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.