“But rains pour down upon us, storm clouds darken the skies and we get lost in the storm. Have you been there? Wandering in the darkness, crying out only to be greeted with utter silence?"

~ Lesley Hitchens ~



"God puts rainbows in the clouds so that each of us in the dreariest and most dreaded moments can see a possibility of hope.”

~ Maya Angelou ~

Monday, May 20, 2019

Marathon Training - Frustrations

So many peaks and valleys in this training journey. Today it's a valley of frustration and impatience. Yeah I admit it..... You've been warned, this post isn't sunshine.... 






I didn't expect to be participating in this coming weekend's 5k but I am!

YEAH!!



I'm not pushing my son though because I'm not taking him from the one who is. I'll be in the 5k and he'll ride in the 10k. At least this one is a free event for Ainsley's Angels athletes. Hopefully I'll finish before he does. I'm mostly walking this one..... Though I hoped to be doing more running by now.

Part of my mood though is this: Why does everything have to be about money as a start? Everything is always too expensive despite doing the best I can with what I have. Right, I should have thought about that before doing this right? Yeah I got told that. I shouldn't bother asking about his chariot because that's being a lazy leech and I either need to get it myself or quit doing this till I can and then maybe pick it back up. None of this was said
by my spouse by the way. 


What happened to supporting others around us? Oh wait, asking for help isn't allowed right? Because anyone who needs help is just lazy and or incapable of doing it themselves? Or does that just apply to me and nobody else around? Double standards much? What happened to community?

Why can't I just get my right lower side to quit being a jerk? Blisters which aren't a huge issue yet still annoying to knee twinges/slight pain once in a while with my fears of a flareup again, like it's kinda hurting tonight (I blame the weather!) to like stretched occasional thigh pain at the tendon inside the right one (just aches. No injury) I had forgotten I had injured that right knee as part of a job hazard back in 2005. So why all the problems now? Why simply did it decide to start just from going under a tree? Because I'm much more mobile than I have been in honestly years?

Why can't I run much of anything yet? Oh wow a whole 10th of a mile max! What about the 5k?

I know I'm fat and overweight but holy crap, can't I just be decent at this yet?

I've lost about 10 pounds. Yeay! Yet then there's the cost of replacing jeans soon. Yeay, more money spent....

Two events a year where I've already heard groans at how much. 30+80 for the two roughly. If I hear about being a registered athlete pushing my son at only two events then I'm even more glad others will push him with the other ones as I'm sidelined due to costs. Yet then what's the point in all of this? Is all of it really worth all of this training if in the end it's going to be "too expensive for our budget" anyway?? Still better than even a few months of a gym!!! If I really wanted, I could just do the gym membership and do weight training with the treadmills without having to worry about weather at all! Yet I don't because of cost. I got leggings on $3 clearance for this. I got shorts secondhand at Savers. All to keep costs down. I got my shoes on clearance even!

Yet I'm a lazy leech who mooches off my spouse. Get real!

Yet the whole intent honestly for this was so I could push my son at events. He wants me to! Also so I could honestly also get healthier. So why the struggles with it?

Why the struggle to take it up a notch?
Why the struggle with my old, fat joints? Just the one knee even!! That's the only problem!!!
Why the struggle over costs when I'm trying to do this as inexpensively as I can do it?
Why the struggle to get to the point of running much of anything? Am I just doomed to walk and then finish last at any of these?
Is all of this in vain anyway?
Why does everything always boil down to money?


I'm training pretty much on my own doing the best with what I can do and can get yet it's just not good enough seems like.... Worse, I get told/reminded that yet again I'm not good enough. Just for asking for help or something that will help me in doing this.

If the critics wanna step up/in helping me do better than by all means keep talking, otherwise shut up already.

Today would make six completed weeks of training done with tomorrow being the start of week seven. (My math was wrong apparently!)

So why can't I just get better at all of this?
Can't I actually run yet without dying at 1/10th of a mile and or my knee threatening to be a jerk?


I blame it on being Monday......  My knee especially but also Monday along with the doubters/haters can just do this.












