Welcome

I want to start this week with a profound “thank you” and hug for all the supportive and lovely comments I received on my last post. I think it’s worth noting that my faith in humanity is/was by no means shaken by our experience. The overwhelming majority of our experiences have been positive, uplifting, and even surprising (in a good way!) I still see it as my role to share our story, and sometimes that includes a raw view of life with a child with Down syndrome. Just days after our dental experience, we got a much-anticipated change of weather!

Spring has sprung and we’re officially in the days of warm, sunny weather. Regan and I have been running around like little chickens, following up and keeping tabs on all her therapies and such.  We had an appointment at CHOP (Children’s Hospital of Philadelphia) this week with their Trisomy 21 group. It’s an appointment that essentially serves as a “double-check” on Regan (in other words, they don’t serve as her primary caregivers, but their familiarity with Down syndrome gives them a unique perspective for her care). I’ll get into how that appointment went, but it got me thinking back to the days before we held Regan in our arms, and the days in the beginning that seem to all be a blur.

I’ve spoken with other moms and discussed our diagnosis stories, and there’s one thing that’s stuck with me through all those conversations. Diagnosis conversations usually boil down to one question – did you have a prenatal or birth diagnosis? We share our experiences, the good, the bad, and the ugly, and we ponder how we would have handled another diagnosis scenario. For example, we received a prenatal diagnosis and so I am left wondering how I would have handled a birth diagnosis. In all these conversations, every single mom has said, in one way or another, ‘I’m so glad I received our diagnosis when we did.’ Prenatal diagnosis moms tend to feel [we] have more time to process the information, do our fair amount of research and reach a place of acceptance and happiness before birth. Birth diagnosis moms tend to feel that the birth diagnosis allowed them to enjoy a relatively stress-free pregnancy and tend to feel they would have stressed in all the months leading up to the birth of their child. We all process the same emotions, but the timing of our diagnosis has a profound impact on each of us. I’ve always found it so divine that, in the gift of hindsight, we each appreciate the timing of our news.

Throughout this process, I’ve felt God’s hand in information delivery. I believe this to be true for all families who walk in our shoes. We receive information as it comes, and the way it comes has a grace that’s given to us, “the lucky few.” Even as we move through Regan’s life, I continue to learn and grow with her. It’s a journey that seemed so overwhelming in the beginning, but I’m learning to appreciate each step of the way.

Regan’s appointment at CHOP went very well! Everyone (including me) seems very pleased with her progress, and we’ll continue to work on her areas of improvement. She is four-point crawling now! That’s a milestone I wasn’t sure we’d really “achieve”, since she seemed perfectly happy with her little belly scoot. She still needs some help getting into standing, though I’ve found her standing on her own a handful of times. Regan is starting to self-feed with small finger foods, and still eats like a champ. The CHOP pediatrician confirmed my fear that we will have a hard time weaning her off the bottle (oops), but we’re working on it! We are both loving the warmer temperatures, and Regan has learned to love the swing and slides at the park.

Happy Spring and happy sunny days to all of our friends!

I’ve been sitting staring at a blank Word document for a while now, struggling to find the words to begin this post. I tried to reflect on times in my life where my words and actions were powerful, even when I didn’t realize it. I suppose in many ways we’ve been blessed to make it 16 months before we had a moment like we experienced this week.

At my last dental appointment, I asked the appropriate age for bringing children in for their first dental exams. The dentist advised me to start brining Regan in to my appointments to ease the fear of the dental chair and those scrapie, grindy tools they use. That sounded like a good idea to me, so I brought Regan with me to my cleaning this week. I rolled Regan in her stroller into the exam room and explained why I brought her. I also shared that she only has approximately ½ tooth (total), and also that she has Down syndrome, so her delayed teeth are not concerning to me nor her pediatrician.

[As an aside, I typically like to share that Regan has Down syndrome, even though it might be visually obvious to some. I feel like me sharing the words of her diagnosis out loud should help to put others at ease by showing my comfort.]

The hygienist started cleaning my teeth when she said, “So… do they know how that happened?”

My mind swirled with the insinuation of her words. I initially thought she might mean ‘do they know why she doesn’t have teeth yet?’, which would have been an appropriate question. I hesitantly responded, “Do you mean the fact that she has Down syndrome?” “Yea,” she said, without reluctance.

I was so shocked that I didn’t even know how to answer. In hindsight, I can think of a million retorts to put her in her place, but at the time all I could muster was, “It’s not genetic, it just happens at random.” I should have said ‘it only happens to the very lucky ones!’ but shock got the best of me, not to mention the inability to talk while there are two hands and dental tools in your mouth.

By the way – why do dentists and dental hygienists even try to have a conversation with you while they’re working?! It’s not like I’m there for happy hour.

