Bless This Mess…But Also Bless This Rest

Yes, this is a photo of the center console in my van. I’m sure somewhere there is a “Blogging for Dummies” handbook that says, “don’t start a post with an ugly picture,” but it’s a good thing I’ve never been one to closely follow the rules. Typically I wouldn’t attach enough significance to the screen in my van to warrant snapping a picture, but last week when I was parked in the hospital garage by 10:05 for a 10:15 therapy session, you better believe I documented the feat. You see, Landry and I had just returned to her regular therapy schedule following a two-week break for the holidays. I hate being late and feeling rushed and, before our break, I found myself feeling much more frazzled than usual and just a bit like my head wasn’t in the game so to be at our first session of 2022 in time to unload the car and take our time getting to clinic felt like the fresh start I intended for when taking time off.

A typical week for us, minus any doctor’s appointments, is to do five sessions with six different therapists (co-treating is a beautiful thing). In nearly three years this was our first intentionally-scheduled long pause. I have cancelled sessions here or there for various reasons, but until now, our only other extended breaks in therapy have been for hospitalizations, which hardly constitute a break. I must say, if there is a group of people just as flexible as, if not more than, the parents of disabled children, it is their therapists. As constantly as our schedules are disrupted for the unexpected so are theirs because, chances are, on the day there’s a kink thrown into our plans, those plans included therapy.

There are 168 hours in a week so spending six of them in therapy doesn’t seem like much, but the schedule can be overwhelming. When the driving time for in-clinic sessions or clean-up time for in-home sessions is factored in, it adds up. The mental toll is a whole other story and I’m not above saying that I’m not always up for it. Prior to taking our holiday hiatus I felt myself getting more tired than usual. Not just physically tired, but that bone-deep mental exhaustion that only comes with trying to maintain a busy schedule or keep up with endless demands for too long. I was irritable and becoming frustrated easily. I was chronically running late for sessions, which I hate. I was forgetting accessories and equipment that make therapy more beneficial. Quite frankly, I felt a bit like I had a one-way ticket for the Hot Mess Express. Destination: Irreversible Burnout.  Not something I like to admit, but I wouldn’t be keeping it real if I left it out. So do you know what I did instead of pushing through and making things worse?

I stopped. Not for good, but for a good two weeks. I didn’t even try to juggle our therapy schedule with having Chandler home from school. We took a long break. We rested and we enjoyed each other without the added stress.

The best part? The world did not end.

One of my favorite reminders is, “you can do anything, but you cannot do everything.” And, in my ripe old age of 34 (please note my sarcasm), I’m learning to add: even if I could do everything, it’s ok if I don’t WANT to do everything. As I was preparing to write this, I looked up synonyms for the word “break.” Many on the list I knew, but one that surprised me was “breathing space.” We were not meant to burn the candle at both ends until there’s nothing left. A flame will not survive when deprived of oxygen. We were meant to create space for breath, to come up for air. Breathing space.

None of us are short on demands; you don’t need me to tell you that. There are things that we can put down and there are things we can’t. I mean, these people in my house expect three meals a day and some clean clothes from me; I should probably continue feeding and clothing them. It’s not feasible to drop everything for two weeks at a time, but I do think it’s possible to take short breaks from some of our responsibilities without things spiraling out of control. It sounds counterproductive, but sometimes the best thing we can do for ourselves is to do nothing at all. And when it’s impossible to do nothing at all, let’s settle for less, even if just for a brief time.

We are much more valuable to ourselves and our families when we are as refreshed as possible. I wonder how different this year could be if we let it be the year we do less of what keeps us unnecessarily stressed and more of what keeps our cups full? What if this is the year we let less, in general, become more? More time, more patience, more love, more peace, more of all the things that matter the MOST. I love the sound of it, but I know it’s easier said than done. I am thankful that I took a prolonged rest from our therapy schedule because it helped me gain a much-needed refreshment on the importance of taking a breather.

If you haven’t figured it out yet, I chose the photo that I did to begin this piece because it signifies the renewal that comes only from knowing when we need a break and taking time to rest. It’s also not lost on me that the title of the song playing is, “Heaven Help Me,” because there is only one way through this crazy life and it is certainly not on my own.

I hear often the phrase “Bless This Mess.” But let’s make this the year we remind each other to add, “…But also bless this rest.”

xo – Lindsay

Permission Granted: Just Don’t.

Chandler was 16 months old at her second Christmas, a new walker and into everything, but not yet able to be reasoned with. That year we got a small tree that we could have up off the floor to avoid keeping her out of it all season. 

I vividly remember telling this to an older, well-meaning woman who said in return, “Oh, but that’s part of the fun!” She meant keeping a toddler out of the tree and, to this day, I question what other terrible-sounding things this woman does for fun. As an impressionable first-time mom, though, I remember second guessing myself and feeling guilt. Did I just cheat my one-year-old out of the fun of redecorating the tree anytime she felt like it? 

I am now close to seven years into this mom thing; not a veteran, by any means, but I’ve learned a few things. I am almost three years into parenting a disabled child, a chunk of time in which all the expectations and preconceived picture-perfect moments of motherhood I formed in my mind years ago have been upended, shaken around and maybe even stomped on a little bit, then handed back to me in the form of something completely different but just as special as what I envisioned for myself. Still not a veteran, by any means, but I’ve learned even more than a few things through that.

It seems so trivial now, but do you know what I wish I could go back and tell that new mom who felt guilty over a small tree? I wish I could give her a hug and then scream a big, fat, “NO!” in her ear. NO, you’re not cheating anyone out of fun. You’re giving your family a mom who could take one thing off her plate in order to be a bit more relaxed and joyful in that season. 

