Author: laurafeiler

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Warmth.

Ian turns 13 next Tuesday. With spring break and Easter coming, we decided to celebrate early. A dozen friends came together on this windy, cool day to celebrate our son. 

There was only warmth.

I remember the moments after Ian’s birth with the kind of clarity that will not fade for the rest of my days, every detail a part of my living history.

One of those days was the morning I was discharged from the hospital while he was to say in the NICU. We were in this little room on the maternity ward and were all packed up. I was terrified to leave, afraid of the life I was walking into. But I didn’t want to stay here. In this beige room with chair rail and wallpaper and a built-in corner unit that housed a TV and stereo. While waiting we had the radio on, something to fill the room and try to push out the heaviness, or at least make room for something else.

We weren’t really listening until we were. On the radio came a song I had never heard before. It was “Born at the Right Time” by Paul Simon. The words a balm to our soul:

“Never been lonely
Never been lied to
Never had to scuffle in fear
Nothing denied to
Born at the instant
The church bells chime
And the whole world whispering
Born at the right time”

Jason and I let those words wash over us while we wept. I had this clear vision of our son triumphantly walking across the stage at his high school graduation amidst cheers. It was the closest things to an out-of-body experience that I’ve ever had. 

I have never heard that song again. 

As the days and weeks and months shifted into years, there were times I would come back to that moment when time stood still. I would think of that vision and feel that warmth but also began to feel like there was something missing. It took some time before I could name it. In my vision, I felt like those students were cheering for Ian… but were they also cheering with him? 

Because that was what I wanted for him. Friends. True friends to live life with. The kind of friends that make life sweeter, less hard, more meaningful. It is hard to long for something like that for your child because you have absolutely no control over it. Putting your child’s heart in the hands of others. But the joy when it happens… that is hard to put into words. 

Today, I got to see it. Ian and his friends. True friends. The kind that make life sweeter, less hard, more meaningful. And that makes my life sweeter, less hard, more meaningful.

Around this time of year, my mind often drifts to that beige room when I was scared to leave and couldn’t wait to leave. Our tears, that song and its truth and how it pushed out the fear… “the whole world whispering born at the right time.” 

There is only warmth.

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Progress.

Being in this sacred place gives me space to breathe. Life’s toils are pushed away in all directions. A sweep of my arms and… whoosh. They are waiting for me, but for now they’re on the fringes. Far enough away that for a time, I can truly see what’s right in front of me.

On our first morning here, I looked down the beach and saw Jason and Buddy returning from their morning walk. Ian was up by then and we began walking on the long boardwalk to them. Then Ian grabbed the railings, quickly hopped down the stairs and ran towards them. Buddy, in his perfect love of Ian, took off running for a reunion that appeared months in the making when they had just been separated by a good night’s sleep. The love of a dog. 

I captured this reunion on video and when watching it, I was struck not just by their deep, unconditional love but by how easily Ian bounded down those stairs. That was a skill – going up and down the stairs alternating his feet – that we worked on for what seemed like years. It started with him learning to pull himself up and crawl up the stairs, always mindful that he was using both legs equally so one did not become stronger than the other. Supporting the way he would crawl up and down the stairs to make sure his form was correct. Celebrating every single step, literally and figuratively. I remember he would stop midway up the stairs, turn and clap for himself. And oh, how we would rejoice! 

When it was time to move from crawling to walking, Jason installed a handrail below the main one on our stairs. You can still see it in the Christmas morning photo of our boys. (I don’t know that I can ever bear to remove it.) Ian used that handrail for years as we spotted, corrected and cheered him on. “Left, right, left, right.” Gentle cuing to alternate his feet. And after all of this, all of this time… years. He did it. He did it!

I had not thought much about all those years of working to walk up and down the stairs like that until yesterday. When I saw him racing down the stairs alternating his feet before they hit the sand and he ran. All that work, the focus of so much of your life, and then you all but forget about it. You hit the milestone and then head right towards the next one. 

Maybe that is how it should be, or at least how life just is? You work and work and work, cheering yourself along the way, and then you get there and you are on to what’s next. That’s progress, how we keep moving forward. But the work and greatest reward are in all the steps to get there, to get to that finish line. 

