Words

Disclaimer: There are a few quotes here that do have some adult language. Sorry about that. There will also be talk of abuse here. Thank you all for those who contributed.

"Sticks and stones may break our bones but words will never hurt me!"

Remember that? That's one of the biggest lies to ever go around.

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For many people, it would take them longer to come up with the best thing ever said to them than the worst thing said. Forgiveness or lack of, has nothing to do with that. Forgiveness of what someone else has said or done doesn't mean forgetting. It doesn't mean the pain is erased...

If I'm wrong than prove it. Please.

I'm going to start out by sharing experiences of my own and from others who shared with me anonymously some of the things that hurt the worst. This isn't all of the stories I heard, just some... Many echoed the snippets here. There is a point to all of this.

 - When I was in school (different state) the subs were the worst..... I remember one using a yard stick to smack my desk and said "What are you an ADHD retard or something?"

 - Not long ago I had my daughter tell me that a girl she knew and her parents left the church, both serving in the church because "your mom sucked on that stage so we left." Well, if I sucked that bad then shouldn't a director tell me I do? I know I'm not as good as I once was but that doesn't mean "I suck" now because if I did, how else would I have been still playing my horn for services and community functions for almost 15 years now?

- When I had my miscarriage between my two kids "That baby was just too defective. It couldn't survive like ___ could."

 - Growing up, I was often told I should have been aborted, I am a worthless nobody, I would always be locked up, I would learn nothing, I was hopeless, too stupid, and soooo much more....

- "You know all of that abuse story you said happened? You are a liar and my job as your counselor is to convince you and your mom that you are full of shit and all you want is attention." (Yes, I was told that when I was 12)

- "Please don't ever get pregnant again. You rolled the dice several times already, you have two disabled kids and one who didn't make it because it was too deformed." Deformity isn't why I miscarried yet they didn't want to hear that.

Here's some of what others shared with me, of where words hurt them.


- "You're fucking disgusting, shut the fuck up."

- “After meeting your family, there’s a huge contrast- they’re class and you’re trash, you and your nigger kid”

- "Are you still pregnant? Didn't you have enough kids already?"
- "I was told I was better off dead...
- "All I am is an educated idiot and I suck at being a mom"

- "Just do it already" my mom when I was suicidal and holding a toy gun to my head making it click."

- "One of the most hurtful, horrible things someone ever said was That I had not prayed hard often, & that's why I had my first miscarriage.

- "Maybe the miscarriage/stillbirth was a good thing because that'll be one less disabled person on this planet!"

- "When some kids at school found out I was adopted I would get prank calls of them laughing saying no one wanted me."

- "When I got told children like my son would not enter heaven upon death because he wasn't perfect."

- "I lost my husband to suicide in 2014 I was widowed at 37 I was so do devastated I could hardly function.Well a year later my sister got mad at me over something very stupid and she said well at least I'm not such a bitch my husband killed himself...."

- "His mom said that it was a good thing I miscarried, because we didn't need anymore kids".

- "There's soooo many but probably the most hurtful is being told by the man I loved that I wasn't worth shit and not worth marrying."

- "Every time my dad saw a certain popular TV character on a popular TV show, he would say, "I Hate him! He reminds me of you."
 
- "You realize you're only good for sex right? That's the only thing you do well."

- "That I was bought and paid for. Also when our daughter turned 18 years old his contract was up."

- “Well maybe if he listened better I would keep him more." (talking about my newly diagnosed ADD child who mind you, JUST got student of the month for his awesome behavior.) She has kept him a total of 5 times in 7 years and I never ask because I know it will inconvenience her."

- "Years ago, I had a son pass away while I was home with him. When my husband and I divorced he wanted custody of our other children. He told me "They will never give you custody of the kids. You already let one die."

- " Almost 12 years ago I lost twins to TTTS. I was told well you have 3 older healthy baby and another healthy baby on the way or it was all gods plan or you couldn't of handled twins......"

- "I was staff in JROTC, well, someone higher ranked than I did was overheard calling me a slut because I was pregnant by my then fiance and ONLY lover"

- "You belong on the side of the road with all the other trash" -My dad

- "When I was younger my great grandma took me shopping and as soon as we walked through the door she told me “if you weren’t so fat you’d fit into half the clothes in here” Another one shared a similar one. "My mom to me as I was trying on clothes I liked. "Wow! You trying to go for a new high weight record?"

-"I was raped by my sisters boyfriend when I was 12 and when I told my mother,her response was- I guess I have to believe you because your my daughter."

- "After my sister was killed, my mother has made many comments that the wrong child was taken from her and that my sister will always be more important than me."

- "I was told that I should abort my son because I didn't need anymore kids."

- "When I had my miscarriage everyone said "It was god's plan and you will have a baby when you're ready"

- "That i was a mistake and that the wrong baby died.
I was the 2nd child but my sister was still born 1 yr and 8 months before my birth. Those words above are from my "mother"

- "I was told by someone close to me that I wasn't allowed to express any sadness because it was disrespectful to express my full emotions. That hurt me deeply. I shut down and refused to feel anymore. I shut my emotions off.

- This wasn't something said to me but what happened. At my wedding, during the father-daughter dance, my step-dad quit not even halfway through, told my father-in-law to finish it while I stood there waiting. In front of everyone. I didn't do anything wrong, I simply just wanted a father-daughter dance.... (Yes, it's been almost 15 years ago yet I still remember it all sooooo vividly...)

There were a good handful that either echoed these or very similar. So many baby losses echoed similar stories as well..... Family can sometimes be the worst source of hurt..... The stories I read to put this post together proved that.... Not just with words either.... Words never hurt? I beg to differ.... "Well what did they say to deserve what you got told?" I've heard that said to me. "Well, what did you say or do that caused them to say ___" "Did you get outspoken again and stir the pot? Letting sleeping dogs lie is the best you know!"

Read my lips: THAT DOESN'T MATTER!! 

Those who say hurtful words are responsible for what they have said, no matter why.

"Told you so" is just as bad. That one I'm not guiltless of saying. Either in joking or seriousness. Yet the point is there...... Words hurt. Words last. Words change us. Words affect who and what we are.

True story!

Many times the words that hurt start when we were children. Growing up I never felt wanted, worthy, and honestly loved, but by one. Yet even then the years of everything else sometimes created doubt there.... Feeling as if I'm worth it to anyone is still a battle I face. Wondering if what I have to offer, to share, to talk about, to learn, is really worth it. If others see it as worth it. Yet when we hear truly good things said to us, those help. They inspire us. They help us feel loved and appreciated. Does it always take away pain? No..... But they sure at worst help the ache not hurt as bad.

Here's some of the best things people have heard.

I shared a few of my own and some of these are from others who shared with me, as the hurtful statements earlier were shared.

~ "You are one of the best advocates we have ever seen a parent be for their children"

~"We see a lot of parents and children come here to Children's for various things and you are one of the best we get. Always on top of everything and all your ducks in a row ready to go."

~ "Keep speaking up no matter what others say. Your story, your voice will make a difference."

~ "Mommy, I love you. You fight for me. You never give up!"

From others:

~ "My dad told me that he uses me as an example all the time of how to be a great parent in the parenting class he teaches."

~ "The best thing is sort of a tie between hearing my kids say "I love you," hearing them say "mama" for the first time. Top billing also goes to hearing a doctor compliment on a "good catch" on a patient's lab work."
 ~ "That I'm enough, that I'm doing what I need to do, and that I'm doing good in it. "I'm proud of you. That shit is hard to do. You're doing a great job"~ "You are so inspiring"~ "I didn't know there were people like you in the world."

~ "I love that you're my mommy."
~ "When people tell me they admire my parenting and strive to model aspects of it."

