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One year ago today, my life was flipped upside-down, inside-out. The weather was almost exactly as it is today – partly cloudy, the warmth of the sun and summer air stretching through our quiet neighborhood as I walked Walter with a growing baby bump (though no baby bump today!). I was on cloud 9, thinking how happy I was that I started working with Mitch, grateful not to have a long commute and able to rest as I needed when the woes of the first trimester struck. I answered my phone on this walk to hear my doctor tell me that the pre-natal bloodwork I had done came back with a high (91%) likelihood of Down syndrome.

When you hear that you will have a child with special needs, there are a thousand thoughts that cross your mind. Some of those thoughts I’m apprehensive to admit in black and white, but in an effort to maintain vulnerable honesty, I’ll share them with you here.

I thought I would have a huge burden for the rest of my life. I thought I’d forever have a child living at home and how awful that might be. I thought I will never have alone time with my husband again. I thought I’ll never be able to travel without children again. I thought I’d have a child that others won’t know how to love. I thought I’d have a child incapable of learning effectively. I thought I’d have a child with a multitude of disabilities, learning, emotional and physical. I felt sorry for myself. I wondered what it would be like if I had gotten pregnant at a different time. I wondered if we had waited a little longer, maybe this wouldn’t have happened. I thought if maybe I hadn’t been drinking in Italy this wouldn’t have happened. I wondered if something I did altered the course of events and would now forever affect my child’s life. I wanted to wish Down syndrome away, to take this burden off my child and me. I thought my child will never have a normal life, and I thought I would never have a normal life. I thought about how this child would affect my other children. I wondered if all my children would have Down syndrome. When they told me about the heart condition, I wondered if my child would survive. When they told me about the surgery, I wondered if I would survive. I wondered if my child would ever have friends. I wondered if my child would ever have significant life experiences, like going to sleepovers, school dances, graduating high school, college, or marriage. I wondered if I was capable and worthy of this child. I wondered if I was strong enough to care for a Down syndrome baby, and to have the same unconditional love that I would for any other child. I prayed for grace and strength and courage and so many other character traits that I felt I was completely lacking as I crumbled under the grief I felt.

I cried countless tears that day and in the days that followed, and I still cry tears today. They’re different now, though. I cry for the woman I was that day. I mourn her loss, in a way. And I celebrate her victory. I said goodbye to a life I thought I’d have that day, and today I embrace with joy the one I have. I’m sorry to Regan for the fear I had when the abyss of the unknown seemed to stretch out in front of me like a tunnel with no light. The fear I felt was debilitating, and I wondered when I would feel happy again. But as the world kept turning, so did the days, and my happiness returned through the kindness of our family and friends and their immense love and support through some of the hardest days of my life.

Here’s what I know now – my child has brought me more joy than I could’ve ever imagined. She hasn’t just brought me joy, she has spread her love and joy coast to coast across this country. She has brought me more blessings than I could capture in a blog post, and I don’t suppose they’re about to end any time soon. She’s completely capable of learning and has exceeded our expectations beyond measure. She’s survived and thrived after open heart surgery and her impact on those around her is profound. Our lives are as “normal” as you could imagine, whatever your definition of normal might be. I can’t say for sure whether our other kids will have Down syndrome, but if that’s our path, then we will continue along this journey with open hearts. Things are a lot less scary for us, and if there was a way for me to thank all the special needs parents that came before us, I would give them a big hug and endless thank yous. They’ve truly paved the way for us and for Regan’s future.

For my precious Regan – I love you to the ends of the earth. I promise to be your biggest cheerleader, your forever advocate and a fighter when you need me. More importantly, I promise to teach you to be your own biggest advocate. I promise to face things with you, to chase your dreams by your side and be the wind at your back when you need a push. Thank you for teaching me to be unafraid, to take things as they come, and know that the grace of God is a real, tangible thing. Thank you for giving me a whole new definition of love.

Love and hugs and kisses to all my readers! Have a wonderful, happy 4^th of July.

