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

There was only warmth.

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

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

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

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

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

I have never heard that song again. 

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

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

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

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

There is only warmth.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy 12^th birthday to my Ian!

I just finished an incredible two days at the Division on Career Development and Transition Virtual Conference. Whenever I have the opportunity to attend events like these, I always end the experience feeling so humbled, grateful and inspired. Fellow parents of kids with disabilities, there are SO MANY people fighting for our kids. They are doing research, creating websites and resources, developing projects, educating future teachers, changing perspectives in society, partnering with government agencies, inspiring teachers to inspire other teachers and opening doors. They have dedicated their lives — their entire lives — to our kids. Humbled, grateful and inspired.

Things are changing for our kids. And as with all change, it is never enough. It is certainly never fast enough. The work is never done. Things get better, and then want them to get ever better. To do more. And that’s how it should be. Never stagnant. Never standing still. Never settling.

As I sat in my quiet space in our bedroom these past two days, I would find myself looking out the window. Looking and thinking help me process things. I kept noticing how beautiful the leaves look, even the midst of their demise. And how with every breeze, they would shimmy down to the ground. And yet, there still were so many more leaves, hanging on, not ready to let go. I think that’s where we all are right now. Hanging on.

So many hard things. But so many equally hopeful things. Like what I experienced the last two days. All these great people doing great things so my kid can live a great life. Our closing keynote was given by the always incredible Dr. Mary Morningstar. She shared about a work entitled “No Body Left Behind” and from that, her advice for the future of the work we do in transition, but it applies to everything we do when change is needed. First, name it. What is holding us back? Then, dismantle it. Find allies and do the work. Last, dream it. Dream abundantly, expansively, collectively and unapologetically. As she reminded us, “all change is radical.”

As we go forth, especially into a winter that we all feel will be even harder, may we do the work that needs to be done. For us, for others. Name it; dismantle it, dream it. Cling to that branch and hang on. Because sometimes our greatest beauty is in the hanging on.

We lost our sweet girl yesterday. We had Sunny for 12 years and 8 months. We called her our sweet “lellow”, an homage to Ian who for a long time couldn’t say the y-sound. And it stuck… our sweet lellow girl. She passed away at home in one of her favorite spots, with us loving her until the end.

She was diagnosed with cancer at the beginning of the pandemic. She had a ping pong ball sized tumor on her spleen and a two-inch tumor on her heart. They gave her only weeks. It was the dead of winter – late March. I grieved hard then. (And honestly, have grieved every day since, knowing her fate.) But, she kept going. She eased us into the spring. The pandemic was robbing us of our lives before but she got us into the warmth and sunshine. Then into the summer. Being able to see her swim and enjoy life. And then, now, easing into the fall. She lived for 5 more months.

She was our constant. Ian came down this morning to a quiet house for the first time in his life; she used to pop her head up whenever she would hear him, loving his love and that he fed her in equal measure. He misses snuggling with her because she was always so good at that. Giving and receiving love. When Joey would come home from school, he would plop down on the sofa and so would she, her head in his lap as he settled back into “home.” She used to spend many of her days hanging out in his room, waiting for him to come home. Jason taking a nap on the sofa, Sunny always snuggled up next to him, never leaving his side. She was so good at never leaving your side.

And me? Well, she was my sidekick. That sweet dog was by my side for every single thing. The ordinary things… coffee and reading in the early morning or making dinner. (Oh, her love of food. She was a Labrador, after all.) The great things… milestones, awards, good news. She celebrated with us because she was always with us. And the hard things too… loss, fear, grief. Quietly offering her body to hug and cry on. There, always. It was such a privilege to care for her these last few months, when she needed more.

Sunny was the heart of our family. She was by my side nearly all of motherhood. She was right in the middle of the mess, the good and bad. She loved on me when I was vulnerable. One of my most treasured memories was when I was in labor with Ian. I was in denial that it was actually happening but I was in so much pain. Jason went to sleep and I could not. She jumped up in our bed and let me spoon her and hold on to her — all night long. Every contraction, I cried out in pain and just clung to her. She offered me comfort by giving me a place for my pain. She will forever be my birth partner.

Whenever I grieve her loss, the loss of my dog, I am also aware of others who have sustained far greater losses… a parent, a partner, a child. Security, safety. Deep, profound losses permanently etched into the foundation of your life, in everything you do. And I think of the times when I have known loss, and she was always there. She loved me through it. Always giving me a place for my pain.

Every night after her cancer diagnosis before I went to bed, I would love on her, look her deep in her eyes and tell her “thank you.” I would say it out loud so she would hear it, feel it. I was thankful for all of it. The joy, the comfort, the everyday.

Her absence is a presence. I feel it. But perhaps that is her best gift. Feeling so profoundly the loss of her. Because she was such a great dog.

Thursday was my last day sharing a workspace with this guy. Or at least I think it was the last day. Maybe a small part of me hopes it’s not. I am still feeling a little scared and vulnerable right now.

