Denim Dash 2015

Today is March 21st, 1 day before Makenna's 7th birthday. Today I will run 7 miles in her honor and the remembrance of the angels of M-CM who are with her now. It doesn't matter if my daughter is here in earth or in heaven I will always think of her everyday and every single moment of life.
"I'll love you forever,
I'll like your always.
As long as I'm living,
My baby you'll be."
Mommy can't wait to celebrate you tomorrow kiddo!!
Love forevermore,
Your mommy

The lies we tell ourselves

It's that time of year again where the pain of child loss rears it's ugly head. In all its splendor it creeps into your heart once again, into the spaces that have been left empty by your loss. We begin the cycle of emotions again each holiday season. Seeing all the children smiling, happy and the glimmer of happiness of Christmas beckoning in their hearts. This is something as parents of child loss do not have. We put on the cheerful smile that hides the sorrow that undertakes us each passing holiday without our child. The grief we hide is just that--hidden. We will tell everyone we are "okay", we put on the smile to attend events with our families those with children around our child's age. We fake it until we make it. We get into th e car, rush home and hide for a few days after a family gathering. We hide away until the pain is tucked away, buried into our hiding place of child loss. We keep it there until something like a song, or movie comes on again and realize we are in the throws of this time of emotional ups and downs, finding our new hiding space until the season is over. But ask us how we se doing? We will tell you we are okay, we are fine.  We love being around our families at the holidays, even if a chair will always be empty at our tables, and a space within our heart will always remain without our child.

A lifetime

"When you look back on a lifetime and think of what has been given to the world by your presence,  your fugitive presence, inevitably you think of your art, whatever it may be, as the gift you have made it to the  world in acknowledgement of rhe gift you have been given, which is the life itself. ..The work is not an expression of the desire for praise or recognition,  or prizes, but the deepest manifestation of your gratitude for the gift of life." --Stanley Kunitz

Hydrocephalus Awareness 2014

Today marks the first day of Hydrocephalus awareness month.  September 13th marks the 2 year angelversary of my Makenna going to heaven.
With each passing day I remember her smile, her giggle but most of all I remember her bravery. If I can be half as brave as she was each day fighting a condition with no cure imagine how things would be.
This angel of mine was brave day in and day out. She hardly ever cried out in pain when on most days I'm sure she wanted to scream.  Yet she didn't. She knew her mission was to be a warrior in a cute compact frame full of smiles and tenacity. 
As we move through this month I know how blessed I am to be her mother for th e rest of my life. Although I must walk this part of the journey without her, I know I will be reunited with her one day. On that day it will be a glorious day full of giggles and smiles all for me. I'll reach down and scoop her up into my arms and say, "mommy missed you so much my little monkey", and I am sure she will give me a very joyous response,  "mommy why did you miss me?; you've been by my side everyday. "

All the boxes

After and during each move I see the same boxes. The ones with my daughters name written on the labels, "Makenna's toys, Makenna's room, Makenna's books". Each time in the last year and half of packing and unpacking the boxes never get opened.  The go into a storage closest. The boxes will never get unpacked into her room, with her bed, or her toys. Instead the small items I did keep as a memory are all nestled away in boxes with her name on them. I put up her pictures in my home, it's usually the first thing I do to make it seem like home. I keep her memory book at my bedside table to read at night. I keep her favorite bedtime story on my book shelf to read on those hard nights when sleep eludes my wandering mind. There are about 8 boxes full of her memories.  Each box holds a trinket of the 4 and half years of her life. Some people tell me each time I should try and get rid of these boxes...ya know move on already.  And at times I wonder if it is not the actual boxes I'd be escaping but her memory.  It's easy for parents that have children to not see the values in those items that are packed so neatly away. However for someone who has a child in heaven all we have are those boxes. We don't have a smiling child to snuggle each night, we don't have anymore art work from school to hang on the refrigerator anymore....what we have are 8 boxes of memories.  Imagine having to place your life in 8 boxes...and be fine with knowing that is all you get. 8 boxes of memories.

On most days...

