My daughter’s wonderful Special Education teacher shared this powerful quote with me recently, and it has remained close to my heart.

She had printed these beautiful words for me along with a priceless photo of my daughter, Ryleigh, and her classmate.

They were holding hands and STANDING at a table together.

It was such a mighty photo of two mighty little girls.

Standing is indeed a big deal, and was once thought to be an impossible feat for Ryleigh.

In her seven years, my daughter has achieved the impossible, again and again.

She has accomplished impossible victories.

From her very first breath, she conquered, “impossible.”

Having been told that breathing on her own and surviving outside of the womb were unlikely, we recognized a mighty fighter before us, on the day she was born.

As a baby, we wondered if crawling was a goal far out of reach for her.

We watched her struggle to pull herself up onto all fours time and again.

At two years old, after a year of physical therapy sessions and diligent work on her part, it happened!

Out of nowhere, she took off across the floor in a mighty determined crawl!

When she wasn’t chewing or tolerating textures at three years old, we worried that we had missed the vital window of time to master that skill.

Feeding therapy, a brushing program, facial massage…you name it, we tried it; to no avail.

At six years old, we watched in sheer amazement as she ate birthday cake, green beans and many other non-pureed foods, for the first time.

At age four, we were told that statistics were not on our side.

Statistically, if a child of four years hasn’t learned to walk, the chances of success are highly unlikely.

At seven years old, we witnessed her take independent steps for the very first time, holding onto a gait trainer.

Shortly after that, she walked the hallway at school, holding onto only her teacher’s hands.

We watched statistics crumble before our tear-filled eyes, and we saw an astonishing sense of independence blossom!

There’s a song lyric that speaks volumes to me about achieving the impossible.

“I’ll climb the hill in my own way…just wait a while for the right day.”

Our girl has a fierce spirit and a courageous heart.

We know now that she’ll do things in her own way; in her own time.

Watching her reach milestones that we once ached for, fearing them to be impossible, has been a breathtakingly beautiful experience.

As she continues to attain the impossible, she proves more every day that she is MIGHTY.

This international day of Epilepsy awareness was started by a nine year old girl, Cassidy Megan, in 2008.

As a catalyst to encourage dialogue about the disorder, and to spread hope to others, this movement began and has vastly spread worldwide.

When my daughter, Ryleigh, was ten months old, I witnessed the first of many gut-wrenching seizures.

You NEVER forget the first time you experience the heartbreaking glimpse into the face of this disorder.

Life is forever changed.

Nothing is ever the same again, and the constant fear and worry of it happening again, at any moment, is always there nagging at you.

As many times as I’ve watched helplessly as she endures seizures, the experience never truly gets easier.

Over the past seven years, I’ve learned to act quickly, roll her to her side, watch her closely, time the event, and administer oxygen….all while time stands still.

I typically don’t fall apart anymore now until after it’s all over… until I’m holding her safely in my arms…until her body is still and she’s taking normal breaths again.

Parents shouldn’t have to live in fear of losing a child to Epilepsy.

Individuals with Epilepsy shouldn’t have to rely on harsh medications that often have detrimental side effects on their minds and bodies.

As parents fed up with the side effects of our daughter’s anti-epileptic medication, my husband and I have diligently and desperately sought other ways.

At a crossroads of being maxed out on her seizure medicine and the recommendation of adding a second one, we knew something had to change.

We were seeing horrible side effects, all the while, she was still having seizures.

Thus, we began the discussion of Cannabidiol oil (CBD) with our Neurologist for our daughter.

This discussion of treatment options needs to spread worldwide.

After one year of being on CBD oil, and having her seizure medication slowly weaned down to a much more tolerable dosage, our family has HOPE.

We’ve seen a “brain fog” lifted, cognition dramatically increased, anxiety melted away, and the frequency of her seizures lowered.

There is so much more research needed; there is so much work to be done.

Laws need to be changed so that every epileptic patient has access to safer, natural medication.

Lives need to be saved; quality of life needs to be improved.

Why does the world need Epilepsy Awareness?

So that the world can understand the effects that this menacing disorder has on individuals and their families.

Why do we wear purple on March 26, and urge others to do so as well?

To stand together in SUPPORT of those worldwide who are affected.