~ "That I am a good mom even with all the struggles that entails with 2 special needs and 3 just as special children. And the longest to think about was their good.

~ "I was told that I was strong enough and that my voice mattered."

You know something? I also asked all who gave input which was easier to think of first. The bad that had been said or the good? Easier to tell a story to. Not all but much of what I heard was like this: "The hurtful for me is far easier to think of than the good." For some it was much harder to find the good due to so much in their lives.... You see the difference in the list as well..... Imagine if we lived in a world where we were affirmed for how we felt, nevertheless if the person hearing us cared or not. If they felt the same way or not. If they agreed or not. If they were depressed or happy......

Now let's talk about clichés..... We've all heard them. I'm going to go into the "churchy" ones. Not all shared here are exactly cliches but some relate to the hurtful stuff that's happened to people as well. 

Many of us hear sayings like "God won't give you more than you can handle " or "Satan is really testing you with this right now" stuff. Or worse "If you weren't a sinner, your child wouldn't have to go through___" or the "This is your atonement for making God mad." stuff. "If you pray more/harder this wouldn't have happened/happening" My latest "favorite" "Your child wouldn't have epilepsy if you only prayed more. Or this one when I share anything prayer request wise or with a person who asks and I don't give 100% positive news "You have unrepentance you need to go to God about." or "If you would be more positive and stronger in the faith, this wouldn't happen/be." And more....

Here's some others that were shared with me.

- "A friend faced this. A woman was dealing with post partum depression. Her husband to go to the doctor for her postpartum depression. Her husband felt he had to ask the pastor for permission (that was the norm in that church/cult). The pastor told him that either he get control of his wife or lock her up in a mental hospital because mental illness is not real and is only a manifestation of sin. He chose the mental hospital....- "The "God won't give you more than you can handle" line is bullshit. It comes from Job where Job was allowed to be tested. God didn't send the trials to him but allowed him to be tested. And then that got warped into the sentiments we hear today. Life happens and we are tested beyond what we can bear at times. So we stop most everything until we get the strength to take the next step forward. We often find ourselves alone in those trials either because friends/loved ones don't know how to help or don't understand and then our isolation takes longer."

- " Battling depression & anxiety I’ve heard a lot of “just be happy”, “God doesn’t put more on you than you can handle”, “Just pray about it” & so many other cliches that border the religious line. Given my beliefs, or lack thereof, I’d rather hear nothing honestly - or have the person give me a chance to just talk it out if I chose to do so."

- "I always here when it comes to my anxiety..."just don't think about it" Oh gee thanks never thought about that."

- "Just be strong"........ that's a great one. 🤨 like no $h!t sherlock, I was planning on just melting here and letting whatever is bothering me devour my soul."

- "It was drilled into my head as early as I can remember that every single thing I do, intentionally or not, will have its consequences. It was a life of fear. Every single harsh word or inappropriate/unkind thought was going to send me to hell. It didn't matter how saved I was or how often I repented, the SECOND I messed up and re-sinned, that place in heaven would be revoked. I realize now that this is not typical of Christian religions and absolutely is not what the Bible says. But I carry that hurt with me."

- "Everything happens for a reason. God needed another angel. He’s in a better place. — These made me so FURIOUS right after my son died. I just wanted to scream. You really want to tell a mother who just lost her baby that he’s in a better place? What could be a better place for a baby than with his mother? My breasts were still lactating with no baby to feed! I just had to go into my son’s nursery and pick out an outfit for him to be buried in. (I believe in God and Heaven, but these cliches are not biblical.) If you can’t tell, I dealt with so much anger over these statements and the people who said them. If you don’t know what to say to a grieving person, a simple “I’m here for you” will suffice."
- "It makes me mad especially when we didn't know what was going on with my baby sister mind you she has died twice already but everyone would say well god has a plan and if she goes then she won't suffer anymore or everything happens for a reason. I understand people say those things and don't mean any harm but damn no one wants to hear that when their family is hurting. I would of been more happy to hear i am here for you."


Do we really think God feels this way? "Oh not her again! Can't you just get over that already?" NO! None of those phrases are Biblical. So why do we? Why do we feel the need to tell others this stuff? Why do we have to tell other that if they are having a hard time, they asked for it or their faith isn't enough? Why can't we just simply offer to sit down with someone and let them speak their heart, no matter what it reveals? Why can't we minister to people like that? Isn't that what Jesus did? Aren't we commanded to be like Him? Well, then why don't we? It's one reason why I love Celebrate Recovery so much...... There we can do just that. We don't question the faith of another like so many who are struggling hear from church members, known or not.

What do you know about their faith if all you do is see them on Sunday's, if that often?

I loved these!

~ "I have had an anxiety disorder since i was a kid and have pretty much every verse in the bible relating to anxiety or fear memorized because i was constantly told as a kid that i just needed to memorize and believe those verses and believe in God and the fear and anxiety would go away. to just trust more. it made me start second-guessing my faith and whether or not i knew how to believe and have faith and caused a lot of issues for me growing up.
I feel like if there was more understanding and explanation and less of "if you would just try harder" that it would have been better because at least I would know it was nothing i was doing wrong.
So understanding and explaining more than judgement I feel would have helped a lot more. it could have taken the pressure off. Also I don't think I can think of any situation where the person is better off after being told they're being punished for being sinful. like. that doesn't help. it's just judgmental and hurtful."


~ "Always the best thing to say/do is just let the person going through rough times know you are there if needed. If not that you will simply continue sending Light and Love their way."


(My interjection here - If you say you will be there, then truly be there AND listen to them, meet for coffee, show compassion and love no matter where they are at in their heart, mind or spirit because otherwise if you are not there as they need, it causes more hurt, angst, and feelings that they don't matter to people/God.)

~ "I like being reminded that God didn’t cause the awful....that’s just part of living in a world that isn’t heaven. It’s flawed. It’s sick. It’s full of heartache along with the laughter....but regardless of what happens, God can and will use it to build strength, love, and literally take the brokenness and ashes and build something beautiful with them. He has done it with my life, time and again." 

~"I personally know that God absolutely gives me more than I can handle, because in those times, I am reminded how to learn to lean on Him and put what I can’t handle, at His feet. We were never meant to bear it all alone. For me, I like being reminded that God didn’t cause the awful....that’s just part of living in a world that isn’t heaven. It’s flawed. It’s sick. It’s full of heartache along with the laughter....but regardless of what happens, God can and will use it to build strength, love, and literally take the brokenness and ashes and build something  beautiful with them. He has done it with my life, time and again."
 

Amen! Now I gotta keep remembering that in the storms too....

Last hole to dig. Kinda goes along with the cliché topic.

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What is false or toxic positivity? Toxic positivity is the belief that if you just stay positive it will allow you to power through whatever obstacles you encounter. The concept isn't all bad, but it could also be used to silence others or brand others as "negative" "depressed" or whatever other labels get put on them. You all know at least one person who is "always worried" "Negative Nancy" or things like that. They always get told stuff like this:

"Fake it til you make it"
"You'll get over it"
"Just be positive"
"Good vibes only!"
"Stop being so negative!"
"Think happy thoughts!"
"Just be happy!"
"See the good in everything!"
"Just be happy!"
"Just ignore the bad!"
"Just be strong!" "Just breathe through it"
And many more......
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I loved what this site said. Yes it's not a "Christian" site but the words are no less true because of that.  "Today’s spiritual (and sometimes psychology) world feels fake to me. Lots of pretty blond yogis talking about positive vibes, about not allowing negative energy or thoughts to get to you, about surrounding yourself with only supportive positive people.

