The boy who loves her.

Spreading awareness, by my personal definition, does not revolve solely on educating you on what it is, how it happens, how it’s managed. It’s not just about the medical knowledge, the equipment, the therapies. Awareness is spread when you make a personal connection with spina bifida. When you feel what I feel, if even for a fleeting moment. When you can relate, when you can imagine, when you can almost tangibly feel the value of our experiences and feel a twitch, a pull to do something – anything – then awareness has been spread.

That is my goal. I tell you about me, about my family, our story in hopes that you will make a personal connection with spina bifida. It’s similar to my philosophy on education. It’s more than just memorization and learning the facts. Feel it, experience it, connect with it – then you’ll remember it and may even do something with it.
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463876_806646622252_648656232_oThe boy who loves her.

He is a child that feels deeply, feels quickly. His love is profound, his anger is passionate, his tears are heavy and complex. He is a child that looks you in the eye and will feel what you feel – crying with you, laughing with you, sitting silently with you. His emotions are chaotic, but they are his and they are genuine.

His journey and experiences with spina bifida have been exponentially different than mine, than yours, than hers. While we’re aware and have the ability to comprehend the medically-stained words and realities, all he knows is that he has a sister. And that he loves her.

To have his perspective of her, to see her as he does, would be a treat. To slip into his thoughts and experience her without the attachment of the diagnosis, the worries of a mother – it would be amazing.

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Photo by Joanna Penny Photography.

The boy who loves her.

He is different than most almost-4 year olds and that is because of her. It started young. He didn’t know she was his until she was nearly 20 days old and came home from the place that kept his mother such long hours. He didn’t know how much he loved her until then, the moment when he realized she was there to stay. An intricate transition for someone who at the time had only been earth-side for about 17 months.

He instantaneously (and unknowingly) soothed his mother’s worried heart by freely showing how he deeply he cared for his sister. The unprompted hugs, kisses, affectionate body slams. They slowly peeled away the hard layers of anxiety that had built up around his mother’s chest during pregnancy, when she wasn’t sure how her sweet, curly-haired husband clone would cope with no longer being the only one.

His love was deep. Is deep.

1268997_10100226260824002_492869581_oHe is creative. A dancer, a builder, a lover of imaginative play and elaborate stories with thick plots and meaningful characters. He has is own set of needs that are as significant and important as his sister’s. His aversion to crowded spaces, his adverse reactions to invasions of personal space, his strong emotional response to over stimulation, loud noises, fast talking. He’ll cry, scream, react with his body – but never at her.

She could get in his face and pull on his hair, cry at him, scream at him, and he would just say “silly Rora”. He’ll try to make her laugh, give her something to play with, find her snack.

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Photo by Joanna Penny Photography.

The boy who loves her.

Once, out of curiosity, I asked him a series of questions. Is Eliora different? Is she sick? Is something wrong with her? He said “no” the first time, then a sassier “no” the second time, and then laughed out a “no” the third time. I’m sure he thought it strange that I was asking such absurd questions. His Rora is none of those things.

He’s the boy who doesn’t see the wheelchairs, the arm crutches, the braces. He sees beyond that, sees the person.

He’s the boy who won’t notice the physical differences, the scars, structure of your face. And if he wonders or wants to know, he’ll ask without using words like “weird”.

If your verbal skills are different than his, if you have your own way of being mobile, if you don’t look him in the eyes – that’s okay. He’d love to play with you anyway.

And that’s because he loves her and doesn’t remember a time without her.

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He shows his love for her in ways that extend beyond words. If she’s upset, he’ll try to make her “silly” – his way of saying he’ll make her laugh. If she falls over, he’ll pick her up. If she can’t get to something, if she can’t reach, he’ll help her out. If she’s genuinely sad or hurt, he will cry with her. If someone is upset with her, he’ll tell them to speak to her nicely.

But he’s starting to notice things.

Having learned to go to the potty, he wonders if she will. Having learned to ride a bike, he wonders if she will. He wonders if the baby that is coming will be able to crawl and walk. He asks why we have to go to the doctor again. Genuine, reasonable questions that we answer openly and honestly.