Thank you to all of those who have stood by me with this. Audra especially. I owe you a million times over!








~ Special Momma ~


Friday, May 17, 2019

Marathon Training - Phoenix Rising

Okay I'm not Jean Grey either. haha Having her powers as Jean Grey would be nice sometimes but I would not want her battle with Phoenix as well.

I saw where someone had shared an attempted suicide scar and wanted to know what to do with it as a way to remind herself what she had overcome. Someone mentioned a Phoenix as a way to show how she had risen from the ashes of what was to where she is now.

I loved that idea.

The Phoenix. They rise from their own ashes and they represent rebirth. The Phoenix is rising transformed and transmuted out of the flames of destruction. The Phoenix comes out of being trapped within and flies.







There's one song with Audiomachine called Phoenix Rising as well. It's a favorite! As you can probably guess I'm listening to that while writing. Music while writing feeds me.

The Phoenix is rising out from within me. It's amazing what honestly this training has been doing for me. Seriously!

You see these scars? Yeah my legs are covered in them. Age shows too.


 





I've thought about getting something done on both to signify what those scars told, what created them, and I don't mean the blade that did, but where I was. The darkest pit I had ever been in. Yet the years it took to climb out of that. To continue overcoming. To learn that giving up would mean those who hurt me would win. To learn that I am worth something. To learn that I could be loved. To learn that these battle scars would help me to handle the battle of the medical world. To battle the training I'm also in now.






Those who abused me did not win. The ones who should have loved me the most and didn't, did not destroy me. The depression at 11-14 did not win. The suicide attempt at 12 did not win. Ultimately that credit goes to God. The continued desire for death till summer of  turning 14 did not win. Marching band saved me first. It really did. To know what I was a part of and that the show would not do as well without even me in it meant something. I may have sucked at playing and marching that first year but we took State anyway. I accepted Christ days before this.

At the time I accepted Christ, I had the thought that it would automatically get better. Easier. I'd just stop the potty mouth I had, The hate in my heart for myself but also all who had hurt me. The mind war. It wasn't that simple. It's been a slow road. A lot of mountains and valleys to climb up and down. Good but a lot of not good in all of it. Just being real.

Salvation is amazing. Salvation brings my forever home. Yet salvation isn't an "get out of the jail of life" card either. We gotta keep working. Keep striving to heal. To go forward, even if it's just centimeters a day vs miles a day. Celebrate your Recovery from whatever still stands in our way.

Anger, anxiety and control issues are my current ones. (I get my four year chip this fall!)

Even now I still struggle with the consequences of my son's epilepsy and encephalomalacia and what it all means later. Would he be where he is now in needing as much support come kindergarten if what caused both had been handled properly in the first place? What was my part in that? Where did I fail? Was that a battle lost because I didn't outcry over the wait loud enough?


Overall I have gone quiet. Been quiet for close to a year now. I've mostly enjoyed it. I got quiet because I was tired of the hurt from others and honestly I had to regroup from the new diagnoses in the medical world... Been much better since starting training over six weeks ago now. My heart and mind were too dark a little while before that..... I've mostly enjoyed the time training now. Lets me outdoors, losing weight, toning up and know it's for a good cause.
Yet to go out there and have my goal to keep him in inclusion by joining the cause with Ainsley's Angels brings victory. That even though I couldn't stop what has happened, those ashes can still be turned into something good.

(May I also remember that the next MRI and whatnot that comes.....)

Sharing about inclusion, what Ainsley's Angels does and allow the joy on the riders faces to warm us up too, no matter what life has done to us.... Little did I know what my son's simple request during the half-marathon April 6th would do......

Nearly seven weeks later and I've lost near 10 pounds. People are noticing that what I'm doing is paying off. May what I'm doing help others too..... As a friend said to me a couple days ago "
I’m always amazed to hear what you have endured. You certainly are changing the script for not just your kids. Others are seeing and reading and changing even if they don’t say anything. Ripples are turning into waves."
Almost seven weeks of training now and today I began some running intervals in the walking. My fastest pace time walking I am at 14:40 per mile. I achieved that early this week. Today I began some interval running and my best distance with the running part was a tenth of a mile. Yeah..... I see that as lame honestly.....

