by Annie | Feb 19, 2022 | Blog
We’re not even out of the hospital yet and there’s already so much to unpack… figuratively of course. I haven’t begun to process the trauma we experienced during our 6 hours in the ER and the overwhelming, unfamiliar scientific terms swirling around in my head. It’s all so much.
A quick backstory – Max’s finger was red and swollen two weeks ago. While he is what most folks would call non-verbal, he is very communicative. However didn’t alert us to this angry digit. Mike noticed it when he sat down with him on a Friday after school. Alarmed, I took him right to urgent care where they drained it and sent us home with five days of antibiotics. It seemed to be getting better, until it wasn’t. After his pediatrician suggested x-rays that came back abnormally yesterday, we were immediately referred to the ER. I’ll spare you all of the details, but if you didn’t know, the ER is quite possibly one of the least sensory-friendly places on the planet, even despite the efforts of caring staff in making accommodations for Max where they could. During the six hour ordeal, four of which included restraining our sweet boy so we wouldn’t rip out his IV or aggravate the finger from which the hand surgeon removed his entire nail with just a local, the only thing that kept replaying in my head was “this is so terrible. I’m not sure this could actually be worse for a sensory kiddo.” It. Was. Awful.
The word amputation was used to prepare us for a worst case scenario, and another doctor cautioned us that if there was osteomyelitis (infection in the bone), he’d have to have IV antibiotics for WEEKS. All I could think about was “right now? You’re choosing to tell us all of this now? Have you read the room? Our child is beside himself. His parents are sweating from holding him down. Could we chat about this later perhaps?”
Mike and I kept it together for as long as we could, and then eventually took turns crying out of frustration and fear, but mostly out of feeling completely helpless that our baby was in so much pain and distress.
Fast forward a bit and after six hours we were admitted and brought to our room. The only way to be sure Max didn’t have osteomyelitis was to do an MRI which they wouldn’t be able to do until the morning. He was already scheduled to have an MRI on his brain in a month along with an extended EEG to determine if he’s having absence seizures, so since he was going to be sedated for the MRI on his finger now, we asked if they could just do his brain at the same time. They agreed – Hallelujah for efficiency.
MRI results came back this afternoon. No Osteomyelitis (insert giant sigh of relief here!), but the brain photos showed a chiari I malformation at the base of his brain. They weren’t looking for this, which is often how they’re detected. Sometimes people go their entire lives with a similar malformation and never know it because they don’t have any symptoms, others require significant intervention to relieve the pressure this causes. Some symptoms align with things we know Max has experienced, others it’s difficult to know for sure.
We came in for a finger and are leaving with the addition of the neurosurgery team to Max’s circle of support. That doesn’t mean that he’ll need surgery necessarily, but it means a spinal MRI, more x-rays, appointments and consultations to determine the path forward. This could be a huge missing piece to our Max puzzle.
My parents raised their four daughters to be resilient and resourceful. But I’ve come to learn that doesn’t mean we don’t feel afraid, even numb at times. We just don’t stay there for very long because we’re on to creating a plan of action and putting it into place. Sometimes I don’t think I allow myself to stay there long enough and really feel the feelings to be honest. Working on that.
I never felt like I was good at compartmentalizing, but I think my brain has done that for me in this instance. I can’t feel overly scared or nervous about what the future holds really, because there’s so much to navigate in the present moment. I find I’m holding onto the optimistic things the neurosurgery PA shared rather than spending any time thinking about anything scary and intimidating that she mentioned. I just can’t right now.
Mike went home for the night to be with Fletcher, although he has been loved and cared for by his grandparents since this whole ordeal started and has done just fine. There’s a huge balancing act when you have another child at home, because he, too, is navigating this with us, just from afar with no real context. I FaceTimed our very sensitive and concerned Fletcher at home tonight. After he could finally lay eyes on his brother, see his finger and look at the buttons and light on the machines he said “So how is this for you, Mom? Where do you sleep? Can you show me what you see out the window?”
In addition to knowing his brother is okay, he needed to have a picture in his mind of where his Mama is. I melted. While we work really hard to prepare him for major life events, this isn’t one we could scaffold for him. That, too, has been hard. Our routine-oriented seven-year-old has had anything but routine the last two days.