It’s not that answers matter to him, that they will determine his feelings toward anything. They are sincere questions full of wonder, and he accepts the answers with a nonchalant attitude, simply satisfied to know the answer.
1618280_10100329914690822_292657037_oThis sweet boy, my first child. Asher is the boy who loves her. And she loves him.

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You and Me

Did you know we are the same?

I was not catapulted into some higher level of parent status when I birthed a special needs daughter. I wasn’t suddenly special, stronger than you, more capable.

We are the same.

Our experiences may be different, but we both cry tears for our children. We both celebrate their most seemingly trivial accomplishments. We both let laundry pile up and let our kids watch some Netflix when we need a break.

I may battle through nights at the hospital, but you battle through nights of constant wake-ups and “Mommy, I can’t sleep”. They’re both exhausting, they’re both hard work. We both get frustrated, we both lose sleep.

Photo by the lovely Joanna Penny Photography.

Photo by the lovely Joanna Penny Photography.

We are the same.

Some tell me they don’t know how I do it, that they could never do what I do. But did you know… that you already do it? We are both doing the same. Your child has needs, my child has needs – and we are meeting those needs. We are getting things done for our children. No matter how different those needs may be, they are just as meaningful and just as much work.

You care as deeply as I care. You work just as hard as I do, you make hard decisions, you go through difficult transitions. I need hugs, and so do you.

But thank you for telling me I’m strong. Sometimes I don’t feel it and it’s so kind of you to remind me.

Thank you for telling me I’m your hero. I feel the same way about you.

Thank you for telling me I’m super woman, but don’t forget that you are, too.

I’m so glad I inspire you. Just remember that you inspire others around you as well.

Thank you for being so willing to help me. Sometimes I need help, a lot of help. Just like sometimes you need help, a lot of help.

Just as I ask you to not feel sad for me – there’s no reason to feel that way – I also ask you to not hold me to a different standard or status of parenting. We are the same, we are parents to beautiful children that love us deeply. We would do anything for those children.
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Not all special needs parents may share my feelings. But here’s the thing – I don’t ever want my friends to feel that what they experience, the struggles they face, the tears they cry are incomparable to mine or are any less meaningful than mine.

You all are so sweet to acknowledge that what I do is hard, but it’s part of my life – it’s part of our normal. And our normal and your normal are equally significant.

For my dad

On May 17th in 1944, a multitude of historical events occurred including:

- Allied air raid on Surabaja, Java
– Chinese/US Armed Forces take Myitkyina Airport, Burma
– General Eisenhower sets D-Day for June 5th
– Operation Straightline: Allies land in Neth, New-Guinea
- Fernando Rodriguez was born (– that’s my dad!)

It’s kind of funny to me that the events that happened on the day of my father’s birth are referred to as “historical” – bygone, old, ancient. Although the number 70 sounds old, my father – Fernand0 – is anything but. If you met him, you would agree. Aside from the gray hairs his stress-inducing children (that would be me…) caused over the years and his large old-school metal framed  glasses, he doesn’t look like he’s aged since some time in the late 1980’s. Okay, maybe mid-90’s. The sun and elements may have worn his skin down a bit, his Parkinson’s may have his hands subtly shaking at all hours of the day, his eyes may look tired, but those are just minor physical things. His spirit, his heart, his mind – they’re all still incredibly young, strong, bold, and full of life. He’s going to easily live to be over 110. I just know it.

And now, a letter to my dad.
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Papi,

I’m going to do my best to translate the warm emotions and feelings I have into words that will truly communicate how much I love and appreciate you. If there’s something I’ve struggled with my whole life, it has been the ability to communicate how I feel – especially to people who matter. But I want you to know, I want everyone to know how profoundly proud I am to say that I’m Daddy’s girl.

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Thank you, Daddy, for showing me how to love deeply. Your love for us isn’t always expressed in words, but it doesn’t need to be. It emanates from your very being and cloaks us so intensely that we feel it, your grandchildren feel it, and outsiders can see it.