BUT I did find some humor with it today.

In the voice of Jeff Foxworthy, "I can walk half-marathons three times in the almost seven weeks of training I've done but I can't run a tenth mile without dyin!" 🤣🤷

Yet the day I finish the 5k in a few months, it'll be another victory. Regardless of if I walk some of it or run all of it. It'll be a victory. When I finish a half-marathon in March it'll be a victory. I've already gotten a half-marathon distance done three times so far and my shortest time was just over four hours.

I can't wait to push my son with Ainsley's Angels and come out the finish line with victory! As long as I don't finish last....... Even if we don't get his chariot, I pray I find a way to always be able to keep training, even when he's with me because he is the inspiration. Ainsley's Angels may be the resource but my son is the inspiration. 

So much of the training has brought so much out. As a friend said, layer after layer just starts coming off. Sweat out all the crap that doesn't belong and in with the new. It doesn't change the challenges ahead but at least I feel like I'm actually achieving something that benefits more than just us here. Where I feel like I have value again beyond just having to fight battles over and over again.

Yet it's bought more courage and strength than I thought it would.  Seriously!!!


To come from the lowest I was at near 13 and ready to die, hoping God or whatever would just take me in my sleep, to trying to kill myself to where I am now twenty some years later is crazy. I have had to learn so much the hard way. Yet I have done it. I have been mostly alone in the war yet I have done it. I'm continuing to do it. The war will eventually be won. Yet I am no longer silent.






I talk freely when the time is needed now. I don't care who I offend or upset.

Silence was my enemy then. People were my enemy then. Not anymore.

Many may hate me or wish to silence me for being so outspoken about so much stuff now but that's why. Never again. Never again will silence and being quiet win. Never again will it.
I don't care what the topic is, silence wins nothing.
Sitting back and doing nothing wins nothing.
Refusing to let others be heard wins nothing.
Spewing hate at others because they see things differently wins nothing.


I'm thankful that my children have a better relationship and foundation with me than I ever did any anyone growing up. For all the things I do wrong, I know I'm doing better than what was ever shown to me.

With that in mind, keep this in mind as well.





The Phoenix is here and she is not going anywhere. The Phoenix has risen from ashes to soar above the world. The birth of the Phoenix was difficult but she is here. She is not cowering or sitting in silence ever again. She will declare victory. The war with many battles will not be easy to win but victory will ultimately prevail!





~ Special Momma ~

Sunday, May 12, 2019

Thoughts on a hot button topic

pinterest


I read a blog post the other night that really had me thinking about baby loss and where I stand on that. I will do my best to not get political here but this will talk about pro-life vs pro-choice. No I will not get detailed on abortion procedures or all of that. That's not for here. I can't do that...... This post will talk about statistics, baby loss, how people get treated regarding and will share my story.

You've been warned....







That blog post was about a pastor who has experienced the loss of a baby but had to make a really hard decision about it. You see, the baby they expected had a heartbeat, it moved, but "We were told that although our baby seemed to have healthy organs, there was nothing to contain those organs. Surgery was not an option. Our baby will certainly die during the birthing process."

Their sweet child had no chance to survive either way.... Birth would certainly have been more traumatic for both the family and the baby.

To be in that position, to know your child is alive and moving yet to face news like that is traumatic. It's hard. It's ugly and it's very difficult both emotionally and spiritually.

These were the options for this family and others who have had similar. "One option was to do nothing but wait until the pregnancy reaches full term and the baby is able to be born naturally or by C-section. However, because of the severity of the defect, we would be unable to hold our dead child, and may not want to see him or her. Our baby’s remains would be immediately prepared for a funeral service.

