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Howdy, y’all! One of my favorite traditions at [the best university of all time] Texas A&M (of which I am a former student) is saying “howdy” to those you pass on campus. It’s so friendly and warm and has become my daily greeting (just ask Mitch, who has adopted it for himself). It’s been awhile since we chatted and a lot has happened with us and the world since we last talked. Between howdies and hurricanes, it seems the world has shifted somehow. Did y’all now that this is the first time in history that Category 4 hurricanes have made landfall back-to-back? When I look back at the past year, it’s easy to feel like our life has been that of a Category 4 hurricane.
Having a child with a disability opens your eyes to your own heart and the hearts of those around you. I think that’s true in all times of despair and quite frankly, desperation. Our country had a front-row seat to this in the wake of the devastation after Hurricanes Harvey and Irma. My faith in humanity was completely restored as I witnessed Houstonians serving each other as hand-in-hand rescues were made, families were reunited, and refugees were served in shelters city-wide. It makes me realize that when push comes to shove, we (the collective “we”) are ready and willing to serve our neighbors in their times of need. I’ve mentioned in previous posts that I experienced this feeling first hand in the days and months following our prenatal news.
I’m not sure why sometimes it takes disasters to see the warmest parts of people. I can tell you that since having Regan, I’ve found myself wondering why it took me having a child with special needs to find this whole world I never knew existed. B.R. (before Regan) I lived in a bubble of comfort in which I never experienced any serious hardship. In the most literal sense, I lived in a state of ignorance. I.R. (in the time of Regan), I’ve joined this new world with parents and family and advocates ready and willing to help, like a hand-in-hand rescue in a Category 4 hurricane.
Regan recently had an appointment at CHOP (Children’s Hospital of Philadelphia) where she was evaluated as a new patient in their Trisomy 21 Program. She was evaluated by a pediatrician and speech, occupational and physical therapists. They all emphasized that Regan is doing fabulously so far, measuring developmentally from 6 to 9 months. She’s 9 months, so she is either on target, or not far behind her developmental milestones. This is absolutely incredible, considering that she was in heart failure for 3 months and was very limited for six weeks following her open-heart surgery. Her success is due in no small part to our “village”. Our families, our doctors, our teacher-therapist who comes weekly, and all the prayers and love we’ve received in her 9 months of life have given her the support she needs to reach these milestones.
I write this because I could have never imagined how desperately I would need help, warmth, a “howdy” from a world I never thought I’d be a part of. A world, if I’m honest in my deep dark thoughts, I was afraid of. I write this asking if you’re living in a bubble of comfort –something I know well! –I ask you to look within and look around to see how you can share your “howdy” with someone in your neighborhood. I was ignorant to this before and I wish I hadn’t been.
I love the support we’ve seen in this country in the past month. I’m sorry that it’s been through the eye of a storm, and I continue to pray for this impacted by Hurricanes Harvey and Irma. I hope that we see a calm AFTER the storm now, and that we can continue to spread our “Howdy” in our worlds.
Love y’all – gig ‘em, Ags!
–Before I jump in, I want to ask everyone’s thoughts, prayers, good juju, positive thoughts, whatever you can spare for the Texas coast from Victoria to Houston. We have a lot of prayer warriors there and we are thinking of y’all! —
I want you to imagine for a moment that you’re expecting a child. Whether you’ve lived through these emotions or not, you can probably imagine the thrill of each parent at the idea of a beautiful creation coming from your own genetic makeup. You imagine what they’ll look like, what kind of personality they’ll have, will they have a good sense of humor, will they excel in school, will they be a bookworm or a social butterfly. There’s a constant stream of “I wonder” in a dreamy sense and wishing and praying for all the best possible things for your child. It’s only natural, right? Now I want you to imagine that someone tells you there’s a chance your child will struggle. There’s a chance there will be a need for one or two medical operations, and possible cognitive and social development delays. Would that change how you feel about your child? Take a step back for a moment. Did you experience any kind of struggle in your life? If you are a parent, has your child struggled at all? I imagine that most of y’all would answer “yes” to some sort of struggle or hardship you’ve faced in your life. Did that struggle make you reevaluate your life in some way? Did it make you reconsider your decision to have children or consider your parents’ decision to have you? I sincerely hope that your answer to the last questions is a confident “NO”, because isn’t this just all part of life? In short – if you knew your child would struggle, would it make you decide to not have children? I realize there are times in life that are significantly more difficult than others, but it all becomes a part of our journeys, our paths, and a part of who we are.