Unless you live in a bubble on Mars, this is not only not realistic, but this is also a recipe for staying emotionally and psychically dwarfed, never growing or truly learning who you are.

We (myself and many other spiritually minded psychologists and teachers) call this, “spiritual bypassing.” An attempt to transcend without having to face the humanness or the negative. When, in fact, it’s the ugly parts of our humanness where the growth occurs."

The best statement from that site said this: "A lot of the stigma around mental illness is perpetuated by this fake positivity. Telling someone who has clinical depression to not focus on the negative and only the positive does nothing to help them. It perpetuates their feelings that something is wrong with them when they cannot simply “pull themselves up by the bootstraps.” I would actually say to someone struggling with depression that they are more tuned in to real human experience and emotion than the person pushing “positive vibes only” on them."

Another page put it like this:


"Toxic positivity is a social media contagion, born out of good intentions but with the end result being that people aren’t always allowed to be honest about feeling down, or the things they think are sh*t.  #GoodVibesOnly might as well read #KiddingMyself – or #DontCallMeOnYourBadDays.
People don’t choose to have negative thoughts or feelings. They just happen. Because not everything is awesome, and sometimes people are dickheads. And most people don’t set out to be dickheads – sometimes you make a bad call, and lo and behold, inadvertently, you have been a dickhead. It happens.
Chasing eternal happiness and perfection has actually been shown to make us feel even worse when we do have negative feelings – yikes. That, instead of just acknowledging that human beings all have a broad spectrum of emotions and behaviours, which need to be thought about and worked through on a daily basis. As Psychology Today put it, ‘Many people swear by positive thinking, but few people are helped by it.’

She continued to share,
"Exhibit A: inspirational/motivational content about avoiding people in your life who don’t make you feel good. In theory, fine. Who needs those guys anyway? In practice, this creates a number of issues. Prime examples include:

• People who struggle with their mental health, who may already feel like a burden at times, now see that you don’t really want to hang out with people who make you feel sad / bad / worried. So they don’t reach out when they need support.
• Oh and now you’re embedding it in your own mind that if you’re having a grey day, it’s probably best to bottle it up and squash it down – because you’re a beacon of positivity! Good Vibes Only! Must. Not. Be. Negative. Ever.
• You also cut out people who challenge the things you do or say – because it doesn’t feel good to be told that you’re behaving badly, or that you could do better. Oh right, because it’s not like you wanted to grow as a person, is it. Hmm.

As one person put it, “‘Don’t be negative’ has come to mean: don’t think critically, don’t feel, don’t bring your trauma near me, don’t ask for help.”
It’s all very well wanting to take everything life throws at you with a smile and a skip in your step, but pretending that you live in a bubble of joy, bliss and rapture isn’t as healthy as the GoodVibeTribe would have you believe. Fake it ’til you make it does not work within the human brain.

Wait – too much positivity can make you feel… worse?

Oh yes. Demanding that only happy people and positive thoughts come your way feels like it ought to be the recipe for an easy life, but sadly, it ain’t.
Even outside of social media, things like self-help books can exacerbate the issue. In an old Newsweek article on the “Tyranny of positive thinking“, there are interesting notes on the connection between motivational literature and increased feelings of failure, or of being somehow ‘defective’ for not managing to be positive and productive at all times.
In an age where suicide is the biggest killer of young men, can we afford to write off toxic positivity as just another silly social media fad?

No-negativity posts might not put some people off, but for those struggling with anxieties and poor mental health, it can be enough to turn a grey day into a very black one indeed."

The best thing she said though was this: "Try to remember that social media really is a load of crap. We all use it, we all get good and bad things from it. But if it’s going to be a place where we post about our everyday lives, it ought to be a place where we can reach out regardless of whether we’re going to leave someone feeling uplifted as a result or not.

A third site had this takeaway for me on this topic.


"The Tyranny of Relentless Positivity

Normal, natural emotions are now seen as good or bad. And being positive has become a new form of moral correctness. People with cancer are automatically told to just stay positive. Women, to stop being so angry. And the list goes on. It’s a tyranny. It’s a tyranny of positivity. And it’s cruel. Unkind. And ineffective. And we do it to ourselves, and we do it to others.
If there’s one common feature of brooding, bottling, or false positivity, it’s this: they are all rigid responses. And if there’s a single lesson we can learn from the inevitable fall of apartheid, it is that rigid denial doesn’t work. It’s unsustainable.For individuals, for families, for societies.And as we watch the ice caps melt, it is unsustainable for our planet.

But when we push aside normal emotions to embrace false positivity, we lose our capacity to develop skills to deal with the world as it is, not as we wish it to be.

Research on emotional suppression shows that when emotions are pushed aside or ignored, they get stronger. Psychologists call this amplification. Like that delicious chocolate cake in the refrigerator, the more you try to ignore it, the greater its hold on you. You might think you’re in control of unwanted emotions when you ignore them, but in fact, they control you. Internal pain always comes out. Always. And who pays the price? We do. Our children, our colleagues, our communities.
Now, don’t get me wrong. I’m not anti-happiness. I like being happy. I’m a pretty happy person. But when we push aside normal emotions to embrace false positivity, we lose our capacity to develop skills to deal with the world as it is, not as we wish it to be."

So perhaps think of other ways you could speak to other people. Give them validation. Speak to them as you would want spoken to, good times or bad. Like this example.

a credit but I got this from a friend before I knew where it started

Imagine if we lived in a world where we were affirmed for how we felt, nevertheless if the person hearing us cared or not. If they felt the same way or not. If they agreed or not. If they were depressed or happy...... Major storm in their life or a bright and sunny day.

I could keep going all day..... Many of these who shared stories with me, whom I promised anonymity to in this post, are women who have been hurt. They have experienced joy. They have experienced everything in between. They want heard. They want people to see what words do. They remember, regardless of if they want to remember or not. One can't just simply forget because they are told to.

“Feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear…are actually very clear moments that teach us where it is that we’re holding back. They’re like messengers that tell us, with terrifying clarity, exactly where we’re stuck.” –Pema Chodron


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"Our social system is built around the “words will never hurt me” idea in so many ways … leaving those who bear inner wounds without support or even sympathy. When we protect a child who is beaten, but not one who is being told he is worthless every day, then doesn’t that say everything about our view of what a wound actually is?" Mere Dreamer A commentator from the sticks and stones pic

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~ The conventional view of emotions as good or bad, positive or negative, is rigid. And rigidity in the face of complexity is toxic. ~ Mindful Staff

So how will you use your words? Written or spoken? How will you give someone validation? How will you help someone who is "having issues" or going through storms? I even challenge you to find someone you don't like or who is not "popular" heck, find an "outcast" and start a conversation. Keep it real. Don't go gossiping back to someone else about it either. Talk about the stuff nobody wants to hear about. Shine light on it. It can't be dealt with till it's talked about and spoken of. As I saw this quoted, “Write what you’re feeling. Tell the truth. Write like nobody’s reading.” Speak it too. Someone will hear you, just keep speaking till one does. You never know what you may do for someone else. You won't always be appreciated, and sometimes they will try to silence you or oust you but keep doing it anyway. You never know who needs what you have to say. Just think about how you say it.... You never know what you may have done for that person you talked to. Think about it..... You could have even saved their life.

~ Special Momma ~

To the man who loved me as a child

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Many of you may think this was my father. Those who know my story would know it was not. Others would think it was my step-dad. It is not. Because he was not in till much of my childhood was over. This will be for my grandpa, the musician, the veteran, the teacher, the carpenter, the fisher, the one who I adored till he passed not long after I turned 15.


This is for you grandpa.