On most days on your journey with grief you care about what you feel,  look like or if you can manage the smile for ano th er second. Then on other days the caring ceases and your outlook on the future becomes bleak again and you cycle back into the fold of pain of your loss of your child. Your space that was once full of laughter and joy is now void of such. Your values your hopes of that future are gone. And you wonder what future is there after this tremendous loss of your heart. It's the wondering that gets you on most days of the journey. It's the smile you must fake knowing that the world around us is moving along and our world without our child is at a stand still.  You face each day knowing that no matter what your new normal is not normal. You sit on most days looking for signs that your child is still with you. You hope for something to show you they are better and at peace, knowing that all you really long for is them to walk through the door even if for a second. You wish for life to start to make sense again now that you've been forced to live each day without a piece of yourself.  On most days you fight to get out of bed, or to go to work or keep focused at work. On most days you wish people around you remembered your child the way you do. On most days you just wish this was all a bad dream you could awake from. On most days you wish life gave you more time. On most days you try to understand this long lasting loss. On most days you pray for your heart will stop aching. On most days you hope for solace in the gravity of your pain and loss. On most days you hurt and want to stop fighting. On most days you just weep...

Holidays

Each year and each season comes a holiday without a part of my heart. Each year family and friends look at strangely scratching their heads wondering why you can't just "move on" with your. I think well medically speaking could you function with part of your heart missing from your body? The answer would be a resounding "no". The same holds the for the loss of a child. No parent should ever be faced with the burden of burying their child-however each day it happens. Parents are called into the doctors office, police station or school to tell them the worse possible news-"your child ma'am is dead, or has weeks, days or hours to live." So when we get those looks from people in our close but few circle ( ya know the few friends an family members that have managed to stay with you on the grief journey) they look to hope maybe today will be the day she gets over this loss. Maybe today she will be back to her old self. Again my old self died the moment my daughter died. My old self too departed this earthly body to never be seen again. The person you see today is purely irrelevant in the grand scheme of it all. The person you see today is missing a part of her heart. 

So when the holidays come and we sit a place at the table for our child, or we get out the toys they got from their last birthday---do us all a favor if you can't learn to help simply walk away. One will never know the horrid pain of a loss such as this loss if a child. The pain is a reminder each day and even more on holidays that our child is not with us anymore. Each day is a reminder that being alive without your child is the cross you must bear and at times----alone.

So for this Easter Sunday I say this,

My dearest daughter Makenna Caroline I thank you for continuing to bring me the sunshine on my darkest days. I thank you for being my daughter my one true great accomplishment on this earth. Until I see you again,

Forever and always,

Your mommy

Unless someone like you cares a whole awful lot...

SO yesterday was Dr. Seuss' birthday. It reminded me of all the days I got to read stories to my daughter. She loved begin read to. Many of the stories she knew by heart. Like "Green Eggs and Ham" or "If you give a mouse a cookie" or our all time favorite, "Goodnight Moon". IT was the simple things that she enjoyed doing. There were times when I did not have money to buy her the newest toys, of which many she would not play with but it was the time spent reading with her and to her that meant the most to us. Makenna you see may not of understood the printed words in the books we read, but she did understand my tone. She was able to hear my voice and know it was me, her mom. The person that protected her from harm, the person in this world that truly loved her more than anyone in the entire world. This is not say that her other family members did not love her--yet to say I had a different type of love for my daughter. When I think about the word "love" I see her face smiling back at me from the heavens. I can almost feel her little chubby hand touch the side of my face and look into the big glorious brown eyes, that made the rest of the world fade into the dark. Those are the moments that I miss the most. The reading stories to her, or going for a walk to the park in the stroller or making that last minute run to Wal-Nart for the much needed new and improved zippy cup or the even larger bag of diapers that were on sale. Those are the moments that I miss. I miss the giggles she gave when she was excited about making the trip to Wal-Mart or how she would giggle when it was time to walk to the bus stop and await the arrival of her friends. She truly enjoyed life to the fullest. I wish I could one day do the same. I wish to one day have that small little gift of laughter back in my life. The small little wonder we call know by name. That is my wish for the day.