I hear the periodic ambulance or the screaming baby down the hall and I can rationalize how lucky we are and that we could be navigating situations that are far worse. But I also know that this has been both traumatizing and terrifying and we have quite a road in front of us.
I’m staring out of our 10th floor window at cars cautiously navigating the snow covered roads, while listening to the steady breathing of our brave and tenacious baby, grateful for the warmth of our room. I have to keep reassuring myself that we’re safe, I’m safe. Because even though we are safe in the literal sense, I just don’t feel it. I’m uneasy, unsure, and concerned.
I’m comforted in knowing that today was lightyears better than yesterday and tomorrow will likely be better than that. Being the recipients of a lot of love and support has been really comforting, too. We are lucky to have each other, but also a squad of really amazing folks who love us hard.
I’m ending a long day focusing on gratitude, I find that helps me refocus, regroup, and find my footing. I know tomorrow will be better.
I can’t create a list of things I’m grateful for in this moment without a special nod to Peppa Pig and Blaze and the Monster Machines for being such a constant source of entertainment for Max while he’s confined to a bed. They may single-handedly be responsible for taking his mind off of that blasted IV in his hand!
My gratitude extends to our access to amazing medical care, all of the people caring for Max have been wonderful. A little extra shoutout to the nurses on West 10. They have embraced his sensory needs with grace, always making us feel like they get it – I’m not sure there’s a greater gift for us as parents.
Most notably, I’m grateful for our families and friends who are in this right along with us… and for hope. If Max and Fletcher have taught us anything, it’s that there is always, always hope.
by Annie | Feb 13, 2022 | Blog
Mike and I had a night away last night thanks to our village who kept our boys. We don’t do it often, but are always reminded of why it’s important. When we were younger, I don’t think either of us realized the power of twenty-four hours.
We’ve both been burning the candle at both ends balancing work, coaching (Mike) and home and I had been sick all week, even into the morning of our date day. Neither one of us was about to let an opportunity for hours of solitude slip by, however.
While a night at a boutique bed and breakfast felt like a splurge, it was worth every penny and every quiet moment. French-themed, the room was tastefully decorated with noteworthy touches, but not overdone. I appreciated how orderly it was – that alone felt like a break from our usual chaos of toys, throw pillows and blankets all competing for the same floor space in most rooms on our main floor.
I was smitten with the pristine white towels and robes, plush pillows, and a snuggly bed that screamed “please, come take a nap!”. As I made my way around the room, I was particularly struck by a message on the coasters that adorned a cute little bistro table by the windows. “Life is Beautiful” they said in simple gold script.
It gave me pause. I snapped a photo as a reminder. How ironic that we were there to escape our life for a moment, but were then reminded of how beautiful life is. Maybe escape isn’t the right word. Recharge. We were there to recharge.
At one point – I think while we were eating take-out and watching the Olympics (we really know how to live it up!) Mike turned to me and said “it is so nice to have a moment to just take a deep breath with you.”
I sat with that for a minute. That’s what it felt like. An opportunity to pause, take some deep breaths and regroup…together. To be reminded of who we are as a team, that we’re stronger together, and how grateful we are to be on this twisty turny journey together.
Twenty-four hours isn’t a lot of time for some, but for us, it’s a total reset and we work hard to fit in our favorites – pedicures, delicious food, good coffee, maybe a little wine, and the permission to do absolutely nothing. And let’s be honest, nothing recharges you more than a three-hour nap followed by 9 hours of uninterrupted sleep.
We enjoyed a lazy morning, delicious breakfast and the ability to have some really important dialogue that life is often too busy for. For the first time in a long time, we had a collective feeling of being at peace with the ability to be present in the moment. The usual lists, demands and appointments that pull us in a million directions were silenced for a while. It was a gift, really.
Our kids never skip a beat in helping us with re-entry. Bless their hearts :). We’re always reminded of why we missed them and sometimes of why we miss our time away. And never do we realize just how loud and over-stimulating our life is more than in the first half hour of returning from a getaway. But upon our return, we’re able to look at each other with a collective knowing, an understanding of how feeling recharged makes our chaos easier to shoulder, more patience, more bandwidth, more capacity overall.