I ask you these questions because there was a recent CBS news story regarding the “eradication” of Down syndrome in the Icelandic society. A large part of the reason for this is the encouragement of pregnant women to receive a screening (similar to the one I received) which is a blood test that provides a probability of your child having a chromosomal abnormality. At the time of this report, 100% of the women who received test results that indicated a likelihood of Down syndrome chose to terminate their pregnancies. This makes me so sad for Iceland.
I realize this is a polarizing topic, but regardless of your feelings my hope is to give my readers a more accurate depiction of Down syndrome. Are there hardships and struggles and milestones we’ve not yet reached? Absolutely yes. My purpose is not to sugarcoat our life. No life is always sunshine and rainbows. But my friends let me tell you, there are a lot of rainbows over here.
The pamphlets on Down syndrome while full of accurate statistics and sometimes scary figures on probabilities of heart defects, cognitive delays, cancer diagnoses, even Alzheimer’s and lifespans, don’t speak on any of the fun things. They don’t tell you that Down syndrome babies tend to be more snuggly because of their low muscle tone, or that they tend to be awesome sleepers, even in infancy. They don’t tell you that Down syndrome children tend to adapt more easily than most, that they tend to “go with the flow”. They don’t tell you that above all, your child is simply a child, and your role as a parent is the same—to raise your child to be kind, strong, smart and independent. They don’t tell you that the developmental milestones will become even more significant and special because you know how hard your child works to achieve them. They don’t tell you that your child will make you see the world in a whole new light, full of appreciation and discovery. They don’t tell you that your child will bring out kindness and joy in a world that often seems dark.
In Iceland’s defense, I wouldn’t have known what I was missing if I never experienced it. I feel sad that there are less than five children born with Down syndrome each year in the whole society. Imagine if some trait your family has was being eradicated – a great sense of humor or brown hair or a knack for science. That’s what makes you who you are. I recognize that these traits don’t also accompany learning delays or heart conditions, but what a time we live in! We have skilled surgeons who can almost always correct a heart condition and fabulous teachers and therapists fully capable of assisting those with learning or physical delays. As someone who’s seen the rainbow side of Down syndrome, I can tell you that any struggle Regan faces will not diminish her worth in this world.
Yes, a part of Regan’s genetic makeup shows that she has Down syndrome. But she also has a great smile with two teeny dimples just like her Daddy. She only laughs when something is really funny. She has slept through the night since her surgery with only a handful of exceptions. She babbles and talks ALL day. She blows raspberries when she’s done eating. She grabs for Walter’s ears whenever he gets close enough. She’s trying to sit and crawl but we’re still working on it! She has a dramatic pouty lip that can make you laugh out loud. She loves to roll and always sleeps on her tummy. She’s the best little buddy and happy to go anywhere with us – she’s been on four flights already and (knock on wood) has done awesome on each one, including a SIX HOUR DELAY on one flight. Ok, now I’m just bragging, but you get the picture.
I hope all the lives that Regan touches will have new found appreciation for that extra special chromosome she has, and I hope one day Iceland can experience for themselves, too.
As kids, we’re sort of blissfully unaware of the passing of time. In fact, we’re sort of blissfully unaware of a lot. It’s not until we are adults that we can look back and realize those things that played fundamental roles in our upbringings. Sometimes it’s a smell or sight that makes us flash back to those moments that shaped us. I had such a moment on our trip to Breckenridge a couple weeks ago.
My family almost exclusively vacationed in Colorado in the summers. While most of my friends were headed to the beach or camp, we headed north for some crisp (DRY!) mountain air. If we’re honest, the Houston humidity in the summer can get suffocating, and there is no better place for relief than the Rocky Mountains. If you know my dad well, you know how much he LOVES Colorado. We visited places all over the state and had only a few repeats at our favorite places.