We went back to a small tree this year. Landry is close to three years old, but is developmentally and cognitively in the six-to-nine-month range. She started crawling this fall and is unable to be reasoned with, similar to an above-mentioned toddler. The difference is that I have no idea when we will move on from this stage. I don’t say that to be demeaning in any way; it is a fact. It’s simply where we’re at right now.

At that rate, who knows when we will have a big tree on the floor again? We might never. Not entirely because of Landry but maybe also because *gasp* I LIKE our small tree! I also happen to like the mom I am because I am not constantly fighting a child out of said tree. I wish I could go back to that original conversation and answer how I would answer today: “Good for you for thinking that’s fun, but I truly cannot think of anything more miserable or annoying.” 

Your version of my small tree story might be something else. It might be a craft or activity or one more set of plans. It could be anything that you feel obligated to execute just for the sake of tradition. But what if the very thought of that thing makes you feel drained? What if doing that thing, for the sake of tradition, only comes at the expense of your sanity and joy? (I feel this way about Elf on the Shelf, by the way.) It’s fine to say no, regardless of what anyone else thinks. You don’t have to do that thing that doesn’t fulfill you just because someone else says it’s fun. It’s also fine if that’s not limited to one thing; it’s ok to not do multiple things that you just simply don’t want to or can’t do!

We don’t owe our kids a perfect holiday season. There’s no such thing and we could run ourselves ragged striving for such an unattainable and stressful idea. We owe them a holiday season that is perfect for our individual situation. It will look different for everyone.

We don’t owe them every seamlessly-executed tradition under the sun, dreamed up who-knows-when by who-knows-who (someone with more energy than me, that’s for sure!). We owe our kids a mom that doesn’t feel obligated to do it all. But I should also add: maybe it brings you joy to actually do all the things; I think that’s great! It’s just that I am now able to rest comfortably in the fact that I will never be you and I know my kids will be fine too.

My family’s Christmas traditions will not be the same as yours. Your family’s festivities will look differently than the next family’s. Our kids will go to school and talk about what happens at their house and find out that it’s done completely differently at their friends’ houses, but I’m realizing that that will have far less of an effect on them than I think it does. Some will do more; some will do less. Some will spend more; some will spend less. Our kids will all be fine.

I hope that, if you have an equivalent to my small tree in the coming week, you can be comfortable with putting it down, whatever that thing may be for you. Be comfortable with putting to rest the self-inflicted pressure to create perfectly-curated Christmas memories for your family. The next seven days do not have to align with society’s or social media’s ideas of perfection in order to be perfect for your family. They can be busy, they can be lazy, they can be any darn way that works for you.

All that to say, I hope you consider this your permission. Permission to not do the things that don’t bring you joy. Put down the expectations and enjoy, guilt free. Permission granted: just don’t. The kids will all be fine, I promise.

xo – Lindsay

Giving Tuesday

TOMORROW! Giving Tuesday is tomorrow!

At a time when there are so many worthy and important causes asking for your help, we would be honored and so grateful if you considered the CHAMP1 Research Foundation. We are on the cusp of some very exciting and potentially life-changing developments for our kids. 100% of your donation goes directly to research, which includes but is not limited to: gene therapy, a drug repurposing project (using a well-known drug for a purpose other than that which it was originally intended) , and the hiring of a doctor to work full-time on CHAMP1 at The Children’s Hospital of Philadelphia. Unfortunately, funding is the biggest obstacle we face.

Please know that support does not have to be financial. If you are unable to give, know that sharing this post or a social media post and telling people about Landry and other kids whose lives are so greatly-affected by CHAMP1 are just as meaningful shows of support as any monetary contribution.

I have been and continue to be in awe and humbled by the generosity we’ve been shown by our community both near and far. No one ever expects to have their child diagnosed with a rare disease and certainly not one that affects every aspect of life so greatly, but one of the biggest blessings I’ve experienced in all of it has been to witness love and graciousness that surround us. Landry is a lucky little girl, as are we to be her parents, and we are so, so thankful to share this journey with all of you. 💜

The Gift of Community

As we kick off this Thanksgiving week, it seems only natural to spend extra time reflecting on all we have to be grateful for. When I look around my house, which currently looks like a tornado blew through, it’s not hard to see how much we have. I also find that, as I get older and further into raising my own kids, it takes much less to make me truly happy and content (so I’m kind of wondering where all this clutter still comes from, honestly). I have wants, of course; we all do. But at the end of the day, my needs are met and so much more.

Two years ago we spent the long holiday weekend in the hospital with Landry. She had just been sedated for a brain MRI the day before and had a hard time coming out of anesthesia so we spent three days on oxygen in Peoria. Last year we were preparing to have her tonsils and adenoids removed less than a week after Thanksgiving. What should have been a fairly quick recovery turned into nearly a three week stay from which we were barely discharged in time to spend Christmas together. Needless to say, the joy of having my family together, safe, and healthy this year is more than I could ask for and a blessing that is not lost on me.

Something else that this year has taught me to be thankful for is the gift of community. I am blessed to have grown up and currently live in the same small, caring town. I have plenty of helpful and supportive family close by as well as a very loving and encouraging church family. I have also been especially grateful in recent years for the opportunity to grow some of my very closest friendships and watching Chandler begin to build her own close circle of friends has been equally as special. They say it takes a village and they weren’t kidding. I hope that as you’re reading this you are able to think of many instances that you experience the blessing of community in your own life as well. It really is a gift to be treasured as no one knows us better or loves us more than “our people.”

