Welcome

God bless my Momma. I spent around five hours in the car yesterday, hauling babies to and from school, running errands, and running back and forth from my office to home to get my backpack that I left at home. I was complaining to Mitch about the irritation of needing to run back home AFTER getting to the office and realizing I left my work bag at home, and he said, “don’t worry. You only have about eighteen more years of this.” Woof. Kidding, not kidding, right? With each year I experience as a momma myself, I develop more appreciation, love and empathy for my own momma. She (and my dad!) selflessly hauled the three of us (my siblings and me) around the greater Houston area at all hours of the morning and night. We were swimmers, so I literally mean ALL hours of the day and night. For most of my childhood, she was driving us 30+ minutes to and from school, plus her commute to work, and drives to and from swim practice BEFORE and after school. I am physically exhausted just thinking about it. But this is just one selfless sacrifice she made for all of us to give us the structure and life we wanted as kids.

Our house was a busy one (clearly), with lots of comings and goings between all of us. And yet, at least most of the time, there was an organization amidst the chaos. My mom has a way of running her ship, no doubt passed down to her by my grandma (Mah). You see Mah had 9 kids and over 30 grandchildren, most of whom passed through her house daily. She didn’t have time for things to fall out of line. So my mom instilled in us what was taught to her –your room is a reflection of your life. And how often have you felt this way? When your space (your office, your bedroom your house, the playroom) is a mess, your life feels like it’s falling apart at the seems and you’re running around like a chicken trying to find your backpack before you get in the car for school or work. Such was my life this week – this constant feeling of breathlessness, like I’m treading water and waiting for the next wave to knock me out. It’s an exhausting feeling to say the least, and sometimes we need that straightening up from Momma to sort things out.

There is a lot in this world that is beyond our collective control. So here I am sharing my Momma’s advice with you – YOUR ROOM IS A REFLECTION OF YOUR LIFE. When my life feels like it’s starting to spiral out of control and I can’t keep up with all the comings and goings, I can almost always guarantee you my house is a mess at the same time. So my step one for re-organization is always to clean first, think second. My brain can’t seem to de-clutter itself if I don’t de-clutter my physical spaces first. A clean space is such a great visual cue for creativity, organization and focus! Don’t you always feel like just taking a deep sigh when you finish cleaning? It’s literally a breath of fresh air to your mind and soul!

How is your room, literally and spiritually? We are headed on a family trip soon and my spiritual space is ready for a cleanse! Some time with the ones I love the most in the fresh mountain air will give the breath of fresh air my soul needs. Now if only my house would clean itself before we leave…  

Do you ever wonder what mark you will leave on the world in your lifetime? How you’ll be remembered when you’re done and whether your impact is “enough?” I’ve been struggling with this lately – wondering what my true calling is in this world and if I’m fulfilling God’s plan for me and for my family. I look with HAPPY envy (I really believe there is such a thing) at my sister and my husband. They are two of the people I love MOST in this world and they really LIVE their passion every day. I love that about them, and I think each of them has already made a substantially positive influence in our world.

My sister (BB, Bridget, also Regan’s namesake and my life role model) works as an emergency room physician assistant, and she humbly serves her patients every day. God bless her, she’s been our family’s healthcare provider since BEFORE she even went to PA school. BB was just telling me her whole memory of our family’s life events is centered around medical events (my dad’s fall when he broke his leg in the 90s, my family’s bout with food poisoning, Regan’s heart surgery, etc.) She is patient beyond belief and can calmly and lovingly explain the most complex medical diagnoses. She is exactly the kind of medical provider you want when you walk into a hospital. BB has faithfully followed God’s calling and the world is better for her serving it in such a way.

My husband (Mitch, Mitchell, MFV, “Daddy”) has an engineering mind to a fault. If someone asked me what ONE thing I would bring to a deserted island, it would be Mitch so that I could blindly follow his lead as he designs and builds some kind of life raft to float us to safety. No doubt he’d learn how to spear fish with the pocketknife he always has on hand, too. Mitch has been an entrepreneur from childhood, when he and his posse started a turnkey lawncare business, hauling their lawncare equipment all over the Conyngham, PA valley. He has a business sense beyond his years and takes great pride in running arguably the CHOICE demolition and abatement contractor of our local hospitals. His work helps sustain the lifeblood of our community and I proudly work for him, knowing what an honest and loyal employer he is. Mitch is the guy everyone calls when they “need [insert literally any task here] done.” He is organized, methodical and strategic in his life approach, and it shows in the way he runs his business. Mitch leads our family in a similar way, daily following God’s purpose for him.

