Tag: Humor

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 Risks

The Risks

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.

Monya Bonbon

Dr. Lettieri Post Op

Dr. Lettieri Post Op

This is the REAL Dr. Lettieri–my Flip Phone Doctor is back-with his Converse, humor and beautiful blue eyes. After assessing my bruising and clotting, we have decided to wait a couple of weeks to see how it looks-we are not afraid of the blood clots traveling. My face feels like it did when I had Capsular Contracture in my breasts–extremely hard to the touch–but the bruising is almost gone. Dr. Lettieri said because of how much work he needed to do my face will take longer to heal. I will be undergoing a few more surgeries this year. My sinus reconstruction will be toward the end of the year, and Dr. Lettieri referred me to someone he said he would “allow to operate on his family’ If knew Dr. Lettieri like I do that is quite a compliment. He picked up  his handy dandy flip phone and contacted Dr. Howard’s office to send me asap. It’s nice to have a surgeon who is humble enough to understand there maybe another doctor (who was trained by Lettieri) he trusts and admires. I told him how nervous I was to see a different surgeon, he explained to me on the next surgery Dr. Lettieri will be in attendance, but not for the nasal reconstruction, to perform the rest of the facial reconstruction. (and possibly to check in on me) So three surgeries in one if if works out.–Can’t wait for that recovery;  if it wasn’t for my perfectionist surgeon he would have kicked my out and given up on my by now.

Dr. Lettieri is Italian and loves Canolis–so this is what I brought him today. The plate says “Be Happy Always”

As I waited for Dr. Lettieri, I realized they brought me into a surgical procedure room. This is the bright light he uses to see EVERYTHING–it’s pretty bright.

One time on my way to MIHS to visit with Dr. Lettieri, I watched 2 teens having full on sex under this tree. I honked; many times yelling at them to stop. I seriously would have given anything to have a hose and spray them down likes dogs in heat. I told Dr.Lettieri since it was happening just outside his window but off campus; his answer “Nothing surprises me here, I’ve seen it all” I shouldn’t have been surprised either; it did shock me. Today as I was leaving the Clinic I watched a van open and police officers escort a prisoner in an orange jump suit and shackled by his feet, secured with handcuffs on his arms.

I didn’t judge him, he was typical looking nothing to scare or offend me, in fact it made me want to show compassion for him, especially not knowing is story or the journey he has been on.

Yes I am definitely in a surgical room–what are they going to do to me today?

Bored……? Yes, soon Dr. Lettieri entered the room, stuck his large hands into my mouth to feel for the blood clot, and I’m pretty sure created another bruise. However, we are getting close to perfection he was very happy with the surgery outcome; still he has some follow up-but we need the swelling and bruising to go down, he thinks he can work on it at the same time Dr. Howard performs my nasal reconstruction; not crossing my fingers on that one. Dr. Lettieri hugged me and said “I will see you soon, we have been through a lot together but remember I’d let Dr. Howard work on me, you need to listen to me she’s good” I now have an appointment with her in the end of June–but l’m not having another surgery until I decide.

Monya Bonbon

 

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IKEA

IKEA

Is there anyone out there who despises IKEA more than me? I mean really what is all the hype over it, why are there lines of people waiting to get through the doors like everyday is BLACK Friday? Apparently I am missing something. We recently acquired some rental property we need to get furnished, so off we went bruised face and all to IKEA. On our way there I told Frenchie “I really don’t like this place, but for supplying kitchen, bathroom and essentials it’s perfect” I had to laugh at Frenchie on our way in we both had carts, if you’ve been to IKEA you know THE CARTS. I laughed and said “Oh you think this is bad, wait until you actually get inside–they slide across the floor and you have absolutely no control.”

This looks simple enough right?……..WRONG!! This is a diagram of the store outlay, however it is on different levels and remember you are pushing a cart with a mind of it’s own. It’s actually pretty funny to watch–oh and you do have the option of carrying a BIG yellow bag to put your items in, but when you are buying like we did for two rentals we both needed carts.

Don’t let the weight of that child fool you, the more weight you put into those carts the crazier it gets….just look at those shiny floors, wet those babies down and you’ve got a slip n slide like no other….for miles. My grandchildren would love that.