I have another community too. One that I never could have dreamed I would someday join and it’s only because of some pretty wild circumstances that I’m here. I am a part of the CHAMP1 community and, on a more broad scale, the rare disease community. Rare disease. Sometimes that still feels strange to say. I assume that no one has a baby and thinks to themselves, “I sure hope we get a rare genetic diagnosis so I can join a Facebook group and make some of the most meaningful friendships I’ve ever had.” I guess I can only speak for myself, but that thought never crossed my mind. Regardless of whether or not I asked for it though, it’s exactly what I got. I didn’t just receive Landry’s diagnosis last year; I got Landry’s diagnosis and an invitation into one of the most warm, welcoming, and understanding communities I have ever been a part of. I was accepted into a community of parents and caregivers that fight just as hard for their kids as we do for Landry and who can relate to every single detail of raising rare children like ours.

Over the last couple of weeks I have collected statements from a handful of my fellow CHAMP1 moms about why they are thankful for the privilege of raising CHAMP1ONs. While our community is small and there is an even smaller representation included here, I hope these small glimpses show you that being big is not a requirement for being powerful. Large numbers are not a guaranteed tool for effectiveness nor does the size of a group directly correlate to its strength. Tiny but mighty is a thing and our kids and our community are active proof….

“I am thankful for our CHAMP, Lejla, because she teaches me to be a better mom. She has a heart of gold and loves everyone. She loves her family and friends and always wants everyone to participate. She reminds us to find joy in the little things in life. Whether it is just sitting on the couch together as a family or playing hide and seek as a family she is just as happy for both. She is always your biggest fan. She will be right behind you clapping you on no matter the task you are doing. She makes all of our hearts grow bigger each day.” – Jordan, Georgia

“I’m thankful for my Calum as he’s molded me into a mum I never imagined I’d ever be. As the years pass, his determination in the world has shown me that no matter how tough life can get, if he can get up and get on with life then we really have nothing to complain about! He is a true CHAMP1ON 💜” – Stacey, Scotland (Calum just celebrated his 15th birthday yesterday!)

“I’m thankful for my CHAMP1ON JJ and his wonderfully uniquely-made DNA because he ignites a fierceness in my heart that wasn’t there before him. I’m thankful for him teaching me what relentless love looks like. I’m thankful that his heart is made up of pure Joy. I’m thankful for JJ teaching me to speak up for those who can’t  speak up for themselves. I’m thankful for him teaching others that the uniquely-abled are just as worthy as anyone else. Thankful that in this lottery pool of genes I got JJ.” – Katis, Florida

“I’m thankful for how strong Lucca is and how his smile make our lives better every morning. His smile fixes all the everyday adversities.” – Patricia, Brazil

“My sweet Jett, this season of giving thanks has me humbled and in awe of how much you have changed me. You have given me new eyes for this world and continually draw me near to God as we seek to raise you to bring others to know Him in a new light. Your joy and love for others is so evident in everything you do, even at two years old! I’m so thankful to be your mama and am beyond blessed to watch you grow into the smart, silly & passionate boy you are. We love you, buddy!” – Stephanie, California

On behalf of “our people,” the CHAMP1 family and research community, I want wish you the very best Thanksgiving holiday. I hope that it includes lots of fun and good food, while being surrounded by your own community, whomever that may consist of. It is not always who we expect it to be, but sometimes those unusual connections can become the most meaningful. I also hope that you’ll join me this week in taking extra time to focus on all of our many blessings. Gratitude really does change the big picture and it doesn’t have to take much effort or time. After all, there is always, always something to be thankful for and we are all in this together.

xo – Lindsay

The Ugly Game of Comparison

The comparison game is a tough one, isn’t it? It seems that every direction we turn there is someone doing better, doing more. Making more money, living in a bigger home, taking a more luxurious vacation (or a vacation at all), driving a newer car. It seems especially relevant in this age of social media where the highlight reels of others’ lives are so easily and constantly accessible for our mindless scrolling pleasure. It doesn’t take much to fall into the trap of doing and going and being enough, measuring ourselves by the standards set by this exhausting culture of more.

Sometimes, if I’m not careful, it’s easier than I wish it was to fall into the child-to-child comparisons. I look at Landry where she’s at right now and fight the urge to compare what we are doing to what I was doing with Chandler at this same age. When Chandler was this age, she went to ballet class; yesterday Landry went to PT to work on standing. Chandler and I used to go for cupcakes after dance; this morning Landry had feeding therapy and sometimes I feed her through a tube. Chandler and I had conversations by this time; Landry had speech this morning too. When Chandler was this age we had so much fun.

But what a dangerous and incredibly unfair place that is to let my mind rest, unfair to both girls and unfair to myself. When Chandler was this age, she didn’t still lay on my lap to take a bottle. She didn’t need to be rocked to sleep anymore. She wasn’t nearly this happy all the time. I certainly couldn’t have snuggled her on my chest for a hike and expected her to be content. Landry and I are having so much fun too. It just looks really different.

Different isn’t bad. It’s not better or worse, greater than or less than. It’s not more or less successful. Different absolutely does not equate to value. People always have and always will have different ways of doing things and living their lives than the next person. Children always have and always will have different ways and paces of developing. How boring would it be if we all did things the same way anyway? If I’m being honest, when I started recognizing this life for exactly what it is – not better or worse, just different – I realized different is a pretty fun place to hang out.

xo – Lindsay

The Road to Diagnosis: Jump Into Genetics

Let me just tell you something. You never sit through a high school science class thinking that you’ll someday have a child who requires extensive genetic testing. If I had known, trust me, I would have paid a lot more attention. At this point in our journey I could tell you the most basic of the basic facts: amino acids are the building blocks of a protein and genetic code is made up of four letters, but please don’t ask me what four letters they are. Like many other pieces of information I thought I’d never need to remember later in life, I was wrong.

