Tag: Survival

Living With Autism

Living With Autism

My amazing daughter Kayla is our oldest, she and her husband Jeremy have three boys diagnosed with Autism. Recker is the oldest 8 and 1/2, Ezra is 5 and Theo just turned 2. We love these boys so much, our entire family is in love with them, but even being the ‘grandmother’ (Bonbon) I don’t see the day-to-day struggle, the melt downs and the emotional rollercoaster Autism creates in a home.  Kayla does such a great job creating awareness on social media and within the walls of our home, still I can’t imagine the 24 hour care she gives them individually.  Each one of these special spirits come with their own needs, Recker is amazingly sweet and kind but is non-verbal, still wears a diaper, has to be constantly watched and shows his frustration by taking it out on mom or dad with a fist once in a while. Recker also loves to be outside, swims like a fish, is intrigued with fire and loves Disney movies.

Ezra age 5

Ezra, boy oh boy, this guy is talking up a storm but deals with emotional break downs daily, he can be irrational and moody it’s a constant wining problem. Ezra loves to be around family, plays well with other’s and wants to be an ‘ar thist’ (artist) he’s also scared to death of creepy crawly things, spiders, bugs etc. He is probably the most literal child I have ever met, if I said to him “You are cute” his response most likely would be “No, I am Ezra” This sounds like typical                                                                        behavior and yes, it could be however you’d have to see how he reacts to understand the emotions behind his fears. When he leaves our home he always comes up to me and say’s “I sad” I already know what his response is but always say “Why are you sad?” He comes back with “I going to miss you, I not want to go home” but if his parents were to leave without him there would be a total meltdown. So we hug, say “I love you” and off he goes.

Theo age 2

Theodore, Theo, Teddy….those are his names.  No matter what we call him he comes running.  Theo is on the spectrum, at what level we don’t know.  Kayla say’s he shows signs just like Recker and Ezra did, so right now while he seems typical we enjoy every minute of his cuteness because we never know when or if regression will start.  This little guy is pretty content, he points and shows us things he wants, takes our hand to lead us to rooms to play and is just starting to say a few words.  Sunday night he took all the Disney magnets off my freezer one at a time and brought them to me saying “who that?” and as a typical child would do at age 2 he is constantly asking “what that?” while he points to something he wants us to explain.  If I ask him “Do you want a popsicle?” (or just about anything I ask if he wants) his answer is “uh huh” while shaking his head “yes”  He also loves the outdoors, but does not like to swim in the pool like Recker and Ezra do.

Kayla and Jeremy are absolutely involved in these boys lives, caring and loving for them no matter the circumstances.  I know they have their moments when they need space to cry, I also know they sometimes just laugh because what else can they do? Even as Kayla’s mother I will never understand the constant emotions they endure. I’m not sure I could do what they have and will continue to do, but I am eternally grateful for Kayla’s openness and honesty when teaching me about ASD. She is the mom who constantly researches and studies, wanting to know everything she can to help her boys process and deal with their diagnosis.

This is something she recently posted, it broke my heart but it is the reality of any parent who has children with Autism, oh and let me interject here one of the things Kayla kindly taught me–people with Autism are diagnosed it is not ‘who they are’ saying a child or person is Autistic is defining them.

and my personal favorite post, I don’t live in ‘judgement’ so this does not offend me, if it does offend you I’m sorry but it is the real life of so many families dealing with Autism. I’d like to also insert at this moment children with or people who are diagnosed with Autism are not defined by the disease, it is something they ‘have’ not ‘who they are’ Autistic defines them, being labeled as a person who is  Autistic is hurtful and not politite

This was her post and her comment was “We are literally getting our asses kicked over here.”

