Welcome

You could probably guess what this week’s blog post would be. There are Mother’s Day celebrations happening everywhere, so first let me wish all the mommas (of all kinds!) a very Happy Mother’s Day.

My mom and I have been watching the morning news together this week, and the Today show featured stories about moms nominated by their kids to be honored in one special way or another. It got me thinking about what I would write if I nominated my mom, so here it goes..

I would like to nominate my mom for the Mother’s Day honors for a multitude of reasons. She was one of nine children in her own family; she was the exact middle child. She went on to have three kids of her own and has always said that we are each her favorite (jury’s out on which one of us is ACTUALLY her favorite). I’ve mentioned in previous posts that my view of my childhood is a charmed life. I credit most of this feeling to my mom. It wasn’t as if we were without struggles but she always made each of us feel like the favorite.

I think every mom has some “isms”, and my mom is no different. We like to laugh at them now, but truly her habits are what made each of her kids successful. She had high expectations of us, teaching us to speak and act for ourselves from a young age. She raised us as my grandma (her mom) raised her – with deep roots in the Catholic faith and a foundation built on family. When times got tough, it was rare that I was even aware of our struggles. She protected us as kids and prepared us as adults.

She’s funny especially when she’s not trying to be and tells me things like “now don’t go tell that to your friends” when she does something funny. A lot of my personality is from my mom, whose personality is a lot like my grandma’s, and I hope all of that translates into motherhood.

She taught me how to be a mom without really intending to. When we found out about Regan, she cried every tear with me. She says that for whatever her kids feel, she feels it to the power of ten. She loves us and now her grandchildren fiercely and guides me in my role as a mother. She was just as baffled as me when we found out about Regan’s diagnosis but even through the tears I could feel her love for our sweet babe. I knew she would help me navigate this brand-new world in whatever capacity I needed. She helps me continue to learn, taught me how to be a strong Texas woman but keep my patience and compassion for others. Thank you for everything, Momma. I hope I’m half the momma you are.

Now for laugh, here are some of her “isms”..

“Always wear your retainer – I paid for those teeth.”

She got talked into running a half marathon by my dad, “forgot” to train for it, then she went for a 9 mile run THE DAY BEFORE the half marathon to “see if she could do it.”

She quoted a line from modern family in saying “I don’t want to be right all the time, but I just don’t live with the right people for that.”

When the song was popular, she sang (with full conviction) “WHO LET THE DOGS IN??”

While out to eat, my brother ordered a Lone Star beer and my mom said, “A Lone Star?? I haven’t had one of those since the 7^th grade!”

She’s famous for saying, “If I could’ve had lessons in ______________ (insert any Olympic sport here), I could’ve been REALLY good.”

She once told my sister at a swim meet, “If you could’ve just moved your arms faster, you’da beat that girl next to you.”

We love you so much, Momma.

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I went for a walk this morning with Regan and Walter (#besties) and I couldn’t help but think of the anticipation of the Summer season. Even as an adult, the springtime carries an excitement to it as the long Summer days lay ahead. As a kid, the Summer meant summer league swim team, spending literally all day at the pool, walks on the golf course to my best friend’s house on the other side of the neighborhood. It meant a deep brown tan, a constant stream of kids and teenagers in and out of our house, Monday night swim meets and dinners at Sweet Mesquite.

Today was a lot like the day I got the phone call regarding the genetic test results during my pregnancy. It was a beautiful day just before July 4^th weekend and I was happy as a clam taking my morning walk. I felt the same today – although nearly four seasons have passed between that day and today. Figuratively and literally four seasons have passed. I have grieved, wondered why, wondered how, wondered if I am capable. I have found new friends and reconnected with old friends, who’ve both kindly offered their support. I have found that I’m now part of this “lucky few” club – one that I never would’ve wished to be a part of, but now understand its beauty.

I imagine that having children inevitably makes you look at the world through a new lens. You notice things you maybe wouldn’t have appreciated in your previous life. I had a phone call with a fellow “lucky few” parent just a few days before having Regan. I discussed with her my curiosity at the difference between having your first born with Down syndrome versus later children. We obviously will never know any different, but she was confident it has made her a better mother. She said you’ll parent your other kids the same way you parent your first, which forces you to focus on development more than you maybe would have otherwise. You’ll have a much greater appreciation for each little milestone because you’re so aware of the extra effort it takes to get there.