The second option was to terminate the pregnancy immediately. However, if we chose this option, it would be considered an abortion, and due to the political climate of the day, there was only one hospital in the state of Georgia which would perform an abortion this late in the pregnancy. He said that we could go to several clinics, but we may have to endure picket signs and possibly hecklers from religious groups opposed to abortion. The thought of my wife, who was still wiping tears from her eyes, being called a “murderer” or a “baby killer” by people claiming to follow Jesus, people who had no idea who we were, or what we were going through, made me furious. We were also told that although our child had a strong heartbeat, because of politics, for the record they would state that our child had “no viable heartbeat.”

Although the second option sounded dishonest, even illegal, it was obvious to us that it was the best, most compassionate option. I could not imagine Lori waiting three more months, feeling the baby move and kick, feeling another life inside of her, all the while knowing that this life will never have a chance. We scheduled an appointment for a procedure to end the pregnancy two days later."


He ended his post by saying this: "Life is not easy. Sometimes difficult decisions have to be made. Sometimes the solutions are not black and white. Sometimes those decisions are not between a clear good and a clear evil. Sometimes we are forced to choose the lesser of two evils. I want to live in a country where I am free to prayerfully make such difficult choices, especially choices that are so personal in nature, without any interference from the government."


Just imagine how much harder the healing would have been had they not been able to do this.... There are cases where I believe an abortion would be more humane.... It also depends on the type of procedure.

Yeah I said it. Judge me, go ahead. In a case like this, how would it be any different than a dog being euthanized because it has cancer or something else serious? Don't tell me that it's "just a dog so no comparison" either. I'm serious. What's really worse sometimes?

I am not saying I am pro-choice strictly either. In most situations I am against abortion. Yes, even in cases of disability most of the time. Part of it is my religious beliefs. Part of it stems from being told so much as a kid that I should have been aborted, I was worthless, I was worth poop, and so much more, I refused to believe in that being a cause to abort. I have a few other reasons overall as well. However, just because I am pro-life in most cases, that doesn't give me the right to judge and hold picket signs against those who have had an abortion.

That's just my feelings though. Yet what else would you have done in the story shared a bit ago? I can't blame them for going the way chosen......

Here are some statistics on why abortions are done.

According to the NIH, most abortions are done due to either relationship or financial reasons.......


  • Not financially prepared: 40 percent
  • Bad timing, not ready, or unplanned: 36 percent
  • Partner-related reasons (including the relationship is bad or new, she doesn't want to be a single mother, her partner is not supportive, does not want the baby, is abusive, or is the wrong guy): 31 percent
  • Need to focus on her other children: 29 percent
  • Not emotionally or mentally prepared: 19 percent
  • Interferes with educational or vocational plans: 20 percent
  • Health-related reasons (includes concern for her own health, the health of the fetus, use of prescription or non-prescription drugs, alcohol, or tobacco): 12 percent
  • Want a better life for a baby than she could provide: 12 percent
  • Not independent or mature enough for a baby: 7 percent
  • Influences from family or friends: 5 percent
  • Doesn't want a baby or to place the baby for adoption: 4 percent
  • Partner-related issues: 31 percent


As the pastor said as well however, not everything is black and white. So much goes into decisions that have to be made and there is never always an easy decision in matters like what they faced. I'll go more into that shortly but first I want to share our story.





A friend got me this after my baby loss.
It's a memorial ring.
Aquamarine is the birthstone.
I have hardly taken this off since 2013.


I am one in four who lost one early. Went for the first ultrasound and no heartbeat.  Silence......  First thing a family member said was "The Muenke was too strong in that one." A craniofacial syndrome had nothing to do with it. The HGC counts were falling as confirmation.  Thankfully when I had the D&C done at the surgery center there were no protesters but my mind was the worst one...... I chose the D&C because I didn't have the heart to have the inevitable happen at home.... Seeing "abortion" on the EOB was worse. I felt like I was a murderer or at least that my defective body was. It was hard..... 3-19-13 will always be in my memory......

Other than "I'm sorry" the other question I heard more than once was "what did you do to cause it?"




Absolutely nothing!



The other common thing I heard was "It was just a miscarriage. A bundle of cells not even looking human yet. What's the big deal?" Or "Well at least you lost it early instead of as a stillborn or it being so defective at birth that it was a toll on you and society."