"The first memories I have of you are of fishing, ice cream, root beer floats, the fireplace and the Sir Walter Raleigh pipe tobacco you always had. Your laugh was contagious. I can still hear it sometimes, despite you've been gone for 21 years. The fireplace always kept me entranced, at least till you got gas and no longer burned newspaper. The basement was your "man cave" but so was your workshop that was attached to the basement living area.You loved that area. The smell of sawdust, a hint of your tobacco and basement always lingered.

Christmases were special. There were family dynamics going on I didn't understand then till much later but at least we all got together and enjoyed it. For most of my birthdays or Christmases you got me at least one toy that taught or represented music in one way or another. The toy saxophone at roughly 4 or 5 I think mom found the most annoying. haha Or was it the harmonica when I was three?

As the years went on, we didn't get to see you as much as I wanted but I knew you loved it when we did. You even went overseas to see us. I never have forgotten.You never gave up on me, even when everyone else did. You never told me I'd amount to nothing. You never told me I'd wind up a criminal. You never told me I'd always be in prison. You never told me I belonged in psych hospitals for life. You never told me I should be or wished me dead. You never told me I'd be useless to society. You never told me I was too stupid to learn anything. You never told me I should be controlled. You never told me I should have been aborted. You never told me that doping me on pills was the right answer. I don't know if you ever thought any of that, or talked about it when I couldn't hear you but at least you never said anything like that to me or where I could hear it. Thank you for that at least. By you not being like that to my face, I believed you didn't listen to all the lies and hate that so many others in this world gave.

Music, your music.... I never got to hear you play your trombone but I heard the stories. I envision you much like the first pic on this post looking like that playing on it, and especially helping your brass students with their horns. I remember playing on grandma's organ. I remember playing on your piano. Those are fond memories but that's not what I remember the most. After time of playing a game called Professor Piccolo, I wanted to play in the band. I wanted to be like others in the family. I was wanting to play the clarinet. I do remember you said because of the orthodontic work I needed, clarinet was out but you had a flute from your old music store left and I started on that. I still have that old Artley. I only wish now I could get the overhaul done on it and also fix the plating so it looks like what it did when you gave it to me. Years of marching band all but ruined it.....

Now, I have wondered over the years if part of the no to the clarinet thing was because of affordability however, I learned to love the flute and what it began. (I have shared a few other posts here on what music has meant for me. Post here as the most recent. Here's the others if you wish. Music  Al Fine  Music Journey)

I did summer band going in as a 7th grader with the rest of the kids going in at 5th grade. Two years behind. I'd have to catch up, in a world that already saw little value in me. Game on! So that I did. Remember me calling you the night after doing my first day in 7th grade band? It was like the second or third day of school because they tried putting me in 5th grade band. I had a mountain to climb to learn in weeks what the other kids did in two years but in time I did it. I called you then too. When I finally mastered the Bb scale by memory, could play the version of William Tell we were working on, but I also told you about being told by others in the band how bad I was. You told me to keep going. To focus on the one that did encourage me in my section. To work hard, to practice and I would catch up. So I did. I don't learn the same way others do however, so to get things to "click" I had to see it done, to hear it done, not just read about it. That's what made practicing alone so hard early on, it was easier when I could play along or hear what it should sound like first.

You had me start on this book. I kept it, not because I still need it but because of the memories. I still have all the letters you wrote me while I was in lockups and group homes, towards the last few years of you being here..... I only wish I wrote you back more, or had the chance to even collect call you like you wished at my last group home, before you passed. Though I was glad for the daytime calls I did when not in school and home alone, even though I didn't realize till later how bad the long distance charges were..... Oops....

My last group home, my music world expanded so much there... Our band director was just like you in many ways. He's passed on too you know.... My senior year he did. Yet he saw potential in all students, unlike many teachers I had prior. He had the patience of a saint and never got angry, at least where we could see it. I know I was slow to catch on, with many things. yet once I did, it never left. Even there I was told how stupid I was by some in the band, especially the flute section I was in. It took me a little longer than most to catch on to marching in time and playing right at the same time. At that point though I honestly did tell all of them to kiss my grits (Not put that nice...) and instead of jumping all over me telling me how stupid I was, how about they help, and have the section leaders act like leaders, not morons. You would have been proud, if you could have been there. They told me to not March and play at the same time, but you know, I did it anyway, despite how stupid they thought I was. The day we won state my freshman year..... Such an amazing and nerve-wracking day. Yet the only thing I wished beyond winning was anybody had been there to cheer me on.... Not a soul came... Most performances of mine though, especially once in high school, not a soul was in the crowd for me. I got used to it. That's not why I played though. It's one memory that is there, like it or not...... Auditions for chairs, I got last again. I was last in 7th due to being so new, last in 8th because of coming in mid-year but also because of skill. 9th I got last but it was close. It was that freshman year however that told me I needed to major in music teaching. The band director with his kind, old soul helped that. I finally had something to strive for. Several band pieces to this day, I can't hear without flooding memories of his teaching. First Suite in Eb by Holst to be one. Symphonic Suite by Williams to be another. I didn't do a solo for Solo & Ensemble but I did play in the flute choir. We got division 1 at district and state for that. It was finally then that the flute section started to accept me.

That next summer, we prepared for marching season again, I was a sophomore and was ready. That was the last summer I saw you alive.... I think you knew it was your last time getting to hear me. It didn't register when you gave me my final music lesson till after you passed, that you knew..... Your words encouraged me, they game me fight, the will to stay at it and to persevere. I only wish I called and wrote you more often, even as the group home allowed it. Your heart just gave out not long after. The first day back to school after your funeral was sooooo hard..... I just wanted more time. One more "I love you." One more lesson, one more float, one more day of fishing on the lake..... Just one more..... "I don't think you truly know how much the odds were stacked against me from day one. So few saw any worth, value or purpose in my existence. Those who were supposed to love and teach instead showed apathy, disdain and sometimes hate. No lie..... You were a bright candle in my dark world. I cherished the visits with you, even though they were too far apart and too short. Far too little time..... What you don't know is despite the depression I had been in when I started music, despite seeing no value in myself back then whatsoever, you introducing me to music saved me..... It saved me because it showed me I could be good at something. Even if it was the only thing.... (At that time, it pretty much was!) The depression and wanting to die almost won but it didn't...... You saved me from myself, though it took a little while to see it.... That day back to school, I heard several condolences that day. What touched me the most was our director hugging me and saying that I didn't have to play or march that day if I didn't want to. I chose to anyway. That day on the blacktop going over drills and learning new charts, I saw a brilliant sundog. I knew you were with me. As tears rolled down my face in that moment, it showed me you were still there and now you could hear every note I played, good or not. Playing that day was hard but I did it. Two months later, we went to state again but did not win this time. Solo & Ensemble that year I did my first solo. I got a second division but I didn't care. It was the first solo that I knew you could hear and given how I was really close to a first division, I took it. Playing three years and I did that accomplishment. I also was no longer last chair!

Soon after, I had to transfer schools again. That was a little rough but I was ready to keep going with music. I also got private lessons again, paid myself and also paid for an intermediate flute. Paid that off. I sure loved that Artley but it was really in disrepair and starting to hinder me..... Junior year I marched piccolo for the first time. Really enjoyed that. Concert season I got third chair in the second band, about the middle compared to all the flutes at this school. Big progress but I was bound to really hit it with Solo & Ensemble again. Went into the hardest division this time and got a second division rank. Messed up with the piano part, that was the only thing that got in my way of State. Senior year we got 9th at State marching band, heard about the passing of my first high school director at the first competition that year. Grandpa, had you known that director I had, I think you two would have been best friends..... Senior year also brought the end of not just school but of dreams.... I again knew my solo that year would be heard by you, and also it would be the last of S&E, at least for high school level. I got a first division at State. I was sooooo proud of that. I also got third chair, first band. I was happy. First part, no piccolo, no solos. Just as I wanted. Then the flute lessons stopped. They stopped because the dreams for teaching music died.... She refused to keep seeing me if I wasn't going to college for music. That year I was told I wasn't smart enough for scholarships, didn't qualify for grants, and despite working almost full time hours and doing school full time, no way I could pay for college by myself so music education died.... I couldn't afford it... I cried, which I know you saw.... I cried because I failed. I failed to dream good enough, to be good enough, to keep my promise...... Even when I did start college, it was hard to keep up. Working full time hours, keeping up with all the chores/housework I was responsible for both living at home and when I got on my own and full time college was rough. I know you were proud when I graduated community college though, especially top third of all of that community college combined campuses. 