As I mentioned last week, we had Regan’s Early Intervention evaluation and we will begin therapy with an early education specialist in a few weeks. Last week was the first time Regan was able to have tummy time following her surgery (for those of you wondering, it was six weeks). Admittedly, I wasn’t religious about tummy time before her surgery because it seemed to really exhaust her and my overprotective mommy self would only do it a couple minutes at a time. With all of that said, we resumed tummy time last week and this week, and Regan has made incredible strides in such a short amount of time. She rolled over (tummy to back) for the first time just yesterday! With no one around, I jumped and clapped and probably looked like a looney tune dancing around our living room. Let it be known this will not be the last over-reaction from me.

Shifting gears here for a minute – Mitch turns 29 on Monday and I don’t want to miss the chance to publicly wish him a very Happy Birthday. I was recently telling a friend of ours (Hi, Sarah!) how much the first few months of Regan’s life really tested our marriage. That is the most honest statement I can make without sugarcoating how difficult things were from December 5 to March 9. Both of us were running on fumes and had nothing left to give to our marriage at the end of each day. I’m so happy to say we are both in a much better place and I pray that in difficult times in the future we turn to each other for support rather than survival. To Mitch I say thank you – thank you for sticking it out with me despite all the times I wasn’t fair to you, thank you for learning how to be a parent right long side me even when it was (is) most difficult, and most of all thank you for giving me the most beautiful girl in the whole world and I can’t wait to see her riding on that tractor with you very soon! Also thank you for giving me the most generous maternity leave I could ever ask for, and I promise I’m getting back to work (<- this is actually true – I have finally returned to FEI on a daily basis during Regan’s morning nap time, and I couldn’t be happier to be working with my boss again). Happy Birthday – I love you!

We can’t wait to see all the continued life surprises that are in store for us – thank y’all always!

I had the distinct privilege of attending the baby shower of my dear friend, Amy, today. Amy has been a big support to me through all of our journeys with Regan. As I mentioned in a previous post, we all have our own paths through life and I’ve been blessed to share Amy’s as much as I’m blessed she’s chosen to be a part of mine. Going to a baby shower after having a baby gives a unique twist to the fun. You’re completely aware of how much their lives are about to change, flipped upside-down in the best kind of way. They’re about to experience a whirlwind for which there is no preparation, but also a brand-new kind of love that’s never touched your heart.

Regan had the chance to be a social butterfly and it should come as a surprise to no one that she absolutely soared. I was talking to Amy’s mom and I told her three words that have stuck in my head for the past several weeks – WE MADE IT. We made it to the other side of open heart surgery, where we’re sure she’s feeling much better and can function like a typical family.

We’ve had several exciting events over the past few days. Regan has been left alone twice (this was more of a success for me than anyone else, ha). We had a cardiology appointment last week and y’all – we don’t have to go back to the doctor for THREE MONTHS. This is almost a bizarre thought for me. She’s eating like a champ and I’m no longer paranoid about that, although I’m admittedly still tracking every milliliter she eats – it’ll take me a while to give up that habit. We are now able to focus on the other (more exciting!) milestones with Regan.

I never thought I’d be excited to see a therapist (physical, not psychological – though I could make a case that I need the latter more). We had Regan’s Early Intervention assessment last week. She’s falling slightly behind on the typical chart, particularly in the area of head control. This is due in part to her inability to be on her tummy for the past six weeks (since surgery). It’s also in part, of course, to her low muscle tone associated with Down syndrome. In most other areas, she falls in the typical range though still slightly behind. We will start meeting with an early childhood specialist weekly to get some exercises and movements to do to improve her muscle tone. We’ve also started some sign language with the hopes that it will begin her communication skills

We’ve taken Regan out for walks, out to family events and a baby shower, and all of this probably sounds like a ‘what’s the big deal’ statement. This falls under the category of ‘things I didn’t know I would appreciate so much’ before I had Regan. Thank you to everyone who oo-ed and ah-ed over Regan if you’ve seen her out – you’ll never know much proud that makes me feel, though I’m sure every mom feels a unique sense of pride in those moments. Thank you to everyone who has asked how we’re doing and who’ve been keeping up with our progress over the past several months. I can say, as I mentioned in last week’s post, that our world has certainly shifted again, and luckily this phase has a lot less stress.

I hope y’all are enjoying the Spring weather – Happy Divine Mercy Sunday!

 

Today’s post will be a short one, as there’s not much that needs to be said on the pinnacle of the liturgical year. We have been immensely blessed this year with health and happiness.

