazon.

Locked Out

In the moment, something unexpected feels heavy, scary, and stressful. We undergo a rainbow of emotions, a plethora of thoughts, and seconds or minutes of total blankness. But when the episode is over and the fog thins, there’s little left to do but breathe, laugh, and love.

Like any other day, the day of the lock out was a busy morning in my house. Jay and I had the day off (I wanted to use up some PTO time) and we were planning on a lot of book reading, hide-and-go-seek playing, and movie soundtrack dancing.

“Momma,” Jay said from his room. “Momma, Hi!” His morning greeting is consistent. After getting dressed, brushing teeth, combing hair, and letting our dog Nola outside to do her thing, Jay and I made our way to the kitchen to get a pot of coffee going for me, and a warm milk going for him.

Reaching into the fridge for whole milk for Jay, I noticed my bowl of blueberries looking a little sad. After fixing Jay his breakfast, I decided to whip up a small batch of blueberry sauce for later use on pancakes and such. I’d rather not waste fresh fruit if I can help it!

Somehow I managed to burn my blueberry sauce. Instead of throwing it away or pouring it down the garbage disposal, I decided to step outside and dump it in the woods behind our house. It is winter in Michigan, but on this day the deck was snow free, even if the lawn wasn’t. I opened the sliding glass door and stepped out into the chilly winter morning with the burned blueberry sauce pan in hand. As it was just going to be a quick 5 steps to the railing, dump and scoop out the rest with a wooden spoon, and 5 steps back to the door, I didn’t put on shoes or a coat or a hat.

In the seconds it took me to dump the sauce and get back to the sliding glass door, Mr. Jay somehow slid the door closed and pushed the lever down to lock. At first I thought I simply wasn’t pulling hard enough. And then I saw it, the lever was in down position. It hit me. I got locked out by my toddler!

Jay, waving and smiling at me through the glass, had no idea why mom was still standing outside. I thought, I must get Jay to push that lever back up to unlock the door. I did a lot of pointing, pulling, pushing trying to show him what I needed him to do. Jay mimicked me a few times, but never on the actual lever. I tried this tactic for a while and it felt like hours, although it was really only minutes.

What now? All other doors and windows to the house were locked per usual. I watched a few cars go by and then I decided to try to get someone to stop so I could use their phone.

First I ran to the neighbors house because I saw a car in their driveway. Bzz-ring, Bzz-ring. Woof! Woof! Wait. No answer at the door. As I am turning away to run back home, I see a truck. I run towards it with my arms waving frantically, yelling “Stop! Stop!”

The driver, a man, slows, rolls down the window and looks at me. “Can I use your phone? I got locked out of my house and my toddler is in there!” He smiled, “Sure, that happened to my wife once.” Mind you, I’m standing in the middle of the street, no coat, no shoes, in wet muddy socks from running through the still snow-covered yard. He dials 911 and hands me his phone.

A quick conversation with the operator and an officer was being dispatched to the house. “Thank you,” I said to the operator. “May I try my husband quick?” I dialed Ben’s number, no answer. I get it, it isn’t a number he recognizes, and with so many robo-spam calls happening lately, it didn’t surprise me that he didn’t answer. I did leave a somewhat frantic voicemail though.

I thanked the man driving the truck who stopped to help me and I ran back to the house to the sliding door to check on Jay. He was standing right where I left him, waving and smiling at me when I came back into view.

What now? I still couldn’t stand not being able to get inside to Jay, and I wasn’t sure how long it would take for the officer to arrive. So, I tried using the frying pan sans blueberry sauce to break the glass of the garage service door window. Ben and I had the door installed when we moved in just 3 years ago; double-pane, tempered glass.

I dented the frying pan. Some 10 swings later, I somehow managed to jam my thumb but got the first layer of glass to crack. At this point, the officer was on scene. Fun fact, police officers do not have lock kits, at least ours don’t. In the future, contacting a locksmith might be the best option. 

The officer tried shattering out the glass with his flashlight. “Wow, these are some windows,” he said when he couldn’t break through either. Just then, a second officer walked up the driveway. I went round back again to check on Jay and he was still just standing and looking out the sliding door.

The first officer did a walk around the house to check for other possible points of entry. We live in a fortress! Which, in hindsight is comforting, but so very frustrating in the moment. The officer did notice the keypad basement door and I had forgotten about that. Bonus, the storm door was unlocked, so if I remembered the keypad code, we’d be in!

I remembered the code. Nola started frantically barking and I ran back around the house to the sliding door to try to get her to stop or at least let her know the intruders were there for a reason.

I could see Jay and his lip was starting to tremble. “Momma,” he said as he looked at me through the glass. “It’s OK Jay, I’m here. It’s OK. Do you want to see a song? Let’s sing a song.” For how locked down our house is, it certainly isn’t sound proof!

