Thursday, August 3, 2017

This Grief Journey

Grief is a long inward journey. This has been mine lately.

August 3rd, 2017
It does not matter the state I am in, when I begin to read the words, my heart is transformed. And oh how I read of Kreed in these pages- and my own life too.
When I think of him I feel- I remember, I have to go on.
To love the world the way he loved the world.
To feel the world the way he felt the world.
To experience what this world had to offer. 
But that's not always so easy- I miss the way he experienced this world.
The way he FELT this world.
Without Limits.
I get locked into numbness and distracted by the comings and goings of this world. Do that. Don't forget this. A million things to do. We forget to just be.
To just experience the wind whipping across my body. The sounds and stillness of the creek. The wonder and beauty of the canyon at sunrise. The hummingbirds call and small body darting here and there.
We forget that sometimes it's enough to just exist.

To feel peace. Happiness. Solace.
To be glad we just exist in this world.

Oh do you have time
to linger
for just a little while
out of your busy
and very important day
for the goldfinches
that have gathered
in a field of thistles
for a musical battle,
to see who can sing
the highest note,
or the lowest,
or the most expressive of mirth,
or the most tender?
Their strong, blunt beaks
drink the air
as they strive
not for your sake
and not for mine
and not for the sake of winning
but for sheer delight and gratitude—
believe us, they say,
it is a serious thing
just to be alive
on this fresh morning
in the broken world.
I beg of you,
do not walk by
without pausing
to attend to this
rather ridiculous performance.
It could mean something.
It could mean everything.
It could be what Rilke meant, when he wrote:
You must change your life.
- Mary Oliver, Invitation

July 31st, 2017
As I began my hike today, I passed by some geese I don't normally see. Instantly I thought of this poem:
Wild Geese
You do not have to be good.
You do not have to walk on your knees
For a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about your despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting --
over and over announcing your place
in the family of things.
-Mary Oliver

And I thought of Kreed who loved what he loved and felt joy simply- for the world was a wonder to him. Now I hike daily in the early hours of the morning finding ways to love again and see the beauty of the world. The day he left us it felt like the dark clouds came rolling in and began the storm. It has raged over us for over a year and I didn't think or know if we would ever get through it. I still don't know. But the mornings I hike and stare up at the sun and feel it's warmth and see the beauty of this world, sometimes I wonder.
I wonder if we just start again.
I wonder if we find joy again.
And how.
I wonder if we find happiness.
And if it feels different.
I wonder how we live in this world without the most joyful and innocent of souls.
And I sit and stare out over the vast expanse of nature before me and know at the very least, we must keep going. We are here. Alive. Breathing. The world offers itself to us and somehow we have to find ourselves again.

July 30th, 2017

My grief journey and daily musing while hiking in the early hours of the morning. I wish I could have taken the courses in college now versus then. While I was a psychology major, I took a healthy dose of English classes too. But then I was naive and unknowing and didn't understand what I was reading. I had zero life experience to understand the value of the words and the impact of them upon my heart.
Then I met Kreed. And for years I didn't read nor did I need to because we were experiencing what people write books about. I watched him in the sun and the joy of his hopping through the forest or the way he stopped and felt the wind whip passed his body. Or how he stared at the wonder of a waterfall. Or pressed his face into the cool water, wanting every sense he had to feel what nature had to offer.
I hike now in the early morning, maybe in some attempt to find him there. To feel what he felt. To see what he saw. To hear what he heard. To immerse myself in the feeling of being in such a beautiful place that only offers itself in all its majesty and nothing more. And I search for the joy he found in those moments. I miss him.

Border Line
I used to wonder
About living and dying-
I think the difference lies
Between tears and crying.
I used to wonder
About here and there-
I think the distance
Is nowhere.
-Langston Hughes

Tuesday, June 6, 2017

He Is The Only One

Guest Blog from Kreed's Grandmother Tammy:

"Life can only be understood backwards, but must be lived forward." - Anonymous
Whenever I see this quote, it always makes me think of Kreed Joshua. As doctors and specialists "look back" at Kreed's life and research the gene that wreaked havoc and destroyed his body, Kreed LIVED life always moving forward.

