Where to go from here?

I did it, I finished something.....well almost. Out of thirty assignments, I completed all but seven. Given my record for completing things over the last year and a half, I am considering that a success. 

Where to go from here? I'm kind of happy with my little blog, it holds me accountable to something and gives me a platform to express my feelings. I am not sure how it will evolve, but I know I'd like to keep it going. Will it become the place to sell my jewelry, as it was once originally intended? Will it chronicle the restoration of Ruby, my vintage trailer? One thing I can say for sure, I will continue to use it as a place of healing, and to share my thoughts on life without Sam. Perhaps in time I will figure out just where to go from here.

The world can see the shape of you in me ......

As your mommy, I learned that raising a child with a disability is not easy, you showed me what I was made of. If I had a dollar for every time someone told me how "special" I was, or that "God only gives us what we can handle," I could have bought you Legoland. I know this for certain, I am not special, and I believe that God puts us in situations not because we can handle them, but to see how we choose to handle them. Some of us just do better than others.

Were it not for you, I would have never been involved with Children's hospital, and it's Healing Garden. Because of you there is a thirty foot "Sam-O-Saurus" greeting families and staff as they enter, a purple trumpet vine weaves throughout his giant shape. We were brought there for all the wrong reasons, and so much good came out of it. 

You inspired us to raise thousands of dollars for various causes, so families like ours could have a little bit of happiness. Sam's Posse has become your legacy, with it we are "Granting Wishes, and Changing Lives."

You brought so many good people in to my life. People, who were it not for you I would have never met. You taught me to be your advocate, your voice. Before I had you, I used to think that I was a decent person. In truth, you taught me decency, kindness, compassion, and unconditional love.

I have said many times that I believe you were a messenger. The world can see the shape of YOU in me because I got your message.

Grief's Work

And when the work of grief is done,

The wound of loss will heal.

When my dad passed, surprisingly grief did not linger. I don't know why, I loved him deeply and know he loved me. Perhaps it was because I was so busy with Sam, or helping my mom, but before I knew it, the wound had healed. 

With Sam it's been profoundly different. I thought about what grief would be like for me before he passed. Deep grief, a mother's grief. Not my he's in heart failure I know what's coming pre-grief. I'm talking, earth shattering, life changing, my only child is gone grief. I thought I could somehow get my mind around it enough to brace myself. I couldn't. Seventeen months into this, and I have days where I am convinced that grief has taken me on as it's project, and there is no date of completion.

How would you love me in this?

If you were still here with me, I know that you would love me the same as always....wholly and completely. Much like you did after Grandpa died, you would keep me busy from daybreak to dark, and beyond. There would be no time or place for lingering sorrow. We would fill our days with oatmeal, books and puppets, swinging on swings and trips to Legoland. You would make me laugh by feeding pudding to your dinosaur and dancing in the kitchen. You would wrap your arms around my neck and give me a kiss on the cheek. That would be enough.

What does it mean, when you start to forget?

Someone asked me one day, what kind of books Sam liked. As I began to answer, I suddenly could not remember the title of one of his favorites. A book I had read dozens of times, over and over, and I forgot it's name. Once home, I immediately went to his book basket in our living room and rifled through until I found it; "You Can Do It Sam." Are you kidding me? A book with his name in the title, and I couldn't remember it. Who does this? What kind of mother, does this? I beat myself up over it for a very long time. It had hardly been more than a year, I shouldn't be forgetting this sort of thing. I couldn't be, shouldn't be, "moving on."

What does it mean when you start to forget? Are we really moving on, or is it just the heart's way of protecting us, softening the transitions of grief? I have often said that I will never get over the loss of my son, but I will one day learn how to cope. I try to be a little kinder with myself when I feel my grief shifting. After all, I forgot the name of a book, I didn't forget his name.

I want to remember....

Sleep did not come for me on the night Sam passed until very early in the morning. When it did, it was a deep, deep sleep. I remember that in that sleep, he came to me, wrapped his arms around my neck, said "I love you," and then asked me to make him oatmeal. It was the first time I ever heard the sound of his voice.