There’s a budding romance in this house and it’s between one four-legged furry creature and one tiny two-legged human. When we first brought Regan home, I was only a little concerned about Walter. [If you’re new here, Walter is our two-year-old yellow lab mix who has the attention span of a gnat and the stamina of the Energizer bunny.] Walter has never showed any signs of aggression so I wasn’t worried about that, but he’s blissfully oblivious to his strength and has literally knocked me over to the point where my kneecap dislocated (that’s another story for another day). So the one thing I was am worried about is his lack of awareness of his proximity to Regan when he’s near her.

In the beginning, Walter was somewhat indifferent to Regan. To him, she was just another “thing” in the room. Pretty soon, though, he started to realize that she gets a lot of attention. I started to find his toys sitting on her lap in her swing, he started to take her baby toys and bring them to us to play with him, and he started to lay on her playmat, knowing that’s where we spend our time with Regan on the floor. The first time I put Regan on her playmat with Walter nearby was a disaster. He got overly excited and pawed at her (probably hoping she was a toy that he could rough-house with). Needless to say, that ended in tears and me feeling a little bit of mom-guilt –woops!

Now Regan and Walter happily play together on her mat (he invades her space more than she does his), but admittedly I still get nervous because he tends to hover over her and I see those little claws so close to her skin! She is REALLY starting to pay attention to him and looks around for him in the room when he leaves. When they’re on the play mat together she tries her hardest to crawl / scoot / roll to him. Even our Early Intervention teacher said he will become very useful for us in the coming months. We can see the love between Walter and Regan growing and I think there’s something to be said for that.

We could all take a page out of Walter’s book – excitement every time he sees anyone he loves (well, let’s be honest, anyone at all for that matter). He loves so unconditionally and I need to be reminded of that kind of love every now and then. Why is it that we tend to lash out the most at those closest to us? There have been a couple times I’ve been hard on Mitch –too hard –and one day this week was one of those times. In my defense, we haven’t had sugar in almost 30 days so there are times we are both on edge. But this time, it was my fault. Being a parent is hard enough on its own, and there’s no need for me to add stress to that! If there is one thing I’ve learned about being a wife and mom, it’s that I’m never done learning. Seeing Walter’s blossoming love for Regan reminds me to have patience and love for everyone in my life. Thank you for this small reminder, little Bubby!

 

After I got married, I had a hard time parting with my maiden name. I don’t think anyone prepares ladies for exchanging a part of their identity for a brand-new name; it’s such a strange sensation to realize you won’t be addressed by this name that you’ve carried with you all your life. I also LOVE my maiden name. My family took on the identity of the “Bears”, a shortened version of our last name and my mom’s pet name for my dad. I can’t think of anyone with a more appropriate nickname and I’m so glad he shares it with our whole family.

You see, my dad is strong but kind, never one to thrive on confrontation. As kids, my dad would say “the only thing worse than a mad kid is a happy kid,” because that’s when my siblings and I would get into the most “trouble.” There is one memory that stands out to me that’s the perfect representation of this: my sister and I shared a room, and my brother came into our room to play “basketball.” We used a small rubber ball and the “basket” was just above the door frame leading into the bathroom. We were jumping on and off the beds, running around the room shooting hoops, when someone (pretty sure it was Dan, but I’m no snitch) attempted a shot that shattered the light bulb in the overhead fan/light fixture. We all froze in place instantly, unsure what our next move should be. I’m sure the deafening silence made its way into our parents’ room next door because my dad was soon standing in the doorway scanning the room for damage. He took one look at the light fixture and then at our faces, probably hoping for some sense of shame or remorse. We must’ve been hopped up on sugar and fun because I remember trying to hold in my laughter (a serious case of the church laughs, you know when you’re trying SO hard not to laugh that the situation becomes even funnier). Well, the hilarity spread to my dad because he got a smirk on his face that he could not kick. We ALL erupted in a fit of giggles and we could see that my dad was mad at himself for giving into us. I’m sure we were punished somehow, but that part of my memory is overshadowed by all the laughter that ensued.

Both my mom and dad have become our friends as adults, typically the first we call for advice, a shoulder to cry on, and our supports in faith. My dad became Catholic as a young adult, and his faith is among the strongest I’ve witnessed. He serves as the priest of our family, and leads us in his daily devotion to his faith. Faith doesn’t always require a loud presence to lead by example; my dad is a quiet-natured person, not to be mistaken for meekness.

