a little factoid...she was the first person with a disability to have a reoccurring role on television.
yes, the sentiment is very true, but for this momma, it was a question that hurt too.
after dinner last night, B
naturally, she asked to help.
it is not always easy to allow her to help. her kind of help is not always helpful. she has a rare inherited recessive gene that is causing degeneration or loss of nerve cells in the part of her brain that controls muscle coordination.
the common name for this condition is ataxia. that means she has tremendous issue with balance, hearing, eye movements, speaking, eating and swallowing, writing, walking, and even standing still. she cannot control voluntary muscles well at all.
another fact tidbit: Cerebral Palsy is a form of ataxia.(boy, can you see the teaching theme in this post?)
she asked to help with the dishes. cringe. i thought, not unless everything was non breakable, kid. she does not yet understand she is different or moves differently than others. she is almost completely clueless.
so, she is always hurt when i tell her no, thank you, i've got this.
last night i did not say no, instead, i held out a dishcloth to wipe down the stove and counters. she loves to help and feels loved when you allow her to.
ok, now she feels loved and has my undivided attention.
here it comes! one of those innocent questions that steal the very breath from my body. she looked deep into my eyes with those dark almond eyes of hers clouded with sadness, "mom? why do people treat me like i am stupid?"
rats! not this question again. she has asked it before. several times. each time, i have tried to be truthful, yet gentle. in the past, i have told her, "it is because you are still learning a new language." or "it's because you are older than your classmates, so they assume you are delayed." or even, "it is because you are hard of hearing. often deaf people are thought to be dumb because of the way they speak." we never talked about how being treated like that makes her feel. i can see when she is hurt. but, she didn't have the words to process all this before.
i tried to advocate by calling the school and requesting while B was going to be absent to attend her great-grandmother's funeral, could the school social worker address her class about how B has a disability, but she is very bright? she should not be treated like a baby by her peers. they complied and i have not had this question asked of me since.
i thought i'd solved that issue. guess i was mistaken. half truths are never very good at staving off growing up. the hurt obviously remains.
so, stealing my breath away, i flinched again. ouch! someone must be treating her poorly still.
i turned off the water. alas, the dirty dishes will still be there tomorrow. B needs the truth right now.
i brought her to the computer and played that facts of life episode on youtube.
we talked for a while about how geri was smart, talented, could drive a car, work, love, have friendships...everything everyone else does. she just looks and sounds different. that is where the differences end.
B asked if she was different like that. i then chose to tell her about ataxia. i did not tell her that it most likely will put her in a wheelchair. i did not tell her that she may have a shorter life. those conversations are better left for when she is much older. wait? is that considered a half truth too?? darn! this is going to have to be revisited. sigh...she doesn't need hard news just now. let's let her own her disability first.
i told her that ataxia is her disability and everyone has something that is hard for them to do, even if it is not obvious to others.
it is my hope that she learns how to advocate for herself and educate the ignorant world about how people living with disabilities are not to be pitied, babied, ignored, stared at, or treated any differently than typical humans.
i hope that her brave and serving heart will make a difference changing the stigmas associated with people like herself.
that brings us to this afternoon. i asked her to come to my room for another talk. i try to check in with my kids the day after a heart-to-heart, to see if they have any more questions or need help processing the discussion.
i asked her if she remembered our talk last night. and she said, "of course, mom. that was only a day ago," with a silly teenage eye roll/giggle combo.
i asked her why she thought i had showed her the tv episode. she said, "to teach that people with disabilities should teach people that they are no different."
smart girl. yup. "ok, miss B...do you think instead of letting people treat you like you are stupid, you could teach them and de-stigmatize ataxia?"
her eyes grew round and she sucked in her breath, holding it for a moment. with that surprised look of realization dawning...she whispered excitedly to me, "mom!? i could walk in the hearing walk this weekend to do that!"
yes, my love. you are brave and clever, and so willing to serve your world.
"what a great idea!" i told her. she had already asked to walk in the walk, but did not stop to think of WHY there was a walk4hearing in the first place. "that is exactly why they have these walks. to raise awareness, teach, advocate, and de-stigmatize."
when i asked her how she was going to raise money for the walk, she looked at me and deadpan answered, "beg for it?" then burst out laughing. oh, how i love her sense of humor! she truly is very funny.
i replied, "i think you have enough people who love you, that will give willingly. you will not need to beg."
she ran off, but came back just a moment later with pencil and paper, "who can i ask?" and proceeded to list off several family and friends.
"wait! first let's register you to participate!" i laughed.
if you are interested in supporting my brave, silly, amazing daughter this weekend...you may visit www.walk4hearing.org. click on donate and select find a walker. it is there you can enter her name and show her that advocating is rewarding and important.
want to know the best part of the last eighteen hours?
last night we were both hurt and sad. today, taking action by getting involved with a solution to the very problem that hurt our feelings; has left us giddy and hopeful for the future.
DEAREST HEAVENLY FATHER, THANK YOU FOR REDEEMING THIS CHILD, FOR PLACING HER IN OUR HOME, AND FOR TRUSTING THAT WE WILL TRY TO DISCIPLE HER TO THE BEST OF OUR ABILITIES. SHE IS A JOY AND I REVEL IN YOUR PERFECT CREATION. I AM SORRY I AM NOT ALWAYS PATIENT AND KIND WHEN DEALING WITH HER UNIQUE NEEDS. IT IS A PRIVILEGE TO PARENT HER EVEN WHEN IT IS HARD AND PAINFUL. PLEASE USE HER TO INSPIRE YOUR EARTHLY REALM THAT YOUR CHILDREN WOULD LEARN FROM HER COURAGEOUS HEART. LET HER REFLECT YOUR GOODNESS AND PLANS THROUGH HER SPECIAL ABILITIES. I THANK YOU, JESUS, FOR TEACHING US THAT YOU WERE PERSECUTED FIRST, THAT YOU OVERCAME ALL TO REDEEM US, AND THAT YOU LOVE US THROUGH ALL OUR FRAILTIES AND SINS. THANK YOU FOR SHOWING US HOW TO PRAISE GOD THROUGHOUT ADVERSITY. THANK YOU MOST OF ALL, HOLY SPIRIT, THAT YOU WOULD SHOW US HOW TO FIND JOY THROUGH OUR PAIN. AMEN.