While You Were Sleeping

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I am watching you sleep, your breathing heavy and even. It is only mid day and you’re napping for the second time since you woke this morning.
I know this is your body’s way of conserving your energy, it’s also your body’s way of telling me it’s slowing down, that functioning is becoming a more difficult task.

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Dear friends of years gone by: you’ll always have a friend in me.

 

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This is a complete departure from my typical blog content, but be it nostalgia or just the emotions of life spilling out, I wanted to take time to acknowledge something special: friendship. I am so fortunate to have some very deep and meaningful friendships today that know I could not be surviving without.

I have also been fortunate to have had some beautiful friendships with people who today I may not know anymore, who may now be a casual acquaintance, or even a perfect stranger. And this post is for them.

 

Dear friend of years gone by,

Life is a strange and wonderous thing. It brings people, experiences, circumstances, and relationships in and out of your life constantly, and sometimes, like it did for you and I, it separated us.

Not by malice or by conflict, but by sheer changing of directions, our lives took us down different paths. What was once an every weekend sleepover, or daily conversation, a nightly country cruise after work or class, a get together with our young children, nights out on the town, or commiserating over our troubled relationships, is now a casual glance at each other’s Facebook page or liking of each other’s posts and life events. You are living your life, have formed new bonds, maybe found a new significant other, a new purpose in life, and I have done the same. Because that’s life. People change, and grow, and sometimes, like in our case, we didn’t fit into each other’s changes.

But I want you to know; even though life took us different ways, I have never stopped caring. I have never stopped hoping that your life has ended up being what you dreamed it would be, I have never stopped wishing you all the best from afar, I have never stopped thinking of all the fun we had together when we were so close we felt like the same person… And I have never stopped wondering if you think of me too.

We may not be close now, but because of your presence in my life, I am who I am today. Whether we were childhood friends, high school friends, or friends as young women, I can assure you that that time in my life was better because you were a part of it. Time may have distanced the friendships, but the memories are forever.

Thank you. For loving me, for being my confidant, my partner in crime, my shoulder to cry on, my saver of sanity…thank you for being my friend. Thank you for making my journey through life better and brighter and more fun…I will always be grateful for you, and if you ever need a friend, I will be here for you. Because I loved you then, and I always will.

 

Ashley

 

 

Who I was, who I am, who I’ll always be

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The day I have been dreading is almost here. Both slowly and all of sudden it has come, and very soon I will have to face it: the one year anniversary of the day my son left this world.

I have survived almost an entire year of firsts. Days that were already bittersweetl because we lived with “is this the last one” in the back of our minds, seemed really just bitter. But somehow, I survived. By outward appearances, it likely seems that I am doing quite well, and sometimes I really do feel like I am doing well.

But I am still a grieving parent. I will always be a grieving parent. This isn’t a phase, this isn’t something that will ever go away. That is part of who I am from now until the end of my life. The person I was up until September 9, 2015 is a memory now. She was shattered to the core on that day.  And while pieces of who I was “before” have remained intact, some pieces still don’t fit. Some pieces are shaped entirely different.

I use to be someone who wanted total quiet and darkness when I slept. That is no longer the case. Even almost a year later, I need background noise, like a familiar TV show, to sleep. Because alone in the quiet, my mind will always drift back to the moment I knew my son was gone forever. It will frantically try to recall every detail it can remember from that day and I will be tortured by an image that will be engrained in my brain until the day I die: my son’s perfect, beautiful face and the way it looked the last time I saw sunlight wash over it as the medical examiner put him in the back of a hearse and drove away. And I don’t know if there will ever come a day when dark and silence doesn’t conjure that image. I don’t know if I will ever be able to make peace with that.

And though I do find joy in life, and find reasons to smile and genuinely feel happiness now, I still feel that more often than not, I live on the brink of tears most days. The smallest and most insignificant things can breach the emotional dam and release a flood of tears, at any time, in any place. A song, a certain phrase, a child Landon’s age, eating a cookie…anything and everything. My heart is still so tender and my emotions still very fragile and unpredictable. I am also unsure about when or if that will change.

Gene Wilder passed away yesterday, and I listened to “pure imagination” in bed and ugly cried. Landon loved Willy Wonka almost all of his life, and the death of its star felt like a piece of my connection to Landon died too. Logically I know that’s not so, but as I said…my emotions are still fragile and I never know what will trigger the break in my dam.

