I grew up with a lot of privilege. We weren’t rich, but weren’t poor either. I went to Catholic school from Pre-K through Eighth grade, followed up a public high school experience that was enriched with fabulous teachers and a great group of friends. After that was Texas A&M which opened up career opportunities of my choosing. I grew up believing that opportunities are what you make of them, that we all have a vast world to chase after, with just hard work and determination anything is possible. What I didn’t know was that my position in life granted me those opportunities.

I hear a lot the Regan is lucky or blessed to have us as a family. The truth is we are the lucky ones. This is just another example of how much she’s opened my eyes with compassion and empathy.

What I’ve realized is we don’t all have the same starting line. I will be honest – I used to get frustrated at the idea that universities, corporations, classrooms, social organizations, board rooms would strive to have a certain percentage of seats filled with protected classes. My thinking was – shouldn’t the person who is best suited for the role get the position, regardless of race, gender, ability, etc.? Isn’t that true inclusion? It’s a valid argument, but it presumes that everyone in the world is presented with the exact same opportunities. I heard a quote from the basketball coach on the Netflix series Last Chance U that basically said ‘Yes, we all have the same opportunity, but some of these kids’ windows of opportunity are SO SMALL that they have just one chance to get through. If they have no one pushing them, forcing them through that window, they may never have a chance to get out.’ He was referring to his players in underserved and low income communities. While I’ll never experience this hardship, I can now appreciate the sentiment as I raise my children and advocate for just opportunities for individuals with disabilities.

I am just at the tip of the iceberg in Regan’s education experience, and there’s a part of me that is bracing for impact. Legally and technically, Regan is entitled to an education in a setting of the least restrictive environment in our neighborhood school. I am so proud that our laws dictate this, but I will still need to advocate for Regan to be in a classroom alongside her typical peers. This is the difficult side of raising a child with a disability. Regan will go through testing, assessments, evaluations of physical, occupational, verbal and social skills to determine if it’s “appropriate” for her to be in a typical classroom. If you have only typical children or if you grew up as I did, you likely never had to justify your place in a classroom. Your behaviors weren’t analyzed, you weren’t tested on what you knew before starting each grade level, you didn’t have to prove your place in the world just to have a seat at the table.

As her mother, I am protective of Regan. I know she not only deserves a seat at the table, in the classroom, in social situations, but makes those settings a BETTER PLACE because of who she is. It’s not Regan’s job the convince the world she deserves to be here. It’s our job to embrace others who are different from us, save them a seat next to us, and celebrate them for exactly who they are.

This is why INCLUSION MATTERS. I encourage you to take a look around your family’s settings. If you aren’t seeing people of all walks of life, colors, and disabilities, it’s not because those people don’t exist. It’s because those people (for whatever reason), have not felt the open arms of inclusion in those settings. Inclusion requires ACTION from us (me too!) Inclusion won’t necessarily look the same for everyone – but an fully inclusive environment should be the starting line.

Special needs classrooms are the last remaining form of segregation. Regan won’t graduate from school to a “special” world that isolated from her typical peers. She’ll graduate into the REAL world, full of challenges and hardships that we all face. Her education experience should be the same. Her typical peers won’t graduate into a world where the “special” students graduate into a separate workforce, separate housing, separate social settings. Why should her typical friends be robbed of an educational experience that differs so significantly from the world we all live in? Did you know typical children also benefit significantly from inclusive settings? Countless studies have proven students in inclusive settings achieve friendship skills, peer modeling, problem solving skills, positive self-image, and respect for others. This can trickle down to their families as well, teaching parents and families to be more accepting of differences.

I wouldn’t know this gift without having Regan. She has changed my world, my mind and my heart in more ways than I can count, and I won’t stop shouting her worth – along with the worthiness of all individuals with disabilities – until inclusive settings are the starting line.

The generation of parents before me have shouted so loudly that many students with Down syndrome and other cognitive differences and disabilities are now being welcomed into university and higher education settings! We are celebrating that by supporting Ruby’s Rainbow – an organization that provides higher education scholarships for individuals with Down syndrome! Organizations like Ruby’s Rainbow show colleges and universities that there is a seat at the table for these students and they’re listening!

Join us in shouting the worth of these incredible students by taking the 3.21 Pledge –

1. Make a one time $21 donation that goes straight to college scholarship recipients.
2. Pledge to be kind to ALL people and commit to inclusion in your environments!
3. Share the love with three of your friends <3

https://321pledge.org/share/megan-vowler

P.S. Regan is home from surgery and doing so well. She is comfortable and relaxed and we’re counting down until she can walk again! Thank you for all your love, support and prayers. Today and always.

