Category: perspective

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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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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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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.

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My mom.

This year, 2020, has brought out a lot of things in all of us. Some good things. Growth. Inspiration. Gratitude. Togetherness. In equal measure, the opposite. Fear, anxiety. Longing, nostalgia. Anger, resignation. Exhaustion. A lot of hard. 

We know we can do hard things. But my mom? Well, she has always had to do hard things. Things she has no control over. But she never really sees it that way. Her perspective is who she is, and who she is is a gift. 

When I was a kid, I have these vague memories of something big happening in our house, with my mom. I don’t have any clear memories of when they told us, but I do remember standing in line at school holding a dictionary and looking it up. I held the dictionary up to my teacher and said my mom has this and pointed to the word “cancer.” That look on her face? I knew it was not good. Kind of a mix of shock and fear and sadness, feeling sorry for me, for what this meant. The year was 1983, before pink ribbons and hope. My mom had stage 3 breast cancer at the age of 36.  

She fought. For two years. Surgeries. Chemo every 3 weeks. She had this countdown of her chemo treatments from 18 to 0 on a piece of paper. It hung inside our kitchen cabinet until they remodeled the kitchen twenty years later. After each treatment, she crossed off a number. That last one, the zero, was really big. I knew we were going to make that zero a big smiley face when she got there. I now know that she wasn’t sure if she would get there. Stage 3 cancer in 1983 was especially scary.  

Well, she got there and decided not to stop. She had always wanted to be a teacher. So she did it. She went back to college in her late 30s, something unusual for those times. She became a teacher at 42. And even in the midst of all the good she was doing, she had more hard. Another cancer diagnosis when I was pregnant with Ian. She had another surgery and recovered. Then she would wake up every single day and drive to her radiation treatments and be in her classroom at the end of homeroom. Every single day for six weeks because in her words, “What am I going to do? Sit at home and think about it?” She retired at 66 and loved what she did. I think of how many hundreds of lives she impacted because she decided to take her hard and turn it into something really good.  

I didn’t know hard for a very long time. Honestly, it was not until I had Ian. Up to that point, my life was pretty smooth sailing. Bumps in the road that are typical of adolescence, none of it truly hard. Making my way through college and law school, working hard and getting things done. Not easy but not hard. But I thought it was. Perspective is a fickle thing. You only know what you know, and I thought I knew hard.  

Then came April 12th, 2009. The day we welcomed our second son. We had a plan. Two kids, about four years between them. Close enough for them to be close but far apart for us to really enjoy the stage they each were in. Foolish me, walking into the hospital thinking the only troubles awaiting me when I walked out were sleep deprivation and having to get Joey up and out to preschool. 

I gave birth to our Ian and the whispers of the nurses around him, that look of fear and despair on Jason’s face? For all my days, I will feel those first moments after Ian’s birth. My world was cracked right open.  

I remember our family streaming in and I wanted to tell everyone right away that Ian had Down syndrome. I didn’t want rejoicing and celebrating. I didn’t want them to feel like I had let them be happy too long before I took it all away. Oh, the shame I feel now, sitting here on this rainy Sunday morning as I look over at this precious soul… my Ian, my fellow early bird, enjoying some rare electronics time in the morning while I write. While I write about how I wept the day he was born.  

The juxtaposition of time and perspective. How the hard might crack your world right open just to fill it back up, because it was so very empty, but you didn’t even know it.  

In all those faces, I kept looking for my mom. I was holding Ian in my arms but I didn’t even feel him. I didn’t even feel myself. She came to my side and I blurted out, “They think he has Down syndrome.” I said it, let that truth out into the universe.  

I now knew hard.  

I looked up at my mom and pleaded with her, “What am I going to do?” She looked down at me and simply said, “You love him.” So I did. Ian has no greater cheerleader than my mom. She loves every ounce of who he is. To her, he has always been perfect.  

I was not on the same journey as my mom but many of my feelings after I had Ian were the same. All that uncertainty. I was a planner and all of a sudden, I couldn’t plan for anything. I couldn’t plan for the future, for what his childhood would look like. Would he have friends, a girlfriend? Would we ever travel again? Go out to eat? Would he smile at me? Call me “mom”? What would his life look like as an adult? When we were gone? I was consumed with grief and anxiety. Googling “Down syndrome” back then and finding no hope. I couldn’t help myself and wasn’t helping myself.  

And then there was my mom. Her advice, what she told herself when she had cancer when we were little kids, “You need to take it one day at a time.” She reminded me that all I could control was today and I could do this today. In the beginning it was like a prayer I would whisper when I was drowning, “One day at a time, one day at a time, one day at a time…” until it became my mantra. 