I think this hits me harder now because I still feel so stuck, nearly two years into the pandemic. I deeply grieve the life I used to have. Easy hugs, a cup of coffee, making plans. Going and doing without the worry, the wondering, the risk analysis. I guess I don’t see much progress in these past two years. Just making it through. Day in, day out. Doing what’s best for my family. Ian’s academic and social needs balanced with his medical ones, Joey’s growth into a young man and moving toward the next season of his life, Jason’s balancing of so many responsibilities, me keeping it all afloat. It feels heavy. Or maybe it’s that carrying the same burden feels heavy the longer you carry it. 

Here we are, almost two years into all of our lives being upended. No matter your risk tolerance, no one’s life is what it was two years ago. But maybe our progress is in the persevering? In the getting up and doing, day in and day out.

We are all doing the best we can. But oh, how I long for the worries of my old life. Can you imagine when we truly get there? (Because we will get there.) There will be that time, far in the future, when we see ourselves giving hugs and making plans without worry. And just like Ian bounding down those stairs, we will have to remind ourselves of how far we came. That we did it.

In the meantime, when you’re climbing those stairs, take a break in the middle and clap for yourself. Because, for as hard as it is, you’re doing it. We all are.

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The Weight of Worry and the Sunrise

Even in this beautiful place at the ends of the earth, I cannot escape the crushing worry that steals my sleep.


I get up every morning to watch the sunrise. It’s my favorite part of the day down here. There’s only a handful of people that I can see, so far away that they look like they’re meant to be a part of the landscape to make it even more beautiful. A smattering of people dotting the beach. They’re likely just like me, seeking solace in this time and space.


The closer we get to the start of the school year, the heavier the worry feels. Worry is no stranger to moms of kids with disabilities. I think it becomes our constant companion, sometimes making itself known in tangible ways… lost sleep and a heaviness that weighs you down even if you can’t hold it in your hands. Other times it’s like a tickle, this vague, nagging feeling that you forgot something, until you again remember what you should be worrying about.


Questioning myself always. Medical worries, school worries. Projecting into the future. Will he have a girlfriend, get married? The rich, meaningful adult life that he wants? That we want for him? Will others see him the way we see him? What happens when we’re gone? Why is he always so tired? Do we do another sleep study? Change the CPAP mask and pressure settings? Will this be the year that his heart valve leakage gets worse and he needs that second open heart surgery? How’s his hearing? Does he need ear tubes again? Can I find a gluten-free restaurant where we’re going? Did I grab a gluten-free roll? Where is the darn prescription for his new glasses? Should I get him one pair or two? Will he make new friends in middle school? Will someone want to eat lunch with him or walk to class with him? Will he be seen as a middle schooler, or a kid with Down syndrome? These were all my worries before Covid.


So much worry that it’s woven into the fabric of who I’ve become as a mom, as a person. It extends to Joey in all ways too… but not in any ways he would want me to share in this space.


I’m used to this. It’s a privilege to be Ian’s mom, to love him. To raise this young man who shatters stereotypes and is fully, completely, confidently who he is. Who doesn’t worry about anything, never questions himself. He just gets out there and does it. He has challenged every idea I ever had of humanness and growth and the meaning of all of this.


But heading into this school year, with everything feeling so much harder than it’s been since the start of the pandemic, is a new kind of worry. As moms of kids with disabilities can relate, we’re used to having to rely upon others to see our kids as capable, as worth the extra work. But this time, we’re also relying on others to keep them safe. Before we could fight for our kids; now we just pray. And hope. Talk to our doctors. All the specialists. More than once. Talk with each other, bond over our shared worry. And then pray and hope some more. Because if we get this wrong, it can go really wrong.


I cannot tell you the immense gratitude I have that our family is fully vaccinated. While we’re still so careful, it’s opened our world again and been the balm to the hurt of the past year. But then the worry sets in… did Ian mount enough of an immune response? I scour his old lab work where we checked his response to other childhood vaccines. Look at the patterns of his persistently low white blood cell count. Agonize over his low lymphocytes, the largest amount of while blood cells we have, and realize he’s never been in the “normal” range. Analyze patterns of his neutrophil counts. Worry about breakthrough infections because everything is so bad right now. What would that look like in someone with Down syndrome, with all his medical needs? I already know of the poor outcomes of people with Down syndrome who got Covid before vaccines and, presumably, better treatment. I talk with our immunologist… virtual visits and My Chart messages. Asking about all the what-if’s.


