Forgive and forget?

My heart is pretty heavy today, happenings of the last week have wounded me; re-opening old wounds. Through this journey into the past, I realized a few things; forgiveness is harder to do in completion than we think, and forgetting is easier, isn't it? Well, apparently not.

 I had all of these feelings put away in little boxes and tied with black bows. They looked tidy and I thought that they effectively closed chapters in my life book. I had many justifiable but negative emotions that I tried not to feel post-adoption, I had a very dear friend who let me talk through the pain and the betrayals and I looked at the two new daughters in my care and I tried to let go. For their sake, for my family's sake. I HAD two daughters, not the two we originally set out to adopt, but my feeling was;  if they were meant to be ours, nothing would have stopped that from occurring. I had to believe both precious girls were with the families intended for them all along.  The two beloved daughters in my care were meant to be mine. I was able to pray for the other families and be grateful they gave the two girls I loved from afar a family. It did not happen overnight, but it happened.

Let it go, move on, but does anything ever go away completely, I learned this week that sometimes it does not, nor should it, I guess.  How can we grow and improve ourselves if we do not allow the hard times to define us as much as the good ones?

I saw this week that anger, even if it is justifiable feeds on the soul like the cancer it is, and it can change how a person views the world. It shapes every interaction because it consumes every fiber of our being. If you are living in anger, it is so hard to feel love.

Life after Triple Negative Breast Cancer-one thing I have to say about breast cancer awareness

Triple negative breast cancer; read about it here: http://www.breastcancer.org/symptoms/diagnosis/trip_neg/behavior

 I rarely visit my old email address, when I do, I realize much of the email I get there has to do with breast cancer and health issues; Mercola.com,  supplement companies, Medscape, PubMed, TNBCF, FORCE,  Susan Love, Susan Komen....for a very long time my life revolved around breast cancer.  After my mastectomy I was sitting at home recovering and frankly going bonkers,  I was used to working. I had to heal from surgery, so no work, which for me was teaching fitness classes, I had nothing to do but think about CANCER...BREAST CANCER... I HAVE CANCER.... my poor family and friends, I went into research mode, there are some websites (survival rates anyone) that you should stay away from, maybe completely, but at least not that first week after the devastating news!

The oncologist appointment had not happened yet, they waited until after the pathology report came in to assign me one of those! After trying to talk to numerous people about my diagnosis and being dismissed with "God will heal you" or "You will be fine; my sister, aunt, mother, best friend, etc had cancer and she is fine, dead, disabled..." I decided to search for support online, I belonged to numerous Yahoogroups, and made good friends there!  I found an inactive group and said hello, three people responded, but in a way, I knew we could have a good talk!  I ended up moderating that breast cancer group after the existing leader bowed out.  It grew quickly and before we knew it, there were thousands of posts a week. What a tremendous life-line for all of us.

I met some of the most courageous, generous, kind (and sometimes sad, grumpy, and world-weary) women on The Breast Cancer Survivor Network.  We helped each other through a terrible time; we cried when newly diagnosed women said hello the first time, we cussed and railed at how unfair it was, and we GOT MAD because it was safe to do there.  We laughed at life with no breasts and prosthetic mishaps, we cheered when someone finished treatment, we prayed A LOT when their cancer "came back", and we said heartbroken and tearful goodbyes to women we loved like sisters when their tired bodies could fight no more. It still hurts that they are no longer here. Some of us still talk, some have moved on; when we lost three beloved members in quick succession three years ago, I think we lost heart.

Facebook gained huge popularity around the same that our support group fizzled out. It has never been able to build a community like we had then, despite groups there, there is something that feels less safe on Facebook.

I thought my life would always revolve around breast cancer and researching every new miracle cure out there. If an article pops up, I read it, but I no longer feel compelled to KNOW EVERYTHING.  Life moves on, and my life is so full and I am more grateful than words can convey that I am a 11 year survivor of TNBC.