A little further along in my journey of being Ian’s mom it was time to do his assessments to see how he was developing. My baby was one-year-old and they were assessing him. I know why, but it just hurts so much. How many words can he can say? What sounds does he make? Does he stack two blocks, three blocks, four? If they fall down, does he put them back up? Can he roll over, sit up? Feed himself? Does he pass an object from one hand to the other? Important information for his development and crushing my mama heart, all at the same time. I got a list of his developmental “ages” for his gross motor, fine motor, speech, academic and social emotional skills. I called my mom when his teacher left our house because it was just so hard. It is soul-crushing to see your child on paper like that. (It still is.) And she told me, through my despair, “Listen to me. It is a privilege to be his mom. You need to remember that.” Oh, the balm for my soul. It IS a privilege to be his mom. She always knows what to say.  

Recently my mom has faced some new challenges. Another breast cancer diagnosis. This time, caught very early. She had surgery right before Covid. Then was recovering during Covid. Then had another surgery last week. And then this week, a bout of vomiting from the damage she had from her radiation treatment a decade ago. Can you imagine, vomiting while recovering from surgery? I cry when I have the plain old stomach bug. But what did my mom do? She just did it. Held on, knowing that this too shall pass. Sometimes it takes a little longer, but it always does. And when she comes out on the other side, she celebrates it. A text this morning telling me she woke up feeling so much better. Never complaining, never shouting “it’s not fair!” (Because it isn’t fair.) Never asking why. Just making her way through the hard. Because that’s what she does. She does everything with the same grace. 

Yesterday the boys and I went for haircuts for the first time in six months. Oh, how I worried. For weeks and weeks, and the morning of. I walked into that salon trying to control my breathing, with tears filling my eyes. What if, what if, what if? We have lived the past 156 days sheltering in place, but that takes a toll too. Balance. Figuring things out. But I was still so scared. 

Before I walked in, my mom texted me and asked me to send ‘before and after’ pictures of our haircuts. I texted her back, telling her I was so nervous.  The calm in the storm, she tells me, “Lots of people have done this. We have to start… so start.” I texted back that I wondered if I was taking an unnecessary risk. And she gently reminded me again, “Laura, you have to begin, so do it.” And I did.  

Here we still are. In the middle of a storm. And my mom is here too, again. In the middle of more than one storm. I celebrate her and share her. Here, in this space. Because of who she is, how she lives her life, how she weathers storms. Grace. Acceptance. Calm. Optimism. Always knowing stormy seas do calm, sometimes just not when we want them to. But when they do, we will all feel so much better. And be better for having gone through the hard. One day at a time.

I love you, mom.  

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This too will end.

I’ve really been struggling lately. I usually fall hard into summer. Embrace the break for the blessing it is. Live our adventures with our family and friends and welcome the change of pace. I emerge on the other side renewed and inspired and ready for the new year. September has always been my New Year.

And I know it’s a hard time to be a lot of things right about now. But it’s really a hard time to be an educator. As a teacher, I know so much has been written about what we are living through. It makes me ache, feel vulnerable. So many emotions and truth be told, not a lot of them fill my cup. I am just so tired.

As we inch closer to the start of school, I am feeling a slight shift. In “normal” years, I would be fighting it, hanging on to making summer memories, knowing that this summer won’t ever happen again. That this summer is one year closer to Joey going off into the world, our family of four forever changed. But this summer? Well, nothing is “normal” about this summer. So I guess it’s normal to feel the way I do.

Jason and I sat down last night and planned out what we think our school days will look like… what time we should get up and go to bed, what time to go for a walk or a run, scheduling playtime for the dogs and walks as a family, time for fresh air and sunshine, time away from a screen and sitting. Dreaming of new routines and rituals, the change of seasons. Crisp air, falling leaves, fires. Maybe even some football. A shift in more ways than one. Afterwards, I felt some of my unease ebb, a little less uncertainty I suppose.

Don’t get me wrong. I grieve hard for what we don’t have but I am also so excited for all the ways we will grow this school year. It isn’t ideal — none of this is ideal. But here we are. And I am not going to waste this time. I think we can simultaneously struggle and grow, right?

Because I am ready to keep growing in ways I wouldn’t have been able to — as a mom, a wife, an educator. As a woman who, soon enough, will have a life that doesn’t revolve around her children. Joey gone to college and if he has his way, Ian off to college too. The center of my universe will shift and I need to be ready for that.

A lot of growing. And a lot of reminding that this too will end. This too will end. This too will end.

And sometimes I have the gift of gentle reminders to nudge me onward and upward. Like this photo that popped up in my memories today. Of me singing to Ian while he was sedated and on a ventilator after his open heart surgery. Having to stop singing to him because his heart was racing and it needed to rest. Willing him to know that I was right there… that I will always be right there, even if he cannot hear me or see me or feel me.