I want to always remember the way his hand felt in mine, and his sloppy kisses. The smell of his hair after a day of play, and then again as he emerged from the bath all shiny clean. I want to always remember the sound of his excitement when I would tell him we were going to Legoland, and his uncontrollable laughter that often erupted spontaneously over the smallest of things. I want to always remember how his eyes would light up when Daddy took him for a ride in the "big truck." And that mischievous grin, the one that meant he was about to do something that was either going to crack me up, or piss me off. I want to always remember every minute of his Make A Wish trip, because every minute made him happy. I want to always remember what it felt like to hold him on my lap as I read him a story. I even want to remember those long nights in the hospital, lying next to him in the dark and making stories up. Both to pass the time and take away the fear, usually mine. I want to always remember the happiness he brought to loved ones and strangers alike.

I could write volumes on the things I will always remember, as well as the things that 
I would like to remember. I try not to dwell on fading memories, I can not control what my mind filters. One thing I know for sure, is that my heart will never forget the joy he brought in to my life. The lessons he taught me about unconditional love and acceptance, are forever etched inside my heart.

My wish...

Today we were asked to write a wish or blessing for the other people taking this course. I wish this for anyone walking in the shoes of grief......

I wish you STRENGTH to not let dates on a calendar hold power over you. I wish you PEACE in your hearts. Most of all, may you always have HOPE. There is always HOPE. xox

https://www.youtube.com/watch?v=2d9OL2MwAAg&feature=youtu.be

What is the condition of my heart?

Jewel said it best in her song "Shape Of You" when writing about the loss of her friend to cancer. "There's a hole in my heart, and I carry it wherever I go.......There's a hole in my heart, in the shape of you."

That is exactly how it feels for me. There is this hideous gaping hole that lives inside of me. It is a different grief from any I have ever felt before. Sam was my child. I use to tell him that I loved him with "all my heart", now there is a little less of me. 

I hate that this hole has taken away my ability to love anything completely. That it has cast a cloud, leaving me to feel as grey as the cloud itself. That at times, it literally takes my breath away. It causes me anxiety and deep sadness. There's a hole in my heart, and I don't know how to fix it.

What would it take?

 As I read day twelve's prompt and the beautiful words of Mirabai Starr..."disarm your wounded heart and breathe quietly inside the wreckage", I took a deep and purposeful breath. Much like the one I took when I sought refuge in the bathroom at BevMo earlier today, and wished that I was home.

What would it take to soften into the pain of grief? To breathe in this wreckage that is grief? Just let me be in the cocoon that is my home. This is ground zero, the place where the wreckage occurred. The place where I don't have to put on a happy face. Say "please" and "thank you" to strangers or anyone else. The place where I don't have to hear anyone talk about their kids going back to school. The place where I let each day bring whatever it may and just let it wash over me. Where I can lie on my son's bed and wallow in sadness, or dig in the garden and feel the warm soil on my hands. Here, I am fine with feeling grief's pain. I am safe and comforted by what's familiar. Here, I don't have to pretend.

Looking back over fifteen days

I am fifteen days in, halfway through my commitment to write about grief...MY grief. I knew it wasn't going to be easy, but I didn't expect that some days I would find myself completely wrecked. Who knew that one body could contain all these tears? Sam would get a kick out of all this "leaking".

I am grateful to those in the group who have found it in themselves to read and comment on my posts, offering support to me, in spite of their own pain and suffering. I am not surprised to be experiencing some of the same emotions that has kept me away from face to face groups. I am careful not to overindulge in reading, and take on the pain of others. Mine is plenty.

I am equally as grateful to my select and trusted group of friends who are following my blog, and taking this journey with me. After slacking off for a few days, I cracked up at those who emailed to make sure I was OK. Apparently, I am their latest "summer read". I don't know where this is going, but I'm glad you're going with me.

Your world is entirely new, now.

My Dear Little Bear,

If you were here, Daddy and I would put you in the golf cart with Maggie between us, and drive you around to see what has changed since you've been gone. We would show you the garden that E-Beth so lovingly helped to plant, it has nearly grown into a jungle. I am forever being frightened by the countless lizards that spring out at me, and delighted by the bunnies and butterflies. I am convinced that it is you wearing your orange shirt darting amongst the flowers, reminding me that you are never far away.

