Each of us has a story, an important one that defines who we are and why we do “what were doing”. Some of our legends derive as we are given quirks and turns in life and some of those experiences oblige us are intended to do big-hearted things. I became a publicized scribe after demanding the world to see children, like Cedar, as beautiful and recreation enjoying children who do the same things as other children do. Katelyn became and author after demanding the world to see the power of humanity in her lad, Jameson, likewise born with Down syndrome. Thus was born the legend, I Am Me, the narration behind one mom’s journey.
Katelyn shares hers…
I took an at home pregnancy test on Halloween in 2016. Positive! I made an appointment at my gynecologist’s office for the following. Too, positive! Ben and I enjoyed our little mystery 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 child was on the way! I know this is not always the case, and my stomach disappears out to the parents who go through infertility, months of hormone medicines, 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 maternity to our family and friends right around Christmas. We residence copies of one of our early ultrasound photos in portrait chassis and tell our moms open the gifts like they were any other gift. My mom instantly started crying. Ben’s mom made a loud squeal and mounted 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 agitation to see the person growing inside me. The person who has a bit of him and a little of me.
We sat next to one another in the waiting room and started 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 gazed the other way. I took off my hair and boots before stepping on the scale of assessments. “This way please, ” the wet-nurse said as she gestured. We walked to a private apartment full of monitors and machines, a few cases embarrassing glancing chairs, and the paper-sheet-covered OBGYN electric lounger.
Blood pressure check. “Any concerns? ” requested the nurse.
“Nope, ” I said with a smile toward Ben. I was one of the luck ones. No morning sickness. An periodic bout of fatigue, sure, but my pregnancy was nothing like those I’d heard of from friends or watched reputations ordeal 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 divulge was to be a surprise on birth day.
“Lift your shirt satisfy, ” said the nurse as she warmed a bottle of a clearly defined jelly substance. She tucked a small towel above my protrusion to protect my shirt, and another below my jolt to protect my heaves from plethora jelly goop. At 20 weeks, my protrusion wasn’t much, but I was picturing a little. The ultrasound sprig was cold, so thank goodness for the intelligent jelly warm up!
Ben and I were glued to the screen. Blobs of black and white, some grey-haired, a little movement, a little pressure. “Gender? ” the nanny asked.
“No thanks! ” Ben and I said in unison.
“I’ll simply turn the monitor for a bit then, ” replied the nurse.
When the womb photoshoot was over, the nanny handed me a few cases patches of scratchy article towel to wipe off any additional jelly from my belly. “Here are a few photos for you.” I gathered 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, medical doctors 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 glance, 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 too felt unsure about what my doctor might have learn or “re 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 converted a bit as the rod moved over my belly. She was looking intently at the screen and sound, clink, sounding apart. We could see from the screen that she was spending a lot of time asses near the cervix neighbourhood. She remained going over it and over it from various angles and with different amounts- 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 accept it’s because she’s not legally authorized to give us any info or discuss what she detects; that’s the doctor’s job.
Not long after, medical doctors announced. “Katelyn, I’d like to schedule an appointment for you at maternal fetal medicine only to get some clarity on a measurement we is located within your ultrasound.”
Wait, what? Maternal who? Instantly, the nerves touched, and I couldn’t fairly catch my breath. “Is something wrong with the babe? ”
“Nothing wrong , no, we just saw some inconsistencies in the nuchal crease appraisal that I’d like to have a specialist look at. There’s no need to worry, your baby gazes healthy.” I didn’t think to ask him what a nuchal crease was.
“Okay, sure. We can set up an appointed with them. Thank you.” What is a nuchal bend? I called and told Ben about what medical doctors said, and like anyone who doesn’t know what something is these days, we Googled it. Here’s what we spoke 😛 TAGEND
The nuchal crease is a normal crease of scalp realized at the back of the fetal cervix during the second trimester of gestation. Increased thickness of the nuchal fold is a soft marker associated with multiple fetal anomalies and is measured on a chore second trimester ultrasound.
Multiple fetal anomalies? More read …
Most children with an ever increasing nuchal crimp have no other questions. It can increase the hazards of chromosome problems such as Down syndrome.