We bought these shelves and a bunk bed a few years ago…..they come in millions and I mean millions of parts. Good thing I have a son-in-law, Jeremy who put it together. There is no way on this green earth I will ever buy furniture or anything I have to ‘put together’ again from IKEA. It seriously took hours, than days before it was all done. I love my Frenchie but he is a very good business man, not a ‘put things together’ kinda guy.  After about an hour in the store, we both looked at each other and simultaneously said “I’m done” I said “Follow the arrows and the fabulous smell, then we will be out”

In conclusion we both decided we are too old for this store, I was exhausted by the time we left. Target is a much easier shop for me, and yes Frenchie smelled the cinnamon rolls, starred them up and down but walked away. Check out was a new experience for Frenchie-“Would you like a bag for an extra $1.29?” He looked at me and I immediately said “Why yes, yes we would in fact we would like to splurge on two” Then I separated everything out into both bags for both rentals, made it to the car and darted home.

Monya Bonbon

Dr. Lettieri (Update Post Op)

Dr. Lettieri (Update Post Op)

This morning Frenchie drove me to Mayo Clinic to have a little visit with Dr. Lettieri and Lindsay his resident (she’s super sweet) This is what I do while I wait, I sit in Dr. Lettieri’s chair and pretend to be him  until he walks in with his big smile and with no hesitation starred at my face, starts to examine-he didn’t even recognize I was sitting in THE CHAIR–the same one I’ve received amazingly bad and good news from many times, not necessarily from him but Dr.Kreymerman.

As you an see I still have some significant swelling and that dang hematoma–not my best look-but still grateful for an exceptional surgeon like Dr. Lettieri. He stuck his fingers in my mouth squeezed (that hurt) We sat and laughed, he asked Frenchie about business blah blah blah. Then made an appointment for me to get an ultra sound guided probe to look for liquid. So many surgeons have tried to help me and I adore them, especially Dr.Kreymerman who I am still friends with, but at this moment Dr. Lettieri is my hero–We discussed a sinus reconstruction…I told him since the chemo broke my septum I cannot breathe, I carry a Kleenex ALWAYS no matter what winter, spring, summer and fall…I need it to go away it is disrupting my life. I simply cannot live with it like this dripping and clogging. When I am pubic speaking my nose runs–then later I get a the comment “get that lady a Kleenex, that is disgusting” I am not living a quality life with this problem. More about that later.

Next stop my favorite Audrey–she’s been with me at Mayo since day one, cheering me on. She is a dear friend now with so much to offer the world. Her smile lights up any room and she always greets me with a sincere hug and kiss on the cheek.

After meeting with Audrey we headed to the next appointment on our itinerary–an ultra sound check for the hematoma. Frenchie and I got checked in and I told him I wanted to take a picture of this lit up sign. I proceeded to take the picture from down the hall and a security guard walked up to me and said “Um, you can’t take pictures in here” I replied “Since when?” She said “Since forever, it’s never been allowed, even if you were outside taking a picture we would ask for you to delete it.” I was so flabbergasted I ssid “How long have you worked here at Mayo Clinic?” she then looked at me and said with pride “I’ve been here a year” I looked her in the eye and said “Guess how long I’ve been here? …… 8 years, and I have pictures from every department I have ever been too” She very politely said “Well it’s against the rules” Just then I heard the registration and admittance lady call my name. I registered got my hospital hospitla band, showed the proof of insurance etc and asked the woman “Why am I not allowed to take pictures around here anymore?” She asked “Who told you that you couldn’t?” I pointed to the security guard, then the kind lady said “Unless it’s a new rule I don’t know, let me go check with my manager” She soon came back and said “Honey you can take pictures of anything you want, and if anyone gives you a problem tell them to see Jason”  I went and sat down to tell Frenchie about it and he went to the security guard and said “I am going to take a picture of my wife in front of that Mayo sign” She tried the same thing on him, but he quickly said “Go see Jason if you have a problem” …..well I got my picture and decided since we had a couple hours of down time I was going to take pictures of everything.

I love Mayo Clinic

Suddenly a flock of new baby 1st year residents came bubbly walking through ready for their lunch break. During this recovery I did some binge TV watching Grey’s Anatomy–totally reminded me of that.

I love this piano, especially when it is being played, but I also spy Frenchie taking a little nap. This is a perfect example of why I usually go so-lo to my appointments, it always makes me feel so bad when people have to sit around and wait for me. Frenchie is never bothered, but it does bother me when I know he could be out doing something fun on his one day off.

