Purple Day and the Road to Epilepsy Awareness

Every year, March 26th is designated as Purple Day, a worldwide effort to raise awareness for Epilepsy.

I’m thankful that this cause exists, as it’s a day dedicated to sharing information and standing in solidarity with all individuals living with this diagnosis.

However, wearing purple and posting on social media for one day, out of the entire year, is just a small step in the right direction.

To continue making our communities aware, and to promote further research and treatment options, our little steps must become big strides. To create a difference in the lives of our loved ones living with this monster of a disorder, and their caregivers, we must do more to pave the road to awareness.

I never knew how to respond to a seizure until the night that one happened right in front of my eyes.In a desperate panic, I felt helpless as a tonic-clonic seizure suddenly took over my tiny, 10-month-old baby.

It was out of the blue, as they often are.

No rhyme or reason. Every muscle in her little body contracted violently as she lost consciousness. Her breathing seemed nonexistent.

It was completely devastating, and it changed me forever. The trauma and heartbreak that lasted for only a few minutes was burned into my brain for a lifetime.

They never get easier. No matter how many times you watch your child endure them, seizures are terrifying and gut-wrenching to witness.

As caregivers, we train those in our circles on the protocol to follow if a seizure occurs in our absence. It’s uncomfortable to talk about, but it’s necessary.

It could be lifesaving.

In accordance with the quest to spread awareness, and to teach others how we can walk this road together, these are first aid safety tips provided by the Epilepsy Foundation. Knowledge is power, and it would benefit ALL community members to know what to do if they encounter someone in need of assistance.

  • STAY with the person until they are awake and alert (remain calm, time the seizure.)
  • Keep the person SAFE (move them away from harm.)
  • Turn the person on their SIDE if they are not awake or aware (put something soft under their head, keep the airway clear and loosen tight clothing around their neck.)
  • NEVER put anything in their mouth or restrain them.

Call 911 if:

  • The seizure lasts longer than 5 minutes
  • The person doesn’t return to their usual status
  • The person is pregnant, injured or sick
  • Repeated seizures or breathing difficulties occur
  • Seizure occurs in water

I never hesitate to call for emergency back-up when I feel that it’s needed.

After 13 years of parenting a child with an Epilepsy diagnosis, and living with its looming, stalker-like presence in our home, I wish a cure could ultimately be found. Until then, I will give my all to help her battle this beast.

Parents make the BEST advocates. You’ll find us calling and writing to our legislators.

We share our stories and plead with them to put laws into effect to help our children. I’ve watched incredible parents fight courageously, pushing for bills to legalize medical cannabis and to mandate seizure first aid training in schools.

We have open discussions with doctors on medication side-effects. We strive to educate others so that our kids will be safe, receive better treatment options and maintain the very best quality of life.

On this road to Epilepsy awareness, we can help by recognizing Purple Day and sharing information that we learn with others. We can support families that live this life. Together, we can team up against seizures and help clear the path for those trailing this road behind us.

To learn more, visit www.epilepsy.com and www.purpleday.org

It Must Be Nice

One task that comes with being the parent of a child with complex medical needs and disabilities is making countless, redundant phone calls. We spend A LOT of time scheduling appointments over the phone, being placed on hold for ludicrous amounts of time, disputing insurance claims, and tirelessly advocating for services and supports that our children need. On one of these recent, never-ending phone calls, the representative made small talk with me while she waited for her computer screen to load. To fill the awkward silence, she asked “What do you do for a living?” When I answered, “I’m a stay-at-home mom”, her short response caught me off guard.

“Hmph, it must be nice.”

I couldn’t see the representative’s expression, but I could clearly imagine it as a smirk. Maybe it was even accompanied by a sarcastic eye roll. In response, after I paused briefly to process her comment, I replied, “Yeah, it’s really hard work, but it IS nice.”

After we wrapped up the conversation and my claim had finally been resolved, I still found myself stuck on the remark about my occupation. Thinking of how she probably viewed my day-to-day life, (likely picturing me eating bon-bons in my pajamas), it made me realize that despite all the “hard”, it truly is the very best job I could ever ask for.

My back aches from lifting and transferring, but I get the sweetest kisses from my precious 13-year-old daughter.

My world is filled with loving cuddles, bedtime stories and holding hands as I sing her favorite song, “Row, Row, Row your Boat.”

My weeks are packed with therapies, medical appointments, medication management and many miles traveled. They are also overflowing with magic, and the privilege of having a front row seat to all the progress that she’s making.