Love is the way you patiently feed Eliora, spoonful after spoonful, while telling her sweet things encouraging her to eat. Love is the way you patiently sit with her, helping her scoot around in circles,  not only keeping her safe but making her feel safe. You never see obstacles, road blocks, or giant brick walls when it comes to medical equipment she needs. Instead you say “no problem, I can make that”.

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Love is the way you call me everyday just to say hi, to check on the kids, to tell me a story. I’m horrible about calling and returning phone calls, and while you may lovingly call me out on that (rightfully so), you never hold it against me. You just keep calling me and let me know you’re always thinking about us.

Love is the way you make lunch for BJ every single day so that he eats something at work.  Love is the way you see a need of ours and you meet it, even if you can’t afford it. You do it anyway.

Love is the way you wash Asher’s hair so gently and carefully so that he doesn’t cry or get overwhelmed. A task that is impossible for most everyone except you. Love is the way you follow him around, giving him everything he needs, making sure he lacks nothing.

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Thank you, Daddy, for teaching us about excellent work ethic while simultaneously teaching us about sacrifice. I’ll admit there are times I felt sad that my dad worked day and night, but my heart is full because I see, know, and understand everything you did for our family, all the sacrifices you and Mom made to make sure we ate, were clothed, had shelter, and that our needs were met.

I cannot imagine the struggles you faced as a man with many skills yet hindered by a language barrier. I cannot imagine the guilt you may have felt as you missed activities and interaction with your children. I can’t imagine the financial burdens, the constant stress, the hardships. But know that it was all worth it. Everything you did, all the sacrifices you made, all the hard physical labor you put in over many, many years was all worth it. I have such a strong admiration and appreciation for you, for your motivation and drive, for your dedication and determination. I wouldn’t change my upbringing for anything. It was perfect and I had, still have the best dad.

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Thank you, Daddy, for your funny sayings, your life lessons, your purposeful stories and cautionary tales. My favorite one will always be about procrastination – if you have to eat one orange every day and you continue putting it off saying “I’ll just eat an extra orange tomorrow”, you’ll one day be faced with 30 oranges and you just can’t eat that many. I may have shortened it a bit, but it’s one I have saved up to use with my children when they are older.

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Thank you, Daddy, for always believing in me, challenging me, and supporting me in everything I do. You always ask about my business, my hobbies, the things that fire me up. You foster my creativity by talking to me about ideas, about possible business ventures, about your own hobbies and crafts. You make me feel like I’m capable of doing anything and I know that you’ll always be there for me.

You never fail to make me feel special, even when I’m falling apart and feel like the world doesn’t hear me or see me. Thank you.

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You have so many gifts and talents. You can find a solution to absolutely anything. If I come to you with a problem, you find a solution and make it seem so clear and simple that I wonder how I didn’t think of that in the first place.

You can make anything out of anything. You see potential in every day items, you see what something can become, you don’t view things as trash but as a tool or supply for something great. Your imagination and creativity is absolutely amazing with skills to match.

You are passionate and full of heart. I can see it in the way you interact with others, in the work you do at any job you’ve held, in the way you cook your one-of-a-kind meals, the way you craft and build the items you make for Eliora. When you do something, you give it your everything.

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You never hold grudges, you forgive and forget easily, you give second and third chances. This is one of my favorite things about you. You open your heart even after it’s been hurt, you don’t remind us of the hurtful things we’ve done, you just move on and look to the future.

I am so blessed to have you as my father and so thankful that my children have you as a grandfather. We love you dearly and wish you the best 70th birthday.

XOXO
Priscila (plus BJ, Asher, & Eliora)289882_724306432652_957403782_o

Hello, everyone.

Restless, frustrated. And somewhat defeated.

That’s the emotional state she reaches most days at around 1:00 PM or so, right after an unsuccessful attempt to get two adorably dependent human beings to eat something somewhat nourishing. But the refusal to consume anything but chocolate graham crackers in the shape of bunnies is absolutely insurmountable. Diluted juice and chocolate bunnies is lunch. Just kidding, the juice isn’t diluted.

