“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 ~

Wednesday, August 14, 2019

Ainsley's Angels 5k




Most of you know that I've talked about this organization. I have posts here about it and have been training for them. This post will be like a recap of all of those parts but more about why, memory lane and this last weekend.

It was a friend of ours who led us to this back in December 2018. Six months after a very crazy summer of new diagnoses, again. Yet my son rode in the chariot with the wind for the first time in December 2018. I was frazzled that evening because we were late and they were waiting on us. Yet his runners waited. Instead of just running for placement or whatever, they waited on my son for the inclusion. I wasn't judged for being late or anything. Just accepted and including my son in a race.


A few nights ago, I meet the founder of Ainsley's Angels and heard him tell the story. We had a BBQ dinner the night before the big Ainsley's Angel race. I saw the book his daughter wrote about her baby sister and why Ainsley's Angels was born. Yet to hear "Rooster" talk, the story he had is amazing. Another family chose to cover our dinner that evening when she overheard my hubs and I talking about it a few days prior.

I felt honored to be a part of it that night. Driving home I couldn't help but think about it. People embraced and loved on me, on my son, on my daughter and even she has grown from this organization. She sees some of the angel riders now and does not hesitate to interact and goof off with them. She doesn't see them as any different from anyone else, and neither should we.

Saturday morning came early. Late night Friday and an early start Saturday. Talk about tired! And to start our 3.1 mile run was humidity at like 94%! Yikes!!
It was hard. It was hot. Yet I got my best race PR! I was a little sore but no injuries. I pushed myself harder that day than I ever have.





Friday and Saturday were some of the best days of my life. I had not been that happy in quite some time.... It was like being at the CCA retreat except you sweat. Haha

No seriously, for "Rooster" to take something out of his circumstances and to bring forth Ainsley's Angels is amazing. To see his dream come to bringing anyone with disabilities no matter severity into the world of inclusion is amazing. To go into what we had this weekend and see more acceptance and inclusion than most of the loved ones had ever seen is a miracle of itself. To go into that 5k Saturday was stunning to see so many pink shirts and chariots. To meet a family from where I used to be in Indiana was great! To have them tell me my son is welcome to ride with them anytime was great! To be able to go to the Naturals game regardless of affording it, was heartwarming. We were going to skip that but I basically got told "no way! Get tickets!" Was heartwarming. To have our dinner Friday night covered by another beloved family was a huge blessing. To PR yesterday was great too but you know what I loved best? The inclusion and getting to talk to the one who brought Ainsley's Angels to all who can have it. To have inclusion no matter what, regardless of anything else subjective, we had inclusion because we all were human and there for a common cause. Being sore for pushing hard was totally worth it!!


Honestly? I don't care who gets butthurt with my next statement but I'm saying it anyway. Celebrate Recovery and Ainsley's Angels are the best. Why? Judgment free zones, inclusion, acceptance and no matter where you are in the journey they motivate you. They cheer you on.

That I am going to keep being a part of. This is worth running for in a woman who was never an athlete before April 2019.

We even got to talk about the struggles with different things in life and all with it during the drive to and from the Naturals game. Even the nitty gritty of the medical world..... Guess what? No judgment! I got to be honest about some stuff and no judgment nor rebuffs! No lectures, no blocking, no yelling, no nothing. Just discussion and keeping it real and honest.

That is what life should be about. That is what family should be about. That is what Ainsley's Angels and Celebrate Recovery is about.

If society could learn from this, if communities could learn from this, if schools could learn from this and if religion could learn from this, our world would have much more peace...


I have not been at peace...... I am not at my lowest point in this medical journey but I'm not back where I feel I should be yet either. However, thanks to Celebrate Recovery first and honest to God, Ainsley's Angels with joining them, I am coming back. I want to talk about how far down I went though.....

I was thinking about this yesterday on what else to say here. A song came on my workout playlist and it brought back memories. Memories of two years ago this month when we were losing Dallas of ten years. Two years ago when all of the advocacy and fighting and everything fell apart. It all came falling like a house of cards. Yet I had to pick those cards up alone and rebuild. Alone..... I admit that's where the bitterness at it's worst started...... 

So many people, including locals and family were telling me to get over it. To just roll with it. That I was making a huge deal out of nothing. So much more..... I even had one text me and say "Why are you so upset about losing Dallas anyway? Your kids will be fine and insurance just likely didn't want to pay for extra stuff anyway. If your kids are meant to not survive and thrive, then so be it. Just learn to roll with it and quit griping!" That was two years ago today.... I was even told it was my fault we were losing Dallas because we couldn't afford to keep them given the bad insurance coverage. Yeah that helped..... Did people sit down with me and let me talk it out? Did people give me the chance to just vent, cry and talk without telling me how wrong I'm handling it? NO! Did people offer to help us through it? No...... I did have a couple who would listen but it was more preaching and telling me how God this and God that. I understood that and knew they were trying to help but that's not what I needed as much of during that time. I needed more... I was always told to "give it to God" and those people that told me that would then walk away, not willing to listen when I need it. And was told multiple times to get psych help over it. I've been told that and much more off and on throughout the last 12 years simply because I talk about our medical journey and my heart/mind struggles......

