Welcome

Phew – I think we can all agree this has been a crazy week on a national level. I can totally identify with the presidential candidates, though. When I was in eighth grade I ran for Student Council president. In an effort to appeal to my younger constituents, I started my speech before the entire school with a rap. It went like this –

My name’s Megan Baringer – my friends call me B – I’ll be the best president you see – I’m the only way that your voice will be heard – so circle Megan B on your ballot – WORD.

If you recall from my previous post, I went to Catholic school, so you can imagine the crickets that followed that intro. I also ran on a platform of adding microwaves to the school cafeteria, allowing students to eat during class, and extended breaks between classes to allow for more locker time. I was 90% sure I wouldn’t be able to accomplish any of the above, but I sure knew how to sway the popular vote. Well I guess I wasn’t SO successful because I lost by six votes. It sent shockwaves through the school similar to those following Trump’s success over Hillary (I, too, lost to a boy – holla atcha girl, Hillary). I guess the student body just wasn’t ready for a woman in power. Luckily, the Student Council graciously allowed the officer who lost by the fewest votes to be named “Ambassador”. Quite the consolation prize if you ask me!

Anyways, I’m not much for political commentary, but I think we can also all agree that what we need now most is faith. It’s probably a difficult time for a lot of people to have faith, but the least we can do is send our thoughts and prayers to those in power that they continue to represent a country of inclusion and freedom.

Now that the election is behind us, let’s look forward to all the wonderful holidays, happiness and new year ahead! Every day we have the chance to make small changes and small acts of kindness in our everyday lives that can change the world around us. I’ve personally been touched by people’s kind words and actions and I can tell you that those small actions can completely change perspectives. So instead of focusing on what hasn’t gone right or what may change, I’m making it my objective to focus on the impact I can have on my small world and spreading positivity and hope as much as I can.

With every new day, we are closer to meeting our little one! The reality is starting to sink in as we continue to make preparations for our newest family member. I sat today for our first Non-Stress Test, where they hook me (and Baby) up to a heart rate monitor to see how much Baby is moving and how his/her heart reacts to those movements. Depending on the activity of Baby, they can last anywhere from 15-20 minutes to over an hour. Luckily, Baby got the message that we were being tested today and was very cooperative! Lots of movement and associated heart rate response. We will have to sit for these tests twice a week, every week until Baby makes his or her arrival. (If you listen closely to the clip below, you can hear baby’s heartbeat!)

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Stay tuned for CHOP update next week after we get a tour of the Special Delivery Unit.

On a related note, Happy Veterans Day to those who TRULY make this country what it is. Thank you for all your service, sacrifice and support. Y’all are the unsung heroes of this nation, and the media should be covering more of your stories and less political nonsense.

In my first year of architecture school at A&M, one of my very first assignments was to sketch my favorite piece of architecture. I was in a class full of first year students and had greatly overestimated my skills as an artist. The one and only time I was featured in class for an “honorable mention” was when I presented my sketch for the assignment, which was my house. (I should note that I was featured under the “needs improvement” presentation several times after that – sorry, Mom). Some of my favorite childhood memories are the parties my parents had throughout our 20-ish years in that house, and I couldn’t imagine any other piece of architecture to choose that had more sentimental meaning. My dad built the house for our little family when I was just a baby and I loved every inch of it. When I was in middle school, my mom let me paint the border to my room freehand which I thought was so cool – every 13-year-old girl’s dream. Miranda Lambert’s song “The House That Built Me” describes my feelings to a T. As we all get ready for the baby shower this weekend at my house in Pennsylvania, I hope that my kids feel about their house(s) the same as I feel about mine. There’s nothing that creates that feeling more than throwing a party with so many loved ones coming to celebrate Baby V!

Trying to describe my emotional attachment to my home is akin to trying to describe the emotional journey we’ve had to date with Down syndrome. Unless you walk through the threshold yourself, I couldn’t expect you to know the emotional roller coaster it takes you on. In the packets of information we got from the Maternal Fetal clinic after our first appointment, I found a poem that is well known among the Down syndrome and special needs community. It’s the most accurate portrayal of this path that we never expected to travel, and because of this poem, my dad affectionately calls the baby, Baby Holland.

