questions don't hurt ignorance does

"questions don't hurt; ignorance does," geri said, on the 80's tv show the facts of life. 


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 hung fluttered around the kitchen nonstop. she had me as a captive audience and she knew it.  i was going to be stuck hand washing a mountain of dinner dishes for at least the next 40 minutes. i was all hers.


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.

school lifestyles part 1: S's story

september started and S and B went back to public school. both girls adjusted after a fashion. the long days were exhausting for their poor bodies and the influx of information presented in a new language was mentally exhausting. needless to say, afternoons here were rough on B and the family. many Calgon moments for me in those first few months. where is Calgon to take me awaaaaaay? retired maybe?


things are getting much better with her lately. more on her transformation later. shout out...Praise God!



S positively loves school. she is in vocational training school at the local high school. she still cannot grasp money concepts well, but has mastered first grade reading. we had wondered if she would ever read. mastery of ANYTHING is encouraging to us.


she will plateau at about third grade equivalency, the experts say. reading is helping her to learn English, too. verbally, things are challenging. she only understands incoming language equivalent to that of a 2 year 9 month old. yet, she has outgoing, or speaking, capacity of a 4 year 1 month old. at least that is where she scored a year ago. i would not be surprised if it has changed a little.


so much is lost in translation in our household. sometimes it is hilarious. sometimes it is frustrating. i am sure my forehead is flattening out due to all the head smacking and rubbing i do.  want to know how i know i do it so often? now B has absorbed that mannerism and whacks herself several times a day.


but school, S thrives in. she was promoted to ninth grade and earned high honors grades. woo woo. she was tickled to see her name in the local paper announcing the honor. so far she has shredded paper at Town Hall, worked in her class's student bake/snack shop, and she has worked at B's school book fair.  fun!




one of her favorite things is the unified school programming. the basketball is affiliated with Special Olympics. seven local school's special education classes participate. the teams consist of a handful of students with special needs.




additionally, there are typical student athletes that pass and dribble the ball, but are not supposed to shoot the ball. they try to leave scoring to the players with special needs. S has come home with several medals from Special Olympics. the games are fun to watch and imagine our surprise to find our friend refereeing the tournament. that was neat.

there is also unified art, taught by a friend of ours. how blessed are we-to have S connected in several areas of her community. we know her art teacher through her involvement at our local CSA, Grange, and library. her teaching is reaching our daughter.  i love seeing what S creates. our house is decorated by it. and recently, she has added a dog and bunny to her drawing repertoire. all of us gave her high praise for drawing new subjects. it used to be just flowers and bees.

this past week, i was asked to speak at the board of education meeting on behalf of the unified basketball program.
during my time to speak, i explained that S came to us as a severely delayed, fearful, tearful, and shy child.  this program helped her really break out of her shell. she used to be a "ghost" in our house, keeping to herself except for meals and tv. now she interacts and plays with us. she comes out of her room often. she used to use just one or two word phrases. last week she came home from school and told me how she fell at school and her teacher saved her-using three sentences! amazing!! talk about being social...when i pick her up from school, mainstream kids wave good bye calling her by name and sometimes offering a high-five. it makes me feel good knowing she has a safe and nurturing place to grow. 


i was told later, that many were misty eyed after i spoke. aw shucks.


next, several students were invited to share their experiences in winter school sports.
 
when the captain of the varsity basketball team spoke, he said, "i'd like to share with you about our basketball season, but first, i want to say S really impressed me. i had never participated in unified PE before, but this year i tried it. S was my partner the first day and was shy, but then after that, ran up to me every week excited and laughing." he went on to explain how much she changed him and how much she means to him. i was almost in tears.




next, the girls' varsity basketball captain took the microphone. she also started by acknowledging S. i was floored. those students were invited to speak about their teams. to take the time in front of dozens of busy people to first honor sweet S before reporting on their own teams was classy. i melted.




after we were all excused from that part of the meeting, several others came up to tell me their stories of S. 




later, i sat in my car stunned. i had been so concerned with how her community affected her that i missed how she would be impacting them. what a blessing to be shown a glimpse of her life. i marvel at how God placed her here. how different her life in China would have turned out.




here she is valuable. she is loved. she is worthy. she is growing. she is witnessing His great Love and Grace. she is redeemed.

