Do Work – Be Creative – Give Fully
Love is a book we read together.
Love is a jacket in snowy weather.
Love is a sun to brighten our day.
Love is a boat to float us away.
Love is a song we sing aloud.
Love is a wish we make to a cloud.
Love is a poem we dream alive.
Love is a verse we fight to revive.
Love is a bag of all that is right.
Love is a hand to hold at night.
Love is a shadow when we feel alone.
Love is a line held fast to a stone.
Love is a whisper of care on the breeze.
Love is a nest built high in the trees.
Love is a feeling of comfort and hope.
Love is a word we use to cope.
Love is a life in need of support.
Love is a ship awaiting transport.
Love is a source that credits the past.
Love is the future that’s coming too fast.
Love is the now and love is the then.
Love is the tomorrows we won’t give in.
Love is a secret held close to the heart.
Love is a glass—fragile from the start.
In 2020, I read 46 books, just shy of my personal goal of 50. From historical fiction to self-help to fantasy, reading helped me unwind and explore new-to-me worlds and experiences in 2020–a year of hardship, COVID-19, and the shifting to a different kind of normal. In this new year I plan to continue to read, pushing myself to seek works that challenge my worldview, experience, and understanding. The below list includes all of the books I read in 2021 (not including 4-10 children’s books that I enjoy reading with Jameson daily!)
Last year I simply catalogued my reading list, this year I am adding a quote from each work that most inspired me to pause and think, laugh-out-loud, or intentionally shift my way of seeing the world. Here’s my January 1 – June 30, 2021 completed reads list. For July 1 – December 31, 2021, follow Part II.
In 2018, I took the advice and support of colleagues, friends, and family and started a GoFundMe. In 2019, I self-published I Am Me. In 2020, I focused–I called, emailed, used Social Media, and even gave books away for free to share I Am Me with the Down syndrome community and beyond. I am happy to announce that I Am Me will be available as an English/Spanish book in 2021!
After hearing from so many of you about how the book inspires and empowers, and after dozens of requests for a Spanish translation, I am over the moon to be able to share the big news. With support from Niurka Aileen Diaz and Hayley Chase, I Am Me will be available in English with Spanish translations on every page.
Diaz and Chase worked with me to translate and enhance the musicality, cadence, and meaning behind I Am Me.
Yo soy yo, y eso es todo lo que necesito ser. I am me, and that is all I need to be.
Check back in 2021 for the re-launch of I Am Me, available in English and Spanish. Until then, take a look at this Literature Review guide by Learning to Give: I Am Me.
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!
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
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.
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)
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
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:
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.
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.
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.
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