Landry’s first appointment with her original geneticist was at St. John’s hospital in Springfield in October of 2019, a full three months after the referral was placed. We spent the first portion of the appointment virtually with a genetic counselor. This is where you go over extensive parental and family history, among other things, in preparation to see the doctor. It was exhausting, if I’m being honest, and there was still so much talking left to do. We then spent the next portion of the appointment with the doctor before ending in the lab having necessary labs drawn.

I was a little unprepared for how strange an appointment with a geneticist would feel. In addition to looking closely at every square inch of Landry’s body, she took several photos of her features and measurements of her head, belly, and limbs. I’m sure parts of her exam have slipped my mind by now too. But aside from all that, a geneticist is trained to look at a person and point out all of the things about their features that might be just the slightest bit off. They are trained to know the many different physical characteristics of hundreds of syndromes, disorders, and diseases. Something that we look at our child and might see as quirky or cute or unique, a geneticist might see as an indication of a specific syndrome or family of disorders. In Landry’s case, some of the things pointed out were her low set ears, small mouth, protruding tongue, and flat, wide nasal bridge (this one I had noticed since early on). Do you know what, though? A geneticist doesn’t call these things “cute” or “unique.” They are clinically referred to as dysmorphic features. Excuse me… dysmorphic?! I’m sure my thoughts were something along the lines of, “I know this is your job, lady, but this is my baby. Don’t you think you’re exaggerating a little bit here?” I mean, just look at that face…

7 months

I have since learned that many clinical terms can sound harsh to the untrained ear; I can recall a few instances when terminology has even bordered on offensive. But luckily, as my knowledge has expanded (the four letters of genetic code are A, C, G, and T, by the way), my skin has also grown thicker. I still don’t care for the term “dysmorphic features,” especially not when referring to a child in front of presumably worried or fragile parents, but I can now understand it for what it is: a medical phrase, not a determination of a child’s worth. I mean, there’s that and the simple fact that no one has ever asked my opinion on changing things up.

I think the overall consensus with the doctor that day was that our biggest concerns were low muscle tone (hypotonia) and lack of developmental skills for Landry’s chronological age. With that in mind, she ordered a standard panel for diseases that present with hypotonia. Among them were SMA (Spinal Muscular Atrophy), Myotonic Dystrophy (a type of Muscular Dystrophy), and a few other syndromes I knew nothing about. She also ran a CMA (chromosomal microarray) and a metabolic panel. We were told that results from everything should take about four weeks. However, some of the diseases in question were potentially devastating and four weeks felt more like four years. Thankfully the nurse was very thoughtful and called with each new test result rather than waiting the full time to call with them all. SMA was ruled out the most quickly and I remember feeling so incredibly grateful that day (I was standing in my room making the bed, one of those things you’ll never forget). Over the course of the next several weeks, everything else came back negative as well. We waited the longest on the results of the very-long-chain fatty acids test. This was good in that Landry wasn’t affected by anything mentioned above, of course, but unfortunate for the obvious reason that we still had no answer. I didn’t yet realize either that we had only scratched the surface of genetic testing.

In addition to bloodwork, there was an imaging component to Landry’s first round of genetic testing. Completed first was a renal sonogram; this resulted normally. We then had an echocardiogram done, which was mostly normal, but did show a mildly-dilated aorta. This has been something just followed annually by a cardiologist. The final imaging portion done was an MRI of the brain. At this point, we had seen a neurologist and had an EEG completed with normal findings. The neurologist deferred to genetics for further testing. The MRI was performed in November of 2019 (the day before Thanksgiving that year) and was Landry’s first time under anesthesia and being intubated. The MRI was completed uneventfully and the same thoughtful nurse called the same day so we would have results for our Thanksgiving weekend. They were looking for any malformations or missing pieces of Landry’s brain that would explain a developmental delay. The only findings from the original report on Landry’s MRI was something called BESS (Benign Enlargement of Subarachnoid Spaces); this was said to be of little concern and not a cause for significant developmental delay. Our neurologist later reviewed the MRI images and wrote a report of his own findings. His read, “mild atrophy nonspecific to developmental delay,” which was a fancy way of saying not enough atrophy to cause a significant delay. I later learned that these are two ways of saying the same thing. After all, for one thing to be too big (benign enlargement), something else must be too small (atrophy). Once again, this was all great news from the standpoint of Landry’s brain formation and there really was not more fitting timing than the day before Thanksgiving to learn of it. But again, we were left with no answers.

November 18, 2019 – 8 months old – day of renal ultrasound and echo

I’ve said often in this journey that, if God is trying to teach me anything through this, it’s patience. That has never been a strength of mine. I’m not exactly a perfectionist either, though; I like things done even if they’re not done to perfection. I like to cross things off the list. It’s not that I wanted to find something “wrong” with Landry; I wanted a reason for all we were dealing with. I wanted to know why an eight-month-old could barely hold her head up and why it was still such a struggle to feed her. I wanted to know why, even after getting glasses, she still didn’t seem to focus. I wanted to cross something, anything, off the list.

