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
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