See, I wasn't as stupid as everyone made me out to be. I would have loved to see all of those who said I would be a nobody, dead, prison, psych wards and more to do what I did AND survive all I did. Though, you wouldn't have agreed to me doing that..... The huge desire to throw that in the faces of soooo many would have been so sweet tasting.....

After high school, the Armstrong flute mostly collected dust for nearly six years. Then came playing at church. First Sunday there I was sooooo nervous, despite not being the only flute player there. At one time for a while there was four of us. I gave up the piccolo forever after a mishap of attempting to play a piccolo part for one of the other flautists because she was late. That happened after I'd been in around a year. The embarrassment of that and being called out, I chickened out and quit that. Before that, it had been several years since I picked that piccolo of mine up. I could have used a pep talk that rehearsal day from you..... It wasn't long before I became the only flute player on stage most Sunday's. I learned to embrace it, because I could adjust the sheet music to sound good yet not overpowered by the small ensemble size. Sometimes I'm the only flute player up there and sometimes I'm not, but usually it's just me. I had seasons when I was out, especially time after the kids were born but I've stuck with it. 13 years completed there now and still going. Though I admit I still get timid with solo stuff. I also admit I still am bothered by how a former player's daughter told mine not long ago that they left the stage because of how bad I suck playing. That made me somewhat want to leave honestly. That was another day I wish I could have called you. Another pep talk..... Assurance that my years of service wasn't a waste, even though it's praise and worship music, it was obvious to me that I wasn't good enough.

Almost a decade after high school and I was able to replace the Armstrong flute I bought myself, and join community band as well. It took me a little getting used to the Yahama flute I upgraded to but I did it. The first night in community band, I was so nervous, last chair or not, I was. I had not played with a group like this in years.... I've been in that band just over a decade now. Hard to believe I started in there that long ago.... Still second to last chair with the flute but I don't care. I learned long ago that first, second or third part isn't as big of a deal as it is just getting to play and enjoy music.

It took a while for what you told me many years ago to come to fruition but you were right. It's not about how good you are, but how good you feel playing.

Now you know not long ago I picked up the clarinet. It's what I always wanted to learn, though I'm not going to waste my flute years either. I've been getting lessons since May, even despite the medical world and adulting, I've practiced a lot though I know I'm slow to learn.... Slow to catch on to not so much how it all works but getting the brain and fingers to work as they should, but also in getting the tone out well in all ranges, especially the upper on that. That part is harder than the flute for me. As most everyone ever told me all my life that I'm stupid, I know I'm probably slower than others to learn, yet once I do, I don't forget. And I do have one thing many parents don't. I know much more about the neuroscience world than they do and yet this "stupid" brain learned it, and more. With the clarinet, I have been determined to make it work, just like I did the flute. The pinnacle of my flute career so to speak may have been my senior year of high school, state solo awards and also the chair placement I wanted, it wasn't over despite not being able to do college for music education. Besides,  I figured also that if I was going to be told that I suck, after 25 years on one instrument, and a couple of months into learning the clarinet anyway, I'll challenge that by learning what I originally wanted, and at least if I'll suck, it'll be because of how new I am at it. Game on! Started the end of May, spent almost a month total, with a week break at Children's with your great grandson. Really, I didn't start till this last July. I have been really playing only six months. Started on an student Artley, using a Noblet Stubbins intermediate clarinet now. Funny how my first flute and clarinet both were Artley's... Last night I took a leap of faith, with high anxiety to come with it, and for the first time as I begin my 11th year of being in community band, I didn't sit with the flutes, I sat with the clarinets. That felt really odd.... And scary..... Grandpa, it was like the first day of band again, and I knew it wouldn't go great but I had to do it. I can play by myself or duets all I want, those help but ensemble experience doesn't come with just being at home, you would remind me of that. I got a lot of practice to do but at least the one teaching me is sitting by me and can forgive my anxiety and squeaks due to it.... At least she knows I don't stink as bad usually as I did last night.... haha Hard to believe she puts up with me...... I had a hard time getting to sleep last night, and wished I could call you. I needed another pep talk..... In time I know I'll get better and I'll start playing the band music well. Hopefully by the concert for this. It'll be weird having my name with the clarinets, not the flutes though. I may be last chair but I don't care.... I am determined enough to make this work. And at least this time with a new instrument, behind everyone else's skill level, myself nor my children are told that I suck and shouldn't be there or that they left because of how bad I suck. For that, I'm thankful. Grace is good. So are earplugs for those around me the next few weeks as I adjust. 😂

As much as I still wish I could see you and hear you, I know since you died, you've not missed any concert of mine, any church service I've played in nor those "big" performances. I know you would tell me to keep going, to keep practicing and to play, not for everyone else but for myself. And that I will..... May I teach my children the same. They are also the reason I keep going with music. What am I teaching them if I give up, or if I don't take a chance?

Thank you grandpa for never giving up on me. Thank you for being a rare one who didn't. I will see you again. I look forward to the day I play in Heaven."

“Nothing in this world can take the place of persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan Press On! has solved and always will solve the problems of the human race.”

~ President Calvin Coolidge ~

I could see him saying this too. He has similarly.  

I play now not for myself, not for the community but to keep his memory alive. Because overall I enjoy it still. And to keep the tradition going. I only wish he was here to see how far I've come and also how far along his great granddaughter has gotten already. And honestly, sometimes I could still use the pep talks he used to give me.... Especially as I venture out in the unknown with the music world..... 

~ Special Momma ~

We've gotta do better!

credit

The following was in my Facebook newsfeed the other day and I had to share. I also added my own comments to it. I will also talk about the medical world here. Here's the original post.

Worth the read... For everyone especially parents and coaches

In Nashville, Tennessee, during the first week of January, 1996, more than 4,000 baseball coaches descended upon the Opryland Hotel for the 52nd annual ABCA convention.

While I waited in line to register with the hotel staff, I heard other more veteran coaches rumbling about the lineup of speakers scheduled to present during the weekend. One name, in particular, kept resurfacing, always with the same sentiment — “John Scolinos is here? Oh man, worth every penny of my airfare.”

Who the heck is John Scolinos, I wondered. Well, in 1996 Coach Scolinos was 78 years old and five years retired from a college coaching career that began in 1948. No matter, I was just happy to be there.

He shuffled to the stage to an impressive standing ovation, wearing dark polyester pants, a light blue shirt, and a string around his neck from which home plate hung — a full-sized, stark-white home plate. Pointed side down.

Seriously, I wondered, who in the hell is this guy?

After speaking for twenty-five minutes, not once mentioning the prop hanging around his neck, Coach Scolinos appeared to notice the snickering among some of the coaches. Even those who knew Coach Scolinos had to wonder exactly where he was going with this, or if he had simply forgotten about home plate since he’d gotten on stage.

Then, finally …

“You’re probably all wondering why I’m wearing home plate around my neck. Or maybe you think I escaped from Camarillo State Hospital,” he said, his voice growing irascible. I laughed along with the others, acknowledging the possibility.