His humor follows suit – often his remarks are softly muttered, requiring some focus and attentive listening to really catch the funny. The tell-tale sign is that little smirk on his face; the same one he gave us when we were being “happy kids.”

To my Daddy (something I’ll never stop saying no matter how old I get) and our Papi – thank you for giving us many laughs, your leadership in faith, and an ever-attentive presence in our family. We love you SO much! Happy Father’s Day!

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Of course, this post is also dedicated to the other Daddy in my life, Mitch! Over the past six months, I have had a first-row seat to witnessing the man in my life grow into fatherhood. It’s not an easy journey, that’s for sure, but he has been eager to learn and his love for Regan is evident every day when he gets home from work. He scoops her up and holds her up against his chest, and she babbles on, telling her Daddy about her adventures that day. They both light up with smiles like I’ve never seen.

I’ll never forget Mitch’s reaction when we found out about Regan’s diagnosis. It was almost like he thought ‘Down syndrome? No big deal.’ His emotional breakdown came after her heart condition was discovered and we knew she would need surgery within her first six months. He had all the confidence in the world we could handle any learning and cognitive disability, but the heart condition was something that would be beyond our control. I am so grateful he could be strong and share my faith that we would take each step together, and lean on each other and our faith to get through.

To Mitch – thank you for being patient with me as we both navigate our newest roles as parents. Thank you for understanding (or at least pretending to understand) when I’m exhausted at 8PM every day. Thank you for your daily affirmations of love and appreciation. Thank you for having more room in your heart to love our precious girl, and thank you for your strength when I am weak.

Happy Father’s Day to Mitch, Daddy/Papi and all the daddies. Our world would be incomplete without y’all.

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I’ve joked with my sister and mom several times that after the emotional roller coaster of the past year, our tears are just under the surface. Not necessarily in a way that says we are sad, but more typically in a way that things touch us in a heartfelt, emotional way. After everything that’s happened I’m just inches away from being taken back to that fragile state. We have a pump of hand sanitizer at Regan’s changing table that we “got” from CHOP before we left, and every single time I use it, I’m transported back to the NICU where an uncertain future lay ahead. In so many ways, I hope that feeling never leaves me because it allows me to have a much greater appreciation for every simple, special moment we share with Regan.

Regan is now SIX MONTHS (how?!?!), and is doing so wonderfully. We have an Early Intervention therapist-teacher come to our house once a week to help me work with Regan in specific ways to reach her milestones. She’s already blown it out of the water by rolling over right on track, and every time the teacher comes to our house she says she is amazed at how long Regan will work with us.

She’s weighing in at 13lb 8oz and 24” tall. She is eating like a champ on a schedule that’s somewhat predictable. I think she is teething, but no visible chompers yet. We’ve started her on some baby food which she tolerates but can’t say she loves it yet. She’s certainly strong-willed and if she’s not interested in doing something, there’s no convincing her. She loves walks and rides in her carseat/stroller, and we are working on her ability to sit up on her own. She babbles constantly and I can’t wait to find out what she’s saying. In the mornings and evenings, we can hear her in her crib just chatting away, probably telling her animal friends about her day.

Happy 6 Months, Regan! We are SO proud of you and love you more than you can imagine.

 

If you’re a follower of my social media pages, it comes as no surprise to you that my family has started another round of Whole 30. If you’re not familiar, it’s a 30-day diet that emphasizes whole foods and during which participants eliminate sugar, alcohol, grains, legumes, soy, and dairy from their diets. It’s certainly a challenge and certainly worth the effort, but it’s a tough 30 days. The beginning of the book contains a little bit of tough love in stating something like “This is not hard. Don’t you dare say this is hard. Losing a parent is hard. Surviving cancer is hard. Drinking your coffee black is NOT. HARD.” That’s not a direct quote and I’m not sure the examples I gave are exactly the ones they reference, but you get the point. The purpose of Whole 30 is to eliminate your body of inflammatory substances, toxins, and potential allergenics to allow the participant to determine whether his or her body has an adverse reaction to such foods. It’s a cleanse in the most natural and purest sense, and like I said, it’s tough.

My family has done a successful round of Whole 30 previously and through it I learned that Whole 30 is a mentality more than a diet. It’s a complete commitment (borderline obsession) to nourishing your body with what it needs more than what your mind desires. There’s a bigger point here, I promise.

