Sitting and holding my six year old daughter, we have the most beautiful conversations…without any words.

Although I dream of the day that she will say, “I love you, Mommy”, I can feel that sentiment when she sweetly looks up at me or gently holds my hand.

Admittedly, it is difficult to interpret exactly what she needs, wants or is thinking on motherly intuition alone.

There is another aspect of having a nonverbal child that is far worse than that; and it’s completely heartbreaking and unfair.

She lacks the ability to tell us when she hurts.

One of the absolute worst feelings of helplessness that I’ve encountered as a mother is hearing my daughter cry and not knowing why.

When you don’t know why, you can’t fix it.

If she could tell us when she hurts, it would not be a guessing game every time; a process of elimination to figure out the root cause.

We wouldn’t have to scrutinize each body system, looking her over from head to toe, and trying to reason out the cause of her pain.

The immediate worries always include her chronic GI issues and hip pain.

If we can rule those out, we investigate other sources…could it be an ear infection or a urinary tract infection?

If she could tell us when she hurts, we could save her days of agony caused by a misdiagnosis.

Once she had a foreign object in her eye for a week, unnoticed as she was being treated for a corneal abrasion.

After daily visits to an eye specialist to assess her healing, the tiny, scratching object was finally discovered by her Dad.

We had no idea that something was embedded far up in her eyelid, causing her constant pain.  After it was revealed, it was obvious why healing hadn’t yet begun, despite the rigorous antibiotic treatment.

If she had the ability to tell us, we could have saved her days of unnecessary distress.

If she could tell us when she hurts, we could spare her from suffering seizures that come on from fever, brought on by underlying infections.

After an ER doctor diagnosed her with a viral infection once, she was in unimaginable pain for an entire weekend.

When it didn’t subside and she stopped eating and drinking, we knew something more was wrong.

A trip on Monday morning to her Pediatrician confirmed a severe case of strep throat – a condition that left untreated could cause detrimental complications.

Again, if she had the ability to tell us, we could have rescued her from unrelenting discomfort.

As much as I’d love to hear her sing “The Itsy Bitsy Spider” along with me, or listen to her tell me how her school day was, these are not the reasons that I ache for her to have a voice.

I long for her to have the ability to tell me when something is not right, so that I can do whatever is needed to help her.

We are now embarking on a journey to teach her how to use an AAC (Augmentative and Alternative Communication) device.  We are determined to find a way to give our child a voice.

Even if not through speech, we will strive to facilitate communication, so that she can tell us when she hurts.

We wish to give her the means and the capacity to express the need for help.  Everyone deserves that right.

Even if it’s through her pressing a button to tell us, at least we’d be able to fix it.

I thought that life’s plan was easily mapped out before me and things would magically fall into place.

On the list was:

Graduate College…check.

Get a good job…check.

Get married…check.

Have babies…check.

I had no idea of the events that would unfold in my life that would make me realize that my plan had a serious detour coming.

Abruptly, the real world, the universe swiftly kicked me in the pants with a wake-up call.

All of the wonderful milestones of life that I had dreamed of did take place, and I’m blessed beyond measure to have a wonderful husband and two beautiful children.  But, I have learned that the easy road doesn’t exist.

As a special needs mom, I do things every day that I never imagined I would do.  For the ones that matter most, I’ll never say never when it comes to what is best for my children.

I always thought that doctors knew best and if one recommended a prescription medication, we should take it, without question.  WRONG.

Having a child that depended on ADHD and Anxiety medications, one day I became enlightened.

We shouldn’t have to medicate our children so that they can make it through a school day.

Feeling fed up with how things were going, we decided to homeschool.  We learned that classical music improved concentration and that our son loved it!

A stay at home mom with a child doing schoolwork from home?  I never thought that would be in my plan.

We also found a specialist that understood our concerns of the side effects of stimulant and anti-anxiety drugs.

We found support, natural medication and we successfully stopped the prescription medications. The result – a happier, healthier, well-adjusted boy!

I never thought I’d be a mom that would spend hours researching holistic and natural remedies.

When my daughter’s reflux medication stopped working effectively, the “solution” was to add another medication into the mix for her.  A medication that had the potential to someday affect her one solitary kidney.