Oh, those what-if’s. Will everyone wear masks? What if they don’t? Will there be distance? Ventilation? Open windows? What mask to wear? What do I do about lunch? Our cafeteria isn’t connected to the outside for fresh air. Can Ian safely eat with a friend? What if he cannot? (Ian thrived with virtual learning but every time you ask him the hardest part, he will say one thing — his friends.) Am I doing the right thing for my child? The best thing? And don’t get me started on how I worry that Jason, Joey and I are doing the right thing…


All the questions. Seeking a peace I will not find. It’s exhausting. I do try to compartmentalize and tuck my worries in a box up on a shelf in the closet. And down here, it’s been easier to do that, to find long moments of time and space to exhale and clear my mind. But eventually that box will fall off the shelf and spill open.


So I go back to the sunrise. Every time I watch it, I inevitably think, “it’s actually me that’s moving.” The earth, slowly spinning, giving us glimpses of its beauty. I know this too shall pass. We keep moving. Forward. Slowly but forward. We will get there. But right now, I’m stuck in this incredibly vulnerable spot where no decision feels like the right one.

Stuck. Vulnerable. Exhausted.


This photo doesn’t capture the true beauty of the sunrise and my words feel similarly inadequate. But just like the camera on my phone, I’m doing the best I can. I think. I hope. Fellow moms carrying this weight, I’m carrying it too. You are not alone.

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Love grows.

Not too long ago, my days were filled with our boys’ love of each other. Their love was not only abundantly overflowing but also on full display. This sweet, innocent, pure love that showed me what unconditional love looked like.

I treasured those early days of that pure love. It anchored our boys to each other. I just knew they would never be alone because they would always have each other.

Now they’re a typical pair of teen brothers, a gift in its own right. Each growing in their own way, seeking independence. Becoming self-reliant. At times annoying each other. Hanging out. Togetherness. Shared experiences. Travel, baseball games, dinners. And at the same time, making their own way.

Not-so-subtle shifts. Signals that life-as-we-know-it has a shelf life.

Which makes me think back to those baby days when their outright expressions of love flowed freely. I remember watching them at the kitchen table, bathed in the morning sunlight. I felt warm and fuzzy and like everything was going to be alright. That they would always have each other.

Things change. Expressions of love change too. Grows in new ways. Like on this trip.

Slippery Rock is where you scoot and then slide down this flat rock with run-off from the mountain until you’re dumped into ice cold water that was over Ian’s head. Joey comes down first, turns around and waits. I’m standing off on the sidelines, where I find myself more and more nowadays as our boys grow and figure things out. Then Ian comes down, plunges into the water, pops up and there’s Joey. Telling Ian to grab onto his back as he gets them both to safe ground. Unconditional love if I’ve ever seen it.

And in that moment, I felt warm and fuzzy and like everything was going to be alright.

They will always have each other.

Continue reading “Love grows.”
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The End of Endless Summers

There was a time when summer days stretched before me. Hours and hours to fill. Playdates, going to the pool, knowing every playground around, packing snacks, lunches, and sippy cups, putting on sunscreen, eyes on my kids at all times. Each day was wide open and simultaneously full. I was tired each night in that way that comes from being everything to my kids. That deep, physical tired that allowed me to sink into my bed each night and go right to sleep and wake up the next morning thinking, “What are we going to do today?” I had years of summers like that. Where one summer day felt like the last one and the one to come tomorrow. Just the boys and me, with me at the center coordinating it all and them along for the ride. A very sweet spot. I somehow never thought those days had an expiration date because they seemed endless.

This summer has been nothing like the summers of the past 15 years. Gone are those endless days of togetherness, the ones that were exhausting and ran together, one into the other. Joey has a part time job working at a baseball camp. He also started this strength and conditioning program four days a week. He finished driver’s ed and takes his learner’s permit test in two weeks. He is playing in a summer baseball league and has had up to 5 or 6 games a week. He makes plans with his friends without me. And I am the driver to all the things.

