Trying to Find Grace Within Faith In Special Needs Motherhood

July 8, 2019

I know that I have faith in God because I believe he is here without a shadow of a doubt.

Faith is knowing God is real, like you know that the wind is real. You cannot see the wind but you can always feel it. 
You will never be able to see faith but, you will always be able to feel it.

Grace is peace. Grace is acceptance. 
How do you find grace within faith when your child is sick? 
I’ve been searching for grace for two years now, and every time I think I have found it death comes walking in the door like a holder to even the smallest amount I think I may have found.

Grace is getting to sleep thru the night without the fear of death taking my toddler in the middle of the night without me ever knowing.

The minute I watched my son stop breathing was when I undoubtedly fell from grace without loosing faith for even a second.

I’ve always continued to pray, I’ve never stopped believing that God is here. For so long I have gracefully let my anger towards him cascade into a volcano that I would cover up little by little every time it started to erupt.

Each time we landed inside of a PICU on a ventilator with every beep of low oxygen levels a little bit of grace would flood out of my body thru tears like prayers to God begging him to save my son and take me instead.

Faith is what kept me going, but grace is what gave me the will to fight for my son when he was to tired to breathe.

So many days I still have faith but, i’m loosing grace faster then I can get more, I have fought so much, and for so long that I now just long for peace.

I long for the peaceful nights full of hugs and kisses without the beeps and swooshes of the oxygen in the background.

I long for the nights of big dinners and fun baths without the alarm of another gtube feeding that must be done no matter the time of the night.

Grace is slowly leaving me with every diagnosis added on to his list of medical problems.

I believe that every mother tries to wipe away the tears in secret as she stands strong in front of her family and friends.

The oh so common words of “it could have been worse” will echo inside the mind of a mother as she wonders if she can gracefully tell someone that she is falling apart thru faith.

Grace is being able to have peace and dignity in admitting “that you are not okay, that you are falling apart as your child fights to live.”

To have enough grace to do this, you must have more faith that God is here, but in that time, in that moment you will be searching for more faith then you ever have in your life.

When the worst of the worst is happening and you are laying in bed imagining what you will do if you have to bury your beautiful child your faith is lost, and once you loose faith grace is then gone with no sight.

It is a thought most mothers never imagine. Maybe for a second, but for me, for the mothers of special needs children it is a fear that comes to mind with every single PICU stay, with every fever, cold, or injury they wonder if this will in fact be the last.

We have all spent every day trying to be the mother that God says we are supposed to be. When every few months something happens, and death comes knocking on our door like he is holding a sign with the way to the funeral home.

In a moment where there is nothing worse then all of the feelings of guilt, grief, and regret that are going on inside of my mind as the mother who couldn’t protect her child no matter how hard she tried.

These feelings, these fight or flight emotions have never gone away, and we continue to live in this constant state of fight or flight. Only trying to hang on to as much faith as possible while slowly trying to find any amount of grace.

Over time I have put up a guard to my heart, because every time I feel as though my child will be okay God sends me another test of faith taking all of the grace I had earned with it. It feels as though God is tricking me, like this test is no longer a test, and he is only preparing me for the inevitable.

Some days I wonder am I only gathering grace to give it all back on the day I just can’t save him? Is my faith only preparing to still believe that God is there on the day that he decides to bring my child home?

Everyday I am afraid to love my own child, because if he dies I don’t know how I will come back from that. If God takes him, I don’t know if I could ever have faith again.

If my child dies I am afraid I may have my final fall from grace. So I continue to have faith and search for grace, in hopes that I gather enough that this never happens.

I suppose it seems that all I know is that today, tomorrow, and everyday I’ll continue to love him as long as I can. As long as he is here I’ll continue to have faith and search for as much grace as I can in hopes that one day I will find peace inside of grace.

I don’t know how long I’ll be searching for, but everyday I’m continue to find just a little bit of grace, and continue to work on having a little bit more faith.

With faith comes grace, and I’ll simply keep searching for that for as long as I can with a cup of coffee in my hand.

For as long as my child is on this earth, i’ll love him as much as I can, i’ll continue to fight as much I can, and I’ll pray every night that I am never to late.

I am his mother, his only protector.

“With faith i’ll find grace, and thru both of those, I know that we will both be okay.”

Embracing Guilt, Grief, & Regret as a Rite of Passage Into Special Needs Motherhood

June 20, 2019

Guilt is the lump in your throat from holding back the tears, as you tell your self you have to be strong, no matter what.
Guilt is standing in the hospital parking lot at 2 am screaming at God to save your child over and over until you finally beg him to just take you instead.
Grief is lying to your child’s doctor when they ask you if you are okay.
Grief is your heart sinking into your stomach as you hold your child just a little tighter as the doctor gives them yet another diagnosis.
Regret is replaying the same memory over and over wishing you had just fought a little harder, protected them a little better, held them a little longer.
Regret is the cup of coffee you’ve remade 10 times, because you were up all night researching treatments while your child slept on your chest, just so you knew they were breathing.

Guilt.

Standing in the parking lot of the hospital screaming at God over & over begging him to listen.

“I can’t do this, I’m breaking and falling apart. I’m trying so hard to be strong, but the tears are falling faster than I catch them, and the clouds that were once my thoughts are just getting darker and darker. 
My days are getting longer, and my nights are getting shorter.
I’m doing everything right and my baby is NOT GETTING BETTER!”

I’d wipe my tears, look at the sky, and walk back inside. 
Strong was what I was going to be, no one was ever going to know I was slowly falling apart.

Every time we got a new diagnosis.
Every time we slept in a hospital. 
Every time sat in an ER at 3 am
Every time another milestone wasn’t met.
Every time I argued with a doctor or nurse to just do something.
Every time I tried to form the words, “I’m not okay.”

Guilt would tap me on the shoulder, just to remind me the he was always with me.