No joke.... IT WAS A HUMAN!!! People who told me this stuff were people in the church...... Honest...... It stung too. That child would have been a living, breathing being just like anyone reading this is. That child, that "blob of cells" meant something to me. I was told those things by those who were pro-life......

Yet for weeks after, I listened to Hymn for the Missing by RED.



"Hymn For The Missing"

I tried to walk together
But the night was growing dark
Thought you were beside me
But I reached and you were gone
Sometimes I hear you calling
From some lost and distant shore
I hear you crying softly for the way it was before

Where are you now?
Are you lost?
Will I find you again?
Are you alone?
Are you afraid?
Are you searching for me?
Why did you go? I had to stay
Now I'm reaching for you
Will you wait? will you wait?
Will I see you again?

You took it with you when you left
These scars are just a trace
Now it wanders lost and wounded
This heart that I misplaced

Where are you now?
Are you lost?
Will I find you again?
Are you alone?
Are you afraid?
Are you searching for me?
Why did you go? I had to stay
Now I'm reaching for you
Will you wait? will you wait?
Will I see you again?



RED's new album had come out about the same time so Hold Me Now was also played a lot during that time. (This is the official video but redone by someone else. I couldn't find the one RED put up.)



"Hold Me Now"

Fall asleep to dreams of home,
Where the waves are crashing.
The only place I've ever known,
Now the future has me.
I see the fire in the sky,
See it all around me.
I said the past is dead, the life I had is gone.
Said I won't give up,
Until I see the sun

Hold me now,
'Til the fear is leaving,
I am barely breathing.

Waking up and letting go,
To the sound of angels.
Am I alive or just a ghost?
Haunted by my sorrows.
Hope is slipping through my hands,
Gravity is taking hold.
Said I'm not afraid, that I am brave enough.
I will not give up,
Until I see the sun.

Hold me now,
'Til the fear is leaving,
I am barely breathing.
Crying out,
These tired wings are falling,
I need you to catch me.

As I burn,
As I break,
I can't take it anymore.
I return to the place,
Where the water covers over everything.
Rescue me some how.

Hold me now,
'Til the fear is leaving,
I am barely breathing.
Crying out.
These tired wings are falling,
I need you to catch me.
Hold me now,
'Til the fear is leaving,
I am barely breathing.



That song I will never hear without thinking of the miscarriage. I wanted my baby back.... I blamed God. I blamed my defective body. I knew I could carry to term as my daughter was almost six at the time. Yet she didn't understand. She knew she was going to get a sibling then she didn't.... She knew enough to make something for her angel sibling and watch it go to heaven. We recorded that, and it took me everything to not get choked up recording it. Hymn for the Missing I know I tortured myself with during the weeks following yet when I heard it, I would just sit there singing the lyrics as if my angel was right there able to hear it. The tears would fall, my voice would crack but it was cathartic. I had heard it first a while before my miscarriage yet it brought all new meaning then.....

Now I can usually listen to it as I am now writing this and be okay. Still cathartic as ever but less outward emotions with it.

I got my positive pregnancy test with my son on what would have been my angel's due date. My angel would be five and a half now had I not lost him/her. Yet my son would not be here. Would we have had more after our angel had I carried him/her to term? I do not know. Yet life as I know it now it would definitely be different.

Baby loss is one of those topics few want to ever discuss. It's like it's taboo. Worse, the looks of either pity or even like you did something to cause it. Just let us talk about it! Listen to us! In the eyes of many I caused mine simply because I had a child born previously with an overall mild craniofacial condition. That's it!

Why? Why do we do this? Why the taboo? Why the doubts? Why the judgment?

Here's some statistics to show how common baby loss is.....



