TRISOMY TWENTY-ONEderful | Down Syndrome Child Blog
This blog is a vault of thoughts and, of course, the daily adventures of life with Tessa and the rest of their family. Here you will read much about the life with Tessa and how her Down Syndome has made a big impact on all of them.
These are some of the concerns raised by a team member during this year’s annual IEP meeting as we prepare for third grade. I get it. Her size, lack of skill, coordination and stamina could be cause for worry. Don’t get me wrong, I’m grateful for a team that cares so much for her and her safety.
However it looks different from our perspective. If we withheld her from every activity that made us worry, she would likely never leave the house. We’ve had to challenge ourselves as parents to see beyond the fear and the worry in order to open more avenues of success.
In life, we have two choices–we can either settle or we can find a way; something we learned quickly after hearing that our daughter was born with Down syndrome. While one may focus on the negative, we chose to alter each limit with one simple word.
She can’t use a jump rope…yet.
She can’t jump over a low hurdle…yet.
She can’t do an agility coarse…yet.
She can’t run a mile…yet.
She doesn’t control her impulsiveness…yet.
You know what else? She can’t do her own laundry, cook a meal or drive a car…YET. She can’t write her name in cursive or do long division…YET. She can’t babysit or ride a bike without training wheels…YET. No, not yet; just like other kids her age. But we believe she will. Maybe not today or tomorrow. Maybe not next year or the year after. But when she is good and ready.
And should those things never come, we will be proud knowing that she gave it her best shot. We’ve seen her jump hurdles higher than the ones you’ll find on an agility coarse, and those are the ones that matter the most to us. If we only focus on the things we can’t do right now, we will never know what we can truly achieve.
As for all of the these things she can’t do now…she just hasn’t done them yet. Her capabilities far exceed her limitations.
She sat on the floor for the last round of practice. It was only the second dance practice they had attended. I got within her line of sight and signed to Tessa to stand up.
She refused. “My side hurts too bad mom.” I knew better and I signed to her once more…stand up. She stomped her feet two times and exclaimed that she couldn’t do it; that she just couldn’t keep up. “Yes you can,” I reminded her.
When practice was over, she pouted all the way to the car. “I’m not good at dance mom. I did really bad.” No matter how many times I reassured her that she did great, she remained discouraged. About a mile outside of town, she began to cry. I began to say something again with the hopes of boosting her spirits; but her younger sister interrupted me, and I let her take the lead.
“Tessa, listen. If you think you’re bad at something, then everyone will think you are bad at it. But if you think you’re the best, then you are the best no matter what!” My eyes were glued to the road ahead of me as I absorbed her beautiful words, so simply stated.
She continued, “…your robot move was awesome! I think you did it better than me for sure! This is our first time doing dance, and we have to keep practicing to get better, okay? So don’t worry about it.” Tessa sniffled once more, and agreed with what her sister said. Together, they sang Christmas songs the rest of the ride home.
Who was this wise old soul sitting in the back of my car, and what did she do with my five year old daughter? I guess all of that Full House watching has really paid off!
When we got back home, I shared with my husband what had just transpired during our ten minute drive home. He pulled Kendal into the living room and told her how kind she is and how proud he was of her genuineness in helping her big sister feel better.
There have been few moments in parenthood that have actually rendered me speechless, and this was one of them. While our youngest daughter certainly does challenge us with her strong will and spirited personality, she also has the innate ability to encourage and uplift.
I often question myself as a mother. For me it just comes with the territory. Always wondering if I am doing a good enough job to ensure our children are compassionate to those around them, but never quite sure that they fully grasp the concept. Hoping each morning that when they walk out the door, they go with open hearts to share with others.
“While we try to teach our children all about life, our children teach us what life is all about.”-Angela Schwindt
Raising children isn’t about how perfectly we do it. I know because I am far from perfect, and my youngest girl just swooped in and saved the day in true Danny Tanner fashion.
Sometimes our kids lead the way for us when we can’t figure it out. More and more, we’re letting them.
Five years ago today, we received a phone call. Earlier that morning I had taken Tessa to the hospital to get her labs drawn. She was on a wait and watch protocol for Myelodysplastic Syndrome, and we knew at some point she would likely transition to leukemia. Many months led up to that moment in our living room where my husband and I sat together while listening closely to the voice on the other end of the phone. She had only said my name and I knew. Before she could finish her sentence, hot tears streamed down my cheeks.
