Sunday, November 20, 2016


It is finally cold. I turned on the furnace for the first time this season when I got up this morning. Last night was the first holiday party. My fingers are cold and typing is a little bit difficult.

I have so much to look forward to right now. Travels and trips, new skills and new friends. Family coming for Thanksgiving and Christmas with my local family later. I love this time of year and fear it. So much happened to change my life forever at this time of year. I have managed to make those changes as good as it is possible for them to be, but it doesn't erase the painful memories of the catalyst for all of these changes. Yet these memories, in spite of their pain, are sacred to me. They were the last ones I got with you.

Ten years ago today you came home from the hospital for the very last time. I lived in a tiny, somewhat crappy apartment and was as poor as poor could be, struggling to get through working part time, going back and forth from the hospital, caring for three little boys under the age of 13.  You didn't see any of that though. You saw home, and home was wherever we all were. You vowed to make your brothers breakfast every single day. That is how happy you were to return. We cuddled a lot. You helped make Thanksgiving dinner. You asked if you could help, so I gave you rolls and a brush and a bowl of melted butter and you carefully basted every inch of them, top, bottom and sides. You spent the day with that soft little smile on your face, the one that reminds me of my Grandpa Reichmuth. You would go rest and then return, your body unable to keep up with the desires of your heart, so you just did the best you could and truly seemed to enjoy the punctuation points that your exceptional effort resulted in. It is a lesson I have personally yet to learn. You didn't waste time bemoaning what you could not do. You did what you could and took your satisfaction where life presented it.

When it came time to eat our dinner, you looked about at the plenty your life was affording you and you were so happy. You had the turkey leg you had been craving. I didn't think that day about what made you so anxious to be home and involved. I just savored you, a temporary calm having descended on the family. We didn't know the countdown had already started. We just didn't know. I wonder from time to time what I would have done differently if I had known. That particular day, Thanksgiving of 2006, I can honestly answer "nothing". You weren't safe to go to Thanksgiving Day celebrations with all our family. We made the most of it in that small apartment and counted our blessings where they lay. I am grateful that on that day I didn't waste time railing against what Fate had wrought on us. It was the beginning of my beginning combined with the beginning of your end. That is something I don't like to think about very much. The idea that this is what it took for my selfish heart to crack is a dark, dark place to stare into.

People sometimes ask me how I do the holidays now, having lost a child and having watched you dying one labored breath at a time throughout the holiday season. I never quite know how to answer that. I guess it comes down to just a few key things.

1.  Your last days started at this time of year and ended just when 2006 ended and 2007 began. Those are sacred memories. Horrible things happened then, but they broke down walls. It was raw and it was real. There is something very authentic in the memories of that time frame, when life took away any possibility of pretending we live forever, when all the platitudes of "everything will be okay" were wiped away for the falsehoods they always were. I faced the demon of your mortality nose to nose, toe to toe. We lost the fight, but when I look back now I see strength and spirit against an unbeatable foe, not just in myself but in you, your father and your brothers. One doesn't have to win to be remembered as a hero.

2.  Life is both happy and sad. I never knew those things can coexist until this time ten years ago, when I started my first painful lessons. Their coexistence feels authentic to me now, but infuriated me then. I do not feel disloyal anymore for being happy and I do not feel guilty for the times when I am sad. I don't struggle with the idea that it is the holiday season and therefore I should be happy happy happy. Believing that would mean happiness is a right, a given, something that was denied me while being provided to others - and I know now it is not. It is something to be held on to while it is there. The fact that it will always leave eventually makes the flip side equally true - that it will always return if we let it. And so as I sit through many moments like this one, where I think of you and wonder and hurt and regret and yearn, I see with increasing clarity the happiness in those memories. Suffering does not have to only mean pain and being happy doesn't mean I am forgetting you, your journey or your absence. You came home for Thanksgiving. You grew weaker every day from that point forward. But we were happy at the beginning of the end. That seems beautifully ironic now.

3. I do believe I will see you again. I believe that with every fiber of my soul, down to the rocky core of who I am. I did not know my own faith until I had to wrestle with wondering where you are now and my faith is now nothing like what I thought it was supposed to be. It is so free from dogma! My inner compass of right and wrong is strong and sure and yet so sweet and so gentle. I love my faith. My belief that you are still in existence somewhere just beyond the veil fuels me. I truly know that the world was robbed when you died. By being what I feel to be a good person, I feel I am giving into the world a bit of who you were and what you had to offer. That, in turn, will allow me to face you without shame when I do see you again. I will not have wasted my life in sorrow and pain. They are heavy burdens but they can be shouldered. Once I let go of the idea that it is unfair that I should have to carry them, they became more manageable. Everyone has burdens to carry. Mine is my lucky I am that mine involves carrying you. I would carry you forever and always, to the end of existence if need be. I hold you right here and you help me be who I wanted to be all along but could not shore up beneath until you.