Join me on March 26 by wearing purple for PURPLE DAY. Let’s keep the discussion going about Epilepsy and continue to raise awareness together.

The hustle and bustle, the hordes of shoppers, and the thought of germs all around create a hermit out of me.

Sitting at my computer in my pajamas with a cup of coffee is definitely my preferred shopping experience.

When my daughter needed shoes to fit over her bulky, cumbersome AFO leg braces this December, I knew online shopping was out of the question.

They had to fit just right and they had to be perfect for helping her on her quest to taking steps.

My daughter is seven years old, and has a genetic disorder that among other things, causes low muscle tone. She has worn orthotic braces for years.

As she is now learning to take independent steps in a gait trainer, her braces with the sole made onto the bottom are beginning to cause a problem.

She’s never needed shoes before with them, but now she’s starting to rock back on her heels while walking, needing more traction.

I have taken for granted all these years how daunting the task of finding AFO compatible shoes would be!

On a Saturday evening, my family bravely headed into a large shoe store, child and braces in tow.

As we made our way to the kids’ shoes, her anxiety kicked in, and my husband swiftly carried our crying daughter back to the car.

The store was jam-packed, and as my own anxiety began to climb, a friendly sales associate asked if I needed help. I started into a long spiel of what I needed while showing her one of the braces.

As they surely don’t get a lot of requests like mine, I worried that I would be disappointed when she politely asked another associate to come over and help.

I explained my need again and was met with understanding and a dedicated attempt to find a solution.

One of them asked me what my daughter’s diagnosis was, and shared with me that she was studying medicine.

She nodded with sincere interest as I related to her the ins and outs of a Chromosome 1q43q44 deletion.

She listened intently and compassionately as I opened up about the conditions associated with her disorder.

Both of the sales associates pulled down countless shoe boxes, searched high and low for wide width shoes, and sat on the floor with me to try each and every one of them over the brace.

They thought of creative ideas, and they were more disappointed than I was when the only pair that precisely fit were black with blinding neon green colored stripes.

As the proper fit and style had been identified, the mission was now focused on finding the same fit in a pretty, girly color.

They eagerly offered to order a pair online for me, in my price range and color choice, to be shipped to my home. Hooray!

We all walked to the front of the store, and I was feeling quite accomplished as they searched their system to order exactly what we needed.

As I was preparing to pay and head out of the store, I thanked the young ladies and expressed my gratitude to them for going out of their way to assist me.

They both replied that it was no trouble and that they were just, “doing their job.”

The customer service that I received that day was beyond superb.

For a Special Needs Mom, experiences like that are greatly appreciated.  I am very thankful that I ventured out into that particular store on that particular Saturday in December.

Do they ever stick?  Honestly?  Nope.  With my 40th birthday looming, I recently had an epiphany and realized WHY I need to cling tightly to those resolutions.

I am a Special Needs Mother.  If I don’t strive to take great care of myself and to live a healthier life, I am doing a selfish injustice not only to myself, but to my children.

They will depend on me for many, many years to come and the fear of aging and turning 40 is quite frightening.

I have no desire to have the body of a fashion model or to fit into a size zero.  Those are both unreasonable and laughably unfeasible goals for me.

I have a much bigger picture that is driving me to sincerely want to do better.  Out on a brisk walk with my husband this week, I felt a bit winded as I took in the beautiful scenery and the fresh air around me.

In that moment, I thought of our children and reality hit me.  I NEED to be doing this, working on my cardiovascular health, every day.

The grim truth is that I need to do EVERYTHING in my power to remain here, for as close to forever, as I possibly can.

With every sip of soda that I drink, instead of water, I am starting to imagine the havoc likely being wreaked on my kidneys.

While my daughter with multiple physical and intellectual disabilities only has one kidney, I work diligently to maintain her kidney health.  What if she were to need one of mine someday?

That may seem a little far off to worry about now, but it certainly is on my mind and I find myself reaching for that bottle of water more easily today, rather than my habitual Coca-Cola.

While my daughter is only seven, and still weighs under 40 pounds, I can feel the strain on my back from lifting and transferring already.

I don’t strive to have a weight lifter’s bulky physique, but I feel the desperate need to strengthen my back.

