by Liz Johnston
This is probably going to come off as harsh..after all, I am home, I am sick, cranky, irritable and chronically saddened....but do me a favor? Could you please STOP complaining about your kids growing up? Please?
Okay, on the one hand, I get it. Change is hard. When your kids grow up--they need you less. Which is a loss- of sorts. I’ve been there. I’ve lamented the passage of time, the loss of the baby phase, shed tears over the first day of kindergarten--the going off to college. I’ve complained. I’ve posted.
I regret that now. Not my feelings--because all feelings are valid. But I regret saying things like “please stop growing!” or “I want my baby back.” I regret it for every mom or dad who has a child stuck at one age for all of eternity. I regret it for every mom or dad that has to celebrate the birthdays of others (the celebration of aging) and can’t do that with their own.
I regret it for my son. Who’s life at every stage was precious. I regret it for us, his mom and dad who cannot watch him get passed 24. Ever.
You’ve heard the old adage “do not regret growing older. It is a privilege denied to many.” Well I’d amend that. Love your child with all your might. Love every stage. Be grateful for time-- and its passage. Do not regret that your child is growing older. Be grateful your child is able to. The alternative is unspeakable.
by Liz Johnston
People frequently tell me--“you’re so strong”. They don’t see me on the days I am brought to my knees with pain--the days I can’t catch my breath from sobbing. They say “I don’t know how you get out of bed,” but there are days I struggle to do just that. They say “ I admire your love and grace,” but they are not there when I’m punching walls or furniture with fury. (My wrist is black and blue in fact.) I am not always strong; I am not super woman; I am not always gracious. But when I am asked how I endure, my answer is always the same: Love gives you courage. And I have a lot of courage.
When I was 24 and found out I was pregnant--I had dropped out of college; I was working in retail, (translation I was broke) and I was not married. I had no idea who I was or where I was headed, but the love I had for my unborn child gave me the courage to be a mom despite all the obstacles. And it changed me forever.
When Jordan was 24 and we found out he was sick--the world fell out from under my feet; I was terrified and pained to the core for him, for me, for the entire family. But the love I had for Jordan gave me the courage to care for him, to be by his side, to give him hope and keep myself together, despite my utterly broken heart. Again, I am changed forever.
And now there is the world without Jordan--the hardest place to be. I don’t know how much time I have here, but I do know that I am only able to endure it because of my love for him-- and because of his for me. It gives me the courage to do so.
I have the courage to breathe; I have the courage to get up everyday; I have the courage to teach middle school; I have the courage to start a foundation; I have the courage to celebrate the birthdays of other children when mine is gone; I have the courage to run for office; I have the courage to get healthy; I have the courage to laugh with friends; I have the courage to weep with grief. I even have the courage to be still.
I have the courage to live--all because of love. All because of Jordan.
by Liz Johnston
Today I am 50. Imagine my mother’s surprise when she realized there were 2 of us entering the world that day! While I am sad that my mother and twin sister Ingrid couldn’t be here to celebrate with me today--I am grateful for them and for all who were with me. My friends and family have held me up and encouraged me this past year. And for my birthday--I feel more loved than ever.
I need to say that birthdays and other holidays, while still joyous, are always a little sad without all of my entire family here in CT, and even harder for the past 10 years without my father. But now, without Jordan, they are unimaginably hard. We are all missing him. But I feel like I’ve been close-lined. It’s hard to imagine how I will possibly live without him. However, my purpose here on earth-- and my identity as his mother-- continues. So must my life.
Jordan is my everything. How could I celebrate my life without celebrating him? He brought meaning to my life. He brought pure and unconditional love to my life. I will never go through a holiday or birthday without mentioning Jordan. I will always honor his memory and share his story. Wherever I am, whoever I am with. Jordan wanted to have a big party for my 50th. So I am celebrating my life today for him. For my parents who gave me life and love. For all of my friends and family who love me. And for myself. How can I not celebrate this beautiful life God gave me? As sad as I am, I do cherish every day.
