My little girl has given me the power to be an optimist.

Most days I’m able to tackle the challenging and hectic schedule that is our life and find many beautiful moments woven in.

With her happy smile, she helps me see past all things difficult and reminds me how much there is to be thankful for.

However, there is an unescapable sadness that still manages to creep up on me from time to time, when I least expect it.

The sadness and grief are cyclical; periodically recurring, no matter how positive our current situation may be.

Things may be going perfectly fine and life can be magnificent, until one little catalyst can turn a good day upside down.

At a recent visit to a local park with my family, my son played cheerfully while I sat my daughter in the sand to feel the texture.

As this didn’t suit her, she tried out the accessible swing and then the slide, with my help.

None of these activities met her standards of a good time!

Sitting her back in her wheelchair, she was finally contented.

She was back in her comfort zone.

Then, out of nowhere, a pang of grief snuck up on me with one simple question from a little girl.

“Can she get out of that chair and come play with me?”

And there it was.

The familiar lump that quickly forms in my throat when I want to cry, but I desperately try to choke it back.

Like a brick to the forehead, the sadness hit me, and it hit me hard.

A simple response of, “I’m sorry; she can’t,” was all I was able to manage.

Her mother was beside me and quickly told her to run along and play.

The day was bright, and there were kids laughing, running and digging in the sand.

There were squeals of cheer all around us as kids were playing and enjoying the freedom of being at the park.

All but my daughter.

She was only a spectator, merely observing the sights and sounds around her.

A sweet child wanting to incorporate her in the fun normally would have delighted me; someone wanting to include her.

This particular day at the park, it didn’t.

I felt the opposite of delighted…I felt completely dismayed.

While I truly appreciated her wanting to involve my daughter in play, all I could do was feel the heavy inequity – the unfairness of the situation.

The fact that she can’t get out of her chair and join in hurt me to my core.

She deserves to be able to run and jump and climb the steps to the slide.

She deserves to be part of those precious childhood moments other children get to experience.

Instead of enjoying this sunny afternoon at the park, instead of happily watching my son on the monkey bars having the time of his life, all I wanted to do was dig myself a giant hole in the sand.

Moments like this will always be a part of our life.

I am certain that they will come and that they will pass.

As waves crashing onto a seashore, the sadness will roll in from time to time.

There is no way around it.

On a positive note, the waves recede a lot faster now than they did in our journey’s beginning.

The sneaky sadness that found me on that day at the park diminished as we left to go have ice cream.

She loves ice cream and I love seeing the joy on her face that it brings her.

In beautiful moments like that, I again find gratitude.

I appreciate this beautiful daughter of mine and all the wonderful things she is.

SHE is reason enough to dig myself back out of the sand.

Your heart changes and you discover gratitude for things once unappreciated.

While this new life certainly brings immeasurable joys and intense thankfulness; it can also bring isolation and solitude.

Time for yourself.

That was something you once knew, but scarcely stumble upon anymore.

Visits to doctors, specialists and therapists now fill your days.

As for myself, sometimes I feel like a recluse.

Things that I once had in common with people from my old world have become lost.

That is not a complaint, just a fact of the way things are now.

However, since venturing into this vast new world, I have been lucky to find others along the way that are walking a similar path to the one that I travel.

When that happens, the feeling of isolation begins to melt away.

At a recent therapy session for my son, while making small talk with another mom, a sweet moment of EUREKA occurred.

Listening to her talk about the adversity her family had faced on their journey and also the bliss and hopefulness that has come along with it, we found striking similarities in our lives.

Although no two situations are identical, there was such a common ground between us.

We shared experiences and spoke of the immense love we have for our children.

We nodded while listening to each other and acknowledged familiarity.

We talked of seizures, meltdowns, homeschooling, feeding difficulties and medications.

We discussed IEPs, MRIs, AFOs, surgeries, syndromes and advocacy.

We were speaking a language that special needs parents become fluent in.

I would compare experiences like this to being alone in a foreign country and crossing paths with someone who fully understands your native tongue.

Meeting and having a conversation with someone who absolutely “gets it.”

This mom and I now gladly greet each other each week and pick up our conversation where we left off.

Every week I genuinely look forward to going to this particular therapy session.

It is one hour out of the week where I enjoy sitting outside, watching my son engaged in equestrian therapy.

It is one hour where I sit and talk face to face with another mom who works tirelessly and would do anything for her children.