A gentle reminder that that time of our life did, indeed, end. And that we are better for having walked that path. I would have never chosen it — open heart surgery in all its helplessness. But I am better for having walked through it.

Just like these times. None of us would have chosen this. But here we are. This too will end. And while we would have never chosen the path we’re on, we will all be better for it. Because there are some things you only learn when you live through the hard.

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This Summer

I was talking to my mom today about this summer and how we’re officially halfway through break. And we agreed that, for lack of a more eloquent term, this summer has sucked. A part of me feels guilty for feeling that way — we’re healthy, have a home and food, and people who love us. How can I feel bad that our summer isn’t filled with our usual adventures and all those things that make summer sweet? It’s a loss, for sure, but in the grand scheme of things, we’re good.

And leave it to memories to give me perspective. This is one of my most favorite photos of Ian and me. It was taken 11 years ago just days before his open heart surgery at 3 months of age. Before we embarked on a journey where our baby surviving the surgery was the easiest part. His chest that couldn’t be closed, a pacemaker, pulmonary hypertensive crises, chest and lung infections, couldn’t get him off the ventilator. Ian hearing me singing to him and having his heart race and having to be sedated to let his heart heal. So much hard.

THAT summer sucked. This summer just isn’t what we expected it to be. It’s ok to grieve that. But I’ll take this summer over that summer any day.

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What We’ve Lost

The rhythm of life feels different these days. Time has felt like it stands still. And then it speeds up. And then slows again. Endless days and weeks of sameness. At the same time, we’ve had an opportunity to focus on things we haven’t had time for. Some days productive, some not. Some days guilt-ridden for feeling like we’re wasting this time, the gift of these days. Or guilt-ridden for struggling when we’re ok. Or are we even ok? Some days yes, other days maybe not so much. Everything is the same but at the same time, everything is so very different.

The impact of this time will be unique for each of us. Did we just survive? Did we do ok? Did we end up thriving? No answer is right or wrong. We all do hard things differently. I do know I have been ok because of the people who love me. Leaning when I need to lean and offering that same grace. The ebb and flow of human connection, often at its most beautiful when things are hard. We will be ok together.

And if this isn’t the time to thrive, maybe the thriving will come after we return to our old lives? You know that saying “you never know what you have until it’s gone?” We all feel that now. I particularly felt the depth of that loss yesterday. I had a socially-distanced, masks on, outdoor meeting for Best Buddies. I set an alarm, got up and showered, got dressed in something other than lounge pants, blew dried my hair, put on a little make up, grabbed a granola bar and coffee and rushed out the door. And honestly, I had not felt that alive in a long time. I didn’t realize how much I missed all of this until I fought rush hour traffic, drank my coffee and saw my reflection in the mirror with some lipgloss on.

Was it because it was my old routine? Because a morning like that signaled a productive day? A chance to connect and do something I loved? A reminder of what used to be? Today I settled back into quarantine life. And that was ok too. Because I had that glimpse of “before” and what will be again.

I know I didn’t know what I had until it was gone. But I actually think author Clarissa Wild said it even better when she said, “People say you don’t know what you’ve got until it’s gone. Truth is, you knew what you had, you just never thought you’d lose it.” I think that is one of the greatest truths I’ve ever read. We never thought we would lose this.

I think we all expect to experience big losses at some point. The loss of love, the loss of life, the loss of security. An unexpected diagnosis or news that changes everything. Those soul-shattering times with a hard dividing line of your life “before” and “after.” And we are terrified of those big losses, knowing the deep grief and struggle and irreparability of life “after.” They change the lens through which we forever look at life.

But this? Not being able to run out the door with your coffee and fight rush hour traffic to get to work? Getting our kids up and fed and tucked safely on a school bus? Rushing home to make dinner and rushing back out to sports or scouts or dance? Going to baseball games and concerts or out to dinner? Shaking a hand or giving someone a hug? We never thought we would lose this. And yet here we are. Grieving. Growing. Being ok. And sometimes not ok. And it’s all ok.

The thriving has to come when we’re on the other side of this, doesn’t it? When we appreciate the rushing. When we appreciate the fullness of our lives. I think it has to. Because we know what we had. And we now how it feels to lose it.

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Sweet Memories in Quarantine

May this be one of the sweetest memories I have of this time in quarantine. Every weekend morning, I peek outside our bedroom window and see this. Jason and Ian on the deck. Jason with his coffee, Ian setting up Connect Four. And they sit and play while Joey is sleeping and I get my own cup of coffee.

Usually our mornings would be filled with getting ready to go, packing up for what the day has in store. I do feel that we are missing out on so much living right now. The joy of being and doing and connecting. Being carefree about just being with others. But I know that I am not ready for that yet. That I could not feel carefree right now. Masks and outside and 6 feet are the best I can do.

