Labels

I met with a friend for lunch today and we talked a lot. The poor server had to come back three times just to get our order because we kept talking! We had a lot to catch up on.

Then I got home and got the date for my son's IEP meeting that decides his class placement. It also had all of his test results minus the testing for physical therapy which in August he will no longer get. My heart broke.

My heart breaks a lot on this journey I'm telling you.....


I expected it yet seeing it is like there's no going back. There is no more "guessing on where he is or will be" or whatever...


His IQ is borderline

He can't do this

He can barely do that

He isn't this yet

This is good BUT this

We recommend this and this

All will be decided May __


D-day...... There's a lot of D-Days in the medical world. Decision Day. Will they be good decisions? The right decisions? The best for him? All of the labels of his diagnoses, what he can and can't do, his test scores, his personality, and all of those labels will decide his fate for kindergarten.


Yet then also comes the flip side.... All of those who feel the need to tell me that I should either be grateful he can do A, B and C or those who tell me I deserved this and or asked for it. Might I add both sides have come from those in different walks of life. Family, Christians, friends, associates, and even professionals.


Why do we even do that?

Why do we feel the need to talk like that to people?


It's one of those moments where I wish I could go and slap down some miles. I don't have the time right now and my knee needs a couple more days first. Though I can't wait to hit the pavement Monday..... Instrument practice helps too.


I understand labels. They help us to know what something is or what it does. They are also used to describe stuff. Yet why sometimes do they have to sting so much? Why sometimes do they get used for the wrong reasons? Why sometimes I have to ask did my son get stuck with them when he didn't ask for this? Some of those labels could have been prevented had things been done in a timely manner. Yet here we are....

How much of where we are now could have been prevented had things been taken care of the right way in the first place?


Why.......


Oh I know, many who hear stuff like this want to start on the cliches. Or even the judgmental statements. I get it. People want to make others feel a little better or guilty and move on. They don't want to have to sit with someone and get to know the nitty gritty. It's too hard, it's too negative, they got too many of their own problems or whatever. I've heard all of that. I've even been told that I'm too negative when I don't have a good medical update. Like what am I supposed to do? "My son has encephalomalacia which is a type of TBI but it's okay because he's alive right?" So how does one help the other? How does one treat the problem or how to move forward? It doesn't. It just negates it. What good does that do?

Nothing.

What good does it do to sit there and tell people either verbally or non-verbally that you are tired of hearing the same ole' prayer requests week after week? The eye-rolls, the sighs, the slouching upon a person speaking yet again about it, the "again?" statements, and more..... I say keep telling it! Isn't that what that question was for? To find out the prayer requests of those around us regardless of what or frequency of?

What about those in for the long haul? Years of a diagnosis, or yet more diagnoses getting added as time goes on. Would you continue helping them then? Would you continue checking in on them? Visiting them outside of where you would normally see them once or twice a week or at work? Would you continue to once in a while offer to help with a dinner, a chore, a bill, anything? Does the label make the difference?

Why does those with short-term problems like an unplanned hospital stay get the meal trains, the cards, the visits, the calls, texts, GoFundMe, etc and those who are in for the long haul don't?

Oh some do but most don't.

Is it a matter of who we know, who's popular, who "conforms properly" or whatever other excuse we want to have?

Why?

Why do we treat each side differently? For the same reason as the prayer request thing? People get tired of the same story day after day, week after week, year after year?

I'm not posting this about us. Though I've seen it too. Many families have seen it. I've read the stories.

On a more local level though, why do people donate to the GoFundMe towards a multi-million dollar project like the Marshals Museum yet there are families here who are struggling, yet citizens would rather donate to something that should have had all of it's funding in the first place BEFORE they started building?!?!

Is that because many of those in need have been labeled as needy? Leeches? Lazy?

I have been labeled those and more.

Just because my children get SSI.
Just because once in a great while we have needed a little help....

Like getting my son's neuropsych done, which only happened because a family member covered over half.... Or the chariot we are currently seeking so I can continue training with him and adapting to doing Ainsley's Angels with him. As my son has asked me to do.  I've already gotten one hateful statement towards me about it.

Those labels are on me, even though my husband works, we pay taxes, we pay our bills and we borrow nothing. By the way, I hate to say it but most of the labels given to me in recent years have been from locals and family. Most from people who claim to follow Christ.

That's right!

Want some more labels I've had? Even in the last few years I've heard some of this. "Retard" "Psycho" "Ugly" "Defective" "Useless" "Worthless" "Should have never been born" "Stupid" "Dummy" "Lazy leech" "Only creates defective kids" "Wants a handout" and so many more.



What about you? What labels have been put on you? What labels have you put on others? Do you like your labels?