And as long as I am alive, Jordan’s memory will live on. Through my love for him, through my stories of him, through the foundation, through all of the kids we will help for years to come. So thank you to all who have rallied for us. Thank you to my tribe for taking me as I am. Thank you for supporting me now and in the future. You have helped me feel less alone and more inspired. And thank you to my loving husband for always having my back. No matter what. Even in the face of all my loss, I have been blessed in this life.
Our time on this earth is so tenuous, so uncertain. Which is why we must grab ahold of every day we are given. Let’s celebrate life today; let’s celebrate each other; let’s celebrate our love for Jordan. Let’s live 2018 with more love, more kindness, and more purpose. Let’s dominate this thing called LIFE!
by Liz Johnston
What’s your story? I’m curious. Why are you alone at the edge of this pool on Christmas morning? When you complained about the reggae playing loudly over the speaker instead of Christmas carols, I detected a Massachusetts accent. So what brings you to Florida? And why are you alone at the holiday?
We all have our stories. I just didn’t have the courage to ask about yours in person--for fear I’d make you sad about it. Same way I was glad you didn’t ask about mine. Instead we just wished each other a Merry Christmas. Which couldn’t be further from reality. Nothing merry here today.
I am here today because I lost my son Jordan in October. I knew I wouldn’t be able to outrun my grief. I’ve tried. It follows me. Just like the holidays do. Halloween crept up behind me without notice and Thanksgiving rushed in soon after. So I don’t know why I thought Christmas might hold off without Jordan. But back at home, the snow fell, the family gathered, the presents flowed, and dinner was eaten. All without him. I’ll never understand how.
I’m sure you know the old adage. Time marches on. It waits for no one. So no matter where I go, here I am--knee deep in sadness. But my sadness is a reflection of my love. And that love is my story. The story of extraordinary love between mother and son. But I’m still glad you didn’t ask. Because today I just wanted to pretend that somehow my story had a different ending.
There are others gathered at the pool now. They have stories too. But I won’t ask about them--just in case they are trying to outrun their sadness, hide from the holidays or pretend--if only for a moment. No, Instead, I will imagine their stories. I will pretend to know what they carry in their hearts. And because of the possibilities, I will wish them a happy holiday; I will be kind. Always kind.
by Craig Sebastian
I've been told, that in time, something good will come from the passing of my son JORDAN WILLIAM SEBASTIAN. For the most part, I agree with that sentiment.
I've been told, that the memorial service held for my son, JORDAN, was the largest, most beautiful and heartfelt memorial service they've ever attended.
I've been told, by some parents who attended the memorial service held for my son, JORDAN, that it made them go home, hug and kiss their own children and tell them how much they loved their children. In turn, they vowed to better parents.
I've been told, that the memorial service held for my son JORDAN, made people reevaluate THEIR OWN LIVES, it made some people UNDERSTAND WHAT'S REALLY IMPORTANT IN LIFE.
I've been told that "because of your son JORDAN, I'm no longer taking anything for granted, I will learn to DOMINATE THE DAY each and every day."
I've LEARNED that SO MANY PEOPLE, FAMILY, FRIENDS, CO-WORKERS & ACQUAINTANCES ARE GENUINELY CONCERNED FOR MY FAMILY AND I. There are some people who I wouldn't have imagined would be so very encouraging and THOUGHTFUL.
I've LEARNED that there are MANY SIGNS, REMINDERS If you will, that MY SON JORDAN is CONSTANTLY with me.
I've LEARNED that no matter how much time has passed, how busy I TRY to be, nothing will occupy this EMPTINESS, NOTHING will fill the VOID which resides in my chest.
I've LEARNED from my son JORDAN, never be too busy to receive the DAILY GOSPEL!
I've come to the conclusion that GOD had a plan for my son JORDAN. I'm not 100% sure exactly what it is, but I’ve LEARNED not to QUESTION GOD.
by Liz Johnston
This was taken on October 19th, 2017. The evening Jordan passed away.