Even though we knew this was coming, we still clung to the little bit of hope that this was all a mistake. That her labs and biopsies were incorrect. That there was a chance she could avoid treatment. It was something we told ourselves on the surface to save face; all the while knowing that this was inevitable. Our daughter had cancer and lives shifted forever.
Her body was covered in petechiae. Her skin was as pale and mottled. She was weak and miserable, crying in our arms. Our baby was sick…really sick. On the phone, the doctor urged us to get her to the hospital immediately. She told us to pack bags for at least a week long stay in the hospital while they ran more tests to figure out the best course of treatment. In the midst of packing, I remembered our six month old baby at daycare and my heart shattered. What would happen to our family?
Before leaving town, I pulled up to our daycare to see our littlest babe while my husband and Tessa waited in the car. Unaware of our troubles, her face lit up with excitement when she realized her mommy was there. As I scooped her up in my arms, I wondered when I would get to see her again. I walked away from that house not knowing if that terrible disease would take her big sister from her. Fear won that day and several days to come.
The hours that followed are now muddled memories. People rushed in and out of our hospital room, throwing medical terms and phrases at our blank faces. They asked questions we didn’t have answers to and said things that didn’t make sense.
There were treatment road maps, complicated documents that required signatures, beeping machines and many unfamiliar faces. The food trays that the nurse had ordered for us were cold and untouched on the counter. I quietly rocked our girl to sleep as she received blood products for the very first time, desperately trying to wrap my head around how we were so swiftly caught in the undertow of our current situation.
This was our life.
A small, but significant chapter, in the big book of us.
Like a puzzle, our pieces remained scattered. Each piece just as meaningful and necessary as the next, despite how confusing and frustrating they were on their own. Sometimes coming back together, only to be broken apart again and again.
But even apart, we were whole; and when all of the pieces aligned just right, we created a beautiful scene.
Every year on this day I recall our heartache and desperation. How I spent the first night on that cold hospital bed, hopelessly bargaining with the man upstairs to let me take her place.
For parents like me, diagnosis day isn’t something we can escape. It may become less obvious in time, but the effects of that day linger. From how we plan and prepare to how we confront and overcome, and everything in between.
I do not relive painful anniversaries for the sake of sorrow, rather to remind me how far we have come. To remember the mountains we moved when climbing them wasn’t an option. To pay homage to moments that changed our course; acknowledging that we absolutely can handle hard things in life.
“…they’re just so happy all the time; not a care in the world. I envy that…”
She said this to me yesterday morning in casual conversation; referring to people with Down syndrome like my seven year old. She was sweet as she spoke, and I could tell she was genuinely coming from a good place.
My mouth wide open, unable to respond, I briefly closed my eyes and took a moment. I know myself and I likely wouldn’t have said anything if I wasn’t getting my teeth cleaned so I withdrew to my comfort zone where I process and write it out later. I also just got home from a retreat for moms of kids with Down syndrome, and I’m feeling a little soap-boxy and inspired.
This phrase…sigh. The “they’re always so happy” phrase. If you have a child with Down syndrome, you probably know what I am talking about, and maybe you can relate. It doesn’t offend me, I swear. Believe me, there are far more harmful perceptions than this. It does, however, carry a certain sort of ickiness that implies individuals with an extra chromosome are angelic. A common blanket statement that groups all people with Down syndrome by suggesting they live their lives blissfully unaware of knowing anything other than happiness. That they carry on without having real feelings. I’ve never heard anything so well-intended that makes me grimace as much; and yet I hear it often. The frequency of this sentence tells me how much farther we have to go so I’ll share my two cents.
Having Down syndrome has not shielded my daughter from experiencing a wide range of emotions. It also has not hindered her ability to process them either. I know this to be true because I have fought back tears as she cried in my arms when she felt left out. I have watched quietly from the other room when she tells her little sister she is annoying her at breakfast. I listen as she expresses her frustration every morning when she attempts to tie her shoes independently. I’ve witnessed her prideful victory dance after she whooped my butt in game of Trouble. She has screamed with excitement when she received a birthday party invite from a friend only to be incredibly jealous when her sister got an invite of her own a few weeks. And if someone ticks her off, you better believe she will let them know.
My daughter is compassionate and shows empathy toward others accordingly. She knows the weight that words can carry, and she absolutely feels it when they are used to hurt. She cries when she is upset, and sometimes she yells when she is mad. She laughs when she finds something funny and hugs when she feels the need. She says things like “I love you,” “you’re the best,” “you’re driving me crazy,” and “you’re a meanie-head,” and she means all of it.
