Middle of the night wake ups and mornings where the alarm doesn’t force me out of bed, which is most of the time, are never good. Life was hard enough B.E.D. (before Evan’s diagnosis), as I already was a fear ridden momma and worried beyond what I should have for my kid’s health and safety. We all know now that I “knew” something was coming!! Now, though, idol time allows for reflection on the horror that I have witnessed and tremendous knowledge of all the horror there is in this world. I don’t have to read the obits any more like I did B.E.D., a weird fascination I had to try to see how people were dying and HOPE that it would not happen to anyone I knew, especially me, always trying to imagine how the parents felt who lost children. And now I know.
Most days I have are good, if not great. Had a beautiful day yesterday working our first “DKMS” event at Cross Fit Regionals here at CSU Long Beach. Forever in awe of my new CF community, I aspire to be able to do what these seasoned athletes can do someday. And while we had NO idea what the day would bring, as we had no advertising, just a CF owner who worked his magic and got us a booth space, 52 quality donors later we felt great. Then back to San Clemente for a graduation party, remember we don’t get invited to too many parties in our new life, and had a great evening catching up with friends. Then the early wake up call hits me in this new life that I had no desire to be part of.
And now I realize this will be part of my “Cross” to bear for the rest of my time on this earth. The best I can do is to try to avoid these times, and when they come, either try to lock the thoughts in the closet, and when that doesn’t work, come here to share. Four years later, I still am shocked by what has transpired since that fateful day we were told that Evan had a terminal diagnosis. I can remember the events leading up to being forced into that conference room clearly, and I can remember sitting in that room and hearing the message and being so strangely composed. We had been defeated, and at that moment, there were no options and I totally embraced the fact my son had only a short time left with us and I was prepared to live every second “playing with my boy until he could not play any more.” With the dawn of the new day, came the news that bone marrow transplant offered a potential treatment/cure for our boy, and then I was really scared, instead of grateful, as I quickly learned all the obstacles it would take to see if he was even eligible, as well as what it would take to get him to transplant if he was, and then, oh yes, the horror of what the transplant process was like, and best of all, Evan could be cured, but left deaf and blind in the process. On that day the devil didn’t realize that he picked the wrong momma to fuck with, pardon my language, but no other word could possible suffice in this situation.
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A CB friend posted this yesterday, and I am sharing it exactly as she wrote it, in an effort for you to feel her horror for just a moment....
Four years ago today marks the moment our lives changed forever the trauma of it all vivid in your mind because it never sleeps it haunts you I will never forget when Kevin stopped breathing and 911 working on Kevin in my living room with CPR and chest compressions while I run back and forth to the bathroom vomiting seeing your child lay there lifeless unable to help him your baby you brought into the world I remember the hospital room begging and pleading with God and begging Kevin to stay and not leave us while his lips were blue and the life gone from his eyes and the on call preacher telling us we have to let our son go words spoken easily from his lips yet filled rage in my mind leave me alone do you not understand I thought. to having to leave our son dead on a hospital bed not wanting to leave we sat outside the hospital for two hours in disbelief and shock that's what sets in to protect you I guess. all of the sudden u have this unfunctional mind that can't think or concentrate on anything some amazing friends of ours came to the hospital at 2 in the morning to drive us home I had this disorientation going on in my mind not knowing where I was even though I wasn't lost . I couldn't go in my house for days a sickness like I have never know was with me , for six months we didn't stay at home we would get a change of clothes and leave . After 6 months we came home because we knew we had too. For 2 years we literally sat and lived in our bedroom no one else knew only leaving to go to kitchen for food, bathroom, or work trapped in a prison there's no escape from.going anywhere was a task from the emptiness of the back seat to stores and isles passed by because you couldn't go down them anymore to holidays that you didn't want to be at because you didn’t feel free to grieve among each other...
