As the American writer Richard Bach said, “A soulmate is someone who has locks that fit our keys, and keys to fit our locks. When we feel safe enough to open the locks, our truest selves step out and we can be completely and honestly who…
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, 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.
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
I spent 5 days in Las Vegas, which is probably my least favorite place to be. I was there for a conference on how to grow my network marketing business through social media. While I found the event to be highly effective and I learned a crap load of information about marketing, I seriously hated walking through the smoke filled casino just to get a bite to eat. I will never understand the attraction people have with gambling their money away. Some of these people stay up all night long, just hoping for that BIG win only to walk away empty handed, shattered and depressed.
As I walked through one morning I wondered “Did these people get any sleep at all? Do they have any money left? Where are their families?” I’m certainly not a ‘debbie downer’ I like to have fun, but not with my money or my future. There is a lot of money in the world, plenty for everyone but working for it gives a sense of accomplishment and joy. I could not imagine sitting hour after hour putting money into these slot machines, money they probably worked hard for.
This is a danger zone…..with gambling addiction rising, people losing their homes and families this is not a life I would choose. Boy was I grateful to get home to my safe haven, quiet and calm without the constant ringing and clanking of change dropping into the machine. I decided I’m all about the sure thing, like a new pair of shoes….yes, I will take my money and buy something tangible and useful.
Las Vegas can be fun, but for me one day is enough and I want to walk away with some value being taken from it. If I spent on shoes what some lose in those machines I could own a shoe store!!! Bottom line, what I learned? I love my life and wouldn’t trade any of it, not even for a billion dollars.
I remember taking this picture in 2015, just a year after being diagnosed with facial paralysis. Frenchie took me on a trip between surgeries; funny I can’t remember where we were. We’ve been on so many trips together trying hard to mark everything off of my bucket list. I do recall looking out of the window far above the clouds and seeing this breath-taking view; it was at this moment I realized I have taken so much for granted; our world is beautiful so many nooks and crannies we will never explore, but just knowing they are out there gives me hope and a sense of a spirit much larger than my soul can imagine.
There is so much to see in this beautiful world of ours; but my favorite place to be is with my family, there is no other joy and peace I feel watching my children grow into happy, healthy adults who cherish one another and understand the importance of time, time together making memories to last for eternity.
I started back to work yesterday, it was physically painful however I’ll take the pain over depression any day any time. There is something about being through so many surgeries, procedures, pokes and tests that make me wonder once again what I am supposed to be learning. I am well aware of all my weaknesses-I say damn and hell every once in a while, I judge people when I should be reaching out to them, I’m simply not perfect and not ready to die. I try daily to be better than I was the day before and so often fail in my attempt; but one thing I never do is leave my Heavenly Father out of my daily routine. He guides me and helps me to become the woman I strive to be.
This was me on May 1st, 2014 I thought I was so happy, look at my smile, my beautiful teeth. Oh how I loved to smile. I’d finished chemo, radiation and several surgeries and was well on my way to being ‘ok’ with living with cancer. I see some wrinkles, but mostly I see joy in my eyes for the happiness I felt being alive. Then life came to a screeching halt and I was once again faced with an unfortunate life altering transfiguration.
On May 15, 2014 this was me lying in the Mayo Clinic hospital fighting for my life. There was a sadness I had never experienced. My life would never be the same, my face would show the sadness and sorrow. There was simply no one on earth who could possibly understand what it felt like to hear my surgeon tell me “I’m sorry to tell you, your face will never be the same again, you need to get used to the new you”
That task seemed daunting and unachievable I didn’t know how I could face a world where physical beauty had become the main focus for so many people. I never realized I was one of those people, I was vain I wanted my smile back I wanted to be normal, heck I’d even take typical. With help from Dr.Lettieri teaching me grace comes from within, I have been able to somewhat come to accept who I am, what I am meant to do here on earth; and it is definitely not to be a fashion model. My Heavenly Father has so much more in store for me and I’ve come to understand true authenticity and absolute beauty comes from knowing who you are and where you are going, it comes from first loving yourself no matter the circumstances life throws at us. It certainly sounds easier than it actually is to do, I have spent 3 years working on myself, studying and trying to teach our youth to love their life. If all of us could see ourselves through our Father in Heaven’s eyes I think we would be surprised to know what He sees in each of us; I believe He knows my heart, He feels my pain but mostly He understands I am trying everyday to become a worthy woman of infinite worth in His eyes.
This was me just a few days ago at Shane Wright’s luncheon after his funeral; I love this picture with Archer, still bruised and swollen looking at this picture I realize my grandchildren will never know the face or person I used to be they only know Bonbon exactly how I am today, and they love me unconditionally as I do them. The woman in this picture has come a long way with still so much to learn about herself and other’s. There is no better Hope than knowing I have many years to learn and teach other’s how to cope with unforeseen circumstances and to accept to love themselves in away no one on earth can understand. I am truly blessed and Amazed at the grace He so fully offers all of us.