KatelynShae
Do Work – Be Creative – Give Fully
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!
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.
Recap – October 2019 Down syndrome Awareness Month Part II
Continued – I committed to posting a story, fact, or support note on Facebook each day during October 2019 in honor of Down syndrome Awareness Month. I’d like each post to live in one place, so here they are for ease of reference.
October 16 – Down syndrome Awareness Month day 16 When I say Jay enjoys books, I mean it. Research shows that reading books helps foster language development. And by that, I’m not just talking about verbal spoken words, but the recognition of the meaning of a word as an action, feeling, or descriptor. Books encourage creativity, thinking, memory skills, empathy, and so many other life lessons. I so cherish the moments recently where Jay selects a book from the pile, carries it over to me and climbs into the seat of my lap to read to him. And bonus, he always seems to search for and spot the smallest image and point it out. Like the mouse and banana in Goodnight Gorilla or the little mouse on each page in Goodnight Moon. Jay notices the small things, and it’s a reminder for me to notice those things in life, too. 
October 17 – Down syndrome Awareness Month day 17! Contrary to what a lot of people notice about Jameson when they meet him, he’s not always happy. In fact, he has a wide range of emotions just like you and I. And, he’s starting to test limits and get vocal when things don’t go his way. He’s loving to his core and generally up for a hug after he’s had time to observe. But don’t let his adorable mug trick you into thinking he’s always happy … he’s human and with that reality comes the good and the bad/sad moments inevitable to this thing we call life.
October 18 – Down syndrome Awareness Month Day 18. “You are you and I am me, just exactly how life is meant to be!” -KSH For today (and every other tomorrow): Enough. Worthy. Whole.
October 19 – It’s Day 19 of Down syndrome Awareness Month! Words have meaning. What we say matters. How we say something matters. You may know where I’m going with this … the R word. When I hear it used today in movies, in conversations, in comments online, it takes my breath away and I feel repulsion and anger. Now I have a story to tell. I was a user of this word in my youth. I didn’t think anything of it. I heard it and I used it, too. But one afternoon, my family and I went to watch the Lion’s football game at a friends. In this family, at the time, all I knew was that one of the siblings was a little different than me. I was sitting around a large oak table in the dining room surrounded by about five other people. We were chatting, about what I honestly don’t remember. But I do remember my 14-year-old self nonchalantly saying something and then following it with the “isn’t that R…?” I was met by a short silence, maybe only a few seconds. As I looked around the room, everyone was looking intently at me. After a beat, the conversation continued. But in that moment, I felt shame and regret. I was embarrassed using that word in that way with those people. See there, “those people…” Fast forward to 2017 and giving birth to a healthy, beautiful baby boy who has Down syndrome. There is no them and us. There’s no “those poeple.” There’s human. There’s value. There’s worth. There’s no place for the R word.
October 20 – Day 20 of Down syndrome Awareness Month! “I’m sorry” are two words no expectant mom or dad wants to hear. And they shouldn’t ever hear, “I’m sorry” followed by “your child has Down syndrome”. Saying “I’m sorry” assumes a child will amount to nothing or very little. It places them in an “other” box. What do you say? “Congratulations!” “What a blessing!” “How wonderful!” -Some of the above ideas come from the book Scoot Over and Make Some Room by Heather Avis. This is a good read for any parent and shouter if worth.
October 21 – Down syndrome Awareness Month day 21! People talk about certain characteristics or features in individuals who have Down syndrome; Including a single line along each palm or slightly almond-shaped eyes. Jameson has a wispy yet thick head of hair.Regardless of the way science describes the characteristics of people with Down syndrome (outdated textbooks still use the “R” word…see Day 19 post) each individual is unique. And, many look more like their birth parents than not.