4. The world is a sorrowful place. Nobody is as happy as the Christmas commercials and movies tell us. My gentle sorrow makes room for others' sorrow and that is important work to me. Everyone needs permission and space for their sorrow and to realize that it can be a mutual burden. That everyone has it. It is such an illusion that anyone has ever had everything together and a perfect life. It is more honest to realize nobody does. Not one person. How much lighter sadness is when room is made for it to exist. It actually calms that inner demon and the sweetness of connecting beside our sorrow seems like a true, if unlikely, doorway into the ultimate emotion.....gratitude.

This is why I don't fight that sorrow being here, inside me and visible too. There is always a temptation with the death of a child to let it become the ultimate in loss. While it is certainly a source of intense, long-lasting, at times unfathomable pain, it isn't the only pain out there. I would even go so far as to say there really aren't categories of pain. Mine can't be greater than yours because I can't feel yours like you do. As it turns out, pain can unite us and it is in that unification that we can access the kind of Christmas sweetness we aspire to feel. I don't want to have more pain than others. I just want to bear up underneath mine in a manner that feels authentic to who I now am.

We all want to reach out to the soup kitchens and poor children at Christmas time and we absolutely should do that. I believe Mother Teresa referenced though that the true poor among us are the emotionally poor. That is a kind of poverty that is usually ignored or overlooked and everyone suffers from it at one point or another. The great thing is that it is everywhere, in that it is easy to access and impact if we just open ourselves to doing so. It can be done right in our own homes, places of work, churches and communities. I truly believe that one to one, person to person, is the source of healing from great pain and that it doesn't come from looking for others to fill us up. Rather, it comes to us softly as we seek to impact others in  meaningful ways, ways that are meaningful to the receiver. Beautifully, that can be done in just a moment's hesitation.

My soul has been raw for a long time Joseph. I hope it never hardens up again. Yes, it hurts, but as I remember you I realize it is a gift. I love you. I miss you. I'll be home one day and I hope when that day comes, it is obvious my work was well done, not just for my own sake, but for that of all I have the small power to impact and for all that I know you wanted to do and did not get to.

I want to see you in the snow on Christmas and happiness surrounding you throw your arms up to the sky...I keep these moments by and by.

Thursday, October 27, 2016


She lay quietly in the twilight of her life, waiting. Patience has grown thin over the years, as has her frame...angles and softness at war with one another as time marched across her features and her innards, pulling in directions always headed downward. Interestingly, she did not care. This was a moment she'd waited for all her life. She exhaled.

Like a gossamer fog the veil began to lift, turning light from the density of reality to the shimmer of a dream and she, a lone traveler, embraced the step to the train, watching it grow curiously stronger as she hung on and heaved herself aboard. Its chugging sounds and steam tasted like a memory as she found her way to a seat, alone in the car. Pulling from the station and picking up speed, she sat straighter than she had in years, feeling time melting away, backward and yet forward as the countryside flew by, leaving this place and bound for another. Illness and oldness and heartbreak and healing, she let the window down and tipped her face into the sun. It was on the wind; it was in the sky. She felt him waiting like a kiss and a promise and anticipation fluttered in her heart, filling that empty space that had lay dark, in pain and lonely so long.

Across the aisle sat a glimmering being, head tilted just so, watching her with a small smile. She smiled back in recognition, realizing this presence had been there all these long years with her. She wanted to reach out and touch him. Thank him. A giggle bubbled up in her mind as foibles and embarrassments flew between them wordlessly and before she knew it, they were laughing together. She felt his fatigue and his pride. He'd never let her go. He'd never let her down. Not once. She felt him say the same to her. Would he be leaving her now, she wondered?  No. No, she would be joining him now instead of the other way around. With this she relaxed again and turned once more to the window. Hills came swiftly now, rolling with the gentle greenery of Ireland and Scotland and every beautiful place she'd ever and never seen.