I will carry that princess as long as my back holds out; and I need to ensure that it holds out indefinitely.

My son is thirteen and quite an intelligent young man.  He is also on the Autism Spectrum.

While he has a much higher level of independence than his little sister, I still shoulder great worry for him.

Wherever life may take him, I long to be here to love and support him.

Lately, with the New Year and 40 approaching, I feel compelled to do all that I can to stay on this Earth as long as possible.

The agonizing fear of ever leaving them behind is too much to bear.

They say that there is no time like the present.  Now is the time for change, as I feel 40 quickly sneaking up on me.  The invincibility I felt in my twenties and thirties has vanished.

I want to be here for a very long time, as a Mom, as a caregiver, and as a partner to my husband.  My family is my world.

This year, more than ever, I will work hard to hold on to my New Year’s Resolutions, and to finally convert them into a new way of living.

I would strive to be good so that my Christmas wishes would come true.

Now, being a mother myself, I appreciate how hard my parents worked to ensure that we always had a wonderful Christmas.

As a mother of children with special needs, I’ve grown to realize what is truly priceless and my wish list no longer includes frivolous material items.

The things I wish for every day can’t be delivered by a jolly, bearded man on a sleigh.

The gifts that I seek can’t be wrapped in pretty paper or adorned with shiny ribbon.   The presents that I long for won’t fit neatly under our Christmas tree.

They are not commodities or goodies at all, and they require more than a simple wish.

Some of them require loads of diligent work, and others, nothing short of a prayer and a miracle. If I could create a Christmas Wish List to be magically fulfilled, it would look something like this.

1.  I wish that my daughter’s Epilepsy could be cured and that her seizures would become a distant memory.

2.  I wish that the things we take for granted (walking, communicating, eating, etc.) didn’t have to be so challenging for her, and I wish that I could make accomplishing them easier for her.

3.  I wish that I could promise her that there will be no surgeries or scary medical procedures next year.

4.  I wish that I didn’t have to give her daily medications or have to worry about the damage they may cause her solitary kidney.

5.  I wish I could express to her how truly amazing she is and how deeply she is loved.

6.  I wish that my son could see how incredible he is and that Autism doesn’t define him.

7.  I wish that I could make all of his anxieties disappear, and give him a great sense of self-confidence.

8.  I wish that making friends came easily and that kids only showed kindness to one another.

9.  I wish for him to understand his magnificent talents and how intensely proud he makes me each day.

10.  I wish for a world filled with compassion; that everyone would love, help and respect each other, no matter our limitations or disabilities.

I am greatly blessed and thankful for my children; the true gifts in my life.

My family is all that I need gathered around the tree to have a Merry Christmas.

Still, the list of things that I most wish for will always remain, and I’ll always long for them, in case Santa is listening.

Yet it seems like the days have passed in the blink of an eye.

This time of year always takes me back to your beginning; to our journey’s beginning.

As a frightened, yet excited mother-to-be, I had waited years for you, little girl.

You were the anxiously awaited baby sister to complete our family.

You were the daughter we had wished for, and in the final weeks before your arrival, you were the daughter we had desperately prayed for.

Thinking back on your first precious cry; a sound that brought great relief and lifted an enormous weight from my chest, I knew that everything about you was amazing.

You fought just to be here, and that fighting spirit has grown stronger in you over the years.

Reminiscing on our first few years together, every birthday has been a joyous celebration of your life, and I continue to grow more grateful for you as the years come and go.

Family is always with us to celebrate your special day, and your teachers have even come to your birthday parties! You are deeply loved by everyone that knows you.

As wonderful and happy as those birthday moments have been, in the early years, birthdays also brought with them a twinge of sadness.

When you were three years old, you were given puzzles and push-along toys.

We watched you play with your trusty little piano (most favorite toy for six years running now!), not giving a second glance to the others.

At five years old, you still preferred infant toys; ones that crinkle and that are great for chewing.

You weren’t admiring a new baby doll, or riding a new bicycle.

There was a harsh sting of reality that accompanied those birthday gifts, and a bit of guilt in wishing you could run and play with the other children your age.

Seeing your sweet face light up with the treat of crumpling tissue paper from your gifts melted away my sadness.