October 22 – Down syndrome Awareness Month day 22! “Low muscle tone” is a statement used often when we talk about children who have Down syndrome. It took much work and time for Jameson to be able to hold his head up all by himself, it took much work and time for Jameson to be able to sit up by himself, it took much work and time for Jameson to be able to stand by himself, to crawl, to walk, to say “momma, dadda, buh-bye”. Side note: Although Jameson’s neck muscles needed extra attention as an infant, he was able to latch and nurse. I count myself lucky to have been able to breastfeed Jameson throughout his first year of life. It wasn’t always easy, in fact, it was really hard and frustrating at times trying to situate our bodies in a way that worked for both of us, but it was a blessing to be able to provide in that way for him. If I would have needed to, I’d have gone the pump and bottle route, or even the formula route. Breastfeeding worked for us. But it’s important to remember that it doesn’t always work well and that it is OK to choose a different option. Infants need to eat, sleep, and potty, but most importantly they need love. OK, back to learning skills … Fine motor, gross motor skills, and oral motor skills take work and time! The key here is TIME. In time, Jameson accomplishes the things that you or I probably take for granted. In TIME and with hard work, support, and encouragement, Jameson meets and often exceeds expectations. On Jameson’s time, and at his own pace, he can achieve anything.
October 23 – Day 23 of Down syndrome Awareness Month! The dictionary definition of a disability is a physical or mental condition that limits a person’s movements, senses, or activities; it is considered a disadvantage or handicap. However, more and more, the term disability is referred to instead as “differently abled” or “exceptional people”. Which of the above definitions evokes a more positive message about people living in a different situation from your own? The later, right? Wouldn’t an even more positive definition simply be “able” … though we are different, we are able. Jameson is able!
Day 23 of Down syndrome Awareness Month take 2! I just realized I already shared the post content I posted earlier today. It’s important! … but also, I forgot I already shared it.Here’s something new 
About 5,300 babies are born with Trisomy 21 (Down syndrome) in the United States every year, or 1 in every 792 births. I didn’t realize how large this community was until we became apart of it. Now that we have Jameson, it is important to me that we help the world to really “see” him for who he is:
-A person of value.
-A person with great gifts to give.
-A person to say “hello” to at the store, rather than glance and look away.
-A person to invite to play dates.
-A person to groove to an impromptu dance party with.
-A person to learn a few basic sign language signs for so we can all communicate together.
-A person to include.
October 24 – It’s Down syndrome Awareness Month day 24! A single palmer crease in the hands is a line that runs across the palm of the hand. It’s a possible physical trait and only 45% of individuals who have Down syndrome have it. Jameson is in the group. Scientifically, it’s the result of hypotonia, where his hands were held tight in a fist while he was growing in my womb. Interestingly, a single palmer crease appears in about 1 out of 30 people and males are twice as likely as females to have this condition.
October 25 – Down syndrome Awareness Month day 25! Having Jameson has helped me be a better person in so many ways. As Anne Lamott said, “writing can give you what having a baby can give you: it can get you to start paying attention, can help you soften, can wake you up.” In my case, Jameson gave me a new reason to write. He inspires me to share stories, to connect, and to provide commentary from my parenting perspective and experience. Although E. L. Doctorow was referring to writing a novel with this quote, I think it applies to parenting, growing up, and life as a whole: …”[it’s] like driving a car at night. You can only see as far as your headlights, but you can make the whole trip that way.” We can only really ever know what is right in front of us, in the moment. Jameson helps me to see that. I have times where I imagine the future and I feel lost and sad because of all of the unknowns, but really, no one knows what will be. We’re all just driving along and taking in as much from our surroundings as we can, in the assumption and rightfully so, that we’ll get where we are supposed to go. If I can, if we can, handle life as it is now, we’ll handle whatever comes down the road, too.
October 26 – Down syndrome Awareness Month day 26! Jameson enjoys the same things as any kid. There’s nothing he can’t do! Sometimes an accommodation is needed, but providing opportunity for accommodations as necessary is good for all. Inclusion always, not just when it’s convenient. We as a community need to work together to keep an eye out for opportunities to make sure every child (every person!) is involved and knows they are seen, heard, and valued. “We need one another to love to listen and care!” -KSH, I Am Me
October 27 – It’s day 27 of Down syndrome Awareness Month! A strong, caring, and welcoming community is ideal for a child to flourish. Safe places to explore, to learn, and to have new experiences take some of the “work” out of the everyday skill building necessary for little ones who have a little Extra. Some of the best days with Jameson are those where I get to see him try something for the first time. Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to lead fulfilling and productive lives. (https://www.ndss.org/about-down-syndro…/down-syndrome-facts/)
October 28 – Down syndrome Awareness Month day 28! People who have Down syndrome have jobs, love significant partners, write books, drive cars, own companies, volunteer, and do all the things a contributing member of society does! “Children [and adults!] are like popcorn … popcorn is prepared in the same pot, in the same heat, in the same oil, and yet, the kernels don’t all pop at the same time. … The ultimate success is when we work together to allow each to be their own person, to grow and learn at their own pace.”