Singing with him through the glass, I was so close to Jay and yet, I still couldn’t get to him. Helplessness is a horrible, gut-wrenching feeling. He was totally fine though and not in any danger; he was just inside the house alone and I was stuck outside looking in.

With both officers in the basement, we had a good chance of getting to Jay. But Ben and I always keep the door to the basement locked from our main living area. An extra precaution. You can never be too safe! But the officers were thwarted yet again, they made it into the house, but we still couldn’t get to Jay.

“Have you been able to get a hold of your husband? Where does he work?” one of the officers came out to ask me. I said I tried using the man’s phone but he didn’t answer before. I also said he works about 40 minutes away. “Oh,” they said. “Here, try him again.” Ring. Ring. Voicemail. Another slightly more restrained, but still frantic message.

Because I’d already cracked the garage service door pretty good, the officers ended up breaking that window after multiple tries. To get through, they ended up using a shovel they normally use to help stranded cars during snow storms. I saw the officers walk into the house while standing at the sliding door. I saw Jameson wave at them. One of the officers opened the sliding door and I rushed in.

“Hi,” Jameson said, totally unaware of the epic 45 minutes that had just occurred. I instantly hugged the closest officer and let out a heavy sob as tears began to fall. “You’re alright, it’s alright, it happens more than you’d think,” they said. “We’ll need to see your ID,” said the other officer.

“Now what do you need to do this afternoon?” said the officer whom I hugged so intensely. “Clean up all that glass,” I said. They nodded, “Yes, but I meant get a key somewhere or to someone who can help you if this ever happens again.” Valid point officer. “Yes, right, of course!”

“Jay can you tell them thank you?” I asked as the officers prepared to leave. Jay signed thank you and gave them a big smile and wave. As soon as they were gone, I picked Jay up and snuggled into him on the couch. Tears started up again. He saw them, gently touched my cheeks and then leaned into me, letting me hold him until I was ready to let go.

That afternoon while Jay napped, I tackled the job of tempered glass cleanup and removal. I rigged a cardboard box with zipties and tape to cover the now open window. I swept, shoveled, and scooped.

It was a stressful and cold 45 minutes watching Jay smile, wave, knock, point, sing, and tear-up at me through the sliding glass door. I’ll remember it forever. I’m sure Jay’s already forgotten.

To top it off, it was gymnastics morning. Shortly after the whole ordeal, Jay and I jumped in the car and made our way to the gym. The weeks following our first week back have been smooth, thankfully. I needed to get out of the house and do something that felt normal. Jay had a great class and rocked on his side shuffles on the balance beam.

In short, the unexpected often begins with fear and anxiety, but by the time it’s all said and done, it’s a memory to look back on, learn from, and laugh over. We could all use a little of that.

Mommy and Me Gymnastics

Jameson is in a Mommy and Me gymnastics class that meets once a week for about 50 minutes. This is our second round in the class after taking the month of January off due to illness (Ben and I were down for the count but somehow Jameson stayed healthy!)

The first month in gymnastics went fairly well. Jameson tackled each new skill to the best of his ability, and more often than not, he surpassed my expectations. From walking on the balance beam to hanging from the uneven bar and holding a pike position, I figured we’ll give it a go but I didn’t think he’d be able to do many of the skills on his own. Golly, was I wrong! With a little support from the teacher and I, he managed most of the skills, if not all.

This particular Mommy and Me class incorporates stations with hand-eye coordination activities, sensory objects, and color matching, along with skills like a tuck jump on a trampoline, a backwards somersault over a foam cylinder, or a donkey kick station to try out a handstand ending in a stand up and “Ta-da” moment.

All of these activities from the floor, to the beam, to the sensory stations allow Jameson to challenge both his body and his mind. I can see his wheels turning when he’s asked to try something new. No one in the class assumes Jameson can’t, they all assume he can and give him the space to do.

If anyone thinks, I’m not so sure he can handle that, it’s me. And when that thought comes to mind, guilt quickly follows. Giving Jameson the freedom to try makes all the difference in the world, for him and for me.

The Mommy and Me class setup is both good and bad. I love being there to support Jay and guide him as needed, and corral him when he’s running to a different area of the gym, but sometimes I think he’d do even better if I weren’t there. You know the feeling … sometimes our kids act out for us more than they ever would for someone else.

It can be frustrating and exhausting, mentally draining, and sometimes embarrassing. At the class I am focused on Jameson more so than other times of the day. I am hypersensitive to his behavior, his mood, his willingness (or total disregard) to listen and follow directions, and how he interacts with the other kids, parents, and the teacher. I worry that he’s being disruptive and we’re distracting other kids when he’s rolling like a pinball away from me. I stress about how the other parents see me as a parent when I’m trying to calmly explain that we need to wait our turn but so frustrated I feel like I could burst. I wonder if the other kids in the class get upset when they have to wait a little longer to allow for Jay to tackle a skill. There’s a lot of comparing that takes place and it is so hard not to get bogged down in the “that little boy is the same age and he’s not making a break for it…”  

Fast forward to our first Thursday back to class after a month off. How did it go you ask? We left early and didn’t stay for free play! Jay was all over the place and my patience went from he’s a toddler to nonexistent.

