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!