Life is hard. It’s messy, chaotic, overwhelming, filled with joy, sometimes sorrow, lots of love, lots of hugs, sometimes tears, laughter as far as the eye can see, twists, turns, highs and lows. But as we were reminded by the saying on the coasters in our room, no matter how it looks, life is also beautiful. And sometimes even a twenty-four hour break makes it easier to see.
by Annie | Jan 22, 2022 | Blog
Dear Administrator:
Let’s pretend for a minute that you ordered a crystal vase online. Delicate but hardy, elegant with some jagged edges. Something that can be admired for its beauty and then a second later lay shattered into a thousand pieces on the floor with one mis-step. When it arrives you read FRAGILE: HANDLE WITH CARE in big bold letters on the package.
FRAGILE: HANDLE WITH CARE
Now let’s apply that same statement to the parents of children with exceptional needs that you serve. To quote Frida Kahlo, “She was not fragile like a flower, she was fragile like a bomb.” Flowers are delicate and dainty. That’s not us. We’re hardy and resilient. But that doesn’t mean we can’t be broken, our spirit imploding with the force that accompanies a lack of compassion. This journey is a hard one.
I’m sure you can imagine what parents of children with significant needs navigate on a daily basis, which is now compounded by the weight of this never ending pandemic. Just in case, let me share a snippet. We’ll use yesterday for example.
Meltdown city in our house. I navigated tears and shouts of discomfort from both of my children. They were up early. Clothes didn’t fit right, transitions were difficult, our older son was certain he couldn’t manage staying for after school camp, and it took everything I had to keep it together. And that was all before 6:30 AM. Looming in the background is the fact that we’re currently appealing the decision of our insurance company to not fund the communication device our youngest son so desperately needs. And we’re anxiously awaiting an appointment with neurology in a few weeks to determine if he’s having mini seizures. We’re also terrified about the effects Covid-19 would have on his little body that is too young to be vaccinated. So, much like other families, we’ve completely altered our life to ensure he is as safe as possible. The weight is almost too heavy to bear at times.
Max is unable to wear a mask as a function of his disability. So when the school district decided to go back to in-person learning we were forced to decide if we sacrificed his safety for interaction with his peers or if out of an abundance of caution we keep him at home amidst the current Covid surge. That decision didn’t require much thought. Of course we kept him home. Is that the easiest option? No. Not in the least. But it’s the right one.
While his older brother really struggles with virtual learning, Max thrives. Removing the environmental stimuli of so many things for his senses to process at once has proven to allow him to focus more on engaging in activities in meaningful ways. Sometimes more than he does during in-person learning. And maintaining some semblance of his routine is critical for his development. So when the decision was made to return in-person, we talked with his team and determined that he could participate in his small group for 30 minutes each day. I mirror the activities his group is doing with him at home and he is able to interact virtually. It works great.
And then, a few days into our new arrangement, out of nowhere, I received the following email. Not a call, not a meeting. An email.
Good morning,
Unfortunately, our district does not allow students to work virtually unless they are quarantining or isolating.
Max will not be able to attend online lessons or complete Seesaw assignments to be counted present.
This is beyond my control, as I do not make policy. If it were up to me, I would allow him to attend.
Please feel free to contact me if you have any questions.
-Administrator
——————————————————————————————————————————————————————————————————That was it. Except it wasn’t, because I did in fact have questions.
Beyond the initial “so what do we do now?”…..
- Did you advocate for us?
- Are you listening to the staff who work with and advocate for him every day?
- Do you understand that he is not a typical learner, so therefore may require a-typical learning strategies?
- Can you appreciate that education during unprecedented times may require unprecedented solutions?
- Can you empathize with how difficult this time is for us and so many other families navigating situations like ours? And can you recognize how a simple “this is what the district policy says, but my team is actively working on a solution to meet Max’s needs” builds a bridge of support between us rather than the “this is beyond my control, as I do not make policy. If it were up to me, I would allow him to attend” that I was instead met with?
Here’s where the fragile like a bomb part comes in. Our life is such that we are constantly towing the line of managing what life throws at us and being in the state of a complete family crisis. It’s the same as the aforementioned vase. One mis-step, one curveball of circumstances out of our control and we’re no longer managing. We are simply surviving, shattered into a thousand pieces strewn all over the hardwood floor.