The class started off fairly smooth, as most outings generally do. Jay joined in the opening stretch sequence and danced around to an upbeat animal song with the three other kids, their parents, myself, and the teacher. Then it was time for the floor portion of the class. A series of stations were set up and each kid/parent duo tasked with flowing through in order. This is how round one went … there are three rounds.

  • Skill one: Lie down on your back on the mat and roll into a ball, tuck in your chin and count to 5. Check! Jameson did that no problem.
  • Skill two: Push a small plastic rectangle across the floor with your hands and keep your knees off the ground. Sort of check … knees down, but the pushing motion was achieved! 
  • Skill three: Put your feet on the stars against the wall and lift your butt up off the ground. “Come on Jameson, look, here, watch mom, see, you can do it. …argh, Jay, Jameson!” We skipped this skill as he crawled with amazing speed toward the trampoline. 
  • Skill four: Tuck jumps on the trampoline and “freeze” with hands on knees. Check with a good bit of rolling around on the trampoline included. “Ok, it’s someone else’s turn. Jay, we have to move on. Jameson, come on honey! Jay!” as I took his hand and pulled him over to the next station. 
  • Skill five: Balance on one leg. Check while holding both of mom’s hands for balance support. 
  • Skill six: Follow the pattern on the floor. Jump and step legs out, jump feet together, jump feet out, jump feet together. Jameson’s version was more of a kick, pick up and throw the pattern, plop down and roll back to belly across the floor. I stood, took a deep breath, put the pattern back in place for the next kid, and went for his hand to pull him back to standing. He wriggled, fighting with me for what felt like minutes but what was likely only a few seconds. And of course, to me it felt like all eyes in the room were on us, over there in the middle of the floor making a scene. 
  • Skill seven: Cartwheel over a small rectangle box. I was able to get him to touch the box, but he wanted nothing else to do with it. 
  • Skill eight: Handstand against the wall with your hands resting on stars on the floor. Like a rocket, Jay made a b-line for the play area and tunnel. He’s so fast when he wants to be! I snatched his foot just before he disappeared inside. We didn’t even attempt a handstand. 

Round two … we tuck and rolled and managed the trampoline. Round three … a good amount of chasing ensued.

After the floor, the group moved to the balance beam area. Jameson rocked the big beam holding my hand and the teacher’s hand and walked one foot in front of the other from front to back. Balance is a tough skill. Walking one foot in front of the other is a tough skill. He made it through two rounds of beam pretty well but on the third round, he had had enough.

“The itsy bitsy spider …” I tried to sing to get his attention and refocus his energy. He sat and sang the song with me, doing the motions, and enjoying the focused attention. One of the other mom’s said, “He really likes music, huh?” I just smiled and tried to keep his attention. But it was short lived. As soon as the song ended, I tried to go into a verse of “head shoulders knees and toes” and he bolted, running to the other side of the room with me chasing after him yet again.

“Jay, honey,” I said as calmly as I could while pulling him into a hug. “Everyone is over there. Don’t you want to go on the beam again?” He signed all done and we wrestled as he fought to break free from me.

He rolled away and bumped his head on the play area wall. “Ouch” he said as he patted his head with his hand and I thought to myself, well I hope that hurt, settle down and pay attention! Do I feel bad for thinking that, hell yes. At the time, I just wanted him to settle down and sit still for a bit, and if a bonk on the head by his own doing did the trick, well so be it. Of course, it didn’t. No fear for Mr. Jameson!

By the time we got to the uneven bars, Jay and I had spent quite a bit of time fighting against one another – Jay for freedom to do as he wished and me trying to get him to participate in the class. Jay only sat still in the uneven bar area for a few seconds. When one of the other little ones jutted their arm out to try to stop Jay from crawling away, it set me over the edge.

I snatched him up, put on his coat and boots and booked it out of there without even saying goodbye to the other parents or the teacher. Then, I cried in the car. It was a moment where I felt overwhelmed and less-than in so many ways.

It was not my best. And, it certainly wasn’t Jay’s best moment either. But he had some wins in the class that I reflected on right then and there: the mat ball tuck your chin and count exercise, the balance beam walking front to back, the opening song participation, and the pure joy emitted from his every cell while in the space of the gym.

There’s a lot going on in there. Stations set up, mats, beams, bars, rings, hula hoops, rubber bands, a foam pit, a jungle gym, and play tunnels. And, Jay is a toddler! They run, crawl, wiggle, push limits, test, can be stubborn, etc.