Of course, I do not need to read a quote to be reminded of, or remember Kreed! I have a kaleidoscope of memories of him! Not only in my mind, but as I look around my home and see the many pictures that we so proudly display, and the mementos that he gave me, his Grandma Tammy, or the things that Erin and Carie "re- gifted" me after we lost him. I have a small Christmas tree that I set up in honor of him and his love of the holidays that is decorated with the Peanut characters that he adored. Books that I gave him surround it. Cards that he sent me and signed hang proudly on my wall alongside the  pictures and cards that my other grandchildren gifted me. As any grandmother can attest to- - - the gifts received from the grandchildren are so precious and become treasured mementos. Kreed loved the outdoors, so I have dedicated a part of my garden in honor of him as well. I painted a bicycle orange, his favorite color, and have a Superman sign there as well. Kreed was a Superman, a real-life superhero.

Kreed Joshua "bounced" into my life less than a decade ago, but the impact that he created in my life will last forever! To know Kreed was to LOVE him. His charisma drew you to him instantly. He had a smile as wide as the Mississippi River is long. He could be as loud as a race car going 100mph, and flashed a colorful personality that was as vibrant as a Fourth of July fireworks display. There was never any doubt that when Kreed was in your presence, he was not ignored! His playfulness was contagious! Exhausting at times too, but his heart was genuine.

Although Kreed could not "speak" in words what he felt, he surely found ways to articulate his desires, and it was always with much enthusiasm. Whether it was to go out to eat (always!), go for a walk, go shopping, go out to play, go boating, etc., one thing was for sure, Kreed wanted to GO! His zest and excitement for things could sometimes generate lively displays of various emotions. This would cause stares from fellow shoppers and restaurant goers, but Erin and Carie took it in stride. These animated displays of pleasure and displeasure never kept them from exposing Kreed to ALL kinds of wonderful new adventures! He had the privilege of going kayaking, boating, tubing, horseback riding, bicycle riding, camel riding, hiking, swimming, and flying across the country, just to name a few! He was eager to try new things, and definitely had, NO FEAR!

Kreed Joshua, I miss you immensely. You inspired me and many others to enjoy life to the fullest. You knew that "tomorrow" always brings a chance to make new friends, eat more fries, learn new skills, smile and giggle, cuddle, and bounce! In a play on words from Tigger, the fun loving, always bouncing character from the Classic Tales of Winnie the Pooh... You are bouncy, trouncy, flouncy, pouncy, fun, fun, fun, fun, fun....

             But the MOST wonderful thing about Kreed...he is the ONLY ONE!!

Saturday, January 28, 2017

When I Want to Die

When I Want to Die 
So many things in our culture seem to be taboo- such as grief and everything that goes with it. We write about our grief daily and don't shy away from talking about it. Even more taboo than talking about sadness, grief or depression is when you want to die because the pain is too much. But it's a reality when you lose a child and the pain is overwhelming and suffocating. We were never shy about posting about Kreed and his struggles and I'm not afraid to post about our struggle now that we've lost him.
More days of the week than not I want to die. I think about it, sometimes I wish for it and the thoughts remain like a dull ache. We were not prepared for Kreed's death and had thus far devoted our entire life to him right down to the house we bought. I gave up my career to assist in caring for him and ensuring he lived an epic life. We never stopped trying to help him and give him a better life. And then suddenly he wasn't here. The pain was overwhelming, suffocating and most days we feel like we are drowning. To lose a child is hard enough, but to lose a child you spent every waking and often asleep moments with us, gave us a whole new level of pain. 

So we battle depression, sadness and unkind thoughts toward ourselves. We feel alone most of the time and wonder what the point is. Our joy and happiness is gone. Even if we manage to find slivers of happiness in this life, it will always be shadowed by his death and our pain.
When I want to die, I have so many thoughts. I'm aware that while we are still living and breathing we are helping other children- as a behavior analyst and through the newly formed Kreed Foundation. I think about what we accomplished with Kreed and the legacy I want to continue to share. 

When I want to die, I fight back with one thought: Kreed will not be forgotten. We must go on to spread his message and ensure that Kreed continues to inspires others for years and years to come. When I want to die, I think of Kreed and the life he didn't get to live, that we must now live for him. We must carry on to make sure this world understands the need for communication devices for ALL kids and adults who need them, not just the ones insurances and schools deem "ready" or "qualify" for one.  We take this depression and sadness every day, this heart break, this soul tearing and try to make sense of it all.

This all started with a boy who found his voice and will continue with his family who will give others a voice. So we continue to write about our life, no matter how sad, no matter how we feel, no matter if some days we wish to be in the ground with him. He was our heart and soul and always will be. 