THANK YOU LORD GOD. YOU ARE SO PERFECT. ALL YOUR PLANS ARE MASTERFUL. I MARVEL AT YOUR WISDOM. YOU GAVE THIS WORLD A POWERFUL GIFT WHEN YOU ADOPTED MY DAUGHTER. THANK YOU FOR LOVING HER AND ALLOWING HER A NEW LIFE WHERE SHE CAN BE LOVED AND REFLECT YOUR MIGHTY SOVEREIGNTY. PLEASE CONTINUE TO BLESS HER WITH YOUR SPIRIT SO THAT SHE MAY BLESS THE REST OF US IN HER VERY SPECIAL AND PRECIOUS WAY. I EXALT YOU JESUS FOR REDEEMING US ALL. AMEN.

 



cool summer camp

ahhh. it feels good to have love and support shared here again. thank you friends.

this past summer, we were blessed with a wonderful opportunity. our local children's hospital told us about a really neat summer camp for children with special needs. they teach children to ride two wheel bicycles. nearly 80% of participating children are riding independently after a one week camp. check it out and share it with your friends. they operate all over the united states.

learn to bike summer camp list of selected 2014 cities

sad problem was... it was not in our budget to have B and S participate. but our God is a Mighty One and showed us a fabulous kids' charity who stepped forward to gift the children the icanbike camp.

together with local police explorers (student police corp), firefighters, police officers and iCan Bike program representatives; they truly created a fun, relaxed, cohesive team to teach the kids. this is what it looked like...

B on an early stage bike.

 

they offer several bicycles with whatever adaptation the child might need extra assistance with. once a skill is mastered , the kids move up to another type of bike. eventually most graduate to the goal of two wheels.

 

the program creates a very calm environment, so children with sensory issues can learn free from too much extra input. there were several children with autism that had a rewarding experience. one of my hubby's friend's sons who has autism was in the camp too. we were glad to see a friend sharing the fun. small world.

 

they even ask that the mama-razzi stay outside to capture photographs. i sneaked a few INDOORS though!

 

once the kids master a tippy wheel thingy, they graduate to a typical two wheel bicycle with an adaptive handle for the trainer to help steer and offer counter balance.

 

S moved outside to the parking lot on day 3

 

 

 



B made it outside on the final day

but she never did master riding well enough to ride by herself. we did not expect she would. her neurological deficits are still too great to overcome.

i did not purchase a handle from the organizers! sure take one home to help her practice. uhhh... i considered it and then had this vivid daydream...

scene opens with me wrestling bicycles into the trunk of my sedan for three separate trips to the local elementary school parking lot. all to get four kids and their bikes and gear to an appropriate place for riding.

it is midsummer-the only time we might have to go on an outing of this caliber. i get to the lot with the last load, greeted by my excited children. i am now a sweat hog, but its ok, as long as the kids have fun. right?

i spend twenty blistering minutes baking on the asphalt assisting each kid into their safety gear. helmet, gloves, elbow, knee pads.

just as i hitch my back straight from the crippling bent position; i see B waiting patiently, longingly, asking me with her eyes...mom, please run beside my bike using that nifty handle thingy?

i consider that sweet face. her three sisters are happily laughing while zipping around the varying lots. how could i say no?

so i run a few laps behind her and as i start to see my heart pounding red in my eyes, it dawns on me why the icanbike program has teams of three volunteer spotters, per child, to switch off every few minutes.

i am by myself. i have already performed 45 minutes of heart pounding aerobic activity bringing the bikes to the lot and then had to use fine dexterity in a hatha yoga environment to dress them. it was turning out to be some nightmarish nod to a Twilight Zone-ish Combined Olympic event.

as i start to stagger into welcome darkness, i gasp, "everyone time to gooooo." 

fade to black.

the next day's paper displays a front page picture of four children riding their bikes phalanx style down a rural highway, towing their heat stroke victim's mother's car behind.

i smartly snap back to my senses and graciously thank the lovely volunteer for the offer, but,  no, thank you. we will not be purchasing the adaptive handle for just $XX.00!

the last day of camp, S, was tearing around by herself. B had two to three seconds of independent riding at a time. they both did a great job. and had lots of fun.

 

the volunteers threw a graduation party for the kids. each one received a gold medal, goodie bag decorated by their team, and some cool stuff to go inside. they also were given commemorative tee shirts.

 S with her team

 

it takes a village of heroes to raise bike riders!

  

 

the program was well thought out, accommodating, and successful. thank you to all who volunteered your love, time, and cardiovascular systems to make it a great experience.

