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.