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There’s something magical about snowfall that gets me every time. As a native Texan transplanted to Pennsylvania, I haven’t grown accustomed to the regular snowfall. There’s a brand new excitement that accompanies those little white flakes each time they arrive. But after a few days, after the snow has settled, and the dirt and salt have mixed with the pure white, I get tired of it. I don’t particularly enjoy de-icing my car every morning or crunching throw the snow in and out of parking lots, and the snow eventually makes everything look dirtier instead of the crisp white beauty on the first day of snowfall.

There are probably a lot of things in our lives that mirror my feelings on snow. I’m so excited initially and then after a while, I forget about the excitement, settle into a routine and suddenly the magic is gone. When we brought Regan home from the hospital, I was overwhelmed at the care she needed but relieved and grateful to have her in our home. The same applied after her heart surgery. My feelings of relief and joy filled my heart as I knew Regan’s heart was repaired. We eventually settled into a routine of a life typical with a new baby at home. Although there are days of frustration and exhaustion, I’m trying not to lose our luster for her life.

There is not a day that goes by that I don’t give thanks for her healing, but that doesn’t mean I don’t have times of complacence. One of my favorite quotes is

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

We are blessed to have a living miracle in our lives, but this quote still resonates with me. It’s so easy to forget the miracles we see in our own lives on a daily basis. Witnessing the human development is a constant reminder of God’s omnipresence in our lives, and the daily reminder is just what I need.

Regan has started babbling some new sounds this week, and I feel like we’re on the verge of a speech-splotion (speech-explosion). She started looking at me and saying “NANANANANA” and I REALLY feel like she’s trying to say “Mama” (that’s what I’m telling myself– roll with me, people). She’s consistently transitioning in and out of sit and she’s on the move all around the house. Our next big goal is for her to start pulling to stand (Lord help us), but I think we have some work to do before we get there. Sometimes I imagine Regan thinks, “these people are seriously never satisfied. I finally transition, sit and crawl, and they always want more!” Regan gives kisses (mostly to Walter), high fives and we are working on waving and blowing kisses. She loves veggie straws, dislikes puffs and cheerios, and we are working on straw drinking.

All of these little miracles are a blessing to all of us –think about all the miracles you have in your life!

Happy Friday, my long lost reader-friends! I must first say that I’ve greatly missed this little hobby of mine, and I fully intend on getting back to my regularly scheduled blog-writing. The past couple months have seemed a little crazy (haven’t they??), and blogging is the first thing to fall to the bottom of my priority list. The great news is, we’ve been busy in the most wonderful ways!

We travelled for Christmas to wonderful Texas to spend some time with my family. I got to meet my nephew (!!), see my niece, and Regan enjoyed the time she got with her precious cousins. It’s not always easy to live so far from family, but it sure makes me treasure the time we have together. We came back home under the weather, Regan had her first bout of sickness since her surgery (praise!), and we rang in the new year with a good night’s sleep. Just a couple weeks after being home, I made the trek back to Houston to participate in the Houston Half Marathon with my sister in support of Friends of Down Syndrome. It was an honor to support an organization that strives to supports adults with Down syndrome to be active members in the community and economy. We got to see some of Regan’s buddies along the way, and we had so many wonderful supporters cheering us on (thank y’all!). We are happily settled back home in PA now, and enjoying the winter weather, while mostly staying cozied up inside 😊 . I hope y’all had a wonderful holiday season and have kicked off the new year with a bang!

It seems Regan is growing at lightning speed these days. Everyone warned me this would happen. After she was born, I wanted to rush time to get to her surgery so that she’d start feeling better. Now all I want to do is hit the pause button so I can enjoy extra time with her drooly kisses, inchworm crawl, and endless dadadadada as she chatters all day. To me she is growing too fast, but the reality is she is behind on the development curve.

There is this amazing tribe of moms on social media who are strong advocates for their children with special needs. One mom I follow wanted our tribe to share one struggle each mom faces as a mom of a child with special needs, and how we each cope. Regan is young, and I’m sure this “one thing” will evolve as she gets older, but right now her development path is tough sometimes. I see other babies reaching milestones with ease, and that’s not EASY for me (see what I did there). There is a part of me that is envious of other parents whose children glide through these phases as intended with little to no struggle. It’s hard that I can already see the uphill battle Regan has before her. The flipside is, I get to see her strength DAILY.

