Friday, December 28, 2012

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.

Wednesday, December 19, 2012

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

Monday, December 17, 2012

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.

Wednesday, December 12, 2012

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.

Wednesday, November 14, 2012

One Day at a Time

On September 13, 2012 at 10:18pm I endured the worse loss ever when God decided that my darling daughter Makenna would sit upon the thrown with him. Makenna Caroline Clark departed her earthly home after a 4 year and 5 month battle with a rare syndrome called Macrocephaly Capillary Malformation and Hydrocephalus. Makenna endured a total of 26 surgeries that resulted in us gaining 3 additional years to her short life. Makenna was never expected to live to see her first birthday. She proved many surgeons wrong through her fight she showed the world what a true spirit of faith and belief can really have on you. Makenna Caroline took each day with a smile and a giggle. She had a following that showed an outpouring of love on September 18, 2012 when she was laid to rest at Sunset Hill Cemetary in Rockport, IN. Makenna had in attendance over 150 people at her home going partying and sharing stories about her life. She will be forever missed and a space within our grieving hearts will remain due to her absence here on earth. Makenna taught us all to fight each day with the notion that it could be your last. Never go a day without telling those you love how you feel. For I have learned from being Makenna's mom that true and unconditional love is something to never take for granted. Makenna has a story to tell and I will share this journey of her life and my life with her on this blog. "Where you invest your love, you invest your life"---Awake My Soul

Tuesday, June 12, 2012

Are feminism and attachment parenting practices compatible?

Are feminism and attachment parenting practices compatible?

I am a feminist mother & believe firmly in the positive result of attachment parenting with my daughter. I feel I am her best advocate an model of love, support and a full nurturing base. I think when non feminist think of feminist mothers we are viewed as women who want to have it all which does exclude having a secure attachment to our children and families. In all actuality it is quite the opportunity as expressed in the article. Feminist mothers are more apt to practice attachment parenting over non feminist mothers.

Wednesday, April 11, 2012

The Journey Continues...2012

Makenna has been out of the hospital for almost 2 years this May 2012. She was recently admitted to Dayton Children's Hospital on April 9, 2012 due to some changes in her behavior. After her admission she was sent to CT Scan. The scan revealed 4th ventricle enlargement. Prior to this admission Makenna had place an ETV drain ( small tube inserted into the floor of the 3rd ventricle in her brain. This ETV became blocked and enlarged the ventricles, thus increasing the size of her head circumferance. Makenna's neurosurgeon Dr. Laurence Kleiner felt surgery was needed to investigate the cause of the trouble. Once inside the brain he learned that scar tissue was the culprit and that it formed entirely around the original openning to the drain. The ETV was removed and replaced with a new one in a new location. Makenna is now in the PICU and using an EVS ( a monintor that determines the flow of CSF ( cerbral spinal fluid) that is drained from her brain. She will be on this monitor for 3 days for observation. The hope is that she is able to become stable with the ETV and this placement will work for her. If not a VP shunt will be placced in the right posterior of her brain and routed around to drain the fluid to safely prevent skin break down and infection. However it was explained to me that because Makenna has had so many shunt revisions and externalization the sirk for infection is increased by 70% with each new placement and or revision of a shunt/device.
So now we just prepare to keeo Makenna in good spirits while she stabilizes her pressure in hopes the ETV drain will be the best option for her.
I continue to pray and be thankful for each day I am allowed to see her smile and hug and kiss that cute face. If you haven't hugged a Makenna today, you truly are missing out!