These two leaders in my life (in a good way) make me question how I am leading those around me? My proudest accomplishments are obviously Regan and Hank, and I think my desire to feel fulfilled beyond motherhood is driven by them. I’ve always felt like I am “good at my job,” but my feelings about work didn’t extend much beyond that. I have been seeking something about which I am truly passionate and can leave even a small mark on people’s hearts and lives. That’s part of the reason I started this blog! It provided gentle way of sharing my life with the world, so I feel compelled to share the latest venture with those of you who have shared the last couple years of my life in this blog!

After Hank was born, I wanted to retake the reigns on my health and fitness (have you already heard this story a million times?). First, I want to pause and say – isn’t the female body amazing? It can literally carry, birth and feed a child all on its own. ANYWAYS, I discovered a program called Faster Way to Fat Loss and essentially the name alone sold me. I won’t get into the details of the program with you, but it changed my life in a way that was about more than just weight loss (though that was a lovely benefit). I found a place as the leader in my family for maintaining our lifelong health. Mitch and I both have a history of exploring health trends, which I think has helped us tremendously in our knowledge of nutrition, but we have finally landed on a regimen that is sustainable and I’m SO proud of both of us that we have maintained our fitness level for over a year. In my lifetime, I have never felt so comfortable and proud of my health. With this discovery, I felt called to share it beyond the scope of my immediate family.  This program limits the number of coaches they will train and open training only once or twice a year. I JUST (literally TODAY) found out I was accepted into their coaching training! I feel an inspiration in this new realm and feel proud that I get to be a leader in this program.

There is a part of me that is still very nervous to pursue this uncharted territory, so I hope my message inspires those of you who, like me, feel unsure of your calling in life. Is this it? I don’t know, but at the very least I feel it’s a PART of something I am truly passionate about: my family’s health and wellness. Thank you to my biggest cheerleaders for inspiring me on a daily basis – BB and Mitch. Love you both so much! I hope I can follow your example.

Does anyone else feel like our world got put in a serious timeout for the past few months? Also like we KEPT getting put in time out for not following the rules? I think I can speak for everyone when I say it is strange times we are living. The impact of the virus on our world has been devastating, but the ripple effects have brought a lot of self-awareness, and that may be a good thing.

What little I know about timeouts is that there is this magical time of effectiveness where the lesson is clearly understood, but also before the message is completely lost. As you can probably guess, timeouts happen in our house with Regan. Some days are better than others, and some days we are frequenting the timeout chair. Sometimes she saves me a trip and puts HERSELF in the timeout chair. What kind of days have you been having since we all got put in time out? Are some days better than others for you, too?

We started potty training the day a stay-at-home order was put in place for us. Potty training quarantine days go together like peanut butter and jelly, but some days it felt like oil and water. It was perfect because we had nowhere else to go and “only” one focus, but some days it felt like we wanted to go running for the hills. When I say “we” I mean Regan and me. We have been our own little teammates through the past several weeks and months, and I know there have been several days where she has wanted to head for the hills and away from me. What I have continued to learn about Regan is that she is capable of much more than I give her credit for – within the first few weeks, she had the potty thing (mostly) on lockdown, pun intended. We had a very successful first quarantine few weeks on other subjects, too. Regan knows her letters by sight and sign, can count to 10(ish) with help, and she’s starting to nail down colors. Her favorite color is yellow, by the way. Yellow is usually her first guess on color identification. But eventually, the novelty of staying at home with mom and Hank started to dwindle.