Guilt consumed me, fueled me, and kept me going in the darkest parts of my child’s life.

Guilt made sure, I told no one that I believed; I failed my child!

I am my child’s protector.
I am my child’s security. 
I am everything my child needs.

& I couldn’t help my child….

I failed my child….

I was not allowed to show weakness. 
I did not deserve to show weakness.
My child was fighting to live and to me, it was because I failed him.

I failed him.

Grief.

I was the keeper of the key to the plan to “fix” my child and I was going to prove to me, God, and the whole damn world that he was going to get better.
Failure was not an option & guilt was now long gone.

Until, I found grief….

“Grief rolls in like a black cloud of thunder on a beautiful day at the beach. One minute your standing in the water watching the waves splash the shore, and the next your drowning in the sea, with no way to get your head above water.”

One minute you have a plan to save the world, to regain the child God promised you when you saw those two pink lines. 
The next your sitting on the floor locked in your closet hiding from the world because the brick sitting on your chest has chained itself to your heart and you can’t see past the darkness of your thoughts.

Grief is like the wave of a tsunami, crashing into your heart, every time you come to terms with another set back.

Grief never truly goes away.

Grief moves into the lonely corner of your room, only coming out to remind you of everything your child won’t get to experience no matter how many plans you successfully set into action.

Regret.

As I come to accept that there are just certain things my child is always going to struggle with, I often find myself second guessing every single decision I have made in the last five years of my life.

Regret is ever evolving.

Regret is isolating.

Regret is the voice I hear in the shower telling me, I should have taken my child to the doctor sooner.

Regret is the voice I hear in my thoughts at 3 am telling me to watch my child sleep for just a little longer, when my eyes will barely stay open and my body is begging me to please just sleep.

Regret is quick.
It shows up 3 seconds after you make any single decision and makes you replay it over and over, consuming your mind.

Regret is when I tell my child they can eat cake for breakfast and watch TV all day.
Regret is standing next to me reminding me that something could happen at any minute.

Embracing Guilt. Grief. & Regret.

The day the I looked death in the eye for the second time and begged him not to take my child as he laid in a PICU on a ventilator on a 2:1 nurse ratio was the day;

“I fell from grace & lost all faith.”

I walked down a path of darkness consumed with guilt, grief, & regret every day.

I was done trying. I was done caring.

Anger coursed thru my body; burying any trace of any other emotion as I screamed at every single doctor, nurse, or person who dared to say anything at all to me.

” I loved you at your darkest” — Romans 5:8

Every morning I wake up just a little earlier than my kids. 
Every morning I sit outside, drink my coffee, and talk to God. 
Every morning I embrace the thoughts of guilt, grief, and regret.
Every morning I take the thoughts I can handle and I give the rest to God. 
Every day my children show me to how to be strong in the face of defeat.

Embracing guilt, grief, and regret; 
has given me the peace to see the sun,
the courage to lift my head out of the water, 
and the strength to swim to shore.

“Be strong and courageous! Do not be afraid or discouraged for the Lord, your God, is with you where ever you go” — Joshua 1:9

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Peace Does Not Mean Letting Go: Why South Mississippi Smiles Will Always Be What Started Advocating For Elijah’s Voice

June 11, 2019

Ever so often I find myself waking up well before the sun decides it’s time to start the new day.
This used to make me madder than the pain of child birth, because the need for sleep was more than just rest.
It was my escape from the world and everything that came with it, and I was willing to get to the bottom of the bottle in an hour or less if that mean’t I was going to get to the state of sleep that I really wanted.

I now believe wholeheartedly that it’s God giving me a warning that i’m going to need to get my ass up and deal with some shit.
I suppose you could argue that it’s not but with faith comes believing, and I choose to believe.
Whatever keeps you from finding the bottom of a bottle right?
Because right now, the bottom of a bottle, well, it seems quite nice.

Most times I get up and tell God, not today yo, not today.
I’m gonna need you to take that on back because I just can’t handle that today, most days he does, until he finds a way to throw it back at you and say okay, it’s time for you to deal with this.
That my friend, is what you would call, “a test of faith” and yes, God will do that, he will test you, and it’s up to you how you respond.

Last night I received a message.
A message from a person that I genuinely trusted.
A person that I defended fiercely.
A person that I won’t name, because I believe that your word is all you really have so cherish it, and always stay true to it.

“I’m so glad you have found peace in the situation!”

The entire message was a blur other than those 10 words.
My mind repeated them like the memory of the day where it all started.

The day I never signed consent.

The day I never signed consent for the pain my child would endure.
The day I never signed consent for the tears my child would stain on my shirt as he screamed it hurts, with no end in sight.
The day I never signed consent for the massive swelling of his gums that would cause him to loose 2 pounds in 3 days from lack of nutrients.
The day I never signed consent for my child’s autism to literally be used against him to leave him in massive pain.
The day I never signed consent for my child’s autism to be the pure reasoning for deciding to put 14 crowns on my tiny, innocent, beautiful 3 year old

Peace.

Peace comes from your soul, peace comes from pureness, from taking a deep breath in and taking one out and believing in your soul that the outcome of your situation is okay with you.

Peace is not acceptance.

Acceptance is knowing that though the outcome is not what you wanted, you have accepted that it is what it is and that you need to move on.

With peace comes Grace, and God knows I surely haven’t found that.

I may have faith, but Grace, I might just be waiting for that on my lonely dying day.

The only day I will find peace, will be the day South Mississippi Smiles decides to apologize.
Though I have decided to sprinkle a little bit of the Grace I have found and silently part from the venture of letting every mama and child know what they did to my little firecracker of a 3 year old, I will never find Peace in what they did.

Finding peace would mean that I don’t sit up at night and wonder if I could drink just one glass of wine without drinking the whole bottle to just forget for a second that I failed him.