I haven’t posted in a while what our daily life is like, and those who aren’t familiar might be shocked at how dramatically it’s changed over the past month. Upon returning home from Regan’s surgery, she still had the NG tube as she was recovering from major surgery (seems so obvious, but so easy to forget when you saw how happy and relaxed she was). We had an appointment with our local cardiologist four days after returning home, and about two minutes into the visit she said, “and WHY did they send her home with that tube??” We discussed Regan’s feeds, ability to eat, and my best guess at how I thought she would do without it, and by the end of the conversation she told me, “let’s just take that tube out.” A part of me was in shock – what will we do without it?! That little “accessory” (as I’d come to think of it), was quite literally a life preserver for us and I was scared to swim without it. Our Cardiologist reassured me that Regan was at an excellent weight (remember, a little too good, meaning she was gaining a little too quickly for her height). So we ventured home and I reassured MYSELF that we could always put the tube back in if absolutely necessary – Mitch and I had become experts at that point, as Regan had become an expert in pulling it out.

Out the tube came and so began the adventure of monitoring Regan’s eating. We went from a structured schedule of alarms and rigged feeding tube setups throughout the house to just waiting on Regan to decide whether she was hungry. It was a struggle for both of us – I was learning how exactly she would tell me if she is hungry and she was learning the very definition of hunger.

Fast forward to today, and Regan is aaaaalmost up to eating what she should. She’s exceeded the minimum set by our doctors, but I think she’s still finding that happy medium for herself. She’s still an excellent sleeper and has no issue sleeping through the night. In fact, I generally wake up in the morning and walk into her room to find an awake, smiling little girl just waiting for me to come get her. She’s down to ONE MEDICATION. Did you hear me shout that from the mountaintops?! ONE MEDICATION. All this within a matter of weeks from open heart surgery. She never ceases to amaze me.

We have returned to a “normal” life. We take her to church (she got to carry the gifts on Palm Sunday!), I take her to run errands with me on occasion, and we have been taking regular walks in this gorgeous Spring weather. I think I can speak for Mitch when I say our stress levels have plummeted and I’m no longer living as a paranoid recluse. We look forward to each of you meeting Regan and sharing in the immense joy she brings to this world.

Happy Happy Easter, y’all!

 

 

Exactly two years ago today, at almost the exact time as I write this post, I was walking down the aisle toward Mitch on my Dad’s arm. It was a day I imagined, as most young girls do, from a very young age. I daresay the day (ok, weekend) exceeded any expectation I could have imagined. From the dress to the desserts, every detail was a dream and I wouldn’t have changed anything even if I could. On that day, I felt like my life was beginning a brand new chapter, and in hindsight, it very much was. What I couldn’t have possibly guessed or imagined was how and where this beautiful life would take me and Mitch.

One year ago today, Mitch and I were strolling through the streets of Florence, with gorgeous blue skies and waking up to the toll of the Duomo’s bell tower. With not a care in the world, we spent two weeks in Italy, eating and drinking and toasting to one year of marriage.

A few days after arriving home and readjusting to the daily grind of American life, I found out I was pregnant. I ran downstairs and told Mitch, “you’re going to be a Daddy!” Again, it felt like my life book was turning the page to a new chapter and Mitch and I were on pins and needles to read each word.

As y’all know, our lives came to a screeching halt on June 30, 2016. If you’re a new reader, you can read more here. Now I have the beautiful gift of hindsight and know that the screeching halt was really just a stop sign and quickly learned how to move forward after receiving what was then devastating news.

I’ve been thinking about what I would say to myself if I could go back in time. I would tell myself to expect the unexpected. Nothing can prepare you for what lies ahead, but don’t let that keep you from living in the present. God has very special plans for you (and for each of us, really), and those plans are not always understood by mortal minds. Treasure time with your husband – the stresses of day to day can and will be overwhelming, but you’re a team more than individual players and remember that neither one of you could be successful without the other.

Down syndrome is a scary diagnosis, as is any health-altering diagnosis for your child, but it’s not world-ending. Regan has brought us so much joy and though there will continue to be challenges, we could not have imagined one year ago or two years ago the happiness that would befall us after such an unexpected life turn.

My post this week is going to be a little disjointed as I’ve had two prominent thoughts on my mind this week. Of the many lessons Regan has taught me, I’d say maybe the biggest, all-encompassing one is patience. I consider myself to be a not-very-patient person. Maybe the construction industry didn’t do much to help this, but I can’t say I can blame only that. I get impatient in the simplest situations – at the grocery store, the pharmacy, the doctor’s office, the post office, Babies R Us ( <- the worst culprit of them all) – basically anywhere that things don’t go smoothly and I have to wait on someone else or there is some kind of issue with the errand I’m requesting.

