Tuesday, November 24, 2009
Over this last weekend I was cooking dinner as the boys watched Disney Channel. My mind was not completely on the cooking nor was it completely on the TV. As I was stirring the pot in front of me on the stove I realized I was humming the Miley Cyrus song coming from the TV. Let’s see how did it go? “Life’s what you make it so let’s make it right”. Hum… let’s ponder this for a bit…
Life is what you make it? Ok I can live with that but what happens when the tools you need are ripped right out of your hands? What happened when life takes your health? Life has sent me many obstacles, such as diabetes, stroke, bell’s palsy, cancer, lymphedema, R.A. auto immune disease, and list goes on. No, I am not listing these complications because I want sympathy; nope I am doing so because we have lost our health insurance. Yep, that’s right you heard me correctly, I have no health insurance and all these pre-existing conditions!
So what do I do? What do my children do? We have applied for Medicaid and chips. That was almost four months ago and when they finally decided to call (last week) I wasn’t home to take the call. Reschedule you say? I would love to BUT they don’t answer their phones nor does our local office have their voice mail set up. It’s such a great opportunity to see our tax dollars at work.
In between all the turmoil, the ups and downs of unemployment Johnny has done his best to find work. In fact he is working, and it’s not a bad job but in a failing economy being in sales with a 100% commissioned based job is not exactly paying the bills. We never see him anymore, the boys are a mess and now without medical insurance my body is falling apart.
I know some you will say really? I don’t see it. You are always going, always busy. The truth is I do my best to keep my pain at bay; to work and to live through it but it’s always there just below the surface. I wake in the morning and cannot move my hands. I go to sleep at night dragging my legs into bed. In all honesty I have learned in this crazy, topsy turvy life of mine to pull myself up, and let my feet hit the ground running. But even with that said, pain or no pain, there comes a time when a person’s body just gives out from under them. I think I am close to that point. No, I am not whining. I am just tired, weary I believe and yes so hurt we have no insurance.
Without insurance I am a sitting duck. First I have not had my port flushed in close to six weeks. I have no doctors, no scans, no tumor markers, no blood work, no weekly IVIG, and no medications. And it’s not just my life in jeopardy; it’s my children’s as well. What about their medical issues and their medications? Seriously medications are so high paying for them can give you a heart attack on the spot! We are all off most of our medications right now and I can say for one my body is feeling it.
So let’s regroup for a moment. So tell me what I am to do? Give up? Give in to the self pity? No I can’t do that, it does nothing for anyone. But I can continue to get up, move and live this life I have been given with my faith in tack and my hope in place. I can raise my voice and say we need reform. Our monthly premiums were billed to us at $1332 a month, how crazy is that? You think you are safe, have it all taken care of and life paid up only to find all your security gone in just a flash. Seriously with a paycheck at times lower than minimum wage I ask how does one pay such outrageous fees? When it comes to deciding between the mortgage and the health insurance one has to go especially after your policy has been re-coded.
So here we sit in a place I never saw on the map before, a place of worry, concern and uncertainty. I have lived through cancer, brought my family along for the ride and never was I so scared as I am now!
Thursday, November 12, 2009
Above is a recent project/interview the boys and I took part in. In order to listen to it you will have to turn off or pause the music player at the bottom of the page. The boys and I were featured in the 2009 calendar during the month of February ( She still has a few of these too ) but you can still grab up a 2010 calendar for yourself at and support the cause @ www.alisamurray.com
I have spent the last two weeks going through family pictures, looking back through time so to speak and watching my children grow quicker than I ever believed possible.
Joshua is turning 13 this week. A milestone in his life and a” take my breath away” moment for Johnny and I! In getting ready for Joshua’s birthday and celebrating his beautiful life I began a trip down memory lane I will never forget. I have sorted through picture after picture looking for just the right ones for his memory book we have been filling with letters from loved ones, friends and teachers who have all played a part in Joshua’s life. What I saw before me took my breath away… There in front of me was Joshua’s life, beautiful, tender, precious, humorous, heartbreaking and inspiring.
I felt at times I was walking through time, watching life bloom right in front of me. I was struck by the moments caught on film and how they told a story of love and hope. In his pictures I saw life unfolding as I hit the rewind button to go back or fast forward to move ahead in this beautiful time line. Life back then was full of smiles and laughter; there were so many new things in life to experience. Ahhh, the smiles were contagious and life was good. Sure we had hardships, money was always tight but the boys rarely knew about any of our ups and downs.
Through the years life took us many places and we made many memories together. Life was full and moment by moment; memory by memory we built a family, strong with hope, laughter and faith. The boys went fishing with Johnny, we baked cookies, made gingerbread houses together and we had pillow fights. Where we a perfect family? By no means, and there are plenty who would be the first to shout it out, but we were blending, bending and being forged as a family through all our imperfections.
If I were to take you down memory lane with me you I would tell you Joshua was born within the first year of our marriage, and he came into our lives with a bang. I spent most of my pregnancy in the hospital battling pre-term labor with Joshua (I did the same with Micah) . I made it through 15 hours of hard labor and following an emergency C-section Joshua was brought into this world and our lives at 9:15 PM.
