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.

 

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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.

 

 

The circle of (grief) life

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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

Down The Rabbit Hole

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It has been quite sometime since I blogged. So much has been packed into the last few months, and I have yet to blog about Landon’s fantastic trip to Disney World, which as I said, was fantastic and memorable in every way. But right now, my mind isn’t in a place to do that entry justice. My mind is in a place that I desperately want out of.

This year has gotten off to a rough start for our MPS community. In the first 19 days, we have lost 2 boys, another is fighting for his life, and a beautiful young lady may have just had her last birthday on Earth, as her body is tired and nearing the end of its fight. As parents of these children, I know that we all take the lose of and struggles of our kids very personally and always wonder when our turn will be. Because it’s inevitable. We all face the same fate and it’s not a matter of “if” but “when.”

 

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