It still leaves me asking internal questions like –am I doing enough for her? Providing all the right tools she needs to succeed? WHEN will she get there? Will all her developmental milestones be delayed? And last (but not least) WHERE ARE HER TEETH? I’m not exaggerating when I say I look for them every day. At nearly 14 months still not a peep from any of her pearly whites. But guess what – they’re still not here and they’ll come in when they’re ready! (And me looking for them every five minutes certainly isn’t speeding up the process—that old “watched pot” adage seems to ring true here.) Just like everything else in Regan’s development, it will happen when Regan is ready.

I am on Regan’s timeline here, so we celebrate every jump in her development! Little things like her ability to eat a veggie straw on her own make my momma heart soar with pride. She continues to show me that patience is the greatest virtue and its reward is seeing everything as a miracle.

 

I found myself today in an extra Christmas-y mood, ready to take on the day of baking and sharing treats with some of those who have literally helped us survive the past year. For the past several weeks, I couldn’t help but think of how I was feeling “at this time last year” (ß which has also seemed to be a theme for the past several weeks here on the blog). I have written in the past what it’s like to have a baby in the NICU, but I didn’t tell it from a Christmas-time point of view. While it may seem like the Christmas spirit would make it a little easier, for me it made it even more difficult. For those 16 days, my heart and life stood still. Every day was a day of anxiety, fear of what they would tell me next, and never certain when I would get to take my most treasured Christmas gift home. While I had a small taste of it, I cannot imagine the hearts of families whose babies spend months and years at the hospital. So this Christmas season (and probably every future Christmas season), a piece of my heart will be with those who are aching to bring their babies home and celebrate a “normal” Christmas.

It’s been so fun to celebrate with Regan this year, while last year I was in a NICU haze, and not quite sure how to ask for help from those who care for me the most. This year, we got to decorate our own tree [last year, I didn’t get to the tree before Regan made her debut]! We got to bake cookies “together” (mostly Regan sitting in her high chair watching me), and listen to Christmas music while shopping (online). There are so many little things that I’ve learned to not take for granted that I can thank Regan for, and there happen to be a lot surrounding her birthday and Christmas. This year, we will celebrate Christmas in Texas with my family since I’ve gotten two Christmases in a row at our home in Pennsylvania.

I love to hear other family Christmas traditions – I’d love to hear yours!

Happy Christmas season, friends. Squeeze your families tight!

Today is a happy day, not just because we are in the full swing of Advent, all things Christmas and the general joy of the season, but also because today is the celebration of the Feast of the Immaculate Conception. It is a celebration that Mary was preserved from original sin from the moment of conception. It’s easy to forget that all our lives are really a series of the answer “yes”. Sometimes it’s not even us saying yes, but other people taking that step for us, and then leading us down a path predestined by God’s plan. In Mary’s case, it was her mother, Saint Anne. In the Qu’ran, it is said that Anne thought she was going to have a boy, and upon giving birth to Mary proclaimed,

“Then, when she brought forth she said: My Lord! Truly, I brought her forth, a female. And God is greater in knowledge of what she brought forth.”

I’ve mentioned before the analogical story of having a child with special needs is like embarking on a vacation to Italy, only to have your plane land in Holland. It’s shocking and scary and not at all what was planned, but a beautiful trip nonetheless. I realize that there are people who see our situation and think how difficult it must be, and the fear of challenges lie ahead. But if there’s one thing I’ve learned is the power of humility and just saying “yes” to God’s plan. It doesn’t mean it’s not scary, but it has forced me to be completely humbled and has given me this beautiful gift of complete faith. You see, when you feel as if your world has shifted in a way that is unexpected and not part of your plan, and quite frankly not something you had ever wished for, you begin to surrender to an understanding that this life isn’t always about what you want. There’s a bigger plan out there for us, friends, and that means sometimes the path is scary, or doesn’t make sense, or doesn’t fit our definition of success. But that doesn’t mean it’s not beautiful! Trust me when I say that sometimes the most beautiful days follow the stormiest nights.