In an ideal world, this would’ve been the worst of the encounter, but it wasn’t. The dentist came in after my cleaning to examine Regan and me. His first reaction to Regan was that “[he] isn’t concerned because development is delayed in… you know…” I had to finish his sentence by saying “…in children with Down syndrome?” And while he was examining my teeth, he was speaking to Regan saying something about ‘cleaning Mommy’s teeth’, turned to me and said, “does she know who you are?”

“YES, SHE KNOWS!”

Ok –so that was a long explanation to show that some people haven’t reached the acceptance level of people with different abilities. But the lesson here is this – PRESUME COMPETENCE.

As a parent of a child with special needs, it is easier if there is a presumption of competence and then for me to explain her differing abilities. It’s disheartening to hear things like “does she know who you are?” Not only is it completely ignorant, it’s irritating to have to explain that she has an understanding level that’s only slightly delayed compared to her typical peers. If you’re unsure what to say when someone tells you they have a child/friend/sibling with different abilities, try responding as if they hadn’t said anything at all. Treat them as if you had no idea they may not have the same abilities as their typical peers. Typically, the person is telling you the difference only to put you at ease.

If you see a baby with a difference, try saying, “what a beautiful baby!” “he/she looks to be doing so well!” or simply, “congratulations!” Asking how the difference happened is not only a ridiculous question (why does it matter how the difference occurred?), but also puts the parent in an awkward place of trying to explain genetics to an already ignorant person.

If you see a child/young adult/adult with a difference, try saying, “hi! Nice to meet you!” You can ask them their name or grade or anything else that’s age-appropriate for anything you’d ask their typical peers. Again, it is easier as a parent to explain any differences once you PRESUME COMPETENCE.

I am happy that we’ve made it this long without having such an encounter, but I know they’ll happen throughout Regan’s life. It’s another situation for which I need to arm myself and have responses ready to even the most ludicrous questions and statements. Thank y’all for always having an open heart while we share our story.  I haven’t always understood this world, and it’s my hope to share our experiences as a way of spreading understanding and love.

A Lesson in Humility

Of all the lessons we’ve learned so far on this journey, maybe the most important (and at times the hardest) is learning humility while raising a child. Of our entire lives, it can feel like we are under the most scrutiny while we raise our children. That’s not to say that we ARE under the most scrutiny, but it can feel like that a lot. Maybe it’s a projection of our own feelings as parents that we assume everyone around us is watching, judging our every move.

It especially feels this way while raising a child with special needs. The number of appointments and eyes on our children can be overwhelming. We answer questions that parents of typical children never hear, and probably never even wonder themselves. The truth is all of these appointments and questions lead to bettering our children, and those asking the questions have tools that can help our children succeed. But the path from point A to B can feel like a test as a parent.

This week we had Regan’s annual evaluation by the Early Intervention team. Early Intervention is a state funded program that provides therapy services for children who qualify. Some children qualify after “falling behind” on the development chart, and some qualify based on diagnosis (<- the case with Regan). Every year, the team comes out and administers little “tests” for Regan and dozens of questions for me to assess where she is developmentally. It also helps determines which services she should be getting based on her development path. Regan participates in what she probably assumes is just play time; she stood independently with no assistance right after I got done saying “she needs assistance getting into standing.” I’m sure that won’t be the last time she surprises me. Regan flies through the test with a smile on her face, and then come the questions.

I’m asked everything from “describe her typical day – what time does she wake up, when does she eat, what does she eat…? Has she been sick this year?” to “how long can she play independently? Does she cry when you leave the room? Does she nod yes or shake her head no?” It feels exhausting, and at the end of the nearly two-hour session, I think I’m more spent than even Regan (who definitely works harder than me at these things). The exhaustion feels emotional. My mind is spinning with answers and reflecting on questions. It can feel like a scrutiny of our life, and there are questions I answer where I know the indication is she is behind her typical peers on a developmental chart. At the end of the “test”, the assessment is reviewed with me, and the administrators are careful with their words as they tell me where Regan stands (pun intended) compared to her typical peers. I steel myself for moments like this; it’s a mentality that Regan has taught me. You see, it can be hard to listen to people who observe your child for an hour to make an assessment on how your child is developing. It would be easy to be defensive and protective over our angel, but that would not serve Regan. It’s not my job to be defensive in these moments; it’s my job to receive their evaluation and apply their words and critiques as I see fit. It’s my job to understand that these moments are meant to build Regan up, not tear her down, and their words (while sometimes hard to receive) give me an invaluable third-party perspective on Regan’s successes and areas of improvement.