Some of my good ones are: "Stubborn" "Overcomer" "Advocate" "Honest" "Fighter" "Warrior" "Momma" "Wife"

So my question for this weekend is this:

What labels do you carry? Which labels are you going to peel off of you just because some ignorant person thought you were this or that? Which labels will you keep? Which labels will you put on someone else? Will what they look like, social status, economic status, religion, race, lifestyle or any of that make a difference?

Would seeing two people going through the same thing but the only difference between them be one of those statuses make a difference on who you choose to support?

If so, then maybe it's time to go back and reread where Jesus commanded us to love others and to treat others as we want to be treated ourselves.


I have this to say about my children though. My rare gems. It's not my fault some in this world refuse to see the special as rare. I'd take rare any day over ordinary!

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~ Special Momma ~

To the nurses who 'play cards'

Here's where you can say "Finally she shuts up about training!" Rest assured I'm not done there but I really gotta talk about this. It's not the first time I've talked about nurses here.

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Many of you have likely heard about the senator from Washington, Maureen Walsh who made a comment that nurses just sit around and play cards during their shifts. She's already received over 667 decks of playing cards and counting according to one story I read. Another more recent said over 1000. What started her firestorm was this. "By putting these types of mandates on a critical access hospital that literally serves a handful of individuals, I would submit to you those nurses probably do get breaks. They probably play cards for a considerable amount of the day."

Let me tell you as a medical momma my experiences with nurses. Let the soapbox begin!

via GIPHY

My first time as a mom dealing with nurses was when I was in labor with my daughter. Even before that, during my pregnancy. The most recent was our last appointment at Children's. Countless times in-between. Never once have I seen them playing cards, or any other game.

I've seen them have to go into another ICU room because a child coded. I have seen them come out of an ICU room with tears. I have seen them talking among themselves quietly of a miracle they saw the night before in a patient's room. I have heard them advocate for a patient, either to a doctor/resident or even to family who didn't understand what was going on. I have seen them take their time to sit with my kid (Either one) so I could get a quick bite to eat, shower or even to go pee.

I have seen them goof off with my daughter during a stay with an ICP monitor at Medical City Dallas. She loved that nurse and still talks about him all these years later.

I have seen them work with Child Life to get my son a birthday party he deserved even though he was admitted hooked up to an EEG and feeling awful. Yet they made him smile. I have seen my son on countless visits to Arkansas Children's since even that run up to those very same nurses and hug them and talk to them. I have seen nurses hold my son and my daughter as they have cried and screamed through procedures. I have seen nurses soothe my son through seizures and yet at the same time call for help. I have seen nurses rub my shoulders or squeeze my arm through many stays, both outpatient and inpatient.

I have seen them as I have been putting pieces together about my son's TBI called encephalomalacia, how it was from high ICP and why.....

I have even seen nurses clean up nasty bodily fluids. I remember our last stay after my son's last craniofacial surgery, he got too much Colace for too long. OOPS!! 💩 We had been waiting on that BM but just not THAT much!!! Yet that nurse on night-shift cleaned all of that mess up and didn't even tell me about it till after. (I told her she should have woken me so I could have helped!)

I have seen those nurses bring me treats, like one did on my birthday as I was at Children's in Dallas for my son's chiari surgery. They have been there as I cried and they held me or assured me that all will be okay. They have been there as I stood my ground professionally saying I will not accept waiting longer just to see my son decline more and I refused to wait on the doctor to decide anything. They have been there as I have had to call yet again with questions or concerns. They have been there as I have needed a place to vent about life as a medical mom and have listened. They have been there as I cried during the news of a missed miscarriage. They have been there as I cried after the D&C for that. They have even been there to chastise me about not taking pain meds for myself after my unplanned cesarean.

They have been there through so much.....



I have a few favorite nurses at several clinics/facilities yet they all have done what they are called to do. There's one that I know I can call anytime and she would be there. Because I have. Because I have called her bawling my eyes out freaking out during times EMS has been called for my son. Because I had to drive to Children's without him because he was in an ambulance headed there himself. Yet she stayed with me. She talked to me. She told me she would kick my butt if I didn't update her. She has before too!!!! I've even been to lunch a few times with two of my favorites.

Is every single nurse we have had been good? No.... We have had a couple of doozies over the years but by far the majority have been amazing.

Our journey with nurses and my kids is nowhere near done. We have more procedures, surgeries, appointments and more ahead with both kids. Yet I know nurses will be there. They will do whatever it takes to care for my kids. And even me.

So even if nurses did play cards, does it really matter what they do during their downtime? NO! Because they are doing what they were called to do: Save others. Serve others. Love on others.


I'm ending today with the open letter that someone named Shy Braaten wrote. I couldn't have said it better honestly. Now, go thank a nurse.


"This is an open letter to Senator Maureen Walsh -

Dear Senator Walsh,

You said that not all nurses deserve breaks as they just sit around playing cards while on shift anyway.