I am different than I was before cancer entered my life, I can no longer teach my beloved fitness classes, for me, it was not JUST a job, but a calling. However, my poor body cannot handle the stress of those workouts now, instead of making me feel healthy, I got sick more often, I was weak and tired all the time while teaching post-cancer, it literally meant I spent the next day in bed if I taught a class the day before, it no longer improved my life, but it was so hard to cut back.

After our adoption in Ukraine; I quit teaching entirely, and now I have the energy for everyday life again!  Not teaching means I am not a slender person any longer. My poor arms wiggle and jiggle, LOL, the horror of it! (that is lymphedema for the most part, but still) My abs are softer and my waist bigger, sometimes I look in the mirror and do not recognize myself! The way I think, eat, walk, sleep, etc, all changed after cancer BUT I am still alive, I may be different in body and mind and spirit, but my capacity for love has increased, I am so overly sentimental now and cry at sad movies, I used to think I had to be tough and not show emotion; now I do not care if anyone thinks I am weak because I FEEL things deeply!

My doctors thought I would not survive the year after chemo, and when I did, they thought I would be gone in 5, they checked incessantly for cancer lurking in my body, to them, to me, my being alive was a bit of a miracle.

Cancer changed my life, for better or worse, I am who I am now. I am OK.  To all those survivors out there; I am so happy we are still here! To those just beginning a cancer journey; you will learn you are stronger than you ever thought possible, people who you did not think would help you, will be there for you, others may leave out of fear, love them and forgive them if you can.

My Mom

 This photo of my mother showed up on my sister's Facebook page. I had never seen it before.  When I thought of my mother the past 39 years since her death, I remembered her beauty, her grace, her sense of humor, her loving kindness to all people, and the intense sadness that crept into her life occasionally...depression.

When I was 12, my mother was diagnosed with late-stage breast cancer.

Her disease was so far advanced they had to remove her entire pectoralis muscle when they took her breast. The procedure, which is rarely done in the 21st century was called a Halsted Radical Mastectomy.  They had promised our mother they would wake her up if it was decided they needed to take her breast. They failed to do that.

Halsted Radical Mastectomy

My father brought my sister and me to the hospital to see mom after her surgery, she was wearing a brave face and as always, it seemed she was worried more about us than herself.  She had a large bandage on her chest, she had not seen under it yet.  I honestly do not remember when the doctor came in, I was terrified for my mother, she had never been really sick before, and my father was not known for his sympathy, empathy, or loving nature. In essence, he was a man mired down in anger and was so dissatisfied with his life, he was unkind to all of us.  I and my sister had to face our fear for our mother with no adult telling us everything would be OK.

At some point in our visit, our mother pulled the bandages away from across her chest and saw that her entire breast was gone.  The look of shock on her face is one I will never forget, she said "You took it, you promised you would tell me first" The mining doctor; ( early HMO type of physician) with no emotion told her they decided to go ahead when they saw how far cancer had spread. She looked utterly betrayed and wept bitterly. The loss of her breast was also the loss of her husband, as my father would no longer allow her into the marriage bed because "she was no longer a real woman".

I left childhood behind that day, but my mother, bless her, wanted to make my life as 'cancer-free" as she could, leaving me out of most conversations about her treatments or how she was feeling. I knew almost nothing about what she was truly going through.  I did know that my father had left her to fend on her own while inhabiting the same home, he never held her in his arms again. I was beyond angry with him for his behavior, and he had never been a stellar father, to begin with; cruel, angry, abusive, a human being so dissatisfied with the way his life turned out, he took it out on us. He was a broken man in so many ways and one of the most unhappy people I have ever known. Only now can I look back at who he was with some sympathy, but he did so much damage to all of us.