  • 1 in 4 women have had at least one miscarriage and or stillborn.
  • In the United States in 2006 there were nearly 26,000 "fetal deaths" (stillbirths) and about 19,000 babies died in their first month. In total, 1 out of 60 births resulted in stillbirth or neonatal death. When one takes into account the number of miscarriages, that number skyrockets to 1 out of 4 pregnancies. -S-
  • Stillbirth effects about 1% of all pregnancies, and each year about 24,000 babies are stillborn in the United States.1 That is about the same number of babies that die during the first year of life and it is more than 10 times as many deaths as the number that occur from Sudden Infant Death Syndrome (SIDS).2


Now, did you know this:

Nearly one in four U.S. women will choose to have an abortion before age 45. -S-


Do you know how many that equates to and how many people you know who may have had one? Either a baby loss or abortion.

Would you treat Jane Doe the same after learning she had an abortion at 15 due to parental demands? Jane had to choose the baby or get disowned by her family for not aborting. Yes, that seriously happens too..... Sometimes it's the other way around..... What about a case of incest against a child? That happens too.... I've seen the stories. I've seen the heartbreak and fear.

Now what about other cases of pregnancy? What about the stories like what the Banks faced? What would you do?


Sometimes when things go wrong in a pregnancy, the blame game is the worst thing you can do. Instead be there for them. Set differences aside and just be there. That simple.


No matter what diagnoses my kids have nor whatever their kids have I can't fathom the decisions that may or may not have to ever be made like what you may have and many others since have had to face. I may be considered pro-life but I also feel there are exceptions to that as sometimes there has to be. Most of all though, we need less judgment......





I only pray that those who have to make those hard decisions have a village who will love them through it.




On another angle....



Adults could learn this too....



I have read posts from other medical mommas who were told they should have aborted.... One I'm thinking of was told multiple times that her daughter was just a burden on society, a waste of space and so much more..... I've heard some of it, as have many, many others who have children with disabilities. Why?

What about those who become disabled later in life? Do some feel the same about them? Like Terri Schiavo? Like Alfie Evans? Like those who get refused a life saving organ transplant because they have a disability like Down Syndrome? Happened to a little girl named Annie.... Remember the story of Baby Doe in 1982? Did they ask for your judgment and sentence that ultimately got carried out? NO!

Ebenezer Scrooge felt that way too. He would rather have the burdens on society be rid of. Decrease the surplus population!

Why do we do that? Why do we tell mom's to abort or "get rid of" if the child isn't perfect yet scream pro-life at others? Why screech for foster parents to take in children yet then judge them for whatever baggage the kids came in with? For having any government assistance for those kids? Why even judge the kids in the middle of this? We question what moms did to cause the disability, miscarriage, stillbirth, loss at any age BUT if they don't do it all "the Christian way" and do adoption or keep the baby, the mom faces hell from the church? While at it, why do those who become single moms outside of marriage ostracized/judged but those who have been divorced/dating after/remarried treated well? Technically both are considered sin. Why the hypocrisy?

My big question to those who are pro-life is this: Why pro-life during pregnancy but after the baby is born, depending on who became the mom or what the baby has, they get treated like a leech on society and told such? Why support and love some but not others? Why cherry-pick?

Because it's convenient? Because it's easier than to love all? Because you know some can 100% support themselves and others can't? Because the mom and or child (ren) are on Medicaid or another government program? Because of popularity or who knows who? 

Did Jesus teach that?

Why?

Just stop with the excuses already! How will you be like Jesus truly was if you keep doing this? That's called legalism and it's what the Pharisees did! Jesus wasn't a fan of them. No wonder the world is laughing at us......

If you are going to claim you are pro-life, be pro-life in all stages of life, no matter who or what! Not just pregnancy either. Don't cherry-pick who you'll support in any method either. Be a doormat and be used? No. But don't assume all are going to use you or "fake" what's going on either. Don't NOT be like Jesus for selfish reasons.


All means all.
Is that not what Jesus taught?







If any of you have faced this, you aren't alone. I promise that..... I pray for you. Many love you even if those around you don't.

Let me know of those who don't feel loved, or feel outcast because I will be willing to listen, even if it is only through the cyber world. I challenge you to do the same.



Set aside your judgment and listen instead. May your judgment wash away and Jesus shine instead....





As Jarrett said at the end of his sermon today, "I KNOW, without a doubt, with absolute certainty that the risen Christ is here, and he is calling you and me, and if we answer this call, what a wonderful world this would be."