I don’t know any nurses who play cards, Senator Walsh. I know nurses who care for babies who were born with their spines on the outside of their bodies and brains that won’t stop bleeding. I know nurses who hold infants that can’t stop crying because they were born addicted to heroin and meth amphetamines.

I know nurses who roll those same babies down to the morgue when they finally do stop crying. Do you think that’s where they play cards, Senator Walsh?

I know nurses who care for patients that no one else cares about - the homeless, the forgotten and even the psychotic with the same dedication they would show a celebrity...or a Senator.

I know nurses who can go all night without food or a bathroom break. I know nurses with nerve damage and back pain from doing whatever it takes to take care of patients. I know nurses who cry in their cars. Do you think that’s where they play cards, Senator Walsh?

I know nurses who are hard as steel when delivering life saving treatment to dying patients and softer than a whisper when delivering the news that it didn’t work to the family. Do you think they all play cards together after that, Senator Walsh?

I know one nurse who is asleep in the next room right now after her second 12 hour shift of the holiday weekend. She left her shoes outside because she didn’t want to bring all the blood and bile that she walked through last night into our home. I wish she could leave everything else from the hospital outside that easy. She can’t. It stays with her.

Sometimes she doesn’t want to talk about it. Sometimes she can’t wait to talk about it.
Sometimes she laughs until she cries and sometimes she just cries but, regardless of those sometimes, she’ll be on time for her next shift.

She doesn’t play cards either Senator Walsh - but I do. That’s how I made my living once upon a time before I met a nurse who changed my life. You and I have that in common. Nurses are going to change your life too.

You’ll find out how right after the next election cycle. You’ll have plenty of time to play cards and plenty of cards to play with yourself then.

Sincerely,

One of the millions of people who love a nurse."

If you want to send her your story, or even a deck of cards, go for it.

Senator Maureen Walsh
P.O. Box 40416
Olympia, WA 98504-0435
(360) 786-7630
Maureen.walsh@leg.wa.gov

She may be "sorry" as she said here "I was tired, and in the heat of argument on the Senate floor, I said some things about nurses that were taken out of context -- but still they crossed the line.""I really don't believe nurses at our critical access hospitals spend their days playing cards, but I did say it, and I wish I could reel it back," Walsh said. She also noted her mother was a registered nurse and said she knows the "long hours she worked sacrificing to provide for her family." 


Thank you to all the nurses who have and who will be assigned to my children. Be assured, so many more of us see your worth than a simpleton politician who has no idea what she's talking about.

I truly believe that if she felt this way, others who decide the fate of our country do too. Let's send them a message.

~ Special Momma ~

Marathon training - Much to learn

Okay, I'm sure by now whomever is still left reading these are wondering what else there is to talk about with marathon training. More like my ADHD brain on a daily marathon going all over on this rainy day. 🤣 I'm going to look back on this and see how much I've learned within it since making my decision earlier this month to do this.

Yesterday my son had his PT eval for the school district. The therapist knows Ainsley's Angels in this area well and we talked a lot about it. She recognized my son from his dance video. See? He did go a little viral! Between her and another friend, I'm on the mend from this stupid knee issue. I know what I did to cause it, I know what the spark was but the stuff around it was something I could have helped. Yet it's a lesson learned, and at least I've learned it early. I'm also going to back off some on how hard I'm going with it, though that'll be hard for me to do too...... Just being honest. Hopefully Monday I can get back out and start again. No hills for a couple of weeks though. I'm just going to have to slowly ease back into it. At least I can enjoy the trails along the river or the parks.

I'm learning that training is much more than the fact of running, or at least building up to that point. It's also learning how to do proper core stretches, and other "minor" workouts like that. Apparently I have been doing it all wrong up till now. I was doing marching band stretches like we were taught, and that wasn't enough apparently also. Which I figured out I wasn't doing the right ones for this stuff, nor long enough of, nor enough types. Nor was I doing them after I did my time training. So yeah...... Novice dumb moves, HELLO! It won't be the first "dumb mistake" I have to learn on this journey.

Last night I had an online pow-wow with a friend where all sorts of crap came out... Tears too.... Yeah, I've had a few days of off and on tears of frustration mostly but anger at myself for "failing" at this too.... Yeah I'm too hard on myself.....  I've not been this pissed at being "weak" since my c-section with my now not too far from being five-year-old son. I teased my friend and called her a religious psychiatrist. Let me tell you though, the emotional part of this has been insanity. Talk about THAT being a crazy train! Who needs Ozzy for that one?!

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I know I was warned that all of this would bring up more than just the physical work but seesh o' pete! Who needs Celebrate Recovery when I can have that pot full of crap stirring up and coming out training? No, I'm joking but I think with this bringing out more crap, I'll have more to talk about at CR and handle.