So how did she do? She scored within the typical range on Cognitive Skills and Social/Emotional Skills (go girl!). She is behind on Communication and Physical development. This comes as no surprise since this is typical and (to a certain extent) to be expected based on her diagnosis. My heart soars when they tell me her emotional skill is excellent, and cognitively she is very attentive. It stings when they tell me she is behind in other areas, though I obviously am acutely aware of where she falls and areas of improvement. Regan has taught me to be humble in these moments and to listen carefully so that I can be the best mom for her. I refuse to do her any disservice by being protective; I see these moments as building blocks in Regan’s life. I’ll face them continuously, and I think it gets a little easier every time. It’s another lesson Regan has taught me –be humble in the moments it’s the hardest. It helps Regan grow and helps me grow as her mother.

P.S. We are SO excited that there is finally warmer weather in PA! Celebrate Spring!

One of the most common questions I get asked might surprise you. It’s not usually the hows or the whys; most people ask simply – what’s it like? Specifically, most ask what therapy is like for a baby. But I thought I’d take this question a little further into simply ‘what’s it like to have a baby with Down syndrome?’ The short answer is, it’s not really “like” anything to have a baby with Down syndrome. For the most part, it’s just like having a typical baby. But then I have nothing to compare, so maybe it’s totally different and this is just my version of normal.

My initial reaction is to say it’s the same, but with more appointments. It’s true that people with Down syndrome (children in particular) are at higher risk for autoimmune diseases, leukemia, hearing loss, ENT issues, hypothyroidism, and their immune systems are typically more vulnerable to infection. As a proactive measure, we’ve had more bloodwork and testing than typical babies. Regan has had vision and hearing screenings, bloodwork for heart failure, thyroid checks, and a renal ultrasound to check her kidneys, to name a few. It can be daunting at times, but each test feels like something else we’re simply checking, and I find there to be power in knowledge and understanding.

As I mentioned, one of the most common questions I get asked is, “what does a baby actually DO in therapy?” I can understand this question; a baby in physical therapy almost seems like a paradox. I would describe it more as “structured playtime”. Where typical babies glide through developmental milestones with relative ease, kids with Down syndrome (and other conditions that affect physical and cognitive development!) take their time with development, and research has shown that therapy can help improve those timelines. Regan gets Physical and Occupational Therapy once a week.  Physical therapy focuses on her gross motor skills – think rolling over, crawling, sitting, standing, walking. Occupational Therapy focuses on fine motor skills – think using your pointer and thumb “pincher” grasp to pick up small objects, self-feeding, turning book pages, clapping, etc. During therapy, the therapist gives Regan physical cues to help her learn how to “turn on” the muscles she needs to use to do these things. We guide her movements by triggering muscle groups. For example, we might support her mid-section/tummy while she is in hands and knees to help her learn how to crawl. Or we might hold her hand such that she can only use her pointer and thumb pincher grasp to pick up an object. There are times she dislikes therapy, but the strides Regan has made with the help of therapy are incredible.

Within two months, Regan went from strictly belly crawling to transitioning easily in and out of a seated position. She’s can easily get into a four-point crawl position, though she still prefers her little scoot method of moving. Regan can pull into kneeling on her own and is starting to get into a bear crawl position on hands and feet. One of her Occupational therapists told me this week she rarely sees this much progress in such a short time. I’m beaming with pride!

Regan also had a cardiology follow up this week. If you’ve been following, Regan was still on one medication to control her heart rate after some episodes in the NICU where her heart rate increased rapidly. Well my friends, we have out-grown that medication and as of yesterday, REGAN IS OFF ALL MEDICATIONS!!! Did you hear me? WE ARE OFF ALL MEDICATION! Her cardiologist said she’s (and this is a direct quote), “never seen an AV canal repair as good as hers.” We are in the presence of a walking miracle! [Ok, maybe not walking yet, but we’ll get there!]

This week also featured World Down syndrome Day, and I got so many messages, texts, and pictures of y’all rocking our crazy socks! Y’all are changing the world for the better! There were days that seemed endless in the beginning, but I can tell you this week has my heart bursting with pride. Thank y’all for always showing so much love for Regan and all her buddies. Happy WDSD!

 

There’s a giant pinball-type machine at the main entrance of CHOP that dings and sings every time its button is pushed. You can imagine how often it gets pushed in a hospital full of kids, siblings and grown kids, so this clingy clangy song echoes through the hospital halls about once every ten seconds. The sound of the pinball falling through the machine gives me flashbacks to other times we walked through these halls. As soon as I step foot on the terrazzo floor, I feel a wave of emotions surge through me as I recall the days of rushing up to the NICU for the overnight update. The smell of purell gives me anxiety as I religiously sanitize walking into the patient room. Today though, we celebrate.

Regan and I are back at the hospital for ear tube surgery. We just said our goodbyes five minutes ago, and the post op waiting room attendant just told us they’ve already requested a PACU (post-anesthesia care unit) bed for her. This feels like a breeze compared to this day last year, and yet the emotions are still so raw. I still had to say goodbye to my babe as I entrusted her care to the hands of an anesthesiologist and surgeon. I don’t think this goodbye feeling ever gets easier. But today, we celebrate!