One of those repeat places was and is Breckenridge. We’ve visited now in both the Winter and Summer months and you couldn’t find a more quaint and charming mountain town. The memories go far beyond the towns, though. As my sister reflected we agreed that in a sense, we were raised there. Vacations in the mountains happened every year, regardless of what was going on in the world around us. It was special time as a family, and I have no doubt that those trips shaped us into the adults we are today. We learned how to vacation as a group and survive in a multi-day car ride with your siblings (when really your my biggest concern was not peeing in my pants from laughing too hard). There were other lessons learned, too. BB and Dad were the vacation planners; Mom white-knuckled it through many mountain passes that were probably too narrow to be safely driven (on MOST of our trips, she infamously said, “Mike, YOU look at where you’re driving, I’ll look at the scenery); Dan usually finished multiple books on the road trips there and back and “survived” the cold Colorado hikes. As the youngest, I was exposed to all elements of the trip – hike up Pikes Peak with salami and cheese lunch (I thought that was SO COOL at the time), fishing trips with Dad, BB and Dan, learning what a hiker’s breakfast is and playing with the humming birds at Mt. Elbert Lodge, making a scary drive on Cinnamon Pass, touching the snow at the peak of the mountain in the middle of summer, and touching the Four Corners – Colorado, New Mexico, Arizona, and Utah on the way home. My memories are countless and they’re flooding back as I delve into those depths of my mind.
What my mom and dad maybe never realized [but then maybe they did and that was part of their plan on along] was that the memories are rarely the big and the grand. They’re the laughing fits because mom unintentionally made me buy a tracksuit (hello 90s) at Target for vacation that was from the MATERNITY section. They’re the flashbacks to train rides where mom gave us each a disposal camera and every.single.picture I took was of the river. Trust me when I say all river rapids look the same. I have 36 pictures to prove it. They’re the putting pennies on the train tracks and waiting for the train to come and flatten them. They’re ice skating on a natural pond, not realizing there’s no Zamboni in this kind of ice skating. They’re the 24-hour road trip home with your sister and Gema and Pawpaw full of memories you’ll never replace.
I hope Mitch and I can instill the same warm feelings in our kids about family vacations. We continued that tradition a couple weeks ago with Regan. She doesn’t know it yet, but she’s already crossed a lot off her bucket list. She hiked like a champ, carried Daddy’s fly fishing rod for him for one of those hikes, rode a gondola style ski lift to one of the peaks at Breckenridge. She’s been on four flights, one of which was delayed six hours; you’d never have known by looking at her at 11PM stuck on the tarmac at the Philly airport. Soon enough she’ll be creating memories of her own that will hopefully last her a lifetime. Something about those mountains reminds of our proximity to God’s glory, and somehow I think Regan has a special privilege in that glory that I may never fully understand myself.
We also took some new family portraits! We didn’t have a chance to take newborn pictures when Regan was born (for obvious reasons…things were a little hectic). I finally got around to scheduling some pictures of our little family – enjoy!
As most of you reading this probably know, the current political climate in this country is messy at best. With the repeal of Obamacare failing, I thought it may be interesting to share how my perspective on public funding and healthcare has shifted.
It’s funny how, until you’re faced with the reality of the need for things like public healthcare / public funding, it’s so easy to dismiss it. I don’t blame anyone who feels this way; I was the same way prior to having Regan. I’ve been blessed in my life to not only always have insurance, but also have insurance with relatively low (or no) deductible, making any decision relative to my health easy. My family and I have also worked hard to have such luxuries. It’s not as if it came without cost or employment, but it has been a blessing nonetheless. This became especially important once I became pregnant with Regan. In the blink of an eye, I went from having a handful of few standard doctor appointments to going to doctors across the state of Pennsylvania a minimum of once a week. I don’t even want to know what it would have cost us out of pocket without the gift of excellent health insurance. These doctors’ visits were not only medically necessary, but gave me peace of mind every time I was able to see that sweet little nugget growing and knowing that her heart condition was being closely monitored. I never imagined I would value the healthcare industry as much as I have in the past year.
Once Regan arrived, my appreciation grew exponentially. Regan is now covered under both our private insurance and Medicaid. This allows us to see doctors we choose and Medicaid covers additional copays and expenses not covered by our primary insurance. I consider myself to be fiscally conservative/politically moderate, and prior to these experiences I wasn’t the biggest fan of the new healthcare act. I’m certainly not saying it’s perfect now, but Regan has once again taught me a new lesson in life.