Here’s something Mommy and Me gymnastics has taught me: Jameson is so much stronger than I ever realized. Physically and mentally. I cried when we left early because I felt so overwhelmed. Did Jay cry? Nope. Instead, in the car strapped into his car seat, he sat quietly and then I heard the softest, “Momma?” and when I looked back at him he gave me the biggest smile and stretched his arms out toward me as if to give me a hug.

He’s so in-tune with people. He observes and he loves fully. In that moment, he knew what I needed. I only hope he gets the same from me in his moments of need. <3

We’ll go to gymnastics again and I plan to stay for the whole thing regardless of how the experience makes me feel. The class is really meant for Jay: to learn, to interact with other kids, to take directions and listen or at least attempt to do so, to share, to get to know his own body and strength, to play and explore.

Is taking Jameson to a gymnastics class while not knowing how it will go an easy thing to do? No. But it is worth it. He’s learning and I’m learning. Together we’re trying new things, building our strength, and challenging one another to be better for ourselves and each other. Jameson is meant to be, and so am I. <3

A book reflection – tinkers

An insightful passage from tinkers, by Paul Harding. This is a book I picked up at Readers World Bookstore in Holland, MI. A Pulitzer Prize winner and amazingly brilliant read. A book, like some others, that I will surely read again and again and again and discover something new with each turn of a page.

“Your cold mornings are filled with the heartache about the fact that although we are not at ease in this world, it is all we have, that it is ours but that it is full of strife, so that all we can call our own is strife; but even that is better than nothing at all, isn’t it? … be comforted in the fact that the ache in your heart and the confusion in your soul means that you are still alive, still human, and still open to the beauty of the world, even though you have done nothing to deserve it. And when you resent the ache in your heart, remember: You will be dead and buried soon enough.”

My two cents: To read is to discover, to write is to uncover and disclose.

We are #MeantToBe and here together we are, in the grand scheme of all things, only for a short while. And so, I’ll try to catalog every laugh and every smile. The perfect present with want and need in one. Pulling back the paper piece by piece until my work in this world is done.

World Down Syndrome Day

World Down Syndrome Day (WDSD), March 21st, is a global awareness day which has been officially observed by the United Nations since 2012.

The date for WDSD is March 21 each year and selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

WDSD is a day to encourage friends all over the world to choose their own activities and events to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.

What can you do for World Down Syndrome Day?

  • WDSD deals 2020: The Classroom Bundle includes one signed copy of the book I Am Me and one handmade I Am Me Super Jay Doll for play and learning, as well as a FREE 2-page reading guide with discussion prompts and suggested activities to incorporate the I Am Me message in classrooms and at home. The Classroom Bundle ships in 2-3 weeks, so act now!
  • Talk about World Down Syndrome Day in your classroom, at work, and at home.
  • Read I Am Me and get students and kids talking about what makes them unique and how we’re all part of a shared community.
  • Wear brightly colored socks, long socks, printed socks, 1 sock… even 3 socks for 3 chromosomes. If you do not normally wear socks, wear them! Wear fun socks at home, nursery, school, college, university, work, play, travel, on holiday…wherever you will be on 21 March!

Take pictures of your classroom reading and discussing the book I Am Me and of your fun socks and share them on Social Media. Make sure you use the hashtags: #LotsOfSocks #WDSD20 #MeantToBe #IAmMe #SuperJayBrand

Instagram @IAmMeMeantToBe or Facebook @SuperJayBrand 


What is Down syndrome?

In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.

How is Down syndrome diagnosed?

Down syndrome is usually identified at birth by the presence of certain physical traits: low muscle tone, a single deep crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. Because these features may be present in babies without Down syndrome, a chromosomal analysis called a karyotype is done to confirm the diagnosis. To obtain a karyotype, doctors draw a blood sample to examine the baby’s cells. They photograph the chromosomes and then group them by size, number, and shape. By examining the karyotype, doctors can diagnose Down syndrome.

Another genetic test called FISH can apply similar principles and confirm a diagnosis in a shorter amount of time. Look at the picture of a karyotype below. Don’t those chromosomes look a bit like socks? That’s where #RockYourSocks for WDSD comes from!

Trisomy-21-Karyotype-Female-Copy-1.jpg

References

Read about how WDSD came about on the United Nations resolution page.

National Down Syndrome Society (NDSS): https://www.ndss.org/about-down-syndrome/down-syndrome/ 

World Down Syndrome Day: https://www.worlddownsyndromeday2.org/

Our Diagnosis Story

I took an at home pregnancy test on Halloween in 2016. Positive! I made an appointment at my gynecologist’s office for the following day. Also, positive! Ben and I enjoyed our little secret for quite a while. We were fortunate to be able to start a family with very little stress. We decided to try, and voila, a baby was on the way! I know this is not always the case, and my heart goes out to the parents who go through infertility, months of hormone treatments, and other scenarios.