 

XOXO Monya Bonbon

 

 

The Truth About Scars

The Truth About Scars

What the hell is beauty anyway? It seems the world in general is quick to measure something none of us can really define.  I mean let’s be real here, I adore the classic look of Jackie Kennedy, while some of my best friends think she looked stuffy and too conservative.  And what about the color of your kitchen-Do you love it?  Maybe I don’t love it, but I love that YOU love it.  I think something is beautiful because I say it is, not because the world does.  If I say the scars on my breasts, or the droopy face I am forced to live with is beautiful, then it is.  I’ve always struggled with the concept of ‘beauty’  why it matters, or what it means. Maybe because I was told as I child I was not beautiful; ‘boobless’ was a common phrase sent my way. My life was ugly growing up, I was marred by deceit, anger, trauma and pain.

My body is riddled with scars, some are visible to most people, some are hidden deep within my soul. The story behind each and every one of my scars has molded me and helped me become the woman who I am today-someone I like.  I for one do not want to live in a world where beauty is limited to what other people say it is? Do you want to live in a world where we try to contain beauty into a small little box?  Beauty is undefinable and some may say uncontrollable, it is an experience not a ‘thing’

I chose to make my own rules, define my own beauty, dismantle the boxes, and break all the celebrity rules, I am and should always be defined by my self-worth, my integrity and the love I have for all of God’s creatures……and when I say ‘creatures’ I’m including the human race, seemingly the hardest critics of all.  It wasn’t until I lost my smile that I realized I had always took my smile for granted. I want to smile so badly, I want to belly laugh with my girls, I hope they will remember me with a smile.

Lights, camera, action …..Hollywood has decided that beauty is in the glossy pages of a magazine, or a wafer thin model.  Beauty has become superficial; eye color, hair texture, and the number on the scale. Beauty has become something to be weighed and measured.  I may have fed into that before I was diagnosed with breast cancer and endured over 41 surgeries in 8 years.  I no longer see beauty as merely something flawless or perfect.  To me beauty is a grace point between what hurts and what heals, between the shadow of tragedy and the light of joy. I see beauty in my scars, emotional and physical. Doesn’t everyone have some scars?  Whether freckles from sun damage, triggers- hearing, tasting or smelling a reminder of the past.  Maybe you’ve had a broken heart or a broken bone. Whatever it is, or when it comes (and it will) live with no regrets, do what you can to protect yourself, but love the scar it may leave on you.

Scars, I mean my scars are beautiful, it means I’ve lived an amazing life, I’m a fighter they remind me of my inner strength and propel me to want to be a  warrior and survivor.

XOXO Monya

Memory Of Cleveland Clinic

Memory Of Cleveland Clinic

Every 3rd of July I am reminded of fighting for my life in The Cleveland Clinic. Four years ago today I was in surgery, literally hoping for a miracle. Little did I know the miracle was sitting right here in Arizona, with Doctor Lettieri.

On July 3rd 2014 I was rolled into surgery, Eric gave me a kiss on the forehead as they wheeled me into the operating room. Tears rolled down my cheeks onto the pillow, nurses kindly asked what they could do to help; shaking my head, watching them walk away I knew there was nothing anyone could do. Not even with the best surgeons on the face of the earth, no one could be able to bring my smile back.

The worst was still ahead of me, waking up in the recovery room after an eleven hour surgery I felt my head. It was full of staples, like a train track from one side to the other and down the back of my skull. My ear was pounding and swollen. I just wanted to see Eric and go home; after seven weeks in Cleveland I was depressed, sad and disoriented.

The next day, the fourth of July 2014 is a day I will never forget. No attending’s were in the ICU, the residents were in charge for the Holiday. Pain beyond my belief was surging through my body; a senior resident forgot to put orders in for pain medicine; I thought I would die on that day. I was prepared with letters to my children and dear husband. When the resident did not answer page after page to come to the ICU-I went further and further into a deep dark place, actually wanting my life to end because the pain was so bad. Nurses rubbed my legs and listened to me sing “Be Still My Soul” and “I am a Child of God” over and over again. It was an hour and fifteen minutes the senior resident finally make it to my room, followed behind him were other junior residents. He questioned my pain like I was faking; wondered why I was crying, and asked me too many questions; which I believe now was a senior resident showing off for the junior residents. I was gasping for air I couldn’t speak without trembling, he finally gave me the pain medicine. Even after the pain medicine was in my system my body shook like a baby, composing myself was difficult.