I can’t even count how many times I’ve thought or said “I can’t believe he’s gone.” So many days it still seems impossible. I climb and re-climb the stages of grief so much that sometimes, it’s just exhausting. I still bargain a lot. Because what I wouldn’t give to have had more time. To have had one more kiss, to be able to see that whole face smile and hear that musical giggle just one more time. And although I know that my heart will feel that way no matter how much we had, I can’t help but to wish for it. My heart still aches for my child. I am still angry that this was the hand that he was dealt in life. I am still angry that “what if” games in my mind are like Chinese water torture I can’t escape from.

I don’t know that I’ll ever have acceptance. If I do, I can’t see that right now. While I can make peace with certain things, and take comfort in others, like knowing he died before the suffering years found him, he still died. And I don’t know how I will ever accept that what happened to my 9 year old son was okay, or right, or fair, or for the best. I do have acceptance of the grief that comes with such a significant and life altering loss, but acceptance of his death is another thing entirely, and I’m just not there.

I am still here, but I’m still figuring out how all the pieces fit back together. I’m trying, and with the support and help of my amazing family and friends, I think one day I’ll get there.

Thank you, to anyone who has offered their hearts, their love, and their support over the last 356 days. You could never know how much it has meant to me.

 

The other side of infinity

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I’ll love you to infinity and beyond, I’ve always told you. And it will always be true.

Now that you’re gone, I’m living on the other side of infinity. The side where I am destined to walk this earth without you. The side that has separated our physical presences from each other. And the pain of living with that truth is one that will never have an end. Like a diamond, it’s hard and sharp, and it’s intense shine and luster are never dulled.

The pain and the grief are part of who I am now. Like a personality trait acquired through life experience, my grieving for you is part of what makes me who I am without you.

I have had to learn to love you in a new way here on the other side of infinity. What was once cuddles and giggles, kisses and hugs, cookies and adventures, is now smiles through tears at the mention of your name, remembering with heartache and longing, and carrying your legacy into my new and uncertain future.

Loving you now is honoring your life by living mine. It’s pushing beyond the guilt of having outlived you and seeking out the beauty in life that I wished we were sharing. It’s doing things that make me think “I wish he was here” or “I wish he could see this,” because if I do those things, then so do you….because I carry you.

I move forward so that you do. Because as difficult as living without you is, it is unbearable to think your legacy doesn’t continue. And it is my duty and my privilege to carry your torch and continue to help others see the gift of life and love  by sharing you with them.

You brought a joy to this world that is far too bright and beautiful to ever let fade away. So with a broken heart and tears always under the surface of my smile, I will spread the light that was your life into any darkness that I find.

Like a pilgrim finding their way in a new world, I explore the other side of infinity. Unsure of what’s coming on the horizon, but always knowing that your light will guide me to where I need to be going.

And come what may on the other side of infinity, I can only be thankful that I had you. That you were mine and I was yours. That life brought me a love so deep and pure that even infinity can never erase, even if I’m destined to live on the other side of it now.

I love you baby boy, and I hope I’m making you so proud, to infinity and beyond.

 

Shedding light on the darkness I never though I’d share

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September 17, 2015

Today I am held together only by the literal physicality of connected bone and tissue. Who I am, or was, lies in tattered shreds in the place where my soul resided. What’s left is something I can no longer recognize.

The people have gone, the funeral is over, and I am left in silence. A stranger inside my own mind. Who am I now? I’m not sure I even want to know. The broken pieces that are left, the few that he didn’t take with as his light faded away don’t seem to fit together. I’m not sure I even have the desire to try and make sense of them.

They say that I am strong. If they only knew. If they only knew that the strongest part of me that exists today is the desire to just let go and be done. All the fight is gone. Darkness is the only place that feels safe for my wounded soul.

The only light that exists in my world right now is the fiery ache that has burned right into my bones. The pain, like an ugly bruise, pulses where my heart sits.  It feels as though it would be less painful to just not breathe than to actually attempt a full breath.

And each breath feels like a bretrayal. How can I exist in a world that now only knows his memory.

I am not living, but exsisting. From one moment to the next, surviving because of the autonomic function of my body. If this painful, lifeless existence has an end, I can’t see it.

I’m wearing a mask to hide the face I can’t show the world. A world that at this point in time I just can’t face. I want what can never be had, and today I am done.