Under certain versions of the proposed healthcare bill (I’m pretty sure it’s changed a zillion times now), Medicaid would have lifetime caps. This means that Regan would be limited in how much funding she received from Medicaid over the course of her lifetime. Don’t get me wrong, I understand the need for financial responsibility in this country, but I’m just thinking maybe there should be consideration for those who may not be able to care for themselves. Regan’s need for healthcare will not change over the course of her life. In fact, Down syndrome people have higher likelihoods of a LOT of things (leukemia, Alzheimer’s, heart defects, autism diagnoses, vision problems, ENT issues, etc.). It was easy for me to have a different (somewhat selfish) perspective on healthcare prior to Regan opening my eyes about the world outside of my life, free of major health complications. My compassion has grown tenfold for those who need help caring for themselves. There may come a day when Mitch and I aren’t around, that Regan will need to be sure that she has adequate financing and health coverage to take care of herself. That forces me to realize she’s not the only person in this country facing that possibility. So my advocacy for her and others like her starts now.
I’ve taken steps to write and call my local senators to implore them to keep folks like Regan in mind when they vote for our national healthcare laws. I hope that our story gives them new perspective in the same way that having Regan gave me new compassion.
She’s changing the world, y’all! One perspective at a time.
I was reading another blog recently and there was a small portion of it in which the writer (a mom who has experienced her own form of suffering) discusses faith and perception of others. I completely identified with her discussion because I’ve wondered them myself. I wonder if people perceive my faith as a sort of naïve way of viewing life. Quite honestly, I could understand why someone might think that. I could see why someone would look at me and think ‘she has no idea what she’s in for in the future’ or ‘there are a lot of struggles ahead and she’s being ignorant.’ It wouldn’t be an unreasonable perception, but the truth is, no one can imagine this life until they’re in it. When I was in the depths of grief, the one hope I had was based in faith.
That faith has carried us to today. Regan had her four month post-op appointment with our Cardiologist and got a five star, A+, never-looked-better report. In the depths of despair, I never could have imagined how happy and healthy Regan would be. That despair has made me appreciate the everyday, ordinary love because I’ve faced the harsh reality that those ordinary days are precious. Every day with her is a gift. So what do our ordinary days look like these days?
Regan generally sleeps through the night (we’ve overcome the 3AM wakeup calls! *knocks on wood*). She wakes up around 6 AM, happy as a clam and eats her first bottle. She watches the morning news with me and usually takes a morning nap. By 9 or 10AM she’s ready for breakfast, her first baby food meal of the day. She’ll work with me and play for another hour or so, then she takes a bottle chaser followed by a little cat nap. Afternoons are therapy work, more eating and play time, then pretty soon Daddy gets home! Baby food dinner around 5 with a couple more big bottles and she’s snoozing by 8:30 every night.
Regan comes on walks with me, runs errands with me, “helps” me work (but really she’s so cute she’s more of a distraction than anything). She’s strong and happy and the thought crosses my mind daily that I can’t imagine this world without her. Regan is in therapy sessions weekly where we work on building her strength in all areas. She’s completed and ACED her first milestone goal of complete head control. Her next milestone is sitting independently and she’s working hard to get there! Regan (and I) have to practice her learning bracing her upper body by holding her arms against her knees or on the ground, which will allow her to sit independently. I knew Regan would have low muscle tone before she was even born, but I wasn’t sure what to expect. I read descriptions that included words like “floppy”, similar to a “wet noodle” and that Down syndrome babies will “melt” into your arms. The best way I can describe it to you is by comparing to a typical baby. Where a typical baby will naturally stiffen her legs to stand when you hold her up, Regan will stiffen hers for a brief second before falling into your lap. When I hold her on my hip, I still need to brace her upper body with my hand, whereas a typical baby would hold herself up. The secret benefits of this hypotonia is that Regan is EXTRA snuggly, loves to be held, and fits perfectly in your arms.
There are new things I’m learning every day, and maybe sometimes that means I’m ignorant today, but if there’s one thing Regan has taught me it’s to appreciate and celebrate all the minutes with her.