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One long run on sentence from this grieving mom whose only son was stolen from her by the pediatric cancer raging in this world, so appropriately shows the horror she is forced to live with daily, and to add insult to injury, her husband has been in the cancer fight for more than a year now. For one moment put yourself in her shoes and understand how grateful YOU have to be, WE have to be.
My friend who I walked hand in hand with on the transplant floor recently emailed me and this was her p.s. to me three years after losing her perfect girl....I think I am finally at a place where I don't have to just focus on breathing in and breathing out. I feel like I've lived moment to moment for a long, long time. Now that my head is above water, it makes perfect sense that I would look for you :)
We all grieve differently, that is one huge thing I have learned along the way. But for us grieving moms, our lives are forever changes and FYI to all of you who want to believe that things are getting better for us, you could not be more wrong. What we have done is learned to “ TOLERATE” the reality of our new lives. We have NO CHOICE if we choose to go on living, being productive members of society, desiring to learn to laugh and love once again.
Last weekend a dad sat with us who we had not seen for years at a water polo game. He asked Mark how things were going. I knew what he was asking and I never got a chance to ask Mark if he realized what he was asking and chose to take another path with his answer, which was “yeah, the last two years have been hard, but things are finally starting to pick up”, talking about his business, not Evan. The dad replied with “time really does heal, doesn’t it”, and I wonder if it was then Mark realized what he had originally asked. I wanted to scream out loud at the top of my lungs, “TIME DOES NOT HEAL, TIME ALLOWS ONE TO LEARN TO LIVE WITH THE FUCKING REALITY THAT OUR SON IS DEAD AND NOT ONLY THAT, THAT HE WAS TORTURED IN THE PROCESS, LOSING EVERYTHING ALONG THE WAY AND KNOWING IT AND WE COULD NOT DO A FUCKING THING TO STOP IT!!!!!!!!!!!!!!”, but instead I just filed the conversation in my head knowing it would eventually come out on this blog to you.
People love to hug me and tell me “how good I look”, which I have made a concerted effort to do by the way, hoping that I am getting over it, or getting better, or moving on....on the other hand, I am learning to TOLERATE it, and I think that I managed to learn that I had to do this early in the process if I was going to survive this, and that I HAD to do it for my kids, my husband, my mom, my friends and family, my CB community, and every person who followed our journey from day one, wondering how I was going to be able to manage. I had to show them how to do this, even though I didn’t know HOW I was going to do this. The thought of ending my life, though never thinking how I would actually do about this, and knowing full well I would never do this, was a fantasy I wished would just come to fruition on it’s own, possibly like the Blessed Mother who when ready simply asked her Son to let her be done with her suffering here on this earth and she was “assumed” up to Heaven. Now 3 years and 7 months after touching and smelling my perfect boy for the last time on this earth in that hospital room at the University of Minnesota where we went just 5 months earlier with so much HOPE for our boy, I need to live and want to live for my kids that remain here on this earth. I want to share in their joys and sorrows, and be part of every single movement in their life, something Mark and I have worked toward and deserve to be part of for putting in the time and effort to raise them up to be amazing human being. I don’t want to miss out on that, and they have suffered enough in their short lives and don’t deserve any more tragedy as well, especially tragedy inflicted upon them by their own mother. Not a option!!
So every day, we grieving mothers make the choice to get out of bed, to forge on, to laugh, and love and make others feel comfortable in our presence, so that they feel better “thinking” we are OKAY, and that God forbid it every happens to them, that maybe, just maybe, they too could survive this unimaginable horror.
Happy Father’s Day to my awesome husband.
Evan’s mom
Sunday, June 19, 2011
Sunday, June 5, 2011
The Journey Continues....
So much horrific tragedy in life!! And what amazes me that empires continue to get built, life goes on, and generations generated. But for some of us, tragedy occurs, and for others, more than once.