 

 

 

I wrote this a few days after Landon’s funeral. They are words I never intended to share, but as I came across this in my drafts section, I knew in my heart that I needed to share them. I needed someone very special to me to see…while the ache of this loss is monumental and earth shatteringly unbearable, there is life again. And while you may always come back to visit this place on your journey through grief, it is not a place you live. Love you, C. So Much.

 

 

Dear Sanfilippo Syndrome

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Dear Sanfilippo Syndrome,

It’s been six years. Six years since we learned of your abhorrent and unwelcome presence in our lives.

And in those six years, you have changed every aspect of our lives. Because of you, everyone and everything is different. The rage that lives deep in my bones because of what you have stolen from us, from them, has enough force, enough energy, to rival the power of the sun. The ache that has taken residence inside of my soul is so heavy that even getting out of bed seems less possible than breathing under water at times.

Because of you, I have watched two of the most innocent and loving human beings to ever grace this earth lose pieces of who they are and who they could have been every single day. Because of you, everything happy has been tainted with fear of what’s to come and longing for what has been lost. Your destruction in the lives of those you touch knows no bounds.

You killed my son. A child whose light burned so bright, whose spirit was larger than life, whose laugh could fix everything. You killed a child who stole the heart of every single person he knew. A child who never deserved to know of your existence. And as if that weren’t enough, every single day you slowly twist the vice you have fixed around our living son. I watch, helplessly, as you inflict your deja vu of pain and misery on yet another of my most precious treasures in life.

How dare you. How dare you continue to take from us such pure and innocent beauty. How dare you rob this world of a soul so precious. How dare you slowly steal a child who has never hurt anyone, who loves and lives life in the most gentle way. A child with not even an ounce of malice in his being. You sicken me. I have never hated anything with such passion as I hate you.

But I want to tell you something. As much as you’ve taken, as much as you have tore into the depths of my soul, my being, and my life…you will never take everything. I will never let you have it all. Victory will never be yours.

You can never take away our love. Because even stronger than my hate for you, is my love for them. You can never erase the memories, the experiences, the strength and united front we have presented against you in resolve to make the most of the time we have. You may win the battle for their health, and even their lives, but you will never win the war.

Because even after you’ve stolen our boys, their legacies will always live. And as much as the pain rips through me at the thought of facing life without them here, I will fight on. I will find happiness, spread love and hope, and I will do so carrying them with me every step. And you can never stop that. Your power is no match for the love and commitment I have inside of myself to make sure that someday, you no longer exist. You are not stronger than my will to make sure my sons lives mattered, you are not stronger than their meaning.

Because You can never take away what we have built in spite of you. You can never silence the voice I use to shout light into the darkness you attempt to spread. You can never have my will to keep living and finding beauty in any moment I possibly can.  I will live on, continue to find happiness, and love, and remember my sons and their amazing fight with a smile until I take my last breath, all in spite of you.

Your days are numbered, Sanfilippo Syndrome, but my love and my resolve, and my sons’ memories and legacies  will live forever.

Take that.

 

 

Unspeakable words

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The ache in my chest today for my baby boy is so unbelievably unbearable. Today, last year, we had what would be his last birthday party. It wasn’t his birthday, but it was the perfect day to celebrate.

And as the memories flood through me today…I can’t even put it to words. I knew today would be hard, but I never imagined how much so.

I want to talk and reminisce but my heart aches too much to make words come out. I feel literally paralyzed by the ache in my chest today.

I want to take Blake and Gabe out and make the day special for them, and I am just frozen on this couch, unable to move, barely able to breathe.

How? How can a child, who was so full of life, who never had a face that wasn’t smiling, who embraced everyone and everything, be gone? How can this be real?

Landon was just…the epitome of joy. And I feel like all the joy as been sucked from life today.

I can’t even theme this post with a silver lining. Today I write because it hurts too much to speak and what I’m feeling inside is just suffocating.

Blake and Gabe: I’m so sorry that mommy just isn’t mommy today. I’m sorry that the sun in shining and we are sitting inside. Mommy will try harder tomorrow.

Landon: I would give anything to see your face today, to hold you in my arms, and be watching you snatch cupcakes off the counter and eating them in a single bite. Not a day goes by that my heart doesn’t hurt for you, but today…my heart is bleeding for you. I miss you so much. Today my ache for you is something so powerful that words can’t do it justice. I love you, to infinity and beyond.

Tuck Everlasting

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This week, our MPS community was utterly and completely shocked and devastated by the loss of an amazing young man, Tucker. And for so many people in our little family, this passing has been yet another sobering reminder….no matter what we’re told when our children are diagnosed, we just never know how it will go, or when our child’s time will be up.