Thursday, December 29, 2016

The Ghost

The Ghost

Every day I live with a ghost. I get up, get in my truck and go to work. I drive and the tears fall. I drive with a ghost. I can count on one hand the number of times I drove a car without Kreed. He was always there. We always had an adventure or place to go. We jam out to music, have conversation and rock the car. Now I sit with ghost. 

I go to work and be with kids just like him and have to help them, even though I couldn't help him, I couldn't save him. He's the ghost there with me, in everything that I do. And all I want is for him to be back and having these epic adventures with me. Teaching him about the world and him teaching me to enjoy this life we have. Instead his ghost shadows everything I do. 
I sleep at night and am still plagued by his cries, his rages, his giggles. I still have all the alarms on my phone listed but no longer set. My nights have no purpose anymore. 
I come home from work to the emptiness of our house and have no idea what to do most days. My whole world was his needs, planning for him, hanging out with him, helping him and doing things with him. Now his ghost just sits with us in the room he barely lived in.  

No one, and I mean no one but someone who lost a child can possibly understand this. And then, it's even more with a special needs child who was your everything and loved life so much and found so much joy in his world that you couldn't help but feel it too. 

Now all we have is memories. Holidays become nothing because he was the reason we would go all out. I can barely be on social media. I see parents talking about how they can't wait for their kids to go back to school and all I want to do is shake them and tell them- don't you know! Life can change in an instant and you will have no more days with your loves. Hold them tighter, hang out with them longer, enjoy the moments! Don't wish for them to be out of your presence because they could one day be permanently out of your presence and you will wish you had held them longer. 

Find an adventure, teach them more, have more conversations, hold them longer, kiss them more, enjoy every moment your given because on any particular day at any particular time it could be gone. I would give up everything to have one more moment. A second. Anything. 

We put Kreed above everything and I will never regret that. As we taught him and went through wicked hard times, he learned and learned to love his life despite any disability. He proved you could do anything, if you just tried. We were never afraid or if we were, we did it anyway just to get over the fear. 

But now. Now, we are left with his ghost and nothing but memories. We can't reach out and touch him. We can't hold him. We can't see him. We can't hear him. And we are just left. With this massive empty void to fill that nothing does. It will remain there forever because you can't fill his shoes. He was so joyful and taught so many so much. Most of all, he loved his life. 

So every day I get up and spend my day with a ghost, knowing all I have is pictured and videos to hear or see him and I'll never get to hold him again. We will never make another memory with him. I go to sleep at night and spend the night with a ghost and phantom laughs and sounds. 

People see me smile and they think I'm fine. Well there's that grin, wow they just be doing so much better. Bull shit. The smile is to comfort others while we are silently grieving inside and struggling to make it through every day. You eventually become numb in this grieving process because the sadness becomes so overwhelming you can barely survive it. Especially at holidays. The sadness and grief is so big, if you let it out, you fear you'll never be able to stop crying or be able to seal up the emotions again. People aren't prepared for your emotions because they have no idea the emptiness you live with or how hard it is to function every day. If they did understand they wouldn't say stupid stuff or wouldn't turn their back because we all seemed fine. 
We will always seem fine and plaster that smile because how else would we possibly get out of bed every morning?

With his ghost. His memory. We continue on because we refuse for him to be forgotten or refuse for his life to not have meaning. We have to be the ones to make sure his light still burns. But inside we die a little every day. But we smile and function.




Tuesday, November 15, 2016

The Quiet

The Quiet
We are surrounded by the quiet. Where once was a young man's voice of happiness and joy and at times of pain...there is now only the quiet. 

I let the six month anniversary of his death pass without a word because I want others to feel how it feels- the quiet. 

What I wouldn't give to hear his sounds in the night. The sounds of the morning. The sounds of his living in each of our days. What I wouldn't give to sit back and watch his ingenious ways to flood a bathroom, make a giant mess eating popcorn and chips- oh the sound of his crunching of chips, how I miss thee!

Instead we have the quiet. 

Six months ago we lost him. A year ago his breathing difficulties began, as he silently marched toward his death without a soul knowing for months. While the depth of his issues was unknown, we were hearing him loud and clear as his pain screams began. We just didn't understand. We tried to protect him. To understand. To make doctors understand. And through it all, we made sure he was living the most epic life possible. 