Out and out the window she gazed, her focus becoming intent with purpose. The light changed within a breeze scented with hope upon which she was flying now, grass green and crisp on her feet like it was as a child. Joy tickled at her until she could no longer walk. She felt him now, near and anticipating, as she was. People began dotting the landscape, waving to her with light-filled smiles, wanting to see her, wanting her to stay but excited that she could and would not. They knew what waited for her...WHO waited for her.....She registered their presence and her own recognition in little waves of glee, her every being urging her on, fingers fluttering to them as she moved. People became more frequent, more familiar.....friends, children, patients she had known, their stories written in the very core of their energy, instantaneously told and remembered. She began to cry, all those things she didn't even remember throughout her years mattering so much more than she knew. They patted her on by, pressing gently, encouraging her to take it all in. Here now was family, beautiful, whole, well in mind and in body. Scents of fried chicken and the sound of hogs in the yard, Grandpa with his crooked little smile and massively warm hands, Grandma with her voice and her hug, lightening bugs dazzling and dancing the air. Huettners and Reichmuths and babies and dogs.....Sparky joined her now, running, mouthing her forearm with a yelp of joy as he used to do and she laughed the laugh of a girl as they ran together, tireless with the gait of the young.

Over the hill now, hair streaming like a wild thing behind her.....and suddenly into the arms of her father, his mustache tickling as they embraced and kissed and cried..... every proud moment he'd missed, every "good job" she'd longed to hear echoing in her head with a power that she knew was his way of trying to reach her all these long, long years apart. She smelled his Paul Sebastian, felt his bristled cheek and then his hand pressed her away with a mute "not yet", gesturing to the path, assuring her he'd be right behind her as he always had been. And then she knew. This was it. It was time.

She made to take a deep breath, to start again in that direction and a figure appeared on the hill. She knew his walk. The shape of his head. The curve of his hands. He was coming. She could not still her soul. Hearts no longer beating thumped strong through the air between them.

Like the racing of a pulse,
with a rush like falling in love
she torn across the field to him,
down into the valley where he was waiting
and smiling,
so much the same
and so much different
And every sweetness that ever existed across heaven and earth cascaded in that moment
Dancing like snowfall around them.

She drew herself to him, the lingering feeling, the age-old memory of his skeleton form from the last hug they'd shared coming now to find the fullness of a ripe, whole, healthy being. He held on, hardly having known she was gone and she cradled his head and kissed him, a million questions silenced in that moment...silenced for the rest of all time, silenced until they ceased to have ever existed at all. She closed her eyes, knowing she'd been held all along, just as she had held him. Knowing him. Knowing, finally, herself.

Friday, October 21, 2016

Trick or Treat, Joseph style

Yesterday was a pretty good day in all. We are redecorating a couple of rooms downstairs and I spent time after work researching all sorts of furniture, rugs, window treatments, accents, televisions, TV stands and the like. It gets pretty overwhelming and trying to buy quality stuff over the Internet can be deceptive. I took a break to go to the gym. I take it as a sign of my progress on my own health, as I had the urge to peek into a couple of stores while still dressed in my workout clothes. 

A local discount store is right across the street from my gym. Every now and then something of value can be found there, so I dropped in to see what I could see. It hit me as I walked in that I had been to this store at this time of year right in the months before Joseph died. He had relapsed and was spending the majority of his days under lock down in the transplant unit due to his severe immune compromised state. I had gone into this store that year and purchased a ton of Halloween decorations and then brought them to the hospital to surprise him. We delightedly turned his hospital room into a creep zone. It is one of my most treasured memories and one of the few in which he was happy while in the hospital. We had fun.

Going into this particular store at this particular time of year used to just bring me to my knees. This time, it was fine. A little bittersweet, a little melancholy, but I actually smiled and enjoyed the good memories that came from that time. I went about my shopping with a little ache in my heart, but nothing too debilitating. As I was walking around though, something happened in my head that literally has not happened in YEARS. I saw something and felt that unconscious prick of "Joseph would love that, wonder how much it is". I came up short right away, but that subconscious urge to pick up something for Joseph startled me. It happened often in early days, of course, right after his death, but faded gradually over time as the permanence of his loss settled in to part of my every day life. I would have though no part of my brain could tease me like that anymore. It was a little shocking. A little sweet. A little sad. It was a weird item too, like blue dyed Cheetos balls or something I can barely remember now. Something that would have amused him for being different. I was always trying to feed him. He got so thin.

So yeah. Ten years later, apparently it can still surprise me. The difference now is that it doesn't derail my day. If anything, it gives me some peace to know he is right here inside me, as real as he ever was. I carry him in my heart.

Monday, September 5, 2016

The Silence Isn't Quiet

My heart has been in pain lately. The nature of the pain has changed, since really it is never gone. Its there every day and most days it is just one more of a hundred billion things that make me myself. Usually it is just hanging out, eating fries or smoking a cigarette, eyeing me from the dimly lit corner I have placed it in, that has become its home. Sometimes I hear it calling me and I am just too busy to give it the attention it desires. This pain, this presence is needy sometimes, though it is reassured, after this many years, that I know it is there. It doesn't call for my attention nearly as much as it used to. It is secure in its place.