BAM! Ultrasound. Increased nuchal fold. Down syndrome. Does our babe have Down syndrome? What accurately is Down syndrome?
Shock is the only word to describe the feeling. A little blankness of the ability lilts sprayed with disbelief and uncertainty. But there was a chance the measurement symbolized good-for-nothing. The intellect 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 gazes healthy.”
Part II- MFM( Maternal Fetal Medicine)
The drive from Holland to Grand Rapids is only about 40 times, but the time in the car on the morning of our first MFM appointment felt like watching fresh depict dehydrate. With a little music playing gently, neither Ben nor I spoke much. Each of us simply guiding 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 vestibule. Took another elevator up to the proper floor. Glass entrances. Sterile smell. Windowed cubicles. Quick bathroom break. Some paperwork and copies of my I.D. and insurance placard. Sit and wait.
“Katelyn, ” a male wet-nurse called after about 15 minutes. Ben and I followed. “This way please, ” the nanny said as he stepped aside and make us extend him into a hallway. “Second door on the left.”
We ventured in and removed our coatings. 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 epitomes of the person growing inside me. We were goal pinks and tans against a blacknes background, rather than grainy white and colors portraits. Perfectly incredible! And, quiet.
The stress of everything is hastened in. The uncharted. The eagerness to know. The nervousnes of what could be. I lay there crying mutely. Ben smiled and maintained my hand. The ultrasound tech seemed a bit caught at my ruptures but didn’t say anything. Instead, he sided me a few cases materials. The rends continued for most of the appointment.
“I think we have what we need, ” said the nurse. “If you’ll come with me, we’ll simply have you wait in a different room while the doctor recalls the images.” A shuffling of coatings 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 feelings soup.
In time, the ruptures stopped and a burly male doctor with a whisker smacked and opened our waiting area. After a short introduction, “You do have a few alternatives, ” he said.
Again, this isn’t word for word, but it’s what I recollect contributed my emotional state. Where my primary gynecologist was supportive — regardless of the nuchal fold, he told me my babe was health — the MFM doctor made a blunt and somewhat spiteful approach.
“Babies with Down syndrome can have a host of issues and problems…You have duration right now if you’d like to terminate. We had the opportunity to do a few cases other tests to confirm the diagnosis of your child. A blood assessment aspect or an amniocentesis. An amniocentesis is an invasive processes and could lead to a miscarriage … A child with Down syndrome shortfalls in a lot of ways and they often don’t fit into regular civilization. Your child may never talk or do things on their own, ” he said in a sort of droning monologue that seemed to last-place forever.
Eyes wide. My entrusts embraced together. More speechless cries. The doctor motored his chair loudly to the cabinet on the other side of the room and flattened back to hand me a whole carton of tissues. He gazed 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 aspect and how it makes. I candidly don’t remember the description at all. Terms like karyotype and chromosomes were used.
Ben and I were asked to draw our way to a laboratory, a situate conveniently located in a different part of the same building. Check-in. Sit and wait. A while last-minute a technician called my epithet, “Katelyn, ” and I followed the nurse to a small private apartment. Mitts. Needle. Poke. The pour of blood through the needle into the plastic tubing, filling the blood ugly crimson. All there was left to do was wait.
I got home from MFM that day emotionally drained. Fear snuck into every part of my being. What if our newborn has Down syndrome? Why us? Why me?
Part III- Answers, Announcement, and Perceived Acceptance
Our blood panorama answers was coming with a 99.98% fortune of Down syndrome. And with the results, a proposal for time reticent of$ 8K! In the confusion and mistrust of the moment, we never once to know more about the cost for a procedure or exam. With a little back and forth with guarantee and the panorama lab, we didn’t end up compensating nearly the original invoice, but with those results, exceeded by the cost, I just about lost it.
99. 98% is pretty much a slam dunk, on target, homerun blood measure solution. Our baby has Down syndrome. Ben and I preserved the report to ourselves for a few dates. We make the word move over the americans and eventually settle into our bones.
I did a lot of Googling. What is Down syndrome? What movements Down syndrome? What’s the life expectancy of Down syndrome? Will this babe live with us forever? Will this newborn be able to learn to talk, to dance, to play games, to read books, to live on their own? So many questions. So countless worries. So much fear.