“No,” he continued, “I may be old, but I’m not crazy. The reason I stand before you today is to share with you baseball people what I’ve learned in my life, what I’ve learned about home plate in my 78 years.”

Several hands went up when Scolinos asked how many Little League coaches were in the room. “Do you know how wide home plate is in Little League?” After a pause, someone offered, “Seventeen inches,” more question than answer.

“That’s right,” he said. “How about in Babe Ruth? Any Babe Ruth coaches in the house?”

Another long pause.

“Seventeen inches?”came a guess from another reluctant coach.

“That’s right,” said Scolinos. “Now, how many high school coaches do we have in the room?” Hundreds of hands shot up, as the pattern began to appear. “How wide is home plate in high school baseball?”

“Seventeen inches,” they said, sounding more confident.

“You’re right!” Scolinos barked. “And you college coaches, how wide is home plate in college?”

“Seventeen inches!” we said, in unison.

“Any Minor League coaches here? How wide is home plate in pro ball?”

“Seventeen inches!”

“RIGHT! And in the Major Leagues, how wide home plate is in the Major Leagues?”

“Seventeen inches!”

“SEV-EN-TEEN INCHES!” he confirmed, his voice bellowing off the walls.

“And what do they do with a a Big League pitcher who can’t throw the ball over these seventeen inches?” Pause. “They send him to Pocatello!” he hollered, drawing raucous laughter.

“What they don’t do is this: they don’t say, ‘Ah, that’s okay, Bobby. You can’t hit a seventeen-inch target? We’ll make it eighteen inches, or nineteen inches. We’ll make it twenty inches so you have a better chance of throwing the ball over it. If you can’t hit that, let us know so we can make it wider still, say twenty-five inches.’”

Pause.

“Coaches …”

Pause.

” … what do we do when our best player shows up late to practice? What do we do if he violates curfew? What if he uses drugs? Do we hold him accountable? Or do we change the rules to fit him? Do we widen home plate?

The chuckles gradually faded as four thousand coaches grew quiet, the fog lifting as the old coach’s message began to unfold.

Then he turned the plate toward himself and, using a Sharpie, began to draw something. When he turned it toward the crowd, point up, a house was revealed, complete with a freshly drawn door and two windows. “This is the problem in our homes today. With our marriages, with the way we parent our kids. With our discipline. We don’t teach accountability to our kids, and there is no consequence for failing to meet standards. We widen the plate!”

Pause.
Then, to the point at the top of the house he added a small American flag.

“This is the problem in our schools today. The quality of our education is going downhill fast and teachers have been stripped of the tools they need to be successful….to educate and discipline our young people. We are allowing others to widen home plate! Where is that getting us?”

“And this is the problem in the Church, where powerful people in positions of authority have taken advantage of young children, only to have such an atrocity swept under the rug for years. Our church leaders are widening home plate!”

I was amazed. At a baseball convention where I expected to learn something about curveballs and bunting and how to run better practices, I had learned something far more valuable. From an old man with home plate strung around his neck, I had learned something about life, about myself, about my own weaknesses and about my responsibilities as a leader. I had to hold myself and others accountable to that which I knew to be right, lest our families, our faith, and our society continue down an undesirable path.

“If I am lucky,” Coach Scolinos concluded, “you will remember one thing from this old coach today. It is this: if we fail to hold ourselves to a higher standard, a standard of what we know to be right; if we fail to hold our spouses and our children to the same standards, if we are unwilling or unable to provide a consequence when they do not meet the standard; and if our schools and churches and our government fail to hold themselves accountable to those they serve, there is but one thing to look forward to …”

With that, he held home plate in front of his chest, turned it around, and revealed its dark black backside.

“… dark days ahead.”

Coach Scolinos died in 2009 at the age of 91, but not before touching the lives of hundreds of players and coaches, including mine. Meeting him at my first ABCA convention kept me returning year after year, looking for similar wisdom and inspiration from other coaches. He is the best clinic speaker the ABCA has ever known because he was so much more than a baseball coach.
His message was clear: “Coaches, keep your players — no matter how good they are — your own children, and most of all, keep yourself at seventeen inches.
source

I added when I shared it: Something for everyone to think about. Sports has nothing to do with it but events our kids participate in often show not how good they are but how good they are not. It shows what they have been taught, not in the skill but in the attitude.

Isolating people just because they aren't like you is part of the problem. Putting labels on people is part of the problem. Treating those kids around you differently than you would your own kids is part of the problem. Teaching your children that Varsity is better than JV is part of the problem. Teaching your children that making those that look or act different than them an outcast is part of the problem. For silencing the ones who speak out, you either crush their spirit or make them fight harder. For calling children a liar and or they deserved it when they tell you they are being bullied, abused or mistreated. For punishing the victim but not the perpetrator and or making excuses for what they did to others. For looking at the poor parent in the stands at the football game and snickering to your friends because they don't look or act like you. For telling the parent of a child with a disability they don't belong and neither does their "retard" child. (I hate that word by the way but it's also been used against my kids....) For telling the parent of a child with a chronic medical crisis that they asked for it and to fend for themselves, while you donate to a well known patron fighting cancer or any other illness. For those who see a need in the community but refuses to help unless they get something in return. For those who see a person in need but turn the other cheek because the person that is in need, they don't like, or is whatever label(s) you want to put on them. For the kids who encourage bullying and the parents who let them. For the first ones to be at the church pews on Sunday yet during the week teach their kids through action that porn and or infidelity is okay. For the ones who sit in the pews on Sunday but during the week single out people because they are different. For those who say they help the poor but ignore the homeless. For those who act all nice to people in church yet gossip about them to their friends or on social media. For those who preach Jesus loves you but doesn't love their neighbor (EVERYONE ELSE!) as God also commanded. For those who tell others who serve that they are no good yet refuse to help. For those who tell the bereaved to "get over it" yet they won't let go the hatred of the driver who cut them off at Wal-Mart. YOU doing any of that is part of the problem.

I could go on and on......

Yet we wonder why kids are cruel. It's because many parents teach them either to be cruel or do nothing to stop it.

Think on that.

Within comments on one of the pages I shared this to, I added this. (Condensed comments)

This was not written because of how people have or have not treated me in my life, this was written because I know many who have had it happen to them. Some local, many not. This was a reminder that how we treat others sets the example for how our kids treat others as well, and even if we don't teach our kids through actions and behaviors like that, doing nothing teaches them that it's okay also.

And yes, some of those very statements have been said to or about me/my kids. Some were locals and some were family. However, I'm okay honestly. This wasn't written for or about me, it was written as a reminder for all of us to think about how we treat others and the examples we show to others but especially to our children. I don't agree with participation trophies nor everyone playing each sport just because they want to. Skill has to be there. I can't sing so I won't try to join choir. *cringe* I can't run fast so I won't try track and field. It would leave for some great AFV clips though! 🤣😂 My comment about varsity being better than JV was part of the point in how some parents tell their kids that just because someone is or isn't on a team or type of team doesn't make them any better or any worse than someone not on a team.

I do agree as well with the original article. Not everyone can make the team but on a team or not shouldn't matter how anyone treats anyone else and oftentimes people act like it does. The outcast loner in high school is no better and no worse than the varsity quarterback who has won state three years in a row. A musician who has only played for a year doesn't get rewarded with first chair if another player has been playing for three years and does better than the first year player does. That's not how band works either. Never has. That shouldn't change either. However we shouldn't treat them any less than we would anyone else in the band. First chair, last chair, best on the team, worst on the team it all doesn't matter. All deserve love and respect and to be heard. I didn't say all rewarded the same. Absolutely not. You won't reward an F student right? So why reward someone who doesn't make the cut? Yet that doesn't make them any worse or better than anyone else.

