Category: Down syndrome

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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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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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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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“Down syndrome.”

Today marks the first day of Down Syndrome Awareness Month. In the beginning, I couldn’t even say those words. Because if I didn’t say them, maybe this wasn’t real. When I had to say them, I would speak them in shame. And I remember that I wouldn’t whisper because then I would’ve had to say them again, louder. I couldn’t bear to say those words more than I needed to.

And as soon as I would say it, my baby has Down syndrome, I would start crying. They would tell me they were sorry. Then I would feel this rage and shame and despair. Rage at them… how could they say that about my baby? Deep shame over my despair. Rage at myself for all of it. How did I expect them to react? Look at me, crying while holding this brand new life in my arms. A juxtaposition of deep pain and new life. I am exhausted just thinking of those times. I remember them like they were yesterday, and also feel like someone else lived them.

I can’t quite remember when the tide began to turn, when the sea began to recede and I started to see more solid ground under my feet. I imagine it happened slowly, as the tide goes. As times of grief and sorrow go. Little cracks filling up, becoming stronger. Feeling more sunlight than darkness. A slow return to life, where the hard loosens its grip so you can feel more than just anguish.

My precious gift of a baby brought me back to life all those years ago.

And now, here I am. From not being able to say the words “Down syndrome” to shouting them in celebration. Grateful for the life I have been given. Seeing things I never would have seen if I hadn’t been drowning. I found my way only because I was lost. Don’t get me wrong… things aren’t always easy. Because, well, that’s life. But I get my strength from the hard, from opening doors for my son and shouting his worth. And then watching him open his own doors and shouting his own worth.

For me, this is what Down Syndrome Awareness Month means. Showing people with Down syndrome living their lives. Lives filled with ups and downs, celebration and heartache. Working hard and being successful. Or not. Falling down, getting up. Sometimes things not working out. And that’s ok. Knowing that the love of those who love you will sustain you above all else. It is about people with Down syndrome living deep, rich, authentic lives, just like the rest of us. Being seen as a person who happens to have Down syndrome. Not a stereotype, but a person. Not a boy with Down syndrome, but Ian. The one who rescued me from the deep.

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The R-Word: Then It Became Personal

That’s so “retarded.” You’re such a “retard.” Retard… one of the few words that physically hurts me when I hear it. My heart aches; my stomach clenches; my eyes sting. It always takes a beat before it registers; did someone really just say that? As a special educator, I especially hated that word. Then 11 years ago, it became personal.

The time to give birth to our second son was here. I remember back to those days where my only worry was having 2 kids, and how I was going to be sleep deprived and still have to get my older son off to preschool. Even when I went into labor the day before Easter, I kept thinking, with a twinge of sadness, that our older son would celebrate Easter without us. Searching for eggs and his Easter basket… the rituals of the new beginnings that spring brings. Little did I know, the newest beginning of them all was nearly upon me.

As I lay on that table, exhausted from 32 hours of labor and 4 hours of pushing, I birthed our son into this world. And all I heard were whispers. All I saw was a bunch of people standing over our brand new son. My husband went over to meet our baby and came back to me and I will never, in all my days, forget the look on his face. I cannot describe it in words but it is etched into my memory. If I close my eyes, I can see his face so clearly… even he could not say the words to me. I begged him to tell me what was wrong and he kept telling me, “Nothing’s wrong… nothing’s wrong.” But his face told me he was lying. I think he was trying to protect me. Let me hang on to the last few seconds of thinking that my biggest worries were two kids, sleep deprivation and getting our older son off to preschool.

I finally cried out, “Will someone please tell me what’s going on?” And a nice NICU nurse came over and in a sing-song voice told me, “I feel like we’re talking to everybody else in the room but you!” I remember feeling so annoyed because she was so cavalier, like she was asking me if I’d like to go get a cup of coffee. I knew she was going to rock my word and here she was, so upbeat. Truth be told, I don’t think there would’ve been any right way to share that news but in that moment, the irony of upbeat and soul-crushing was too much to bear. Then she finally said the words, “Your baby has some markers that lead us to believe he has Down syndrome but we have to run some tests to be sure.” Someone finally said it. And I went numb. I think I said, “Ok, ok, ok…” about fifty times. A mantra of sorts. Ok, ok, ok. I couldn’t think, but I could feel. And all I felt was fear.

They told me our son had Down syndrome before I even held him. Before I even saw him. Did he have hair? Did he look like his brother? Was he short and chubby? Was he long and lean? Were his eyes closed or open, taking in the world? They handed me a diagnosis, and not my son.

All the fears, all the stereotypes, all the worries. What would his life be like? What would our life be like? What would this do to our older son? The unknown terrified me. I could only see Down syndrome. I could only see what I thought he would not be, what I thought he would not do.

And then, it seemed his birth day wasn’t done with me yet. His oxygen was low and he was taken to the NICU; they heard a heart murmur and ran some tests. When they escort you into the parent room, you know they’re going to rock your world again. And when the lady opening the door for you has a “Your Child Has a Congenital Heart Defect” booklet in her hand, you know that your life will never, ever be the same. Our son was not even 20 hours old when they told us he had 3 holes in his heart and something wrong with his valves and would need open heart surgery as a newborn. More fear.

I remember that night, sitting in the corner of the NICU, with the curtains drawn all around us, telling my husband, if we could stay like this — all of us tucked safely away from the world — that we would be ok. And it was in that moment, rocking our son in that safe little corner of the hospital that I saw him. Really saw our son.