In my research, I detected 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 is correct. 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 announced me and let me know she was there for me if I needed anything. My mothers were supportive and adoring. Ben’s mothers as well.
Most friends and other relatives were supportive, but too a little unsure how is a response to our information. A few friends and family gave us the “I’m sorry” and “special beings get special kids” mentions when we told them the information. We likewise a listen “we’re praying for the. 02 percent, ” meaning praying for us that our child wouldn’t be born with Down syndrome. I know everyone necessitate well, but even in those early days, each negative note, heartbreaking glance, or dome of the eyebrows in startle felt enlarged to me. With each negative response, I questioned myself and our unborn baby. Ben was placid about the diagnosis. I could tell it was on his thinker, 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 horrors about our babe were always based on what our life experience lacked; Ben and I both had very little familiarity with parties of differing cleverness. How would we be able to take care of someone “different”? Can we do this?
At some degree during all the reading and research, I began to settle into my new reality. My child would be born with Down syndrome; I couldn’t convert that.( At the time, I probably would have if I could, but now, I’m so grateful that changing wasn’t policy options .) I could do my best to be prepared. I began to feel pride in knowing something about my babe before we ever gratified face to face. I learned about the different types of Down syndrome, the admitted colloquial 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 hours 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 liquor check ultrasound at my regular doctor’s office for one appointment Ben couldn’t construct. Overall, the checks on Baby’s heart and other vital organs came back negative. Down syndrome was the diagnosis, but no other complications were participating. Because of this, I had the choice to continue with our original delivery proposal 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 regular. Big belly, large-scale boobs, stretch gasps. Ben and I rope up our Cocker Spaniel, Nola, and headed out for a morning move. I did a lot of walking once the snowfall and ice defrosted. I love to be outside and sauntering facilitated me clear my principal during those final pregnant months.
About a half mile from the chamber of representatives, I started to feel some cramping. “Slow down a bit, ” I said to Ben. We trod on and the cramping has now come croaked. Home from the foot, we decided to take a quick trip to the grocery store. In the cereal aisle, the cramping hit again. It felt a bit more painful, and the think intersected my attention- Is this proletariat? 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 luggage, in cases where, ” I said to Ben when we got home from the food market. I propelled in a nightgown, reform of drapes, and my toiletries. Ben did the same.
Ring, echoing, resounding. “Your sister and I are in town. Do you want to grab lunch before your appointment? ” my mummy asked me over the phone.
Ben and I assembled up with my mommy and sister at The Curragh, an Irish Pub in downtown Holland just a few minutes from the Hospital. When we arrived, they had already succession my favorite, cheese puts! I sat and then began chafing at my belly with a slightly ached expression.
“Are you okay, Katie? ” my mummy asked.
“Yeah, just some cramping a bit.”
Her eyebrows shot up. “You could be in labor! ” We chitchatted and ate menu for a while longer, but I wasn’t feeling very hungry. Just before we left to go to my scheduled ultrasound appointment, I expected my sister if she wanted to join.
She hasn’t had teenagers of her own more, so this was an opportunity for her to see a newborn in the womb. “I’d love to! ” she said.
All four of us- Ben, Mom, Sister, and I( five if you weigh Baby !)- checked in at the hospital for the ultrasound. The area was vast, so they granted everyone in. The ultrasound tech was an older woman with short-lived hair and glass. My sister sat close to me, so she had the best view of the screen. Ben and my mama stand against a back wall with a deem of the screen as well.
“It’s unique to need an ultrasound this late in your gestation, ” the tech said to me.
“It’s only a checkup- my fluid grades were lower than they wanted to see at my last-place 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 was better glitches me a bit now. Good for me for what? For going through with having a baby with Down syndrome?
To triage I was communicated while the ultrasound arises were reviewed. They named me up on an NST, wrapping my large-scale belly with a tight circle to monitor baby’s heartbeat. Mom and Sister stepped out; to where I’m not sure. Ben remained with me in the chamber and we snapped through a few paths on the TV.
About 30 minutes later, a Doctor came in and told me my liquor stages were extremely low. And, I was in pre-labor. Alas, those cricks were labor stings! 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 munch? ” a wet-nurse asked.