That I failed my child.
That I failed to protect my child.
That I failed to advocate for my child.
That I failed to stop someone from hurting my child.

I am awful at many things, I fail at many things but, I have learned how to advocate.
See, I am the queen of advocating, I can tell you the law like the back of my hand.
My children’s doctor knows who I am and goes that extra mile because he knows I will say something.
My child’s hospital knows who I am and if I say no they step back, with zero questioning.

Advocating is my identity, someone once told me to take the bitch out of my pocket and once I learned how to do that, I became the mother the medical community hates, and I freaking owned that shit.

Yet, I still failed him.

Of every blog post I have ever written on this site,
“An Open Letter to the Dentist That Tried To Steal Elijah’s Voice”
is still the most popular post, it has been viewed over 3,000 times people search for it on google.

I suppose they could say the “reason” they won’t publicly apologize is because it violates HIPAA, and they violated HIPAA.
Yes, they even sent me a letter admitting they violated HIPAA, not sure what good that did.

Please though, rest assured they have not privately apologized nor do I believe they ever will.

I said, I’d never speak badly about them again, and I don’t believe this is, but if writing this out keeps me from finding moscato again, believe it, I’ll write everyday.

If you have followed us from the beginning, here is your update.
If you are new, now you know why we are called “Advocating for Elijah’s Voice”

In the meantime I’ll keep on trying to find Grace, while believing in Faith to be sober for just another day.

-Steph

If you would like to read the open letter post the link is below.
https://advocatingforelijahsvoice.com/2019/03/16/an-open-letter-to-south-mississippi-smiles/

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Welcome to Pediatric Healthcare: Where the Fear of Losing your Child is Stronger then your Desire to Advocate

June 10, 2019


“I’ve been a nurse for 35 years and I can tell you right now, your son is not in respiratory distress. You need to sit down, and let me do my job” — the floor nurse taking care of my son

He was moved to PICU an hour later

“A high heart rate is normal in laryngomalacia babies — a floor nurse

His temp was over 103F she never bothered to check.

“He looks to be breathing pretty comfortably to me” — Night time 2nd year resident

He was moved to PICU two hours later and put on high flow oxygen

” I just want to make sure you know how to take care of him, so we want you to room in with him while we watch you” – His PICU doctor

He was back in the same hospital 2 days later in respiratory distress after I took him home because the doctor thought I was lying. He wound up getting a Gtube, and was sent home on full time oxygen.

“It’s not that bad of a case of pneumonia can you just calm down and let the doctors decide what to do” – a floor nurse

He would wind up in PICU that night because the resident never ordered the antibiotic, and he got dehydrated from not receiving any fluids all day after his nurse let his IV blow and never changed it.

“If you leave that hospital I will call DHS on you!” — His pediatrician

He was released the next day after demanding infectious disease come look at him. They admitted he was not as sick as they thought he was and did not need IV antibiotics.

“Maybe you should stop complaing about his crying and just be thankful he is even alive” — the surgical resident

They sedated him 4 hours later because they tried everything from morphine, versed, benadryl, and even methadone, he never stopped screaming for over 24 hours.

I could go on and on about the things I have been told by both doctors and nurses about my children’s healthcare. It’s a problem everyone knows about, that no one will talk about.

If you were to walk into a special needs facebook group what you would find is the overwhelming fear and anxiety that raises the moment a parent asks what will happen if they stand up to their child’s doctor.

When we live in a world where a parents fear of DHS is stronger than their desire to advocate for their child, then something needs to be done.

The first time I was bullied by a doctor I was told by another special needs mother that I was going to need to learn to take the bitch out of my pocket, to stand up, and to stop being scared.

That did not happen for me over night, and I called my mother many times who is the equivalent of Madea, I shit you not, she got my son transfered to a different hospital in two hours, when they had ignored my request for that repeatedly.

The reality, is that this is happening everywhere, to any parent that doesn’t agree with their child’s treatment, or any parent that doesn’t think their child’s doctor is doing enough.

I’m not sure there is an easy way to fix it, but I know the first step has to start with awareness.

Pediatric healthcare shouldn’t be where doctor’s are always right, nurses judge, and parental concerns are ignored. Yet, here we are in 2019 treating mothers like it’s the 1950’s and they just need to sit down and shut up.

Parents everyday are spending thousands of dollars fighting DHS for their child back after a doctor called on them, for something that was not true.

I have been threatened with DHS two times in my children’s life, and I simply googled the phone number and handed it to them, and let them know as soon as they called I’d be retaining a lawyer.

Not surprisingly they never called, because I wasn’t scared, I didn’t backdown.

When doctor’s, nurses, and hospital’s are using DHS as a scare tactic to bully parents into doing what they want them to do that is a huge issue.

Pediatric Healthcare is by all means the perfect profession for the Egotistical person and parents are paying the price for it.

but hey,

Welcome to Pediatric Healthcare: Where doctor’s are always right, nurses judge, and parental concerns are ignored.

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Simply scroll down, hit the share button & share this article with the hashtag #Iwillnotsitdownandshutup

Be sure to add something a doctor or nurse told you to make you sit down and shut up!

Together we CAN change pediatric healthcare and show the world the kind of kick ass mothers & women we are!

Help us today & share this with the hashtag #Iwillnotsitdownandshutup

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You laid your head on my chest, today.

I sat there with you for what must have been an eternity.

Just soaking up all of you, I rubbed your head, rubbed your back, told you I loved you over and over.

 I listened to your heart beating, knowing that you could feel mine, knowing that being that close to me, brought you more comfort than anything else in this world.

I held you longer today, I hugged you tighter today, and I let you sleep a little longer today.

You are three, and you are beautiful, you are amazing and courageous.

I am your mother, your best friend, I am the one who knows everything about you.

I know that you hate hot food, and you hate the feel of jeans.