Each day starts with me thinking of where Joey needs to go and what time we need to leave and when I will have to come back and pick him up and what’s up next for today. There is no predictable rhythm this summer, but this summer is so very sweet. Because by next summer, he will be driving himself. That makes my eyes feel heavy as they fill with tears and my chest tightens.

You see, this likely is the last summer that Joey needs me as much. I feel him pulling away from my orbit and becoming his own star. And gosh, I am so proud and know this is how it is supposed to be and how very blessed that this is where he is right now. But that doesn’t mean that it doesn’t make me sentimental for those open, exhausting days of parenting.

I love being in the car with him, driving him places. I love our talks. Being the person to see him after his very first day of work or his first new workout. Or riding home together after a tough game. Helping him navigate it all. I just love having him sitting next to me, together, even when he’s quiet and on his phone.

I am feeling so many things so deeply nowadays. As any parent of a child with a disability knows, we have big dreams for our kids but also know that life is rarely a linear journey for our child with a disability. I recognize that some of the experiences I have with Joey, like teaching him to drive, may be the only time I ever get to experience that as a mom. And while we would never limit Ian and know he has big dreams for himself, knowing that we get to experience all of this with Joey makes it so much sweeter.

I just love being his mom. I love seeing who he is — this beautiful person who doesn’t even realize how beautiful he is. How he lives his life with this quiet confidence, thinking of others, accepting everyone for who they are. Being so very kind and a safe place for all.

This is where I am as a mom right now — in a very sweet spot. When I think back to how I dreamed this summer would be, I thought that our days would start with Ian, my fellow early bird, and I taking Buddy for a walk to each morning as we started our wide open days. We’ve only gone on one walk and that was rushed because I felt bad that we hadn’t gone on one yet and I had to leave in a few minutes to take Joey somewhere. I have let those morning walks go and have embraced my right now — hanging on to being so very important to our son. Because by next summer, it will all change. And that’s good and how it should be. But a part of me hurts even as I rejoice.

So I choose to rejoice in my right now. Driving and driving and talking and talking and being present for every single thing. Because it will never, ever be like this again. The endless summer of driving. I’ll take it.

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Middle school is coming… again.

As we ease into summer and begin to rest and recover from this past school year, I keep thinking about the next. A more typical school year for sure. And that makes my heart rejoice.

But it also makes it ache a bit.

As hard as the past 15 months have been, some things have been easier. I have had to worry less about many things. As the mom of a preteen with Down syndrome, it is no surprise that middle school can be the beginning of a hard season, as it is for many kids. Gone are the days of elementary school when everyone is together because, well, everyone is together. As it should, middle school brings growth in new ways and things change. And while he just finished 6th grade virtually, this fall will feel brand new. That makes me worry in a new way for my Ian.

Will he have a friend to walk with in the hallway? Someone who wants to walk with him? I am not concerned about him getting where he is going — I am worried about him getting there alone.

I think back to when Ian was just 24 hours old. A surprise birth diagnosis of Down syndrome, whisked off to the NICU, being diagnosed with a heart defect and being told he would need open heart surgery within weeks — all within 24 hours. After our visitors headed home for the day weary for us, we were left alone in the cool, dark corner of the NICU with curtains drawn around us with Ian on my chest. I whispered to Jason that if we could stay like this, the three of us tucked away in this little corner away from the world, we would be ok. I don’t think I had spoken a more pure truth in my entire life.

And I still feel this way during these times of transition when I am so scared for what comes next. If only we could be tucked away in the corner away from the rest of the world. Then we would be ok.

And even though we would be ok, that is all we would be — ok. Because that is pretty much what these past 15 months have been — us tucked away from the world. We were ok but not good. Or at least not as good as we would like to be.

Then, a perfectly time reminder today that I am not alone in all of this. I attended two sessions at the virtual National Down Syndrome Congress Convention. The incredible Terri Couwenhoven helping me navigate the world of dating and relationships as we support Ian having a life full of what we all want. Most importantly, giving him the dignity of a life of his own choosing. And a gentle reminder from her to have friendships in the inclusive world and also in our special needs community to make sure our kids have a big, safe place to land. So they are never alone.