When I was looking back through Facebook for pictures from this time period, I came across an old post. I had recapped what I just wrote about here and said, “We’ve been in a long period of information gathering so we are looking forward to hopefully seeing all of our hard work come together soon.” It took reading that for me to realize that I really didn’t have a clue. I wish I could go back and prepare myself for some of the longest months that were still yet to come. That even after we eventually receive our diagnosis, we still won’t really have answers. I’m sure it’s for the best that we don’t know a lot of things ahead of time. There’s many things we wouldn’t do and, consequently, a lot we would miss out on. As tough as the last three months had been and the months were to come, they were filled with much joy that I would have hated to miss. More to come on that when my brain isn’t so overloaded from remembering all these terms 😉

xo -Lindsay

** I’m honored and excited that you’re here as I continue to tell the story of our road to Landry’s diagnosis and beyond. I plan to be an open book in hopes that our story can be a blessing to someone else. I absolutely welcome and will happily answer any questions about our journey or Landry’s diagnosis. If you want me to elaborate on anything at all, please just ask!

The Road to Diagnosis: Eyesight and Advocacy

The first time I advocated for Landry, it really didn’t feel like much. It wasn’t a defiant, hands-on-my-hips, dig-my-heels-in sort of moment that I sometimes mentally associate with advocacy. Although, I will say, I’ve had some of those moments since and Pete would tell you that I’m especially good at the hands-on-my-hips part, whether I’m speaking up for Landry or not.

I was confident Landry couldn’t see; that’s how it started. I couldn’t explain how I knew, I just did. I’m starting to learn that that’s just how moms work. I was as certain that Landry couldn’t see as I was that the grass is green and the sky is blue. I mentioned in a previous post that Landry was not making any eye contact, visually tracking any objects, and was not following me out of a room or searching for me like a baby of her age should be. This was hard for obvious reasons – a lot of bonding happens through eye contact – but it was also clear that something was wrong. I knew it could be something beyond vision, but I also knew that vision, or lack thereof, was not going to help anything. Truth be told, I wasn’t sure Landry had any sight at all. You could have told me she was blind and I would not have been shocked. Devastated, of course, but not shocked.

Landry’s pediatrician at the time was truly amazing. She was right on the ball with her developmental concerns and I’m often very thankful that she didn’t waste any time. However, our initial list of referrals lacked one that I felt should be on the list and wasn’t: pediatric ophthalmology. I told our doctor that I was confident Landry couldn’t see and I wanted to see an ophthalmologist. I could tell that she didn’t agree with me. In fact, I think she came right out and said that she didn’t think it was a problem with Landry’s eyesight. Regardless, she did it anyway. There. I did it. I advocated for Landry and that’s literally all it took. All I had to do was ask and, lo and behold, I got just what I requested, however reluctantly it was. It wasn’t hard and was the gentle introduction to speaking up for Landry that I didn’t realize I needed.

If I could offer one big piece of advice, it would be this: if a doctor does not take you seriously as your child’s best (or maybe only) advocate or, at the very least, cannot provide a satisfactory explanation that eases your mind, they are probably not the doctor for your child. It doesn’t mean they’re a bad doctor. It doesn’t mean your opinions are too strong. It doesn’t mean their medical advice might not be great for another child. It means only one thing: you are not a good fit for each other and that is OK!

If you didn’t know, pediatric ophthalmologists are not easy to come by. There are only two in Illinois outside of Chicago so they are in pretty high demand and hard to get into, especially when being established as a new patient. While we were waiting on the referral process, however, I had a scare with Landry’s eyes. Changing her diaper one day, I happened to notice that her pupils were different sizes. I knew enough to know that this could be dangerous so I immediately called her doctor (I think still not knowing what, if anything, was going on with her neurologically exacerbated my worry). Our pediatrician saw her that afternoon and, thankfully, felt comfortable clearing us to wait to see the eye doctor. This could have warranted an MRI of the brain, but our doctor was not in favor of unnecessarily sedating a five-month-old and wanted to defer to the eye doctor; I agreed. The good news in that situation was that it did speed up our wait to be seen. Even faster than that, they worked us into a cancellation and we were seen the very next week – hallelujah!

Our first appointment was a long one. If I remember correctly we were there for almost four hours. We waited a while, were seen for medical history and intake questions, eyes dilated, waited again, and then finally examined. I was nervous that morning. I was nervous that, for some crazy reason, her vision was going to be fine and I was going to feel really silly for pushing it. I’ve been asked a lot how you can write an eyeglass prescription for someone who can’t tell you what they’re seeing. Because it’s way out of my league to explain the specifics, I’ll just say that it was really fascinating. With her eyes dilated and me holding her still, they were able to use different magnifications to determine her visual ability and her prescription. As it turned out, Landry did have eyesight (praise God!), but, as I expected, it was not good.

Landry had a farsighted prescription so strong that it put her in the category of “severe.” While she did have vision, she was not able to see anything around her that wasn’t blurry. I have tried before to make an actual determination of what this means in terms of distance, but unfortunately, there’s no straightforward conversion of visual acuity to diopters (measurement by which eyeglass prescriptions are written). Her prescription was actually so strong that she could not be started out in a full-strength pair of glasses. We would start her off with half of her prescription and then give her the rest six months later. Unfortunately, between Landry’s hospitalizations, COVID, and a few other circumstances out of my control, this actually still has not happened, but that’s a story I plan to dive into another day.

Once again, we had a doctor, her staff, and a plan that I felt completely comfortable with as we left the office that day, but despite that, I remember feeling a very broad range of emotions as we left as well. It feels strange to say that I felt happy, but in some ways I really did. Of course, the most obvious reason being that, with correction, Landry would be able to see well, but there was also a huge satisfaction within myself that I knew my baby so well and felt strongly enough to ask for what she needed. This was like the mother (no pun intended) of all “I told you so!” moments! On the other hand, though, I was saddened by the fact that Landry had lived five months in a world she couldn’t really see. She had never clearly seen my face or Pete’s or Chandler’s. She had never clearly seen her toys or made out the pattern of the wallpaper in her nursery. I truly can’t imagine that, but found comfort in the fact that she didn’t know any differently. Mostly, though, I felt hopeful. I was hopeful that glasses were going to really turn things around developmentally for Landry. It made perfect sense; of course you are not going to track objects that you can’t see, you are not going to play with toys that aren’t interesting to you, and you’re definitely not going to make eye contact with faces you can’t identify.

