Category: future

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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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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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We are never alone.

When I first heard those two little words — “Down syndrome” — I felt everything and nothing at all, all the same time. All these emotions clumped together into this heaviness wrapped all around me. I felt disconnected from my body. I remember thinking that if that hospital was on fire, I physically wouldn’t be able to get out. Of all that I felt, the most profound feeling was feeling so very alone.

And now? Well, now I get to live a life full of full circle moments. From the depths of despair to the greatest joys. The gift of perspective and purpose. This view of life as the precious gift it is. The deep connection I have to others walking this journey with us… those whose lives changed like ours and those who’ve loved us through it and love our son just as fiercely. Family and friends like family before the diagnosis and friends like family because of the diagnosis. None of this would’ve happened without those two little words.

Thank you for always supporting us and loving the Dynamic Duo! Yesterday we couldn’t walk together because of a global pandemic. But we weren’t alone. We are never alone. Because of all of you.

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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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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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Adulthood. And a gentle push.

I spent three hours this afternoon in another wonderful “deep dive” session with Dr. Mary Morningstar and the National Down Syndrome Congress. This one focused on transitioning students from high school to adult lives, which is not only my professional passion but also a personal one. Transition into adulthood represents the culmination of over 13 years of hard work by families, teachers, service providers, support staff and, of course, the students themselves. It is the whole reason we do this work, day after day, year after year. Educators passing the baton as our kids grow. It is the finish line – what life looks like when all the hard work of school is done.

And while I learned about transition resources and ideas, I was unprepared for the one thing that I should have been prepared for – a mindset shift. I think of transition as my son transitioning into his adulthood but I was leaving out a very important term that Dr. Morningstar used often – an inclusive adulthood.

That struck me. Because sometimes I think I see Ian in his bubble, or maybe it’s my bubble. My quest as his mother to always protect him, especially because in some ways he is very vulnerable. Or maybe it’s me who is vulnerable? No matter whose bubble it is, I saw him in it. Safe. Structured. Ok.

Today made me really think of the future I imagine for Ian, the one I want for him and the one he wants for himself. The question is, had I really, truly thought about letting him live it? Dreams and reality intersecting can be really scary.

Dr. Morningstar shared a quote from two parents of a child with a disability about the importance of community and it resonated with me. Drs. Ferguson and Ferguson said, “The more hands there to catch him when he falls the better. We firmly believe that the more deeply embedded Ian is in the life of his neighborhood, workplace and the city in general, the more people there will be who will notice if he is not there and who will work to keep him there as a member of the community.” This speaks not only to their son and to my son, but to all of us. A sense of belonging and, conversely, a palpable void when we are not there.

I needed this nudge, this gentle push, this mindset shift. An inclusive adulthood. Ian, a thriving member of our community, valued and included. The way he is in school now. Expecting the same for him as an adult. Being vulnerable is a legitimate emotion, and so is fear. But they can also hold you back. And I won’t be the person who holds my son back. The more hands, the better. Now I just have to let go of Ian’s hand. I can do this. And so can he.

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Middle School

A memory popped up recently and it spoke to my heart as Ian gets ready for a big new phase in his life – middle school. He doesn’t see it the way I see it. He’s ready to rock it, like he does pretty much everything. But me, being older and wiser, I know that a seismic shift is about to happen. I just watched a video from last year when Ian won an award at school for exemplifying JOY and I love how everyone said his name in unison as it was announced. This sweet time in our life of elementary school, when inclusion often happens because everyone is always together, is coming to a close… and that makes me sad for more reasons than typical nostalgia at the passage of time.

We have Ian’s special ed extended planning meeting with his new middle school team coming up soon, to talk all things Ian and middle school. And when I asked Jason the most important concern he has about Ian in middle school, it was the exact same as mine – will he have friends? Will anyone want to sit at lunch with him? Will there be a kid who wants to sit with him because he’s a fun kid who is a great friend? Will there be someone who always makes sure he has a place at the table, who saves him a place at the table? Will there be someone to walk with him as he navigates the busy hallways? Will there be someone who waits with him as he figures out the fast-paced PE locker room? Will there be someone who looks out for him, because that’s what friends do? Will there be a Joey?

I am not worried about accommodations or IEP goals or 6th grade curriculum — I want my kid to have friends. Because THAT is the essence of humanity… connection. I want him to have a life outside of our family. I want him to have someone to text, someone to hang out with after school. I don’t want him to feel different. I don’t want him to be alone. I don’t want him to be lonely. I want him to have a friend. I want him to have a Joey.