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Tuesday, October 14, 2014

How Do You Define Someone with Spina Bifida?

 Handicapped?  Disabled?  Differently-abled?  Crippled?  Confined?

So many people seem to look at the diagnosis of someone whom has spina bifida and use it to define them.  They see the equipment and they cannot see past it.  They hear a child has spina bifida and they say things like, "I'm sorry".

My wish is that people could see that spina bifida does NOT define a person.  A wheelchair, leg braces, arm crutches, catheterizing, a shunt, and all those other extras do not define them; it only makes them stronger and more independent. 

So how DO you define a person with spina bifida?   This is how....

Strong, smart, sassy, hard-working, beautiful, dedicated, funny, creative, loving, artistic, loved, joyful, silly, playful, imaginative, problem-solver, courageous, cheerful, giving, magnetic personality, radiant, student, proud, daughter, friend, and sister

Beautiful, smart, funny, stubborn, helper, hard-working, attention-getter, fun, energetic, creative, lover of books, adopted, prayed-for, fighter, loved, loving, compassionate, caring, silly, sassy, playful, blessing, daughter and sister

Sweet, Sensitive, Shy, Big Brother, Protective over his little sisters, Video Gamer, Loves being outdoors, Loves fishing & swimming, Fun-Loving, Inquisitive, Always Smiling

Mother, wife, animal mom, daycare runner, friend, video gamer, world wanderer, photographer, music appreciator

Joy-filled, strong, determined, sweet, loving, stubborn but head strong, loves music, loves Mickey Mouse and Scout, loves bubbles and being outside, very opinionated and sensitive, loves water and baths, fun, full of smiles, laughs and giggles, has a mind of his own

Every inch of you is perfect. From the bottom to the top. She is fiery and strong willed nothing defines her and nothing holds her down
Friend, Daughter, Sister, Godmother/Auntie, Animal Lover, Nanny, Loyal, Caring, Trustworthy, Loving, Intelligent, Silly, Advocate, Oregonian, High School graduate, Caregiver, Registered Voter, Respectful, Reader, Writer, Amateur Photographer, Determined, Honest, Stubborn, Funny, Unique, Passionate, Strong, Empathetic, Inquisitive, Traveler, Music lover, TV Lover, Advice giver, Sentimental, Romantic, Thoughtful, & Adult with Spina Bifida.

-American of Irish ancestry
-Licensed driver
-Passport holder
-Frequent Flyer
-Music Lover
-Cat Owner
-Native Chicagoan
-Current Florida Resident
-Lover of seafood and wine
-Member of many families (biological, friends, SB community)
- Adult with spina bifida

Comfortable with myself, Determined , Intelligent , Outgoing , Well spoken, Loving, Caring , Strong-willed, Funny, Daughter, Sister, Friend, Blessed , Jacksonville native, Florida girl, Fashionable, Respectful, Important, Wise, Talented, Young, Traveler, College Student, High school graduate, Helper, Encourager , Singer , Songwriter, Gospel music lover, Christ Follower,  Adult Living Spina Bifida , Spina Bifida Advocate , Trendsetter, Happy , Loyal, Independent , Auntie,, Cousin, Registered voter, Optimistic , Faith filled, Friendly

Son, brother, grandson, cousin, nephew, wanted, loved, cherished, adored, ADORABLE, American, Ukrainian, all boy, fast, loud, intelligent, funny, resilient, overcomer, determined, courageous, brave, ABLE, loves music, fun

Japanese by nationality, Filipino/Irish/Middle Eastern by blood, American Citizen by default, Mommy, Grandma, Daughter , Sister, Auntie, Niece, Hard Worker, Traveler, Animal Lover , Creative , Singer, Writer, Great Cook , Goofy, Loving, Empathetic, Loyal, Tough, Friendly, Tenacious, Independent , Passionate, Connoisseur of Cheese (or Cheesy? lol), Resident Mischief Maker, Adult with Spina Bifida

(Lucas preferred not to share a photo on the internet but said...)