Handling disappointments is something I've never been good at. I go into the blame game with it and it's usually at me. The feelings of not being good enough, fast enough. That any injury, minor or not would then be a failure to my son that I'm not any closer to pushing him when my goal is in June. Six weeks till that race and I'm not ready enough. That's been my struggle since being "benched" so to speak. The weather here was great Tuesday and I hated it because I couldn't be out. Today and tomorrow we're looking at rain so I don't feel as bad about missing yet still.... I should be out there getting good at this so I can actually not fail my son......

Maybe I'm too hard on myself (HELLO!!) yet I can't help it.... I've always struggled with being "enough" for anyone, let alone for myself so it's like a competition that I gotta beat my own PR (personal record) stuff each time I'm out and that's not realistic or good.

I have to do it lighter though.... As much as it pains me to even contemplate that. Yet talk about a test of patience!!! I want to be 5k ready like last week..... Heck if I can walk 13.1 miles twice in one week and a total week tally of almost 44 miles, then why the heck not? It's a ton better than where I started! Yet I feel like I'm having to start all over again and three weeks down the drain.....

THAT is what drives me nuts......

Just sayin......

Truly..... I want to know I'm doing this right and that I won't fail those I have made the commitment to to do that half-marathon in March. I have a lot of time before that. I have weeks before the June 5k and come hell or high water, I'm doing that one, even if I have to walk it. I really had hoped to start doing splits with running and walking this week.

Life had other plans...... Trying again Monday......

~ Special Momma ~

Marathon training - Epiphany and setbacks

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Sitting here listening to Shadowfall by Audiomachine.... It's the song I always start my training on to better increase my walking pace and distance.

Friday,  I posted my last entry here, I did another half marathon distance later that morning. Two in one week. I felt pretty dang good after I did that Friday. Nothing was hurting either.

I posted this Saturday morning.

"Training has shown me this. Time alone on the open road with thoughts, plans and dreams of a finish with my son. I only hope I can continue. I hope I can make a difference and know I'm finally worth something in this world beyond "staying home and being lazy." No longer am I letting the emotions of this medical world control me. Yes there will be days but those days won't go beyond. If my children can face the medical world as bravely and triumphantly as they do, then surely I can handle the training to the finish. The morning that started this was April 7th, the day after the Hogeye. Next goal beyond getting help covering the cost for his chariot Ainsley's Angels will provide will be running a 5k in June while pushing my son. Just since Monday the 15th , I have done 43.71 miles this week at about 19 minutes per mile. Both are better than the week prior. That's with big hills too. You all haven't seen anything yet. I'm just getting started. Week three is ahead."

Friday of last week

vs Wednesday of last week.

Total of last week, time it took me is the graph.

However Saturday the right knee under the kneecap area has been hurting, especially if rotated a little like getting into a car. We wound up having to call a locksmith for us, my contribution to Easter dinner failed and had to do plan B and my mood was crap. Hey at least I've lost five pounds since the 12th! And I need a belt for several of my jeans now. Good and bad. Sunday my knee was still hurting but I wanted to go out the next day and at least walk on the level trail. No jogging till the knee stops hurting. I'm not making it worse.

Sunday morning I also got a rude text basically saying "Why would anyone want to cover that "chariot" for you as you called it? You sit there and beg for something that you can't pay for yourself. You should have thought about that before training for a marathon I don't see you finishing anyway. What's the point when this will likely be just another fad anyway? Get over yourself and just be glad your son is accepted with Ainsley's Angels or whatever. Quit being a leech living off others and the government. Live like the rest of us have to. Pay your own way and quit asking for stuff."

I was bound and determined to not let rude people get in my way. I've dealt with comments from people for my life but especially since my son was born. It's one thing to be told growing up that I should have been aborted or that I will never succeed at anything. It's a whole other ballgame when you tell me that I will fail at a promise I made my kid. Chariot or no chariot, I will find a way, the chariot just will make that much easier to obtain because I'll have build the endurance before a race day to push him versus not.

I did three miles yesterday on the flat trail and my pace was around 20 per mile. Not my goals but something right? It flared the knee up a little more.

Then the setback came in.....

I got reminded that I'm pushing too hard and I need to slow my pace down on this. I know they are right but man am I mad. Not at them but at me. I'm just honestly pissed at myself for the injury that I could have prevented by being more careful dealing with the block on the trail Friday, at least...... I just feel like a weakling simply because I stretched my right leg too much trying to go under a dead tree that fell on the trail Friday....... I'm just frustrated. Just for once I want to do something right and be good at something for once. Yet my weak 180 pound "lazy overweight " (as some family have called me) butt is pathetic and can't. I stretch and what not before and after each time out on a track/trail yet I still manage to screw something up.