I’m not sure how this happened, but it seems the clouds parted after we had Regan. I feel like I stumbled on the pot of gold at the end of the rainbow because suddenly, everything fell into place. It made me realize that sometimes I am on the receiving end of someone else’s patience. I certainly am not always “on my game”, and let me tell you, navigating Down syndrome and a congenital heart defect is no easy task. My “science” credit at A&M was botany and I took it at Blinn. [For those who don’t know, Blinn is the community college that also serves lazy A&M students] I’d love to say I breezed through the course, but I majorly struggled and now you know why I didn’t do anything in the medical field for my profession. I should also note that the only other science-ish class I took was Psychology, and I got a C. “C” is for “C” ya later, science. With that said, understanding all the diagnosis-related science is difficult, and I study it as if I’m in class all over again.

The reason I say it feels like we found the pot of gold is because our team of doctors, pharmacists, and social workers has been nothing short of spectacular. I mentioned in a previous post how much we love our local Cardiologist, and I truly can’t express this enough. She has been patient beyond belief with us. She gave me her personal cell phone number (have you EVER heard of a doctor doing this? Me neither.), and she answers my questions at the ready without batting an eye. She personally texted me on the day of Regan’s surgery to ask how everything went and how I was feeling. Our pediatrician is no different – she and our Cardiologist are friends and she has called me on a Saturday to give me bloodwork results over the phone with adjusted instructions based on those results. Their treatment of Regan feels like a team effort and they’re letting me be the team captain even though I’m arguably the least experienced among them. Our pharmacists have gone above and beyond, contacting our insurances (yes, plural) to confirm coverages. We have met with probably a dozen social workers to make sure we are set up with Early Intervention, and to help with anything else we need. The social worker at our pediatrician’s office coordinated everything with the medical supply company to make sure Regan had all the supplies needed for her feeding tube. It took several phone calls and multiple shipments to get the correct supplies, and I can’t even tell you what a blessing it was to not have to be the one to make all those phone calls. She also helped us get set up with Medicaid and cleared up the VERY CONFUSING paperwork I received once we had it arranged. Needless to say, it literally takes a village and I’ve been on the very fortunate receiving end of the patience of said village. I’ve said “thank you” more times than I can count the past four months, but I think the best way to show my thanks it to pay it forward with my personal acts of patience.

The other major time I was taught my Regan to have patience is when she was in the NICU. I learned so many lessons while there, but the biggest one was patience. It’s hard to explain how it feels to have your baby in the NICU, but I’m going to do my best here. Maybe the one benefit I had was that we knew Regan would be in the NICU after I delivered. The downfall was the prediction was a 4-7 day stay in the NICU; obviously, no one could predict that I would deliver at 36 weeks. In hindsight, it’s obvious that delivering early would extend her time in the NICU, but being in the fog of postpartum didn’t help to see that clearly. I had just delivered Regan and was in that blissful state for the subsequent 48ish hours while I was still at CHOP myself. Regan got admitted to the NICU and I was discharged from the delivery unit about 48 hours after I delivered. Here’s where the hard part begins. So your baby is in the NICU and you’ve just delivered and don’t quite know what to do with yourself. It’s an unnatural feeling to be separated from your baby, even as a first-time mom. You feel the need to be by her side 24/7, but it’s both physically impossible to do that and physically exhausting to try. The hospital has sleep rooms, but the best word to describe them would be “sterile.” There’s literally only one bed and one chair in the room: imagine an even-smaller version of a college dorm room. The nurses are feeding your baby on a strict schedule and you’re desperately trying to be there for as many feed sessions as possible. You start to feel like your baby will know the nurses better than she knows you and that is both a devastating and terrifying thought, even if it is absurd. There are some nurses who give you the reigns when you’re there, and some who are so “by the book” that it leaves you feeling like they know what’s best for your baby more than you, making you question your confidence is a mom, which is already waning from this whole ordeal. You have this great urge to fix everything but you’re completely powerless through the whole process. It’s the first time you’re forced put all your faith into complete strangers, even though every bit of your logical brain knows their completely qualified for the job. There were days I wanted to take Regan and run home, and days when I felt like she was certainly in the right place (see: SVT episodes). It’s true when I’ve said Regan’s already taught me much more than I’ve taught her. There will be more times in her life when I need to lean on the professionals and it’s not easy, but she’s teaching me how to have patience. I’m certainly not the first mom to go through all of this, and I won’t be the last. In each situation, I think each mom would say they learned a new world of motherhood, completely led by her child.

One of the doctors said something that I’ve repeated many times – “Regan is writing the book and we are the ones reading it.” He meant it in a medical sense, but I think it’s a bit of an umbrella statement for Regan’s life. Every day we’re turning the page, patiently waiting for the beginning of the next.