Because I am still scared. Of one of us getting sick. Of someone I love getting sick. Of Ian being high risk. Of knowing what the worst case scenario looks like. I have said it before but we know what it looks like to see your kid in the intensive care unit on a ventilator.

So home is where we stay. Our home that now has an even deeper meaning for us. It will forever be our safest place. So until we can embrace our old life with all its joy and connection and hugs, we continue to shift our focus, embracing this precious gift of time. Our Saturday mornings on the deck, drinking coffee and playing Connect Four.

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Home Alone

I did it. Well, Ian did it. He stayed home alone for the first time today. It was only for about fifteen minutes and part of it was spent reading a book over FaceTime with Grammy. But he did it. He stayed home alone while Joey and I took the dogs for a walk.

When I think about all the big dreams I have for Ian, what I want most of all is a life of his own choosing. Because isn’t that the pinnacle of adulthood? Making your own choices? But those big dreams don’t just happen. Like everything else, it starts with a baby step. And then another one. And another one. And if I want this kid to live on his own, he has to learn how to be alone. So today, he did it. For 15 minutes. But he did it.

I find my growth as Ian’s mom has sometimes been linear and predictable, and at other times I am stretched. I treasure linear and predictable for the gift they are. Those times of being stretched are often painful, mostly when I am battling ignorance and stereotypes defining my son rather than him defining himself, when I need to push back against what the world sees as his ability and worth.

But as he gets older, I am finding that I need to be stretched in different ways too. That it is me who needs to let him go do, to figure things out, to create the life he wants for himself. Fellow mom and incredible advocate Beth Foraker shared the perfect term for this at last year’s National Down Syndrome Congress Convention – giving my son “the dignity of risk.” I have carried that with me, that reminder that he deserves that opportunity. And I need to be the one to give it to him.

So that’s what we did today. He stayed home alone. And do you know what the best part was? When he was done reading with Grammy, he snuck his Nintendo Switch. When we returned from walking the dogs, I crept in to see what he was doing and snapped this photo. Isn’t that one of the best parts of independence, being able to do what you want? He was home alone and wanted to play video games, so that’s what he did.

Home alone. A baby step, more for me than Ian. The dignity of risk. And the reward too.

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Saying Goodbye When You Can’t Say Goodbye

Tomorrow is Ian’s last day of elementary school. He has been a part of his school community since he was 3 years old. Our school has lovingly guided Ian (and me) onward and upward for nearly 8 years. And tomorrow, with no pomp and circumstance, with no culminating event, it is just over.

Not only do we not get to say goodbye to the only school we’ve ever known, Ian’s best friend and most favorite person in the whole world is headed to a different middle school. They have been together for 6 years, every single day. They have a bond that feels heaven sent. I know it is an answer to my prayer. A very best friend. We have known this day was coming, these boys going to a different middle school. But I think somehow I believed it wouldn’t really happen, that it couldn’t happen. Maybe because it seemed so far away that it just didn’t seem possible. But tomorrow, that day is here.

Change and loss. Change always comes with a loss, for the new only comes when the old is shed. But this time, the change seems to feel more profound because of the loss of goodbye.

When it became increasingly clear that this was how our year would end, I wondered if maybe this would be easier. No rituals of goodbye reminding me of what I was losing. I thought that not being able to say goodbye would be better. And maybe it is. To just have something end. To not have to be reminded in a big way of what a big loss this is – friends, security, home. But now I am not so sure about that. I am not sure about any of this.

Because here I sit, alone on my deck with all these feelings and nowhere to put them except on this page. I can’t look into the faces of the people who have changed by son’s life and thank them for that. I can’t look into their eyes and thank them for making my dreams for our son come true. To remind them that their hard work is the reason he is thriving. That I will forever be grateful that they made me feel safe and secure sending my son to school, knowing he was loved and challenged and valued. I can’t say any of this to the people who helped build the foundation of my son’s life. It is just over.

Now it is time for me to start over. And that is hard and scary. New relationships. New beginnings. When I didn’t even have an ending. When we didn’t even get to say goodbye.

I just want my son to be happy. I want my son to have friends. I want my son to belong. I want my son to be surrounded by people who want to be around him. I want my son to be around people who see his light. Because we had that – all of that. And that is so very hard to let go of. I don’t want him to be seen as a little boy with Down syndrome. I want them to see Ian.

So here I still sit, with all these feelings. And I honestly don’t know how to feel. I just know that I feel a lot. This past week, as we have virtually said goodbye, I know Ian is feeling it too – all these feelings with no names. I know he feels this great loss. And when it became too much and I could feel its weight, I just asked Ian if he wanted a hug. So that’s what we did. A long, silent hug. A gentle exhale of emotion that lingered as we felt all of it together. And then we moved on. Until the next moment we needed a hug. Then exhale, move on, repeat. Together.

Tomorrow, we start over.