I needed my mother desperately, but she was fighting for her life and her Cobalt treatments were brutal. She was exhausted and depressed and more unhappy than I had ever seen her.  I did all the things a child screaming for help does; ditched school (wild child that I was, I bought day-old doughnuts with my two friends and hung out in front of the movie theater), I wrote excuses for myself saying I had doctor appointments, I never got caught until  my mother wrote one for me and they thought hers was a forgery... at some point the following summer I went to drinking parties with friends, being LDS meant I had never really been exposed to drinking or drinkers, I discovered I hated alcohol and I also noticed that high school boys wanted to get the middle school girls drunk so they could take advantage of them. Since I could not swallow the Budweiser beer given to me, I did not get drunk, I pried my friends out of that party because I knew they would be raped if I did not. I never returned, and I never spoke to those young men again, I was disgusted by their behavior. That summer I learned that many men lived for sex and thought of very little but sex. I was beginning to hold men in disdain, there were none I could look up to any longer.

World Sown Syndrome Day 2016

Amanda is 10!

Raising money for the Buddy Walk!

Join the Levario Terrific T21 Trio in their efforts to raise money for this years Buddy Walk!! Our family is a team unto itself! We appreciate every single donation big or small!!

Follow this link:
https://www.ds-stride.org/tucsonbuddywalk/profiles/team/23 to join our team or donate!

Happy 9th Birthday Amanda

Amanda is 9 today, she is having fun eating chocolate covered ice cream (almond creme) and watching her favorite movies!

We will not have a huge party for Amanda, they stress her out and are not fun for her, so we will celebrate quietly.

Amanda is saying more words every day, she is beginning to shake her head yes and no, which is fantastic for her, it gives her more of a voice, she is fond of NO. Since she is mostly non-verbal, but likes to surprise everyone with random words here and there.  She communicates with gestures, limited sign language and actions.  We have tried many different devices and communication tools, so far none have resonated with her, we are filling out paperwork to get her an iPad to use as her communication device. Her speech therapist and we are hoping it will be exactly what she needs. We have a few speech programs on the family iPad, but since we all share it, it cannot be used exclusively for her.

She has made gains in development, but since she was so very delayed, she is still very far behind other children her age (with Down syndrome). We try not to compare, she is her own person, unique and special in many ways.

She likes to watch Barney and High School Musical, she is a huge fan of most musicals. She bounces on the couch as her way of dancing to the music, she can get pretty high in her bounces.

She adores the iPad and stresses if it is not her turn to use it, will repeatedly try to take it from whoever has it. Her favorite application is Endless Alphabet and a very annoying music program that plays golden oldies like "My Clementine" and "This Old Man", she often switches the language to French and loves hearing "Old MacDonald" sung in it.  Her parents are not as thrilled with the constant music.  Mommy turns down the sound and Meghan or Kara sneaks over and turns it back up, so far Amanda has not figured out how to do this. She loves to scroll through apps too, and will turn on so many she kills the battery!

We have to limit her time on the iPad because it does seem to make undesirable behaviors worse at the end of the day.  (Scratching, biting, pulling hair, throwing things, knocking things off tables) We notice that one hour usage with a 3-4 hour break in between each use works best for her.

She carries baby dolls around the house and likes to lick their faces. She has favorite dolls, and likes talking toys the best. Toys made for toddlers hold her interest the most, toys for older kids often get thrown and broken.

She is taller, but still pretty thin, she weighs under 30 pounds, her doctors say she follows her own growth curve and are not overly concerned about her size, people often think she is a 4 year old.

She is silly, sweet, and autism also makes it hard for her to relate well with others. She wants to be held by most people, but often scratches them or pulls their hair, if they wear glasses, she knocks them off their face. I am so grateful to the patient people who continue to try to form a bond with her despite those behaviors. We work very hard on helping her interact appropriately, it is a constant endeavor. Some days the behaviors get pretty challenging, some days she has very few. The dual diagnosis of autism and Down syndrome is difficult for her, for us, and for our family, but we are never going to give up on her, we love the little scamp, she is our daughter now and forever.

Happy Birthday Amanda Kristell!!