“A Trip to Holland”, by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans… the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. 

You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. 

So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

 

Happy Weekend, all! And welcome to our journey to Holland…

I remember having a conversation with my grandma (we call her Mah) many years ago, probably on one of the many afternoons I walked to her house to wait for mom to pick me up after school and hustle me off to swim practice. I didn’t know to cherish those times when I was just an awkward middle schooler in the worst plaid Catholic school uniform you can imagine (for the record, anyone who thinks Catholic school uniforms are sexy has never actually seen a real Catholic school uniform).

Now reflecting back, I struggle to remember her exact words on what were just simple chats between the two of us. It was rare for me to get alone time with her – I mentioned in a previous post that I am one of over thirty grandchildren and she loved us each in a unique way. Mah’s house was almost always abuzz with kids coming and going in between her working on projects for our little parochial school, making cookies for the inmates, baking casseroles for dinners, sewing the latest baby blanket for the next grandchild to be born, you get the idea. Anyways, for some reason this one conversation has stuck with me and I never knew why until now. I remember talking to her about our family, and I told her it was honestly amazing that our family didn’t have any major health ailments – no cancer, no history of high blood pressure or diabetes or any of the typically inherited issues, heck we didn’t even have a pair of twins to mention! I wish I could remember her exact response, but I imagine it was something like “oh darlin’, we are so blessed” and then she probably continued on with her task, humming along as she stuffed poppers for the next church bazaar or prepping meatloaf for the dinner. It was a simple response but she never took for granted her life’s and our family’s many blessings, and she meant what she said.

In the homily this week, the priest referred to his grandmother as his “faith mentor”, and I thought that is such a great way to describe my reflections on my memories with Mah. She was deeply faithful, but not blindly so. Her faith was formed and evident in her relationships, and was proven to me in physical form at her funeral, where the church was filled beyond capacity with those whose lives she touched. I wonder a lot what she would tell me as we approach our journey with Down syndrome, but maybe I don’t have to wonder. I’ve seen faith start to come to life in the relationships that have been already strengthened, deepened and formed in just the first few steps of this lifelong path. And since Mah was ALWAYS a proponent of Catholic education, I know she’d join me in a faith journey based on education and learning everything there is to know about Down syndrome.

At our only meeting with the genetic counselor, she jumped straight into statistics, our test results, next steps for us – it was a whirlwind of a day already, but (in my opinion) there wasn’t enough focus on the many possibilities in life our child will have. I’ll admit that prior to the past few months, my limited education on Down syndrome dated back to middle and high school biology, and I’m very much a study-to-the-test kind of person so there wasn’t even much absorbed there. Since that first meeting, I’ve spent countless hours reading about Down syndrome – everything from other parents’ stories to the latest findings for possible preventive measures and rhetoric on the morality of such ideas. In the spirit of Down syndrome Awareness Month, and to share a little bit of the education I’ve gotten, I thought I’d share a few facts I’ve come across that were either surprising or interesting to me…

• The chromosomal condition is technically called “Down syndrome” (as opposed to Down’s syndrome). The doctor John Langdon Down is considered to be the “father” of the syndrome after publishing a paper most accurately identifying it as a unique condition. [As an aside, I read on a mommy-forum recently that this common misnomer really bothers some people. It doesn’t bother me at all – just thought it was interesting since I, too, always thought it was the possessive form prior to our experience!]
• The actual cause of Down syndrome is still unknown. (This one is the most mind-blowing to me!) Down syndrome occurs at time of conception when a pair of chromosomes in the 21^st chromosome in either the sperm or the egg fails to separate. The third copy of the 21^st chromosome is then replicated throughout the body as cell division occurs. (read more here)
• Although Down syndrome is a genetic condition, it is very rarely inherited (only about 1% of cases). It is a chance occurrence, as mentioned above, at time of conception.
• Although the likelihood of having a child with Down syndrome increases with maternal age, most Ds children (around 80%) are born to mothers under the age of 35.
• There isn’t really a “spectrum” of cognitive ability with Down syndrome (some people compare it to the Autism spectrum, which isn’t accurate). Some have asked me if there is any way to know where our child will fall on the Down syndrome “spectrum”. While I wish there was a way to look into a crystal ball and tell our future, that would be similar to me asking my pregnant friends or friends with babies how smart they are (the babies, not my friends). There really isn’t any way of knowing where our babe will excel or struggle, no differently than a typical baby! [Another aside – a great way of referring to a typical 46-chromosome baby or person is just that – “typical”. It’s a preferred term over “normal”, since we’re definitely all at least a little bit crazy 😉 ]