Almost a year

Almost a year and the pain is the same unimaginable ache that I felt at 10:17pm September 13, 2012 when God called you His angel. My heart remains frozen in the minutes prior to your passing that I doubt will ever regain its true function of beating. I brave each day as of at someway I will see you sooner if I just back away from the edge of falling again.  Yet I stop and remember each moment of you- your smile your giggle those big brown eyes looking at me each morning for protection. If only I could have protected you from this horrid diseas hydrocephalus. I never thought I could love someone a much as I did you when you were born. My dear child my greatest achievement. You have inspired many people around to continue through tough days and days many wished they could give up to the stars. You give me hope that one day i can brave this terrible world without you in it. One day I will be strong enough to go to battle like you did each day and fight. I hope one day I will have your strength. 

Moving forward and Standing Still

Our immobility in our refi fined lives spill over into inability to plan ahead, particularly for the long term. For years, we did not want to think of the future. We have found newly defined lives that still have an empty place at the dinner table. We manage to muster up the courage to plan a week or month ahead in our lives. However the plan is changed forevermore. The loss is still a loss and our hearts are still aching. The loss of our child renders us immobile most days especially in the beginning. You are on a tiny ship thrown into the crashing waters and tides of grief--the ebb and flow of the days takes you under---your life raft buried beneath your weak legs. You hope that each day you can mo w forward all the while standing still. One day...

New Kind of Normal

When despair tries to take me under -- I choose life -- The battle of the mind and heart : When I wonder what God could possibly be thinking -- I choose trust -- A prolonged journey : When I desperately want relief from unrelenting reality -- I choose perseverance -- holding on to hope : When I feel oppressed by my disappointment and sorrow -- I choose gratitude -- My heartache is none of your business! : When I want to keep my feelings to myself -- I choose vulnerability -- Loss upon loss : When nothing goes according to my plan -- I choose relinquishment -- Who's to blame? : When I want to point the finger -- I choose forgiveness -- Pity parties, dreams gone amuck, and new beginnings : When I want to give up -- I choose purposeful action. From the book a new kind or normal

Another day without my heart

Most days I can get out of bed put my feet firmly on the floor and stand up. Then there are some days when my feet hit the floor with a Thud because my heart has gone for a tumble. Today I awoke from yet another restless night of no sleep. You see what I am living through, going through is the motions that follow child loss. In the eye of he storm after the day of the funeral it's what everyone expects you to do, to feel, to want to be alone. Then the months go by and everyone around you wants you to return to your old self---the person you were before your child died in your arms only months ago. It has been 8 months since Makenna died in my arms. I was there alone as per my usual. It was just us mother and daughter. Going through the worse possible movement you can imagine sharing with the child you vowed to protect and give your life for----and that moment you realize you have failed. Because in that moment when she took her last breath of life---so did I. My being died on September 13, 2012. Never to return again the smile she gave me the laughter and the tears. It was over-my life as I had planned it was now gone. I hear everyone say to me you will be happy again. You will have a family again. What's funny about that was Makenna was my family. No matter what we always had each other. Now I am alone. My house is filled with things in her room that only provide comfort. The rest of the days are just empty. My soul aches and most days it's easier to put on the smile because no one rarely ask how you are doing anymore. Who wants to start a dialogue with a grieving mother. You have nothing in common. People move on---and I am here standing still. Awaiting for the next fatality in this horrid life I have to stand in alone. I can fake it until I make it. Pretend smile and say to the world I've got this like I did when I was a single mom to a child with special needs. There's no old me to recover. It's a new me and most of you won't like what you see. The spirit the laughter is forced daily. I do my best to always make everyone else ok---and once again there's not a soul around for me.