I’ll never forget Eric sitting in this room just after we were told my face would never be the same again….I wandered off with a pic line handing from my chest in a total fog…..

While ‘Code Blue’ was being called to the entrance of Mayo Clinic, Frenchie told me to stay away but I walked towards it..I needed to see what was going on.  What I saw was a person who dropped down on their way out. They worked very hard to keep this person alive, but right in front of me they took their last breath right here ⇡. The worst part….I was jealous, when I look back on that it was a dark and dreary time; I don’t feel like that any longer. I have 7 grandchildren now, and a chance to become better for the hand I have been dealt. Still when I walk through this area I always remember that day.

I decided to take a little walk while Frenchie took a little nap. There really is so much to see in this massive building.
Through these doors many lives are saved and many are lost. I’m still around and no security guard is going to tell me I cant take a picture of my second home.
I walked by this area and had to stand, stare and laugh. I used to meet Heather and Dr. Kreymerman quite often for lunch. One day I brought lunch from Paradise Bakery, text them and told them I was waiting whenever they were ready. Soon I received a text from Heather saying “Where are you, I can’t see you anywhere” My response “I’m outside, it’s beautiful let’s eat out here” When Dr. Kreymerman and Heather showed up they laughed at me, when I inquired why it was so funny. Dr. Kreymerman said “You know this area is for Attendings, you know doctors? Patients don’t eat here” Well, to say the least I didn’t move; we ate with the docs.
If you’ve ever been to Mayo Clinic finding a parking place is like finding a needle in a haystack. I parked here front and center many times while going through treatments. These are actually coveted parking places, well only to the radiated or chemo patient.

My beeper went off and I darted to wake up Frenchie and get admitted. When we walked in they called me immediately. The Technician took me back had me lay on a table and began asking questions “So why are you here? We have no notes from a doctor” I rolled my eyes “Do you know Dr. Lettieri?” “Nope never heard of him, what are we supposed to be doing today?” I explained about the hematoma….not a word out of nurse crabby face. She called in Dr. Patel I asked him “Do you know Dr. Lettieri?” “Well of course, I have his orders here. We are going to use an ultra sound guided way to find exactly where the hematoma is then we will extract the blood”  He asked me how much I liked Dr. Lettieri….right out of my mouth before he could even finish I said “Oh, I love him, he’s brilliant, I’d never let anyone work on me but him” …”So how many surgeries have you had with him?” …”Ummm, too many to count” Then he said something I won’t forget…”I like you, you have a great sense of humor, I’m sure Dr. Lettieri likes that about you” Then he said it was time to clean the area and insert the needle. I love when they say “This will only sting a little” After inserting the needle and having nothing come out, he said “Sorry I need a bigger needle and you are going to feel some pressure” Since I was facing the ultra sound screen and could see the needle being inserted I asked for my eyes to be covered until they were finished. End result…it felt like he was adding all his weight to the needle the pressure was so intense but I made it through. All of the hematoma could not be removed so unless they spread I will deal with them until I see Dr. L again.

As Eric and I walked out to the car, we wanted to stay out of the sun so we strolled through the new Cancer Center–I told Frenchie “we are walking straight through, not going to the third floor” He looked confused “The chemo lab, the smells…not today”
One of the original Mayo Clinic ambulance’s. I love the wording on the railing “Swiftly and Safely-Transporting Patients to Mayo Clinic” — how cool is this?

last picture on our way out through the cafeteria area–Next time a security guard tells me I can’t take pictures at Mayo Clinic…Go see Jason.

I will see Dr. Lettieri in a couple of weeks and when the swelling goes down and there is still a hematoma then Dr. Lettieri will make an incision in my lower cheek area and clean out the blood clotted area.

Monya Bonbon

 

 

 

 

 

 

 

Memorial Day 2018

Memorial Day 2018

I’m late posting this, but better late than never I love keeping these memories close. One day my grandchildren will look back on this blog and love reading about the silly things their Bonbon does.