October 29 – Down syndrome Awareness Month day 29! One of the best things about having a child is being able to see the world through their eyes. The same holds true for all kids. There is so much learning and growth happening in the first moments of life, in those beginning years and right on through. There’s a lot to look forward to. I know I would be a different me if it weren’t for Jameson. He makes me better. Even when we are true advocates for a cause, when we see value in all human life, when we work together to provide opportunity and support, we likely unintentionally fall back into the rhythms we grew up with. We must be active in our advocacy and by that I mean we need to be aware of our own faults and bias. But simply being aware isn’t enough. With awareness comes the responsibility to do the hard work to train ourselves, our minds and our actions, so that we are able to fully immerse ourselves in new rhythms.
October 30 – It’s day 30 of Down syndrome Awareness Month! Down syndrome occurs in people of all races and economic levels. The cause of the extra full or partial chromosome is still unknown. “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. There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents’ activities before or during pregnancy. Reminder, Down syndrome is a condition or a syndrome, not a disease. People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it. You can’t “catch it” or “grow into it or out of it”. For more information visit https://www.ndss.org/about-down-syndrome/down-syndrome/
October 31 – Day 31 – Down syndrome Awareness Month! The month may be over, but that doesn’t mean we stop sharing stories and educating ourselves and each other about Down syndrome. Here’s a little recap:
1. For me Down syndrome is Love and Pure Potential.
2. Name the person before the descriptor. It is better to say, “Jay has Down syndrome” or “man with a visual impairment.” NOT “Jay’s Downs” or “Down syndrome boy”
3. There is no them and us. There’s no “those poeple.” There’s human. There’s value. There’s worth.
4. Every child (every person) is who they are meant to be, period.
5. Jay encourages me with his actions and his words (signing, action, or verbal) to give him the grace and the opportunity to respond in his own way, at his own pace; when Jameson is ready.
6. We celebrate the little and the big milestones. Each takes hard work and a whole lot of patience.
7. Instead of the term disability instead use “differently abled” or “exceptional people”.
8. Jay is human and with that reality comes the good and the bad/sad moments inevitable to this thing we call life…no one is happy all the time.
9. Inclusion always, not just when it’s convenient.
Two blog posts: Expectation vs. Reality and There’s Nothing Wrong
Recap – October 2019 Down syndrome Awareness Month Part I
I committed to posting a story, fact, or support note on Facebook each day during October 2019 in honor of Down syndrome Awareness Month. I’d like each post to live in one place, so here they are for ease of reference.
October 1 – October is Down syndrome awareness month. I’m here to answer any questions and share stories if you’re in need. In short, for me Down syndrome is Love and Pure Potential. “You are you and I am me, just exactly how life is meant to be!” –KSH, excerpt from I Am Me available December 2019
October 2 – Down syndrome Awareness Month – Day 2! Every parent ever has said this, “They’re only little for a short while…” and golly, this is so true! It’s hard to remember Jameson in this 7lb 1oz tiny size when I see him now. Life is amazing.
October 3 – It’s Day 3 of Down syndrome Awareness Month. Jameson attended his second dance class today. From 3 months old and unable to hold up his own head yet to walking on his own today, he’s put in so much hard work and tackles it all with a smile! You are our Super Jay!
October 4 – It’s day 4 of Down syndrome Awareness Month! Using Person-First Language
–A disability is something a person has; it is NOT who they are.
–Name the person before the descriptor. It is better to say, “Jay has Down syndrome” or “man with a visual impairment.” NOT “Jay’s Downs” or “Down syndrome boy”
October 5 – Down syndrome Awareness Month day 5. Even though he is small, Jameson is mighty!
October 6 – Down syndrome Awareness Month day 6. This is a track we didn’t know we were meant for, but we are so happy we’re on it “You’ll follow your track through twists and through bends,
And stop at new stops and pick up new friends.
They’ll all come aboard with smiles and greetings.