An extra chromosome doesn’t mean her thoughts and feelings are the exact same as any other person with Down syndrome. She is not a carbon copy of someone else. That forty-seventh chromosome doesn’t make her live in a state of constant happiness. Nor does it mean she is always nice or that she never makes mistakes. She, too, learns life lessons the hard way and apologizes when she has let someone down. She certainly is not happy all the time, and we do not expect her to be.
Like our other children, we encourage her to express herself any way that is comfortable and share how she is feeling. To say when she feels hurt, angry, abandoned, sad, frustrated, annoyed, uncomfortable, joyful, bored, amused, confused, nervous, excited, ashamed and of course when she is happy.
She is a real person who is capable of understanding and experiencing emotions, complete with her own set of thoughts and views on life. Just like you, me and every living human being, she has feelings and they are valid. To suggest anything otherwise devalues her and everyone else that this phrase is intended for. We can’t possibly envy something we all experience, even if it may translate differently from person to person.
Appreciate her honesty and genuineness. Acknowledge her feelings and know that she is aware of the world around her. None of which has anything to do with the fact that she has Down syndrome.
The middle of August means that summer is on its way out for the year, and the start of a fresh school year is just a couple of weeks away. Our summer bucket list was non-existent this year. We spent most of our days at home; sleep deprived and super laid back thanks to our newest and sweetest addition, baby Dax.
Our summer has been full of therapy appointments, summer school, doctor visits, baseball games and deadlines. If it isn’t in mom’s Google calendar, it ain’t happenin’ kids. *Insert shrug emoji*
Adding a new baby into the mix has certainly kept our days (and nights) even more full outside of our already packed schedules; leaving little time for epic memories moms often feel pressured to provide their kids with over summer break. And guess what? The children have survived without a full-fledged family vacation or so much as a day trip to the zoo, beach or water park. Maybe next year when life settles back down. You know, when the baby is one; likely walking around and getting into everything.
Don’t get me wrong. I enjoy a nice, stressful family vacay just as much as the next parent; but it wasn’t happening this year. To be fair, our kids needed a summer like this. They’ve had it real good in their short lives and have enjoyed plenty of special trips and events. It is okay for them to understand that mom and dad are not the sole creators of good childhood memories. That they can do so creatively without leaving home or spending lots of money.
Summer break this year is nice because I am on maternity leave, which means lots and lots and lots of time for me and the kids to spend together. And by nice, I sort of mean crazy. It is absolutely bananas around here most days; good and bad. Occasionally I’ll respond to yet another round of tattling with phrases like “I don’t care,” or “…figure it out yourselves.” Anyone else or just me?
It isn’t that I truly do not care, it’s more so that we have all been home together for several weeks on end and they have been tattling on one another for the same stuff every single day. Also, have I mentioned I’m currently functioning on little to no sleep? I don’t think I need to intervene because one sister called the other a “poopy head.” That can be handled amongst themselves. I have real poop issues to tackle with the infant of the house.
I’m going rogue over here, ya’ll…
We have reached the do-whatever-you-want phase of summer; where it’s all running through the sprinkler in their clothes, premade cookie dough, eating popsicles in their undies out on the porch, not always fitting veggies into the meals, constantly sporting mess faces, 4 o’clock naps, literally never wearing shoes and staying up way later than they should instead of trying to get into school bedtime routines.
Based on how happy they are, perhaps I should have ran out of sh*** to give as soon as school got out. But you know, mom guilt is a real thing. As an avid planner that struggles with anxiety, letting things happen candidly isn’t always easy for me either.
In light of this revelation, we’re riding this chill train straight to the end of summer. Because dang it, it feels good. It’s the kind of summers I often grew up having and actually really appreciate now that I’m a mom.
While we didn’t deliver on big moments this summer, there was no shortage of little ones. And that makes this mom’s heart sing all the feel-good songs.
Hang in there guys. One day we will be wishing for all of this again.
In keeping with tradition on this blog, it is only fitting that I share Dax’s birth story. It’s a good one. At least my husband and I think so. But I will warn you–if birth stories aren’t your thing, this probably isn’t the post for you. This was an incredibly memorable delivery experience, and I am documenting it so that I always remember the realness and perfection of his arrival.
Also please excuse my hormones as they seep into this post. I am totally submerged in newborn bliss, and I cannot seem to get enough of life with this baby boy. Today we celebrate three wonderful weeks with him.
Since I didn’t blog throughout my entire pregnancy, I will share some of the backstory. At my six week postpartum checkup after my c-section with Kendal, my OB told me that I would be a perfect candidate for a vbac (vaginal birth after cesarean) in the future if we were to decide to have more children. He strongly encouraged me to think about it. At the time I didn’t give it much thought and having more children was the furthest thing from my mind at my six week check.