Those hours gave way to days and weeks of getting to know him — Ian. As he began to unfold himself to us, I got to know our son. I would look at him and say, “You. Are. Ian.” I realized that I did not have a “baby with Down syndrome”… I had Ian. I could have never known in those early days that he would give my life even greater purpose, perhaps its greatest purpose.

He makes me want to move mountains for him, to show the world — HE IS IAN! He is fun and funny and smart and capable and loving and full of so much joy! He is not a label. He is not a stereotype. He is not defined by an extra chromosome. He is not scary.

But when people use the r-word, they instantly dehumanize our son. They make him a diagnosis… something scary, something to be afraid of, something different from them. I know that fear. I lived that fear in the beginning. And look at what I have now that I know him… I have Ian and all his glorious lessons on life and love and perseverance and what really, truly matters.

When people use the r-word, they make our Ian “less.” And when you do that, you miss out on meeting one of the most incredible people you’ll ever know. You miss out on seeing the person. What would happen if others started to see people, rather than a diagnosis? Rather than a stereotype? Rather than someone “different”? What would happen if people started seeing people for who they are and not for what others think they are not? Would they see a future co-worker? A friend? A classmate? A roommate? A neighbor?

Words matter. They have the power to uplift or crush. They can empower or dehumanize. They can instill confidence or fear. I know. Because the words “Down syndrome” brought me fear in the beginning. Until I saw our son, until I knew him. And when someone uses the r-word and makes him “less,” they miss out on his light. His light that illuminates all darkness; his light that has shown me the way. He makes everything wrong, right; makes everything sad, happy; makes everything hard, worth it. See his worth. See that words matter. See that words have power. See him. See our son. He is Ian.

Originally published at: https://www.bestbuddies.org/2018/04/26/thenitbecamepersonal-2/

Photo credit: Diana White Photography

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Memories: Going Into 3rd Grade

I created this sacred space as a place to share our journey. I am not sure just yet where it will take me. But as memories pop up, I see how far we’ve come and I want to tuck them into this space as well. Not just preserving them but also reminding me how much we’ve grown. Well, mostly how much I have grown. So from time to time, I plan to share what I said then and where we are now. Here goes…

Then: June 2017, Ian was 8, going into 3rd grade

Down syndrome and special needs friends, while I’ve been loving my week at Scout Camp with Ian, it’s also shown me that we may be at the point where we need to share with other kids more about his “disability.” He’s had a blast but there have been moments where kids have asked why he talks “funny” or that he should be more clear (right in front of him) or don’t have as much patience or understanding of why things may be different or harder for him. How did you all handle this phase of parenting?

When Ian was a newborn, I used to have a “speech” prepared when I had to share that Ian had DS so I could set the tone for how others saw my son. So I am wondering if I need to do that now? Then I was thinking that it is really Ian’s story to tell… maybe he needs to be the one to explain that he may need to repeat something or need a helping hand? Because after all, it IS his story.

And today he was really good about telling the kids that he goes to speech and OT over the summer and that he has speech at school and with Ms. Ahna. He shared how he’s working on speaking more clearly and slowing down. And one warm-hearted little guy even told him, “Ian, I went to speech too!”

But then I think maybe if we share about the DS first that kids will see him as “different”… but then they are already starting to see differences. Ugh. And I’ve also noticed this stuff lately in other unstructured social situations. But the one bright light I see with older kids is how much patience and empathy and understanding they have for kiddos who may need some extra help and that makes my heart soar for the future.

Sooooooo, this long post is to ask for advice… how do I help other kids see and accept what may be harder for Ian without making them see him as SO different? And in keeping it real, this hurts my momma heart so bad… a growing pain for sure. And this parenting gig, typically-developing or not, is HARD. But I also know that Ian’s light shines bright, he never gives up, never gets down, and moves onward and upward. And so we go…

(And this is Ian imitating Marv in “Home Alone” when he had the spider on his nose)

Now: June 2020, Ian is 11, going into 6th grade

That week was probably one of the most painful times I’ve had as Ian’s mom. I rode home in the front seat with tears silently streaming down my face, my boys unaware in the back seat. I felt a physical pain deep in my chest. I had blissfully existed in this world of inclusion and all of this was like a sucker punch. I was totally unprepared for that time when other kids saw Ian as “different.”

Throughout Ian’s lifetime, I have had to deal with comments, questions, and ignorance countless times. I have had to feel that pain of someone seeing my son as less, as different in a way that was not celebrated. But this was the first time that Ian had to endure that. That he had to answer those questions. That he felt different.

I learned a lot from that week, as we usually do from times that stretch us. I learned that around the end of 2nd grade and the beginning of 3rd grade is when kids start to notice “differences.” Their questions don’t arise from being hurtful but from just not knowing. I think sometimes we don’t talk about differences because we want kids to see each other as the same. But I think it ends up being confusing. Kids do see that someone is different from them but don’t understand what that means or why we don’t talk about it. So that wonder and confusion hangs out there, rather than acknowledging that we all want the same things… to be included, to belong. That we all want to be seen as equal regardless of our differences. I wish someone had told me that around age 8 is when kids start to notice and ask questions and that that is a perfect time to talk about the beauty of difference and diversity.

The best part, three years later, is that it is Ian who does the educating. He has done presentations at school for his class and other classes for the past three years. He has presented about Down syndrome to a football team and spoke about his dreams in front of over 400 people. He has become his own advocate… sharing about his extra chromosome and almond eyes and, of course, his love of Home Alone movies. Spreading the message that even though we are different, we are the same in all the ways that matter. Three years later, Ian has shown me that he’s got this. He found his own voice. And he keeps on moving onward and upward, taking me along with him.

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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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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.