My heart started getting hard again..... It's not hard honestly for me to get like that..... I have lived all my life on survival mode so getting out of that and staying out is about impossible... I saw many others getting love and support but we were not. Others who had people flocking to them to help but not us.... I knew our valuation was viewed as less than many here but that just proved it. Or at least in my heart it did..... It wasn't that I felt others shouldn't get, it was more of why we were left in the dark to fend for ourselves when we needed spiritual and emotional support the most.... (As in the most during those times, not more than anyone else. Don't get it twisted.)  

Valuation is what it boiled down to. I even was told that by a few locals. We didn't have people nor the popularity.


I realized I wasn't alone as a medical mom in that struggle. I started talking about my struggles and trying to get people to see either what they were doing, both to others and poor representation of Christianity or to share with those who faced the same issues that they weren't alone.  

I love the following pic because it depicts what we all should be for those around us who are struggling but we're not...




I could care less how people view me but how dare people show my kids they are worth less than Joe Schmoe over there and everyone else...... I spent my whole life being unwanted, unloved by most and a burden to everyone else. I was unheard and only drugged up to shut me up. Nobody wanted to help me. Ever. People still don't for the most part. I was NOT going to tolerate my kids being seen as that either!


Some of my blog posts in here seriously reflected the struggles with those storms and where my heart went.... I don't regret my entries in here but yet to look back on that, I really was struggling in a silent and lonely world..... Nobody was there. 

To top that off, we learned my son really needed surgery much sooner than first thought, he had too high of pressure on his brain and Children's was making us wait on surgery anyway due to scheduling. Then months later epilepsy and encephalomalacia came into the picture due to waiting too long....... That added to it..... More comments and opinions as well about how bad we failed and all of that. More recent were comments that I just want my son to have problems for attention and money. As if.... Then we did twenty days at Children's due to ADEM. (Unrelated to his epilepsy and brain injury!) Minus family, we had two people visit on one day during that stay. I stayed with my son for all but one night of that. Hubs did one night. We pretty much supported ourselves for all of that stay too. God's miracle for that but we did. We support ourselves with no help from anyone minus one GoFundMe for my son's neuropsych testing that a family member covered the majority of. Though I do wonder if all of the parents/caregivers of children on SSI/Medicaid hear this stuff too...... I know some do because I've heard/read the stories.

Yes, the last few years changed me the most. Watching every single seizure, especially the first changed me. Riding in the ambulance with my son still seizing changed me. I still can't hear our county EMS without jumping and getting near tears..... The 20 days at Children's with also a several day stay soon before it changed me. Not knowing what of my son would be left during the last extended stay changed me. Learning of his brain injury and why changed me too.... The minimizing I heard and or the accusations that I'm making a big deal of his medical world has changed me. Being told that it could be worse and to just get over it changed me. Being told we are less deserving of support (Any type) changed me. Seeing people at VBS afraid of him and not let him in their group honestly changed me too... He finally got into a girls group because the leader took the initiative to take him in. I saw and learned a lot. Still am. His journey is far from over and still carries uncertainty for his future. I have no idea as a start how his brain injury will affect his future. Let alone the rest of his medical world. Even my daughter's isn't over yet. She has another type of major surgery ahead of her, let alone if another cranio surgery is ahead either. Honestly even before all of that, the first trip to Dallas for my daughter changed me. I became a medical mom... Yet I make a big deal out of little apparently...


Where's Jesus in that? Where's support for others in that? Where's 'love your neighbor' in that? I saw it was all selective.


Again, 
I started talking about my struggles and trying to get people to see either what they were doing, both to others and poor representation of Christianity or to share with those who faced the same issues that they weren't alone. I was just outspoken with no fear of sharing. I see why most who feel these struggles sometimes don't speak about it.  

I have learned that many out there have the same struggles as me. I hear it in the groups I'm in and through some conversations with other special needs parents. Though as I learned yet again recently, sharing struggles via social media makes you enemies. Even when you can't control it, nor how it shows up in a newsfeed compared to other posts others make. However, it also helps you and others to know we are not alone in those struggles. If being open and honest all these years with these struggles, and yes that includes the stuff I shared here from way back when that I still do at times struggle with makes me enemies then so be it. If making enemies allows me to help just one, I did something.