Just read an article about 10 year old quadruplets whose mother who seems to be losing her fight against a very aggressive breast cancer. She is 48 years of age. B.E.D., before Evan’s diagnosis, I would allow my self on occasion to have horrific thoughts, and one of my dirty little thoughts that I have never ever shared with anyone was would it be better to lose a child or for my children to lose me. It makes me sick to even remember having this conversation with myself, but I did and since I have shared every bit of victory and defeat on this journey, it is time for me to share this bit. I do remember thinking that nothing could be worse as a parent to lose a child, but I could only imagine how horrific it could be for a child/children to lose their mommy especially when they are still under her care 24/7. As the one who now has to deal with the daily agony of missing my boy, I do know that while I seem to carry most of the burden, I realize how much my kids need me, even my 24 year old big girl, and I plan to do everything I can to control the things in life that I can, caring for myself through healthful actions, and hope that I will be here not only to guide, but to share in both the sorrowful and joyful times with my three kids here on this earth. Evan is perfect, and peaceful, and in time we will reunite for eternity, this I know. Alaina, Derek, Mary and my future grandchildren need me now.
Every day I am shocked and dismayed at the horror that goes on in this world. And I am not talking about the stories that make the news like the natural disasters, horrific accidents, murders, or civil unrest going on around the globe, but the every day horror that is happening right in our communities. Two weeks ago I was at Northwood High School for a blood and marrow drive. Very disappointing event over all, and for the first time had a high school student say “recycle your body”, what are you doing with those body parts. Well, not one week later, 14 year old Northwood High cheerleader Ashton Sweet was in a car accident which led to brain death and her saving multiple lives though organ donation thanks to her parents ability to think clearly in the midst of their tragedy. And today I checked on a CB family where the daughter is in the fight with AML, needs to get in remission, then to transplant, and no marrow match. On top of that, her mom, my age, had a routine colonoscopy and has colon cancer. You have got to be kidding me. This is when you realize the devil is out there in full force and all we can do it put on our armor and shield ourselves with God’s grace. Life is big, bad and scary, and I still am amazed now much beauty there is to behold each and every day. And then I remember that God is part of every blessing in our lives.
I continue to have issues with visions of Evan in the fight that just knock me down to my knees. For the first three years I have not allowed myself to go there, but now I can’t seem to stop it them. Our kids suffered so much, and as I have mentioned before, those of us on pediatric transplant floor have seen things no one should have to see, let alone suffer through. And now I am having to deal with the next layer of grief which is dealing with the reality of Evan’s suffering. Sucks, once again.
Along with the grief journey, I am dealing with growing pains and trust issues surrounding the foundation. As I can now see more clearly and have become a self-taught expert in the area of donation of all capacities, I am learning the politics that surround “big business” inject themselves even with us momma and pop operations. I have shared before how a-political I am, having NO interest in the happening in this world that are far beyond this momma’s control. I don’t listen to CNN and I certainly don’t listen to Fox News, and I just am disappointed on a daily basis regarding the lies and mistruths that seem to plague our existence. I abhor people who lie, or bend the truth, no matter what the circumstances. And I refuse to collaborate with those who choose to do business in this manner, even if it means that I have to change the way I run Evan’s foundation.
People forget why WE do what WE do. And when I say WE, it is us “mothers and fathers to be reckoned with” who have lost our children and want to do everything in our power to prevent others from suffering the way we will every day we spend on this earth. This is not for our glory, but for Gods, and it is because of our experience and ability to see that we now have information that we didn’t before, and perhaps that information can help others in the future. And yes, the ONLY reason we do it is because our child has suffered so greatly and we refuse to forget. Call it what you want....honor, memorialize, putting them on a pedestal as I have been told by a friend....we don’t want you to forget our children, and we certainly refuse to forget what “we” have been through and go back to life as it was before.
Forever changed, and forever grateful for the ability to rise above the tragedy and loss, this momma to be reckoned with will not go down without a fight. My faith has provided me with HOPE. HOPE that I intend to share with the world.