This is one of the junior residents Brendan Alleyne-he came to visit me after that incident and held my hand. The compassion he showed was nothing I will ever forget, I wish I could tell him what his acts of kindness did for my faith in the future of medicine. I’m thinking about him today, Dr. Lettieri is constantly telling me about the ego’s of residents, just like the senior resident I encountered at Cleveland Clinic. They forget who they are serving, I often wonder if he would have treated me different if I had been his mother, wife or child. Thank you Dr. Alleyne wherever you are today, I believe you are caring and sharing for your own patients now and hopefully learned something from this experience that will help you always remember patients are real people, with real families and a story to tell.

XOXO Monya

I Can Only Imagine

I Can Only Imagine

My body has physically been through so much trauma, I often wonder how I have survived it all.  Yesterday I had the pleasure of picking up Recker from school. My Heavenly Father knew I needed this sweet boy in my life, he was born just four months after I was diagnosed, I was blessed to be able to watch him when his mom (my daughter) went back to work.  I will never forget the day I stood at the top of my stairs and begged Eric not to go to work, the depression was so bad during chemo I wanted to literally die. Eric looked up at me and said “Your almost done babe, just keep fighting. Recker is coming over today you need to be here for him.”  I sat on the floor and bawled as I listened to him shut the door.  I couldn’t imagine one more day of throwing up, pain and depression.

When Recker arrived I dried my eyes and held him in my arms.  I’d make it through another day staring into his beautiful eyes, the focus on him kept me alive I loved taking care of him he needed me and I needed him.  Within a year he was diagnosed with Autism, although we were incredibly sad, we also had no idea what autism was or how it would effect our family.  Eight years later, I constantly wish I could be in his head and understand what he is feeling or thinking.

When I picked him up from school, he got in the back seat put on his seat belt–I looked back at him to make sure he was safe, smiled put my finger to my chin and said “I love you Recker” he then put his finger to his chin and said what sounded to be “I love you.”  We drove in silence, well except me talking to him about his day and how school was–he stared into the open air with no response.  When we arrived at my home he immediately put his swim suit on and was ready to dive into the not so warm water.  I sat and watched him swim for over two hours with no verbal communication.  He was perfectly content and so happy.

I realized while watching him, it’s us that are sad for him-he will eventually if he hasn’t already understand that he is different, but we try to teach him he is not less than any other child or person-just different. That night I went to see the movie ‘I Can Only Imagine’ a true story I recommend everyone to see.  It was difficult to sit through, this boy was abused physically and verbally by his father and so many parts of it reminded me of my younger years.

Tonight as I ponder the words from that song, I tried to lose myself in the words of the beautiful words. I can only imagine what it will be like to be in Heaven once again with Recker, both of us with perfect bodies and minds, no more trauma or mis-understandings just pure love. I will finally be surrounded by the unconditional love of a God who has reached down and pulled me out of difficult times. I can only imagine when that day comes my heart will be entwined with perfect knowledge of exactly what God see’s in each one of us.. I will probably have a hard time speaking, but we will not be able to get Recker to stop talking, it’s interesting in our lives we take so much for granted. I cannot image living in a world where you want so badly to communicate with people, especially the people you love most-family. Imagine how hard it would be to understand every word other’s are saying but not being able to respond. What a joyous day it will be for me to see Recker embrace our Savior and hear Him tell Recker what a special boy he is.

On a few occasions I have had the opportunity during surgeries to visit Heaven and see a glimps of what I believe is the most beautiful, perfect place I have ever visited.  Because of those visits I have been granted,  I want to live my life in a way my family will be proud of, I want to help and serve other’s I will do anything it takes to live there for Eternity once my body is ready to part from this world. It is glorious and beautiful nothing hear on earth compares to Heaven–I will be with Recker, Ezra and Theo and hopefully my entire family for eternity–I love that thought.