Despite her insomniac-like behavior and ability to watch back-to-back-to-back indie films until 3:00 AM while “working”(albeit rather distractedly if at all), she still wakes up in the morning with rose colored glasses, fingers crossed that her husband will change some diapers before heading to work, and with hopes of accomplishing something – anything – today.

But as the day continues, today specifically, that “something” becomes less and less, until eventually the goal of the morning is just to brush her hair and put on some pants. That’s it. If she can accomplish that, then today is not wasted.

You see, there’s children. Two of them. Two perfectly molded creatures with wild hair, fair skin, and agendas that often conflict with that of their mother’s.

The boy, the three year old, wakes up excited proclaiming “it’s light outside!” Everyday, every single day, he is overwhelmed with elation simply because the sun decided to rise. The tech savvy toddler proceeds to run to the living room, turn on the TV, and watch some mainstream programming designed to teach him that forgetfulness is okay (thanks, Special Agent Oso). And from that moment on, he’s fine. He’s content. He won’t eat the waffles, peaches, or other breakfast-y treats his mother parades out of the kitchen, but that surprises no one.

The girl, the one who (despite her mother’s state of denial) will be turning two in just a few months, wakes up smiling at the person she sleeps next to on most nights. Her mom smiles, she smiles, they cuddle for a second, and then dad whisks her away for a quick diaper change. Dad then leaves, mom is up, the Keurig is put to work, and the little girl eats – you guessed it – chocolate bunnies.

So, why is it that the woman who bore these sweet babes succumbs to these immense feelings of restlessness, frustration, and defeat by early afternoon? Are the children inordinately difficult or mischievous? Well, not really, no.

It is clear that no cleaning, working, or any other such activity is going to happen. She considers lunch time a defeat and being in the apartment is just a reminder of all the things that need to be done… but will not be getting done. These clingy children just seem to need her, to demand her, to pull at her, scream for her.

It’s almost as if there is a mental fog. There’s a mental fog that settles in sometime after she’s had her morning cup of coffee and starts trying to do stuff. This fog that ends up overtaking her when she’s full of energy, but has to put away her mental to-do list because the children have other plans for her.

So she decides – let’s go somewhere. Anywhere.

She goes through the motions of dressing her children. Onesie, pants, socks, sweater. Wait, it’s cold. Leg warmers. T-shirt, hoodie, jeans, socks, cool Star Wars shoes.

She opens the door to the stairs leading down to the garage of which they live above, and descends with baby girl in arms and toddler in tow as he’s counting the steps. She feels slightly frustrated that he’s taking his time, but she knows if she hurries him he’ll just freeze, so she lets him be and thinks about where they’ll go.

Once they reach the bottom of the steps, she dashes to the car, pops the doors open and tells him to climb inside. She puts the little one in, swiftly buckling her into the nearly expired car seat, making a mental note that she needs to purchase a new one and wondering why the boy hasn’t climbed into the car yet.

Before closing the door, she tosses the diaper bag in, accidentally spilling the contents of the back pocket on the floor. Oh, well. She’ll get it later.

And then she sees him.

His identifiable crazy curly hair catches her eye and begs her to watch him. One, two, three bounces, a near slip, and he’s in the car. She sees him smile his single-dimpled smile that shows off tiny teeth that he inherited from his daddy. He’s happy because he found a fun toy to bring with him on their journey to who-knows-where. And he looks at her, she smiles, and he says “Hello, everyone.”

“Hello, everyone. I’m here. Mommy, I’m here.”

Isn’t it funny that on any other day she would have just walked on over, rushed him, plopped him in his seat and strapped him in… but today she stopped. Today, she froze long enough for her son to tell her something she needed to hear. Little does he know that his mere announcement of having entered the car was so much more than just that.

“Mommy, I’m here.”

She knows she has a problem.

She is inflicted with the inability to control her focus, she’s tunnel visioned, she can be obsessive. There are times where she can turn this off, she remembers what’s important, and she is present in the moment. Then there are times like today where she lets the fog cloud her ability to see her children, to realize that the to-do list doesn’t matter, that the work, the cleaning, all of that can wait.

“Mommy, I’m here.”