I know that bananas are your favorite, and that slime totally grosses your silly little mind out.

You are three, and you have taught me more in your three years of life, than I have learned in my 26 years of existence.

From you I have learned the value of patience, that your voice goes a long way, and that sometimes its better to just sit and be together than it is to say anything at all.

From you I have learned, the true meaning of love, you have shown me innocence thru a filter of a beautiful child, that I have never seen before.

Thru you I have learned the meaning of braveness.

Your life started in a NICU and you powered your way thru it, like you were the mighty king and nothing could hold you back.

Your love for fire trucks, and garbage trucks, anything with a siren, could make anyone fall in love with you.

Your smile, oh your beautiful smile, could light up any room, with even the saddest person in it.

You do not say very much, but your warmth, could touch anyone.

You my child, have saved me.

I’ve always believed that I had to protect you, to guide you, to make sure nothing happened to you.

God knew that you would save me, that you would change me.

God knew that becoming your mother, would be the single most life altering thing in my life.

For you are loved, you are wanted, you are cared for, and you are amazing. You saved me in only three years, and I will spend my life, being everything, you need me to be, I will make sure you are always loved, that you are always happy, and always treated right.

I am your mother, your protector, your safe haven.

My love for you knows no boundaries, my love for you is ever lasting, and always unconditional!

Sweet dreams my son, sweet dreams my beautiful, beautiful son.

Sleep here a little longer, lay your head on my chest just a little longer, because you have a beautiful world to chase.

You have many things to accomplish, so for right now;

Lay your head here just a little longer!

An Open Letter to the Dentist at South MS Smiles Who tried to take Elijah’s Voice

March 16, 2019

I wonder if any of you have ever taken care of a child with autism, and by that I do not mean, as a patient!

I wonder if you have ever been the sole caregiver to a child with autism. Because if you had, I believe you would not have let me walk my child into that room, let me hold him while you put him to sleep, tell him everything was going to be okay, that you were only fixing his four front teeth, and then put crowns on fourteen of his tiny teeth all at one time!

If you had truly cared for a child with autism, you would have known that the best thing you can do is ask their mother!

At what point did you decide that it was okay for you to go from FOUR teeth to FOURTEEN teeth, without my consent? Did you really think that you blaming his autism would make this okay?

Had you asked me, had you done what you are legally and ethically required to do, and tried to get my consent I would have told you NO!

Instead, you took it upon yourself to change my beautiful, creative, imaginative three year old childs entire mouth at one time, and then, blame it on autism.

When he screamed it hurts for hours, I called and called and you simply responded with, “he isn’t in pain, he just has autism, he is overwhelmed!”

I am not sure, how all of your years of dental training never told you that a person’s mouth, teeth, tongue, etc. are one of the BIGGEST sensory parts of the entire human body.

So much that humans do, they must use their mouth for. One very important thing would be eating, but even more importantly SPEAKING.

My beautiful child, my creative, spunky, stubborn, yet amazing child, has autism, autism does NOT have him.

If I could stand in front of the world and ask every one of you one simple question, I would ask you,

“Since when did autism become an excuse to treat a child like they were less than human, like they do not deserve the same rights as everyone else?”

Notice that I did not call out just a single dentist, I have grouped you all into one entity, there is a soul reason for that. There are many people I could call out, there are many people within your soulless excuse of a company that I could call out for what they did to MY child, MY child, should I say that again.

 I am not sure a single person in South Mississippi Smiles understands that or acknowledges that one very important statement. All of you have hid behind your rose-colored glasses and acted like you just do not see me anymore. You have quit responding to the numerous tags, to the numerous reviews, you have quit using social media all together. To anyone reading this, that works there and has not spoken up, YOU ARE JUST AS GUILTY as the people that were there on that day!

Not only did you take my child’s autism, use it against him to do additional work on his mouth, you also took away my basic right as his mother!

You see, I am his protector, his advocator, his safe haven! I am the person that knows his wants, his needs, his likes, his dislikes; and I AM THE ONE WHO KNOWS what you did to him!

I am the one who KNOWS what you stole from him, what you stole from me!

My child, my son, Elijah, worked so hard to get where he was, he worked so hard to speak, to drink, to eat, and in two hours, you stole all of that from him, without even thinking, without even caring!

Because a DOLLAR SIGN was more important to you, than my son.

I know right now, you are just hiding out, your waiting patiently for me to give up, to stop advocating.

I just want you to know that I will never stop, I will never give up. The thing you are mis calculating is that I am the most determined mother you will ever meet, I have already lost family, lost friends, I have already been called names, and been judged.

All of that, just makes me stronger, it makes me MORE DETERMINED to make sure that you WILL take accountability!

I will keep shouting this at the top of my lungs to as many people as I possibly can, until you understand that placing FOURTEEN crowns at one time, without MY consent is not okay!

I will keep advocating until you understand that hiding behind autism, to make a dollar, and traumatize a three-year-old is NOT okay!

I do hope you like my response to your lovely cease and desist letter, I would be more than glad to stand in front of a judge, show him all my proof, tell him what the dental board has said and more.

I have been patiently waiting for you to reach out and make things right, I’m not sure if you know, but that post you want gone so badly has been viewed more than 41,000 times! Its only going to keep getting bigger!

There are many things that I am not sure how to accomplish, but advocating, well that’s something I know how to do very well!

I hope we will talk soon!

Sincerely,

One pissed off mother!

We learned today that the dental board has dismissed our case, we know this is because the dental board is covering up for South Mississippi Smiles, there have been multiple news articles trying to shed light on what the dental board is doing.

Please help us by sharing this article and signing our petition at
http://chng.it/Zs5KGqcj2p

Your support means the world to us!

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An Open Letter to Jay Hughes

July 9, 2019

Mr.Hughes,

It is no secret that I am the mother to the child who was hurt by South Mississippi Smiles. It is no secret that I openly advocate for children in Mississippi.