Love Monya Bonbon

 

 

It’s Not Your Fault

It’s Not Your Fault

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So many people have made this remark to me since my book was published “You know it wasn’t your fault right?”  The truth is, yes now I know that, but at the time I thought it was all my fault.

It wasn’t my fault I wasn’t protected from getting hurt at the hands of an adult.

It wasn’t my fault I wasn’t told how much I mattered, and what my individual worth was.

It wasn’t my fault I had no voice, or that I was powerless and didn’t know how to say “no.”

It wasn’t my fault I didn’t now where to draw boundaries, or how to protect my heart, mind and body from being crushed.

It wasn’t my fault the people who should have been protecting me, and guiding me were too involved in their own lives to keep me safe.

I grew up without knowing where to draw the line between abuse and love, actually I never felt love and because of this I allowed other’s to hurt me, when really all I ever wanted was to feel unconditional love.

None of that was my fault.  Growing older and becoming a woman I learned how to let myself feel anger, disappointed, and trust by allowing those emotions to be real.

I think it’s important to let yourself be angry.  You should be angry that you were never told how much you were worth. That you never protected yourself because nobody ever protected you.  It’s important for you to know you did not allow people to violate you. Those lines should have been there but never were because you weren’t taught how to draw those lines in the sand.

Because I wasn’t  taught how important I was, and how much it I mattered it took cancer for me to understand how much I love life, and how to find happiness. I do this by bringing joy and  happiness to other’s, I serve everyday someone who needs love or simple remembrance that people do care.

I needed to first let the anger rise within me. Allow myself  to cry tears of rage and grief for all I had lost. So much was taken from me – other people look life, light and fun from my life–those things I can never get back, but I can choose today to move forward and be happy.

My advise to those who have felt the feelings of abandonment  is to use that anger to fight for yourself in the way you should have been fought for. Use it to reclaim all that has been taken, to reclaim your heart. Let the anger become a fire that rages in your soul and burns away the tarnish that others have left upon you. Let the flames consume you, let them purify you, let them cleanse you and refine you until all that is left is the beauty of who you really are.

Your worth is great. You were created by the same hands that created the galaxies and the stars and the oceans and the storms and the wind that rages across the four corners of the earth. You were breathed into existence, not by accident, but with purpose, with promise. The entire universe listens just to hear the beating of your heart and the whisper of your breath. You were meant to be here. You were supposed to be here.

You were wanted here, you have a purpose, find it and run with it.

You are worthy of the kind of love that nurtures your soul and heals your heart. A love that sees your value and worth and believes in you. A love that is strong and kind, loyal and true. A love that brushes the hair from your eyes and kisses your forehead and gives you its jacket when you are cold and holds your hand when you are scared and draws you into its arms and doesn’t let go until it stops hurting. You are worthy of someone whose feet are anchored; who loves you when you radiate with the light of the moon and stars, and loves you even harder when you are cast in the shadow of your own cold sorrow.

You are worthy of a love that will never, ever hurt you, the moment you come to know this truth, is the moment nobody can ever take that away from you again.

XOXO Monya Bonbon

Joy

Joy

 

I’m not quite sure why my life has been spared, or why I have been blessed with an abundance of heavenly awareness. The only conclusion I can come to is that I know He lives and has a plan for me.

It’s difficult to see other people go through pain and suffering-the same pain I have felt-it takes me back to days of brain fog and confusion. It makes me feel guilty when someone with a far better chance of winning the war than I had is given news of hospice–why? I wish I could answer that question–I wish I could take away the heartache of watching family trying to remain hopeful and optimistic–I wish there was one answer for everyone-the truth is we are all individuals experiencing life and every ‘body’ is different.

I remember the day I decided I was not quite done with my self transformation, I knew there were still infinite cities to visit, brilliant colors to see and chances to consider. I had a dream, I saw myself completely healed and full of joy. I believe there is a difference in being happy and feeling joy–happiness is a choice and is an action word it is contentment, cheerfulness and delight. Joy on the other hand is part of who you are-it’s the emotion evoked by well-being. It has nothing to do with what you own or the circumstance you are in.