His dulcet voice resonates so deeply within her and she wonders how many times this has happened, how many times she’s gone through the motions, fed them breakfast, sat with them, dressed them, but was not fully present and aware. How many times was her mind focused on the work that needed to be done, the tasks that needed to be finished, the errands that had to be run?

It doesn’t matter how many times, it just happens. She knows it happens, it happens to everyone. The frustration, the restlessness, the defeat. It’s human, it’s real life.

But she’s just thankful for the moments of stillness, moments where the rest of the world is turned off and she’s focused on what matters. It was a moment when she chose to be still, chose to be present, that allowed her to open her eyes, her ears, and her heart and be reminded that her children are here. They are here, they are now.

The rest can wait.

The girl…

Soft, fragile fingers on a miniature hand gracefully touch the tip of my nose, pat my lips, and rest on my cheeks. An ever so sweet exploration, sign of affection, her way to communicate and show content.

Words are hard to find, hard to form for the girl with little hands, little toes, button nose. But it will happen one day. Her voice sometimes finds her, a babble emerges. She can cry, she can scream, and sometimes she can laugh and even sing. But when her voice cannot form the words her peers are expressing, when she has no way to clearly state what she feels, what she needs, what she wants…. the girl’s hands speak for her, let her be known.

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She’s angry, upset, why will no one hold her? She fists her hands, slams them down, releasing her frustration on the couch cushion where she sits.

She’s hungry, she’s parched, longing for her brother’s mouth-watering treats and juice-filled cup. Her seemingly fragile hands suddenly show the strength of ten thousand toddlers as she snatches his straw or snack bag away. Then, as an element of surprise, she sticks a cracker in her tiny mouth and smiles a big smile to show us she can do it herself.
Eliora eating

She’s tired, exhausted from a long day of snuggles and play. Her hands let us know by rubbing her eyes… and nose, and cheeks, sometimes the hair.

Oh, the hair. Headbands, hair clips, elastic ties, velcro… nothing will tame the beast that is her curly, wispy, perpetually tangled hair. The ringlets frame her face, kiss her eyes, and she wears them proudly. Accessories are not always welcome, swiftly removed by lightening-speed hand motions that knock them out of place, followed by vigorous head shaking to finish the removal process.

Rora and the train
She’s lonely, overwhelmed, unsure of her surroundings. Her once too-weak arms raise her hands up so that they can open and shut, open and shut, open and shut, beckoning someone to hold her, comfort her, give her a place to hide her sweet face.

She cannot fall asleep, is restless and fussy. Her hand finds yours and holds it tightly.

And now her hands are learning new tricks, showing us her strength, her personality. They extend outward to hand you a toy, touch your face to say hello, dump a  bag full of crumbly chips, explore the inside of a sippy cup with no lid. They give her independence, an opportunity to play without the help of others. They let her learn, examine what is around her, reach for new things. They let her interact, be a part of something else, join in on the fun. They let her play peek-a-boo, hiding her eyes – though one is usually peeking out. They are learning to let her move, resting on the wheels of a homemade chair, spinning her in half circles and making her feel accomplished.

Wheelchair Eliora

There was a time when her hands knew nothing but to stay clenched and by her side. They did not know how to help her communicate. They could not feed her, let her play, grab objects, touch her mother’s face. Her arms could not lift them and help her protest bows, nor could her arms and her hands support her sitting.

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But there are miracles. There are teams of exquisite medical professionals, prayer warriors, and proactive therapists, family members, and friends. Those who help this girl redefine spina bifida, show her that regardless of what she can or cannot do or say, she still has the world at her fingertips. Figuratively and literally.

The girl’s sweet hands tell us a story. They prove something to us all. No matter what the circumstances, no matter how things may seem, anything is possible. They teach us to celebrate the little details, to find the blessings in everything.

What will things be like for the girl, the one who was purposefully chosen to have a neural tube defect? Well, it will be wonderful. It will be fulfilling. It will be anything she wants it to be.

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Oh, this girl. Eliora is the girl with a smile on her face, the one who loves pasta with sauce, the one who touches my nose, my lips, my cheeks to tell me she loves me. That is all.