For me, the realization of carrying a human being around with me day in and day out was surreal. We announced our pregnancy to our family and friends right around Christmas. We placed copies of one of our early ultrasound photos in picture frames and let our mothers open the gifts like they were any other gift. My mom instantly started crying. Ben’s mom made a loud squeal and jumped up and down. Joy all around – Ben and Katie are having a baby!

Part I – Nuchal Fold

My husband and I went to our 20-week ultrasound full of excitement to see the person growing inside me. The person who has a bit of him and a bit of me.

We sat next to one another in the waiting room and made small talk. “Katelyn,” the clipboard-carrying nurse said as she opened the office door. Ben and I stood and followed.

Weight check first. Ben kindly looked the other way. I took off my coat and boots before stepping on the scale. “This way please,” the nurse said as she gestured. We walked to a private room full of monitors and machines, a few uncomfortable looking chairs, and the paper-sheet-covered OBGYN electric lounger.

Blood pressure check. “Any concerns?” asked the nurse.

“Nope,” I said with a smile toward Ben. I was one of the lucky ones. No morning sickness. An occasional bout of fatigue, sure, but my pregnancy was nothing like those I’d heard of from friends or watched characters experience in the movies. There was a little something growing inside me, but it was by no means a parasite, more like a companion. An “it” because gender reveal was to be a surprise on birth day.

“Lift your shirt please,” said the nurse as she warmed a bottle of a clear jelly substance. She tucked a small towel above my bump to protect my shirt, and another below my bump to protect my pants from excess jelly goop. At 20 weeks, my bump wasn’t much, but I was showing a bit. The ultrasound wand was cold, so thank goodness for the thoughtful jelly warm up!

Ben and I were glued to the screen. Blobs of black and white, some gray, a little movement, a little pressure. “Gender?” the nurse asked.

“No thanks!” Ben and I said in unison.

“I’ll just turn the monitor for a bit then,” replied the nurse.

When the womb photoshoot was over, the nurse handed me a few pieces of scratchy paper towel to wipe off any extra jelly from my belly. “Here are a few photos for you.” I pulled my coat back on and stepped into my boots, and Ben and I left, hand in hand, our faces frozen in wide grins.

A few days later, my doctor called. “Katelyn, we’d like to have you in for another ultrasound.”

“Oh,” I said. “Is something wrong?” He explained that he wanted to have another look, and the images from my first ultrasound weren’t as clear as he likes in order to check on things. “I’ll get that scheduled right away,” I said.

The drive to the doctor’s office wasn’t as exciting the second time around. Ben came along with me, as he did to most appointments since we found out we were pregnant. We were looking forward to seeing Baby again, but we also felt unsure about what my doctor might have seen or be looking for. The whole process was the same for the most part. Except, it was a tad quieter.

At one point, the nurse’s face changed a bit as the wand moved over my belly. She was looking intently at the screen and click, click, clicking away. We could see from the screen that she was spending a lot of time measuring near the neck area. She kept going over it and over it from different angles and with different measurements – a line, a circle, an oval, left to right, top to bottom, diagonal.

This part gets a bit fuzzy for me, but this is my recollection. The nurse didn’t say anything to us about what she was measuring or why. Looking back, I assume it’s because she’s not legally authorized to give us any information or discuss what she discovers; that’s the doctor’s job.

Not long after, my doctor called. “Katelyn, I’d like to schedule an appointment for you at maternal fetal medicine just to get some clarity on a measurement we found in your ultrasound.”

Wait, what? Maternal who? Instantly, the nerves hit, and I couldn’t quite catch my breath. “Is something wrong with the baby?”

“Nothing wrong, no, we just found some discrepancies in the nuchal fold measurement that I’d like to have a specialist look at. There’s no need to worry, your baby looks healthy.” I didn’t think to ask him what a nuchal fold was.

“Okay, sure. We can set up an appointment with them. Thank you.” What is a nuchal fold? I called and told Ben about what the doctor said, and like anyone who doesn’t know what something is these days, we Googled it. Here’s what we read:

The nuchal fold is a normal fold of skin seen at the back of the fetal neck during the second trimester of pregnancy. Increased thickness of the nuchal fold is a soft marker associated with multiple fetal anomalies and is measured on a routine second trimester ultrasound.

Multiple fetal anomalies? More reading …

Most babies with an increased nuchal fold have no other problems. It can increase the risk of chromosome problems such as Down syndrome.

BAM! Ultrasound. Increased nuchal fold. Down syndrome. Does our baby have Down syndrome? What exactly is Down syndrome?

Shock is the only word to describe the feeling. A little blankness of the brain rhythms sprinkled with disbelief and uncertainty. But there was a chance the measurement meant nothing. The reason my doctor called was to send us to a specialist to check to see if the measurement was a marker for something more. He said it himself, “Your baby looks healthy.”