You’ll have such great times with the people you’re meeting.” -I Knew You Could, Platt & Munk
October 7 – Down syndrome Awareness Month day 7! The gift that disguises itself as fear and uncertainty, but quickly transitions into pure potential and love and keeps on giving… I love you with my whole heart.
I love you with my whole brain.
I love you with my whole body.
And, I’ll always love you just the same.
October 8 – Down syndrome Awareness Month day 8. Our little ones are fighters! Some have to go through open heart surgery just months old, and again a little later in life. To you and your parents I say, “You are SUPER!” Although Jay didn’t have any heart complications, we did have a health scare at 2 months and found ourselves at Helen DeVos Children’s Hospital. He wasn’t gaining weight and he was spitting up after feedings so much that Ben and I jumped in the car, with nothing packed, and drove to the ER at 2am one night. Jay had Pyloric Stenosis – a thickening or swelling of the pylorus — the muscle between the stomach and the intestines — that causes severe and forceful vomiting in the first few months of life. It’s something my mom, too, had surgery for when she was just an infant. We knew my mom’s history going to the hospital, in fact, she was worried about Jameson and the condition a few weeks prior. When we got to the hospital, we told the nurse about our thoughts and they said Jameson was to young to have that condition. But, we advocated and asked, pushed really, for a stomach ultrasound … and they found exactly that. Jay was in surgery that afternoon. You feel so helpless when there’s something going on inside your little human. Looking back, it’s all a blur. But, it is also a reminder of how strong Jameson is…how strong people truly are.
October 9 – Down syndrome Awareness Month day 9. Every child (every person) is who they are meant to be, period. As quoted by Heather Avis in Scoot Over and Make Room: “Jean Vanier: ‘..our world is not just a world of competition, the weakest and the strongest. Everybody can have [a] place.'”
October 10 – Down syndrome Awareness Month day 10. OWL – Observe, Wait, Listen. Jameson is pretty social and loves to say “Hi” and wave to anyone and everyone more and more lately. When giving Jay tasks or teaching him new things, he often just needs a bit more time to consider, to think, and to respond. In so many ways, this has been a life lesson for me! Jay encourages me with his actions and his words (signing, action, or verbal) to give him the grace and the opportunity to respond in his own way, at his own pace; when Jameson is ready. Sometimes that means 5 minutes of a little back and forth between “first lets change your diaper, and then we can watch some of Coco!” (Jameson’s favorite movie of the day is Coco, along with Sing and Despicable Me 3 … movies full of music). He hears my request, he listens to understand, and he knows what I am asking. He though, like so many other kids, just wants to watch Coco now, rather than wait. But after a few minutes of stalemate, he looks at me, signs “first” and points at his diaper, and then very clearly, points at the TV and says “Coco!” Then, he puts both hands to the ground, plops his bottom down and sort of side rolls onto his back so we complete his diaper change. And, you guessed it, when I’m all done he’s back to pointing at the TV and saying, “Coco!” and signing “please”. What a kid, right?!
All people with Down syndrome experience cognitive delays, but the effect can be mild to moderate and is not indicative of the many strengths and talents that each individual possesses. More detail at https://www.ndss.org/about-down-syndro…/down-syndrome-facts/
October 11 – Down syndrome Awareness Month day 11! Raising a child takes a lot of work. Add in physical therapy, occupational therapy, and medical appointments, on top of full time jobs, a house to maintain, bills to pay, etc. Children are SUPER … but tiring, to put it bluntly. Parenting involves a level of give and take. Life is different with a child in it, and it is new, unknown, and bursting with potential. Being intentional is a struggle when life is pulling me in so many directions. But, to be intentionally present with and for Jameson as much as possible is my parenting goal. Today I salute the Dads. Your love is genuine. Your excitement at milestones is palpable. Your always up for a little football/wrestling/dancing/basketball/tickle fight. In our situation, Jay’s Dad was there at our 22 week official ultrasound diagnosis, at birth for the confirmation of Jameson’s diagnosis, and Jay’s Dad is intentionally present with Jameson everyday, even if only for a few hours after work. We make a good team.
October 12 – Down syndrome Awareness Month day 12! We celebrate the little and the big milestones. Each takes hard work and a whole lot of patience.