Kaitlyn and Brian are in Utah visiting Brian’s family, Blake, Chloe and little Weslie are in Mexico and I get to play with Kayla, Jeremy, Recker, Ezra, Theodore, Haleigh, Scott and last but not least Ellis. Memorial Day is always fun in the pool, Bar-b-Que, games and fun. I was not feeling up to sitting by the pool today, but loved the grands loving on me. Zola is Haleigh and Scott’s dog–I’m not a dog person but she’s allowed at the house. 🙂 My face say’s everything.

Ezra came and laid next to me, he is the cutest little boy ever, he hugged me and said “I love you Bonbon…..I miss you too” with raspy lisp…how could anyone not love that?

And this…..this is Theodore, Theo or commonly known around here as Teddy. It’s hard to believe in just a couple of days we will have 3 two year old’s in the family…..and it is so fun, sometimes loud, but always fun. Theo has these BIG eyes, they pierce my heart, and when he smiles oh my…even better. I have truly been blessed with some amazing grandchildren.

Today was a good day with these sweeties.

Monya Bonbon

Just a Few Minutes in Town With Eric

Just a Few Minutes in Town With Eric





Eric and I are in Mexico for our monthly trip to check on our condos. The weather is beautiful and I am not looking forward to the heat that is sure to come in the next couple of months. We went to the fish market today, eric wanted to grill some shrimp for dinner. I did not want to go down to the market, I just wanted him to go and bring it back, but he really wanted me to ride with him. So off we go,and the whole time I’m thinking this is not going to be a quick trip, anyone who knows my husband knows he likes to talk to the locals down here. It’s quite funny to watch since he knows very little spanish, he tries to speak to them in French, and apparently thinks they are all deaf because he talks very loud when he speaks to them. I also knew that since we were going to buy something he was going to haggle with them and I hate that part. So here is how it went:

Eric (remember he’s real loud) Hola, amigo
Fredrico: Hola, how can I help you (he speaks english quite well)
Eric: what kind of deal are you going to give me on this shrimp?
Fredrico: Oh for you sir, very good deal, best in the market, special just for you
Eric: How much?
Fredrico: no worries, for you good deal….you buy from me I am the only honest one here on the street
Eric: Oh dont give me that….you all say the same thing…just tell me how much
Fredrico: how much you want to buy?
Eric: it depends on how much you are going to rip me off, I could buy more if you just give it to me for $3 a pound
Fredrico: (laughing outloud for everyone to hear) you wont find that price any where here in the market. I am the only one who has the american scale…(then he proceeds to show Eric his top of the line scale, takes some shrimp out and weighs it then sticks it on the “rip Off” mexican scale) see ev everyone else has this scale they all rip you off but not me I’m honest
Eric: you mean to tell me your friends next door here are ripping people off? (then eric gives his signature wave of the hand, as if to say get lost)
Fredirico runs after us saying please come back I will give you best price on the street this time…..
We got the shrimp for $3 a pound…..and 45 minutes later I was ready to go…..although I was highly entertained once again by my husband, I was so ready to get back to the condo!!!!

Surgery with Dr. Sal Lettieri

Surgery with Dr. Sal Lettieri

Eric and I waiting to be called back–we are now frequent
flyers here at Mayo–I think I should have a punch card with some
great reward after X amount of surgeries. When the registration
nurse knows you by name and nurses remember you by name
it’s a sign, you’ve overstayed your welcome.