In looking back on the highs and lows, there are some moments of clarity and satisfaction– days that were filled with love and other days that were occupied with thoughts of death and despair. What I recognize now is only those days of unconditional love and see that they were everywhere-running through the fabric of my life like threads of gold waiting for me to shine.

I’ve been blessed with optimism and it is true there may never be a more ‘perfect’ time than NOW….and right NOW chooses me-joyfully, completely in return.

Monya Bonbon

Celebrate

Celebrate

Every time someone in my family celebrates a birthday (especially my grandchildren) I thank the Lord for allowing me to be on earth for one more year. This month I have three grandchildren’s birthday’s and my daughter in law. I am so blessed with an amazing family. Tonight driving home from Phoenix’s second birthday party I was teary thinking about how much I dearly love these little spirits. Children have so much they can teach us about patience, kindness, honest and most importantly child-like happiness.

There will be times in your life when you find yourself right in the middle of the place you are meant to be. I’ve learned to invite those times, notice those times–Live for those times–today was one of them.

Monya Bonbon

Fight On

Fight On

The last week has been a whirlwind of emotions and challenges. When I face those crappy days, I go into my closet shut the door and either scream, cry or both. I allow myself enough time knowing as soon as I walk out it is gone, I slough it off and start over. I wish I had done this when I was raising my children–it would have saved a lot of raised voices and hurt feelings.

There are days that are really good too–I go into my closet laugh, give thanks knowing being humble is important, but sometimes I just need to be proud of myself-then let it go!

If I look closely, very carefully past the challenges, the turns in the road, and all the distractions. I’ve noticed something and I love it….I”m DOING IT.

Right now I am doing life. Despite all the background noise,the non-sense, and the distractions. I have doubts that sometimes tell me otherwise, but I am doing it. I am creating my beautiful life, I am traveling in the right direction.

I set aside those doubts, give myself some quiet time to settle my glitter and then tell those negative thoughts to listen to me, I tell them I believe in my heart I am a good person, full of personality and beauty. I tell that small voice “Today, I don’t have time to entertain your fear. Today I will be BOLD, Be STRONG, Be BRAVE.

Monya Bonbon

Embrace

Embrace

My friend is dealing with some really hard things in her life right now. It’ amazing to me how much the human body and soul can endure.  For me, going through a divorce or losing a child would be really hard.  While enjoying lunch with her I suddenly remembered something I’d learned along my journey, but I think I forgot. We all have trials and tribulations in our life, but looking from the outside in we often believe one of two things:

1. I could never go through that or

2. I’d probably handle that differently

Our inner self wants to tell us that we cannot do hard things–I never thought I could or would have to experience or suffer through cancer.  Now it is a part of my life and I’ve embraced all it has taught me not only about my own strength but also the courage of many warrior’s I’ve had the pleasure to meet and interact with.

I’ve embraced a combination of hard work and magical thinking. I now say “YES” Hard work matters but I will always leave room in my life for things to come.  I realize that along the way there will be even more to face hopefully I will look at it with a different perspective, with a heart wide open knowing in the end all will be even better than I could of imagined or planned for.

Monya Bonbon

 

Like a Tree

Like a Tree

I love this tree-a fews years ago I made a trip to St. Louis and this is what I saw.  Coming from Arizona we don’t get the chance to see this type of beauty-very rarely.  It reminded me of a tree my great grandmother had, she lived in California where the foliage is impeccably beautiful and probably taken for granted.

I’ve begun to live my life quite like a tree.  I understand now there are season’s of change and each one has it’s own individual worth.  I stopped fearing the leaves falling off, or the bare branches much like my head was once bald from the poison of chemo therapy it grew back.  I understand now that spring will come, that summer also will come–that this is all a part of my journey of living.

Monya Bonbon