I am on standby every day in case she’s sick or doesn’t get adequate sleep. On school days, I stick close to home in case I need to get to her school quickly in the event of a medical emergency. It gives me peace of mind that I never have to stress over missing excessive time from work. No boss would tolerate the absences I’d quickly rack up.

My clothes and shoes are worn, less than brand new. Ever since I stopped working, I always feel a little twinge of guilt when I spend money on myself. My husband is completely supportive, hard-working, and always points out that my needs matter too. He sacrifices and gives his all to his family. We’re a team and we remind each other that neither of us can pour from an empty cup.

I’m perpetually tired and usually rely on ridiculous amounts of coffee.

But with cup in hand, I’m lucky to have the ability to see my 19-year-old son gaining independence. I’ve had the gift of proudly sitting ringside as he finished high school virtually, now successfully taking online college courses.

ALL parents, no matter their career or occupational status, have an extremely tough job. As I reflect on what my work entails, I am so very thankful. The long days and sleepless nights are worth it all. Despite the many struggles we’ve faced, the time I’m afforded to be with my children is priceless. This life may not be understood by those outside of it, but it really IS nice.

When it Clicks

For some of us the “little things” don’t always come easy.

In fact, for many of us, those “little things” are truly the incredible, BIG things.

Parents of children with disabilities wait…

And wait…

Sometimes, the achievements we wait for may not ever happen at all. It is an ache that dulls some over time, as we grow into acceptance. We learn to meet our children right where they are.

They are enough and they are exactly who they are meant to be.

However, that doesn’t mean that we EVER lose hope. We never give up.

We spend years taking our children to therapies, learning various techniques from professionals, and applying them at home. Our brains are like sponges; they absorb an abundance of information that aids us in teaching our children to become as independent as possible.

We dedicate hours to researching intervention methods on communication, mobility, behaviors, and sensory defensiveness. We wonder every single day (and worry through sleepless nights), “Am I doing enough?”

Sometimes, we grow weary.

When something just doesn’t “click”, no matter how many different, desperate attempts we’ve tried, the feeling of defeat can be inescapable.

I recently stopped focusing on self-feeding skills with my daughter. I had placed that on the back burner, as our progress had stalled. I felt that I was pushing too hard, and it was stressful for her, so I stepped back and gave us both a break.

Then one day, out of the blue, something magical happened.

While eating a packet of chocolate Teddy Grahams, my husband caught our girl’s attention. As her bright eyes widened, she watched with great intent as he slowly ate one of the intriguing, tiny cookies. He placed one in the palm of his extended hand and asked her if she’d like one. We watched in sheer amazement as she picked it up and brought it towards her lips! At 13 years old, we still had not experienced the victory of her eating finger foods. We’ve done countless feeding therapies, and tried numerous dissolvable snacks over the years, to little avail.

But on this day, she saw a chocolate bear, picked it up, and independently brought it to her mouth. She watched and imitated this major life skill!

She didn’t quite eat it, but she held it tightly to her pursed lips, to experience a taste. She hasn’t yet mastered chewing, so we were on high alert to quickly grab it if it made its way into her mouth. She held onto it, without throwing it down in protest! Before our completely bewildered eyes, as we held our breath, we witnessed her conquering an amazing feat. She showed awareness of this early developmental concept. This realization, along with a huge fine motor task, had been absent for so long.

It finally CLICKED!

She was so enthralled, she even reached into the packet several times to feel them, pulling the teeny snacks out and smelling their rich, chocolate aroma!

Since that day, I’ve been excited as we’ve resumed our feeding practice. My fire was reignited, and I’m driven to help her continue this almighty quest. Her Daddy has earned the title of “Feeding Whisperer”, as he’s taught her to hold and taste the salt from the ends of pretzel sticks. One of her favorite new activities is picking up small, dissolvable baby puff snacks and holding them to her lips. I just know that soon, she’s going to eat one!

When the breakthrough, aha moments finally happen, suddenly all the waiting is worth it. A success that may seem miniscule to most is significant in our world. We don’t take the victory lightly, or ever for granted. When it clicks, great pride and gratitude wash over us and we know every second that we pour into these battles is worth it.

Returning to Routines

Winter Break passed by in a hurry.

While three whole weeks of later starts and more relaxed schedules brought much needed relief, it was fleeting. I relished having my morning coffee by the illuminating glow of the Christmas tree. I loved being free from the stress that comes with rushing out the door into the cold, arms loaded down, and racing against the clock to make it ANYWHERE on time.