In my ambitions to do so I have reached out to many politicians. I have spoken to many house representatives inside of this great state of Mississippi, many of them simply ignoring me or mocking the special needs community of children all together.

When I reached out to you what I found was a man that was true to everything he has said. I started to look over your values and the first thing I read was transparency.

Every single politician has that same word in their own campaign. Everyone says they want to be transparent that they are tired of the “Good ole boys club.” They are lying, but when you say you are transparent you mean it!

I spoke with you and told you everything I could about what South Mississippi Smiles had done along with the dental boards role in it, your response was profound in not what you said, but your actions behind it.

You simply said, “I am going to do everything I can to help you, I give you my word”

In the beginning I did not believe you. I had been ignored by so many politicians already that I simply could not believe that you were actually going to help me.

After all, I am just a mother fighting for her child, I hold no importance in any political standing.

You proved that when you say that you are here for every single person in Mississippi you mean it beyond a shadow of a doubt.

I am normally not a political person, I do not associate with a party because I believe that we should all simply just be apart of the human race party.

The most distinct thing that I can say is that I am a resident of the coast, about three hours from where you live. You are not my local house representative, in fact I contacted every single representative on the coast and not a single one would even return my phone calls.

You responded the same day, you got on the phone, you showed compassion and understanding and you held true to your word.

Every time I have reached out, you have been there answering questions. Any time you did not have an answer you held true in saying you were going to get the answer.

Not only did you show me that you cared about what I was saying but, you showed that you cared for children.

In a state where children are not protected, where it is so easy to take advantage of children you showed no fear in standing up and saying I am going to help you, I am going to help your child!

I have told my child’s story so many times, with tears streaming down my eyes, and every politician would simply look away, you have cared beyond measure. You cared more then you had too.

You are the exact type of person Mississippi needs, not only for the people, but for children, for women.

Today, you stood up to the dental board with me, with no fear. When I saw that I could not contain my excitement, I was flooded with gratitude.

I could not believe what I was seeing. It is such a rare occurance to see a politician in Mississippi actually help the people living inside of Mississippi without being forced to help that I could not believe what I was seeing.

For so long I have felt like I would never be able to help children, that I would never get justice for what happened to my child because I was not part of the “good ole boys” club.

Seeing what you did today, brought more hope to my soul then you could ever imagine, and I as a mother could never repay you for that.

You will have my vote in not only this election, but every election!

I will always support you, Advocating for Elijah’s Voice will always support you for as long as you are in office.

You have shown that your true love for public education, transparency, and all children of Mississippi is true and pure and I could never thank you or repay you enough!

My voice, may not be huge, but with whatever voice I do have I can tell you that I will always tell everyone I can that you are what Mississippi needs to be better, to get better.

I can never repay you for all of your help, but I know I can start with giving you my vote and hoping that people will see this, and give you theirs as well.

What they will find, is that if they ever have a problem that when they try to contact you, they won’t be talking to an empty voicemail, they will not send a message that will never be read.

They can rest assured that it will be you on the other end of the message; that you will personally reach out them your self, and that you will do every thing you can for them, no matter what walk of life they come from.

You truly love Mississippi and all of the people inside of it, and I am beyond grateful to have been able to speak with you!

You will forever have my vote!

Sincerily,

A beyond grateful mother

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We live in an age where everyone believes that if they do not find success it is because of someone else.

Where if something happens to someone it is because of someone else.

Can I just be the first to say that no one owes you anything.

If you are not successful at something that is on you and it is not because of anyone else.

No one owes you anything because of your past, present, or future.

Money is not the reason you are not succeeding. Someone else is not the reason you are not succeeding.

The only reason you are not succeeding is because of you.

You have to realize that the number one reason for failure is fear.

Fear will bring you down a path you never thought possible.
Fear will make you blame every one except for yourself.
To accept that you are afraid of failure is to accept that you believe that you are not good enough.

You have to stop believing the lies of your own self doubt and start believing that you can succeed in whatever you want to do.

It doesn’t matter what your goals are, you can achieve them if you believe in yourself.

If you don’t succeed today, then you have to pick yourself back up off the floor as many times as it takes until you do succeed.

There is no proven track to success, stop believing the lies that someone else can help you succeed because only you can control your own success.

It is not anyone else’s responsibility to make you a better person. 
It is not anyone else’s responsibility to make you a successful person.

If you want something then you need to work for it. 
If you want something then you need to earn it.

Stop blaming other people for your failures.
Stop blaming other people for your lack of success.

If you don’t meet your goals it is no ones fault but your own.

Stop blaming other people, stop making yourself the victim and go out and accomplish your dreams, accomplish your goals.

Life is hard sometimes, but that is not an excuse to give up. 
You are your own person, if you want something bad enough you will get it, you will find a way to make it happen.

The world is in your hands and only you can make your dreams come true, and no one owes you a ticket to your dreams, only you can make that happen.

So stop blaming the world and go make your dreams come true!

An Open Letter To Mississippi Governor Phil Bryant

June 28, 2019

Mr Governor,

I must say that I have tried for many months now to contact you about a massive problem in our state

I’m going to assume that you have been very busy trying to make Mississippi a great state, but I have to say you have forgotten a major area of concern.

I believe that you genuinely care about Mississippi and the children that reside in our state. I’m going to quickly share some statistics that you may have overlooked in your very busy life.

Mississippi is ranked 50th in oral care out of all of the states.
Mississippi has the worst oral care in all of the United States.

In 2018 65% of all births, and children up to age one were covered by medicaid.

In 2018 over 47,800 children were covered by CHIP/Medicaid in Mississippi.

In 2018 447,263 people were enrolled into the MississippiCan Program in Mississippi.

With an estimated population of almost 3 million people, that is a rate of almost 25% of our entire population!