I never knew why my drive to give him such a life was so high- I just had the constant gnawing, the constant feeling that I needed him to live an epic life. We wouldn't hide away from the world out of fear. Instead we would teach- teach him the feel of the wind upon his face during a hike, 
the splash of mountain water from a waterfall, 
the taste of every French fry his heart desired,  
the smell of his favorite sugar cookies whenever he wanted and make sure he experienced everything he ever wanted and more. We made sure the world wasn't scary a place for him by taking him into the world and helping him understand it and live within it. We made sure our boy had a voice so that he could navigate this world and tell the world his story. 
Even in his last days he was learning- to go down to the snack bar at the hospital, pick out his chips, scan it, swipe a debit card and go! He was so thrilled to be independent. 

And it's the quiet. The teaching is done. The joy and happiness has left us. Living an epic life came to a screeching halt.  

Six months has passed and we remain broken, heart broken, soul-torn. The waves of grief are unending and we do our best to just remain above the surface, constantly fighting the urge to let it take us under.

Six months has passed and we still are not used to the quiet. 

Six months has passed and we would give anything to hear the sound of his voice, the feel of his kisses/licks, his nighttime snuggles, his love of all things French fries and pizza and his incredibly brave and joyous take on life. 

Kreed taught us all to truly live, even in his last days. He will forever be the bravest person I will ever meet in this world. When the grief waves come crashing down and sends us spiraling down with the under is those times I remember our purpose now on this earth- ensuring Kreed's legacy lives on and his life continues to inspire others to find their voice. The only way I can deal with his death is making sure his life had meaning- that he continues to show others how to use their voice and live a no limits life.  
But what I will never get used to is the quiet. This six month anniversary came quietly. Snuck up on me and overwhelmed me. So I remained quiet. Unable to know what to think or feel. But here we are. Six months passed. Our sadness has only grown and the sadness deepened. 

And we continue to live with the quiet, longing for him. 

Thursday, November 10, 2016

Death is Not Beautiful

Death is not beautiful. It's not a happy event in a life. It's the end of a life. And for a mother who loses their child, their heart, and their's the most horrific pain that would or could ever happen. It's not about the fact that they aren't in pain anymore and are now wherever your religious beliefs thinks they are. Because all a mother wants is their child here with them, not suffering and enjoying life with their family.  But that reality is gone and replaced with a vast emptiness that is infinite and a pain that will never leave you and cause a pain unknown and inconceivable to anyone that has never experienced such a child loss. 

Death is not beautiful. Watching our son bravely fight his illness despite the immense pain it caused him, only to stop breathing and lose his organ function and in his last days and hours, struggle to breathe, hearing that horrible sucking noise coupled with a hoarseness and labored breathing sounds that lets you know the end is near. Watching them lose the ability to swallow and unable to take anything by mouth that once filled their heart with joy (French fries!)  and the life continues to seep out. Your once joyful child is facing the end of life and you are completely unable to save them, shelter them, protect them or keep them with you for even a second longer than their body will allow. 

Death is not beautiful. You hold your child whose life is leaving and it's ugly, horrible, heart breaking and begins the soul tearing. The heart breaking in two. You hold your child and hear the last time their heart is ever going to beat again. Nothing prepares you for this. Nothing comes close to this feeling and living this nightmare. Your child's heart stops beating and yours continues to beat a now shattered heart. 

Death is not beautiful. We aren't happy our child died and satisfied that they are now with "cool angels" (yes someone actually said this to a mother who just lost their son). We are devastated beyond belief. Shattered. Broken. We cease to be the people we were and begin a completely new life forever changed into someone new. Someone who now will live a life with our souls torn, our hearts shattered and a sadness that will never ever leave us and the feeling of our life being incomplete forever. We are angry. We are pissed. We are fucking broken beyond anything anyone can ever imagine. And no I don't care about YOUR feelings or if you think I should speak kinder or think of others or I have grieved long enough or I should be happy they aren't suffering and are with whatever belief YOU have. It's about US and OUR CHILD who is no longer with us, who suffered and died after a braver fight than you can ever imagine or conceive. Your thoughts on his death don't matter and they don't make me feel better. Nothing will. Nothing needs to be said because nothing will touch us or make a difference. Your thoughts that make light of his death diminish the life he did lead and the love he had for living. You want to know what to say to a grieving mother? Nothing. Instead do something. Provide a meal. Provide company. Be there if they want to talk, but don't impart your beliefs on it. Let her vent. Let her scream. Let her cry. Get involved. Do something. If you are going to say something, any comment related to a positive comment regarding death based on your religion is not helpful and actually more detrimental than saying nothing. Or that they aren't suffering anymore and how that must comfort us. No, it's not fucking comforting. He should be here, better and living the life he loved. 