We cherished extended stays in our pajamas. On days with no outpatient therapies scheduled, we enjoyed the coziness of home, without the constant need to go, go, go. My kids savored sleeping in and having no school. Being at home, in our bubble, we finally managed to stay healthy this time; we thankfully dodged all holiday-wrecking illnesses.

It couldn’t last forever. As much as we all needed rest and time together, now, we REALLY need to return to our routines. We need to give the YouTube videos, that have played on a never-ending loop, a break.

We need consistency in our world to thrive.

In our world of Autism, Epilepsy, complex disabilities, and many additional needs, it’s hard not to worry when the first day back to reality hits.

I fret over the potential of my daughter being exposed to sickness at school. We’ve steered clear of fevers and seizures. I push onward with our regimen of immune system boosting vitamins. I fill her bookbag with hand sanitizing wipes and say a prayer.

I tense up at the thought of her struggling to transition back into her daily agenda. I get her bedtime back on track and hope for abundant sleep. I have explained upcoming changes to my nonverbal girl with visual schedules. I cross my fingers that her usual, sunny disposition will continue as we return to our “normal” life.

I bite my nails as my son resumes his online college courses. We’ve created a calendar for the whole semester and talked through anxiety provoking scenarios. Hopefully, he’ll start out strong and find great success again in this new year.

I miss the holiday season, but at the same time, I’m so glad that it’s over, too.

Time to start fresh. Time to get back to work on our goals.

We’ve got a brand-new year before us to be tackled. As we all return to our routines, may it be our best one yet.

Take Care of You, Mama

“You make sure that your daughter drinks plenty of water.” “You need to do the same for yourself, too.”

Wise words from my doctor at my latest annual wellness exam. She knows that I am the mother of a child with multiple disabilities and special healthcare needs. With my daughter having a solitary kidney, her hydration is at the top of my daily priority list. As for myself, my daily water intake typically consists of the ounces used to brew my many cups of coffee.

“Let’s talk about ways we can manage your stress and help you sleep better.”

“You need to make some time for yourself.” “Walks in the sunshine could be helpful.”

“It’s time to schedule a routine colonoscopy and mammogram.”

I already knew all these things. Sitting there with my kind and thorough physician, I was reminded of their importance with care and concern. We talked about all the EXTRA things that come along with my version of motherhood.

In addition to the joy and indescribable love that fill my days, my story also involves repetitive lifting, life-long caregiving, and endless advocating. It is my purpose and I put my entire heart and soul into it.

I’m in it for the long haul. I HAVE TO BE.

At that visit, I felt rejuvenated and remembered how vital it is that I make my own health and well-being a priority. To take the very best care of my family, I can’t afford to put off any of the things that we discussed.

I can’t allow myself to get completely run down, have worsening back injuries or feel completely burned out. How can I be there to meet my family’s needs if I don’t meet the needs of my own mind and body?

So, this morning, I scheduled all my follow up appointments and preventative exams.

I dread them all and I’m not looking forward to any of it.

But, if my daughter must withstand never-ending ultrasounds, swallow tests, x-rays, blood draws and more, then I can’t let her down. I won’t let her, our family, or myself down. I will make the time for each of these imperative tasks, and I’ll stop procrastinating.

Today, as I fill my daughter’s cup and check off her ounces of water intake, I also fill my own. I’ll have an apple and I’ll take a walk around the block, feeling the sunshine on my face and the breeze in my hair. I’ll listen to my well-meaning, fitness enthusiast husband when he shares back-saving lifting tips or encourages me to step away for a break.

This life isn’t easy, but it’s mine and I am so very grateful for every second of it. Making time for ourselves isn’t at all selfish or an inconvenience. Mamas and caregivers pour our love into our precious ones as we provide for their care. Sometimes, we just need gentle nudges to do the same for us, too.

When You Include Me

When you include me, I’m not just a kid in that class at the end of the hall.

I’m not an outlier, on the fringe of my school’s community.

When you include me, I’m an equal and valuable member of it.

When you include me, I’m not sitting alone on the sidelines, watching the other children running and playing in PE class.

I’m right there with my classmates, participating in an adaptive way. I’m involved with my peers; I’m not left to idly observe them.

When you include me, you see beyond my disabilities. You focus on my abilities.

You don’t fixate on what I can’t do; you celebrate all the things that I CAN do. You raise me up and help me to be as independent as possible. You see past all labels and limitations.

When you include me, you make a place for me.

