BRAVERY PROJECT: Guest blogger: Maggie Miller, “She is alive…and I am by her side.”

I have been profoundly moved by the bravery from a family that I met years ago. Please get a box of Kleenex and read Maggie Miller’s story of bravery (yes, you are BRAVE, Maggie).  Pictures will be added as soon as possible. Thanks, Laura Anne  Follow this project @BeforeYouBook #BraveryProjoect

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Bravery. It doesn’t come from the inside. I know. I am often described as being “brave,” but never once have I ever felt brave. I have felt terrified. I have felt overwhelmed. I have felt hopeless and lost, but never once have I felt brave.

Bravery is something that is perceived from a distance, a retrospective observation of another person. So many people will tell you of my bravery, even those whose bravery I see. Yet, I cannot feel it. It’s not that I’m distant or egotistical. It is the truth that those who are brave, even those who decide to be brave, are often many things, but brave is not one of them.

 

I have a daughter, Sarah, whose whole life has been one big brave battle. She is the bravest person I know. She has been poked, prodded, examined, stabbed with needle after needle, held down against her will, fought back, cried and turned around and smiled and laughed. That is brave. I can only imagine the terror in her nightmares. What do you expect when a child’s own mother, the one being an infant is truly dependent on, forces her to swallow medication or stabs her with a needle or holds her down herself to let others do these things? The answer is simple, and oh so painful. The only thing you can expect is terror. Accompanied with the sympathetic nervous system fight and flight response; and of course a whole lot of tears (mostly mine).

 

But she faced it. She did it and she is amazing. She had no choice. She was forced to be brave. And I held her little body and kissed her little head. And she wears her battle scars, both physical and emotional, a little embarrassed (though she shouldn’t be), but she is alive. And she is well. And I am by her side. The war might be won, but there are still battles to fight. She struggles every single day. I help her when she falls, but mostly just watch her grow; nudging her along this unfair road that is her life, intervening to make her challenges a little lighter. Her courage is astounding. I see her as so much more that I could ever be. I tell her that it’s going to hurt but she has to do it anyway. She does it. Reluctantly, but she does. We bribe the crap out of her.

 

Being brave is not always the immediate choice when faced with a problem. It usually only appears after you’ve decided to do something, stand up for what you believe, fight for your life, etc. It often comes when the other choice is not something you want to face or accept. Fight the cancer or die. Fight for freedom or be a slave. Bring health care to the masses or have death and disease run rampant. Overthrow the corrupt system or be corrupted. Often eminent death is the deciding factor in becoming brave. In my case, I was never brave; all I did was take care of my baby the best I could. I have fought for her life and I continue to fight for her to live. Children deserve every opportunity to be healthy, educated and happy. There is nothing I wouldn’t do to make sure my children have those opportunities. I only appear brave because I have done the unfathomable. I cared for a sick child when there was little hope, when my own body was exhausted to the point of complete shutdown. I never slept, barely ate (though I easily gained more than 50 pounds). It was the single worst thing I have ever experienced. But it made me realize some things:

 

  1. I never, ever, EVER want to go through that again. . . But if I had to, I know I need to know what to expect. In the event of relapse we will be inpatient facing a bone marrow transplant and roughly 120+ days in the hospital with one very sick child, another terrified and neglected child (I wouldn’t leave her alone) and a huge emotional void in my spousal relationship, if we can find a match. I don’t look for the worst, but I have to know what could happen so that I will be ready if it happens. I hope we never have to face that monster again and we do so much to avoid it, including eating an organic diet and growing our own food as much as possible.
  2. I will survive if I miss a meal or a night’s rest. I will not just survive, but I will reset my body and be better off for the skip. It will be challenging and emotionally taxing, briefly, but I will survive. I always miss meals and sleep the night/week before a follow-up appointment. I used to miss the night before the testing to determine the current status of the cancer. It’s part of a whole mess of emotional train wrecks just before scans/checks we all call “scanxiety,” and it’s normal. At least in my world.
  3. I learned to live in the moment. We celebrated Sarah’s birth every month while she was in treatment. I had no confirmation that she would be one to live through treatment. I didn’t know how many birthdays she had left. I wanted her to know she was important and to “Celebrate Sarah” every chance I got. She was crowned prom queen alongside a slew of friends who gained their wings and flew away at the age of 2. No one told me I would be the one to be so fortunate to be able to wrap my arms around my baby and tell her I love her every day or so for the past 8 years. And my heart breaks for each and every parent who cannot. For every single child lost, through cancer or otherwise, because. . . No parent should EVER have to bury their child. One of my favorite quotes applies here: “Dance as though no one is watching, love as though you’ve never been hurt, sing as though no one can hear, live as though heaven is on earth,” (Souza) EVERYDAY, because you don’t get a second chance to live today.
  4. There are always going to be obstacles. There is no such thing as smooth sailing. . . At least not for long. Sarah faced a tiger in the ring of the coliseum and won her battle, but she didn’t come out unscathed. She has physical scars, cognitive scars and emotional scars from her battle. Some we don’t even know exist yet, I’m sure. Every child we know who has endured chemotherapy has cognitive dysfunction of one type or another, Sarah is no exception. She has physical limitations, though with some hard work we should be able to minimize these. She has emotional struggles that may never go away. She certainly will develop more problems as she grows. Statistically, 90% of children who have received one chemotherapy drug in particular eventually develop a cardiac concern which will require surgical intervention. I hope she is in the 10%, but I need to be prepared (see #1). We will face these battles just like the others as they present themselves. In the meantime see #3.
  5. It is OK to feel. It is ok to be upset, or happy, or angry, or embarrassed, or excited, so long as you are not negatively impacting other individuals. Let me explain: It’s not ok to hurt someone else, but it is ok if they empathize with you. If you are sad and crying and another person feels bad because you feel bad, they are human and are allowed.   There were moments when I was so lost in the flood of emotions I couldn’t see beyond my own bubble (I unconsciously attempted to protect myself by limiting my perception to a short distance effectively rendering me clueless as to the world around me). You have no idea how big emotions can be until you experience it first hand, like tidal waves of emotion, amplified immensely. And the emotions were all filled with enormous guilt. A moment of joy was often accompanied with the thought of the family journeying home for the final time to say good bye to their child while you were celebrating the end of a chemo cycle or finally getting out of the hospital. A moment of sadness was accompanied by the same guilt that you should be glad for what you have. These slishy, sloshy emotions are best dealt with one at a time, allowed to wash over you and to dissipate. Once I began allowing myself to feel my emotions, I gained a much better control over them.
  6. Kids are amazingly resilient. And they bounce. My Sarah was so mad at me (steroids as part of treatment) that I wouldn’t play the movie, she jumped out of bed as I was attempting to get it into the player and push play. She landed on her head and scared the devil out of me. . . And her nurse. . . And the fellows on for the night. . . And probably half the hospital staff. She bounced and got herself a CT scan in the middle of the night which was negative. She was so sick that first year I had day terrors of her death. The month of October 2007 we spent a total of 4—24 hour periods NOT in the hospital (inpatient or clinic appointments). I was terrified and she always smiled.
  7. And those who work with sick kids are not human, they are angels. I cannot thank them enough for all they put up with and did for me in addition to caring for my baby. Each and every one of them, from the front desk staff checking kids in to the cleaning crew to the nurses and doctors, has something different inside that is so admirable.

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