Fast forward four years when we finally decided to add one more to our crew. I recalled the vbac conversation vividly and wanted to explore this option. My doctor was on board right away and believed this would definitely be something to consider.
It isn’t so much that I hated my c-section. I am all about getting baby here safely, and that is exactly why I had to have a c-section with Kendal. It is more about the recovery process I wanted to avoid this time around. I had a rough recovery from my c-section, and I wanted to avoid that again.
Like most women, I am super busy. Adding the sixth member to our family surely wasn’t going to make life less chaotic. There were little things I wanted this time around after bringing home baby. I wanted to be able to go home and sleep in my own bed and not be bogged down by pain meds. I wanted to be able to take care of my girls right away or get up out of a chair without assistance. I didn’t want the limitations this time around if I could help it.
I have also struggled with coping and recovering from back-to-back birth experiences that were anything but standard. I desperately wanted this birth to go, well…perfect. As perfect as it could. I selfishly wanted to experience delivery as it should be; the way my husband and I had yet to.
My plan to attempt a vbac was intimidating. Especially when I had little to no support outside of my doctor and my husband. If I had a dollar for every time someone tried to talk me out of it, I would currently be on a hefty shopping spree for a new postpartum wardrobe. People tried to talk me out of a vbac in almost every conversation I had about it. Eventually I just stopped answering questions about my projected birth plan. This topic is an entirely separate post about things people say to pregnant people that I have sitting in my draft file, but I digress.
I did my research and sought out support. Our OB and family physician worked as a team to support my pregnancy and answer all of my questions along the way. They also instilled confidence in me at each appointment. Having a vbac was important to me; and even though I was admittedly anxious and scared of the what-ifs, I did not lose sight of my goal. Knowing that I could elect to get a c-section if I changed my mind, I did make a deal with myself and my baby that I would not endanger him or myself with crazy interventions for the sake of a vbac. I did not need a natural delivery that bad that I was willing to risk his or my health in order to get what I wanted. There were lines I was not willing to cross and thankfully the hospital’s guidelines echoed my wishes. This was a no pressure situation; and we were all just hoping that under perfect circumstances, I would spontaneously go into labor without complications.
I had a relatively smooth and uneventful pregnancy; similar to those of my girls. The only major difference for me this time around was that I continued to eat a healthy diet and exercised almost every day; a lifestyle commitment that has been essential to my health the last four years. Outside of the general discomfort that can come with being pregnant, I felt pretty well overall.
The last few weeks were hard on me physically and emotionally; however, I admired my body’s ability to grow and change for our baby. Knowing this was our final pregnancy, I tried to remind myself that soon enough I would miss every moment of pregnancy–even the particularly difficult times.
One week before delivery – 37 weeks
Starting around week thirty-three, I started to experience prodromal labor (false labor) regularly, which was pretty alarming. We certainly did not want him to arrive that early. My doctor advised me to get some extra rest and to reduce my activity some. We also began monitoring baby with fetal non-stress tests (NST) weekly as an additional precaution for his slightly reduced heart rate. The additional rest and non-stress tests helped ease my mind that he was doing well while preparing to make his arrival.
For the better part of my pregnancy, my husband continued to make the prediction that our son would be born on his birthday; which was two weeks before baby’s due date. In fact, he was absolutely certain that was the day he would be born. I disagreed. Out of all the days he could be born on, it seemed unlikely to me that they would share a birthday.
The night before our son was born, I had another fetal NST at 4:30 p.m. at the hospital. I hadn’t been feeling the best that day, but I wanted to make it to my stepson’s home baseball game. Given the fact that I had been having contractions for weeks, I paid little attention to strong contractions I started having an hour after my NST. We were packing up the car to head to the game and the contractions only got stronger. They continued to intensify over the next two hours; lasting for 45-50 seconds every five minutes and gradually getting closer and lasting longer. At the end of the game, I suggested to my husband that maybe our girls should go to their grandparent’s house for the night…just in case.
At this point, I began to accept that I was most likely in labor. I had already communicated with my doctor that I believed it was baby time. That complicated mix of emotions rushed over me; fear of the unknown, excitement to meet our new baby, gratitude for the experience, sadness for the end of another pregnancy, anxiousness for the delivery. It was time.
I knew I had to stay as relaxed as possible and let my body do its thing. I grabbed my exercise ball and bounced for just a few minutes in my bedroom. Eventually I took a bath and continued to wait it out. Next I tried to rest but wasn’t able to do so for long. Just before 11 p.m. I decided it was time to head to the hospital.