June 24th 4:45am on our way to Mayo Clinic.  I talked Eric’s ear off trying to keep from taking any anxiety medication–hey, who knew…..it worked? While entering the Clinic I refused to look to the left, intentionally I jabbered to Eric about what a positive experience I was having with my home based business.  I wanted—-NO I actually needed to keep my head in a good place for at least a few more minutes while we got registered.
Just over a year ago was a dreaded day.  I’d been discharged from this same hospital with a disfigured face.  Hearing a doctor tell me “you need to get used to the new Monya, your face will never be the same” If I were to look to the left I would have a vivid remembrance of being wheeled out in a wheelchair and while waiting for Eric to bring the car around I watched a woman fall to the ground have a massive heart attach.  I listened as “code blue” echoed through the corridor. I watched as healthcare professionals did all they could do to revive her life.  They were unsuccessful, and I felt nothing but jealousy.  I wouldn’t necessarily say this was my lowest point of my life, but it ranked up in the top 5.
I’ve seen and felt tragedy, separation anxiety, depression,  heart ache, enormous unexplainable pain, loss of hearing, sight, smell, both breasts and all my hair. I’ve had temporary loss of feeling in my hands and feet. I still look back at all of this and know the positive out weighs the negative.  I’d do it all again, feel every ache and pain to know what I know now. What I know to be true is there is life after this earth life, it is beautiful and peaceful there is no pain, hurt or jealousy. It is a place like no other place you have been here on earth. I want to go there again, I will accept and take on all that happens to me here on earth to have that feeling for eternity.
After being registered Eric and I headed up to the 2nd floor for surgery.  When I got into the elevator
I couldn’t help but look at that spot, it was empty; too early in the morning for visitors. The rush of reality came flashing back of that day a year ago.  Eric asked if I was OK, I responded “yeah, sure I’m good” After checking in with surgery, they took me right back. I guess Dr. Lettieri is on time.  After vitals, question after question about allergies and when was the last time I ate or drank anything, I started to dose off.  My thought was “Read my chart, can’t you see how many times I’ve answered these questions? this is not my 1st rodeo” I saw Dr. Magtibay walk by and into the patients room across the hall, I suddenly sat up and wanted to talk to him.  The nurse continued with her questions, but I keep asking her to ask Dr. Magtibay come see me when he’s done…..she was looking at me like really?  I said to her I will answer all your questions, you can start my IV really fast if you promise me you’ll get Dr. Magtibay.  This time the IV only took a one time poke, that’s new it usually takes several pokes then they have to get a different, more efficient RN to poke me.
Soon Eric came back and just after that came Dr. Magtibay, I just love him.  He hugged me wanted to know about my surgery. I asked about his children and wife, then Dr. Lettieri came in.  I didn’t have to introduce them they knew each other. Dr. Magtibay excused himself, turned smiled at me and wished me blessings on a great outcome.

ready to go, Dr. Lettieri took this picture so I could see
the difference of my smile

Dr. Lettieri smiled at me and when I smiled back…..he said “do that again” not knowing what the heck he was doing I said “why?” he said “quit being difficult just do that again, that thing you just did with your face” I shook my head and said with a big smile “this?” he smiled big, he said “where’s Heather?” “I haven’t seen her yet” Dr. Lettieri went out to find her, but she was walking in at the same time. “do that again for Heather” I smiled as best I could they both in unison said “It’s working” Dr. Lettieri asked me to do that same thing over and over.  Apparently the surgery he did in February with the cross nerve was starting to show.  By their responses I could tell this was good news, he was happy.  Heather has been with me from my 1st diagnosis with breast cancer, and we have become great friends.  I can honestly say she has been a true to the end friend.  She watched as I suffered through chemo, radiation, expansions numerous surgeries she has assisted on for me.  She was there last year when I was rushed to the hospital in horrible pain, curled up in a fetal position losing all control of my bodily functions.  She stayed with my sisters and helped them to understand what was happening to me.  I love her like a sister, I really really love her.  She was happy for me, truly happy for this bit of HOPE I was finally feeling.

Dr. Lettieri, Me, and Heather
I love them both

After Dr. Lettieri gave his pre-op assessments on me he walked out and I yelled “I love you” he answered back “I love you too” I was rolled into the OR,  and off to my Happy Place in Paris. I seriously don’t remember a lot about recovery.  The only thing I can remember is saying I needed to go to the bathroom.  In the past I have not been able to have outpatient surgery because either the surgery required me to be observed for more than a few days, or my bladder didn’t work because I was under anesthetic for so long. The recovery nurse helped me into the bathroom, when she went to shut the door I said “no don’t shut the door” “honey, don’t you want some privacy?” “Heck no, I want you to hear the stream of pee in the toilet, and all those people in recovery are on drugs they won’t remember”  she laughed I immediately pee’d…..it was long and it was loud, and I was proud–she said “you didn’t take anytime at all”  She helped me back to bed and I slept for three days.  Some funny things that happened; that night Eric woke up and I wasn’t in the bed so he went looking for me, 1st the bathroom, then he went downstairs no Monya.  He said he walked upstairs again to check the bedrooms, but there I was asleep in the hall closet.  He got a picture of it but I’m not posting it.  The next morning I went to the bathroom, Eric said “a man is coming to fix our cable in the bedroom” I told him ok but I needed to lay in the bed if that was ok with him.  The doorbell rang, Eric brought the man into our room I could hear he and Eric talking. I was sitting on the ground with my head in the toilet throwing up.  Eric came in and said “are you ok? the guy will be done soon”  I don’t remember any answer I just remember continuing to throw up.  I guess I fell asleep sitting on the floor in front of the toilet with my head on the toilet seat. He got a laugh out of that one, and no I’m not posting the pictures.  I’m glad to be home, but never want to fall asleep on a toilet seat again.