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Stars with Scars

Is it strange… that I love Eliora’s scar? There’s something beautiful about it, but maybe I see it that way because I’m her mother.
ScarI also love her crazy, frizzy, impossible-to-brush hair. And the way she chews food. It makes anything look delicious and worth trying. Both of my children bring me so much joy, fulfillment, purpose. That’s not to say that I don’t have my moments… the ones where I have to momentarily leave the screaming party, sit in the bathroom for 10 seconds and breathe. Moments where pulling my hair out sounds like a perfectly reasonable way to handle a grocery store meltdown.

I’ve gone months without writing and that’s a shame. I really love doing it, but I function in a perpetual state of tiredness. Sometimes  I just can’t find the time to sit down and write. That’s okay. It’ll happen one day.

Today, I am blowing the dust off this blog site to write about that beautiful scar, the one that’s so perfectly jagged and dimpled. Eliora’s not the only one with a scar like that. Each year, there are about 1500 babies that will have a similar scar. And there’s probably hundreds of thousands of people around the world that have at least that in common with one another.

I’ve said it a bazillion times – spina bifida differs case to case. But the one thing they all share is scars.

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This year we’ve formed a team to help raise money for the Walk-n-Roll of Georgia. This event serves to raise money for the Spina Bifida Association of Georgia, an organization that wears many hats. They provide support, social events, educational activities, resources, assistance, and the list goes on. We, the Bensons, have directly benefited from the myriad initiatives SBAG pursues each year. And, for that, we are thankful.

The Stars with Scars team is comprised of some of our closest SB friends, friends that we’re so grateful are in our lives. We’re here for one another to celebrate joys, for a shoulder to cry on, for a word of encouragement. We all can relate to one another, team up to find answers, vent frustrations, and cheer on our children as they redefine spina bifida on a daily basis.

So our team is coming to you, asking you to support our local Spina Bifida Association by donating any amount you feel led to give. Whether it’s $5 or $500, or you just feel called to spread the word, we are grateful. So, so grateful that you will be supporting our children, helping SBAG continue to provide resources, assistance, and SB education to individuals with SB, their families, caregivers, and any one who works with individuals with SB.

To donate on behalf of Eliora, follow this link: http://www.tinyurl.com/walknrolleliora

With great love,
Priscila

Eliora SWS CollagePhoto credit for 3 photos in the right hand column: Joanna Penny Photography. Beautiful logo by SB dad Rick Hoeye.

 

Some News

This little girl is sitting next to me, playing with all sorts of goodies her brother brought her – crayons, maracas, trains, plastic containers.

ImageYesterday, we saw Eliora’s neurosurgeon as a follow-up to her recent hospital stay. While hospitalized, Dr. Brahma did the best he could to rule out any possible neuro issues that could be causing her loss of appetite, sporadic vomiting, and motor delays. He was confident, as were many other docs, that her issues were GI related.

Eliora’s therapists wrote a letter detailing her lack of progression and explaining their concerns. Dr. Brahma was very thankful that they had sent that letter and felt it gave him a better understanding of what’s been going on with Eliora.

He feels it best to go in surgically to take a look at the posterior catheter leading to the Dandy Walker cyst in her brain.

This surgery will be taking place in a couple of weeks, after we visit Virginia for what is to be a lovely wedding.

It will be Eliora’s 4th shunt revision and 7th surgery.

Dr. Lewis, her GI doctor, will be performing an endoscopy during the surgery. 

There’s a chance the second shunt catheter is fine, but they won’t know unless they go in.

I’m currently experiencing a lot of emotions, one of which is gratitude. I am grateful that Eliora is under the care of excellent medical professionals. I am also feeling uneasy, but what parent wouldn’t be.

No matter the challenges, I wouldn’t trade it for the world. Eliora is sunshine, she is strong, she is worth it.

Her page: Raising for Rora.

The Details

Today, Asher called Eliora cute… and he’s quite right.