At the time, I didn’t realize what a long road we still had ahead of us with Landry. But after a couple very long, scary, uncertain months, this was a welcome dose of encouragement. The specialty medical world sometimes seems to just be a big game of “hurry up and wait,” but, finally, we had done something in a timely manner that had actually proven to be very necessary and successful, whether or not it fully explained her delay (spoiler alert: it didn’t). Plus, if nothing else, Landry looked really stinking cute in her new turquoise frames. I involved Chandler by letting her choose the color of them, within reason. We had fun doing this together and it was also the beginning of me realizing how important it is to involve her in Landry’s care.

one of my most favorite pictures

I tell you this story to, quite simply, say this: YOU know your baby better than anyone else ever could. Doctors are medical experts, but they are not experts on your child; only you can fill that job description. If something doesn’t seem right it very well might not be. If you’re questioning something, ask. If you’re not taken seriously, find someone who will. If you’re not satisfied with your experience somewhere, move on. The very worst thing that could happen is that you could be wrong (I get it, I don’t like being wrong either). But the very best thing that could happen is that you’re right, which you probably are, and you get to provide opportunities and care for your child in a way that no one else can do. Trust your gut, mamas. We are the best at that. Ask the questions. Have the intimidating conversations. No one can love or speak for your child like you can. We believe in our kids and it’s time to believe in ourselves and our instincts as well.

xo – Lindsay

** I’m honored and excited that you’re here as I continue to tell the story of our road to Landry’s diagnosis and beyond. I plan to be an open book in hopes that our story can be a blessing to someone else. I absolutely will welcome and happily answer any questions about our journey or Landry’s diagnosis. If you want me to elaborate on anything at all, please just ask!

The Road to Diagnosis Pt. 2

As I mentioned in my previous post, Landry’s four month check up was the day the ball started rolling with recognizing and figuring out her developmental concerns. I was thankful then and I am still thankful today that we had a doctor in our corner who trusted my gut instinct as Landry’s mom and main advocate. I have never had a doubt in my mind that it was our proactive approach to her development, or lack thereof in that moment, that got her the head start she needed.

The rest of the day after that doctor’s appointment felt like a blur. I don’t remember a lot of specifics, but I know that I was sad and I know that I was worried for the weeks and months to come and what we might find. It was common for me to pick up the phone following a well baby appointment with Chandler. I thought it was fun to report to everyone that she was happy and healthy, laugh about her height and weight stats, and to recall how our doctor had doted over her during the appointment. I didn’t feel like doing that after Landry’s visit. That evening I eventually filled in some close friends and family that were aware of my concerns that, yes, there was, in fact, something going on. However, in the moments immediately following our visit, I couldn’t bring myself to pick up my phone to text anything out of excitement.

That night I held Landry on my bed. I probably cried, I don’t really remember. I do remember, however, sitting on my bed with her, holding her tightly, and looking her over really well, possibly better than I did the day she was born. I looked at her face, her hair that was coming in, her hands. I tried to look in her eyes, but she didn’t, or maybe couldn’t, look back at mine. This night is one of my most vivid early memories of Landry’s life. I had the next morning to start making my phone calls. I had the next few weeks to start seeing doctors and therapists. I had the next month or two to get my answers about Landry (how naive was I? I honestly thought the process would move that fast.). But in that moment, with Landry on my bed, I let myself have that one night. I let myself feel the emotions of the day and I let myself feel the tension that had built up over my suspicions before I got moving the next morning.

I don’t know if I slept at all. My guess would be not much or at least not very well. I remember waking up the next morning and still feeling the heaviness I closed my eyes with. This all didn’t go away overnight, not that I expected it to. I had a list of phone calls that needed my attention. Although I still felt the dread I took to bed, it was topped by a sense of urgency. We had recognized the problem(s) with our doctor, she had given her guidance as to our (my) next steps, but no one could physically take those next steps for me. As I write this, I’m reminded of a funny graphic I’ve seen that says, “when you’re looking around the room for an adult and you realize you are the adult.” That’s sort of what this felt like. I’m the mom; this was all on me.

I started with Early Intervention, which, if you’re familiar with them, getting started can be a process. I left my first voicemail and thought I’d be waiting. But something that I can now recognize as only God working, nudged me to text a physical therapist friend I made a few years prior through Chandler’s EI experience. I apologized for bothering her (I imagine that medical professionals get sick of constantly being asked for advice) and I briefly explained our doctor’s visit from the previous day and what my next steps were to be. I mostly wanted to know from to her if there was a way to fast forward the Early Intervention process. I am impatient by nature, but I knew that time was of the essence here and my impatience was only exacerbated.

Fast forward a short while and my phone vibrated with a response from my friend. It was a short text. She was on vacation with limited service, but “just happened” to be in a spot to read and respond quickly (I see what you did there, God). We made plans to get together when she got home and she would look at Landry for me, as a friend. She’s a mom too, she understood my fear, and she understood my unwillingness to wait or play games with what little time I had. So to answer my question from above, there is a fast forward button on the EI process; it’s called having a friend in the business and a God that coordinates the pieces of His plan to create a perfect timeline.

