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by Liz Johnston Imagine if we knew ahead of time, exactly how and when we’d die. How would that change the way that we live? The choices we’d make? Imagine if we knew, at the moment our picture was being snapped, that that would eventually be the image our family would choose for our obituary, prayer card or funeral program. What would that feel like? Too morbid to ponder? Maybe.  Jim Talmadge of Primordial Ink is the artist behind all of my tattoos for Jordan. But when left with the reality of your son’s life cut short at 24, you do a lot of such pondering. When did he actually get sick? What could I have done differently? Did he have a good life? Was I a good enough mother? Did I do anything to cause this? I suppose on one level, the answers don’t matter any more. I can’t go back. The only thing I know for sure, without a shred of doubt, is that Jordan always knew he was loved, is loved, and by so many people.
Since Jordan has left this earth, I have gotten 10 tattoos in his honor. I am averaging about 1 per month at this pace. Sorry mom, I know they bother you. Sorry hubby, I know you don’t care for them either. But as any tattoo artist can attest to, getting tattooed can be therapeutic for some people. It certainly does not change your situation or make your pain go away. But it feels good to physically and permanently honor what’s in your heart. And however twisted it may sound, sometimes I seek the physical pain of a tattoo needle to dull the pain in my chest. Tattoos are healing in the sense that whatever it is you are trying to feel, convey, remember, honor, reclaim.... you wear it. Forever. For me, it’s an unwavering, undefinable, undying love for Jordan that I hold in my heart and wear on my sleeves (and chest and wrist). The beautiful name we gave him, his notoriously small and scratchy handwriting, his football numbers, his coaching whistle from Diege, the anchor he and his Rhody brothers wore on their uniforms, a football, his birthdate next to “No Ordinary Love,” the beautiful poem my brother wrote about Jordan’s many tattoos. And lastly, the small heart he colored and message he misspelled from a mother’s day card many years ago. They all capture a part of him, a moment in time, or something that is signature Jordan, but mostly, they are all pictures of a love I can’t describe in words. I’m grateful I didn’t know, at the time he gave the card to me, that I’d eventually feel the need to wear that like a tattoo. I’m glad I didn’t know ahead of time that one day I’d desire the pain of the needle just to quell the pain in my heart. When I look at pictures of myself from the past, I note the blank canvas that is my skin, with a sigh, and wonder if I’d have so many tattoos if he were still here. Doesn’t matter; he’s not. When I look at pictures of him from the past, I wonder, with a shudder, if he was already sick, and if I’d only known......but then I have to stop. It’s too much. And it doesn’t matter now. I can’t change the past. And I’m glad I can’t see the future. But my love for Jordan, well, that’s the past, the present, the future, all of eternity and probably even of past lives. There’s no beginning and no end to a love like that. Which is why I wear it like a tattoo.
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 There are so many gifts you can give a grieving parent: a story, a memory, a smile, a hug, a picture, all reminders of their love for the person they’ve lost. Lately I have been showered with gifts. Last week I received an email from a high school teammate of Jordan’s. In it he shared a hilarious anecdote about Jordan daring him to grow a neck beard (sounds like my son). He also shared openly about how Jordan changed the way he’ll live his life. “When people ask….I will stick my chest out with pride as I tell them about my teammate Jordan Sebastian, what an honor it was…..we are all better for having Jordan in our lives for however short a time.” These words—this letter—like others—a precious gift. Yesterday a colleague offered to share a folder of pictures she’d taken and saved of Jordan when he was a middle school student here. (It is also a gift to work at his alma mater where my colleagues knew and love him.) She asked with trepidation if I would like to have the pictures, probably for fear that she’d sadden me. But pictures of Jordan—especially those I haven’t seen—are nothing but a gift. Last week I got a phone call from one of the Deans at Western Kentucky University where Jordan was doing his masters work in Sports Administration. After offering his condolences and conveying how highly regarded Jordan was by the entire faculty, he shared the news with me. Jordan is posthumously being awarded his master’s degree. The dean also asked if I would like to attend the celebration to accept Jordan’s diploma for him-- as his name will be read at graduation. Naturally, being a proud but grieving mom, I burst into tears, barely able to finish the conversation. I was so grateful, but I wondered, what’s the point of a posthumous degree anyway? He can’t use it. He can’t frame it. He can’t add it to his resume or hang it on his wall. But I can. We all can. This too is a gift. We can all take that diploma and frame it in our minds to bring into focus the struggle of others. We can all use that degree, adding it to our metaphoric resume of things that inspire us. We can all hang it on the walls of our heart to remind us to have hope in the darkest of times. Jordan scheduled new classes, worked on projects and papers, read countless textbooks and articles—even from the hospital, at a time when he was fighting for his life and feeling like shit. If that type of relentless dedication doesn’t deserve a master’s degree—then I have no idea what does. Jordan’s degree is a symbol of passion, hard work, self-pride and hope. It is a gift I will cherish forever. I know Jordan is proud. As am I. We all are. That is the point of a posthumous degree.   Nothing in my life matters anymore. Jordan was my motivation for everything. I worked hard to provide for him; I lived better because he was watching; he motivated me to be my best self and I wanted the best world for him-- now now he’s gone. On the other hand, everything matters— matters with urgency and matters exponentially more than before. Every second is precious, every experience to be cherished, and each opportunity golden. How is it possible to live in both of these realities? I’m not sure. But I am. I am angry that people have seemingly moved on. That they have the luxury to do so. That they are back to business as usual and that I am so alone is this sadness. On the other hand, I am so grateful that the people I love are able to be happy. Changed forever, but happy. Why shouldn’t they be? Life does go on. People are resilient. Myself included. Only difference is—I will never move on. Monday, I visited the cemetery on my way to work. I never go in the morning, but felt compelled to. I watched myself from the outside--as if in a dream state. I felt sorry for this mom, on that foggy morning. Leaving the only set of footprints in the snow before she knelt for a while. And I thought, for everyone who did not have to start their morning here, today is a good day. Ironically, after my visit to Jordan’s grave, I too had a good day. I’m not sure why. But I did. 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. Whose 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.
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