In awe, I have watched you happily experience the little things in life that are so often taken for granted.

You savor life and delight in simple joys in ways that most people can’t comprehend.

There is great beauty and wonder in that.

Reflecting on the days since your last birthday, there is no sadness.  Over time, those little pangs of grief have been replaced by tremendous pride.

My heart leaps at all the obstacles you’ve overcome and all the new skills you’ve gained.

You’ve learned to walk independently in a gait trainer, bring a spoon to your mouth, sign for, “please” ,and so much more.

You no longer eat only the icing on your cake, but you eat the CAKE!

That is a huge milestone all in itself.

You achieve so much, despite the hurdles in your way.

You have a tenacity and a spark about you and it has been a breathtaking adventure watching you soar.

On this day, your seventh birthday, I celebrate the beautiful, bright, spunky and joyful light that you are.

You are truly a gift from above.

To quote the words of a classic song, “How wonderful life is while you’re in the world.”

I am thankful every moment for you.

HAPPY BIRTHDAY, RYLEIGH J

Epilepsy is a neurological disorder associated with abnormal electrical activity in the brain.

It can be caused by a host of factors: genetic anomalies, infections, structural changes in the brain, head injuries, strokes or tumors.

Chances are, you know someone with this disorder, as 1 in 26 people in the US will develop it at some point in their lifetime.

In our daughter’s case, even though we knew she was predisposed to it due to a genetic condition and a brain malformation, her diagnosis at 11 months old brought sorrow and anguish.

With November being Epilepsy Awareness Month, I wanted to share a glimpse into the world of loving someone with Epilepsy.

Seizures can strike at any time; they can strike anywhere.  We’ve witnessed our child go nearly two years without a seizure, thinking she had outgrown them, and then we’ve seen them return with a vengeance.

There are seizure triggers that we’re aware of (full moons, fever, lack of sleep, anxiety) and then there are seizures that occur with no rhyme or reason.

There is no statement more accurate than “You never know how long 30 seconds is until you witness someone you love having a seizure.”

With every type of seizure she endures, we are devastatingly frightened; petrified by her shallow breathing and dusky coloring.  I’ve seen every muscle in her little body convulse in a terrifying rhythm.

No matter how many episodes you watch your child endure, you never get used to it; it NEVER becomes easy.

Time stops.  My heart breaks.  I shake with fear.  I am angry. I pray for the life to come back into my child.

This roller coaster of emotions whirls inside me, all the while I have to remember to time the episode, administer her oxygen, keep her on her side and to remember to breathe myself.

I am lucky to have a husband and a son who keep a calm, level head during these times of distress; as we are thrust into Team Seizure mode.

You learn that you can never completely let your guard down when Epilepsy is part of your life.

You never know when you may have to call for an Ambulance and administer rescue meds that drastically slow down and potentially stop breathing.

You never know when a cluster of seizures may happen, sending you to the hospital.  You learn to function after sleepless nights and you attain the ability to sleep with one eye always open.

We find it challenging to leave our daughter in anyone else’s care (except her wonderful teachers and loving grandparents.)  Epilepsy limits our family’s freedom, and steals “normal” family experiences from us.

Despite the fear that we live with every day because our precious daughter has Epilepsy, we also live with HOPE.

We’ve seen much success in her seizure control with adding natural CBD oil to her treatment plan.

So many of the prescription anti-epileptic medications can cause severe personality changes, rage, lethargy, kidney damage, and more.

We have a Neurologist that is extremely supportive; she is on board with our displeasure of pumping multiple medications into our child that have many known and horrible side effects.

Together, we work as a team to treat her seizures as effectively as possible, while striving to give her the best quality of life.  Epilepsy isn’t a topic that most people are comfortable talking about.

As it’s a part of our life, and greatly affects the life of our daughter, we will continue to talk about it and hopefully impart knowledge and awareness along the way.

As a special needs parent, I have experienced the goodness of strangers in ways that have helped strengthen my faith in humanity.

You never truly know what a person is struggling with or what is going on in their life.

No matter how small a gesture may be, it can go a long way and affect a person’s day in very big ways.