I arrived at my friend’s house in the afternoon. It was informal. Her kids were home and she was in comfortable clothes. The only reason I wasn’t is because I had been out having lunch and shopping and trying to pretend I didn’t want to throw up from nerves just prior to our meeting. When I got there, I also realized she had arranged for our new Early Intervention service coordinator to be there as well so I could sign all of my consents and we’d be on our way with the program. Remember that fast forward button I just mentioned? This was it. Landry’s evaluation began and I was simultaneously answering questions from our service coordinator. This could have been overwhelming, but I think I was just so relieved to be starting something that I took it in stride. I summarized my pregnancy, Landry’s birth, and the first few months of her short life. I talked about what she was able to do and what she wasn’t. As we talked, I could see concern on my friend’s face just as I had seen it written on our doctor’s face a week prior. It wasn’t any less alarming this time, but on the other hand, it also wasn’t any less comforting that my suspicions were confirmed once again.

There was one major overarching theme to this meeting; it was that we needed to move and we needed to move quickly. No one could say what was wrong with Landry, but everyone agreed there was something going on. My friend was authorized on-the-spot to make that our official physical therapy evaluation, which I got the impression isn’t common practice, but doable in certain situations (there you are again, God). That authorization got our Early Intervention process started that very day and we also arranged to see two other specialized therapists, a developmental therapist and a feeding therapist. The feeding therapy recommendation stemmed from both ladies watching Landry take a bottle during our session. By this time I had gotten so used to her eating habits that they hardly seemed abnormal to me anymore, but apparently they were alarming. I could write an entire post on feeding and I plan to in the near future so I will spare you those details for now.

The day of this first physical therapy evaluation is another one that I remember like it was yesterday. I remember the smallest of details down to the shirt I was wearing and what the rug looked like that we sat on. I also remember that Landry, whom, at four months old, should be meeting a much longer list of developmental skills, was only able to complete seven. Only seven – I remember how devastating that felt. The ability to quantify my concerns and her lack of activity with a percentage on a scale was hard to process. At this point, the delay had just been a thought in my mind. This made it tangible. BUT – and I capitalize that because it’s that important – it also gave us a marker by which to gauge her improvement! I won’t lie and say that thought was in the forefront of my mind on that day because it wasn’t. In fact, my mind couldn’t have been further from such a positive thought. But I’ve seen enough in the year that’s followed to know that it is so important to have a starting point. I will touch in depth on this another time, but Landry now has a lot more than seven skills and we’d never know exactly how much she’s grown if it wouldn’t have been for the information provided in that original assessment, as upsetting as it may have been at the time.

I was discouraged and disappointed that day when I left my friend’s house. I barely made it to the car before the tears flowed. Landry was over four months old at this point and was the developmental equivalent of less than one month old. Unless you’ve been there and I know many have, I can’t find the words to tell you how that feels as a parent. Truly nothing in my life to that point compared to what I was continuing to find out about my baby. I don’t say this to put a damper on your day, however. I tell you all of this because of the hope it will provide when I tell you later how far Landry and our family have come. We have all made it a LONG way from those first few weeks of processing and trying to trudge forward through what felt like wet cement. Yes, it felt that difficult in the beginning. But I’m able to write this today because I’ve seen the other side of the story by now and I can tell you that it gets better. So much better.

No one can gauge progress without a starting point. No one can see how far they’ve come unless they make note of where they started. I need this reminder daily and I am thankful that Landry provides it for me. God knew what I needed when He gave her to our family. It is impossible to help someone grow and develop if we aren’t willing to meet the person where they’re at. That includes ourselves. That day I came to terms with and met Landry where she was at and we are both better people for it.

I am honored and excited that you’re here as I continue to tell the story of the road to Landry’s CHAMP1 diagnosis and beyond. I plan to be an open book in hopes that our story will be a blessing to someone else. I absolutely will welcome and answer any questions about our journey or Landry’s diagnosis. If you would like me to elaborate on anything at all, please just ask!

xo – Lindsay

The Road to Diagnosis Pt. 1

Fifteen. My parents were married on the 15th of the month, I was born on the 15th of the month, and it’s no secret that taxes are due on the 15th of every April. I got my first cell phone and had my first boyfriend when I was fifteen years old. I’ve lost and gained the same fifteen pounds more than once over the years and I’ve easily been to Destin, Florida fifteen times, probably more. I’ve been out of high school almost fifteen years (excuse me, what?!). As I started composing this first post in my head, I’ve wracked my brain for any time in my life that that number has been as defining or significant as the last fifteen months have been and, as you can see from my measly list above, I didn’t have much luck. The truth is, nothing has tested me, taught me, stretched, or grown me more than the journey that began on March 15th, 2019.

Landry was born early in the morning weighing a perfect 7 lbs. 14 oz., a scheduled C-section following a long, not-so-pleasant pregnancy. I’m not one of those women that love being pregnant and I’ve always felt a little bit of guilt surrounding that, but the last trimester of my pregnancy with Landry only reiterated it. At 20 weeks, it was discovered that I had above normal amniotic fluid levels (polyhydramnios). Although it was uncomfortable – weighing 5-6 weeks ahead for my entire third trimester uncomfortable – it was nothing that my doctor was too concerned over. We kept a close eye on Landry through the end of my pregnancy with weekly ultrasounds and NSTs. Landry was not an active baby in the womb; she went long, worrisome stretches without movement so we had to regularly check in on her. In hindsight, the decreased movement combined with increased amniotic fluid was probably an indication of a genetic anomaly. I did question this a few times, but when my doctor wasn’t worried, I chose not to worry either.