A working mom is no worse or better than the one who stays at home, yet many judge and or question the motives of both. We judge and or get judged for how many kids we have, how much money we make, the car we have or don't have, who we know and are related to, how long one has lived in a small town vs being born there or even living there at all. We judge each other for how good our makeup is or isn't, who our friends are or aren't along with how many we have, and so much more. That's my point. We as humans gotta just quit the labels, quit the excuses, treat others as God says we should. Love and help others without complaint, without expecting stuff back without bias or judgment on who or what a person is. Yet we don't. That was my whole point. We all gotta do better. I wish bad apples didn't exist, you know? They ruin the crop and make it all look bad. That's why I do what I do. That's why I say what I do, liked for it or not. To make a point. To show people what is going on around them. To show them that life is hard but how they treat others can also make a huge difference. You know I tried to take my life when I was 12 because of how others treated me? Because of how unloved I was? Because of how unwanted I was? Because I was an outcast? Because I was forced into silence? Because I was blamed? Because the victim was always punished. Not anymore. I vowed at 18 I would stand tall, stand strong and stand for others who can't. That's why I am the way I am. That's why I will always fight. That's why I don't care who gets in my way, I will always fight for my kids, even if I'm the only one because at least they will be able to say someone did. They will never have to see the hell I did. They will never have to feel the hell I did. They will never have to know what that was like. They will always be able to stand there and say that no matter what, someone had their back. They will not have to claw their way back up alone. They will never have to figure it out alone. They will never have to feel like they are unloved or unwanted. I will make sure of that. That is why I speak out, call out injustice, loud and proud. That way if nobody else will stand for them, at least someone will. And you know what? I know I'm not alone. I have read many posts from people like me, survivors, special needs parents, and honestly a little of both and or been told from others who struggle with stuff like me, even a few locals. Their stories, my life, their souls, they inspire me. My posts on social media, including my Blogger page isn't just speaking for myself. I have been told stories, read posts and been messaged about what I have shared and how I have helped others because I spoke out. Not just locals around here either but people across the country. Why? Because I spoke up and because I refused to stand down. I have been told by a few that I saved them from suicide. No joke.... By sharing pieces of my story, by sharing my thoughts, by sharing statistics, by talking about the stuff people don't want to hear. I have helped others. And if that means people look at me bad including some family, because they have, then so be it because at least I know I have made a difference.

What I am saying here isn't towards anyone in particular, this is for anyone who wants to read it because it's the truth. Ugly, beautiful or in the middle, it's the truth.

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On the flip side, as many as I know I've helped with my posts, stats, stories, I've also been told by a few that I need psych help. That I need meds and therapy. Well, first off, are they going to pay for it? Easily $30 a session and I'm not paying for that. Meds I might consider but not if the side effects are bad. Psych help? We all need a little help! Why do you think many have a hobby? I write (obviously) but I also research, listen to music and play music. My daughter has been told that I suck at music but too bad, those people suck for telling my kid that I do. What's that teaching her about her journey with music? Besides, if I "sucked" so bad, why am I still asked to participate in services and also community music? Good thing I had a good life lesson for her in that discussion when she told me someone at church told her that. My older kid wants to eventually play on stage and community band but what if people start talking about her behind her back because she doesn't play "good enough"? Will she have the confidence to tell people to kiss her grits and keep going anyway? (My life experiences helped in that lesson because I also proved that I didn't give up when I easily could have with music, both with the flute early on, recent years and the clarinet the last seven months.) Well, I never could major in music education like I wanted because I couldn't afford a good college, I quit playing entirely for several years before picking my horn up again, I also now have priorities beyond being a "perfect" musician, including being a wife, mom and advocate so there you go. I told her to stand tall and keep on playing because as long as she does her best and never stops learning anything in life, that's all that matters.

So you know, regardless of how someone serves in their community, don't tell them "you suck" because maybe it's you that sucks, not them.

Anyway.....

I don't get out much beyond appointments and church stuff and overall that's fine. I used to be unhappy with that but not in recent months. I'm embracing it more. Enjoying the solitude more. I'm not the extrovert I once was. Yeah, life has changed me but change isn't always bad. (It's a miracle I actually said something like that!) haha! It saves me the drama, the stupid gossip women do and it also saves me the looks of eyes glazed over like glazed donuts when I get asked about my son and the only answer they wanted was "good".

I went from a turbulent, troubled sometimes chaotic kid to a warrior who will not stand down during a fight. I may lose some fights but I refuse to lose the war. I refuse to just give up. If I give up, what does that teach my kids? What will that teach those who are just starting their journey into the medical world? To the one who just got told by a doctor that their child has ____ and they are devastated? What will giving up teach them? What will that teach the one or the parent/teacher of one who is struggling with depression, anxiety or PTSD or any other mental health diagnosis?

To give up!

**

Never give up! Never surrender!!

**

Now, in the realm of the medical world, it too is ugly and beautiful, sometimes both, usually somewhere in the middle and sometimes all over the place.

Consider the words from a dear distant state friend Sharon. She's a foster mom and also a special needs momma for multiple kids, one of whom is saving her a seat in Heaven. This post is an older one but still true.

"As parents of special/medical needs kiddos we walk this fine line-between seeking professional help for our children and stepping over the imaginary line the medical world has drawn.

If we ask/question the choices
If we 'know' to much
If we don't act stupid and uninformed
If we just plain ole piss some professional off for whatever reason
We suddenly become thrown into the thralls of investigations,accusations and the 'look'
We fight for our children, we speak for them,we question ,we demand better fairer treatment.
We should never have to be afraid or worried that if we say the wrong thing,ask the wrong thing,know more than the intern and nurses about our child-our motives our hearts will be thrown under the bus.

To many of us have had this experience, to many of us have had our lives turned upside down due to some (hopefully) well meaning professional - It simply boggles my mind that we are given so much grief simply because we are advocating for our children. News Flash here - we can suggest all day, we can disagree till the moon turns blue - BUT IN THE END ITS THE DOCTORS THAT MAKE THE FINAL CHOICE. We are good but we aren't that good!
SEE THIS IS THE DAMAGE THAT THE CO-LIFERS HAVE CAUSED

I have a dear friend who at this very moment is going thru such turmoil simply due to some nurse questioning the medical choices she has made I ask that you all pray for her and her kiddos-that this is cleared up promptly and fairly - and the scars that will be left wont be to deep. Because there will be emotional scars. And for all of us that are parents to the special ones-may we never be afraid to advocate and speak out."

I am personally not afraid to speak out (obviously! ha!) yet sometimes I do fear what will be written or spoken of me when I do. I don't mean what others think, they can kiss my grits with that, what I mean is the labels in the sense of how will that carry over to my kids when they age out and are on their own? When the adult doctors start treating them and they see the records? When they hear my at that point adult children advocate for themselves. Will I have done good enough in teaching them what to tell the world? How to handle the world? Will they know enough about how to fight? Will they have enough knowledge about their diagnoses to teach the world as I have taught them and the world about them? Will they seek out people who want to help them and ignore the haters and the uncaring? Will they ignore some of the doctors who will call them "micromanagers" or "Too worried" or "Overthinking" type stuff? Or when the doctor tells them that as long as a pill works, the cause(s) and diagnoses for needing a medication doesn't matter? (Yeah, I've been told that too about my daughter.) Will they learn to move on and keep finding doctors who will listen when others give up and quit trying?

I sure hope so..... In the meantime, I gotta keep fighting for them, keep showing them how to fight for themselves for when they have no choice then but to. For when I'm no longer here and all they have is each other.......