B even asked to try again this year. maybe God will find her another donation to make that possible. we'll see. she will most likely never learn to ride a typical bike, but she can keep trying. you go girl!

flip for it

last spring i was having trouble processing all my stress. stress? you say? whatever could you mean? hahahhahhhaha...

we knew adopting older children would bring many challenges. heartache. tears. we knew it would highlight our lack of "parenting hurt children" tools. we knew it would affect our biological kids. extended family. friendships. we knew it would challenge our resources. money. time. patience. logistics.
 
some professionals have accused me of being starry-eyed, naïve, and ignorant of just how drastically things would change. that i should have known better. friends begged me not to adopt. some family members were less than supportive...one even telling us on Christmas Eve before we brought the kids home, "your lives are over."

i've got news for all of them. we were forewarned. we heard it. we ignored it all! so there!
 
nothing could tear us from the path God set us on. we walk this journey in complete and absolute Faith and Trust. He told us to do this. we were not trying to fulfill some egocentric need. we were not keeping up with the joneses. we were simply living in obedience to the Word.
 
have things been as bad as all those doomsday predictions? no, not really. far from it.

we have had copious amounts of laughter, joy, bonding, many blessings, and an exponential growth in love production.
 
but adoption is two sides of the same coin. you never know which side it will land on from day to day.
 
we have also had major issues with defiance, lying, retaliatory behaviors, self-punishment, very low self-esteem, and refusal to take care of personal hygiene.
 
news flash...all normal for kids with institutionalized backgrounds.

all of that combined with a father who works inhumane hours for an all but poverty level salary-thus leaving a mother to almost single parent with limited resources, two children that did not get along well at all, juggling three different schooling situations, and being tuned into the adoption community...made for a stressed out mom.

my "parent support" therapist, Mary, suggested i drop off the scene for a while. perhaps grieving all my blogging community's trials and tribulations was creating a more emotionally challenging environment than i could handle. and seeing that i had a great support in Mary, i didn't need to blog as an outlet.

i gave it a shot. i cut myself off from the blogging and things did get to a more manageable level. 
 
it was not my intention to cut our family off from those loved ones who stayed connected to us through our blog. i now see that ten months of no updates have left some wondering how we are. it was self preservation on my end, but almost mean to everyone else who loves us. i apologize.

things have been hard, will continue to be hard, and show no signs of miraculously becoming easy.

we didn't sign up for easy. we signed up to have our hearts broken as God's is, dying to our own selves to serve Him, and sacrificing the easy life for a better one.
 
does being hard have to mean that things are negative? NO WAY. right now i can hear giggling and fun coming from the children's room. i have had my most hurt kiddo curl up in my lap and quietly say, "mom? i feel safe here." we have had so many amazing blessings over the last ten months.

i will try to share them over the next several posts including many pictures and videos of our beautiful family.
 
so i am choosing to return to my blogging community. why now?
 
well most of the support i had last year has gone away. my beloved grandmother passed in may, my amazing therapist moved on, my support group fizzled, my marriage almost died (don't worry...we are reviving it and prognoses looks good), several friends lost touch, and the kids stopped going to all outside therapies of OT, PT, and speech therapy. those therapists were not only cheerleaders to the children, but an enormous part of my team. i grieve all these loses still. it was a tough year. i really could use an outlet to process my feelings again.

but the most important reason i resume my blog is out of love and respect for all of you whom have prayed and loved us through that connection. i hope to honor you and inspire you through our Faith walk.
 
i will do my best not to be a downer. i will vent. i will get preachy at times. i will share what some feel to be an invasion of my kids' privacy. i will be sporadic.
 
but i will also infuse this crazy life with humor and light. sharing as often as i can.

i do not know which side the coin will land on from day to day. but odds are in my favor that it will never be all bad or all good. if i just hang on to the next flip of that coin...things will change again.
 
He has not left us. He never will. He is faithful forever. we cling to that during the hardest times. it makes the good times all the sweeter.

LORD, EVEN THOUGH I AM HAVING TROUBLE PRAYING A LOT RIGHT NOW, PLEASE KNOW HOW MUCH WE LOVE AND HONOR YOU. HOW MUCH WE ARE THANKFUL FOR YOUR PROVISIONS. WE THANK YOU FOR CREATING AN AMAZING LIFE FOR US SO THAT WE MAY WALK THIS EARTH WITNESSING TO YOUR GREAT LOVE AND THAT OTHERS WOULD SEE OUR WORK AND PRAISE YOU FOR ALL ETERNITY. PLEASE BLESS ALL THOSE WHO READ THIS BLOG AND LOVE THEM AS THEY LOVE US. THROUGH HIS PRECIOUS AND HOLY NAME, JESUS CHRIST. AMEN.