When Landry was born, she did not cry for the longest time. OK, it probably wasn’t that long, but when you’re expecting that first sound of life from your new baby and it doesn’t come… it sure seems like a long time. I wish I could tell you more about these first few minutes of Landry’s life, but as emotions got the best of me, I was given something to calm down and I don’t remember them. I found out later that Landry did require some resuscitation at birth, but if a reason was ever known, it wasn’t given. Her first APGAR score was only 4, but she quickly rebounded to 7 and 8 at 5 and 10 minutes, respectively. The fog started to lift and I vaguely remember bits and pieces of the recovery room. As I took in the the tiny features of my sweet new baby, the trauma of her birth seemed to melt away. The rest of our stay in the hospital was filled with all the moments I had been looking forward to: Pete announcing to grandparents in the hallway that we had another girl, the perfect balance between visitors and alone time, sisters meeting for the first time, and just a general soaking up of all the newborn deliciousness.

sweet newborn Landry

We brought Landry home on a Monday, Chandler came home from my parents’ house on Tuesday, and Pete went back to work on Wednesday. The adjustment from one child to two went mostly better than I expected, but I will never forget the day Chandler stuffed a tiny, newborn Landry into her baby doll pram and rolled her into the other room before I realized what was happening. I was sure that I couldn’t handle this and Pete needed to come home for the day. Update: he did not come home for the day, Landry was fine, Chandler never did it again, and I was, in fact, perfectly capable of keeping them both out of harm for an entire day. The rest of her first few weeks were pretty uneventful. We did the doctor’s appointments, we did the first few outings with two kids, and we settled pretty quickly and easily into the new dynamics of a family of four.

One week turned into two weeks, blurred into six weeks, and before I knew it, we were two months into Landry’s life. Things seemed to still be going mostly as planned, but about this time I started noticing that Landry wasn’t starting to make any eye contact and that she had a bit of a “lazy eye.” Not a big deal to me at the time, but something that I brought up to our doctor at our two month well baby appointment. She was not concerned, said that it’s too early to tell much of anything in the eyes as they are still focusing. I left that appointment satisfied with the explanation and breathing a small sigh of relief. I decided that I would keep an eye on it (truly, no pun intended) and bring it up at our four month visit if I needed to.

It was in Landry’s third month that my worries about her development started and, along with it, came a sometimes overwhelming sense of uneasiness. By this time, Landry was not making any eye contact, not changing any facial expressions, not holding her head up, and still not moving her limbs much on her own. She was not starting to track objects or follow me out of a room with her eyes, her feeding difficulties were not improving, and she was so content that it was almost alarming. People would make comments that she’s the best baby they’d ever met or they didn’t hear her make a sound. This was true, but seeing it daily as her mom, it was starting to seem like something beyond just being a content baby. Please don’t get me wrong, we loved her and appreciated her for exactly what she was, a sweet, easygoing baby. She got plenty of love and attention, but I started to just get a gut feeling that things weren’t progressing as they should be with her development. My plan was to keep a list of my concerns and carry it with me to our four month check up so I could bring them up and not forget anything.

Our appointment rolled around (July 17th, 2019… don’t ask me how I remember that) and I carried Landry and my list into the office. I remember telling myself on the way in that I couldn’t minimize or forget to bring up my list of concerns. I even gave myself a pep talk: your concerns are valid, you’re not taking up too much of their time, if you don’t ask questions about her development, no one will. Little did I know, however, I didn’t have to bring anything up. The exam started and, in that moment, I saw the concern written all over our pediatrician’s face. All of what I thought I saw in Landry’s development, or lack thereof, was confirmed without me even saying a word. This, of course, was terrifying and, in the moment, I felt an almost paralyzing fear. I felt the urgency and gravity of the situation as our pediatrician rattled off referrals we needed: neurology, genetics, physical therapy, early intervention, ophthalmology. My head was spinning and eventually I cried, right there in the room. All I could hear was a big list of the things my baby wasn’t doing that she should be at this point. My perfect, sweet, content baby wasn’t developing typically and now, it was alarming to more than just me.

We left the office that day with the small beginnings of a game plan, referrals to doctors I never dreamed we’d need, and the support of the most amazing pediatrician and nursing staff. My list of concerns transformed quickly into a list of to-dos and follow up calls. And, I won’t lie, for a brief moment, my world felt a little bit like it was crashing down around me.

You always hear that hindsight is 20/20, but if you had asked me a year ago if I would ever look back and see the silver lining in that day, I would have laughed at you (or probably cried because I don’t remember being in the mood to laugh). But here I am, a year, almost to the day, after that first appointment and I can honestly say that I see the silver lining. I see a mom who needed to have her concerns validated, I see a mom who needed to know that she knows her baby better than anyone else, and I see a mom who needed to know that her opinion matters. Of course, that day I walked out of there terrified and, honestly, just sad, but with those initial emotions behind me, I can see that I actually walked out of there empowered. Empowered by my own mom and our pediatrician who, not only believed me, but believed IN me. What felt devastating at the time, and truly was – I would never write off those feelings – was actually the beginning of me becoming the woman and mother God intended me to be for my family. It was the first step, albeit a shaky, fearful one, on a journey that I never, in a million years, thought I would walk, but has turned out to be beautiful and rewarding as much as it has been difficult and exhausting. It’s a journey that I can’t wait to share with you.

I’m honored and excited that you’re here as I continue to tell the story of our road to Landry’s diagnosis and beyond. I plan to be an open book in hopes that our story can be a blessing to someone else. I absolutely will welcome and happily answer any questions about our journey or Landry’s diagnosis. If you want me to elaborate on anything at all, please just ask!

xo – Lindsay