So once St. Anne said yes, then it was Mary’s turn. Did you ever wonder what would have come of our world if Mary had said “no?” Our salvation completely rested on a young girl who rightfully feared her own persecution, but she completely surrendered herself to the benefit of all of humanity. Mary is a powerful force, and yet that power began with a simple yes to God’s plan. In a sense, her power began with a response in humility. What a lesson for us, especially in today’s world.

I came to understand Mary’s power in I asked begged for her intercession on my behalf. I asked her mother-to-mother, to please give me her grace and to spare the life of my child so that we could share in her joy. I’m sure Mary had these moments, too: begging God to spare her son, but that wasn’t the plan, and so once again she surrendered. She now sits on her throne as the Queen of Heaven (what a title!) with her son by her side. You see, the darkness led to her beautiful day, too.

I come from a long line of strong Texas women, and I like to think that if Mary were around today, she’d have a standing invitation to Sunday dinners and Christmas parties at my Mah’s house. Mah had a deep devotion to the Blessed Mother and her daily acts of love and service were her constant yes-es. It takes a strong yet humble heart to live such a way, and Mah was the embodiment of that lifestyle. I now seek Mah and Mary’s interventions for my daily “yes”.

 

Welcome y’all to my new and improved website! I’d love for this blog to grow with our family, and this seemed like the logical next step! Thanks for hanging with us so far and hopefully there will be more exciting things to come as we all grow together.
I figured it was also time for a general life update on our family and Regan. Regan is now 11 months and it completely blows my mind that she’ll be a year old in only a few weeks. I’ve had a lot of “this time last year” flashbacks over the past few weeks, and “this time last year”, I was blissfully unaware that I was only weeks away from having a baby. I had not a single thing packed and the nursery wasn’t quite done and I thought I had plenty of time to spare. Regan started teaching me things from the very beginning!
Regan is working very hard on achieving her next set of milestones. We hit a bit of a plateau after she breezed through her months following surgery. She quickly started rolling over, had complete head control, and started babbling not long after. Her biggest focus over the past weeks and months has been sitting.
One of the most common things I heard in my conversations with other moms who have children with Down syndrome was ‘you’ll be blown away by some things your child does, and you’ll have real struggles with some things.’ That has turned out to be so accurate. So we celebrate big at every milestone and continue to work hard to achieve the others. Sitting has been tough, and it’s led to other delays. Most therapists have told us that until she can sit confidently on her own, her fine motor skills will follow a similar delay. In part because she seemed to be having a hard time, we have decided to pursue outpatient therapy. With outpatient therapy, we go to a therapy center and she sees an occupational therapist and a physical therapist each week. It’s a little more intense than the Early Intervention therapies and I think it’s the right fit for us right now. Regan seems to be improving, and I’m SO proud to share we officially have a sitter! She can hold a seated position for probably 20-30 minutes, but she can’t yet transition in and out of a seated position on her own. She is desperately trying to crawl and has started to pull her knees under her! All progress in this house is slow and steady and she is one determined little girl.
Under the “blown away” category, we have an amazing eater. Regan still has no teeth, so we are enjoying her gummy smiles and feed her anything that can be mashed. She eats pretty much anything we give her, including avocado, chili, soft meats, soft veggies and of course tons of baby food combinations. She hasn’t grasped self-feeding yet, but we are told that will come with the development of her fine motor skills, which will follow the development of her sitting. The human development timeline is truly amazing, and I’m happy I’ve been given the gift of seeing it in slow motion.
Regan has had a series of hearing tests since she was born. She has always failed some portion of these tests. There are two tests done – one is more sensitive than the other. She has twice passed the “more important” (the doctors’ words) test. It seems this one is a larger indicator of true hearing loss, not caused by external factors (such as fluid in the ear). With that said, she’s failed the more sensitive test twice, and they think she has fluid build-up in her ear. So we are headed to the ENT in a couple weeks to see what they have to say about that.
I think I mentioned this before, but we received a clean bill of health from the cardiologist and we don’t go back to see her again until MARCH!
We are thankful for every healthy day we have here, and we keep working on her developmental milestones progress!