FRAGILE: HANDLE WITH CARE
I’ve learned that in difficult moments we need more grace. All of us. So I’m flipping the script and telling myself that maybe in this moment, you, too, are fragile. Here I sit, handling you with care.
I know things are hard. You and the staff you lead are being asked to do the impossible during difficult circumstances. Almost every simple daily task has been altered in some way because of the pandemic and you have to be ready to pivot on a moment’s notice. You have expectations from district administration, your staff, students and families. And there’s quite frankly no way to ever make everyone happy. You are in a thankless position and I can absolutely appreciate that.
I recognize the need for policy, but I also know that when there is an IEP involved, there should at the very least be a conversation. I have the utmost compassion for educators, like you, who are navigating unprecedented times with little support and even less time. But in situations like this, even a little goes a very long way.
I’m not asking that you make an exception solely for my child. I’m asking that you advocate on behalf of all of the kids who need a little extra. To consider what may seem like unconventional solutions during a time that is anything but conventional. And if you are stuck between a rock and a hard place, let’s rally the troops together. Parents are incredibly powerful when they use their voices for good.
Moving forward, let’s agree to meet each other where we are. As families like mine are sending you a giant piece of our hearts completely unprotected every day, giving you the very best that we have, please greet us with a tiny bit of compassion. A simple “gosh this is really hard and I can appreciate what you’re dealing with, but…” before the heavy hammer of “I don’t make the policy, I just enforce it. ” goes further than you could possibly imagine.
In return, I will meet you with grace and compassion as well, reminding myself that you’re likely receiving numerous other requests like ours and you’re only one person. If and when it is warranted, however, I will always, always advocate for my child – that’s a part of the deal. Just like it’s your job to represent your staff and students, it’s my job to be Max’s fiercest ally.
I recognize how difficult things are for you – we don’t have to experience the same kind of “hard” to reach a hand of support out for others. Life is hard for everyone as we head into the third year of the pandemic. Thank you for showing up everyday, for the ways you serve kids and families and for working to not have a “one size fits all” approach to education.
We’re all FRAGILE: HANDLE WITH CARE.
by Annie | Jan 14, 2022 | Blog
What’s a word to describe the MOST exhausted? Whatever you come up with, that’s me in this very moment. And honestly, my kids too. We’re all burned out from two weeks of virtual learning. It has been a wild ride. We aren’t typical learners, thus we don’t do virtual learning in a typical way.
This morning, despite our normal reminders, timers and routine, it took me an additional 10 minutes to get Fletcher on for his morning meeting. It was clear he was not just done… but done done. He mustered through the usual morning song, greetings, calendar and sharing time with his class by taking a running start, propelling himself onto our ottoman, and then flipping from the ottoman to the couch all while listening, reciting and participating. Repeat, repeat, repeat, repeat. All while Max requested his favorite snacks, also on repeat, and the dog wondered what kind of twilight zone he had entered. I was right there with him.
Max and I do his virtual meets together. He normally loves them, but today, he didn’t want anything to do with his normal routine either… and at one point just laid his head in my lap. He, too, was done done.
I was done done about four days ago and just knew the three of us couldn’t do this for the rest of today so I made the executive decision to institute a mandatory mental health day for the remainder of our Friday. It was a necessity.
We packed up, slid into the McDonald’s drive thru just in time to catch the tail end of breakfast (pancakes are one of Max’s only foods, so this was a treat for him), did a few curbside errands, waved at friends through their front window, got a little fresh air, and then ended up at my parents house. That wasn’t in the original plan, things just sort of evolved. After a mini meltdown on their kitchen floor (I sat down to take off my boots and just didn’t get up for a few minutes, ha!), hiding in the bathroom for a bit, taking the long route to deliver something to a friend and then playing a few hands of Gin Rummy with my parental units, I finally felt like my sanity was making a comeback…kind of.
Tonight we’re celebrating the start of a long weekend by having a movie night with part of our squad and getting Dairy Queen by DoorDash. And I’m not mad about it. Sometimes these long weeks require extraordinary measures to commemorate surviving and sometimes even thriving through the chaos.