The Missed Miracles

I’ve spent a lot of time praying lately, specifically praying for miracles. Miracles for myself, for my family, for this sweet baby, for friends I’ve known for years and friends I’ve made via social media. I’ve seen what feels like a lot of suffering over the past year – I imagine you’re reading this and nodding your head, too. It can be easy to succumb to the heaviness of it all and wondering why God hasn’t granted us “just this one” miracle. To be fair, I can think of about five BIG miracles I’ve asked for in the past nine months so I wasn’t really asking for “just the one.”

I’ve heard it said that God gives three potential answers to our requests: Yes, Not Yet, or I have something better in store for you. Here’s the thing – the ‘not yet’ or ‘I have something better’ still leave us yearning for that feeling of instant gratification, but the not yet and somethings better may be waiting for us on the other side of eternity. Phew, what a test of patience amiright.

But what about the in-betweens? Have you ever heard that Albert Einstein quote about miracles:

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”

What if we’re being granted miracles beyond our knowledge or understanding? This pregnancy has been a rough road. It’s been a roller coaster of emotions from the beginning, and I found myself wondering if there have been hidden miracles I’ve missed because I’m so focused on the big ones.

The first Maternal Fetal Medicine doc we saw reminded us following our “abnormal” NIPT screen (the test that screens for chromosomal changes) that it’s GREAT when we get a prenatal diagnosis. The benefits of parental education and early intervention for these babes is even beyond our current medicinal understanding. Babies’ brains are tiny sponges and now we have the ability to maximize those precious first few years to help this baby develop and learn in all the most beneficial ways.  Without the NIPT screen, it’s very likely we wouldn’t have a diagnosis for this babe until later in life – and now we have the miracle of knowledge and understanding and preparing our hearts for another chromsomally enhanced babe.

Without the NIPT screen, I likely wouldn’t have had as many (many, many, many) ultrasounds. This is how we discovered I also have vasa previa. This is another rare pregnancy complication (completely unrelated to chromosomal changes.) I’ll give y’all a very brief explanation – the baby’s umbilical cord is attached at the very edge of the placenta. This leaves a little too much extra slack on the cord. The cord is now hanging/stuck between the cervix and the baby’s head. The problem with this is – IF I go into labor on my own, the vessels in the umbilical cord will rupture resulting in immediate loss of blood flow, blood loss to the baby. It is highly life threatening to the baby if I go into labor on my own. So that leads us to where we are today: I’m in the hospital literally steps away from the OR in the event that I start showing any signs of labor. Assuming everything remains safe and cozy and baby continues to grow, we will deliver baby at 35 weeks. Since it’s too risky for me to go into labor, I will not go any later than 35 weeks. It is a miracle for which I am so grateful that we KNOW this and we are now doing everything in our power to protect this babe.

One of the concerns with any placenta issue (like the one I have) is that the baby could develop IUGR – intrauterine growth restriction. It is exactly as it sounds – the baby loses its ability to grow appropriately because of various issues with the placenta. Our babe was measuring a bit on the small side (around the 10-15%ile) where he/she was starting to border on IUGR diagnosis. This in combination with the knowledge that baby will be born early was starting to get scary. And then BOOM at the last growth scan, baby measured in the 30%ile. After everything through this pregnancy, this miracle was not lost on me. We continue to pray for a big healthy 35-week baby!

I still pray for the big miracles – healing of any major health complications for this baby, healing of baby’s chromosomal challenges, safe and healthy delivery at 35 weeks to a big baby, we are praying for no lung/breathing issues (due to early delivery), no feeding issues, and a big prayer for no necessary NICU time. Our hearts are open to all the answers we’ll receive, and in the in-between time we’ll give thanks for the miracles we may have otherwise missed along the way.

We cry and we celebrate and we cry again and celebrate again. Is this the life of parenthood in general or just those of us who walk the path with our kiddos with special needs? It feels extra hard some days. I wish our life didn’t feel so crazy, and I wish it didn’t feel unfair. For my kids and selfishly for me. Most days now I can laugh about the statistics and how often I’ve heard the phrase “this is so rare.” But today is one of those days when the same thoughts feel like they are going to break me. I’ve questioned my faith but also have days where it feel so crazy that it MUST be a divine providence. I’ve questioned my own sanity but also have days where I can reason through the logistics of everything we’ve been thrown.