The epiphany coming home yesterday from community band was this: the reason why I'm pushing myself so hard now to do this is indeed for Ainsley's Angels and my son as I have said. Yet it is also to prove to my son that I won't fail him like I did in late 2017. One of my friends knows how I feel about that. Had I not failed him then, he wouldn't have a TBI and epilepsy now. I failed my son once before because I wasn't loud enough and trusted doctors timing. Losing Dallas a few months prior to that only added to it. I have had that guilt compounded in recent months with neuropsych results and continued visuals of the encephalomalacia on his MRI'S..... When he asked me to join him at the Hogeye I couldn't and he was not happy about it. Yet that is something I can control. What I do..... So I have. And now with this flareup or whatever with my knee thanks to climbing over lap 1 and under lap 2 a downed tree Friday, I feel like I'm failing again. Sounds dumb maybe but I refuse to fail him again and yet I struggle with feeling like I already have by having to backtrack all of this I've done so far.

It's frustrating feeling like I failed, even if deep down I know I have not. He is my responsibility and so therefore I struggle with feeling like it still is, even though I know that responsibility wasn't mine.... I just want to feel like I did something right for him, you know? Not be a failed mom for my kids...... I feel like I'm failing the one group that has such good inclusion and God who trusted me with them and I feel like I failed Him too....

So all of that said, with  much reluctance, I have agreed to do the couch to 5k plan..... Less chance of overdoing it if I stick with it..... It'll still give me the chance to do the 5k in June I want to do with Ainsley's Angels. At least I can say I did almost 44 miles in one week at that only being my second week of training..... Did three miles yesterday with the eldest. Wanted to do more though..... My knee was fussing still some but I did not push hard yesterday AND did a flat trail. It's supposed to rain the next few days here so I suppose that's God making me sit still and let this thing heal before I go back out at this point..... I hope I can go out Thursday or Friday for a few anyway.... Even if it's just the 20 minutes couch to 5k has for day one.

I'll settle the knee than work on incorporating jogging and begin the couch to 5k.....I'm going to have to push that a tad harder than it says due to the timing of the 5k I want to do and push my son for the first time with Ainsley's Angels though. Maybe I shouldn't but I can't help myself..... I just don't want to be stupid either. Now to ease back into this in a slower pace..... May my spirit let me pace it.....

Time to go wipe my face again......

Tears do not tell the tale of defeat, but only of a change of plans..... The goal is the same, just the means are different. June 8th I will push my son, even if I have to walk some of it. I will push him in my first 5k and I don't care what my weak, fat flesh says. I'm doing it.
One thing I have been learning in life is this from Dolly Parton "Storms make trees take deeper roots" or as I'll also add, they knock down and kill the trees. Other trees lose branches but still stand. Though they will forever remain without those branches, especially if they were large ones. It's a stark reminder of the storm that tried to kill them.

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Just because I have lost many branches over the years of either crushed dreams, stalled ideas, "not being good enough fast enough" abuse growing up, facilities/group homes over the span of eight, almost nine years of that it doesn't mean I'm dead. It doesn't mean that new branches have not grown out of what was broken. The scars of what was is still there, but it doesn't mean that nothing new can come from it. All my life I've been told to either "get over it" or that I'm a liar or drama queen. We may not be able to change what has been but we can do something about what will be. Even if it's harder than hell...... When it comes to marathon training and all that goes with it, a good song that fits that honestly is Highway to Hell...... Well it does!! "And I'm goin down..all the way! I'm on the highway to hell....." May I be refined and ready for this when I come back. God willing.....

I gotta say though I never thought working through training would bring up so much emotional crap with it too. I was warned it would but wow, I didn't think it would be like this.....



I'm going to end this post with one of my favorite lyrical songs for today. It fits well, even if I can't be racking up the miles much this week......

"Not Gonna Die"By: Skillet

Death surrounds
My heartbeat’s slowing down
I won’t take this world’s abuse
I won’t give up, I refuse!
This is how it feels when you’re bent and broken
This is how it feels when your dignity’s stolen
When everything you love is leaving
You hold on to what you believe in
The last thing I heard was you whispering goodbye
And then I heard you flat line
No, not gonna die tonight
We're gonna stand and fight forever
(Don’t close your eyes)
No, not gonna die tonight
We're gonna fight for us together
No, we’re not gonna die tonight
Break their hold
'Cause I won’t be controlled
They can’t keep their chains on me
When the truth has set me free
This is how it feels when you take your life back
This is how it feels when you finally fight back
When life pushes me I push harder
What doesn’t kill me makes me stronger
The last thing I heard was you whispering goodbye
And then I heard you flat line
No, not gonna die tonight
We’re gonna stand and fight forever
(Don’t close your eyes)
No, not gonna die tonight
We're gonna fight for us together
No, we’re not gonna die tonight
Don’t you give up on me
You’re everything I need
This is how it feels when you take your life back
This is how it feels when you fight back
No, not gonna die tonight
We’re gonna stand and fight forever
(Don’t close your eyes)
No, not gonna die tonight
We're gonna fight for us together
No, we’re not gonna die tonight
No, we’re not gonna die tonight
Not gonna die
(Not gonna die)
Not gonna die
(Not gonna die)
Not gonna die tonight