October 13 – Down syndrome Awareness Month day 13. Jameson loves books! Some of his favorites include The Wonky Donkey, Goodnight Gorilla, and You’re Here For A Reason. And soon, he’ll have a book in his hands that was written for and because of him ❤️
October 14 – Day 14 of Down syndrome Awareness Month. It is our differences that make us who we are and help us to see the world in our own way. “There’s just one me, nobody like me, take a look and see, just one me.” -Sesame Street Song by Pentatonix People of all ages, shapes, sizes, and colors have things in common; it could be their friends, it could be their hair color, it could be their favorite book or song, it could be their dream to become a professional soccer player. We are individuals, but we are always a part of a community. A community is made up of individuals and each individual plays a vital role in their community!
October 15 – Today is day 15 of Down syndrome Awareness (Acceptance!) Month. The dictionary definition of a disability is a physical or mental condition that limits a person’s movements, senses, or activities; it is considered a disadvantage or handicap. However, more and more, the term disability is referred to instead as “differently abled” or “exceptional people”. Which of the above definitions evokes a more positive message about people living in a different situation from your own? The later, right? Wouldn’t an even more positive definition simply be “able” … though we are different, we are able. ABLE!
There’s Nothing Wrong
Not long ago I had an experience that made me rethink what I know and how I communicate about Down syndrome.
I was having a telephone discussion with someone whom I value and respect. We were talking about providing resources and lessons via my day job with Learning to Give, and I mentioned wanting to make sure what we were planning was inclusive and open to a diverse audience. The person on the call agreed and we began chatting about why inclusion is important.
To be frank, some of the parts of this conversation have been rewritten because I wasn’t recording the conversation or intending to remember it word for word. So, this is my recollection, but the gist remains:
“I think it is really important to have full inclusion,” she said. “When I was working oversees, I was in a classroom where three young boys had Down syndrome. They were fully included. They got along with everyone and we could all see how much being with their peers was helping them learn and grow. It was like there was nothing wrong with them.”
Did you catch that? The closing remark? “It was like there was nothing wrong with them.” It hit me like I just finished sprinting a lap around the track. I felt winded. My hands began to shake. Instantly, my brain was working overtime to try to figure out what to say.
At first I couldn’t say anything. I let the conversation continue on as if nothing cracked a hole in my atmosphere. But after a few minutes I managed to get my thoughts in order, and before the conversation switched to a new topic, I advocated.
“Wait, I want to go back to something you just said,” I ventured. “I don’t think you meant anything by it at all, but there’s nothing wrong with a person who has Down syndrome or any other exceptional need. I just want to be sure that we’re on the same page about that.”
We all say things and do things based on what we know and what we’re socialized to think. In some ways, our thoughts are “stuck in the past” and so ingrained in us that we don’t realize that what we are saying, or rather, how we say something can be harmful, to both our understanding and to human progress.
Our worlds are socially constructed, or the development of our understandings of the world form through the basis of shared assumptions about our realities. In this theory of understanding, development is socially situated and knowledge is constructed through interaction with others. We are a product of our environments plus our willingness to step outside of our comfort zones to experience new surroundings.
How we talk about things and how the world talks about things are not always the same. Big D Discourse is the written or spoken communication on a large scale; the way the world communicates about a topic. Little d discourse is the written or spoken communication in our own communities and circles. Discourse, discourse and social contructionism are concepts I learned in graduate school and I see played out on a daily basis.
For me, the above conversation became a moment for me to consider how an innocent comparison in conversation can be harmful to the Discourse surrounding a diagnosis like Down syndrome.
The Discourse about Down syndrome is changing for the better, but there is still work to do, just as the above conversation displays. Even when we are true advocates for a cause, when we see value in all human life, when we work together to provide opportunity and support, we likely unintentionally fall back into the rhythms we grew up with. We must be active in our advocacy and by that I mean we need to be aware of our own faults and bias.
But simply being aware isn’t enough. With awareness comes the responsibility to do the hard work to train ourselves, our minds and our actions, so that we are able to fully immerse ourselves in new rhythms. It’s about learning from the past so that we can progress toward a more inclusive, whole, and purposeful future.
I want my son to know he is loved, valued, and able. There’s nothing “wrong” with him. He is exactly who he is meant to be.