Part II – MFM (Maternal Fetal Medicine)

The drive from Holland to Grand Rapids is only about 40 minutes, but the time in the car on the morning of our first MFM appointment felt like watching fresh paint dry. With a little music playing softly, neither Ben nor I spoke much. Each of us just running through scenarios and what ifs in our own heads.

We parked in a large parking garage. Walked to the outdoor elevator system. Took the elevator to the main level. Crossed the hall. Took another elevator up to the proper floor. Glass doors. Sterile smell. Windowed cubicles. Quick bathroom break. Some paperwork and copies of my I.D. and insurance card. Sit and wait.

“Katelyn,” a male nurse called after about 15 minutes. Ben and I followed. “This way please,” the nurse said as he stepped aside and let us lead him into a hallway. “Second door on the left.”

We ventured in and removed our coats. Ben sat next to the special chair with the paper sheet, and I hoisted myself up. Machine. Jelly. Wand. This time, though, we got to see some 3-D images of the person growing inside me. We were viewing pinks and tans against a black background, rather than grainy white and black images. Absolutely incredible! And, quiet.

The stress of it all rushed in. The unknown. The eagerness to know. The fear of what could be. I lay there crying silently. Ben smiled and held my hand. The ultrasound tech looked a bit surprised at my tears but didn’t say anything. Instead, he handed me a few tissues. The tears continued for most of the appointment.

“I think we have what we need,” said the nurse. “If you’ll come with me, we’ll just have you wait in a different room while the doctor reviews the images.” A shuffling of coats and shoes. Open door. Hallway. Open door. Sit. Door closed.

“I’m sorry,” I said to Ben.

“Don’t be, it’s OK,” he said handing me another tissue. Where Ben was solid as a rock, I was emotional soup.

In time, the tears stopped and a plump male doctor with a beard knocked and entered our waiting room. After a short introduction, “You do have a few options,” he said.

Again, this isn’t word for word, but it’s what I remember given my emotional state. Where my primary gynecologist was supportive — regardless of the nuchal fold, he told me my baby was healthy — the MFM doctor took a blunt and somewhat hurtful approach.

“Babies with Down syndrome can have a host of issues and problems…You have time right now if you’d like to terminate. We could also do a few other tests to confirm the diagnosis of your baby. A blood test panorama or an amniocentesis. An amniocentesis is an invasive procedure and could lead to a miscarriage… A child with Down syndrome lacks in a lot of ways and they often don’t fit into regular society. Your child may never talk or do things on their own,” he said in a sort of droning monologue that seemed to last forever.

Eyes wide. My hands clasped together. More silent tears. The doctor wheeled his chair loudly to the cabinet on the other side of the room and rolled back to hand me a whole box of tissues. He looked from me to Ben and back again.

“I don’t want to do an amnio,” I said. Ben nodded. “Maybe we’ll do the blood panorama thing. How accurate is that?”

The doctor explained the panorama and how it works. I honestly don’t remember the description at all. Terms like karyotype and chromosomes were used.

Ben and I were asked to make our way to a lab, a place conveniently located in a different part of the same building. Check-in. Sit and wait. A while later a technician called my name, “Katelyn,” and I followed the nurse to a small private room. Gloves. Needle. Poke. The flow of blood through the needle into the plastic tubing, filling the blood vile crimson. All there was left to do was wait.

I got home from MFM that day emotionally drained. Fear crept into every part of my being. What if our baby has Down syndrome? Why us? Why me?

Part III – Results, Announcement, and Perceived Acceptance   

Our blood panorama results came back with a 99.98% chance of Down syndrome. And with the results, a bill for just shy of $8K! In the confusion and uncertainty of the moment, we never once asked about the cost for a procedure or test. With a little back and forth with insurance and the panorama lab, we didn’t end up paying nearly the original bill, but with those results, topped by the cost, I just about lost it.

99.98% is pretty much a slam dunk, on target, homerun blood test result. Our baby has Down syndrome. Ben and I kept the news to ourselves for a few days. We let the term wash over us and eventually settle into our bones.

I did a lot of Googling. What is Down syndrome? What causes Down syndrome? What’s the life expectancy of Down syndrome? Will this baby live with us forever? Will this baby be able to learn to talk, to dance, to play games, to read books, to live on their own? So many questions. So many worries. So much fear.

In my searches, I found resources and support. I bought the book The Parent’s Guide to Down Syndrome. I read. I cried. I read more. I cried more.

We weren’t sure how to tell family and friends about what we knew to be true. I took the easy way out. I sent my siblings a group text. I received “I love you” and “you can do this” in response. My sister called me and let me know she was there for me if I needed anything. My parents were supportive and loving. Ben’s parents as well.

Most friends and other relatives were supportive, but also a little unsure how to react to our news. A few friends and family gave us the “I’m sorry” and “special people get special kids” comments when we told them the news. We also a heard “we’re praying for the .02 percent,” meaning praying for us that our child wouldn’t be born with Down syndrome. I know everyone meant well, but even in those early days, each negative comment, sad glance, or arch of the eyebrows in surprise felt amplified to me. With each negative response, I questioned myself and our unborn baby. Ben was quiet about the diagnosis. I could tell it was on his mind, but he was keeping his fears from me.