Photo Credit: Roberta Esposito
Sade’s album, Love Deluxe, was chosen to play repeatedly at Jordan’s services. The album was released in 1992 and was a favorite of mine while I was pregnant with him. I played it on repeat in my car and every time the song “No Ordinary Love” came on, Jordan would kick away in my belly. I don’t know if it was the heavy baseline or just a coincidence, but he always kicked when that song was played.
Fast forward 20 something years to Jordan and I sitting in another car together after a URI football loss. He was extra upset on this particular day as the losses were beginning to weigh heavily on him. After games we would grab a meal together before I’d head for home, but on this day, he needed to sit for a bit first.
He turned to me and said, “Mom, I’m going to play something for you,” as he connected his phone to the bluetooth. “It helps me to relax or feel better when I’m down.” To my amazement he played the same Sade album. I don’t think he ever knew how special it was to me. Jordan definitely had a thing for 90’s music--but this seemed serendipitous. It was such a beautiful moment. A reminder that we were so connected--by love, by music, by distant memories of both. Who knows.
Sometimes God gives you signs. This moment was one of those signs for us, and this album continues to be a sign, a memory and a message for me. There are the obvious messages within, like “Cherish the Day.” I am trying. On the days that life seems pointless without him, I remind myself that I need to cherish the life that he can’t live. Cherish my days here on earth until I can see him again.
And there’s “No Ordinary Love” which has become our mantra, the sound track of our life together, if you will. A symbol of our extraordinary relationship. I remember running one day, listening to Sade and hearing the lyrics “When you came my way, you brightened everyday, with your sweet smile....” And I thought, this is so true. My life began, my life made sense and made me smile-- once he was born. I told him about this realization when I got home from my run. He just said “Aw, thanks, Ma.”
Sometimes I see pictures of him that I just have to post and I caption them with the lyrics “I couldn’t love you more, if time was running out,” self-explanatory and true until the end of time. There is no way I could love him more. No way I could love anyone as I do him. Maybe that’s why I never had other kids of my own. I loved him too much to have room. And the song “Kiss of Life” reminds me that “there must have been an angel by my side, something heavenly led me to you.” I believe this. I was chosen to be his mother, we were chosen to be together by something heavenly.
I believe in signs. The significance of this album is one of them. It is the reason I played it on loop for two hours at his memorial service. It is the reason I play it on purpose to feel close to him. And when I am feeling my worst, my saddest, my loneliest, Sade always randomly comes on in the car, store or restaurant--wherever I happen to be in that moment. It is a sign. I know it. And I am reminded of his love, reminded of his presence, reminded of our irreplaceable bond. And I am reminded to “look at the sky; it’s the color of love.”
By Liz Johnston
I am that person no one wants to be. I am the one they whisper about....“that woman that lost her only child.” I am the reminder, the measuring stick by which you count your blessings. I am the one living the absolute worst nightmare of most. And it is easy to see why. It is easy to look at me and see loss. It is easy to look at me and feel terrified and helpless. It is easy to look at me and know sorrow and pain. All of that is completely understandable.
But there is another way to look at things. I am the one that got to be the mother of Jordan William Sebastian. I am the one God picked to be his mother. I am the one Jordan picked to be his mama. I am the one that had the privilege and the joy of spending my days with that beautiful soul. I am the one that got to see him grow, and learn, and flourish. I am the woman whose son made her proud every moment of his life. I am the mom whose son loved having her around--even through his teen years. I am the woman he admired most. I am the recipient of his unconditional, unwavering, fierce, undying love. And love, love is everything.
Listen, I would give my life in the quickest heartbeat if it meant Jordan could live longer. And I’m not saying that I am happy about my circumstances. What I am saying is this-- I will choose a life of gratitude over misery. I will choose a life of gratitude over pity. I will continue to consider myself blessed to call Jordan mine.
I will always be sad. Every. Single. Day. But my gratitude is greater than my sadness. And that is how you dominate the day. Every day that you are granted.
Thank you for the love, Jordan. I will always be grateful for our life together.
This week I’ve had to contend with several significant firsts and lasts. For example, I attended what was likely to be the last Hopkins football banquet for me. It was a moving tribute to the seniors of team 145 who had lost their beloved Coach Sebastian. The same coach who’d earned the season’s first RELENTLESS award for powering through practices and games while terribly ill.