Your playground looks pretty much the same, except on your birthday we hung a wind chime in the tree above it. The one with your name on it, that someone anonymously sent after you passed. I still hate wind chimes, and I still think it's creepy that a person would do that, but I had a weak moment and you loved music so much, I thought it would make you happy. I hope you like that I give your favorite swing a push when I pass by.

It would be quiet driving around without hearing Bandit's bark, bark, barking. I know you were there to greet him when he crossed the Rainbow Bridge. Sometimes I find Maggie and Lucy in your room, they miss you too. As we drive past the fence, our horses Tazzy and Chance come running to greet us, I would remind you to watch your fingers as you feed them carrots. We would show you the new chickies, they should be laying eggs soon. We had a few more, but there was an unfortunate event that didn't end well.

Making the loop, we would drive past Grandma's little house. She still keeps your books and a few toys in a basket in her living room. Up the hill we would go to our house and you'd see the new outdoor dining room. Mommy and Daddy started building it on Mother's Day, and finished it on Father's Day. It's a really special place, the rain on the tin roof is like music.

Our tour would end inside where little has changed. Your books and toys, just like at Grandma's, are in their rightful place. One thing is noticeably different. On a table behind the sofa, sits Kermie, your ashes sewn lovingly inside him. In a box there are sweet mementos of people and places that were special to you. Reminders of your absence. I sometimes open the box and take out your set of keys, the ones with the Sheriff Woody keychain we bought at Legoland. Daddy and I miss taking you to Legoland. They built a new water park there. It is a place we would absolutely take you.

With Love To The Moon And Back,
Mommy

...loss has torn up your roots.

Our family tree has been shaken, uprooted. I feel as though I am stuck between winter and spring, branches trying to bud, then suddenly they are hit by a late frost. I have glimpses of spring but I never seem to bloom.

Sam was my spring, a breath of fresh air and always in full bloom...always. Even when he was sick, he had a smile, and the energy to convince me to read one more book or do one more puzzle. Why can't I summon that kind of energy, channel his spirit? Instead, I am apathetic and tired.

Loss has torn up my roots and changed our family's dynamic. I am no longer grounded, I don't know my place or function. The three of us were so good together...complete. Now I am haunted by the feeling that there is always something missing. SOMEONE is always missing.

It is winter now, but I hold on to the HOPE that spring will come.

"Evening falling-a soft lamenting"

Evening's Rituals

You can feel the quiet

as it seeps from our home.

Gone are evening's rituals

splashing bath water

joyful squeals.

My hands that once held

Goodnight Moon

now fumble to find their purpose.

I have become 

accustomed to the silence

that is broken 

only by the welcome sound 

of Barn Owl's screech. 

write from a color - any color

Green. Not just any green, Kermit The Frog green. His favorite puppet green. The one I saw in the window of the hospital gift shop. That limey, chartreuse like green that is seen in nature, and a box of crayons. That green frog whose eyes are torn from the time our puppy got ahold of him. The one with the jester like collar and body that have become nappy with age, and whose lips are stained from Sam's need to share his oatmeal. That beautiful green playmate who sits in a place of honor, and will forever hold a most treasured secret. 
It's not easy being green.

We each need a guiding star, an example to live into.

When Sam was an infant, my husband and I were introduced by our son's geneticist to a family whose daughter also had a rare genetic disorder. Their daughter was a bit older than Sam, so her mom had navigated the world of special needs for a few years before we met. I appreciated her tips and tricks for anything from how to make the most out of a hospital stay, to getting what your child needs in school. But mostly, I admired her for the grace in which she did it all.

Time passed and we lost touch. One day on a class trip, I ran in to her and was deeply saddened to learn that her sweet girl had passed. My heart broke for her. I didn't know how to comfort her, how to be for her what she had been for me all those years ago. We would see one another once or twice after that, and then life just seemed to get in the way. 

Following the diagnosis of Sam's heart condition, we did the best we could to maintain our normal. When things became worse and he went into heart failure, I knew it was time for reinforcements. We sought out a hospice that would come to our home. They provided wonderful support, but I have always said that until you've walked in my shoes, you can't possibly know what I am feeling. I woke up one Sunday morning, looked at my husband, and said "I know who can get me through this." 