You make accommodations for me. Not because you’re legally required to, but because you genuinely see the value in my being a part of your team. You see my worth.

When you include me, you give me opportunities. Barriers and blocked access are removed. You make sure that my environment is comfortable and safe. You ensure that I am given fair means to learn and play.

When you include me, you give me a hand when I need it. You support me with my communication device, and you want to hear my opinions. You help me find my voice and express myself, rather than having me sit by in silence. When you include me, you’re excited about my progress, no matter how slow the pace.

You and others around me give encouragement to help me succeed.

When you include me, you think outside the box when it comes to connecting with me. If I don’t respond to one strategy or method, you try other ways. You show me flexibility and understanding and give me time to process things at my speed.

When you include me, you show me kindness. You don’t stare at me or fear me. You ask questions and make a true effort to get to know me. You extend your friendship to me.

When you include me, you enrich my life, and you enrich the lives of those around me.

When you include me, I feel it. My Mom does too, and she is ever so grateful. Her heart is full when I’m included, and she’s so thankful that I was given a chance. She hopes you realize the great depth of her appreciation and that you’ll see how truly awesome I am!

Siblings and Sacrifices

Siblings of children with complex medical needs and disabilities are an incredible kind.

They are resilient.

They love unconditionally.

They protect.

They educate.

They encourage.

As I’ve witnessed over the years in my own home, they often make many sacrifices too. They have a graceful way of making them effortlessly and without resentment.

My son is 19 years old and for many reasons, wise beyond his years. He has watched scary, life-threatening medical emergencies unfold before him. He has been trained to respond and he has learned to do so with a steadfast calmness. He has been forced to grow up rather quickly over the past 12 years. He’s seen up-close how very unfair life can be.

Through all of this, he is the most empathetic and caring big brother that his little sister could ever ask for.

Life teaches us lessons in harsh ways sometimes.

It can break a mother’s heart, while making it burst with pride at the very same time.

When he was younger, my son was dragged along to endless medical appointments and therapy sessions. There was never a complaint. There was rarely a question. It was always an adventure for him; he’d charm the therapists and be happily contented with chicken nuggets and ice cream afterwards. Countless hours spent sitting quietly and playing video games in waiting rooms were the norm for him. He didn’t know any other way.

Family vacations have been cut short. Beach trips and ventures that were meant to include our family of four have often morphed into divide-and-conquer missions; teams of two.

We’ve had to postpone or cancel plans and change directions at the very last minute. Time and time again. I can’t recall a time when he met any of those situations with bitterness or animosity. Even when feeling justifiably disappointed, he’s shown an innate ability to rise to the occasion with compassion and understanding.

I often hear: “I’m fine, feed her first, Mom.” “It’s okay, we can go another time, Mom.”  “Don’t worry about me, Mom.” “Call me when the doctor comes in and reads the tests, Mom.”

Life can feel like a balancing act at times.

Especially when he was younger, the guilt of letting down my first born often felt crushing to me. It always left me feeling torn, and as if I had failed. I have always tried my best to make sure that he knows how deeply loved and treasured he is. That he is genuinely seen and heard. He’s all grown up now. I often find myself standing in awe of the altruistic, unwavering selflessness he shows in many aspects of his life.

I can’t take any of the credit for it.

It’s his own nature and the way real world experiences have shaped him. It hasn’t always been easy for him, but he has beautifully embraced this life and he makes me so very proud. He’s made many sacrifices along the way. Although he doesn’t even realize it, he’s so much more than a brother. To the little girl who lights up when he walks into the room, he is the BEST big brother. In her eyes, he hung the moon.

Seizures and Setbacks

No matter how many times I witness a seizure, I am traumatized and terrified. EVERY SINGLE TIME. When someone you love lives with this disorder, there is an ever-present heaviness.

And it’s so much more than just the actual seizures.

Parenting a child with complex special needs and an Epilepsy diagnosis means a heart filled with unrelenting worry.

It means the presence of a constant, nagging fear…knowing that seizures, even when hidden away for a long stretch of time, still lurk quietly in the shadows.

It’s learning to live in a state of chronic, traumatic stress.

It’s managing to keep every aspect of life as meticulously regimented and routine as possible.

It means tapping into a strength for your child that you never thought you’d possess. It’s never giving up and never backing down.

It’s being afraid to drive away from my daughter’s school, with a paralyzing anxiety of being out of her reach.