Bedhead Eliora

This shot of the the little lady was taken about a month ago, right before things changed… really changed.
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Anyone who knows me in person, through Facebook, on Instagram, or via this blog has most likely heard Eliora’s story. If not, then you probably don’t get online much. Maybe I share too much, talk about my kids, about her conditions too much. But, on the flip side, I’d like to think that I’m helping everyone expand their horizons a bit, learn about and experience the life of a special needs baby and her family. I hope everyone is learning a little bit about spina bifida, hydrocephalus, and all the little medical details. I truly hope that our story helps those who are not directly impacted by spina bifida, or any other condition, understand what we go through, relate a little better, and feel less awkward when you or your family is around a non-verbal child, a child in a wheel chair, or a child who perhaps seems a bit different than the rest.

Today’s post is serving as an overview and an update – an overview for those who are just tuning in and an update for everyone who is following along. For a more in depth story – click here.

Just before Asher’s first birthday, in 2011, we discovered that the sweet little girl we were expecting had spina bifida. My husband BJ can tell you what an emotional experience it was, how stunned we were just to hear that the baby we had been wishing would just be “healthy” was going to be… something else. Especially since we had no history of a condition like this in either family. We didn’t know what spina bifida was, we didn’t know what this meant for our family. What we did know is that it didn’t matter, that we loved that little girl, and that our faith in God was strong. No matter what, we knew everything was going to be fine.

Eliora NICU 2

What is spina bifida? In a nutshell, spina bifida is a neural tube defect. Essentially, within the first month of gestation, our spinal cords are formed. The cord of those with SB did not finish forming and left a hole somewhere along the cord. Eliora’s was in her lumbar region, right above her bottom. This hole can be repaired in utero or within a day or two of being born.

Many other conditions and diagnoses fall under the SB umbrella – like hydrocephalus, chiari malformation, neurogenic bladder, etc. Eliora has many of these.

Please know that my goal is not to portray Eliora as a victim by explaining everything that is going on with her. She is not a victim, her quality of life is in NO WAY any less than anyone else’s, there’s no need to feel sorry for her or for us. But feel free to feel sad, it’s okay for your heart to hurt as mine does when I see all the obstacles my daughter has before her. However, her bright smile, her happy spirit, and her loving demeanor are a constant reminder that she doesn’t care – she’s a happy, well-loved baby girl with dreams, not obstacles, in front of her.

I am merely explaining the details, to explain what is currently going on with our sweet girl.

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Currently, Eliora has to be catheterized every 3-4 hours because she cannot urinate on her own. She takes two medications to help with this, to help prevent infection, and to keep her urine from refluxing back into her kidneys. She also has very low muscle tone. At almost 15 months, she is still learning to sit, cannot roll, and has what we call “spaghetti legs”.  But she is quite the snuggle-bug and doesn’t run away from kisses – and that is a definite win. This low muscle tone also affects her ability to pass bowel movements – something that we are currently addressing through diet. She attends two sessions of occupational therapy and two sessions of physical therapy per week. Shout out to In Harmony Pediatric Therapy – they’re spectacular.

She’s had multiple surgeries, but they have all been helpful and successful. Her hydrocephalus is under control, her strabismus is repaired (eye-crossing), her Dandy-Walker cyst is taken care of, and her back is looking good. We are very blessed to have had several uneventful months free of surgeries and complications, which can’t always be said of many people with spina bifida.

However, recently things have taken quite a turn. I always remind myself that things could be worse, but it doesn’t change the fact that things are different and we’re fighting for answers.

(This post has sprouted more words than I had originally intended, my apologies. I guess I just needed to write about this.)

A few months ago, after the start of the new year, we noticed that Eliora had some motor regression. There are things that she could do, like lift her head up while on her tummy, purposefully move her left side, bring her hand to her mouth, that she no longer could do on her own. She also started having some strange muscle tightness, something that comes and goes. We addressed this through therapy, focusing on those skills and aggressively working on them during her sessions. However, her therapists grew concerned, as did I, so we contacted Eliora’s neurosurgeon.

happy Eliora

This is a skill she can no longer do.

We wanted to make sure everything was okay in terms of her shunt, that no cysts had appeared on her spinal cord, that there was no tethering of her cord that could be causing these strange motor regressions.

