A Video of Ramya Walking

Ramya is doing really well with her walking and we are so proud of her!  For some reason I cannot find my older walking videos of her and I'm bummed because she's made such HUGE strides and I would love to be able to show everyone the difference.  The first videos of Ramya walking were just a few seconds long.  She was too nervous to have me step away and could also only take a few steps before getting tired.  She was afraid of falling and tired very, very easily.  For a while we took a break from walking and just focused on confidence, core strength, and building our leg muscles.  We also moved her from KAFOs to HKFOs (so from leg braces that went to her thigh up to leg braces that go up to her tummy).  We spent over a year just working on all of the skills leading up to walking.  I am proud to say she is now confident enough to take a trip around the kitchen without help!  Her endurance has also increased so much.  It's amazing seeing her transformation!  Here's a video of her cruising in the kitchen....

 

An Updated Video of Madi Walking in her HKFOs Using Arm Crutches

Madi told me that she wants to wear her "up ups" (aka hkfo's) and use her walking sticks to walk down the isle when she gets married (in about 20 years I say ;)).  I told her she better get to practicing!  She's been doing awesome and has been starting to balance so much better. She's now able to take a few steps on her own which is a huge accomplishment! Just a few months ago she couldn't balance, let alone take steps.  I think the therapeutic horseback riding is really helping her with her balance and core strength.  The doctors said she would never walk considering she is an L2 level.  One thing the doctors can't judge when they determine someone's level of lesion, however, is their level of determination; and that is what makes ALL the difference!  Some days she doesn't feel like walking, and I don't force her to, but mostly she really loves being up and mobile.  She's so very proud of herself too!  Here's a video of her and our new PT Kelly....

How Do You Define Someone with Spina Bifida?

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

So many people seem to look only at the diagnosis of someone who 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
-Daughter
-Sister
-Auntie
-Friend
-Neighbor
-Voter
-Licensed driver
-Passport holder
-Traveler
-Frequent Flyer
-Music Lover
-Cat Owner
-Funny
-Loyal
-Kind
-Compassionate
-Witty
-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

son, grandson, brother, nephew

loving, outgoing, athletic

loves to play

loves his friends

stubborn, brave

full of laughter

biggest smile in the world

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



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!

 

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.