Despite all of the challenges, we laughed a lot this week. Fletcher is becoming quite the comedian and I kind of love it.
Happy weekend, friends! May you, too, experience the kind of joy brought by DoorDashed Dairy Queen.
by Annie | Jan 12, 2022 | Blog
I realized I don’t share as much about Max on the blog as I do about Fletcher – largely because so many of our universal strategies are most often used with Fletcher. Max is no less of a presence at our family, though. He does everything on his own terms – always has. I’ve said this before, but neither of our kids fits neatly into a box. And we wouldn’t have it any other way. We’re pretty certain that Max has said “you can have your typical child-sized box, and let me show you where to put it. Don’t mind me while I’m over here carving my own path. No boxes allowed.”
We navigate a lot of unknowns with Max which for me often translates into worry and anxiety. Beyond some genetic, sensory and communication things at play, we know how incredibly bright he is and so desperately want to let him unfold in his own time while struggling to not force him to HAVE to check the boxes established by societal norms. He seems to get there when he’s ready. (There isn’t a checkbox on any form for that!).
Max challenges us to think differently and has unapologetically propelled his parents into the roles of fierce advocates, detectives, researchers, protectors and challengers. Despite having few words, he has the wisdom of someone who has been around for a while and the grit to get his needs met under any circumstance. The way his mind works is absolutely fascinating. You have to experience it to really know. He is as charming as he is headstrong and has this spry little way of winning the hearts of those who cross his path, even while he’s gently pushing them out of his bubble.
I’m not sure anything could have prepared me for how rich parenthood would be with our kids – but especially Max. It’s not without challenges, certainly. But the rewards are unlike anything I’ve ever experienced. Three years ago I wasn’t in a place to acknowledge or even realize the rewards. We were barely surviving. Everything felt hard with both kids. But with time and lots of therapy comes wisdom, growth and the ability to take a step back in order to appreciate what’s behind you, in front of you, and what progress really looks like.
Today, for example, was progress embodied. You see, it wasn’t long ago that Max couldn’t wear shoes and socks and was so gravitationally insecure that he needed to be carried, worn or bundled securely in the stroller at all times. The poor guy struggled and at the time we didn’t understand why. There was no playing at the playground (because it was an anxiety-ridden experience for him), no experiencing the world around him from the perspective of standing on his own two feet, and things like walking into therapy were a heart-wrenching production. Every. Single. Time.
Gradually with the help of OT and craniosacral therapy we got the gravitational security figured out and then the shoes and socks. And then he was more willing to walk on his own, eventually running, jumping and now even galloping. But never could he walk the whole way into or out of therapy. The task was far too overwhelming for him.
We’ve been adding more distance incrementally and that often includes a meltdown of sorts which is hard. But then today it happened. He got out of the van with a purpose. He marched himself into the building like a man on a mission and headed straight for the therapy gym. He even let me lead us on a quick detour to fill my water bottle without getting derailed. I was preparing for damage control of epic proportions for altering our normal routine – but it wasn’t needed.
On the way out it was the same thing. We put his boots and coat on, he said goodbye to his speech therapist and off we went. Down the hall, to the right, out the doors, and to the van. Not a peep. I couldn’t believe it. We were there just yesterday for OT and he was beside himself about walking down the hallway after therapy. Today? Not a problem.
For some this might seem like such a small thing, but for us, it was a victory to be celebrated. I gushed over how proud of him I was and he sat tall in his car seat with a smile that spanned the width of his cute round face. He did it and he knew… he was beaming.
2022 has been big for Max already. He whispered two words together during OT yesterday, has actively participated in his virtual learning groups for the last week and a half (which he seems to love), identified and named two colors during a virtual session with his classmates yesterday and has been a really good sleeper. I can’t even find the words to describe all of the emotions wrapped up in this one little paragraph. Things are on the move for Mr. Max.
When I lay with him at night I can really see it. He’s clear, connects differently and is more deliberate in his actions.
Most nights he turns towards me, holds my face in his hands for a little while, looks me directly in the eyes and flashes a sweet little grin as if to say “Don’t worry, Mom. I have this all figured out.” It melts my heart unlike anything else can.
I’ll take that reassurance from now until forever. There’s nothing like it.
Here’s to a year of victories for all… big or small.