Since we last spoke, cell phones had replaced land lines and they had moved a time or two. My persistence paid off when I was finally able to find my friend and I sent her a message through Facebook. Funny, that is the same site I had refused for years to join because it was I who did not want to be found! She responded immediately, and I felt as though time had stood still, waiting for the two of us to pick up where we had left off. "I came across a picture of Sam last week, and thought of you" she said...and then she listened.

In the two months that we had before Sam passed, she would listen a lot, and when she felt the time was right she spoke. She spoke of the pain and sadness, and of how giving herself time was the greatest gift. She was one of my first responders that spring morning following his death. She brought music, hugs and a knowing smile. 

A few weeks later, after having spent the weekend with another one of her friends who had also lost a child, she sent me the following message; "We talked a lot about the strengths and gifts of our kids, and the profound change they made in our lives. Coping with the loss of our kids is just really hard, but know you are supported by those who love you and even those you have not met."

I still so admire the grace in which she has handled the loss of her daughter, and I will forever be grateful to our children for bringing us together.

"Found Poetry" taken from Roper's Sports News

Have you changed?
Is this just bad karma?

What is different?
Something is bothering him.
Sharp teeth can cause lots of pain.

Think of different things to do,
ride outside, take a lesson.

You can figure this out,
you need to have balance.

Lots of luck.
See you at the pay window.

"Before you know what kindness really is you must lose things" "Kindness" by Naomi Shihab Nye

Sam was born with both physical and cognitive impairments, I know kindness when I see it.

When he was alive.....
Kindness was the child who when unprompted by a parent would want to play with him.

It was the parents who led by example, teaching their children to love everybody.

It was the "normal" kids at school who chose to spend their lunch with him.

The volunteers at Miracle League, and his therapeutic riding center who donated unselfishly so he could play ball and ride.

It was the family and friends who made it possible for my husband and I to have time to ourselves.

It was the medical professionals and teachers who helped us over many, many hurdles.

After he passed....
It is my husband, whose patience seems to have no limits.

It is my closest of friends who know just when to swoop in, or stay away.

It is the stranger in the card aisle at Walgreen's who sees me crying, and gives me a knowing smile.

It is a gentle breeze. The soft nuzzle of a horse. A cocktail at the end of the day. A warm bath. A random text. A deep breath. A soft kiss on my forehead.

If grief were a fictional character...Tell me who you are?

It was about a month after Sam passed when I heard a gentle knock on the door. I didn't recognize the face, but in an odd way I was familiar with this stranger. I invited him in and said "I've been expecting you." I asked him why he took so long to come and he replied, "I've been here for a while. Your grief began long before your boy went away, but you haven't needed me until now." Really, "needed you", what did that mean?

Days turned into weeks and he no longer felt like a stranger, in fact, as he settled in I grew quite comfortable having him around. I found myself sometimes hiding behind him to avoid having to deal with well meaning, yet intrusive outsiders. Most days we got along, but there would be times when he really pissed me off. He made me tired and angry, I became impatient with those I love. Other times my new friend brought me comfort, giving me permission to spend quiet days alone. But I never felt completely alone.

One day after I realized he had unpacked and was planning to stay a while, I found the courage to ask him something I had been wondering about since the first day we met. "What did you mean by my grief starting before Sam passed?" He looked at me and said, "You have been mourning for your son since the day he was born. First you mourned the loss of your healthy child, the one you prayed for every night of your pregnancy. Then, when he went into heart failure and you knew you would lose him, you mourned once again.....for the boy you had nurtured, and cared for, and loved for all those years." "Where were you then?" I asked. "Why were you not with me then, giving me permission to grieve?" "You would not have let me in" he said.

It's 9am on a Tuesday morning.....

Before neatly folding the yellow t-shirt I keep under my pillow, I take the sleeves and wrap them around me as if to feel his hug just one more time. It is the same yellow shirt he was wearing on that March day when his heart no longer had the strength to beat.....and so it stopped. I kept it thinking that the scent of him would remain forever. It has not, and still I continue to bury my face in his yellow shirt, hoping to be reminded of the smell of my sweet boy.

Finding ways to live in the changed world...

I am painfully aware of where I live, and of who is not here with me. His laughter no longer fills our home, there are no puzzle pieces left to step on in my bare feet, no morning oatmeal for me to make. My world has changed, but the world around me has not.