Indeed it would be a much warmer world, as God intended.
We need to listen more and speak less......







As Mother's Day today comes to a close I want to share this prayer that the same pastor I talked about earlier shared this morning. It's the perfect way to end this post.

"A Pastoral Prayer for Mother’s Day On May 11, 2015 By Jarrett Banks

The words of this pastoral prayer are adapted from a letter written by Amy Young to pastors.

Gracious God, Father and Mother of us all,

During this time, with our hearts and minds turned toward motherhood, we give you thanks for all those in our lives who possess the soul of a mother.

We give you thanks and celebrate with those in our community who have given birth this year, and we give thanks and anticipate with those in our community who are expecting a child.

We give thanks and pray for all mothers who are in the trenches with little ones every day and wear the badge of food stains and wearied bodies. And we pray for and mourn with those who have lost a child, for those who have experienced loss through accidents, sickness, DNCs, miscarriage, failed adoptions Or an unjust system. We pray for mothers who feel like their children are lost to drugs or other addictions.

We pray for and walk beside those who walk the hard path of infertility, fraught with pokes, prods, tears and disappointment. Forgive us when we say foolish things for we certainly do not mean to make this harder than it is.

We give you thanks for those who are foster moms, mentor moms, and spiritual moms – for this world so desperately needs them, perhaps more now than ever.

We give you thanks for and celebrate with mothers who have warm and close relationships with their children. And we pray for and sit with those mothers who have disappointment, heartache and distance with their children.

We pray for and grieve with all children who lost their mothers this year. And we pray for and acknowledge the experience of children everywhere who have experienced abuse at the hands of their mothers.

We pray for those who are single, yet long to be married and mothering their own children. We mourn that life has not turned out the way they have longed for it to be.

We pray for those who step-parent and walk with them on complex paths. And we pray for and grieve with all those who envisioned lavishing love on grandchildren, yet that dream is not to be.

We pray for, grieve with and rejoice alongside all those who will have emptier nests in the upcoming year.

We pray for those who placed children up for adoption. We ask you to bless them for their selflessness and comfort them as they hold that child in their heart.

O God, on this Mother’s Day, we pray that you help us to walk with all mothers, for mothering is not for the faint of heart, and on this day, we have real warriors in our midst."









~ Special Momma ~

Wednesday, May 8, 2019

Marathon training - Cost


“Telling a child that something that matters to them isn't important doesn't convince them it doesn't matter. It just convinces them that it doesn't matter to you and often makes them feel like they don't matter, either. Remember, caring about the little things that matter to little people creates BIG connections.”
L.R.Knost


And that quote is one reason I'm doing this. One reason why I try no matter what I'm in the middle of to have my children know that they matter. I mattered to so few growing up and untrue or not, I still struggle with mattering to anyone now. Though actions always speak louder than words...... As I've said in a few past posts....





Honestly.....

Now onto the topic of this post............. My brain I swear!




Runners be like:




Event planners be like:



I think those who put together running/walking events literally do this. haha No seriously! (It takes a lot of time, money and work to put those things together!)

I'm still glad I'm doing this. Yet I'm starting to see all that is against me. $60+ shoes vs my standard $20 Walmart everyday ones as a start. My monthly "allowance" that allows extra that I want spending is "in debt" from this for the coming months now already. At least five months. Shoes, signing up for one 5k in August and two shirts. The half-marathon in March I'm aiming for will cost almost 5 months "allowance" as it is. Sign up isn't open yet for that.


I've spent far less than many others I've already read stories about, flipped through a Runners World magazine at Books-a-Million for their "deals" which I would really hear about if I got a "deal" by their standards.

Yet are the costs worth it?

I won't even go into the chariot costs as we are trying to see what we can do more with that. I've talked about that enough recently as well...

I know it will all be worth it in the end. The moment I cross the finish line for the first time it will be. My village will be there to cheer us on too. I hope anyway...... I'm struggling with doubts still honestly.... Same ones as I talked about recently here...