Why am I telling you these statistics?

Mississippi is becoming almost over run with pediatric dental chains.

Kool Smiles now known as “Sunnybrook Dentistry & Braces” having 5 locations across the state of Mississippi.

DMMG or Robert’s Dental Contracting with the names of South Mississippi Smiles, Mississippi Smiles, and Happy Smiles having 6 locations across the state of Mississippi.

You maybe wondering why this is a problem if Mississippi is last in oral care.
I’m going to explain this to you.

These companies follow a not so ethical business plan.

They cater to children of low income families, getting most of their business from medicaid, but as you know medicaid does not pay out very much.

This becomes a problem when these companies must produce a profit.

The first problem,


Neither of these companies employ pediatric dentists.
What they actually do is employ general dentists, and then fly in pediatric dentists to do really big procedures on children all at one time to be able to get a really big medicaid payout.

The also fly in a “dental anesthesiologist” to administer general anesthesia to children in the office.

I am no expert, but I have gained the respect of a few PICU doctors by having a special needs child, and what I was told by a board certified PICU doctor is, “General anesthesia should really only be performed on children in a hospital or a surgery center. Children can go down hill really quickly, and you want to be in the most equipped place possible to deal with that kind of emergency”

The biggest problem with all of this is that, these companies are lying to parents and not telling them that they actually are NOT pediatric dentists.

They are not telling parents that the dentist seeing their children have never been thru a pediatric dental residency.

These dental chains market themselves as being in business for children.

Surely this is just an oversight on your part because in most states this is actually illegal.
In Mississippi there is no regulation on if a general dentist can market their practice as a pediatric clinic even if they aren’t actually certified to work on children.

It’s kind of like asking your adult primary care doctor, to treat your sick three year old. They would refer you to a pediatrician because children are different than adults.
I’m really hoping that this is just an over sight on your part, and your going to fix this, because if you don’t and a child dies will you be able to sleep at night?

The second Problem,


I am not sure if you are familiar with a term called ‘Patient Abandonment.” It’s a legal term and it refers to when a doctor treats someone and then leaves.

Leaving their patient with no one to go to if they have complications.

Lets take my son for example.
South Mississippi Smiles put 14 crowns in his tiny three year old mouth at one time, without my consent.

They did not count on him having any complications, but he did, and when he did they tried to make it all out to be in my head. They even told me many times, “Oh that is normal, oh he just has autism” thankfully I took him to the ER and he is now okay.

The real problem was that the pediatric dentist that did his procedure didn’t actually live in Mississippi, he lives in Arizona.

He flew to Mississippi to do the procedure and then left the same day, and there was no other pediatric dentist for me to take him to when he had complications.
I had to find a local dentist and beg them to see my son.
This is actually very illegal.
I’m going to hope that you don’t know that this is going on inside your state, and that you will see the urgency in why this needs to be addressed.

The third, and biggest problem!

The Dental Board Is Covering All Of This Up!

That is a really bold statement for me to make, but I can absolutely prove it!

My son was a victim of all of these problems, and I went to the dental board.

I had full faith that the Mississippi Board of Dentistry was going to make them take accountability, instead they “remanded” my sons case for lack of evidence.

That is extremely odd because I have over 200 pages of evidence.
I have documents from the hospital that treated him.

The local dentist that treated him released their records as well as his pediatrician, and his GI doctor.
The anesthesiologist that put my son to sleep, completely backed out of his next date with South Mississippi Smiles after my son’s case.

South Mississippi Smiles does not have a single consent to treat form from me.

Every single medical professional I have spoken to has said that the form they do have is simply a “medical patient update form”
That form has caused quite a controversy let me explain.

The form SMS & MS Dental Board state is a consent form


My sons father signed that form when he first brought Elijah at 6:30 AM.
I arrived about 10 minutes later.

At 7AM I brought Elijah to the back, and they put him to sleep.
I walked back into the waiting room, and my children’s father left to go to work.

South Mississippi Smiles claims this form was already filled out when he signed it, but they also state they did not know that they would need to place 14 crowns at one time, until after they got him to sleep and got the x rays.


If they had actually gotten informed consent, it would have been my signature on the form.

My children’s father was at work, and about 100 people could testify to that. He even got paid for being at work on that very day.

Every medical professional I ask says they understand that, but the entire Mississippi Dental Board does not.

I spoke with Chris Hutchinson the director of the board, and he is not nice.
I have a younger son who spent most of his first year of life in a PICU so I am no stranger to how consent works. I have had to say no many times.

Chris Hutchinson is the most unprofessional director of any medical agency government or not that I have ever spoken with.
The only thing he could say was, “You threatened my agency” over and over. Any time, I started to state facts he would say, “Well, I don’t have his file in front of me.”

Mr.Bryant, again I am no expert but if you are trying to get a mother to shut up, you should be very well versed in their case before you get on the phone with them.

He was very adamant that I was going to hear from his attorney, Stanley Ingram.


The only thing the Mississippi dental board’s attorney had to say was, “I’m going to strongly urge them to reopen this case, I didn’t know all of the details before speaking with you”

Strange, he was a lot nicer then Chris Hutchinson.

We both know that the dental board is covering up a lot of things. they have been in the media a lot lately for doing just that.

Mr. Bryant, I want you to understand one very important quote, “Hell hath no fury on the person that hurts a mother’s child!”

If you do not take a stand and do something about these chain dentists in Mississippi they ARE going to kill a child!

This is NOT a matter of if, but a matter of when they kill a child, and the dental board is covering it up for money.

I only have one last question for you Mr.Bryant.
When they finally kill a child because you let the dental board cover up what they were doing, will you be able to sleep at night?
Because you damn sure won’t be able to say you didn’t know!

I look forward to seeing your response.

Sincerely,

A pissed off tax paying mother and Mississippian.