The meek person that I once was vanished; enough was enough. A mom who would have never questioned the expertise of a physician now questioned everything and picked apart every single detail.

Essential oils, apple cider vinegar and a plethora of other remedies are out there – and I will log many more hours researching to find what naturally and safely works best for her.

Political government was something else that I never thought I’d insert myself into. How ignorant I once was to believe that as a citizen it wasn’t my duty to take an active stance for others.

I am no longer afraid to stand up for what I believe is right.

My children gave me reason to become involved and to stand up and speak out for those without a voice.

I never thought I’d shake hands with Senators and thank them for supporting a Medical Cannabis bill in our state…and I never thought I’d be writing letters and making desperate phone calls to opposing Representatives, pleading for their support of it.

In addition, threats to our children’s medical coverage and to the Individuals with Disabilities Education Act by lawmakers has given way to a louder, stronger mom that will never sit idly by again.

I’ve learned many beautiful, difficult and uplifting lessons because of my children.  I’ve adjusted my sails and I take life’s path in stride.

Although I never imagined this is where I would be, happily, I know this is where I’m supposed to be.

This is where I’m meant to be.  Now, I know better, and I never say never.

There is comfort and contentment in resting after climbing an arduous mountain.

The mountain, in this case, was when my daughter endured complicated and painful hip surgery at five years old.

Bilateral Varus Derotation and Dega Osteotomies to be exact.

Congenital Hip Dysplasia is a condition that accompanies her rare genetic disorder, and these procedures were done in hopes of preventing early onset arthritis.

Once she had crossed over this great obstacle, gotten past the pain, healed and had finally overcome all the setbacks, we thought we were out of the woods.

She worked hard to recover and to regain the skills that she had lost.  With time, she was crawling again and able to bear weight again in a stander.

While she has yet to take her first independent steps, together, we work hard towards someday making this dream a reality.

With mighty determination and strength, she took steps in a gait trainer, all by herself, 17 months after her a surgeon transformed her hips.

For a moment, the woods were far behind us.

We feared going back into the woods when she had to have the plates and screws removed, 10 months after the operation.

It was an easier procedure, and we knew going in that the recovery would be a breeze compared to the first time.

Nonetheless, the feeling of leaving your crying child in the arms of a surgical team is heartbreaking and terrifying.

Thankfully, she sailed through, fought like a warrior, and bounced back quickly the second time from the setbacks. Finally, we could move forward again.

This time, we brushed ourselves off, confident that we’d never have to trek through those woods again.

We met every post-operative appointment hopeful; and were always encouraged when everything appeared perfectly in place on the x-rays.

We would leave the surgeon’s office gleefully after each visit, reveling in good news.

The woods had become a distant memory, until our most recent post-operative appointment. The x-rays are no longer perfect.

There is yet another procedure she may have to withstand.  While our surgeon is world renown and has her best interest at heart, we await a panel discussion of her case by other orthopedic professionals.

The decision of whether or not to have it done would be much easier, if we had a crystal ball.

Do we put her through more surgery if she may never walk independently?  Do we put limits on her and deem it unnecessary?

My gut tells me we need to give her every chance possible, yet my heart aches at the thought of causing her more pain.

We have found ourselves right back where we were 18 months ago, scared and alone in the woods.

Parents of children with special healthcare needs and disabilities live our lives on a roller coaster.

There are many ups and downs, and surprises at every turn.  There are thrilling, breathtaking twists and there are devastating, distressing ones as well.

As other parents on this path can relate, we know that we will never quite be out of the woods.

Therefore, we must learn how to survive there, and arm ourselves with all the right tools and resources, to help us make the best decisions for our children.

Once as my son and I were pushing his sister in her wheelchair down the aisles, a kind lady approached us.

I will never forget that unexpected meeting.

She told me that she was a mom, just like me, and proceeded to show me photos of her beautiful son in his wheelchair.

When our chance meeting ended, we hugged and she told me how we were, in a sense, sisters.  That ultimately led to my frantic search for tissues in my diaper bag, to dry my overflowing eyes.

Recently, another unforeseen moment of impact hit me as I shopped.

There was an elderly couple with what I assumed to be their middle aged daughter.  The three of them walked slowly together; the parents lovingly helping their adult child maneuver through the store.