“Not much, ” I replied. She produced me some cheese and crackers and a turkey sandwich. “Once we got to get in your area, 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 wink I guessed I’d go with a natural delivery … More aching. Epidural.
Ben announced 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 site my mommy threw my fuzz in a ponytail; I couldn’t get it on with the cables and IVs all over my arms.
About 10:00 pm the pressure down there started to feel stronger and stronger. My mom and sister were in the room and I began to cry. Ben ambled over to me, hampered my hands, and propagandized hair out of my face. My mom said, “I love you, ” and she and my sister left the room. Later, mummy would say she could tell it was almost time for babe to arrive because of my rapid emotional state.
We waited a little while longer and I finally would like to know whether I could start pushing around 10:40 pm. Breathe. Push- 1, 2, 3, 4, 5, 6, 7, 8, 9, 10. Breathe. Push. “You can do this, ” the female physician said. “You’ve got this, push push push.” In just a few minutes, I could feel Baby’s head pinnacle, and it stayed there in between pushes.
“I don’t like it! I don’t like it! ” I retain saying to Ben. One more large-scale propagandize, and out slid Baby. Born at 10:50 pm. An unlocking of our hands, Ben unfolded away. I couldn’t receive him. Then all the sudden he was back, his nose practically touching pit. “It’s a son! It’s our Jameson! ” he smiled.
The doctor residence Jameson on my dresser. He fidgeted and wiggled, but there wasn’t much crying. He met reverberates, but they only loosened, almost like mumbles. I took in his soft skin. His smell. His wispy clump of obscurity mane. His small eyes, like little almonds. His puffy cheeks. I weighed each list of paws and each place 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 suspicion, if he would be born typical. But I could tell. Jameson has Down syndrome. My heart broke a bit at the time, bank on all of the signs and tests going it wrong. And more, there I was nursing this living being, created with desire, who needs my adore now more than ever.
About 15 hours into skin-to-skin, Jameson was moved away to the bassinet near my berthed for a few checks. They were looking at his colouring, insignificant jaundice perhaps, and checking his heart and his lungs. Ben stepped out of the office at this time to tell our waiting household the big story. A baby son- a health child boy.
After a few hours as a new family unit, we opened the door for category to meet Jameson. Smiles. Tears. Hugs. “Congratulations! ” The excitement died down, and Ben and I were left alone with our new child once again. We maintained Jameson in the chamber with us throughout our stay at the hospital. Ben converted various brand-new baby nappies- that meconium, black tar like stuff. We invested minute after minute i look around at him, savoring him like a piece of debased chocolate patty you only can’t get enough of.
The morning following Jameson’s welcome into the world, a infirmary liaison came in with a volume 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 knowledge. “If you want to talk to other parents at all, ” he said as I left the room.
Ben and I each had minutes of total and ended ambiguity, feeling, sadness, and dread while staying in that hospital room. There were cries of glee and happiness, but too cries of affliction and anxiety, indecision and remorse, cries for the loss of what we foresaw our lives would be, and rends as we wondered what our lives would be like from here on out. What does Down syndrome means 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 auto fanny that examined way too big for him.
We spawned it. We attained it through all the what ifs since our 20 -week ultrasound appointment. Jameson was here. A living, breathing, sleeping, ingesting human being. Down syndrome or not, he only needed us to adore 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 novelist friend to a third-party publisher. I started a GoFundMe to help cover costs. I hired an illustrator to turn my statements into visual muse. And, I started the commitment to donate $3.21, for Trisomy 21 Down syndrome, of every diary sold.
Jameson spent a few eras 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 exactly 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 beset us throughout my maternity, how will we do this? We only do. We make every day as it comes. We adore perfectly. We allow Jameson to be Jameson.
“We are all different, our shapes and our sizes, our color of bark and care. But still we’re the same, and we need one another to affection and listen and care. You are you and I am me, simply exactly how life is meant to be, ” as mentioned from my book I Am Me.
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Katelyn has a Master’s in Organizational Communication and a beloved for mission-driven work. She is a mother to a son with Down syndrome and an energetic cocker spaniel. She is married to her high school sweetheart and author of the children’s book I Am Me. You can follow her on Instagram @katelynshae
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