On a final note, I am open to any questions! This is a learning experience for everyone, and y’all are this babe’s little village, so ask away. Full disclosure – I may use a Baringer fact* on you if you catch me in a pinch.

I also want to reiterate my sincere gratitude for the continued words of encouragement and love from everyone around us. I truly cannot say thank you enough. Every single note, comment, text touches my heart in a way you may never know. Your strength is my strength.

Happy Weekend!

*Baringer fact: (noun) 1. A statement made convincingly enough that it is understood to be factual, 2. Datum or fact referenced that may or may not be accurate

Well folks, there’s no doubt that the fall weather is here in PA. The average highs are starting to drop into the 50s and low 60s. Today is gray and rainy – the kind of weather that makes you want to snuggle under a blanket on the couch and watch SportsCenter (no? just me?) with your cup of coffee. The Texans and my fantasy football team are both having dismal seasons with a desperate need for a turnaround, but the Aggies pulled a big Win after a nail biter on Saturday against Tennessee. I may have lost a few friends while watching the game this weekend since they’ve now seen that I am a highly emotional fan and they probably now have serious concerns about my mental health. Mitch was the only one who had the courage to actually say out loud that I should probably calm down since I have a little life depending on me (I’m sure everyone else was thinking it too, but semi-afraid to approach me during double OT). Not to worry, baby let me know during the whole game that he/she is ok, giving me kicks and punches and I’m sure a few Gig ‘Ems thrown in there. I was really hoping that baby would help me to realize that football is just football and when the Ags play on Saturday, it’s just another day in the week, but no such luck so far. My emotions are still tied to that win or loss on the scoreboard and my anxiety sky rockets again by the time next weekend’s game rolls around. Such is the life of an Aggie fan – let me tell you, friends, it’s rough. Although football (unfortunately) doesn’t fall on this list, Baby has already taught me so much about this sweet life of ours.

Love and Acceptance – My biggest prayer for our babe is of course for health and successful surgery, but a very close second on that list is love and acceptance. I hope that friends, acquaintances, even passersby will treat our child (who will someday be an adult) with acceptance, patience and kindness. In turn, this has made me reevaluate how I treat others, disability or not. I’m ashamed to admit that I don’t always know how to act around those with special needs. I have this underlying discomfort (fear) that I’ll be too nice or overly accommodating and therefore be acting differently than I would in any other situation or with a typical person. How sad for me! That I’m normally not that nice to people I come in contact with in my daily interactions. This has been a huge eye opener for me. Here I am – moving through life without thinking too much or challenging myself – and one of the few times I stop to think about how I’m treating others is when I come across someone who’s different than me. What a blessing they’ve given me, since I’m now forced to look inward at how I treat not only them, but everyone.

Let me give you an example – there’s a checker at our local grocery store who has Down syndrome. Previously, I paid no attention to which aisle I chose other than selecting the shortest one. More times than not, I’ll opt for the self-check line to avoid human interaction altogether. (I am really making myself sound like a winner in this post, huh?) After noticing on a recent visit that one particular aisle had a checker with Down syndrome, I walked directly to her conveyor belt to start unloading. Selfishly, I now seek interaction and observation of adults with special needs. It gives me hope in realizing that these adults can and do have fully enriched lives, are contributing members to our economy, and sustain social relationships no differently than you or I. I also feel like I’m now part of a secret “club” and this poor lady was probably wondering why I was awkwardly smiling at her while she dutifully rang all of my groceries. I’d love to say I struck up a meaningful conversation, but there wasn’t much more to discuss past the usual “paper or plastic?” (because Lord knows I left my reusable bags at home… AGAIN). Despite our quick exchange, I left feeling stupidly proud of myself that I’d lost the fear of such an interaction. In reality, I should have thanked her (and Baby V) for giving me this gift – to realize that I should be treating everyone with love, acceptance, and kindness – even if it is just a brief smile on your grocery store run.