I'm not done yet! I refuse to fail my kid again....... I just need a body that does what my mind wants it to do...... In the meantime I'm glad I finally have an Ainsley's Angels shirt, I can do my training in that, run/walk with that at events and be proud that a program like this exists for my son and many more out there like him.

"Great works are performed, not by strength, but by perseverance."
— Samuel Johnson

~ Special Momma ~

Marathon training - Rambling

Yesterday after I posted here, the negative hit me hard..... Most of this Blogger post I wrote last night and did editing this morning  since the writing was on my tablet. It's shared as I wrote it last night. This post is raw, real and honest..... Even this morning I'm still struggling some but hitting the outdoors later will help. Hubs is going with me today. Let's see if he can keep up. 

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 I shared the following on Facebook but later took it off: 

"It's frustrating when you write something uplifting in Blogger just to get full of doubts later the same day........ I know what's discouraging me but yet I hate how when something comes from the heart, all the self-doubt of everything working hits soon after.

 How you start to question if what you are doing will make a difference. If it'll be something I push through and conquer. If it'll be something else I struggle feeling like I'm doing enough with. If the cost is worth it. If yet again I'm trying to fly and instead I smash my face....... Again...... 

 It's not that I want attention or recognition but I want to feel like I'm doing good. Like I'm making a difference. If the tough doesn't break me. If when the moment of truth comes, can I overcome and finish? I know some doubters think I'll just quit this "fad" thing. My stubborn will is there, but is my endurance? My doubts also come with summer coming and school letting out. It takes a few hours to do 10 miles now. 

Can I continue this summer with the eldest home? What about  next summer when two kids are? Theoretically I'd hope to have that pushchair for my son by then but because of how loud the past speaks, I carry doubts..... The only reason neuropsych happened is because some family paid into over half of the balance. Otherwise we would still be waiting for it..... 

I shouldn't doubt but I can't lie. I should just trust and have faith, I know. To trust the unknown, to trust hope, to trust the will to make a difference is hard. Harder than those hills I've done several times this week and will do again tomorrow likely. Why? Why can't I just keep the faith? Why can't I trust that it'll work out? I can't fail because than I'll fail the promise I made to my son..... 

 Determination isn't always enough but it helps..... 

What is my fate here? 

What about the next Children's admission? How will that length of stay affect my training? What if I fail finishing that marathon because  of life keeping me from training? I hold fear at the moment of that. If not life than my weak flesh or mind....

I'm doing a good job of the showing faith right? NOT! Maybe the brick walls aren't  the physical endurance but more so walls of the mind and spirit. I may have broken the half-marathon wall in four and a half hours already but I'm seeing there's much more ahead. I need to shorten that time, walking or not. I hope those mind and spirit walls, I hope I'm strong enough to break those walls too...... Thanks for hearing me ramble......" 

 A friend commented: "While goals and hope are important, you're missing the acknowledgement and accomplishment of today by shifting your focus to what has not yet happened. Focus on today, what lies ahead no farther than when your head finally hits that pillow and your eyes close for the night. Those hills are such a big feat. Not many can conquer them like you are! You spoke inspiration in blogger today and released the words that you had pent up inside, begging to be put into written text. Marvel at your accomplishments. Look at your sweet babies and your dear hubby and breathe in with eyes open, pause, and as you slowly release that breath, close your eyes and give yourself the credit you so deserve. Today was a success among bigger successes. Those accomplishments needed today in order to be what they'll be later. Close the book tonight with love for the page written in it. Rub your thumbs lovingly on its cover before you set it down to write in it more tomorrow. Thank it for all that was today, for the lessons you didn't even know you learned, for the growth you made without realizing it, and for the inspiration you brought to others with great love and purpose."  

 She's right yet why won't my brain shut up already? 

 I had been tagging a few people on my achievement posts in the last week, the first Ainsley's Angels post last Friday and the one I did yesterday as the part two. After a few hours of waging war within my own self, I took off the tags on most of it this evening. I don't want to just be "annoying" with my stuff either. 

Do other people training for marathons tag people during it? Or write blog posts about it? Unlikely.....   Why do I post in the kids' group page, can see who's seen it and yet silence pretty much all around? I'm used to the silence on mine because as I've been told, I "Chase everyone away." Why am I even thinking about Facebook? Why am I even bothered about social media? 