Then wise words from Dr. Andrew McCormick on planning our kids’ transition into the adult world. Intentionally planning and empowering, but not doing it alone. That instead of using the word “disability” we should focus on diversity. That people with disabilities — and all of us — contribute to the diversity of the human condition. I love that because, at least to me, the word “disability” feels like a negative. Or maybe it is seen by others as a negative — that disability is synonymous with being seen as incapable.

He focused on bringing value. He shared how text messages were actually developed by the deaf community to support their ability to communicate. And that brought value to all of us. How we need to work together to help our kids get to an adulthood where who they are brings value to all of us.

Isn’t that how it should be? That each of us brings value to others?

Big emotions and ideas and dreams today — a meaningful adulthood, a partner, empowered to have the life he wants. It starts today, really. I know that. Day by day, month by month, year by year. But the mom in me wants to know that her boy will have friends to eat lunch with in the fall. That he will never feel like he does not belong. That he will never feel “less.”

And I know that being tucked in that corner is safer. That we would be ok. But I also know that that is all we would be — ok. And I want more than ok for Ian.

It will not be easy for Ian. It is not easy for many kids, or many of us really. But I think the difference when you have a child with Down syndrome is that you KNOW some things will be harder, that some things will be different. And gosh, how you wish it wasn’t so because your kid is simply one of the best people you know.

But part of the dignity of a life of Ian’s own choosing is navigating all of it, the good and bad. But never doing it alone. Middle school is coming again and I need to remind myself… I do not want ok. I want good. And that usually comes with some hard.

We will get there. Well, Ian is always ready. It’s me who needs to get there. But first, summer.

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Towards the Light

Monday will mark twelve years since my life was cracked open. When the ground beneath me swallowed me without warning, without a moment’s thought of what that buckling would do to me. To us. To our family.

I was so foolish back then. Thinking I could control everything. Organized, plans, and back up plans.

Go to the hospital. Have another baby. Go home. Remember what sleep deprivation feels like. Adjust to life with two little ones.

My first inkling that things weren’t going according to my plan was when Ian decided to come early. I was supposed to have a May baby. Yet here I was in early April, not ready, in labor and delivery. One hour into Easter Sunday, I birthed this soul who would be my own rebirth.

Only whispers, no words of congratulations. Everyone huddling around my baby. I was so disconnected from that moment, watching myself. Jason emerged from that huddle, the truth written all over his face, even as he told me nothing is wrong.

Me literally crying out, “Will someone please tell me what’s going on?” Then those two little words: “Down syndrome.”

An hour later, Ian turns dusky and off to the NICU he goes. Jason crawls into bed with me in my recovery room and we whisper. In comes the doctor and a resident. I will never forget the resident, a young man with red hair. I often times wonder what he saw in the moment. Two young parents clinging to each other in a hospital bed as their world was crumbing around them.

I will also never forget when he told us that Ian had a heart murmur, how he wasn’t sure that he had Down syndrome until he heard his heart. And then he knew. I don’t even know what we said. I do know we never saw him again. They walked out and we were all alone in the darkness.

I remember later that day going into the NICU, seeing Ian under an oxygen hood and being asked if I wanted to hold him. It took two people to gather up my baby and all of his wires and put him in my arms. And I tried so hard not to cry in front of all these people but I couldn’t, all those emotions came pouring out. I cried for him, for me, for Jason, for Joey, for everyone who loved us. For all the rest of my days, this will be the dividing line of my life. Before and after.

I took a break from visiting him in the NICU, walked out of those doors and took a deep breath. I am not sure if it helped but breathing the air outside of the NICU somehow felt different, maybe not as heavy? Then the nurse practitioner finds me and Jason and ushers us into a Family Room, holding the door open with a “Your Child Has a Congenital Heart Defect” booklet in her hand. She goes on to describe his broken heart and the open heart surgery to come. I glanced at the clock on the wall. It was 9:00pm. I looked over at Jason and said, “How your life can change in 24 hours.”

A few days later we came home and our baby stayed in the NICU. I still remember driving up and seeing this big, beautiful basket filled with spring bulbs sitting on our front porch. It was from my parents and the card was filled with words congratulating us on Ian’s birth. Shamefully I felt as if we had nothing to celebrate. I carry the weight of that shame to this day. I put that basket on the counter and the aroma of those flowers filled the kitchen. I couldn’t even look at them but I could smell them. A reminder of how everything had changed. At some point, Jason planted those bulbs out front, deep into the ground.