Universal Calendar of loss

You awake each day wondering if the shock and numbness of it all will ever go away. You make plans that seem meaningless because now your plans do not include your child. People often tell me that I'm doing great, and they are proud of me for starting my "new" life as if my old life with my daughter was something that wasn't. What "new" life I sit and think to myself? This is not surely a "new" life this is a life in which I am wandering the planet aimless and tired due to no sleep because of the nightmares. This isn't a "new" life---this is what I simply call Hell.
When people refer to grief they often say oh in time things will get better. Or my favorite you will find something to with your life. I did I got a job, I went back to work so my days were not filled with he constant hopeless feeling. The constant dread that not ever will my life be the same. Not ever will I be able to wake up each morning go into Makenna's room and cuddle and kiss her face. Not ever will I get to help her pick out a new dress for a party or blow out candles on a birthday cake---this is not me starting a "new" life. This is me barely living in the old shell of my life I want back.
Don't get me wrong my faith is shattered daily. I often am angry and I cry. I pray that I can have faith knowing she is in heaven and free from pain---however it doesn't ease the monumentous ache I feel in my should that the best part of me is forever empty. That my best feat in life is gone. I long for the cries, the constant hospital stays, the giggles I want all of it back I want my old life back. Because this new life that everyone speaks of is an empty hollow shell of an existence. There's no giggle, no laughter or warm little hand to kiss goodnight.
My new life is a farce. It's just me coping and wondering how I will make it through this year. You wonder where you fun the charge of energy to be happy again, yiu realize that child loss changes your core if who you once used to be. You make steps forward only to find you've been going in circles the entire time. You pray each day for strength to help you get out of bed and go to work and put on a smile. Your force yourself to be normal not dare mention your grief or your sadness. You pray no one ask you "do you have kids?"---because what you say brings you back to the grave. You answer yes I do she is wonderful and pray they ask nothing else of you. You keep to yourself as to not draw attention to the fact that you are part of a new club---child loss and only those in the club understand this viscous cycle of revolving grief---this chronic everlasting hurt and loss. So there's no magic calendar to tell is your time to stop grieving is done. You turn the page on he calendar and wonder will today be today when the wheels fall off yet again. Will my sorrow undoubtedly get the best of me? Will my life ever be the same?

Who am I anyway?

"Who am I?" is the question everyone asks who has been touched by the loss of a child. We don't even know who we are anymore because we're so changed. We say and do things we never thought possible. We get angry and have mood swings. We think thoughts that would scare others if they heard our thoughts. We wear a mask to hide behind because the new "me" is frightening. We're a shell of the person we used to be -- we've changed, but the changes are often scary. We're don't trust life anymore. How can we? The unimagineable happened. Our child died. And, when that happened we stopped being ourselves. That old "me" is gone and now we are a new person -- different in so many ways. And, it's so scary. It feels like we're teetering on the brink of insanity. Yes, that's just how scary the grief from child loss is!

If only for a night...

I know this is what heaven looks like. Finding peace in nature is healthy for the grieving soul. Encountering nature assist in relaxing your nerves and calming your worries. If only for a night you find solace in knowing life remains in your aching heart. Remembering the joy amongst your pain---if only for a night.

Beautiful Girl

Angel wings I have gained, through heavens door I walked. I met family I've never seen their embraces warm and new. They told mommy I would be alright, you left with her the ability to fight. I wonder who will take care of her when she is sad. Her heart is empty with the without me there. Although at peace I am now and she wonders what to do now. I hope she knows how much I loved her she gave me the best life and helped me through it. Although I was here for a short while my mommys love is everlasting. She told me that night it was ok to go. She knew I'd be taken care of in Jesus' care-I could now fly high above in the air. I am now at peace my dear mommy. Your love I will never be without.

Today

"Today I am fragile. Today I feel as though I could break into a million fragments. Today I embrace the weakness in me. Today I acknowledge the hurt. Today I feel the pain. Today I release the tears and cry. Tomorrow I will be unbreakable. Tomorrow I will keep it all together. Tomorrow I will smile. Tomorrow I will be healed. Tomorrow I will be stronger All because I survived today." Karen Heckel

"Heavens Special Children"

"Heavens Special Children Poem": A meeting was held quite far from earth, “It’s time again for another birth.” Said the angels to the Lord above, “This special child will need much love.” “Their progress may be very slow, Accomplishments they may not show. And they’ll require extra care From the folks they meet down there.” “They may not run or laugh or play, Their thoughts may seem quite far away. In many ways they won’t adapt, And they’ll be known as ‘Handicapped’.” “So let’s be careful where they’re sent. We want their lives to be content. Please, Lord, find the parents who Will do a special job for you.” From a Mom