In the effort to find my way, I am most comfortable in the cocoon that is our home. It's safe here, and really quite beautiful. Each morning I wake knowing that there are animals depending on me, so I must get out of bed and tend to their needs. I have a lovely garden where there is always something in bloom, and I am hopeful that I will see the butterfly fluttering through wearing it's orange shirt. I find peace in the sound of the water coming from the hose as it hits the ground, and my coffee always tastes better there. 

I am better now at doing simple things that don't require much thought. I am leaving fewer unfinished projects around the house because the sight of them made me feel like a failure, instead of an artist. Because I have become more comfortable among strangers than with people I know, I sign up for things like this class, and yoga. Still, I long for the joy in the things I used to find joy in. I long to find passion in something...anything. I long to find a place in my world that has changed. I was once the leader and now it's suits me to follow. Who is this person that has allowed grief to change her?

Something about my grief you may not know.....

I miss his name in conversation. His name was SAM, it's okay to say it. PLEASE say it.

I don't need you to have the answers. I sometimes just need you to listen.

Lunch will not make me feel better, lunch has made me gain ten pounds.

If we didn't go to lunch before Sam passed, I don't want to go with you now. 

I don't want to go to your kid's birthday party, or baby shower, or anything else that celebrates what I can not. Please understand.

Do not recommend a movie that involves a kid who came back from the dead, because you think I need to know there's a heaven. REALLY.

Just because I prefer to be home, in my garden with my animals does not mean I am going to put a gun to my head, or need counseling. I happen to like my animals better than most people.

Be prepared that if you ask me how I am, I will tell you. And depending on the day, it may not be pretty. 

Insensitive comments such as, "So, you guys are doing OK?" Will get you the answer you deserve.

Do not compare my grief to yours, or that of anyone else. Everyone's grief journey is unique. Not right or wrong, but unique to them.

I appreciate a random text or card in the mailbox more than ever. It reminds me that I'm not alone.

Remembering significant dates lets me know that Sam mattered to you.

I realize that to some, Sam's passing was little more than a blip on their radar. For me, it was a life shattering, ever present event from which I think I will never recover. It is my hope that one day I will learn to cope with this hole that will remain forever in my heart.

I don't have a name, I don't know what to do......

"Sam's Mom", "Ma", "Mama", "Mommy"......Since 1993 when at thirty-two weeks gestation, our only child came into this world, that is who I've been. I have to admit it took some getting used to, feeling like the former me no longer existed. I was cast into a new role, a new normal. A life that included words such as Partial Trisomy 5q, and craniosynostosis, when I was far more comfortable with the likes of ranunculus, delphinium and Dom Perignon. 

It grew on me, my new title, and I wore it like a badge of honor. Although Sam was not able to speak,  and his sign language was limited, on occasion, with great effort to my delight he would exclaim "MA!" 

Knowing that his language skills would be limited was one of the many bitter pills I would have to swallow, but I never stopped trying, hoping to hear his voice....to hear him say my name. I remember vividly while in the presence of my husband's mother, I was repeating "Mama, Mama" over and over trying to get Sam to say it back. She looked up at me and said, "You know baby's first word is usually Dada." I replied that I really didn't care if Sam's first words were "fuck off", it would be the happiest day of my life. He never did say those words, or any others.

I had nearly twenty years of being known as "Mommy", and with one final breath it ended. Everything I had become.... full time caregiver, advocate, nurse and Mommy, the title of which I was most proud, ALL GONE. I long to hear my husband say "Go ask Mommy", or pretend to be "Mean Mommy" just to hear him laugh. 

I know that I will always be a mother, Sam's mother, but for now I can't remember to move clothes from one machine to the other, let alone know who I am......or what I want to do.

Deborah

Here It Goes.....

I have signed up for an online class called "Writing Through Grief". Over the next thirty days I will be given a daily prompt from which I am to write whatever comes to me. I will type the prompt at the top of my post so readers will have a general idea as to what it is I am babbling on about.

Please  remember that I am not a "writer". I am a person who writes and I can not guarantee that it will be grammitically correct or that my punctuation is in the right places. I can guarantee that it will be honest, emotional, and sometimes colorful.

Thank you for taking this journey with me.

Deborah