Death is not beautiful. It's not a fairy tale. To you it's not real so you visualize something to comfort yourself but it doesn't comfort the mother who held her child until the last heart beat after watching them suffering for hours, days, months and/or years. Your visualization of what you think death is or was is not our reality. The reality that keeps us up at night, haunts our dreams and become our waking nightmare. Your visualization of what death is doesn't stop our tears from falling and the sadness that follows us day in and day out. Your visualization of what death is doesn't stop the emptiness we now live with that makes us think about ending our own life to stop the pain. Your visualization of what death not reality or even close to it and not comforting for even a second. 

Death is not beautiful. Death is not awesome. Death is not a positive thing in any way, shape or form. And telling a grieving mother who held their child through the end of their life, after fighting for their life and watching them suffer and bravely make it as long as they could, demeans them and their child and the life they lived. We should be sad beyond any sadness ever known, angry beyond any anger we've ever felt before and feel a heart break and soul tearing that nothing will ever heal or be fixed. Because that IS what the death of a child causes. 

So please, for grieving mothers everywhere, stop saying death is beautiful or something positive. It's not the loss of a parent, spouse, sibling, friend or any other kind of loss. The loss of a child is unlike anything anyone can ever imagine and the pain that comes from such a loss in unimaginable and known as the greatest pain any human being can feel. That is death. It's horrific, heart breaking, sad, angry, devastating, excruciating, crippling, torturous, agonizing and not something a parent comes back from. 

Death is not beautiful. My child's life is beautiful. His smile was infectious and his wonderment for the world, the most joyful thing I've ever seen in my life. He was brave through the end and handled his illness with more grace and joy than most people can ever imagine. Most of all he lived and loved his life and didn't want it to end and had a heart stronger than anything this world could throw at him. 

Death is not beautiful. My child's life is beautiful. That's what should be celebrated and remembered. 

Wednesday, September 14, 2016

When he can't tell me

Originally posted Sept 14th, 2015

What’s it like having a medically fragile child who can’t tell you his symptoms or what his body is feeling?

You hold your breath. You check him over every day for any sign of illness, injury and you hope you find nothing. When there is an injury or illness, you hold you breath. You treat it and hope it doesn’t spread. You keep the dark thoughts in the back of your mind from entering your conscious mind. You pray the doctors are right in their diagnosis and are doing the right thing.

You spend a lot of time researching. And hoping. Hoping something will add up. Hoping the symptoms will come together and make sense.

You spend a lot time teaching. Teaching the language of pain. Hoping he will understand and be able to start telling you. And knowing how hard it is to teach your child the different types of pain. And silently crying on the inside when he does tell you the pain he’s in. Knowing every day he’s having pounding headaches and he’s telling you it feels like sharp knifes.

Then you call doctors. You research. You try to put the pieces together. Treatment begins and you hold your breath. You hope it’s the right thing. But you prepare for it if it’s not. 

Sometimes you have to protect your child instead of being able to hug and kiss them. This may be one of the hardest things. When your job just becomes protecting and keeping him from hurting himself because the pain inside himself is too great, you often weep at night for the choices you must make. You just want to hug him and tell him it will be OK and you will make it better. Nothing breaks your heart more than watching him go through this. You feel helpless and try to stay calm and keep searching for answers. 

It’s one thing to be medically fragile, but it’s another thing to not be able to explain your symptoms. Everything is locked up inside his body, and you feel like you have to be a behavior detective to figure out what the symptoms are and the cause of those symptoms. It’s a vicious circle. Through it all, you hold your breath. You love harder than most people can imagine because you never know what the next moment will bring. Will there be a dimple smile and tears of happiness or will it be cries of pain?

So you are often holding your breath. And loving. Loving harder than you ever thought imaginable. And when you hug, you hug deeper, stronger and longer than you knew was possible. And you live, live a fuller life than you ever imagined and cherish each moment your child is well and happy and smiling. 

And you say I love you. Always. As much as possible. So he will always know your love is there and never wavering. 

“When they ask how far love goes, when my job is done, you’ll be the one who knows.” — Dar Williams.