The next five and half hours were a whirlwind. Upon arriving at the hospital, I told Dan to leave our bags in the car. You know…so to not jinx my obviously imminent labor. Even though I could see he thought this was ridiculous, he knew enough in that moment to comply with my wishes. Bless his heart. Once we were in the OB unit, we were set up in our room. The same nurse I had with Tessa and in the same room where I delivered her; as if the beginning and end of my delivery experiences had come full circle.
That realization hit me unexpectedly, and it took so much to control my emotions. I recall expressing to my doctor that I was suddenly very scared of the impending delivery, and that I was not sure if I could do it. There is a lot that she and I had endured since my first pregnancy. She had seen me at my most vulnerable in my worst moments; not only delivering both of my girls, but delivering two of Tessa’s life-changing diagnoses over the years. In typical fashion, she calmly reassured me that I was fully capable of this delivery and that everything would go great.
It was well after midnight, and labor continued to progress as expected. The pain during contractions was mostly tolerable, and I felt in control of my pain. Because of that, I was able to move around more freely. Dan turned on my favorite Pandora station…Johnnyswim Radio, but I remember the playlist that night being absolutely terrible. Somewhere after 1 a.m., I looked at the clock and laughed, then turned to Dan and said, “Happy birthday. Of course you’d get exactly what you want.” He was going to get his birthday baby after all. Anyone that knows Dan well, knows exactly what I’m talking about. I don’t know how or why, but things just seem to go in his favor…a blessing and a curse, really. Naturally he was thrilled with this series of events playing out just as he had always imagined it would.
Dan caught some sleep while things continued to progress. At some point, it was decided that baby needed to be monitored more closely so our OB attempted to place a probe on his head. In the process, my water broke and things immediately progressed. My contractions became so intense. It quickly became unbearable and the pain escalated to new levels. Yet I had still managed to go without any pain interventions. I also wasn’t aware that my body was transitioning to the end stages of labor since this was the first time I had experienced labor without pain medications. Dan was an amazing support system. He was right by my side, encouraging me and telling me how proud of me he was throughout all of labor. I was equally proud of him for being so wonderful to me in such an intense couple of hours.
The time came where I was physically and mentally done. In my mind, I could no longer continue. The pain was far too great for me to manage, and I felt like I was losing all control. Knowing there was still a window for an epidural, I put in my request to get one. I hear this is the time where moms typically say “I can’t do it,” which is funny because I probably said it 452 times while I waited for the anesthesiologist…among many other choice things that spewed from my mouth during that time. By the time he arrived upstairs to administer the epidural, the pain was excruciating. This poor man…it was 4 a.m. I shot him a glare as though he owed me some sort of explanation as to where he had been the whole time, scribbled my name on the consent form and tried to get back on the bed. But I felt it…an incredible urge to push. This baby was coming out. I expressed that I needed to push. They advised the anesthesiologist to wait while they checked me. “Yup, you’re at a 10. Complete. Baby is right there and he can come out right now Becky.”
Like right now?! Fear took over and by that point I was totally inconsolable. There was no way I could do this without the epidural! We were so close, but the thought of pain medication sounded so much easier; so much safer. They reassured me that all I had to do was push a couple of times and he would be out; that I did not need the epidural. However I was adamant and continued to demand the meds. Finally the OB grabbed my hands and talked me off the ledge. The tone in her voice let me know she meant business, and gave me the final voice of encouragement I needed to get my baby here. A few seconds and barely two pushes later, he was out. Though his cord was wrapped around his neck three times, they quickly freed him and then placed him on my chest as my husband held my hand–a first time experience that I had dreamt of my entire pregnancy. I felt an incredible surge of pride; like I was capable of doing anything. I really did it.
Dax Daniel was born on his daddy’s birthday, June 23, 2018 via successful vbac. He weighed 6 pounds, 6 ounces and was 21 inches long. Not only does he share a birthday with his dad, he looks just like him as well. He was long and skinny with little wrinkled arms and legs. He had dark hair that covered his sweet head and ridiculously long toes.
This perfect meeting, forever etched into my heart.
It still amazes me how quickly the pain subsides immediately after delivery a baby. How our bodies can transition so quickly from one feeling to the next; the most unbelievable torment to incredible bliss. Making us forget (momentarily) that the pain had even happened at all.
We are still adjusting to life with a newborn again and how to be a family of six. We’re a work in progress, but it is going well. Dax is the perfect addition to our family and we adore him.