We celebrate a year gone by with minimal illness. We celebrate the countless smiles and milestone celebrations we’ve gotten in the past twelve months since her tiny heart was so seamlessly repaired. We are offering our prayers for the families of Regan’s buddies who’ve gained their angel wings after long-fought battles with similar conditions.

It’s easy to forget the hard days when these days feel so good. If you’re a new reader around here, you may not know that my grandma (we call her Mah –pronounce “maw”) passed away a few years ago. I’ve written in previous posts that she is my spiritual mentor, the matriarch of my mom’s family, and serves at least part time as Regan’s guardian angel. She probably splits her time among all her children and grandchildren, which is more than a full-time job since I have thirty first cousins alone. Mah has come to me in my dreams three times since she passed away. Ironically, she doesn’t come at times when it feels like I need her the most. She comes to me at times when I need to be reminded that she’s there watching over us. She visited me last night in my dream.

The plot of these dreams is usually insignificant, but I can feel her telling me “I’m still here, darlin’, watchin over everything.” I wasn’t exceptionally nervous for this ear tube surgery; I think going through open heart surgery will do that to you. But every operation should be taken seriously, so I was a little anxious last night. Mah didn’t cross my mind last night before I fell asleep, which is why I know she came to me to remind me that she’s bending the Blessed Mother’s ear about Regan.

So today we celebrate a year since open heart surgery, a year of health, and we cheers to another day seeking our mission on earth. I hope everyone has some sort of reminder from your guardian angel that he or she is winking down at you and reminding you to celebrate the good days.

Happy Heartiversary, Regan!

((The last picture on this page is within an hour post-op. We have one happy girl!))

I’ve mentioned in previous posts that I was a competitive swimmer basically my entire adolescent life. [By the way, I don’t really know what defines a “competitive” anything, but I swam in a lot of swim meets, so I figure I qualify.] My mom ran a house of independence, which meant that if you wanted to do something, you were responsible. This included everything from doctor appointments to birthday party RSVPs to (you guessed it), swimming. For most of my swimming life, I didn’t have a driver’s license, so I was responsible for coordinating swim practice times, choosing which swim meets to attend, and which events to swim. I also didn’t have much money at these ages, so I had to ask mom or dad to sign me up for said events. This was pre-internet-signups, so every event was hand selected and hand written, mailed in with a check to the host of the swim meet. The rest of the transaction was in the fate of the mail handlers and the volunteer moms.

For one particular swim meet, my dad was the one to handwrite my sign up which was nothing unusual at the time. What you should know about my dad is that he is left-handed and writes in engineering ALL CAPS. I suppose there was some trouble deciphering his handwriting, because as they announced the names at my first event I heard them calling “MELON!” “MELON BARINGER?” I politely responded and corrected them –“my name is actually MEGAN.” The volunteer responded “oh, well it’s MELON here on the heat sheet.” No problem, I went on and swam. At my next event, I was sure they would have corrected my name, but again they called “MELON, MELON TO LANE 2!” I didn’t bother correcting the announcer, but did tell the timekeepers at my lane, “my name is actually MEGAN”, so they wouldn’t think my parents were crazy for naming me Melon. This pattern continued the entire weekend, and eventually I just started responding, “yes, Melon is here! Going to Lane 3..”

I’ve often thought about how Regan will handle situations like this in her life. There will inevitably be awkward moments for her, or questions to which she doesn’t know how to respond. One of my many goals for her is to have the courage and independence to handle those situations. My mom raised us to be responsible and self-aware, and I think it’s led to success, happiness and satisfaction in my life. One of the struggles for me is that I don’t completely understand how Regan’s brain works. Even now, I catch myself wondering – is it her or is it me?

I told y’all that we are constantly working on Regan’s development. The hard part here is I don’t know where I am failing and/or where she simply needs a little extra time to learn. It’s a constant battle between whether I’m doing enough to give her the tools she needs to succeed or if I should loosen the reigns and let her learn on her own. I’m not sure this mental battle will ever end, and again I suppose that’s just part of being a mom: navigating your role as a guide while also allowing your children to learn independence and strength.

On that note, Regan is thriving. She is indeed a little behind on the typical development chart, but she continues to demonstrate her ability to learn. She’s working on pulling up to a kneel / stand –we still have quite a bit of work to do but she is getting stronger every day. She has a knack for reading emotions and continues to talk from sun up to sun down (not exaggerating here). She can give kisses, wave hi and bye, give high fives, and melt your heart with just one little smile.

As for a tooth update –still no teeth. But we’ll take those gummy smiles all day long.