A fellow medical mom I have followed for a few years now shared some lyrics in a recent post. I had not heard that hymn till she shared it. These lyrics stood out though, for her and also for me. Even if you aren't religious, the lyrics are so cathartic.... 

I'm weary with my former toil,

Here I will sit and rest a while:

Under the shadow I will be,

Of Jesus Christ, the apple tree. 

This fruit doth make my soul to thrive,

It keeps my dying faith alive;

Which makes my soul in haste to be

With Jesus Christ, the apple tree.

I am weary, I have always been weary.... I'm a survivor and a warrior. I've always had to be on guard, waiting for or in battle. That's been me as long as I can remember and my earliest memory is at age two. Admitting that doesn't mean I need "psych help" it just means it's the truth and in a world where there is so much chaos and busy I know almost everyone is weary, tired, broken, worn out, and much more....

It's even more in the medical world, filled with miracles but also much uncertainty. And sometimes it's filled with devastation, sorrow and storms. The one who posted those lyrics in her blog is the momma of a miracle, yet even her miracle likes to throw monkey wrenches. He's a stinker!

Yet there are also these words that another medical momma shared with me this week. It's so nice having her around, because she can handle my fire where many can't. She's just as much of a warrior as I am, yet I swear she has the wisdom of an old patriarch..... You know who you are. This was shared from a Type 1 Diabetes page she's on.

"Have you ever been so tired that the taste of cheap coffee seems like a blessing?

Have you, looking into the mirror, not been able to remember the last time you showered or even brushed your hair?

Have you ever cried in a doctor’s office, finally letting go of all that stress you’ve been carrying so long?

The medical mama has.

She’s held her child as they’ve screamed in pain from an IV or a catheter.

She has comforted her baby through the metal rails of a hospital crib.

She has found a way to smile in the face of a child who has endured more medical interventions than the average grown man.

When it comes to medical jargon, she has the vocabulary of a tenured doctor. She has spent the few moments she has to herself researching her child’s condition.

She is tired, but not weak.

She has broken down, but still keeps pushing.

She has every detail of her baby’s life memorized, and unfortunately, that life has been full of more than just milestones.

Oh, but the milestones. Maybe they’re few and far between, but they are moments you will see such ease in that mama. She will recant the details perfectly, as she’s played out the moments over and over in her mind. She has a thousand videos and pictures of her baby to prove they are perfectly made, even if their diagnosis says otherwise.

You have to understand, the medical mom sees things a bit differently than the average mom. They get to believe in magic, in miracles and in prayer because they have given birth to the proof it’s real. Regardless of what anyone could ever tell her, she has watched her child break every rule and negative expectation. Her baby is heaven-made.

The florescent hospital lights and multiple cords have become the landscape of her motherhood. The sound of beeping machines is the soundtrack. She has become defined by the hard edges of hospital walls and the notches in medicine syringes.

She has used every bit of patience on her child and their needs, so she appears to be short-tempered and lacking social skills.

Rare disease information
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Her days are full of chatting with therapists or other medical moms, as they are the support system that keeps her standing.

Her child speaks to her in their own special language, and no one will advocate for that baby like she will

She is a medical mama, and she’s proud of that fact, but no one will ever understand it unless they’ve lived it - Anonymous"



And finally, this one from The Mighty:


What Love Is When You Parent Kids With Disabilities

Love waits in countless waiting rooms of countless doctors for appointments and therapies.
Love smiles at the nurses because you need them on your side.
Love does not dishonor the knowledge of specialists, it does not point out to the Doctor that you know all the “doctor-ease” they whisper to interns.
Love spends sleepless nights researching.
Love is a medical advocate.
Love remains calm when a nurse is digging around looking for a good IV vein.
Love holds a screaming child down for procedures.
Love is bold enough to say “stop.”
Love can recite endless lists of surgeries, medications and dosages.
Love knows how to smile so that the child isn’t scared.
Love cries and screams into a pillow in a hospital bathroom.
Love knows the wrongdoings but uses them to be an empowered advocate.
Love does not delight in a broken school system but rejoices in an IEP that is followed by all on the team. Love makes every efforts to set the child up for success. It knows the law and special education codes.
Love protects, always trusts its instincts, holds to hope of a good day’s report, holds educators responsible.
Love pushes past those who can’t see potential.
Love sees potential.
Love never fails because it always tries.
When faced with doctors, teachers, therapist and experts that look into a still not lived future, Love hears them say “never” but “never,” will be silenced.
Love knows that “different” is not a negative term.
Love knows that different is beautiful.
Where there are whispers, pointing and staring in public, they will be ignored — where there is knowledge and a future to be found, Love will travel and save to make it happen​.
Love is happy to sacrifice.
Love is a force.
Love is a mother.

~ MaryEllen Pollard ~


As I shared in my last blog post here about the neuro world, there are things I never thought I would learn. There are stories from others I never thought I would hear. There are countless families not just in the neuro world but in the medical world as a whole who feel much of what I do, yet too struggle with not just the weight of what that world is but the lack of understanding, compassion and friendships from others. Yet I never thought I'd memorize the stuff I have and can recite it all from memory.... To the point that I even surprise nurses that I know and remember so much.....

The main thing I want my children to know, is that I loved them. I fought for them.... I fought for others who didn't have a voice, who didn't have someone standing there to fight for them. For those who get bashed on social media, even myself, I fought for. I spoke for, I took flak for. Why? Because we need to be taught again love and respect..... We need to be taught again how to have each other's back regardless of anything else. We need to be taught again to instead of throwing stones like the crowd, to have compassion and a heart. To do what Jesus did that day he told the crowd to stop and the first to never have sinned can cast the next stone. Guess what? The crowd walked away and quit throwing.

That's how one leads to Christ. With love, compassion, understanding, forgiveness and being willing to listen.

We need to do the same....

So, let's show more love, let's see people, let's see their souls and not the shell. Let's see and learn about people and why they are the way they are. Let's do better..... You don't have to know exactly what someone is facing to be there for them, to stand with them, to fight along side them. You will learn quickly enough what it takes to be a warrior and when you do, you will find better understanding of who we really are. "But that person...." So what!!! Put yourself in danger with a criminal? No. BUT if all that person is is someone who looks different, talks different, poor, rich, outsider, insider, outcast, popular, it doesn't matter. Go to the prisons and do outreach, go to the homeless shelters, go to the orphanages, the foster homes. Go to your schools, your churches, hospitals, recovery groups, youth groups, nursing homes, seek them out. Observe. You'll learn real quick who is alone, who the outcast is, who all is crying out yet nobody to hear them.

LOOK INTO THEIR SOUL!

The place where most will not go, where most will not hear, will most would ignore, where most would just rather not be bothered, GO! Even if that is through social media, or telling your story. Be prepared to hear a lot of heartbreak, disappointment, anger, anxiety, sadness, and more.

The fastest way to move through your own troubles, stresses, and pain is to reach out and help someone.

Remember this Diana Ross song: “Reach out and touch
Somebody's hand,
Make this world a better place if you can......
Take a little time out of your busy day,
To give encouragement to someone who's lost the way.”

So instead of excluding people or just pretending they don't exist, let's give people a chance. None of us will shine at everything. That's not how it works. However, where we are given the chance to at least try, when we are encouraged to try, we have a chance to know where we will shine at. Cheer people on when they triumph. Pick them up when they come crashing down. AND even more, do that for those you don't like or don't know either. I don't care who or what they have done. Just do it! This world would be a better place for it if we could just learn a few lessons here.



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Maybe by doing that, someone will talk about how you changed their life.


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Let's do better!

Give love. Be love.

Especially because it's Christmas time and many have nobody.

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~ Special Momma ~