Appreciation for the little things – About an hour before every doctor appointment, the “pre-game” nerves start to kick in for me. Every month, we see three different doctors – my OB/GYN who continues to monitor my health, the Maternal Fetal Medicine doctor who monitors all things Down syndrome, and the Cardiologist who monitors baby’s heart. With every visit, there’s of course a chance that any one of the above doctors discovers a(nother) health complication for either me or the baby. I can’t say for sure, but I don’t think that I would have appreciated my health and baby’s health as much if I’d had a typical pregnancy. I remember calling my dad after our first maternal fetal appointment (the first we had after the test results/diagnosis) to tell him that they didn’t identify any additional markers for Down syndrome. I was ecstatic! We laughed together on the phone at what a silly thing most of us take for granted: that the majority of us don’t face any major health complications on a day-to-day basis. So far, baby’s health looks good outside of the heart condition, which is such wonderful news! That doesn’t mean we are in the clear for ALL health concerns, but the doctors currently have us cleared for other health issues that can be identified on an ultrasound in-utero. Each time we receive a clean-ish bill of health, I do a little victory dance with baby along with many, many prayers of thanksgiving.

Everyone has struggles – This little one’s extra chromosome has opened my eyes to a whole new world of mommies and daddies who experience struggles very similar to ours. My biggest consolation this far has been reading and hearing from other moms who’ve traveled down this special path. Shortly after receiving our babe’s news, I fell into the rabbit hole of social media and discovered a whole world (the “secret club” I referred to above) of support from groups of ladies I’ve never met. I found instagrams, facebook pages, articles and books all chronicling unique journeys of precious babes, but all having an underlying tone of joy and hope. Some of these journeys include very tough roads, everything from multiple surgeries to cancer, but those parts of their journeys are never the focus. The focus is on the love shared and all the wonderful things to celebrate about their lives. My family and I have also heard from countless others who have their own crosses to bear and who can, in many ways, share our pain but who choose to celebrate life! We all have our own personal sufferings – none greater or worse than the next, but what a reminder for us to be kind to each other since we all have this common thread. I’m reminded of St. Lawrence (read his story here), who after being sentenced to death by being tied to a grill over a fire, was so full of love that he joked to the overseeing judge “Turn me over – I’m done on this side!”

Life is full of little joys if you look in the right places! Enjoy your weekend – lucky for me, Aggies have a bye week so my heart gets a rest this Saturday.

I have to start this post by sharing Mitch’s and my immense gratitude for the love, kind words, hugs, and general support we’ve received since sharing our special news. There really is a need in the English language for a word that expresses more than just a simple “thank you”, but for now that’s what I’ll have to stick with. Just know that there truly aren’t enough words for me to convey how incredibly blessed we’ve felt over the past several months.

As you may have imagined, it’s taken us (me) a bit to reach an emotional level where I am truly at ease talking about our journey with this diagnosis with just about anyone who’s interested in listening.  Up until now, we’d shared the news with the majority of just our family and friends (who, from herein I shall refer to as “family” since that’s a more accurate description for them). If there ever was a time that I witnessed Divine intervention first-hand, it was through the grace in the responses I received when I told our families about our baby’s extra chromosome.

Naturally, the first phone calls were to our Moms. Who better to empathize with our situation than our own mommas who understand exactly what it feels like to fear for your child and the wish you could take the pain yourself instead of having to watch your child suffer at all? I had been in touch with my mom all day, but I remember the exact moment on the phone with my mom after leaving the doctor’s office and telling her our baby would have Down syndrome. The tears instantly flowed on both ends of the phone, both of us searching for answers and understanding. I know in that moment my mom wished she could have her mom (my Mah) there with us.