Yet in the meantime, I wish sometimes my brain would shut up, or at least not go all over the place rabbit trailing. I get reflective during my time outdoors, especially when it's just me, my music and nature around me.

Then there's costs beyond money. Time, effort, mentality, thoughts.... Thoughts I'm always full of. As I'm listening to Shadowfall again and writing all of this.... (Yes same song that's been stuck in my head a while now.) At least every single day, I mean every single day that I have been out putting down miles, I have seen a red, male cardinal. Good sign maybe?

A family I have been following for like a decade now lost their daughter this week. Totally unexpected yet life is crazy unpredictable. The purple font is for her..... Another chiarian died due to surgery complications last week. I didn't know of him but the chiari community has been talking about it and I've seen the posts.

There is a cost to everything, no matter what.... Yet sometimes we gotta know if the costs are worth it. And why.....

Yet these two ribbon colors I will be wearing my first run. I can promise that. Purple for epilepsy and chiari. (Lavender is craniofacial but I'll have this cover it too) The green is for the TBI......






That TBI should have never happened. Encephalomalacia should never have happened..... I only wish I knew what it means long term......


I'm also going back to the IEP meeting yesterday. All went as I honestly expected with full time special education and other modifications. Working with his audiologist on the cost of getting his hearing aids equipped with what the school needs for FM. Not radio. lol More like allowing his hearing aids to handle computer work, teachers speaking and more. More like a microphone amplification specifically to his hearing aids. Looking at around $100 for that. Not bad honestly but since it's for the school, at school, I'm hoping they can cover that since it's part of the FAPE guidelines required for his education. I hope in time too he won't need as much services. I know it's way different than it was when I was in school. Though one fear I have long term is that the "crutch" won't teach him well enough how to handle the real world. The real world is hard, cruel and cold. Not always but much of it honestly is.... I know I've been told by locals especially that because of my childhood or whatever, I see everything in a negative light and I never see the good for it. Nor do I ever appreciate what is.

Trust me, I am thankful...... I'm thankful I've known his teacher for years. I've known our district is really good, especially for special education. I'm thankful he will get the help. Yet I fear the long term... The world is cruel and I just hope and pray there's enough warmth left in it for him to do well no matter what. I was asked what I wanted for him after high school. Good Lord, I have not gone that far ahead. Mostly.... Yet I had to.... College? Trade school? On his own? I wish I knew...... Best I could say was that I know he wouldn't have to live with us forever. Yeah... Lame answer but it was what I had to give.... Yet many questions that I'll never get an answer to...... Or answers that I just have to just wait on.....

One thing I really wish I could have found out though in everything is what his levels were before the encephalomalacia vs after. To know what that really has done to him in regards to learning and retaining. Also his behavior. I'll never get that though.... It's still hard for me to say it is a TBI to others. It technically is but it's hard to swallow. That and many who think of a TBI in a child think of either a bad accident or abuse as the cause and that's not true either. It was medical error.....

Yet so many unanswered questions....... God is in control yet sometimes I wish I could see out the window to know what is to come and how we get there. Obviously Heaven is to come but I mean closer than that.

What is to come from all of this training? All of this medical world stuff? Is what I'm doing now making any difference? Is it all in vain long term? Will I be good enough? Would anyone be proud of me? Is the reason brick walls keep coming in some of this is because I'm not good enough? Valued enough? Or is it a matter of my children not mattering enough? Is the reason fundraisers have mostly failed over the years for my children because of who we are? Where we sit on the "status" ladder? Because we aren't worthy enough? Because I'm seen as a "leech for the kids having SSI" stuff? Is that all I'm worth to people? Crap?
Where truly is my village? Am I good enough to be in one? If I am then why am I mostly alone in all of this? Valuation again? Aren't we all valued in God's eyes so then why don't we see each other like that? Why the status ranks?

That stuff.....


Now if I could just find sanity, a winning Powerball ticket and the fountain of youth, I'll be good. Oh and a way to eat whatever I want, when I want AND gain NO extra weight or fat cells. HA!

~ Special Momma ~