My Sorrow

It doesn't matter the time of day, I think of my daughter every waking moment. My heart begins to fill with joy of all the things we experienced as mother and daughter. Then I turn to see what she is up to rolling around on the floor---then I pause and realize she isn't here with me. The memories that I hold on to are all I have of her now. I begin to talk to people about what Makenna did or how she reacted to a certain situation and the room always draws to a silence. No one wants to hear a grieving mother talk about her child as if she were there in the flesh. They all look so confused wondering what is wrong with her. It is the same look I got during my four and half years of raising Makenna who had special needs. It is the look of "pity" this mom got a lemon. Pity this poor mother, pity this poor child. How in the world does she do this day in and day out. People often wonder about that. How I did "it". Well simply put Makenna Caroline Clark, was not an "it", she was my daughter whom I loved more than anyone on the planet. It was not something I did. SHE was my reason for being. So it is the same on the other side of this thing called grief. How will I do this thing called life? Unfortunately this time around I am unsure of how I will do it. Each day adds to my grief. Each day adds to my ache. Each day I struggle with the idea that I am now in this world alone without my daughter. Each day I see what other children are doing; playing, laughing, running, jumping. Those are what you call "triggers" those are the things that allow you to sink into a world of chronic sorrow. The triggers allow you to think about the memories- you know the one thing I have left to hold on to of my daughter. Those triggers act as a constant reminder that you are "without". You are without the child that no matter the looks of pity and nasty comments at time, you would give your own life to have back. You yearn for the smile, the laughter, the countless sleepless nights. So when I think about being the mom of a child with special needs and you hear the tried and true statement that, "God only gives special children to special parents" I think now does God only take special children away too. As I sit here this morning thinking about GOD and the plans that I have been told he has for my life or for the 20 parents who will bury their angels from Sandy Hook, I wonder why such a gesture to have a plan laid out for grieving parents. What plan could there be in store for my life that would be so grand that would make me understand "why" a child was taken so early? Or how does this loss measure up to having something better happen in your life. This I cannot understand. I have been told over the last 3 months that "God has such great things in store for my life, I have done and given so much love to Makenna God has something in store for my life" There it is---my life. PERIOD. Now "our" life that I had with my daughter. That is gone. She is gone. And I am left alone and empty trying to piece together my life without her in it. Well isn't just grand. All I knew from the start was I was to be her mother. FOREVER. Even when I was told otherwise I knew she was my child. I would do whatever it took to keep her pain free, safe and loved. I loved and loved and loved...and now I am without her. EMPTY. The sorrow embodies my daily existence. I dream of finding happiness and when I awake to go to her room, I am once again hit by the ache that fills my heart. I am without her.

Experience of Grief

Some people say that you experience grief in stages, others say that it is said to happen when something triggers the grief process. At the current moment I feel that my grief is not something that happen in a phase, a stage or on a continuum. I feel that when you grieve you give a part of yourself to the loss. The loss of a relationship, the loss of the role you had with the object, or person, or the loss of the time spent, time not spent, or time in the future. I sit here at my computer almost 3 months to the day tomorrow of having lost my daughter Makenna. She lost her battle with a rare syndrome called M-CM and Hydrocephalus. She endured 26 surgeries and countless other obstacles related to the condition. I grieve for the loss of her being on earth. I grieve and ache for the future I role of mother that I had planned. I ache for the loss of her spirit, her laughter, and her fighter attitude. It was in her strong will that I gained my will to get up in the morning. It was her will that gave me the ability to function in a world filled with doubt, unanswered prayers. I miss her smile and her laughter at my silly behavior. What I miss most is her love that she gave me in no words she spoke. She never was able to talk, or walk or sit up on her own. The things we took for granted she never shrugged at the possibility she was unable to do them. What she GAVE me was the foundation of love, the walls to my house are covered with her photos, the albums are full, yet my heart is empty. She remains in my thoughts daily. I sit and cry while looking at her picture. I hold her bear "George" and cry because it was the last toy she held. I grieve for my daughter because she in a world of struggle she was my ROCK. She gave me hope when I had none, she allowed me to me to just be her mom, no faults she saw in my character. I think she knew one day it would be time for her to let the battle go as a loss. Score one for heaven, zero for mommy. I know that on September 13, 2012 at 10:18pm when she took her last breathe she was free from pain and my process, my stage, my relentless grieving began. Only 3 months into this process of loosing a child....I grieve. Asking myself how will I ever move on from this place...without Makenna I ache.