At the banquet the seniors honored Jordan’s father and I with the last RELENTLESS award of the season. Presented with signed game footballs from their last win. Jordan certainly deserved the award more, but our award was a reminder that we will have to be relentless forever to live in this pain, and certainly to accomplish our goals in honor of Jordan’s legacy.
Also significant-- this was the first time I have ever decorated a grave site for Christmas. While my husband and I have decided to just ignore Christmas altogether, I still felt that Jordan’s stone needed to be honored with some holiday cheer. I went there and raked the leaves, selected special Christmas ornaments from his childhood and then arranged them within the greens I’d purchased. It seemed silly at first, “holiday cheer” when he can’t be here to celebrate. And who benefits from cheer at the cemetery anyway?
But it’s my first holiday without him, and that means I don’t really know what is right, what will feel good, or what to do. I just wanted it to look nice; I wanted Jordan to to feel included and know he’ll always be important and remembered. And I wanted those who pass his stone to say “he is loved; he is cared for.”
The first time Christmas decorating this way naturally makes me recall the last Christmas he was alive. And today--I can’t even go there. A series of firsts and lasts. I’m pretty sure the rest of my life will be marked and measured this way.
The last time we'd all pick out a Christmas tree together.........
by Jalen Hoskie
A Scar Heals This WoundIt is said h your heart, your world ripped away from you with no
It is said that time heals all wounds, but losing a brother is much more than an ordinary wound. It’s having part of your heart, your world, ripped away from you with no explanation or understanding of why. A wound that lies directly on your heart, cracking and being irritated with every inhale and exhale. Not to mention I have always been one to pick at my scabs, prolonging the healing of any wound. And this one for sure is continuously being picked at remembering every moment that we shared together and thinking about every memory that was stripped from us. So how does this wound heal if I won’t let it, if I keep picking at it?
I realize a wound like this is never meant to heal fully or properly, a wound like this will always leave a mark, a scar. Not the kind of scar you continuously rub cocoa butter on and in a few weeks it fades, i’m talking open heart surgery scar right down the center of your torso scar. That is the kind of scar, the kind mark this is leaving on my life.
But this scar is far from formed, getting picked at every second of every day. Ordering Caramel frappuccinos instead of my daily coffee. Hearing songs like “ back that thing up” And somehow uncontrollably breaking down thinking of you. Thinking of every fadeaway you ever hit off of one of my assist. Talks around the dinner table where me and you fed off of each other like two comedic geniuses. And then of course the countless memories throughout college. This list can go as long as I let it. Then I think about all of the memories that were stripped from us, and all of the memories I now have to create without you. We were supposed to tear up that JCC 30 and older league. The thought that I will never pass you the basketball again sends a cold drift through my body that temporarily paralyzes me. The thought that we will never sit around the dinner table with our children and share stories about when we were their age sends a fiery rage through my body that causes vibrations only video game controllers can relate to. So how does this scar form if it remains so fresh, so irritated, so picked at?
I believe this scar will form by our family and friends continuously coming together and continuously speaking your name, and all memories shared with you. Keeping your memory alive and well, continuing your legacy. Ensuring you are remembered for the positivity, the love, the dominance, the joy, the empathy, the strength, the relentlessness, the power, the wisdom, the swag, need I go on? Rather than the sadness and heartbreak that consumes us now and will realistically be with us forever forever. Learning to live with the pain through the strength of you and the collected strength of others who are enduring this pain, only then when all of this comes together like the white blood cells in the body can the scab heal and let the scar form.