I am going out on a limb to say Regan and I have reached the end of our joint creativity during this stay-at-home time, and I’m here to tell you that I am OK with that! Regan is a social butterfly and she misses her peer interaction more than words can say. Her teachers at school were emphatic in sharing with me that Regan “plays up” when she is around her typical peers. (THIS, my friends, is why we advocate so fiercely for inclusion in school, but I digress.) They instill a confidence in her that could never come from me alone. One night this week, Mitch had Regan at our neighborhood playground where he watched Regan confidently climb to the big slide and make her own way down after seeing another little girl do the same. Typically, Regan only goes to the smaller slides and will ask for our help at the top. Regan’s school is opening next week, and that little anecdote was exactly what I needed to remind me that sending her back to school is what’s best for her health and growth right now. If you cringed a little at the thought of sending Regan to a classroom full of tiny petri dish preschoolers, just know that the same thought crossed my mind more times than I can count.

As we re-enter whatever new normal this world is going to offer, I can assure you that most of us are constantly weighing the risks and benefits of every action we take. And that is the definition of the life of a mother: constantly weighing the risks and benefits of the actions you take on behalf of your children. Fortunately, Regan’s timeouts have decreased over the past couple weeks (those middle weeks were rough and included a LOT of whining. A LOT.) But the timing of her timeouts must hit that sweet spot. If I wait too long to put her in timeout, she has already forgotten what she’s done. If I put her in timeout and leave her there too long, Hank makes his way over to the timeout chair, they start giggling together, and my message is completely lost. So before we get left in timeout too long, I hope we can all have some time of self-reflection on maybe something we didn’t know about ourselves prior to this timeout. I am more confident than ever that the key to Regan’s success is peer interaction. I know that I am unable provide everything she needs on my own. And most of all, I know I will never take a hug and time with those I love for granted ever again.

Thank y’all for welcoming me back to my little space. So happy to be back!

Well, as y’all have probably heard – we’ve started chapter two on this little family path with the birth of our sweet boy Henry F Vowler on March 4, 2019. It’s funny how it seems like he’s been in our earthly world forever and yet he just arrived three months ago! As anyone who’s travelled the newborn phase will tell you, the first couple months are basically this blur of sleepless nights and sorting out life during the day. Luckily we’ve had plenty of help and we’re now settled into a bit more of a routine. The second baby really is easier, y’all. I realize Regan had some special circumstances that made the newborn phase more challenging but it felt like we jumped right back into it once Hank made his world debut. He’s a big boy (was almost 9lbs at birth), loves to eat, and is full of smiles and coos these days. Regan is the most precious big sister (though she’s had her moments of “testing the waters”). She loves, kisses and hugs on Hank and “helps” Hank with tummy time by not-so-gently rolling him onto his tummy and back again. Having Hank has instilled in me the realization that we now have this huge responsibility of raising a kind, gentle and strong man.

I mentioned in previous posts that the first several months with Regan were tough (for obvious reasons), but one of the toughest parts had nothing to do with her heart condition nor Down syndrome diagnosis. Mitch and I faced our first big marriage challenge after she was born – we each had to learn our roles as parents which is no easy feat. After a baby is born, there is so much focus on the baby and mom that we often forget about the roles of Dad. Mitch and I both struggled with this. I struggled to ask for help and articulate what that help looked like, and Mitch struggled to find his place in this new parenting role. He threw himself into work, a place he found success and he felt he was most effectively supporting his family. This left me feeling alone, and yet I still struggled to communicate that to the person I love the most. Mitch’s and my relationship is a true partnership and we both felt abandoned by the other. [I had started working with Mitch before Regan was born and because she arrived 4 weeks early, he had a mountain of work left undone by me.] We each ran to our corners of comfort (my role as mother, his role as provider), and our relationship suffered because of it. Once we were able to see through the fog, we reflected on this time and vowed not to make the same mistakes again. There is a pearl of wisdom I learned from the priest who married us – avoid holding onto “unexpressed expectations.” In that time of suffering we each held onto unexpressed expectations.

Our relationship has grown in the two years since then, and I wish words could capture the relationship Mitch has with our babies. He is hands-down Regan’s favorite person right now, and she’s an endless flow of chatter when he gets home from work. When I get her from her room in the morning, she typically refuses to come to me and signs “Daddy” when I try to pick her up. If Mitch runs upstairs, she’ll wait at the bottom behind the baby gate and yell “DAAAAAAAAAAA” until he comes back. Mitch is my support system when Hank has a rough night (though he has this magical power to sleep through all baby cries – HOW??). It’s not unusual for him to work 10-12-hour days and yet he happily comes home and does the evening/nighttime routine with me without complaint.