If that makes me the community outcasted, loudmouth pot-stirrer (As I have been accused of on social media and to my face several times) than so be it.



So anyway, yeah...... The judgment and condemnation was worst from when my son was born to honestly when we lost Dallas and a little while after.

Learning the clarinet has helped. But it was still keeping me at home. Like I wanted. Then we wound up at Children's for 20 days after a recent four day stay prior. When we got home I put a lot of focus into research and learning both neuroscience and the clarinet. I didn't want to deal with anyone  beyond Celebrate Recovery because of all of the prior crap. We had been pretty much forgotten or ignored while we were away. Later, it was like pulling teeth to even get one friend to convince me to try her MOPS group come that fall. That first day in there was like going to a new school. Yet I survived and was able to definitely make some new friendships. Last December things began to change. That's when Ainsley's Angels first came into my life, which I shared earlier.



I was honestly reluctant to give Ainsley's Angels a chance. Not because of them per se but because of all the betrayal and negativity I'd gotten from everything else. I kept even them at arms length distance.

I'm glad I did give it a chance.... This last weekend proved all of that. Other moments have too, as I also shared earlier but this last weekend really sealed the deal..... Over six months of being within Ainsley's Angels total. Eight months as my son being a rider and four months of me being an Angel Runner. Really didn't do much running though till early June. Two months later and I did a PR with the ArkAngel 5k. My average pace overall now is 11-14 minutes per mile. That's with run/walk intervals. Sometimes more running than walking, sometimes more walking than running. Depends on the day.

My training has changed me. It has not changed the struggles but it has changed my healing from within and I have a long way to go. I still speak on struggles. That will never change. Enemies or not, I know sharing has helped others so I will continue to do so. Those who truly support me will be the ones that stick around.... So much more healing to come. A few have seen that. I have also already defied what the majority of all the predictions thought all I'd be.


One thing I will always wish for though in this world.


We really just need to act like a village instead of saying we are and only help some but not others..... As a whole that's much of what's wrong with this world. We decide we don't know or like whomever or we see something as "not our problem" and walk away. But when it does affect someone we know, as long as we either like them or sometimes related to them,  then we might help. Help being any method of help. Financial is what most think of but people need way more than that. We've gotta change that mindset and have all equal all, not just the few we want. 

If money was all it was about then how come do studies prove that the rich are overall unhappy? Money doesn't buy real, genuine support.

Knowing the right people does. You can't just know the right people though, they have to be willing and want to support and love on you in order for them to be willing to support in any form. That's not what Jesus, or even proper manners taught!!

I heard something recently. "You can't help other people unless you spend time with them." Yet then why don't we get more intentional to get to know others? I'm guilty too.... The last few years I have preferred to stay either alone/one person group thing. When I am in a social setting, I'm either a wallflower or semi-social beyond how I can be myself as a social butterfly at Celebrate Recovery. When my anxiety hits I'm either really quiet or I don't shut up. That is my natural, to be social, sometimes too much.... I just am not really much that anymore.... Yet that person is right, how do we know what is going on with others or understand/empathize with what's going on with them either what we see or even what storms are inside of them if we won't take the time to know others?


Even if we don't jive with other personalities, just taking that effort can make a difference.


That's what I have seen both within Celebrate Recovery for the most part but most especially Ainsley's Angels.



This weekend really showed me all of that. Ainsley's Angels have shown me time and time again that they are an amazing village. To be accepted no matter my pace, how long I have been doing this, no matter how disabled my son is, no matter anything. They accepted me. To be given a chariot to use by them despite all of the local negativity I faced for the Crowdrise, was humbling and a blessing. It allows me to keep training even when my son is home from school and he can enjoy the ride too. He can roll with the wind anytime.



They have showed me the most that I truly matter, warts and all. No judgment, no condemnation, no "not good enough" and most of all, no "you don't belong" or any derivative of. Nobody, and I mean nobody has done that before.


I think Ainsley would be proud. God used her story and her daddy and therefore many more to bring inclusion. To bring acceptance. To bring love. Just as Jesus would want. It's something this world needs a lot more of.....




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! To be greeted by strangers, race bib or not is acceptance. To have people love on my son and even my daughter no matter what, without any conditions is something not seen nearly enough in today's world.

Why can't the world be more like that?


Look up Ainsley's Angels on YouTube and look for episode 181 Spotlight Saturday next week!!


May I continue to heal because just as I think I am "healed from" A, B and C; D, E and F show up. I thank God for Celebrate Recovery to help with my hurts, habits and hangups because we all have them and always will. They just change over time. Yet they too are a judgment free zone.


~ Special Momma ~





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