And this weekend, we celebrated. We CELEBRATED Regan’s third copy of her twenty-first chromosome because it introduced us to a world of beauty that I otherwise wouldn’t have known. The celebrations don’t detract from the exhaustion of life with special needs, but those days carry us through any burdens we have. There are sacrifices in all aspects of parenthood, after all. It’s just so much more acute with a child with special needs. But the celebrations are also so much sweeter. And the memories of the burdens fade so very quickly. A memory popped up on my Facebook the other day – one of those that reminds you what you did two years ago today. It was of Regan, at 2 years and three months, JUST beginning to stand on her own. I started calculating the timeline backwards in my head, remember when she REALLY started walking consistently. Y’all, she wasn’t full-time walking until she was 2 years and 9 months. How do I not remember that? In the same “memory” on Facebook, she also wasn’t talking. She was communicating exclusively via sign language. Today she is speaking in short sentences and starting to answer abstract questions like “What did you do yesterday?”

Did you know that some cognitive psychologists theorize our physical body is incapable of truly remembering pain? Rather, we remember emotions associated with pain. I assume my brain is performing a similar function here – I don’t remember the struggle, the exhaustion I had while Regan was learning to walk, unless I sit back and remember the emotions I have that associate with those memories. Instead, my brain is focused on the present – what we can celebrate that she has accomplished versus reflecting on the struggles of the past.

I am having a harder time coping with our new baby’s diagnosis when I compare to how I handled Regan’s diagnosis. At least that’s how it feels right now. But maybe my memories are skewed by the celebrations of the present. Right now my heart is longing for that normalcy where we can celebrate what IS and not cry about what ISN’T.

One thing I’ve allowed myself over the past few months is to let the tears flow when they come, and not be in a rush to “get over it.” The pain is there, and I’m allowing myself the validation that these emotions are raw for me.

So let’s talk about how baby 3 IS! We had a consultation with CHOP (Children’s Hospital of Philadelphia) last week and in general terms – baby is looking great. They did discover a small VSD (ventricular septal defect). It’s a small hole in the heart between the lower two chambers; the doctors are very hopeful this will close on its own in utero. No other structural abnormalities were found, which is wonderful news. If you thought our case couldn’t get any rarer, you’d be wrong. I also have a marginal cord insertion that could lead to hospital bed rest and other pregnancy complications (something called vasa previa.) SO if you have an extra prayer, some extra good vibes, energies and thoughts in your heart – we are very much praying this issue resolves on its own. This condition is also rare (ha!), and we’d love to fall into the very normal category, for once.

For now, we will embrace the painful days and enjoy the celebrations along the way, too.

Hank let me rock him to sleep last night. Not just the typical books and prayers, then bed, but a full head on my chest, falling asleep as I hummed the tune to the “Hail Mary, full of grace” hymn (my go-to lullaby since Regan was born.) I hummed and watched his tiny chubby fingers fiddle with his favorite blankie, scrunching it up and pulling it to his precious cheek – the same way I do right before I fall asleep each night. His eyelids get heavier with each rock, but I can’t bring myself to get up and put him in his bed. I know these nights are numbered.

Hank turned 2 this week! He has become such a big boy and I’m so proud of the way he’s growing up. Mitch and I often joke we have one child with each parent’s personality: Regan is a busybody, prefers a full meal (salad, included please), is persistent beyond belief, and would choose going for a car ride / adventure over shows any day. Hank could watch TV all day, wears his emotions on his sleeve, would choose a thousand snacks over an actual meal, and it’s not uncommon for him to sleep until well past 8AM when given the option. Hank is my child through and through. I’ve always felt he’s a bit of an old soul, but he’s also the very typical pesky brother.

Once I started to wrap my mind around what may lie ahead for baby 3 and our family, my heart immediately went to Hank. He’ll be the middle child to two very special siblings, but I don’t want him to feel any less special because of that. He’ll already suffer from middle child syndrome, after all. Those of you in families with 3 or more siblings know what I’m talking about – the middle child is notorious for keeping score, carefully tallying what each kid has received to ensure she wasn’t somehow shorted. I say “she” as an example only, of course.