One day can be a perfect, sunny day spent hanging out as a family and cuddling, and the next morning it can all be over.

And on Tuesday morning when I woke up and saw that this is what happened to a young man beloved the world over, all the breath left my body. I felt sick. I was in total disbelief. And I have no doubt in my mind that this was the reaction of so many who read the very same thing.

Because in our community, every loss is our own loss. They say it takes a village to raise a child, and this is taken literally in our MPS family. We share intimate details of our lives with each other that we may not share with anyone else, we go to each other for advice on deeply personal and difficult medical and life decisions for our children. We build real world bonds with other families and adopt them as just that…our very own families.

Tucker was not my child, but I loved him as if he were. And you’d be hard pressed to find a parent in our “family” who didn’t feel personally connected with Tuck, regardless of whether or not they had the opportunity to meet him in person. We watched him grow up, we saw his accomplishments, we support him and his family through their struggles, and we felt like we were part of his life because of it. And we were. That love is real, and deep, and true. And now, the grief we feel in his leaving is equally as real.

Tucker was not my child, but I cried an ocean of tears for his passing. I have tossed and turned at night wondering if his mommy and daddy and brother are sleeping and eating and taking care of themselves. I have racked my brain trying to think of ways I can be of help to them in this time of complete and total devastation. I have selfishly cried knowing that I will never again receive the wettest, most innocent kisses a child could ever cover your face with, I will never again see those “soul eyes” that tell you everything his words could no longer say, I will never watch his family look at him with more pride than I think I’ve ever seen someone look at another person. That is all gone now. And that just seems impossible.

The funeral is over, but the grieving of this amazing boy, our Tuck….that will be forever. As an MPS family, it is now our duty to carry Jason, Casey, and Dylan into the next phase. We will need to listen when they don’t have the words to explain how broken they feel, we will need to help them carry the torch that is Tucker’s legacy forward by always remembering and honoring his beautiful life, and we will do this with hearts full of love and understanding, with pride and deep gratitude for having had the honor of being part of the life of Tucker. Because we are a family, and family is forever.

Jason, Casey, and Dylan. We are here. We will always be here. You will always be a part of this family. Thank you for bringing Tucker into our lives. It was truly a privilege and honor to watch him grow, to know him, and to love him. Lean on us now. We will carry you when you when you feel you just can’t take another step, because we love you and that’s what family is for.

The circle of (grief) life

Robert Kondo - Beat Board: Goodbye Andy - Impaginazione di Jason Katz e John Sanford - TOY STORY 3 (2010) - Dipinto digitale. ANSA / UFFICIO STAMPA PIXAR +++NO SALES - NO ARCHIVE - EDITORIAL USE ONLY+++ +++FOTO DA USARE SOLO IN RELAZIONE ALLA MOSTRA+++

It has been 9 months. And this seems so significant to me for some reason. Landon left this life on the 9th day of the 9th month in the 9th year of his life. And here were are 9 months later, still living in disbelief at times, but none the less still living. Still moving forward and still loving our boy as fiercely as when he was here. Still carrying his memory and his legacy, still sharing his life, and of course, still missing him. And those are things we will always do. Always with a heart that isn’t quite whole, but always with love, with joy, and with appreciation for having had someone so outstandingly beautiful in our lives to love and to miss.

The grieving process has been….strange. And unpredictable. And a million other tiny little things. Continue reading

It didn’t happen for a reason and that’s okay, even though it’s not.

 

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I haven’t written in months. The “writer’s block” I’ve been experiencing isn’t for a lack of having thoughts constantly swirling through my mind that needed out, but more of lack of knowing how to put them out. And maybe that isn’t even true. Maybe I’ve been afraid of how those thoughts may be perceived, how I myself may be perceived for feeling the way I do.  But if I’ve learned anything through all of this, it’s that life is short, and living it for me, in a way that I feel is authentic and true to who I am and who I want to be is what’s important.

From the time my boys were diagnosed, and especially since Landon died, people have had plenty of words of wisdom and platitudes to offer to try and comfort me or help me make sense of what has happened and more importantly, why it happened. And I 100 percent believe people have said the things they have with the sincere intention of making me feel better or to try and comfort me in times where comfort was impossible. The thing is: those platitudes that have been engrained in our minds for comfort and meaning have never been helpful, they have never made me feel better, and in all honesty, they have often times been just as upsetting as the situation itself.

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