Another mom who fights for them with her every breath.

In this hour, I feel less detached from the world and much more included.

This time is always so very therapeutic.

Not only for my son, but also for me.

With my husband and my daughter, it’s clear to see the heart-holding is mutual.

My daughter is a spunky, happy, loving four year old.

Although she is small, she has a joyful personality that is larger than life.

She also happens to have very special needs.

There are mountainous hurdles that she must overcome every day.

Her Daddy is a Triathlete that pushes his body to the limits…she has his same dauntlessness and tenacity.

She can be sitting perfectly still and content playing her little piano, until her Daddy walks into the room.

Her happiness then can’t be contained!

“Da-Da” is the only word she speaks, and she says it with excitement, very loudly and deliberately, when he’s in view.

When he is sitting on the floor with her, he is her jungle gym.

I watch them closely…she reaches up and touches his face.

They look at each other, having a whole conversation without uttering a word.

He calls her a silly name and she erupts in belly-shaking, breathtaking laughter.

The interaction between them is beautiful and I never grow tired of watching it.

It is an ongoing joke (truth) in our house…she loves her Daddy best!

I will try my hardest to earn a smile or a giggle; he elicits them with ease, effortlessly!

All he has to do is look at her or call her name and she goes all starry-eyed.

It is obvious how tightly they hold each other’s hearts.

There are often times that my heart aches for him and for the typical father/daughter moments that disability will take away from them.

The traditional father/daughter dance, planning for college, buying her first car and walking her down the aisle are all milestones of life that are heartbreakingly unfeasible.

Those topics are ones we don’t talk about often.

They are a part of reality that we can’t dwell on.

They’re acknowledged and pushed out of our minds for now.

Our thoughts never tarry there.

Seeing this duo together, I witness wonderful moments unfolding before me.

And I look forward to all those ahead that they will experience together…moments that fathers of typical daughters could truly never understand or fully appreciate.

She will hold his hand a lot longer…he will sing her lullabies and rock her to sleep longer…she will reach her arms up to him for snuggles and cuddles longer….he will make her laugh until her face is bright red, with a single look, longer.

He will remain her undeniable hero and her fierce protector for much longer.

What society deems as imperfection, makes her all the more perfect to her Daddy.

Theirs is truly a love like no other.

Every day I am lucky to watch her with the one that makes her laugh.

Normally, I walk into her classroom each day, chat with her teachers for a moment, then we head on our way.

Today was an exception, and I have felt completely indebted since we left.

Ryleigh’s classroom is designated the “PMD” class.  This acronym sounds much more pleasant than the actual name: Profoundly Mentally Disabled.

She transferred to this class recently from a Special Needs Preschool class.

In the Preschool class, she was the least “abled” of any student and really wasn’t on track with any of her peers.

They could run, jump and do things that I could only imagine someday seeing her achieve.

But, the liveliness of the children gave me hope for her.

When she transferred schools, the label of PMD was seriously hard for me to swallow.

How despairing and hopeless it made me feel.  I wanted to cry on the first day of her transition.

Until I opened my heart and my mind and saw this amazing class in action.

Her new classmates were beyond charming!

The room was filled with an array of adaptive equipment that would accommodate her needs.

There was a bounty of special toys that would challenge her to meet new goals.   In a short time, I had renamed it the Positively Motivated and Determined class!

Inclusion is a key part of her day in the new class.

She spends time with a typical Kindergarten class.

Her teachers (who are marvelous, by the way!) have been sharing with me how much the kindergarteners adore Ryleigh and how she loves interacting with them.

From the start, this sounded like a fantastic concept to me!

They were teaching empathy and acceptance to kindergarten students, while making my child feel included.

When I arrived to pick her up at school today, I was greeted by several five year olds from the kindergarten class –dancing, laughing, smiling and enjoying ice cream by the playground.

Nestled in the middle of this handful of boys and girls sat my daughter, in her wheelchair.

Her teacher was feeding her ice cream while these children lovingly hovered over her.

As I approached, one student asked if she could feed Ryleigh.  One little girl asked if Ryleigh could go home with her.

Another was telling Ryleigh a story and making her laugh.

Not only were they interacting with her, they LOVED her!

One sweet child asked if I was her Mom. Then she said to me, “she is pretty, just like you.”

I felt a tear stinging my eye.

No one was staring at her being spoon fed.

Nobody was laughing at her wheelchair or pointing at her leg braces.  She was laughing with them and she was being included in the fun.  She wasn’t an outsider looking in.