In all reality, there has always been a part of me that was happily envious of my sister, BB – the middle child. She had this unique position in our lineup to have very close relationships with my oldest brother, Dan, and with the youngest, me. She was (ok, IS) the one who keeps us in order when we’re all together. She is just the right mix of oldest and youngest sibling – organized and planner-oriented, and also freely giving with her love; she’s the first person each of us calls when we need some sound advice. Her middle child syndrome is part of what contributes to her love language, acts of service. She is thoughtful and compassionate, and all of that is because she served as the balance between Dan and me. She is a guiding light, and I hope Hank can serve our family the same way BB served us.

My heart ached a bit for Hank at the beginning of all this. He didn’t CHOOSE to have siblings with special needs, after all. In the near future he won’t know any different, but eventually he’s going to know our family is different from most. I pray he can appreciate all the beautiful differences the same way we hope to live and embrace those differences today. Whether he chooses or not, his two siblings will shape him the same way Regan and he have already molded my heart anew. I hope he knows he has changed my life just as much as his two siblings. He is unique and special and sensitive in all the right ways, and I hope his middle child syndrome only continues to support those personality traits.

In the meantime, I’ll keep giving him milk in a bottle because he loves it and I hope he never stops saying, “Mommy holds you??” every time he wants to be held. I’ll hold you as long as I’m able, my sweet boy! Happy Birthday, Hank!

“I can’t believe this,” I’ve thought to myself more times than I can count in the past several weeks. It started at the beginning of my pregnancy, at around 12 weeks when we received some interesting results from our prenatal genetic screen. “Your results returned as ‘atypical’, there is an abnormal finding on chromosome 18 believed to be of placental/fetal origin.” Those are the words I received at a televisit with the genetic counselor once she had a chance to review my reports from the lab. It all seemed so gray, so noncommittal. After many conversations with the genetic counselor, it was determined this could’ve meant the baby had trisomy 18, a partial trisomy 18, a chromosomal deletion, or the abnormality could be confined to the placenta and have no effect on the baby. It also could be a test error. As you can probable imagine, I took a deep dive into Dr. Google. Fortunately, there is very limited information on these atypical test results, but my confidence grew as it seemed the statistics favor a test error or an abnormality confined to the placenta. We were scheduled for a 15 week anatomy scan where the maternal fetal (high risk) doctor would look for abnormalities and markers that would indicate a chromosomal issue. They found nothing.

We left feeling so confident our baby was healthy and this was all causing me a lot of useless anxiety. Typically babies with trisomy 18 have significant anatomical markers that are obvious even on a 15 week ultrasound, and the likelihood of a random chromosome 18 deletion or small duplication seemed so unlikely. We were happily sent home to return for a 20 week full anatomy scan where the doctors were confident we’d confirm no issues with baby.

Our 20 week scan threw us for a loop. The baby has a choroid plexus cyst (a small brain cyst), which can be found in healthy pregnancies but can also be a marker for Trisomy 18 when combined with other risk factors. Given our prenatal screen and this cyst, we felt called to know definitively if baby was facing any chromosomal abnormalities. We returned a few days later for an amniocentesis, where they draw a small amount of amniotic fluid to culture the cells and analyze the baby’s DNA. This is the only way to diagnose a chromosomal abnormality prenatally. Still, we felt confident the baby would have all the right numbers of chromosomes. We were told to expect results in 3-4 days. By day 7 we still had heard nothing. I wish I could convey my anxiety through all of this, but I wouldn’t wish it on anyone.

On day 8 (Friday), I finally got the call I was waiting for. Unfortunately, it wasn’t the conversation I was expecting to have. I FULLY expected the genetic counselor to confirm what I felt – that the baby is completely fine, and this was all one roller coaster test of patience. While I still feel confident the baby will be OK, Mitch and I have once again been dealt an unexpected hand.

Our baby has a rare chromosomal deletion called 18q deletion. It affects around 1:50,000 babies, though even that statistic varies. If you’re reading this and thinking “Wait… WHAT?!” then you know exactly how we’re feeling right now. We are shocked. Not only is this very rare, the combination of our other homie with an extra chromie (Regan) and this baby is essentially unheard of. It is very likely we are the only family in the country with this combination of chromosomal differences. Each of these abnormalities (Regan’s T21 and this baby’s 18q-) happen spontaneously for no known scientific reason. But sometimes answers don’t lie in science alone.