The Price of Beauty

The Price of Beauty

I was recently at a training in Canada, as I religiously took notes I suddenly was struck with shock when I heard Mark (the trainer) tell a story about how much women pay for their beauty products.  I heard laughing from the audience, but I was in another world.  I was having an outer body experience. What is the price we pay for beauty?  I’m not talking about a monetary price, as Mark was humorously entertaining us with.
I had an ah ha moment, I wrote:   Mark said “believe me guys, there is a price for beauty….”
I immediately wrote down “For me, what I have learned about beauty from Nerium this past year is Priceless” My face is disfigured, it will never be the same.  I want that so badly, I want to look at someone and smile, smile BIG.  I want to show my teeth.  I can’t believe I took my smile for granted.  Just like I took my hair for granted, the feeling in breasts for granted, being able to run and train for granted, I could go on and on….. I simply took everything in life for granted.
I cannot honestly say any of this is understandable, nor has it been easy.  I may not always please people with my honesty and truthfulness, however I know the Lord has gotten me through these past few years.  I have been refined, not defined by Him who loves me just as I am.  In my quiet time, when I spend thinking and pondering over why so much in my life has been hard there have been times I’ve truly wanted to crawl in a hole and die–I’ve wondered if anyone would even miss me, lost sometimes in despair.
Then suddenly my heart is filled with more love and an overwhelming feeling of His arms around me, pulling me up through that dark and empty hole into the light again.
I lived for so long not caring about others, not caring even about where I was going or where I should be.  I now know my life was intentionally and most humbly prepared for me before I even came to earth.  His grace has gotten me through enormously unbelievable circumstances.  Because I know He has made promises to me if I am righteous and obedient I will continue trying to live as He wants me to.  I will share Hope and Faith with others, I know the Lord will use me, he will lead and guide me to people who are in need.  This life for me is no longer about beauty on the outside, I ask Him to help me not turn from pain and to give me strength and compassion to help others who are climbing an uphill battle.
We all want to feel beautiful, external beauty, I know this because I have been that person.  There are still glimpses I take in the mirror that horrify me.  When I am weak, I know I have to move forward, never go back, never give up.  I am putting all my faith in unseen strong hands that I have felt comfort me and pull me to a higher ground.  I love that feeling, knowing He is watching over me, He knows me, He feels my pain and He understands my journey on this earth is not quite over.
Physically I am tired, my body aches my heart is full and yet I want to fight because I know there are so many more miracles to come to others from Him through me.  I don’t feel comfortable sharing those sacred moments the Lord has so gracefully revealed to me I have more work to do before it is my time to go live with Him again.  He has lifted my burdens on so many occasions when I have wanted to give up.  When Sheldon died, one of those special moments came.  I truly miss him, and visit his graveside often. I’m not sure why, I haven’t visited anyone’s grave as much as his but I feel a peace there. I will never forget him telling me I looked beautiful when I was bald.  Eric tells me I’m beautiful everyday, he is so kind in that way and I appreciate it so much, but the day Sheldon said those words to me, it meant something different.  He stood there pale faced and bald himself and yet for some reason those words penetrated my heart like no one else ever has. Maybe because I trusted he knew how I was feeling, not just using “words” to succor the needy.
Every bit of the worlds definition of physical beauty has been taken from me.  So yes, there is a price to pay for physical beauty, but for me what I have learned about pure unconditional love and beauty in His eyes is priceless.

I’m trying ….

I’m trying ….

I have missed out on a few blog posts so today I will probably post 3.  First I went to Cleveland Clinic had my surgery with Doctor Gastman then flew home with Eric to recover.  I’m getting really good at this.  I do not like the pain medicine, Eric gets upset if I don’t take it, but I try to muddle my way through without using it.