It’s feeling my heart drop into my stomach when her school calls in the middle of the day. Then, it’s driving at ridiculous speeds to get to her side, and the need to comfort her. The powerful, unstoppable need to hold her and tell her she’s going to be ok.

It’s not knowing when a perfectly normal day will turn into an ambulance ride to the ER. Not knowing when her happiness will be unexpectedly thwarted, in an instant.

It’s the heartbreak of watching seizure freedom being snatched away from her, as she again suffers the aftermath that the frightening event leaves in its wake.

It’s the recovery period that keeps her heartrate high and her breathing shallow.

It’s the medication increases that bring agitation and days of recovery from drowsiness.

After the dust settles and normalcy has finally been restored…it’s the setbacks.

My daughter has regressed in areas and lost valuable skills after having seizures. Each time, I feel defeated and heartbroken; grieving the abilities that disappear before my eyes. Skills that she worked so hard to attain seem to vanish, bringing us back to square one.

I’ve watched chewing fade away. I’ve witnessed severe anxiety return in social situations and when outdoors. Months and months of OT aimed at promoting self-calming skills have been washed away in minutes. Weeks of potty training and its long-awaited success have come to an immediate, crashing halt.

It’s easy to give into the heartache and frustration these setbacks bring. It’s easy to be sad and to get bogged down in things that are taken away. When this happens, I remind myself who my daughter is and all that she is capable of.

She is courageous in every facet of her life. She consistently pushes through. She overcomes. She gives me the determination to try again. Her tenacity reminds me that she has mastered impossible feats before.

With love and lots of time, she can master them again.

Our most recent setback was with potty training. That familiar fear crept in as all progress seemed lost. Had the skillset and understanding that she worked so hard to attain been erased? Potty training has been a monumental win for her and a life-changer for her health. It once seemed an impossible feat; it had finally become a reality. Thankfully, and to my great surprise, this newfound life skill and ability shortly returned.

Seizures did not win. Setbacks did not win.

We can never let them win.

We’ll fight back against them, time and again. We’ll keep a watchful eye out for their unwelcome return and try with all our might to keep them at bay. We’ll do everything in our power to always rise above the seizures and setbacks.

A More Accessible World

A More Accessible World

I never realized how inaccessible our world truly was until I became a mom.

I was CLUELESS. Blissfully unaware of the many struggles that individuals with disabilities face, I ignorantly took much for granted. I had no idea of the frustrations and injustices that people all around me were up against daily. Sadly, I just didn’t see it…until it was placed right in front of me.

Exclusion. “The act of not allowing someone or something to take part in an activity or to enter a place” is all too common in our society. When we exclude, whether intentionally or not, we are letting valuable members of our communities down. In leaving them out, we all miss out.

It’s unfair and we can do better. We must do better. This notion that was once a distant idea to me is now in the forefront of my mind. I see it every day. As a mom, and an advocate for my children, I’m driven to push for change; I am compelled to be loud about making ours a more accessible world.

When we deny individuals the ability to safely exit a vehicle or when we fail to provide access to bathrooms designed to accommodate the needs of ALL people, we are actively excluding. These are just two instances that I’ve encountered this week, with my daughter, who has multiple disabilities.

When buildings lack the means for wheelchair users to enter, and recreational activities are not adapted to welcome children with autism, we are not being inclusive.

Physical and social barriers standing in the way must be torn down.

Schools and other community establishments have come a long way; but not quite far enough.

Thankfully, as more people are raising their voices, the world is starting to listen.

Retail stores and movie theatres are offering limited “sensory friendly” hours and showtimes.

Dance classes and theatre programs for children of all abilities are being skillfully created.

Inclusive playgrounds and parks are being built in some areas to provide equal opportunities for ALL to play.

Polling places have implemented practices to eliminate many hurdles of the voting process.

All these things should be commonplace, not rare exceptions.

I am grateful to see conscious efforts being made to include, but there are still miles to go. Adaptive equipment for children with motor, mobility, communication, hearing, and vision challenges exists. However, parents often must battle intensively with schools and insurance companies to acquire it. To make room for all people, we have to provide proper accommodations for them.

Parents and caregivers make the best advocates. We’ve learned to stand up to school administrators with firmness and decorum. We’ve become informed and we demand more from our lawmakers. We see first-hand, and close-up how badly things need to change. We can be the catalysts; we can use our voices to speak up for others.

As communities, if we all work a little harder, dig a little deeper, and view the world through eyes of compassion, kindness and equality, more progress can be made. Walls will continue to come down and the world can be more accessible to all the ones we love.