Why can't I just stay focused on this goal and silence the doubts and crap? Why do I even carry the fears of and with this goal? Are these mental roadblocks I'm having normal?  

The fundraising for a push chair, I fear it flopping. Why? Because all in the past I've been involved with did but one and that's only because of a family member with the neuropsych testing you read about earlier. 

Why? Why can't we just be a family that can be able to afford stuff? Why can't we be a family that people are willing to help once in a while and support like others get a surplus of? We all can name at least one or two who asked for a little help and got a lot, yet some out there get little to nothing. Is it just another popularity contest? A way people tally up who's worth it or not?

Yeah, yeah life's not fair. Don't preach it to me. It's still a valid question. Yet without it, how do I effectively keep the training going when he's home? He's too big for regular ones now that generally cost less.  

 The village thing, I believe that, yet I can't help but wonder if I'm setting myself up for failure again. Setting myself up with hope that gets crushed like it always had before.  

 As I lie in bed writing this up, I want to just blame the rainy day we had on all of these thoughts. Yet I know there's more to it. What and why? Do others who train for something big like this do the same as I am with the battle within?  Or are these just demons within I gotta find a way to kick out?  

I just gotta know that I'm doing this right AND good enough......  

Time will tell.......   

 From Pinterest 

 I hope it is at least...... 


I don't need to fail my son too.....  

 ~ Special Momma ~     


After I posted this, I was still struggling some with this. I commented on a post in the Ainsley's Angels group about it. This was shared with me. It really helped. I'll be out later and that will help to. May I persevere!  

Marathon training - Ainsley's Angels pt. 2

An actual pic from just past the first large hill on one of my trails. The dogwood is so worth the trek!

Training is NOT for the faint of heart!

Let me tell you, it's a chore. It's hard and I'm not even running yet! I've been told that it'll take about three months before it gets better. So be it.... One place I've hit has been easy. Another clearly not. Yet the one that is not, I finished, not one but TWO laps the first day I really aimed to get all the way to the top of the hill.The first pic is the easy track. The second pic is a trail with lots of elevation in a mile span of it I took a shorter way back to the start point not realizing how short it really was. Monday was the first pic. Tuesday was the second.

Yesterday I did this.

You can see that in the third mile and 8th mile, that elevation is what I hit. I typically do that trip twice around. A full lap for me is about five miles. I found a longer way to expand how far it goes out. The latter half of the lap is the easiest thankfully. Compared to the huge hills, it's nothing. Yet after I did that yesterday, I felt like I really accomplished something. I thought I was going to die trying to get that last mile in though. It seemed like it took FOREVER! My phone was about dead too. I need to get one of those pocket packs to keep it charged with. Especially since I listen to music while going at it. Night before last I also only got four hours of sleep. Woke up in the middle of the night and couldn't fall back asleep for a while. I hate nights like that but thankfully they aren't too often. 13.2 miles on four hours of sleep.

I wore that tank yesterday for my training. I planned on at least 10 miles but once I hit that, I figured what was three more? That last mile about did me in but I was NOT going to quit. I think I was a little crazy for that but I proved I could do it. Last night and today I've done a little bit of a penguin walk thanks to being sore.

via GIPHY

Next week I begin integrating some jogs in the miles. NOT on the huge hill segments though! Not yet at least. Good Lord, I could just see that.... Just no snow with it. haha

via GIPHY

I'm glad I remembered how to do deep muscle massages on my calves from marching band after that. Good thing I have close to a year to get my pace smaller though because trying to finish an actual half-marathon even at close to five hours I won't accept of myself, hills or not. I'm a little sore after the last two days but not bad at all. Especially all considering. It just proves that the training is working. Had you told me the day of the Hogeye that I would have done this less than two weeks later, I would have thought you were crazy!

I will say though, yesterday was my 8th day into training! Training walking days total of 6. Six days and on day 6 of the actual walking with my pace generally above 3mph, and I did over a half-marathon distance.

They are why. My son is why. For a good cause is why.

All of my posts about my progress on Facebook have had these two hashtags on them.

#ForAinsleysAngels #ForMySon

I also got messaged recently over that dancing video of my son. (Last post I shared it) "No wonder you have been writing about them and training. I want to learn more and see if my kids can be involved where we live at! Keep up the training! You'll get that marathon done!" I sent her the link to the website and hope she keeps me updated!

If that isn't doing something right, I don't know what is.