At the beginning of all of this, I was terrified. We didn’t leave our house except for Jason picking up groceries, which he then spent an hour sanitizing before it all came into our house. We sprayed off boxes and packages before we opened them and then wiped down whatever was inside. We obsessively washed our hands all the time, even though we didn’t go anywhere. My kids got so sick of me saying, “Alexa, set the timer for 20 seconds.” But once we brought in the food and packages, we felt safe. Back in our bubble.

I miss our old life so very much. I feel like I should feel happy that things are opening back up. Talk of baseball, maybe marching band in the fall. Eating outside. Stores opening up for nonessential things. Travel. Togetherness. I miss all of that so very much.

But it has all changed for me. I am scared to do those things. I find little comfort in things opening up because it makes me feel even more vulnerable. We have masks hanging up by the door, paper masks in the van in case we somehow forget ours from home, disposable gloves to pump gas or get money from the ATM, hand sanitizer in cup holders in the car. I find Clorox wipes online at 3am when I can’t sleep. I find hand sanitizer that way too. Delivered right to my door, safe. I wear masks whenever I leave the house, even when I am outside. I stay at least six feet away. I send my love without a hug.

I think that the loss of security and freedom of my old life is one of my greatest losses during this time.  I see others, more confident than me, resuming the life I so desperately miss. But I am not ready. Yet.

As we learn more, I feel better. And we have learned a lot more. But in just four months, we have lost nearly 120,000 people in the United States. We lost 57,000 people in all of the Vietnam War. And we have now lost twice that many people – in four months. That is staggering to me, that kind of loss. And I know I have to learn how to life with this fear, with this uncertainty. But I think I am struggling most because I know too much. Because I know what the worst case scenario looks like.

I know what it’s like to see your kid in the intensive care unit. Sedated and on a ventilator. Completely and utterly helpless. Praying to God for mercy and begging medical professionals to help your child. One day, I remember walking into the ICU after Ian had a pulmonary hypertensive crisis, which is essentially when his lungs seized up and pushed his blood out, rather than giving him the oxygen he desperately needed. They gave him medicine to paralyze his muscles to force his lungs to do their job. I had just stepped out of the ICU and strolled back in to all these people around my son, exhaling. I am grateful that I didn’t see that, that moment in time where they saved my son. But I saw the aftermath, and that terrified me enough. I remember those ICU days… the roller coaster, the waiting, the helplessness. I remember it like it was yesterday. And whenever the memory starts to fade, the smell of that damn hospital soap brings it all back. I have lived the worst case scenario.

I never want to ever experience that again — my greatest love and my greatest fear, all in the same bed. So here I am and here I stay. At home, safe. I will likely have to be pried out of our home and gently shoved back into life. I joke that we used to never be home and now we never leave.

I miss the joy of going and doing. And I will get there again. I hope. I have pushed back all our doctors’ appointments to the fall, thinking if we are back in school then, we can go to the doctor. I am making hair appointments for late August for the same reason. Rationalizing when and how to push myself back into our old life.

So maybe Thursday really was my last day sharing a workspace with my husband. Time will tell. But I will miss it. For as much as our sense of order and organization were at odds, we were together. Safe.

One day, I will need to move forward. But for right now, this is where we will stay, where we feel safe. Home. Together. With my greatest loves, tucked away from my greatest fear.

Today marks 90 days in quarantine. It started almost like a break. Two weeks of home before we rushed right back into life. And we treated it as such, as the gift it was. Each day we tackled projects we hadn’t even had time to think about for over a decade. Feeling accomplished, we’d take a late afternoon nap and then enjoy a nice meal or movie each night. A break. Restorative. Home. Settled. Together.

Then, out of nowhere, we got the news our sweet Sunny had terminal cancer. And all of a sudden, the coziness of March seemed dark. Heavy. I’ve always said that dogs give you something people cannot. And I was not sure what I was going to do without my faithful sidekick of over 12 years. Each day was spent on high alert, wondering if today was the day. The end. Then schools were closed for another month. What seemed like a break now seemed daunting.

As March slowly faded, light began to peek around the corner. Warmth began to seep in. April. We celebrated our Ian’s birthday. Together. Springtime took hold and by the time we got word that we would not be going back to school this year, we had accepted the inevitability and built new routines. Comfort is found in routine, even if it’s a new routine.

But then as May eased into June, the end loomed. Big changes. The end of the school year for Joey. Bigger changes for Ian… the end of elementary school, the beginning of middle school. I’m still working on putting into words what all that feels like. Big changes in the midst of endless uncertainty.

So here we are. Ninety days later. Our sweet girl is still with us, our constant. Our new puppy Buddy has brought the joy that only a puppy can bring, reminding us that the world is wide and wonderful. And that it’s best shared with the ones you love. A gift of quarantine.

It feels like a lot has changed, and sometimes it feels like nothing has. Time has moved quickly and stood still. There has been loss and there has been gain. Being rejuvenated, being exhausted. Missing the connection that fueled our days. Feeling grateful and questioning. Deep emotions, the kind we breathe in and out.

Ninety days in quarantine. Change and sameness. Ebb and flow. Loss and gain. Life. Or at least how it feels right now.