I'm a stubborn Irish-German American enthusiastic home chef desert rat Buddhist semi-intellectual over-educated librarian/bookworm/book snob proud American social liberal, so do as you please and don't tell me what to do or what to think, newly activist bife

A child of God, an older sister, a daughter, a friend, I am always willing to help others, caring, loving, gentle, calm, and strong.

Witty, smart , silly, stubborn , brave , happy , outgoing , LOUD, original, determined!

Educated, self-determined, independent, educated, activist, leader, compassionate, caring, giving, witty, visionary, nomad, ornery , explorer, advocate

 I'm a daughter, granddaughter, sister, niece,friend,Christian and volunteer

Son of Christ, charismatic, charming, lover of all sports, surfer, heart for people, strength beyond words, and a dose of Spina Bifida to make it all interesting daily

Mom, wife, friend, Christian, art lover, self-proclaimed comedian

Christian, wife, writer, comedian, lover of life, total goofball, dancer, happy

I am an adult with Spina Bifida, but it does not define me. Here are a few words, however that do: DETERMINED, CARING, HARDWORKING, AND TENACIOUS.

 Strong, wife, prickly pear, sarcastic fierce warrior and defender of the defenseless, writer, crocheter, painter, driven, passionate, intense

 Nine yr old, big brother, blonde haired blue eyed ladies man, train lover, Pittsburgh steelers fan, IPad obsessed, Mario Kart dominator, Pain in the butt, spelling guru, math challenged, momma's boy

Daughter, sister, friend, Christian, witty, educated, independent, empathetic, strong, go-getter, overcomer, extrovert, athletic, practical, methodical and honest

 Spina bifida.... one small part of an amazing whole!

Monday, October 13, 2014

Prayers for Evie

Please continue to pray for my friend Jaime and her daughter Evie (I previously posted their story here... as they are discharged from the hospital tomorrow.  Evie still has a long road of recovery ahead of her.  They will stay in a nearby hotel until the last of Evie's follow-up appointments is complete, which is at the end of October.

Evie didn't pass her swallow study and is currently fed via an NG tube.  In addition to the hotel fees they will be facing (the hospital housing has no openings and the Ronald McDonald house is only for oncology patients), there are now more equipment rental fees since they are out of state and cannot get equipment and supplies from their normal supplier.  They can get reimbursed for equipment and supplies, but have to pay up front. 

I would LOVE to be able to bless their family with the amount they need for hotel.  If you $5 to spare today, please consider giving to help them with their medical costs.  Thank you!!

Sunday, October 12, 2014

Madi talks to Siri... This is What Spina Bifida Looks Like

Most of the time, this is what spina bifida looks like for us... enough said!


Thursday, October 9, 2014

Madi Dancing in Her HKFOs using her Rifton Dynamic Stander... Spina Bifida Can't Slow Her Down!

Madi loves to dance and often puts on "performances" for us.  She's loving her new stander and wanted to try it forward facing.  That, of course, lead to a dance performance.  Today it was "Let it Go" from Frozen.  This girl is just too cute!!  When the doctors told me all the things she wouldn't do, they forgot to mention that none of it would matter because of how amazing she would be :).


Tuesday, October 7, 2014

Our Spina Bifida Awareness this Month

For those of you who are my facebook friends, you may have noticed I've been posting daily pictures to facebook of my gals who rock spina bifida.  You  may have looked at my photos and said to yourself, "Why is she posting these?  There is nothing special about these photos!". 

And you are right!  That is the point!

Yes, my girls have spina bifida, and yes, sometimes life requires some creativity, but the point of my pictures is that most of our days probably look so much like "normal" lives.  We play, we get dirty, we learn, we eat, we go on vacation, we have little adventures, we swim, we bike ride, and the list goes on and on.  Sure, we do those "other" things like therapy and cathing, appointments and surgeries, and sure, the girls do many activities while zooming instead of walking, but the point is that they still do them.

Sometimes I feel that others focus on what we do differently, when the fact is, much of what we do is the same

Here are a few "boring" photos of us from this past year, just living our lives, because spina bifida doesn't mean life stops for us.