I think there’s something to this mentality. Getting back to what we need and figuring out what defines something that’s “hard” in your life. It’s all about perspective, right? The writers of Whole 30 dish out tough love in saying Whole 30 “IS NOT HARD.” There could be an argument made there (I would DEFINITELY describe Whole 30 as a challenge), but it made me start to think how spot on they were in saying eating habits are not hard. So then – what IS hard?

My family has gone through some tough times through the years (haven’t we all?), but I continue to be amazed at my mom and dad’s resilience through it all. If I’m grateful for anything they’ve taught me, it’s this. To make a very long story short, my dad (we call him Papi) took a fall that ended their Camino earlier than anticipated. [If you don’t already know, my sister (BB) and Papi went on a pilgrimage that took them from the south of France across Spain; it’s called Camino de Santiago.] He is doing much better and praise God is back home resting and recovering. If you know my family, then you know this is not the first fall we’ve had (neither literally nor figuratively). It would be easy to feel like – sheesh, really?! I wondered if as Papi was falling he had the thought ‘ugh, not again.’ That’s certainly not to say we don’t have moments like that, but my mom and dad have never dwelled on the falls we’ve taken. For all the things that have been “hard”, we’ve had a thousand as many blessings. Papi’s fall was hard (again figuratively and literally), but we’ve said repeatedly how many things went right despite all the things that went wrong.

He was there with BB who not only speaks Spanish, but speaks some medical Spanish, not to mention is a medical professional – I’ve told her she has served as a one-woman missionary for our family. He fell in one of the larger towns where there was a clinic and able to at least get an initial assessment to determine yes, it was bad enough that they needed to return home. It happened in Spain and not France (where basically everything they say sounds to me like the teacher from Charlie Brown). BB was able to keep Papi in enough health that they made it home to Houston where there is an abundance of excellent healthcare at our fingertips. The fall happened to Papi who has the mental toughness and pain tolerance of a super hero. In case you’re curious, he endured multiple rib fractures, transverse processes fractures (the little wings on your vertebrae – don’t feel bad, I had to google the name of it just now), and a punctured blood vessel had caused his lungs to fill with blood. In the midst of all that, he travelled across the world and walked into the ER on his own. Every single doctor who saw him called him a walking miracle, and they weren’t just being nice. His will, patience and compassion through it will is truly awe-inspiring.

No one could have guessed BB and Papi would endure such a shocking end to their Camino, yet neither one of them has the attitude that their journey was cut short. It would be easy to feel gypped ( <-thought that word was spelled ‘jipped’ until just now) out of an experience, but they’ve both continued on their life Caminos with the sunniest disposition. To them (and to me), it’s yet another reminder how abundantly blessed we are and how incredibly fragile life is. It is truly something to be treasured.

We continue through the “hard” times and remember all the good we have.

Regan just had her SIX MONTH appointment (what?!), and all is well! She is 24″ and 13 lb 7 oz. She is rolling over like a little doodle bug, following along perfectly on her growth curve, and we’ve started her on some solids. I told the doctor today and I’ll share with y’all – I couldn’t have hoped for anything better. One of the common misconceptions about Down syndrome kids is that they’re always happy – I gotta tell y’all, Regan is doing nothing to shatter that stereotype. She is incredibly content and is rarely very fussy, and yes, I know how lucky I am. I never could’ve guessed how much joy she would bring us in her little six months of life.

Happy Summer, y’all!

Things have been a little hectic in the Baringer/Vowler world as of late. An unexpected extended stay in Houston and a late night solo flight home to PA left all of us dragging a bit this week. So for now, y’all will have to settle for a pictures-only post until I have the energy to give a full blown update. (Aren’t the pictures better anyways??)

The quick update is a (once again) THANK YOU to all of our family, friends and framily who love our girl beyond what I could’ve ever expected. There were many many happy tears shed over the past few weeks. Tears of appreciation and tears of thanksgiving for BRV’s joy, health and happiness. Thank you thank you thank you. One of the biggest fears as a Ds mom is that people won’t know how to love your child. While I know there will be struggles for us in the future, y’all have shown us that there is a lot of love in this world and we are immensely blessed to have framilies who share that love with us.

For now – enjoy the pictures!