So this big nasty scar that’ll be left behind from this “wound,” what will it represent? What will be this scar's story? It will represent the memory of you. The scar is permanent, a part of me, as are you Jordan. It will be a constant reminder that you are here for me, and with me every day. It will be a reminder to appreciate the little victories. For every day that the Lord grants me, to dominate it relentlessly with maximum effort. A reminder to be kind, loving, and honest. A reminder to live in a way that will make you proud. A reminder to be my best self at all times, and encouraging and inspiring others around me to do the same. Help live out your dream and carry on your legacy to the best of my abilities. Wounds like this are never meant to truly heal, they are forever a part of you, a mark, a scar, to stand for whatever you let it. There is a story behind every scar. The story behind my scar, they are going to say a genius wrote it... or understanding of why. A wound that lies directly on your heart, cracking and being irritated with every inhale of o are enduring this pain, only then when all of this comes together like the white blood cells in the body can the scab heal and let the scar form. So this big nasty scar that’ll be left behind from this “wound,” what will it represent? What will be this scars story? It will represent the memory of you. The scar is permanent, a part of me, as are you Jordan. It will be a constant reminder that you are here for me, and with me every day. It will be a reminder to appreciate the little victories. For every day that the Lord grants me, dominate it relentlessly with maximum effort. A reminder to be kind, loving, and honest. A reminder to live in a way that will make you proud. A reminder to be my best self at all times, and encouraging and inspiring others around me to do the same. Help live out your dream and carry on your legacy to the best of my abilities. No amount of indefinite continued progress of existence can heal this wound. Wounds like this are never meant to truly heal, they are forever a part of you, a Mark, a scar, to stand for whatever you let it. There is a story behind every scar.The story behind my scar, they are going to say a genius wrote it...
by Liz Johnston
This piece is bound to be all over the place, as are my thoughts and feelings these days, but such is the nature of grief. Today marks the 10 year anniversary of my father’s death. At the time, I thought I had lived through my worst nightmare. Little did I know that 10 years later, I would lose my son, Jordan, to the same wretched disease. I have had my heart torn out. Twice. And have lived to tell about it. Somedays I wish I hadn’t. And most days I believe that I need to cherish life--the same one that they no longer get to live. Both my father and son would want that for me.
Despite this devastating loss, or perhaps more accurately, because of this devastating loss, people can be weird around me. To be fair, most of my friends and family have been amazing. I’ve had friends who cook meals, do laundry, clean our house, grocery shop, or spend the day just sitting on the couch with me. I have family members that have held me, wept with me, encouraged me to get outside or go punch a speed bag; I’ve even had family come and clear out all medical supplies in hopes of eradicating some of our most painful memories.
But there are some people who can’t look at me, at us, at this unspeakable pain. And somehow, that avoidance adds to the pain. They don’t mean to hurt us; in fact they are probably trying not to hurt us. Some friends--the same who called incessantly during Jordan’s illness, don’t call at all any more. Other friends call to apologize for not being around, stating: “I know you are just inundated, so I don’t want to bother you.” Some family can’t look me in the eye, can’t tell me how sorry they are, and certainly can’t talk to me about losing Jordan. It is easier, after all, to talk about travel plans, the weather, or when I might be returning to work. None of which I care about right now. I am not trying to publicly shame anyone. I’m really not. Rather, I want to let people in. Grief is a lonely place. And even the clumsiest of company is --well, company.
I’ve been reading book after book on grief to feel less alone. In the one I just finished, there was a line that both struck me in the heart and punched me in the gut: “When a parent dies, we lose a part of our past; when a child dies, we lose a part of our future. Well I’ve lost both. My past and my future. At least significant parts of each. For this reason, I need to keep their memories alive. For this reason, I need my friends and family to call me, to look me in the eye, to share their pictures and tell their stories, to ask how I am feeling and how I am faring. Don’t be afraid of my reaction. I might cry. I might not. Just know this, I will never be tired of hearing about my dad or my son. Also know this, just because you don’t speak of them, doesn’t mean I’m not aching. Most importantly, know this: No parent that has lost a child wants you to forget. Our kids matter. They are part of us. We still want to talk and hear about them. I want you to speak his name: Jordan William Sebastian.
So, as promised, I am all over the place. But to rein this in and make my point, if you have loved ones who are grieving, don’t stay away, don’t ignore the elephant in the room, don’t avoid making eye contact, don’t change the subject. Instead, make the call, spend some time, look at their pain directly, cry with them. The tiniest measure of compassion matters more than you could know. Trust me. I know.