The next day Ian came home. And it turns out, I did go to the hospital to have a baby. I quickly remembered what sleep deprivation felt like. I adjusted to being the mom of two kids. Joey’s deep love of Ian and seeing their bond grow meant there were actually some times that I didn’t think about Down syndrome.

It was love that sustained me, that still sustains me. The love of my boys, my family and friends. The deep love I had for this precious soul — he was my baby. And I have said it before — but the deepest truth in this entire journey is that I never had a baby with Down syndrome. I had Ian.

There was hard stuff too, of course. Stuff I had never done before. Time when I felt so alone and lost. So much therapy, Infants and Toddlers, PT, OT, speech, IFSPs, IEPs, assessments and more assessments, assessment reports, IEP meetings, doctor appointment after doctor appointment, open heart surgery, advocating, so much worry. But there was also progress.

Progress for all of us. Every year after Jason planted those bulbs, I’ve watched and waited for them to push out of the darkness and into the light. Seeing the peeks of green growth and the sunshine pulling them up, their pedals stretching and opening. Those flowers blooming at this time each year are a reminder that I can do hard things, a reminder that I have grown too.

Well, this year was different. I didn’t keep watch. I didn’t feel like I needed to. One day, I just looked over and there they were. Tall and strong.

I used to need to watch every step of their growth — my annual cleansing. To remember where those bulbs started, how they were plunged into darkness and clawed their way out towards the sun. It was a metaphor for me — clawing my own way out of the darkness. But now, nearly 12 years into this journey, I am living in the light.

There are moments of hard, moments of darkness. But the hard is never, ever Ian. I’ve always said the hardest part of raising a child with Down syndrome is not my son with Down syndrome — it is everyone else. Barriers for no reason other than that’s the way things have always been done. Outdated stereotypes — both that he is an “angel” or inherently incapable because of that extra chromosome. Limitations based upon others not seeing my son as just like them — a deep, complex person trying to figure out and enjoy life, just like the rest of us.

I allow myself some time to wallow in that darkness, in that sacred space where my foundation is shaky. I let myself feel those deep feelings of fear and anger and worry and exhaustion, then take a breath, lean on those who love me, and climb out. Towards that sun. Sharing his truth and shouting his worth. And lately, letting him do his own truth-telling and worth-shouting.

Growth comes in many forms. I used to need that reminder of my brokenness to see how far I have come. Now I just look at my son. Because that baby cracked my world right open and it was only he who could fill it back up. The one who saved me when I didn’t even know I needed to be saved.

Happy 12th birthday to my Ian!

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Our Community

Jason and I attended two Down syndrome webinars yesterday given by the wonderful Dr. Brian Skotko. Conversations on a whole list of medical concerns well-known in our community… Alzheimer’s, nutrition, thyroid, mental wellness, celiac disease, leukemia, spinal instability, just to name a few. And, of course, puberty and Covid.

As I sat there taking notes, it struck me. Way back in the beginning, this would have felt so overwhelming. So much information. So much to think about, to do, to worry about. But I realized I am at the point in my journey of being Ian’s mom that I really don’t think about Down syndrome that much. This was the first time that I had solely focused on Down syndrome in a long time. Sure, it is always there but it is not front and center. Down syndrome is a part of who Ian is, but who he is is more than the picture a diagnosis paints.

I looked at Dr. Skotko’s list of potential medical issues and realized that we have addressed many of those already with our doctors. And for some of them, we’ve walked down well-worn paths, like open heart surgery, celiac disease and, now, puberty.

But the key here is “well-worn paths.” It has never been alone. We have never been alone. Our incredible Down syndrome community shows up for each other time and time again.

Things feel so very hard when we feel alone. That’s when hopelessness creeps in. The fear seeps into those cracked pieces of our foundations, and anxiety soon follows to completely fill them up. We feel shaky and unsteady, scared and alone. Until you realize, you are not alone. We are not alone.