But recently it has come back to me, out of its corner, its heavy arm placed around my shoulders in the old familiar way and I alternate between shrugging it off and leaning into its embrace. It is going to be ten years in January. Ten. There is a ten year, ten billion pound weight in my chest. Ten years at the end of this month since his bone marrow transplant. So much happened at this time of year and the memories recall the desperation that forced us to try this barbaric treatment, the fragile hope it gave us, the nauseating pathway that ended in the nightmare we most feared. The suffering we caused him. All the things he yearned for. All the things he missed. All the ways that I miss him.

And I do miss him. Actively.

It is this sweet and bitter taste in my mind, wondering who he'd be, missing who he was. Nick and Alex growing up and moving on underlines the fact that even if he were here, I would not have much of who he was at 13 left to me except the memory of him then. Grief mingled with empty nesting is a unique ache. All of them are out of the house. None of them are who they were. None of them love me now like they did then. It both takes out some of the sting and at the same time makes it infinitely worse. Sometimes it is hard just to swallow.

I am proud of all I have done. Who I am. What I have accomplished. I carry the death of Joseph in my pocket everywhere, every day, every minute and I am glad it is there. Just this morning, watching a video featuring this song, I felt such gratitude, that if Joseph had to have cancer and had to die from it, that of all the women in the world, I was the one chosen to be his mother. That I was given that unique experience of witnessing the absolute miracle of the human spirit to rise up and to know some part of him came from some part of me. He rose up every single day. He did it with humor and determination and a refusal to fully let his cancer take over his thoughts about his life. When he left this earth, I felt the mantle of that strength slipping away like a silken scarf, lifted by the breeze of his spirit leaving me, gliding from my neck and in danger of whispering away to nothingness. I grabbed it and held on. Sometimes holding onto it is the hardest thing I have ever had to do. Some days I am not even sure it is still in my hand. I don't feel so very strong just now.

I am weary. That's the thing that doesn't really seem to show on the outside. I am so so tired, like all parents after the long-term loss of their baby. There are just minutes, hours, days when I am so very tired of shoring up under the weight of that scarf. It is the thinnest thing ever and yet the heaviest thing to carry. Some days I truly wish I had found the end of this road. As ten years without him approaches, as the walls of our house pause in this new emptiness without his brothers, I feel the echo of my steps and I wonder what the point is. It is a whole new world and I am tired. I know it can be good and I know I can be happy. I look forward to finding out even more where my place is, what my purpose is and how I can honor those things. But some days....some days......I just don't know anymore. Some days it makes me angry, because I just don't want to.

This song filled me up this morning. I feel like it is murmuring words in my soul that echo my own emotions. You don't do it because you are better or stronger or possess something inside that someone else does not. You do it because it is your life and you have to honor it. You need that like you need to breathe. I rise up and I will continue to do so. I am proud that I can and I will. I tip my chin, set my jaw and go about the details of my mission, one tiny, excruciating step at at time. I'm not done yet and that is the primary thing to pay attention to. I'm not done'll rise up. It isn't always this hard. It isn't always this painful.

Sunday, March 27, 2016

For the Beauty of the Earth 2016

Another Easter morning, this one kissed with a cool breeze and overcast skies.

Years have gone by. I am no longer shocked by the depth of sorrow and no longer fight the quiet presence of hope on this day. The world is a heavy place, not just for me, but pretty much for everyone. I am not unique in my pain nor my sorrow nor my burdens. There are other losses and heartbreaks, more of them than there are people in this world. There are just as many beauties to the earth as there are heartbreaks and sometimes my mind is more drawn to one or the other. Their mutual existence, which for so long confused and angered me, no longer does so. I have learned to live in a state of unknowing and have come to internalize that it really doesn't matter if I understand. I don't have to understand. I just have to trust and when I cannot trust, I have only to follow my internal guide of what is right. I am only here a short time and I can only do what I can do, which is small in scale and personal in nature. I am grateful I have an outlet for my grief and glad I have a quiet faith that things will not always be this way. Among the brokenness of this world there are many perfect gifts. I pray the years continue to draw my focus to the wonders of the small things, to cherish the simple things, to trust in childlike faith and to serve the marginalized and the hurting with love, grace and humility. I pray for the well being of my family and friends, that they have inner strength for the challenges that will without fail touch each of them over time and I pray they have a peace inside to reach into to warm themselves when the evil in this world leaves them cold. I pray more than anything that the way I treat people and the way I live reflects kindness and love and I pray for forgiveness when I fail. I pray I embody the hope that I too hope to find. Some days I wish so hard that it were my time. On those days I hear the patient whisper in my heart of "not yet. You have more to do". And I lean into that and look for opportunity.

Happy Easter to all and to my Joseph. I look forward to seeing you again and I miss you every day.