An Open Letter to the MS Dental Board

June 27, 2019

I found out this morning that you “remanded” my sons case for “lack of evidence. I’m really not sure how that is since I gave you over 200 documents of proof.
Thru this entire process I have defended your organization. I have continually said that you all were going to do the right thing.

This morning I talked to your executive director, “Chris Hutchinson.”
Let me tell you he was no nice man. I have never met a director of any organization that thinks that it is acceptable to yell at the mother’s of children that have been harmed by someone.

You want to know the problem though?
He got on the phone without knowing the facts!

When I started spewing facts, his only reply was, “Well I’m not looking at his file”

When I said “YOUR ORGANIZATION IS COVERING THIS UP” the only thing that could come out of his little arrogant mouth was “Your threatening us, your threatening a government agency”

No, sweety i’m telling you what I believe, because when I spoke with your “organization’s” lawyer his words were, “I am going to talk with the investigative board member to get this case back open” you know why?

Because. I. have. proof.
Because you failed to tell your attorney all of the proof and he knew in that moment that I will WIN, if you come after me, for trying to “expose” your organization.

I’m not threatening the Mississippi Dental Board I am telling you, that I will shout this to the world until my dying day that you are covering up the fact that South Mississippi Smiles put FOURTEEN crowns in my child’s mouth at one time withOUT consent, and then let him writhe in pain.

Hell hath no fury on the person that harms a mother’s child.

I am not scared of your organization.
I wait for the day, that I can stand in front of a jury and show them the mountain of evidence I have PROVING that they broke the law.

It is truly sad, that I a mother can prove what they did, but an organization with a lawyer to literally spell out the law cannot.

This comes down to you all protecting chain dentists to get more money, in your pocket.

South Mississippi Smiles, is in fact NOT local like they say they are and they have a crap ton of clinics in Mississippi.

So hurting them would hurt your pocket book.

I’m sorry to tell you but, you messed with the wrong mom.

Because I won’t be told to sit down and shut up.

Nobody is going to hurt my child, blame it on autism, and get away with it.

To actually be charged with libel you have to be lying, and considering I can prove everything, well, you can’t sue me.

If you think that you sending me a cease & desist letter will scare me, go ahead and ask your buddies at South Mississippi Smiles how well that worked for them. I read it online, and i’ll read yours online.

I want to stand in front of a judge.
I welcome standing in front of a judge, so that I can shed light on how your organization is protecting a company that doesn’t care about kids, that just wants a medicaid payout.

I just have one last question, when they kill a child, are you going to lie and say you didn’t know?

Sincerily,
A pissed off mama!

I woke up this morning tired. 
I wanted to go back to bed and forget that I had ever shared my story of what I cannot bring myself to say what it actually is.

Rape. 
I have lived with the idea of what rape is my entire life.

Rape is being pinned down, held against your will, & threatened with violence if you don’t comply.
Rape is when you fight, it’s when you fight like hell after you say NO.

Isn’t that what rape is? 
That is what rape culture taught me what rape is.

I still remember what song I listened to on repeat as I drove to his house. 
Sex on Fire — Kings of Leon.

I still remember the cute white american eagle shorts I wore to his house.

I still remember his name.
I still remember his hair color.
I still remember that he wore glasses.

& I still remember the sound of his voice as he said “Wait, I just want to try something”

He said this, because I said stop, because I said NO.

I said no at least 3 times, but as I said no, his grip got just a little tighter and he was already on top of me.

At 16, my brain processed that I had 2 choices, lay there and be safe, or fight.

I never fought. I never fought. I never fought.

I. Just. Laid. There.

I looked at the ceiling thinking this is the way I am loosing my virginity!

He would finally say, “Do you want me to finish or keep going?”

I can look back and still feel the emotion that I felt at that very minute. 
I remember being so terrified, it took all of the courage I had to simply say, “finish.”

The worst part? I didn’t immediately leave.

I laid there for what must have been an eternity knowing I had to pee so badly, but I was simply too afraid.

The next day I learned what “soreness” from sex feels like.

I can tell you exactly what I was doing the moment I felt it for the very first time.

I squatted down to get a country fried steak out of the oven, and boom there it was. 
The pain that I did not know even existed.

“Rape culture taught me that I deserved it, that I asked for it, because I went to his house.”

Rape culture gave him the out he needed to be able to continually text me.
Rape culture gave him the ability to continually go to my job and “talk” to me.

He wasn’t coming there to get groceries.
He was coming there to make sure I wasn’t talking, because he knew, he knew I said NO!

“This man & Rape Culture changed my entire life.”

At 16, I was happy, I was an honor roll student, I was going to go to college, and I was going to make my father proud.

At 17, I was smoking weed, I was skipping school, & I was failing almost every subject.

At 17, I tried to kill myself.

At 18, I dropped out of school completely.

At 18, I started having sex with as many men as possible, to prove that I had the power to YES!

I needed to prove that I had the power of control over my own body. 
I needed to prove that I had the power to say yes or no.

Rape Culture stole high school from me. 
Rape Culture stole College from me. 
Rape Culture stole my father from me!

My father, was the best dad any one could ask for, and in my efforts to hide my secret from him, I completely shattered his hopes and dreams from me.

He didn’t understand why, and I couldn’t look him in the face and tell him what happened.

“I believed that I deserved every single thing that happened to me that night.”

I needed him to be mad at me, I needed him to not understand.

I believed that it was my consequence for what I did to myself.

Since that night, I have struggled eternally with my own self worth.


I have made bad decision, after bad decision.

I have struggled with depression, anxiety, & addiction.

I had a rough start into childhood, but I found my way and I was succeeding at 16.

“At 17, I was trying to end my life, and when that didn’t work I decided to do everything possible to destroy it.”

I don’t believe there is an easy fix to the problem of rape culture.

What I do know is that we need to focus less on teaching men “How to be good men” 
& Focus more on telling girls what rape is.