It’s not lost on me that one of my last posts I shared my envy that those people I love the most of such distinct passions and callings in life. I guess now I know mine. In some strange way, this is comforting to me. The rareness of our situations makes it somehow feel like it’s exactly what my family is called to be, and exactly where I am supposed to serve as a mom. I don’t want that to sound like this is easy for me; it’s not. This is a painful realization in so many ways, and selfishly, it’s not what I would choose. But we don’t always get to choose, do we? I am humbled by the support we have, and I’m not worthy of most of the responses I get when we share this news.

So – what does this mean? Unfortunately that’s not a question I can answer. This abnormality has a HUGE range of clinical significance. There are adults who go on to receive multiple degrees; a few don’t even know of their abnormality until adulthood. Some have significant health complications ranging from heart defects to hearing loss. Some have cognitive delays or behavioral struggles, similar to a child with T21. Most have some combination of the above. Even those who share identical deletions can have vastly different presentations.

With all that said, our role as parents remains the same. We raise our babies in a supportive and loving environment and we advocate like hell to give them all the support they need to be successful in life. I never couldn’t imagined the joy that Regan would bring us, and Hank is the perfect buddy who will test the patience of his siblings in the best ways. All of this feels very raw and painful and frankly unfair right now, but if I’ve learned anything it’s that you can’t know the joy that awaits the other side of despair. I’m looking forward to knowing that joy again and faithfully praying for grace and strength to take one day at a time. Here we go again, y’alll! Feel free to share our story as you see fit. We will take all the prayers and support we can get!  

Also – if you’re wondering about the statistical likelihood of this happening.. it’s about 1:1,000 for T21, Regan and 1:50,000 (or so) for Baby 3. The combination of the two lands us right around 1:50,000,000. Go play the lottery now and please share it with us if you win!

I am the youngest child in my family, so by the time it was my turn to learn to drive my parents were all but ready to just hand over the car keys. With three kids as swimmers, they’d had enough of the early morning drives to practice and the long weekend days spent at meets. I have a summer birthday, so I was also one of the last among my friends to get my license. I was eager to drive but I was a little low on practice when my mom rewarded my first Junior-year report card with her approval to get my license. In the state of Texas, all you need is a parent’s signature that you’ve completed the required hours of practice behind the wheel and a passed written test to get your license. No actual driving test required.  

So I was within reach of getting my actual license mostly because I was a decent student and my mom was tired of driving me everywhere. On a particular day of practice driving with my Dad, we were approaching an intersection very near our house when I started to drift from my lane. Something distracted me, caught my attention, and I stopped watching the cars in front of me. My dad hollered (if you know him, you know how rare this is), and I quickly came to a stop at the red light in front of us. As you know, things like this happen in a matter of splits of seconds so the order of events is a little jumbled in my memory. Regardless, the events that followed were not lost on me.

My dad RARELY gets worked up, and when I say “rarely” I mean I think I have heard him raise his voice (literally have never heard him actually yell) less than a handful of times in my entire life. The worst word I have EVER heard him say is “crap.” In fact, this moment is the only time I can specifically recall him raising his voice to me.

As I was saying, I brought the car to an abrupt stop. I’m sure my dad was slamming on imaginary breaks on the right-hand side of the car. The car stopped, I looked at my dad, and immediately tears welled up in my eyes. I knew he was upset. He said (in his stern but not particularly loud voice), “Meg, what you are driving is a WEAPON. You cannot forget that. You will drive where you’re looking, and you will go where your steering wheel points.”  

I recall this moment so clearly. It has stuck with me for nearly two decades now, and I think that singular moment made me a better driver. We have so many distractions in our lives now. I don’t know about y’all, but my steering wheel is losing its power steering this year. The media is hollering at us, and now we have obligations and societal structures that are making it harder to remember where we want to steer our lives.  It’s getting a bit loud out here, right? I hope I’m not alone in feeling like the noise is making it hard for me to focus. I forget where I’m looking. I forget where I was steering.

There’s something about the fall that helps me recenter myself. It’s my favorite season for so many reasons, and I love that the leaves change just before they fall. It’s like a reminder that there’s still time to change. And even a small change in the trees brings the most beautiful colors we see all year.

Did you have a goal for 2020? How about a special prayer or area of focus? Are you someone who likes to set intentions for the day, week, month, year? I’m trying to recall my intension for 2020. There are about 90 days left in the year. With all that’s happening in the world, I just want us to remember that we’re driving where our steering wheel is pointed. Make sure yours is pointed towards the intention that matters most to your heart.  

“T21 Trucking” was named for our daughter, Regan who has Down syndrome (also called Trisomy21 or T21.)