Knowing the depths of what he was sharing to keep our children with Down syndrome healthy, Dr. Skotko acknowledged how it feels to think about it all. And then told us, “Our community does the impossible on a weekly and daily basis.” I wrote that down word-for-word. We sure do. And not just our Down syndrome community but the entire special needs community. This community that has been one of the highlights of my life. How blessed are we? To be loved so deeply by family and friends and those who share this journey with us.

This afternoon our CDSPG family came together to cook a meal with a self-advocate leading the way in the kitchen. Tonight, we enjoyed a delicious meal of stuffed chicken breasts made by Ian. Eleven years ago I could not have imagined our son with Down syndrome making dinner for us. And now I dream of the day he has us over to his own apartment for a dinner he made. Peaks, valleys, flat roads. Sunny days and rainy ones. Those who love us and our beautiful community… they are here for all of it.

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Home.

I was in the garage this afternoon putting my shoes on, moments away from beginning a walk. I could feel the door open behind me. I already had my music going… the same song I’m writing this to. I needed this alone time today.

A busy morning of prepping, this day feeling so different. Because of the pandemic and also because it was 60 degrees on Thanksgiving. Through the open door emerges Ian, lips moving but I was already somewhere else in my head. I pull an AirPod out and hear him say, “I love you. I want to go on a walk with you.” I said, “sure” but truth be told, I begrudgingly agreed. I really wanted this time alone.

I turn off my music, grab a water bottle and we start walking. By the time we got around the corner, I was grinning. We were playing this game he made up, connecting in a way that only comes when there’s nothing else but each other. We walked throughout the neighborhood like that for a mile and a half. As we rounded the corner onto our street, he looks at me and, in all seriousness, says, “Race you!” I start laughing and he takes off.

We have been together for 258 days and this was as connected as I’ve felt in all those days. I need to do this more. I will do those more. Together without distractions. Just us.

And that song playing? “Home.” Sure, home is a place. But it is also Ian. And Joey. And Jason. And Buddy. For the past 258 days and when we’re again able to venture far, home will always be “wherever I am with you.”

In a year that feels like we’ve lost so much, we’ve really had it all all along.

Happy Thanksgiving to all.

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IEP Meetings

Ian’s IEP meeting was today. For years, I would walk out of that IEP room and walk as fast as I could to my car. Shuffling along with my head down, praying I wouldn’t see anyone. I would feverishly unlock my car door and pour myself in, slamming the door behind me.

Safe and out of sight, the tears would come. It is just so hard. Knowing that no matter how hard Ian works, no matter how hard I work, no matter how hard his team works, we will never, ever not sit around that table and talk about what he cannot do. There’s an emotion for that kind of despair but I’ve yet to name it.

The meetings where we hear formal assessment results and get grade levels for each and every aspect of his development are always the hardest. Your kid on paper, but reading that paper and not seeing your kid. And no matter how wonderful our wonderful team was, I would still sit in that car and weep.

Then shame would come. How could I sit here and cry about my son? He’s the hardest working kid I know, he’s up for any challenge, he’s fun and funny, he’s redefined everything I thought mattered. He is quite simply, as I often tell him, one of the best people I know.

It’s just hard.

A couple of years ago, Ian started joining us for his IEP meetings. He would share a PowerPoint that his wonderful elementary school special educator had him work on. He would tell us about his disability, what he’s good at, what helps him. He would sit at that table. Next to me.

And I started to notice, when I walked out of that room, I held my head up high. I would look at this kid walking right next to me, a reminder that he isn’t the sum of his struggles; none of us are. I no longer cried because I had him. We did this together.

Today, we had a wonderful IEP meeting. His first IEP meeting in middle school. His incredible team has gone above and beyond for our son. His amazing middle school special educator has worked tirelessly so our son is thriving during virtual learning in the middle of a pandemic. She shared all that he has achieved and all the ways he’s grown and all the ways he will grow. Ian shared his PowerPoint, what has been hard about virtual learning and what has helped him. All these people on that computer screen, here for our son. I think my favorite part of the entire meeting was when his special educator shared one of his comments in the chat — a bunch of emojis and “I am tired but I’m cool and I’m a rockstar.” Yes, he is.

Ok, I lied. That wasn’t my favorite part of the meeting. My favorite part was having Ian at the table, with us. Right next to me. My head was held high. And my only tears were ones of pride and thanks.