A little over a month ago, she had a head scan done that confirmed everything was well with her shunt. Her neurosurgeon ordered a spinal MRI, but insurance was taking forever sending their approval. While waiting for approval, Eliora started losing weight. A lot of weight. She is a naturally small child, only weighing in at almost 17lbs at 14 months old, but she had dropped to 15 lbs in a short period of time.

The weight loss could not be explained since her eating habits had not changed (she was a great eater), so we scheduled a visit with her pediatrician and one with a GI doctor (who could only fit us in a few weeks out). Prior to seeing her pediatrician, and while still awaiting approval for the MRI, Eliora began very sporadic vomiting. By sporadic, I mean that she’d vomit one day, then not vomit again for three days only to vomit for two days in a row – very inconsistent. Suddenly her appetite started diminishing. She would turn her head to familiar foods, foods that we considered her favorites.

Then she decided to stop eating and drinking all together.

We saw her pediatrician on a Wednesday and she seemed very concerned about her weight loss and overall changes. Eliora was looking terrible – skin and bones, fragile. The pediatrician told us to wait to see GI and update the neurosurgeon.

The following day, Eliora missed her therapy sessions because she could not stop leaking poop… for almost an hour. The vomiting got worse and she continued to refuse food and drink. Around this time, her urine decreased in output and became very cloudy – signs of a UTI.

By Saturday, we couldn’t wait any longer, we couldn’t sit and watch Eliora get worse, so we took her to the Emergency Department at Children’s Healthcare of Atlanta. During this visit, it was determined that she indeed had a urinary tract infection and they recommended to wait to see GI at her upcoming appointment to treat what they felt was a “stomach bug” (in my opinion, that’s code for “I have no idea what is going on and none of the specialists are available”). They had given her some fluids intravenously while we were there and told us to bring her back if symptoms persisted for a few days.

During the next couple of days, she grazed on crackers, continued vomiting and dropping weight.

Monday rolls around, Asher has a terrible fall and we’re back at the CHOA ED. Fortunately, Asher was alright, just badly bruised and swollen. While getting Asher taken care of, the neurosurgeon’s nurse practitioner stops by the room to take a look at Eliora. She chats with the neurosurgeon and they decide to admit Eliora right at the moment to address some of the symptoms that could be linked to something neurological.

We were at the hospital for nearly two weeks. We saw neurosurgery, GI, urology, and neurology – all to no avail. The UTI we thought she had turned out to be a false positive, but she then developed one while admitted. All the doctors were pointing fingers at each other, then started pointing the finger at the UTI claiming that perhaps that’s what it was all along. She had the long-awaited MRI done, various GI exams, blood tests, urine tests, stool samples, and ultrasounds among other things.

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Because Eliora still would not eat or drink, they put her on an NG feeding tube – a tube that enters through her nose and is routed to her stomach. She currently grazes on crackers or random pieces of food, but does not eat well and has not had anything to drink for almost a month.

We now feed her formula through the tube and are working on getting her to eat more. She was discharged last week, but started up again with some vomiting and diarrhea this week. We have spoken to doctors and are still working hard to find answers.

A little over a month ago our baby girl was just fine. Now she still has motor regression, her muscle tone has decreased, and she relies on a feeding tube.

Could this all be related to spina bifida? We don’t know. It seems completely unrelated, but, again, we have no clue. But we believe in the power of prayer and we will continue to work hard, to advocate for our daughter, to find a cause and a solution.

Because of these recent happenings, we are adding speech therapy, we have several doctor’s appointments coming up, and have various other added expenses related to her feeding tube and motor development. We are extremely thankful that so many of you reached out to us, asking if there was a way you could help our family. We are horrible at asking for and accepting help, especially because we wish we could give something in return. Thanks to my husband BJ, we can make giving fun for everyone through the Raising for Rora fundraising raffle. Thanks to all those who believe in the cause and have donated amazing prizes. I’ll add links to all those who donated soon.

These are hard times for us, but Eliora is still a ray of sunshine through it all and we are truly blessed.

Beautiful Rora