At that time, we seemed to always think about Baby in comparison to “typical” babies.. The biggest fears about our baby were always based on what our life experience lacked; Ben and I both had very little familiarity with people of differing abilities. How would we be able to take care of someone “different”? Can we do this?

At some point during all the reading and research, I began to settle into my new reality. My baby would be born with Down syndrome; I couldn’t change that. (At the time, I probably would have if I could, but now, I’m so grateful that changing wasn’t an option.) I could do my best to be prepared. I began to feel pride in knowing something about my baby before we ever met face to face. I learned about the different types of Down syndrome, the accepted vernacular to talk about Down syndrome, and just how much people who have Down syndrome are doing in the world today.

We got to see Baby’s face at MFM four more times prior to birth; never meeting with the same male doctor, and I was just fine with that. I got to hear Baby’s heartbeat often as I started weekly NSTs. My mom accompanied me to a fluid check ultrasound at my regular doctor’s office for one appointment Ben couldn’t make. Overall, the checks on Baby’s heart and other vital organs came back negative. Down syndrome was the diagnosis, but no other complications were present. Because of this, I had the choice to continue with our original birth plan of a Holland Hospital delivery, rather than a delivery near the specialists in downtown Grand Rapids. A 10-minute drive to the hospital versus 45 minutes, I was happy about that!

Part IV – Hello, Jameson

I woke June 25, 2017 feeling normal. Big belly, big boobs, stretch pants. Ben and I leashed up our Cocker Spaniel, Nola, and headed out for a morning walk. I did a lot of walking once the snow and ice melted. I love to be outside and walking helped me clear my head during those final pregnant months.

About a half mile from the house, I started to feel some cramping. “Slow down a bit,” I said to Ben. We walked on and the cramping came and went. Home from the walk, we decided to take a quick trip to the grocery store. In the cereal aisle, the cramping hit again. It felt a little more painful, and the thought crossed my mind – Is this labor? I hadn’t had any “false alarms” like you see in the movies. I was scheduled to be induced the following Thursday. And as luck would have it, I had to be to the hospital at 1pm later in the day for an ultrasound to check my fluid levels.

“Maybe we should pack a bag, just in case,” I said to Ben when we got home from the grocery store. I threw in a nightgown, change of clothes, and my toiletries. Ben did the same.

Ring, ring, ring. “Your sister and I are in town. Do you want to grab lunch before your appointment?” my mom asked me over the phone.

Ben and I met up with my mom and sister at The Curragh, an Irish Pub in downtown Holland just a few minutes from the Hospital. When we arrived, they had already ordered my favorite, cheese sticks! I sat and then began rubbing at my belly with a slightly pained expression.

“Are you okay, Katie?” my mom asked.

“Yeah, just some cramping a bit.”

Her eyebrows shot up. “You could be in labor!” We chatted and ate food for a while longer, but I wasn’t feeling very hungry. Just before we left to go to my scheduled ultrasound appointment, I asked my sister if she wanted to join.

She hasn’t had kids of her own yet, so this was an opportunity for her to see a baby in the womb. “I’d love to!” she said.

All four of us – Ben, Mom, Sister, and I (five if you count Baby!) – checked in at the hospital for the ultrasound. The room was large, so they allowed everyone in. The ultrasound tech was an older woman with short hair and glasses. My sister sat close to me, so she had the best view of the screen. Ben and my mom stood against a back wall with a view of the screen as well.

“It’s unusual to need an ultrasound this late in your pregnancy,” the tech said to me.

“It’s just a checkup – my fluid levels were lower than they wanted to see at my last appointment. I’m scheduled to be induced Thursday. Baby has Down syndrome, so we’ve had a lot of different appointments and such.”

“I see,” she said. “Well, good for you.” This response bugged me then and it still bugs me a little now. Good for me for what? For going through with having a baby with Down syndrome?

To triage I was sent while the ultrasound results were reviewed. They set me up on an NST, wrapping my big belly with a tight band to monitor baby’s heartbeat. Mom and Sister stepped out; to where I’m not sure. Ben stayed with me in the room and we flipped through a few channels on the TV.

About 30 minutes later, a Doctor came in and told me my fluid levels were extremely low. And, I was in pre-labor. Alas, those cramps were labor pains! The Doctor wanted to admit me and get me on Pitocin; a hormone infused in the IV to strengthen labor contractions during birth.

“Have you eaten?” a nurse asked.

“Not much,” I replied. She brought me some cheese and crackers and a turkey sandwich. “Once we get you in your room, you won’t be able to eat anything!”

Mom and Sister came back and Ben told them we were moving to a room. “I had a feeling!” Mom said with a smile.