Expectation vs Reality
A little under two months ago, I registered our son Jameson for a toddler ballet class. At the time, he wasn’t even walking on his own yet! I felt that in two months he’d be running circles around me. Although he isn’t running per se, he’s walking completely unassisted. And that is a big accomplishment!
Read The Mighty version of this blog: Leaping Over Fear and Uncertainty as I Raise My Son With Down Syndrome
Fast forward to September 26, 2019 while changing Jay into his ballet class required attire of black leggings and a white t-shirt. It was nearly 10am and the butterflies hit. “Why am I nervous?” I thought to myself. The class wasn’t for another 45 minutes. And yet, that was exactly it, I was nervous.
“Would he be OK without me? Would he listen to the teacher? Would he follow directions? Would be be kind to the other kids? Would he cry? Would he be scared?”
Everything in Jay’s learning and growth up to this point was encouragement that he was indeed ready for these types of experiences. His physical therapist, his speech teacher, his Early Head Start teacher, they all tell me how well Jameson is doing and how much progress he has made. But this little voice in the back of my head was shouting, “he’s not there yet!”
Thinking about that voice now, I can label it as the voice that recognizes Jameson is different. It’s the voice that says Jameson has Down syndrome. And with Down syndrome the droning and buzzing of thoughts ingrained in me, “he’s behind,” he’s not ready,” “he’ll be overwhelmed,” “he’ll get trampled over,” “he’s not talking.”
It’s expectation versus reality. It’s that moment when what you thought something would be like turns out to be something you never even considered. It’s not something to feel shame or guilt about. It’s that same voice that taunted me when we found out our baby had a 99.9% chance of being born with Down syndrome at 22 weeks pregnant. “What does that mean for him?” It’s a loaded question with very visceral reactions.
Fast forward to the now. I loved dance as a kid and I hope Jameson loves it, too! It’s scary allowing your kid to try something new and “let go” of control. Jay was all smiles when we arrived, he waved at everyone and said “hi!” When it was time to go into the dance room and take a spot on a reading rug, he did a little escaping out the classroom door to find me until they (I curtly asked another parent to step back) finally closed the door to the waiting room.
Jameson mostly observed to start. A few of his new friends were rather upset and had parents on and off the dance floor trying to help them calm down so they could join the class. I could see Jay struggling with how to react to their emotions. He was definitely curious as to why they were so upset and he wasn’t sure whether or not he should be upset, too.
He loved the mirrors! He liked the music and even followed along when they were asked to hop and bop and do other silly movements. He got to wear a cool prince cape and prance around with a stuffed teddy bear.
It was an emotional 45 minutes for me. I had to fight the urge to go into the room and sweep him into my arms when his tears started or when he started signing “all done” with about 15 minutes left in the class. He cried, but not very much. His tears seemed to be in reaction to other little ones’ tears, rather than his own fear or discomfort. He stayed in the group class for the entire 45 minutes!
My insides were squirming with butterflies the whole time. I intended to chat with other parents in the waiting room in an attempt to make new friends, but talking without falling into a full blown sob was not an option. After a trip to the bathroom to wipe away my tears and blow my nose, I mostly kept to myself and glanced through the two-way mirror here and there.
In the end, Jameson came out of the room snuggled in the arms of one of the assistant teachers. With about 10 minutes in the class, he simply needed someone to hold him and she obliged.
His smile upon eyeing me in the waiting room made my heart burst. I swallowed him up into a big hug and fought back more of my own tears. He made it. We made it! And better yet, he seemed to have fun. The smiles and giggles were there along with his quivering lip and moments where he was simply standing to observe. He didn’t do better or worse than any of the other kids, he did what Jameson was meant to do.
Jameson was a kid in a ballet class. Even though my butterflies were in reaction to very real emotions of fear and uncertainty, the fact that Jameson has Down syndrome didn’t make a difference. On the contrary, he was right in there with all of the other kids battling their own emotions and fears about being in a new place with new faces and learning new things. Jameson’s first dance class was a reminder to me about expectation versus reality. Life brings what it brings. We are who we are. It’s all about appreciating diversity AND celebrating it AND leaping over fear and uncertainty to recognize the sweet moments as they come.
“You are you and I am me, just exactly how life is meant to be.”