Forever Evan’s Mom
Just read an article about 10 year old quadruplets whose mother who seems to be losing her fight against a very aggressive breast cancer. She is 48 years of age. B.E.D., before Evan’s diagnosis, I would allow my self on occasion to have horrific thoughts, and one of my dirty little thoughts that I have never ever shared with anyone was would it be better to lose a child or for my children to lose me. It makes me sick to even remember having this conversation with myself, but I did and since I have shared every bit of victory and defeat on this journey, it is time for me to share this bit. I do remember thinking that nothing could be worse as a parent to lose a child, but I could only imagine how horrific it could be for a child/children to lose their mommy especially when they are still under her care 24/7. As the one who now has to deal with the daily agony of missing my boy, I do know that while I seem to carry most of the burden, I realize how much my kids need me, even my 24 year old big girl, and I plan to do everything I can to control the things in life that I can, caring for myself through healthful actions, and hope that I will be here not only to guide, but to share in both the sorrowful and joyful times with my three kids here on this earth. Evan is perfect, and peaceful, and in time we will reunite for eternity, this I know. Alaina, Derek, Mary and my future grandchildren need me now.
Every day I am shocked and dismayed at the horror that goes on in this world. And I am not talking about the stories that make the news like the natural disasters, horrific accidents, murders, or civil unrest going on around the globe, but the every day horror that is happening right in our communities. Two weeks ago I was at Northwood High School for a blood and marrow drive. Very disappointing event over all, and for the first time had a high school student say “recycle your body”, what are you doing with those body parts. Well, not one week later, 14 year old Northwood High cheerleader Ashton Sweet was in a car accident which led to brain death and her saving multiple lives though organ donation thanks to her parents ability to think clearly in the midst of their tragedy. And today I checked on a CB family where the daughter is in the fight with AML, needs to get in remission, then to transplant, and no marrow match. On top of that, her mom, my age, had a routine colonoscopy and has colon cancer. You have got to be kidding me. This is when you realize the devil is out there in full force and all we can do it put on our armor and shield ourselves with God’s grace. Life is big, bad and scary, and I still am amazed now much beauty there is to behold each and every day. And then I remember that God is part of every blessing in our lives.
I continue to have issues with visions of Evan in the fight that just knock me down to my knees. For the first three years I have not allowed myself to go there, but now I can’t seem to stop it them. Our kids suffered so much, and as I have mentioned before, those of us on pediatric transplant floor have seen things no one should have to see, let alone suffer through. And now I am having to deal with the next layer of grief which is dealing with the reality of Evan’s suffering. Sucks, once again.
Along with the grief journey, I am dealing with growing pains and trust issues surrounding the foundation. As I can now see more clearly and have become a self-taught expert in the area of donation of all capacities, I am learning the politics that surround “big business” inject themselves even with us momma and pop operations. I have shared before how a-political I am, having NO interest in the happening in this world that are far beyond this momma’s control. I don’t listen to CNN and I certainly don’t listen to Fox News, and I just am disappointed on a daily basis regarding the lies and mistruths that seem to plague our existence. I abhor people who lie, or bend the truth, no matter what the circumstances. And I refuse to collaborate with those who choose to do business in this manner, even if it means that I have to change the way I run Evan’s foundation.
People forget why WE do what WE do. And when I say WE, it is us “mothers and fathers to be reckoned with” who have lost our children and want to do everything in our power to prevent others from suffering the way we will every day we spend on this earth. This is not for our glory, but for Gods, and it is because of our experience and ability to see that we now have information that we didn’t before, and perhaps that information can help others in the future. And yes, the ONLY reason we do it is because our child has suffered so greatly and we refuse to forget. Call it what you want....honor, memorialize, putting them on a pedestal as I have been told by a friend....we don’t want you to forget our children, and we certainly refuse to forget what “we” have been through and go back to life as it was before.
Forever changed, and forever grateful for the ability to rise above the tragedy and loss, this momma to be reckoned with will not go down without a fight. My faith has provided me with HOPE. HOPE that I intend to share with the world.
Forever Evan’s Mom
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