New room. Gown. Hospital bed. IV. Medicine ball. Friendly nurse. Pitocin. Light cramping. Heavier cramping. Pain! For a blink I thought I’d go with a natural birth… More pain. Epidural.

Ben called his parents somewhere in there, and they arrived at the hospital in the evening. My mom and sister were in and out. Ben and I watched TV. At some point my mom put my hair in a ponytail; I couldn’t do it with the wires and IVs all over my arms.

About 10:00pm the pressure down there started to feel stronger and stronger. My mom and sister were in the room and I began to cry. Ben walked over to me, held my hand, and pushed hair out of my face. My mom said, “I love you,” and she and my sister left the room. Later, mom would say she could tell it was almost time for baby to arrive because of my sudden emotional state.

We waited a little while longer and I finally asked if I could start pushing around 10:40pm. Breathe. Push – 1, 2, 3, 4, 5, 6, 7, 8, 9, 10. Breathe. Push. “You can do this,” the female doctor said. “You’ve got this, push push push.” In just a few minutes, I could feel Baby’s head crowning, and it stayed there in between pushes.

“I don’t like it! I don’t like it!” I remember saying to Ben. One more big push, and out slid Baby. Born at 10:50pm. An unlocking of our hands, Ben stretched away. I couldn’t see him. Then all the sudden he was back, his nose nearly touching mine. “It’s a boy! It’s our Jameson!” he smiled.

The doctor placed Jameson on my chest. He squirmed and wiggled, but there wasn’t much crying. He made sounds, but they were relaxed, almost like whispers. I took in his soft skin. His smell. His wispy clump of dark hair. His small eyes, like little almonds. His puffy cheeks. I counted each set of fingers and each set of toes. I cried. Ben cried. “Jameson, you’re here!” I breathed.

A tiny part of me wondered if Jameson, after all we went through, all the tests and worry and fear, if he would be born typical. But I could tell. Jameson has Down syndrome. My heart broke a bit at the time, banking on all of the signs and tests getting it wrong. And yet, there I was holding this living being, created with love, who needs my love now more than ever.

About 15 minutes into skin-to-skin, Jameson was whisked away to the bassinet near my bed for a few checks. They were looking at his coloring, slight jaundice perhaps, and checking his heart and his lungs. Ben stepped out of the room at this time to tell our waiting family the big news. A baby boy – a healthy baby boy.

After a few hours as a new family unit, we opened the door for family to meet Jameson. Smiles. Tears. Hugs. “Congratulations!” The excitement died down, and Ben and I were left alone with our new baby once again. We kept Jameson in the room with us throughout our stay at the hospital. Ben changed several brand-new baby diapers – that meconium, black tar like stuff. We spent minute after minute just looking at him, savoring him like a piece of decadent chocolate cake you just can’t get enough of.

The morning following Jameson’s welcome into the world, a hospital liaison came in with a book for us. It was about Down syndrome. He asked if we knew about Jameson’s diagnosis, and we said we did, that we knew early on in my pregnancy. He mentioned the Down Syndrome Association of West Michigan and gave us their information. “If you want to talk to other parents at all,” he said as I left the room.

Ben and I each had moments of total and complete uncertainty, anger, sadness, and fear while staying in that hospital room. There were tears of joy and happiness, but also tears of sorrow and fear, uncertainty and guilt, tears for the loss of what we thought our lives would be, and tears as we wondered what our lives would be like from here on out. What does Down syndrome mean for Jameson? How will he be? Who will he be? How will we do this?

On the third day, we packed up our belongings and buckled a 7-pound 1-ounce baby into a car seat that looked way too big for him.

We made it. We made it through all the what ifs since our 20-week ultrasound appointment. Jameson was here. A living, breathing, sleeping, eating human being. Down syndrome or not, he just needed us to love and care for him.

Three months later, I wrote the first draft of the book I Am Me. After a year of trying to find a traditional publisher, I was connected through a writer friend to a third-party publisher. I started a GoFundMe to help cover costs. I hired an illustrator to turn my words into visual inspiration. And, I made the commitment to donate $3.21, for Trisomy 21 Down syndrome, of every book sold.

Jameson spent a few days at the children’s hospital for an emergency surgery to fix pyloric stenosis when he was 8 weeks. Other than that, he is every bit the “typical” baby you think of. And that’s just it, Down syndrome or not, he’s who he is meant to be. And we were meant to be his parents.

To answer the big question that plagued us throughout my pregnancy, how will we do this? We just do. We take every day as it comes. We love fully. We allow Jameson to be Jameson.

“We are all different, our shapes and our sizes, our color of skin and care. But still we’re the same, and we need one another to love and listen and care. You are you and I am me, just exactly how life is meant to be,” as quoted from my book I Am Me.

*Special thanks to Betsy Peterson for helping me refine and edit this piece.