No one needs to teach a guy that No means NO, they know what No means!

“Women, have been taught this idea of what rape is, and if their rape does not fit the mold of society’s definition of rape, they bury their secret deep down, until it eat’s them alive.”

This. Was. Not. My. Fault. 
Rape. Is. Not. A. Woman’s. Fault. Ever.
No. Matter. What.

My father once sat me down, and said, “I talked to someone and they said, you are showing signs of being sexually assaulted, did something happen to you? Just tell me?”

I lied, and said no. 
Because Rape Culture taught me to stay silent, this was my fault, my secret to bear.

I will always struggle, to call what happened to me rape.

I don’t know how to change that for myself, but what I do know is that, I will never overcome this and get my life back if I don’t talk about it.

It’s time I release this secret, in hopes that one day a woman will read this, and know that she is not alone!

In hopes that she will tell someone, anyone, & that she can get the help that she deserves.

“Rape Culture needs to focus less on teaching men what they already know, & focus more on empowering women to know rape is when you say NO!”

One Day At A Time: The Life of A Special Needs Mother

June 24, 2019

Sometimes, I just don’t understand.

I don’t understand why God picked me to be the mother of two special needs children.

I love my children more then anything in this world, but sometimes the isolation of it all is so overwhelming.

There are days where it is so loud inside my house that I cannot hear myself think. 
The constant squealing, yelling, jumping up and down.

Sometimes, I sit down at the end of the night and ask why? 
Did I do something wrong? 
Did I break some cardinal rule?

I do not understand, I think I let anger get the best of me in every single way, I know you shouldn’t compare but, I can’t help it.

I fought like Mohammed Ali to stay pregnant with both of my children.
I did everything the doctors told me.

Some days, I have an extremely clear path of what I am supposed to do with my life, and some days I could not even tell you what day of the week it is.

I live in a constant state of fight or flight, the first sight of a retraction and i’m checking my bank acct like, do we have enough money to spend 3 weeks in the PICU right now?

I love my kids.
& I love God.

I feel forgotten & invisible.

I feel as though people don’t see. They do not see the stress of it all, and they blow it off like it’s not that bad, or i’m just being over dramatic.

There is not a single second of the day when there is not at least 1 child attached to me.
I have tried to hide, many times, it does not work.

One time, I did succeed and my son was screaming at the top of his lungs, “My mommy is gone, I can’t find my mommy” 
I felt so bad, I let him eat cake and ice cream for dinner.

Now, I just circle from one room to the other, because it takes them a few minutes to realize that i’m no longer in the same room with them.

When I poop, my kid stands there and says, “You go pee pee, or poo poo? Mommy, you poo poo?” and if I lock the door he will undoubtedly bang on the door the entire time while screaming, “Mommy let me in, please mommy, please.”

I tried over and over to some how “fit in” with the normal mom’s but I guess they didn’t like my gtube jokes, or the fact that sometimes my child gets fixated on something when we are out, and I wind up buying it, because it’s easier.

“That’s why he is so bad, because you buy him everything if he screams, let him scream for 5 minutes and he will forget about it.”

Actually, he won’t. He once wanted a gas station, and he talked about it for 3 weeks, until I finally found one because it was all he talked about, for
 3. fucking. weeks.

I don’t know if that is just not a normal kid thing, but my son with autism does not forget a single thing.

If you tell him that at 2pm he is going to ride a pony, you better find a pony for him to ride, because he is not going to stop until he rides a pony!

I once tried to have a “play date” and my kid came riding out of his room on his mickey mouse air plane with a string of oxygen tubing screaming, “I shoot the fireeeeeeee, this is my fireeeee hoseeeeeeeee”

After that, the normal mom’s never wanted to have another play date.
We have 10438534 feet of tubing, and it does kind of look like a fire hose, and it makes him happy so why not? 
It seemed to make the other mom’s “nervous.” 
The reality. is that oxygen tubing, suction catheters, feeding bags, aren’t sad to us, and they don’t make us nervous. 
They are all a normal part of our lives, and sometimes my kids find the medical things and they play with them.

I feel like I don’t fit in. — not that I don’t fit in with normal moms, but even some special needs moms.

I don’t know if you have ever seen a group of special needs mom, but girl, they will have a compare/ competition worse then an episode of Jerry Springer, especially if it’s in a Facebook group.

When I see someone post a picture of their child’s brand new gtube stoma I just want to comment a bag of popcorn, because one person is going to say,

“My kid has had a gtube for 348 years, and you need to leave that thing alone”
& another person is going to say.
“No No No, don’t listen to her, you need to clean it everyday with only basic soap and put a gtube pad on it, I totally have the cutest ones, here’s my esty link”
& another person. 
“Why does everyone have to always put etsy links? If she wanted to buy your stuff she would ask! Girl, all you need is some Calmoseptine, it’s not that bad”
& then comes the admin. 
“Yall are all wrong, everyone of you, all children are different and you need to call your child’s doctor, they can probably use some silver nitrate, but you need to consult with your child’s doctor. We do not give medical advice on this page, I am now closing the comments!”

Me, I don’t even comment anymore. 
I just follow the post and sit up at 2am when I can’t sleep and laugh.

I’m honestly not sure where I fit in, or if I ever really will, but what I do know is that at the end of the day, when crap is really hard, I walk into my children’s room & I just watch them sleep.

Right now, that’s enough for me to get thru the day, night, week, month, or what ever day of the week it is.

Tomorrow, my kids will likely only wear a pull up and I will probably say, “I’m about to loose my shit” at least 30 times, but they still love me,and that’s all that really matters.

I’ll keep praying for sanity, hiding in the bathroom, and trying not to loose my shit and hopefully i’ll raise two humans the right way.

I’ll surely keep trying until God decides i’m not supposed to do that anymore!

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