Once after my daughter’s physical therapy session, we pulled into a fast food restaurant for a treat.  My twelve year old son was with us and he was eager to enjoy his favorite ice cream and chicken nuggets.

As we got out of the car, I popped the trunk to get my daughter’s wheelchair out; he opened her car door and then immediately came to my aid.

As I lugged the bulky, heavy seat and frame out of the car, he helped me put the chair together.  After I lifted her out of the car seat and placed her in her chair, he helped me get her safely buckled in.

As he always does, he ran ahead of me and opened the door to the restaurant and held it open for me to get her inside.

After I ordered our snacks I heard a voice beside me say, “This is on me.”

I was surprised and confused when the lady in line beside me looked at me with a bright smile on her face.

As this complete stranger explained to how she had watched my son being so helpful to me and to his little sister in the parking lot, tears ran down her cheeks, and then mine.

She went on to tell my son that she was super proud of him for being such a great big brother, and he thanked her with a very polite handshake.

I asked her if I could repay her for her kindness and she told me that I already had.  She would only accept our hugs, smiles and handshakes.

She proceeded to tell me that she had received blessings in her life from others, and it was her pleasure to do something for us.

Since that day, her kindness has remained with me.

There have been moments since where it’s made my heart happy to pay for another person’s toll at the toll booth or purchase the coffee of a stranger behind me in line at Starbucks.

Even offering a kind word or a smile can make such an impact.

It may not be much, but can you imagine what our world would be like if we ALL extended some courtesy to strangers, from time to time?

I am grateful to the lady we met in the restaurant that day, for acknowledging my son’s manners and helpfulness, for acknowledging our struggle, and for showing us how sharing a bit of good will can transform someone’s day, for the better.

This is the time of year that I once lived for.

Being outside for hours, impromptu drives to the beach, trips to the park and leisurely picnics were once all integral parts of this carefree period.

Now, as I experience the summer months as a parent of children with special needs, I am seriously wishing for AUTUMN!

While I am loving the time at home with my children, without any school related responsibilities, I see the need for routine in our lives.

We thrive when there is some sort of schedule in place.

Medications are still due at certain times; being on summer vacation doesn’t change that.

The alarm is always set for 5:00 am, so there is no sleeping in.

In addition to strict medication schedules, feeding and sleeping routines need to remain somewhat consistent.

When Autism and Epilepsy are a part of daily life, consistency is a MUST!

This, among other things, can make summer outings a challenge.

If we visit a waterpark or pool, where will we privately change our daughter’s diaper?

In the hot car?

Definitely not on a baby changing station – at six years old, she is way too big for those.

Certainly not on a wet, disgusting floor.

Will there be food that she can eat?

While she is learning to chew, textures are still an obstacle.

Can we find something suitable for her, or do we pack pudding, applesauce and yogurt just in case?

Another concern we must take into consideration is the temperature.

Living in the hot and humid southern part of the U.S., summer temperatures can be stifling.

For a little one that has trouble regulating her body temperature, this can not only be uncomfortable, but also dangerous.

Seizures can sneak up out of the blue with extreme body temperature changes.

Did we remember to pack the rescue meds?

Should we have brought along her oxygen tank, just in case?

Instead of floating down a lazy river at ease or splashing in the pool without a care in the world, my mind remains filled with these worries.

If we are out for an extended time and need to go out to a restaurant, is it going to be overly noisy?

Will our daughter become overstimulated and not be able to tolerate the crowd?

Which one of us will stroll her around outside if she becomes miserable from the noise – and will there be a cool, shady place to get her to calm down?

We are not a family that is opposed to having fun, despite our extra worries and concerns of summer.

We are just the opposite – we make our own fun wherever we are.

We have had many adventures; we just have to be conscious of our children’s needs and accommodate accordingly.

Evening trips out for ice cream and enjoying water activities early in the morning are examples of how we manage that.

We may not be able to impulsively pick up and go, but with careful planning, we make fun happen.

Mornings on the sofa cuddling with my daughter and late nights watching old movies with my son are definitely the highlights of our summer break.

We take advantage of things we don’t get to do so much, during the school year.

We’re grateful for air conditioning and extra time spent just being together.

To me, summer is a bit overrated.

Bring on the pumpkins, the cool air and brisk walks at the park in Autumn.