Sky Unknown
Hills and mountains rise in the distance.
Peaks may reach above the clouds.
Swirls of wind and gusts of air.
Greenery growing like wisps of hair.
Stretching toward the sky unknown.
Rooted to the ground that’s home.
Water flowing down, down, down.
Paths of motion toward the ground.
Little rivers full of hope.
Up above and far below.
Choices flowing with each slope.
Things known and things to know.
This or that, then or now.
I flow and fall in a careful current.
I select the path I explore.
I step in and I step out.
The sky becomes the floor.
A different view where water flows.
What then?
Perspective Part III
In 6th grade I joined the basketball team. The girls’ team. I couldn’t play because I was a grade too young. So I acted as the team “manager” and participated in every practice and attended every game.
Martha was a cheerleader. She enjoyed the chants, the curling of her hair, the sparkles and the rhinestones. I liked glitter, but I also liked the thrill and challenge of dribbling, shooting, blocking, and running.
That was us. She the “girly-girl” and me the “tom-boy”. Best friends with different interests. But we had one thing in common. We did. And it made us close, so close that we’d tell one another everything and anything. We dreamed together. We cried together. We learned together. Martha knew me.
Martha was loved, and I was tolerated. She was a boy whisperer. At that time she didn’t even notice them, but they noticed her. And I noticed them noticing her.
Forrest was a quiet boy. He was the nicest, kindest, most generous, well behaved boy in our grade. And, Forrest was head over heels in love, or at least “in like” with Martha.
“Sam,” he said one morning before homeroom. “Will you give this to Martha?” It was a note. Martha’s name written on the top folded section with a little lopsided, boy-drawn heart.
“OK,” I said. Forrest nodded and walked passed me into the crowd of students.
“Here,” I said to Martha as I handed over the note. She snatched it from my hand with a smile. She ran her finger over the little heart and looked at me with her eyebrows raised. “Open it,” I said.
I assumed the note would say something like “do you like me, yes or no?” That’s what all of the movie and TV show notes usually said.
With class just about to start, Martha put the note in her trapper keeper. She didn’t open it right away.
I could see myself and how desperate I looked. I’d floated up and away from myself. I wanted to know what Forrest said. I wanted to open that note. I wanted that note to be meant for me. I felt selfish for feeling that way. Martha was my friend. She was my best friend. She still is.
Alas, no notes came my way. Not in sixth grade, not in eighth, and not even during my sophomore year.
Pathetic, right? I cried and cried. My mother told me it was because I was too mature and too pretty for my age. But I could see what she couldn’t. That smirk. That glint in my eyes. That empty soul. I couldn’t be trusted. And the boys, well, they knew that without even realizing how.
Martha and I, we opened the note together under the bleachers by the football field that afternoon just before 4th hour. It was a word find puzzle with clues as to what words Martha might find. And the words, well, they weren’t as wholesome, nice, or gentlemanly as the Forrest we thought we knew. But, does anyone ever turn out to be the person we thought they were?
—
“Shit,” I said as I tripped in the darkness. “Where’s the flashlight?”
“I didn’t bring one this time,” said Martha. We made it to the cemetery in record time. And after chowing down on that Drost’s goodie box, I still had a few mint meltaways to look forward to later on the ride home in the car.
The cemetery is nestled at a junction in the road just outside of town. A bar packed with Friday night karaoke singers, pizza eaters, and lonely drinkers is just across the road. It’s a small cemetery with maybe 200 headstones of mostly families and family members of people who’ve lived here their whole lives. Everyone knows someone who knows someone with a relative up on cemetery hill.
My grandma is buried in the cemetery next to her own parents. Her plot is always neat and clean. A little chicks and hen plant and daisy grow by her side. And she’s under the shade of a large oak tree.
She’s in the main part of the cemetery. There’s a cluster of headstones back beyond the main grounds with only a few headstones to date. Eventually, the yard will be full of ancestors, but for now it is a field of cut grass and open skyline views.
“It’s really dark tonight,” I said to Martha as we made our way out to the open field. “The sky is so clear, look at those stars.” Glancing upward into the darkness, I thought of my grandma. Her eternal resting place just paces away. I smiled into the darkness and gave a quiet nod. Every time we come here, I always send a special thought her way.