Those new days as a Daddy can be tough, but there’s no one who’s a better Daddy to our babies than him. He’s strong and gentle and he’s raising a little girl to be a strong Texas woman and PA proud. He has a little boy who’s learning to grow a thick skin (Regan can be a rough friend sometimes), and who will undoubtedly love with his whole heart the way his daddy does. He’s my partner in life, and he deserves all the praises this Father’s Day.

There’s another man who taught me the role of a Daddy and taught me the things to expect from the father of my children. Those of you who know my dad know him is a gentle soul, full of love for his family and if you listen closely enough, you’ll catch his quippy humor that’ll have you in stitches. What you may not know is that he serves as the priest of our family, leading as the best example of God’s love and mercy. His faith guides every decision from his choice of words (he NEVER cusses) to his compassionate treatment of others. My dad wasn’t the best with discipline (sorry, Daddy). He was notorious for coming in to correct our behavior and immediately develop a smirk and we would all end up in a fit of giggles. He always said the only thing worse than a mad kid is a happy kid (that’s usually when we caused the most damage). Thank you for laughing with us when we were the worst. I have him to thank for being my guiding light – he’s the truest example of a father’s unconditional love. Thank you, Papi. We all love you so much!

Happy Father’s Day to all the Daddies, no matter which stage of Daddy you’re in. Know that your love is always felt by your babies. We love y’all!  

As I write this (a day before it “goes to press”), I’m recalling the events that transpired exactly two years ago in this moment. I had contractions all day, and due only to the persistence and insistence of my mom and sister, Mitch and I headed down to CHOP (a two hour drive for us) around 11PM. I’ll spare you all the details, but in a matter of less than two hours of arrival to the hospital, we had Regan in our arms. And our lives were forever changed.

The first few months were rough – probably the most difficult experience of my life to date. There were times I struggled as a mom, times Mitch and I struggled in our marriage, and nights of struggling to wake up for the dreaded feeding tube schedule. And then there was open heart surgery – something I never wish to relive, and yet something for which I’m eternally grateful. And then it was as if our angel got a second chance at life. The change was almost immediate, and within a week of open-heart surgery, she was off all heart failure medication and only on Tylenol for pain management. (Think about that for a minute – within seven days of open-heart surgery, she was only on Tylenol for pain!) Surviving heart failure through the winter months and coming home within a week of surgery was just the first time Regan shocked us with her strength and resilience.

Regan is incredibly strong, albeit not always in the traditional sense. In the last year, she’s gone from just learning how to sit independently to aaaaaalmost walking. She’s eating like a champ, she still loves her bottle, she’s up to somewhere pushing FORTY signs, and uses signs to communicate regularly. She says “hi” and “bye bye bye bye”, is trying to say “book” and making a lot of new and fun sounds (all great indicators of verbal communication). For a girl with low muscle tone, she’s making big strides, literally and figuratively! Two years ago today, I was quietly wondering what life with Down syndrome would mean. I had no idea the joy that awaited me on December 5, 2016.

It’s true that when you have a child, your heart grows this new space that can only be filled by the happiness, joy and peace of this brand-new person. When you have a child with special needs, you’re keenly aware that the happiness and peace is a precious gift and not to be taken lightly. It’s this unique kind of joy that only comes in the form of a divine gift, and it’s a gift that we’re granted for but a spec of time in the scheme of eternity. It’s up to us to maximize our time with the angels in our lives.

So to my precious Regan – thank you for sharing another year with us! I’ll be the first to say this year was a little easier than the previous, so thank you for that, too! Today and every day, thank you for the gift of patience, compassion, and laughter like I’ve never known. You surprise me constantly with your strength, persistence, stubbornness, and awesome sense of humor. You’ve developed the perfect courtesy laugh (thank you for that; you’re a great audience), and you’re already so much funnier than you realize. You have a softness to yourself and you’re cautious even with your own movements. You’re the perfect travel companion. You rarely complain and you’re an ever-present reminder for me to maintain my own patience with others. You bring out the best in those around you, even perfect strangers. You give those who meet you a chance to share their hearts. I’ve been the humble recipient of many stories of struggle and love and of those who know the journey of a loved one with special needs, and it’s all because they see your beautiful face and feel compelled to share.