Through the years we battled health issues with Joshua due to his pre term birth, and by a year old he was wearing a DOC band to reshape his skull which was 17 centimeters off course. But through it all Joshua was a happy baby, full of life, laughter and a smile to melt your heart. He was our little miracle, a blessing no words can ever express. Then when Micah came into our lives Joshua embraced “the Baby” as he called him for the first 3 months. He was a good big brother and as the two of them grew close.
As I look at all these pictures I am struck by the happiness we were blessed with. Our life together is one I wouldn’t trade for anything. We have loved, lost, and endured the hardest of days together. I see life in full bloom looking through these albums. Joshua was always so happy, silly actually, and always the kid with the biggest heart. Not much has really changed I guess but as I look, picture after picture, I see where the smiles began to fade and the serious side of life took hold. Oh sure those precious smiles were there through the bad times, through the cancer and the chemo. In fact you can still catch a glimpse of those unsolicited smiles on any given day but I realize now a serious nature took hold of our lives, right under our noses and the innocence of their child hood was gone in a moment’s notice.
I sit here right now shaking my head with tears running down my face wondering where their childhood went. In just a few short years, years we should have had together to laugh, giggle and enjoy the boys’ innocence was taken from us. We have been so busy trying to live through the cancer, the surgeries, the chemo, the aftershock that the price of doing so was lost on me until now.
Yes we have grown stronger as a family, and we have lived, laughed and loved but we have also lost much through this battle. The biggest loss not being my breast, no, the biggest loss has been the everyday innocence of my children. They have lost the security of knowing life as it was before, safe and constant. They were old enough to understand, to try and wish it all away and then to be swallowed up by the beast. I know it is not easy to imagine how it must feel to a boy of 7 and 9, to go to bed at night and wonder if you will have a mother in the morning. Think about this for a moment… my poor babies how they must have felt! The burden placed upon not just their backs but also upon their hearts, and their spirits. They were just babies when this battle began and now they are turning into young men. Sure the burden is not as large as it was back then, but this beast has been at their feet, on their backs, and in their hearts for all this time disrupting the path they were already set upon.
Now I look at Joshua as he turns thirteen and I see what time has lost to me. I will be honest sometimes cry over what I have brought into their lives, the pain, the worry and the fear. They dealt with enough before hand, the diabetes, the stroke, and the problems that came with those issues but with the cancer it has been different. I wonder if I have let them down, if this poison has taken too much from them. I cannot ever recover those years which have passed us by, but I know Joshua and Micah have become a strong, unyielding force. I know deep inside Joshua will never surrender any part of his faith to this beast. As parents, Johnny and I have strived through it all to give the boys hope, never surrendering to the cancer which came for my life, not theirs, yet somehow reached out and dragged them down to the pits with me.
Even when life has not made much sense we have struggled to plant the seeds of hope and faith inside their tender hearts. We have taken every moment for what it is: a living memory. Some have not always understood our choices but we have always made each decision for our children’s’ benefit, to hold them tight within the moments given to us. We have traveled near and far, from New York City to Walt Disney World, embraced their childlike innocence when they have dug up critters, chased them down the beach and given in to the innocence of their boyish grins when they have played in the rain. At the end of the day we have given them the time God have given us together before anything else.
But I see now looking through picture after picture life stopped and the joy of childhood innocence was stolen. A serious nature took root no matter how hard we fought to keep them untouched, unscathed by the beast’s scales. But again looking at the pictures before me, I see those seeds we planted in their tiny lives way back when and they have not gone un-watered.
In Joshua I see a man growing before me, as I look at Joshua today. He is a handsome boy with a beautiful heart and warm soul. His inspiration rises up from deep within his spirit. He does not seek to put himself first nor does he ever make anyone feel small just to make himself feel in control of the chaos surrounding his life. I also see a very serious child and I miss his constant grin. But you know what I see most; a great love for his family and a longing to be free from the beast.
Now I can’t cut away the pain but I can reinforce the laughter and the joy we once knew in our lives before all this began. But I can grab hold of today, throw away the despair nipping at our heels and take back the smiley, silly and genuine innocence of life before breast cancer beat our door down. Will it ever be the same as before our dance with the beast began? No, not at all because we have been through the fire, we have faced death in the face laterally and we have been tested but we have come through the flames stronger and together.
The truth is we have come though the last three years a bit more on the serious side of life. So I think it’s time to clean the cob webs out, sweep the floors and throw out the clutter collecting in our lives. It’s time for us to heal as a family, not just individually. No matter how strong we were before our lives were shattered we have been broken. So now it’s time to pick up the pieces, pull out the super glue and fix what has been broken inside each of us. As we celebrate Joshua’s thirteenth birthday we need to turn a new leaf in our lives as a family.
The day cancer charged into our lives Joshua’s smiles went blue but today when I wish him a happy birthday, I will remember the boy who would stick out his tongue and hang on his daddy every chance he got. As of today we will begin to re enforce the lighter side of life. True we can’t forget where we have been but we can reach out for today, the here and the now, enjoying every minute of it! We need to continue to seize each individual moment shared together as we also embrace the laughter, the grins and the silly, quirky moments we experience along the journey together as well.
So as I bring my scattered thoughts to a close I challenge everyone to embrace your inner child. Let the laughter back into your lives and set yourself free. Fill your lives with family and don’t ever over look the joy laughter brings. A smile can’t ever be truly lost and laughter can only be suppressed for so long…so go ahead, let it out because when your child’s smile goes blue so does your heart.