“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'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 ~
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