I received an email message from one of my physicians who reads this blog, so this is for him…. “You made a mistake on your blog, that was your 21st surgery in less than 5 years” “Well excuse me for the miss count, btw your nosey” “No, just want you to be exact” so there you have it, yes I have nosey physicians.  It’s a good thing I love him enough to care that he was kind enough to correct me, and that I never say anything on this blog I wouldn’t be proud for them to read.

I want to add this little tender mercy to this blog post because it is another one that truly took me by surprise.  I have been involved with a company I feel the Lord placed in my lap a year ago for a reason, He knows how much each of us can handle, and knowing what was about to make a life altering change to my life, He knew I needed to be with people and circumstances that could bless my life, and it has in such a precious way.  I have made lifelong friends, who never knew me before my paralysis or cancer diagnosis.  Most don’t know my story.

I recently was invited to listen to a conference call by a woman who I had already admired, for her down to earth, funny, humble way of telling the story of how she and her sweet husband have gotten to where they are today.  Like always I was sitting on my bed with my phone on conference mode with my notepad ready to take notes, learn something that may also help me in my venture.  I was not prepared for the emotion I would feel when I listened in.  So many who have followed my story know I use the word HOPE so much, I have studied it, pondered it, lived it and tried to wrap myself up in the warmth of that word.  Mariel began to speak with her team, (everyone on the call is muted) that’s a good thing because it was not a minute or two into the call when I began to blubber like a baby.  It was as if she was speaking to me directly. (this is not the case she had about 800 people on that call)  I am not going to go into all my notes, mostly because I stopped taking them at this point.  She was directly delivering her message to me.  Graceful and gently she spoke of HOPE.  Giving HOPE to others during a time in life when so many just need to know there are people in the world who care, who want to help make a difference. It’s been 6 month’s that I have dedicated myself to doing something kind for someone every single day, I have been successful doing this, and it has changed my life. It doesn’t take away my own needs and realities, but it has helped me to become a better person, to learn that when I fall I can be lifted up and reminded of my potential.  I’ve been reminded once again time after time as I’m guided to people daily that I have so much to work on, so much to learn but by taking the hand of others like Mariel and Frank I can be lead and guided with thoughts of goodness and mercy, and do it with humility and grace.

I had a few days off for recovery after surgery, but started back to work last week.  I love my job at USAirways.  I really had a breakthrough last week while working.  Probably not the place I thought this would happen, but anymore I am never surprised at what, where or who touches my life in a significant way.

I was taking a reservation for a man, just doing my job when out of no where he asked me if I was OK.  Not knowing exactly what he meant I asked “Yes I’m OK, does it seem I am not doing my job, or have I offended you?” “Oh heavens no, just the opposite you are lovely to talk to and today I feel grateful it was you who answered the phone” a little stunned I thanked him and finished up his reservation, when I asked if there was anything else I could do to help him he said “Yes, you can” thinking he was going to either change the reservation, have me send him to rental cars or add his dividend miles number, you can imagine my surprise when this is what he said “Did you recently have a stroke? I don’t mean to be nosey but your voice sounds a little staggered” for the first time I was finally able to hear the truth from someone, a stranger and for the 1st time a light went off in my head I replied “No sir, I didn’t have a stroke but I do have partial facial paralysis and sometimes it is difficult to speak clearly, I’m sorry if you had a hard time with me today” I felt this sweet peace come over me, I am healing, from the inside out.

Facial paralysis has been by far the most challenging misfortunate obstacle I have had to come to grips with.  I’ve felt so many times that I just can’t do this anymore, begging for relief, for a complete physical healing.  I have definitely felt broken, alone and misunderstood. To finally say out loud to a perfect stranger “I have partial facial paralysis” may seem so insignificant to other people, but for me it was HUGE.  My physician’s have been perfectly honest with me.  Right now, there is not much  hope for a full recovery without more surgery, which I was told from the beginning.  I like to think I want to hear the full truth, the bottom line, then I can deal with it.  Boy, was I surprised at how much I didn’t comprehend my own understanding of what difficult was.

I have so many people say “…but you’re beautiful”  for some reason that “….but” hesitation has penetrated my heart too many times.  I know there is not one person out there that has said those words to me who is comfortable saying it, but I’ve come to discern they love me and really just don’t know what to say, and that is OK, I don’t know what to say either.  The absolute truth is, my soul is trying to heal, and it will take some time for me to be ready to accept this new life I have been offered.