If you knew my grandma and know my mom, you know that they share a certain mothering style of their own. They love their kids fiercely, but simultaneously have high expectations for each and every one of them (in my grandma’s case – all nine of her kids and all 30+ of her grandchildren). In times of trouble, there’s no one you’d rather have by your side. They are problem-solvers by nature, and they’ll hold your hand through every moment of heartache. As a child, there’s nothing more comforting than hearing your mom tell you that everything is going to be okay, but my mom had more to offer. At some point in our conversation, after working through the tears and the it’s-going-to-be-okays, my mom said with absolute assurance,

“someday we’re going to look back on this and wonder why we ever cried tears of sadness.”

That’s the blessing and wisdom she has as a mom – to know the unadulterated bliss that comes from motherhood that I’ve yet to experience. To know (and I’m stealing her words again here) that your children bring you the purest forms of all emotions: joys and sorrows unlike any other experience in life.

I wasn’t there when Kathy (Mitch’s mom) heard about our babe, but by the time I saw her, I could feel all of the love she has for Mitch and Michele out-poured for me. Kathy is the kind of mom that all of Mitch’s friends call “Mom” because there’s no better descriptor for her. She’s a social butterfly because she has a profound genuine interest with anyone who’s looking for an ear to bend; she’s an excellent listener and will share in all of your excitements and sorrows as though they are her own. In true mother form, she came over to our house and I took her through all of the facts we knew at the time.

She patiently let me explain from start to finish, and at the end of it all she said,

“Well, I just wanted to come over and check on you. I did talk to Mitch but I’m sorry all of this is harder on the mother.”

Kathy didn’t need to tell me that she would love her grandchild regardless of ability, growing and learning curves (although of course she did say all of those things) – I already knew that. She has proven her love as a mother ten times over and I have no doubt her love as a grandmother will be something spectacular.  To have Kathy give me all of her concern in those raw moments was something that, as a mom herself, she knew I needed. God gives all of us a certain grace in times of vulnerability and sends us angels at exactly the right time with precisely the right words to give us peace, and that’s what Kathy did for me that day.

If there’s a “next in line” to love on our babe – it’s our sisters. I made several phone calls to my sister (Bridget, BB, Beebs, et al.) throughout the day after receiving the initial “high risk” phone call from my OB doctor. I am embarrassed to admit how much I abuse the fact that she’s a PA for inside medical knowledge. BB is the quintessential medical professional with exactly the right amount of empathy and compassion. She calmed me down and walked me through the next steps and reminded me that there are such things as false positives, so no need to overreact without knowing just what “high risk” for Trisomy 21 meant (I spent the ensuing hours scouring the internet for any article that would tell me my likelihood of a false positive).

Later in the afternoon, after confirming what could be considered “the worst”, I talked to BB who reiterated her unconditional love for our sweet babe, but also added a twinge of sisterly love (and Baringer competition) by saying

“but I was supposed to be the one to have a baby with special needs!”

In true BB form, she’d given me one of those laughs that make you shake from your belly and remind you that you probably should get back on a diet as SOON as the baby is born. We laughed and I reminded her that hope was not lost, after all God may grant her the same gift he’s given us. And lucky for her, she’ll have a front row seat and all the aunt snuggles she could ever want.

If there is another competition to be had, it will be between BB and Michele for love of our baby. Michele and BB both shared tears with me and I think for every single tear I cried, they’ve cried two. I didn’t see Michele (Mitch’s sister) for several days, and at that point there wasn’t much left to say, but instead of more words she gave me a big bear hug through her tears and promised me to shower our babe with all the hugs and kisses, to give her unique kind of love and attention that she gives to the special needs kids she works with every day (more on that later), and to teach my child the ins and outs of all hand-eye coordination sports. Thank God because Lord knows neither Mitch nor I are blessed in that realm.

I could honestly go on and on with all the uplifting words and thoughts we received in all the days since we’ve shared our special announcement, and not a single bit has been lost on me. God has a way of sending your guardian angel on missions just when you need is most. In my moments of despair, I’ve received simple words and acts of kindness from the ends of the earth (literally friends and acquaintances from all over the world), and in those moments I realize this baby is already changing my life for the better. I’ve seen God’s grace first-hand through the guardian angels sent on missions by everyone who’s reached out to me and Mitch since we began this uncharted path.

For that, a million thank yous. We are eternally grateful.