I AM FREE… It’s only an hour. Oh, but it’s a whole hour and my legs rejoice! They stretch, strengthen, hold me up. The rest of the week my legs are still. My chariot, a black and pink wheelchair, acts in their place to move me from here to there, but when I’m riding Blakken my legs have an entire hour to come alive and I can finally stand. *SIGH* When I’m at Alatheia I am a heroine in a dramatic story of dire circumstances and I ride to save the day. I stand tall to show my superhuman strength and for one hour, one whole hour, I am invincible. At Alatheia I am free.
Mitochondrial Disease and major sensory integration challenges.
I AM A WINNER… I see them, but they don’t see me. They don’t know I’m watching them as they celebrate with their friends and families. They raise their hands in victory and I imagine what that might feel like. To work, to sweat, to practice and then…to be the best! My friends would all surround and congratulate me as my family stands beaming with pride. For as long as I can remember I’ve wanted to be just like them. Then it happened. I was so nervous. But I had practiced and practiced so when I gave the commands Nils obeyed. When I rode in the hot sun in front of my family and my Alatheia friends I showed them all I had worked for, all I had learned. I did it! I was handed my award. My award. My family surrounded me, congratulated me and I saw a look of pride in their eyes. At Alatheia I am a winner!
Autism, Microcephaly, failure to thrive, epilepsy, genetic chromosomal anomaly, global developmental delay.
I AM ABLE… Should I whoa? I don’t know. Should I hide? I can’t decide. My head swims with instruction and I find I cannot make a decision but I must. I need to just… Breathe. Anxiety grips me as I ride. I hide behind my Sindre, my horse, my friend. I duck my head, hiding behind my long hair. Are they watching me, those strangers right there? But the gentle sway of my horse, the patience of my instructors lulls me, reminds me to just… Breathe. And finally, I can relax. I am able to listen. I am able to make eye contact. I am able to make things happen. At Alatheia I am able.
Chromosomal disorder marked by anxiety, difficulty making decisions and delayed processing.
I SMILE… It’s all over the place. It’s bouncy, noisy, scratchy and distracting. Life with my senses on high alert 24/7 is challenging. Life with sensory challenges, added to how hard it can be for me to explain how I feel or even what I think to those around me is downright rough. To be honest, on most days even cracking a grin falls into the ‘challenge’ category. All day I work to learn, work to play, work to talk, work to just be a kid. You know what? At Alatheia I can smile. I can play and make things happen. For once I can tell someone what to do, where to go, and when to whoa! When I shoot hoops from Blakken’s back I am in charge. At Alatheia I am happy. At Alatheia I smile.
Autism, Sensory Processing Disorder, social and emotional challenges and verbal communication struggles.
I AM NOT DEFINED BY MY DISABILITY… I arrive early for my lesson. I watch the other riders hop out of their cars as my mom lowers my wheelchair to the ground and brings it over to my door. I’m used to my chair by now. I’m grateful. Dad says I have a bit of my mom’s spirit in me. I hope so! He says when something difficult happens, which is most days for me, I have the tendency to ‘girl up and soldier on’. Thanks Dad.
Know what though? I know that inside this body that struggles so hard to do the things most eleven year old girls do without thinking is well…me. The real me. The me that smiles, a lot! The me that has delights in the people God has made, that marvels at creation and laughs, a lot! Oh, I know that most people who meet me for the first time see only the disability. Only the ‘cannots’, the ‘withouts’ or the ‘may nevers’. But just you wait, once we meet and really connect, they’ll see the real me. And I bet we’ll be friends.
At Alatheia things are different. When I get out of the car and into my chair at the riding center you know what I don’t see? I don’t see adults staring at my chair and quietly shushing their children’s questions. I don’t see discomfort and wondering. I don’t see disability at all. I see friends. I see people who really see me. I see other riders who struggle with very different, but just as difficult, disabilities who are A. Maze. Ing. I see who they really are inside. And I always greet them with a big smile. Because at Alatheia I am seen for who I really am…I know I am not defined by my disability.
Spina Bifida with lower leg paralysis/wheelchair bound, neurogenic bowel bladder.
FINALLY IN CONTROL… The earth. It comes up at me. More than one hundred times a day I fall to meet its rough edges, it’s hard surfaces, it’s unforgiving solidity. My own body betrays me as I work to grow into the woman I will be some day. I push, I learn, I try, and always I fall. For as long as I can remember seizures have wracked my body causing me to lose all control over and over and over.
But I fight on.
At Alatheia, riding my trusted Nils, I am safe. My falls are caught, my leanings corrected and I am in control for once. I am the one who motions for, “whoa” and “walk on”. I am the one who pulls hard the reins to change course. I, for once, have the strength, support and continuity to make change happen on my own. At Alatheia I am in control and I am safe.
Severe Epilepsy, Apraxia of Speech, and Developmental Delay.
I’M THE ONE… Mama gets it. Mama sees my yearning looks each time we cheer my siblings on in their games, their activities, their passions. Mama knows what I’m thinking, knows I want to be the one out there scoring, giving high fives to friends and playing MY games. Mama gets it. Mama says I’m taller now. She says I grow a bit every time I get done riding my horse. My Frid.
Once a week my Frid and I play. Basketball, bubbles, matching and sorting. You name it! On my Frid I’m the one who plays it! Once a week my Frid and I, we laugh. We laugh as we circle the dirty arena. We make all our friends smile as we giggle and trot, giggle and trot. With MY friends and Frid, I’m the one who does it.
Once a week my Frid and I are silly billy’s together. She laughs at my silliness and I do my best to make her whinny with me as we work hard together in lessons. When MY Frid smiles, I’m the one who did it.
Mama gets it. She knows. When I’m at Alatheia I’M the one!