They were focused on HER and they brought the party to HER.  They were her friends!

A child told me that she wished Ryleigh was her sister.  As I listened to them and watched them admire her, I admired them right back.

They treated her like she was a SUPERSTAR.

My heart was moved and my soul was elated.

For their kindness and acceptance, I was so very grateful.

Thank you, compassionate little ones, for not only being my daughter’s friends, but also for making her feel like a superstar.

This worry can consume you, if you allow it.

 

What if something were to happen to me and my husband?

Who would be there to take over our crazy day-to-day activities and provide all the unconditional love our children deserve?

Who would we entrust to be there to fill our shoes?

Honestly, NO ONE.
For us, it’s too scary talk about, or even think about.

We can’t imagine leaving them behind without us here to care for them.

 

Growing old and being unable to care for our children is another valid burden that we carry.

My eleven year old is highly intelligent and has a gentle, tender heart.

He is also on the Autism Spectrum.

While, I envision him going far in life, and can see him as a brilliant Scientist someday, a small part of me also harbors worry for him.
They have a bond that is quite amazing and she adores him equally.

He loves his little sister dearly.

 

She has intellectual and physical disabilities that impact every aspect of her life.

At four years old, walking and talking are goals that we work fervently toward.

But, the fact remains that she will need someone to care for her, always.

As her parents, we want to be the ones to be here for both of them and to provide the very best care for them, FOREVER.
His statement melted me into a puddle.

While playing with his sister one afternoon, my son looked at me and said something to me that stopped me in my tracks.

 

He said, “Mom, I’ll take care of her when you get too old.”

I was caught off guard and wondered how this little guy could see into his Mom’s soul, and know the worries that I keep quiet from everyone else.

I told him that we would never want to place burden on him and that he was way too young to worry about that now.

He went back to playing with her and said nonchalantly, “Ryleigh, you can live with me when I grow up.”
I saw a glimpse into my son’s heart that day.

As a mom, you want your kids to play well together and to get along.

 

It made me understand the true breadth of his love for her.

Although I try to push these future thoughts way back in my mind for now, I feel secure that he would never leave her behind.

I am assured that no matter what his future holds, he will see to it that she is taken care of.
Try not to let the worries about tomorrow take away your joy today.

One piece of advice I have for other parents of special needs children that bear these same woes: live life day by day, and just live in the moment.

 

There are beautiful moments before you; don’t let future worry steal them away from you.

A full-time, stay at home mom, spending my days like many others.

I get two children off to school, sort the laundry, clean the house (to some degree) and run errands for my family.

I help my son with homework, and then I make dinner every night.

Bath time and bed time routines are an important part of our evening.

These are all familiar activities that so many moms who stay at home raising children experience every day.

Beyond these typical daily duties, I am a Special Needs Mom.

My work day begins at 6:00 am and continues on, sometimes through the night.

Mornings entail measuring medications, bottle feeding my four year old daughter, and sticking to a strict routine to keep my eleven year old son calm and on task.

Hours are spent scheduling physical, occupational, social and equestrian therapy sessions, as well as routine and specialist doctor appointments.

Too many hours to count are logged contacting insurance providers, paying visits to school officials (I’m sure they LOVE to see me coming!), calling pharmacies and medical mobility equipment providers.

Attending therapies, and carrying over the learned methods at home take the place of hours once spent behind a desk in the working world.

Preparing special, high-calorie pureed meals and searching for gluten-free alternatives now replace taking leisurely lunch breaks.

Then, there is the overtime put in researching homeopathic remedies, breakthrough therapies, communication and behavioral tools.

On a really ambitious day, I even manage to take a shower!

These are just some of the duties that I am responsible for in my job description of Special Needs Mom.

These tasks, as mentally taxing and exhausting as they can be, are proudly carried out with love each and every day.

And you must know, they truly yield the most beautiful rewards.

For this line of work, there is no paycheck, and there are no paid vacation or sick days.

However, a bright smile and a giggle from my amazing daughter or a tight hug from my incredible son is PRICELESS compensation.

They make all the difficult moments of my day melt away, and they are worth every second of it.

Life is not easy being a Special Needs Mom, but each day my heart overflows with the joy that my children bring.

I find myself to be so much more grateful at this point in my life than I have ever been.

This roller coaster of a journey that I never expected to take has become the beautiful path that I was always meant to travel.