Author: laurafeiler

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I want her.

We’re settling in for a long winter around here. Creating new traditions and cozy spots. Embracing the slower pace of our pandemic lives. Knowing that this is how it has to be right now. Seeking new memories found in being… being home, being together. But it still feels like there is a lot of loss woven in.

I’ve written about loss before. Like everything nowadays, it feels like a long, winding road. One where you can’t see what’s around the bend. And because of that, you can’t prepare for it.

I’ve seen this most in how Ian has struggled with the loss of Sunny. He talks about missing her, hugs his Sunny pillow as he goes to bed and shares his favorite memories of her. Bedtime is hard because in the dark and quiet, it is so very hard to quiet your mind. Tonight he came downstairs after we put him to bed and simply said, “I want her.”

The loss of his sweet Sunny who loved him through everything. Loss and more loss. Sometimes we just have to sit with it. Feel it. But when I see my sweet boy missing his best girl on top of missing everything else, oh my heart. I want her too.

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Hanging on.

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.

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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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A Bowl of Soup

Love can look like many things. There are those big, bold expressions of love. Flowers, dinner, a special gift. Celebrations and reminders of where you’ve been and how you’ve grown together.

Other times it looks like a basket of laundry that’s folded, a dishwasher emptied, counters wiped clean. Reminders of a partnership, that sometimes a 50/50 balance isn’t possible and love is carrying an extra load for a while.

And then there are other smaller gestures of love. I’ve continued to struggle after my (traumatic) tooth extraction earlier this week. I’ve been ok with Advil or Tylenol. Not pain-free but bearable. But then when it wears off, I’m throbbing again. More Advil, wait for it to kick in, the cycle continues. I haven’t slept more than 2 hours in a row since Sunday.

Jason knows my history of teeth pain. He’s been there through more than a half-dozen “hot” teeth resulting in 10 root canals, three extractions, two dry sockets, over a dozen crowns, an apicoectomy and countless worried days and nights about every little ache in my teeth. This week is something he’s used to, even though he’s never had teeth pain. He knows how to talk me down when I worry it will never get better, gets up countless times in the middle of the night to get me a cold coke or a bottle of water or my antibiotics or hold my hand while I cry. Gently reminding me that crying just makes it worse. Making meals. Coordinating all the things. Becoming the captain of our ship until I come out on the other side. We do teeth pain well.

And today was a time when a small gesture of love felt greater than a big, bold celebration of love. Jason had a quart of delicious, warm broccoli cheddar soup from Panera delivered right to our door. Can you imagine? I think it’s one of the best things I’ve ever eaten in all my life.

Love. Big, bold celebrations. Carrying more weight when the other cannot. Small gestures that feel bigger than big ones.

And knowing that a bowl of soup = true love.

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Her absence is a presence.

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.

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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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Open Heart Surgery Memories

You know how you have moments in your life that end a chapter and start a new one? Those moments where time stands still briefly and you know your life will never, ever be the same? We had two such moments-in-time — an ending and a beginning and then another ending and another new beginning — way back in 2009.

The first was Ian’s birth and finding out just moments after he took his first breath that he had Down syndrome. Oh the fear of what life would be like. I couldn’t process the enormity of what I had just been told. My baby was born a little after 1am on Easter Sunday but I couldn’t have known that that day would be a rebirth for all of us. And then it seemed that Ian’s birth day wasn’t done with me yet.

I remember sitting in a chair at a table in the parent room, listening almost as if I wasn’t really there, as they told us our brand new baby had all these things wrong with his heart and would need open heart surgery soon. I glanced at the clock on the wall. A few minutes past 9pm. I remember muttering to Jason, “Oh, how your life changes in 24 hours.” And then thinking, with remarkable clarity, that I couldn’t move. If the hospital was on fire, I knew without a doubt that I could not move. I felt so many emotions that I couldn’t feel anything at all. An end of a chapter and beginning of a new one. The end of life as we knew it. A better one was to come, but we couldn’t have known it then.

And then Ian came home and Joey just saw his brother. He showed us the ultimate gift of unconditional love. And still does. Over those first few weeks and months, we settled into life with two boys that felt pretty much like what I thought life with two boys would feel like. And as our new baby began to unfold himself to us, I realized that I didn’t have a baby with Down syndrome. I had Ian. A perfect gift.

The time for open heart surgery came 11 years ago today. And I couldn’t let him go. This baby who saved me when I didn’t even realize I needed to be saved. The end of a short chapter, the blessed simplicity of life with a newborn.

The roller coaster began. He endured a pulmonary hypertensive crisis as soon as they started his surgery; they couldn’t even close his chest that first day; he needed a pacemaker for a few days to make his heart beat properly; he couldn’t come off the ventilator for nearly a week; he blew all of his IV lines and they had to try to get an IV into his head after shaving it; he had another pulmonary hypertensive crisis and needed his body paralyzed in order for it to pass; when he came off the ventilator, each eye was going in a different direction swirling around, which terrified me; they had to restrain him on the bed so he didn’t take out his IV lines; when he finally came off the vent he was awake for 26 out of 30 hours metabolizing the sedation; he needed methadone to ease his narcotics withdrawal; he had to learn how to eat all over again; he was on the ventilator for 6 days and in the ICU for 10 days. On the day of discharge, we burst onto Greene Street in the intense heat and humidity of an August day in Baltimore and thought, “NOW begins the rest of our life!” The beginning of a beautiful new chapter.

And now? Our life is better with Ian. Our life is better BECAUSE of Ian. His light, his joy, his love… they radiate from him and the rest of us are blessed to bask in it. I don’t have the life I planned but I have the life I want. On this day, 11 years ago, the amazing staff at the University of Maryland saved our Ian’s life. The words “thank you” never seem adequate but I know, without a doubt, that ALL the joy of these past 11 years is thanks to them. They are the reason his light shines!

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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.