You’re an angel, a gift from above, and one that most days I feel unworthy to receive. I never would’ve guessed how much you’d shape my life, and how much you make me want to be a better person. In a lifetime I’ll never be able to teach you as much as you’ve taught me in your two years, but as your mom it’s my job to try. Happy Birthday, my sweet angel. Cheers to many many more!

Isn’t it interesting how such different personalities can all come from the same bloodline? You’d think we’d follow the paths of those with whom we share our DNA, but that’s not typically the case. We each have distinct personalities, different interests, and unique paths in life. I was anxious in the beginning of this pregnancy, and each day brings a little more ease to those fears. We had our 20-week ultrasound a couple weeks ago. We went to the same office where we received Regan’s prenatal diagnosis (an experience that was less than ideal), so it brought back a lot of memories to walk through those halls again. I’m happy and we are pleased to share that this baby is kicking like crazy and shows all signs of being a typical baby. The most emotional moment came for me when the sonographer zoomed in on this precious heart. I’ve been to a lot of ultrasounds, seen plenty of echocardiograms, and feel confident that I could identify an AV Canal Defect on an ultrasound.  With that said, as soon I saw this baby’s little heart, I clearly saw four tiny but distinct chambers, and two correctly-functioning valves (Regan had a big hole right in the middle of her heart that created one common valve instead of two divided valves, so her non-oxygenated and oxygenated blood got all mixed up). This may have been the biggest relief to me in this pregnancy. Regan wouldn’t be who she is without Down syndrome, and I wouldn’t trade that for the world, but I could certainly have lived a life without witnessing heart failure in my baby. So here we are, over halfway to meeting our next little personality and I can’t help but wonder what kind of person this baby will be. Regan’s heart gave us the gift of compassion and patience, what will new baby bring?

I started this blog three weeks ago (WHERE does the time go), and the above was the intent of the message of the blog, but now I also want to share some moments of honesty that happened this week. Being a parent to a child with special needs comes with some occasional additional “attention” (I use quotes because I think EVERY parent experiences this, and I honestly have no comparison as I’m not yet a “typical” mom!). I’ve mentioned before that Regan has more appointments and check-ups than a typical child her age, since Down syndrome runs a higher likelihood of a LOT of random things (that 21^st chromosome contains a lot of important genetic information!). SO, where a typical baby sees a pediatrician at regularly scheduled intervals to monitor health, a child with Down syndrome sees a pediatrician and (depending on symptoms and testing) various specialists including ophthalmology (to monitor eyesight), endocrinology (monitors blood counts and thyroid), ENT (all things ears, nose, throat, hearing, etc), cardiology (we’re down to annual visits!), orthopedics (those loose joints can cause some issues), and all types of therapies – physical (gross motor skills), occupational (fine motor skills), speech and feeding (self-explanatory). To put it mildly, it can be EXHAUSTING. I find myself answering what feels like hundreds of questions related to Regan’s development – everything from “is she using utensils to feed herself?” (no) to “can she put on a hat” (umm..yes? does putting a bucket on her head count as a hat?). It’s like a highly emotional job interview where I’m advocating for the most precious gift in my life. I have a goal to be as objective as possible, not overselling her abilities but making myself clear on the milestones she has accomplished.

I had one such meeting yesterday, and as I pulled out of the parking lot I broke down into tears. I can’t pinpoint exactly why, but I can tell you after two long days of appointments as described above I was emotionally spent. The pride I have for Regan just exited my body in the form of tears once I had no words left to share. I hope by sharing this, other parents and others who have gone through similar circumstances can understand that we all go through experiences where we want to shout our pride from the rooftops. It can feel like Regan’s worth is diminished to a question and answer session after which they explain to me where she falls on a typical developmental growth chart. She’ll most likely always be behind on these charts, but my heart knows her worth exceeds a chart that says she’s measuring 12-18 months developmentally. In our lives, she’s surpassed any preconceived notion I had about Down syndrome. Her job isn’t to “prove” the tasks she’s able to do, and that’s not any of our jobs either. Our job is to LOVE LOVE LOVE, and I don’t know anyone who’s done a finer job at that task than our Regan.