“I think I got the full moon wrong on my lunar calendar,” said Martha. “I could have sworn tonight there was going to be an eclipse.”
“A what?”
“An eclipse. You know, where the sun and moon align and a bright silver ring of light flashes out of the sky.”
“Oh. All I see of the moon is that little sliver over there,” I said as a pointed to the north. Or at least, in my head I felt like I was pointing north. Directions and I are not the best of mates.
“Well, I thought we’d see one out here tonight. Forrest thought so too.”
“Where is he anyway? I thought he’d beat us here.”
“Not sure. We’ll just put down the blanket and wait.” We spread out the small sleeping bag and proceeded to sit next to one another. Martha grabbed her cigarette carton and took out a stick. The flash of her lighter made an orange glow over the blanket. A few puffs and the cigarette smoke was wafting in the night breeze. I laid back to look up at the sky above.
“Do you remember when we were kids and we used to play in the snow out in front of my house?” said Martha. “And, after it rained on top of the snow and the snow got a crust, we’d pretend we were digging up crystals?” I did remember. We’d be all bundled up, only our faces showing. Cheeks red and noses running. We’d play in the bushes out front by her flagpole. We’d sit in the evergreens and dig at the ice crystals with our hands. They were so pretty. So pure. Frozen snowflakes, falling and melting together one on top of another, over and over melting and molding into one substantial mass
“I do remember. We were such dorks.”
“I don’t think we were dorks at all,” said Martha. She stubbed out her cigarette and laid down beside me. “We were creative. And, we made due with what we had. We made up our own world and it was glorious.”
“We still kind of do that, you know,” I said. “Make up our own world.” Martha sat up then. She was quiet for a few moments and then she turned her face toward mine.
“This isn’t made up. This is real,” she said. She inched her face a bit closer. “This,” she said as she put her hand on mine, “This is real. This place is real. What we are about to experience, it is real. Everything else is a farce. Everything else we’ve ever known, we’re all just bits of matter floating around, bumping into one another. What’s real for one person is a dream for another. Reality is relative. Reality is only real when we choose to make it so.”
“Hey ladies,” Forrest said as he walked toward us in the dark. “How’d you beat me here? I know I left in plenty of time.” Martha leaned back and turned her head toward the sound of Forrest’s voice.
“Yeah, yeah,” said Martha. “We’ve heard that excuse before.”
“No flashlight for you either?” I asked Forrest.
“Nah. I have eagle eyes you know. And bat-like senses that help me navigate this here cemetery in the dark.”
—
I love the cemetery at night. The crickets, the bats diving for mosquitoes, the glow of the stars. And the stillness. The dead really know how to relax and take it all in. Obviously, they have no choice in the matter, but for me, that sort of quietness is heaven. I’m the most myself in this cemetery. I can see how calm I look. The tension from the game has completely left my body, my shoulders are at ease, and my eyes are alert but content. I look the prettiest here in this space. Surrounded by darkness, death, and silence.
Forrest unfolded a small blanket as he sat down between Martha and me. The soft underbelly of the fabric brushed against my face as it settled down on my lap. The warmth from the blanket against our bodies was almost immediate. It intensified his scent, the smell of vanilla and cinnamon, sweet and bitter, with a hint of espresso. We sat, the three of us, under his blanket and stared off into the dark distance.
The time passed. Slowly at first and then it gained momentum and seemed to speed by like a bullet train.
The darkness enveloped us. We were part of the nothingness of night. Each of us, individual bodies, eyes wide and minds clear. But we combined together as one mass of matter in the open space. My breathing slowed, my pulse doubled-back to match the flowing sap of the surrounding trees. Martha, on the other side of Forrest, was sitting just as still. Forrest rocked back and forth slightly, I couldn’t see it, but I could feel the slight motion, forward back forward back, his arm brushing lightly against mine.
Slowly, a glow appeared through the darkness. A small flicker of light. And then another. And another. In a matter of seconds, the darkness glowed, glimmering and shining in the distance before us.
I saw us there, sitting, the three of us shoulder to shoulder under a blanket in the night. I remained quiet. We all did. Without sound we could hear the light. I noticed each flicker grow in intensity and power. And then, just as quickly is a light appeared, it would fade in the darkness and a new light would emerge brighter and bolder in its place.