Honestly, I have not felt this good emotionally in quite a while..... Just being real now. Really since losing Dallas officially in August 2017 especially, I had been going down a hole. Much of that hole was my own digging but with inspiration from so many who had so much to say that didn't help. Most of those words and actions came from locals or family. Honestly....  The hole was deepest since June till honestly the Hogeye. Thanks to this inspiration, I'm crawling out. I know some of my posts here have reflected where I have been. I don't regret those posts, as I was speaking truth. I don't have regrets in that. However, reading the stories every day on the Ainsley's Angels Facebook group restores some hope in humanity. I never thought it would take an event like a marathon to first REALLY see it. I saw it at the other Ainsley's Angels events too but my heart had too much hurt to see it sooner than the marathon....

Yet seeing the difference in what nine days now has done is something I would not have fathomed even a month ago. Especially with everything I have been learning in regards to my son and his brain stuff. Even training since the 9th, I have heard our county EMS on two different sessions. Both times it brought everything back......all the memories of my son's first epileptic seizure at home hit me. I remember the seizure well, the EMS ride and our local hospital being stupid about it. Days later he had two more and was diagnosed with epilepsy and his MRI showed newly found encephalomalacia (TBI type injury) caused  by another medical diagnosis and too high of pressure on his brain for too long......  It wasn't there the prior MRI months before. Yes, I know I shared that last post too..... Still... It happened earlier this week too. It is a reminder of why I'm doing this, even when it's tough.

I still have had some moments though of wishing I could change things for my son..... I'm told that will get better too... Had it not been for his journey, I probably would never have heard of Ainsley's Angels and certainly would never think of training for a marathon!

-------------------------

Also, I know I don't come out with details on my family much on here but I have been given an opportunity to help further my goals with Ainsley's Angels. The president of AA has set up a Crowdrise fundraiser to help my son get his own chariot for days he is home and I'm training. It would also help me build the endurance to push him during races. I would be grateful if you can at least share the campaign. This is the chair. To know that a president of an organization would set this up for my son speaks so many volumes. I hope we get the funding for this.

What also amazes me is how young my son is yet his story has touched so many. How he seems to light up a room and cheer people up. Well except if you tell him "no" to something. haha Every time we go to Children's since this summer, he has insisted on visiting the staff on the two inpatient floors we were on. 20 days inpatient and runs up to them like he's known them forever. He's not terrified at all of the hospital, unless he knows he's getting labs drawn then it's all over.... Yet for children to go through so much yet still shine is a testament of itself.

To go to all of the events I have with Ainsley's Angels and see the joy on the faces of all who are there, riders and athletes alike, is so contagious!

Why can't the world be more like that?

To know that the people we see at CR and Ainsley's Angels events bring joy to my son brings me joy too. To know all that he had endured is not in vain makes the pain of the bad days more bearable. To see my son show others inclusion and involving them brings me joy. This video was at an event recently we went to. Red is my son's favorite color yet he chose on his own to share with another child.

Maybe, just maybe God is using my son to do just that. That I will always write about. The world needs more of it. I am not sure where all of this will take me honestly. Considering the other day was semicolon day, I know I have come so far. From being suicidal at age 12 and wanting my life over to what all I have achieved and survived since then is a story of itself. It's a testimony novel. Yet to see Christ in Celebrate Recovery and especially recently many of those I have seen within Ainsley's Angels brings renewed hope that all I have done and will do is not in vain. To know now that I am not alone in this. To know that no matter what happens from here, they have my back makes me emotional honestly.

I've never had that before.
That is the God honest truth!

May all of this bring renewed healing for my heart as well..... There is still much I need to heal from. Yet to know God used my husband's friend to bring us to Ainsley's Angels and God called one to lead our local chapter to bring joy to so many is inspiring and aweing as well. Nothing is impossible with God yet we are the ones who put Him in a box..... Too long I have let the hurt build. Too long I have carried the guilt of what my son has faced since we lost Dallas. Too long I gave up on myself.

NOT ANYMORE! (May I keep that stance too!)

And neither is yours!!

As I saw in a blog recently, we all need to remember the following:

Love rules in the place of selfishness.

Kindness in the place of cruelty.

Generosity in the place of greed.

Humility in the place of pride.

Social justice in the place of inequality.

Mercy in the place of fear.

And grace rules in the place of judgment.

When we get there, we will be more like we should be. For now, I am thankful I have found it where I have. I just gotta remember that on the hard days too...... 

All of that to say, I can't wait till I cross that finish line for the first time. I don't care what my time is or what my place is, as long as I finish. It'll all be thanks to God, my children, husband and Ainsley's Angels for giving me the inspiration to do this crazy deed. Join the club! I've been crazy long before this! I just think this plan proves it. 🤣 I can't wait to see how many more brick walls I'm going to smash through during my training and the time to come in the future. Yesterday was my first smashed wall. Over 13 miles! My son is worth it and so is Ainsley's Angels. If my children believe in me, then surely I can believe in myself with this.

via GIPHY

I'm smiling at the fire ahead of me, and I will win.

"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 ~

Together we shall!

~ Special Momma ~