She had the brightest smile and it was completely obvious that the three of them mutually adored each other.  I am not certain that she was nonverbal, but that was my impression.

My daughter is nonverbal, and I could just sense some similarities between them, on some strong parental wavelength, perhaps.

I couldn’t help but stare at them…I wasn’t gawking at them by any means, I was watching them in admiration.  I was gazing at them and feeling a sense of familiarity.

I could see a glimpse of my own disabled daughter, many years down the road.

I also saw a glimpse of myself and my husband in the elderly couple.  They were holding on to her so tightly and helping her to walk. They did not waiver and they kept a slow and steady pace.

I went on about my business and finished up my shopping.  While in the check-out line, I saw the mother walking the daughter to the restroom and helping her make her way inside.

I felt that familiar lump in the throat start to form, and the hot sting of tears starting to burn my eyes.

I could see myself doing this in thirty years…..and I knew I would do so with pride.

I thought about them all the way home.  And I still think of them often.

My daughter will need me and her Daddy always and forever.  That scares me beyond words, as I know the day will someday arrive when we have to leave her on this Earth without us.

It’s a thought that I push way back in my mind and can’t allow myself to focus on for long.

She will have her brother, and that brings some comfort.  But, she will always need US.

Putting myself in the shoes of the mother at the grocery store, I know that she probably feels those same, real fears.

As a mother of a daughter with multiple, profound disabilities, I will gladly care for her, carry her and protect her as long as my own body holds out.  Her Daddy and I both will.

It will be an honor and a privilege, because of the immeasurable love that we have for her.

I know many people feel like they’ve been bombarded with blog posts and articles online criticizing them for using the, “R Word.”

They feel that parents of children with disabilities are “too sensitive.”

This post isn’t one to belittle or chastise those in our lives that have used this word in our presence, or those that think we are hypersensitive.

It is rather an attempt to urge people to simply STOP using that word; to banish it from vocabulary altogether.

This is a post to educate and to turn moments where you may have nonchalantly used that word into teachable moments.

When I was younger, I’m sure I used that word in a joking manner.  I’m sure I laughed at that word when it was used in movies or on television shows.

In fact, I know I did.

While I can’t go back in time and change my past mishaps, I can move forward and share with the world why it was wrong.

Whether you are joking with friends in conversation, or sharing posts on Facebook using the “R Word”, you are unknowingly hurting others.

You probably aren’t vengeful or filled with hate, but you are inflicting wounds.

The word in itself means “characterized by a slowness or limitation in intellectual understanding and awareness, emotional development, academic progress, etc.”

Another definition for it is “slang –stupid or foolish.”  When my daughter was an infant, she was diagnosed with a rare genetic disorder, characterized by many traits.

One of those traits that forever stands out in my mind; one that I still remember staring harshly back at me from medical paperwork was “Moderate to severe Mental Retardation.”

From that moment on, I knew there was nothing funny, appropriate or acceptable about that word.

This word punched me in my gut and took away dreams and hopes that I had for my child, in an instant.

Although the reality can at times still be hard to swallow, the word has since been changed, thankfully, in medical literature to “having intellectual disabilities.”

Therefore, it shouldn’t be used anymore, ever, for any reason. Period.

When you call someone or something the “R Word”, you are saying they have intellectual disabilities.

My daughter is intellectually disabled, and I’m certain, beyond a shadow of a doubt, she wouldn’t find any humor in jokes at her expense, or at the expense of others.  Neither does her Momma.

She is also the most amazing, smart, strong and beautiful little girl I’ve ever known.

One of my proudest parental moments EVER was when her older brother was playing a video game online with friends and a child used that word.

He immediately called him out, shouting: “Dude! What did you say? That is NOT cool!”

If you do still use this harsh, hurtful, outdated word in your own vocabulary, or if you laugh with others that do, please understand why we ask you to stop.

Surely you don’t have someone in your life with disabilities.  Or, perhaps you do, but haven’t fully evolved to see the ache that the word creates.  I hope that you will.

I know that I am not alone in saying that parents of disabled children feel sickened, infuriated and heartbroken when people use that word in our presence.  And rightfully so.

We urge you to think twice before you say it…there’s no need for it.

We’d be very happy to never hear that word again.

Even when it’s a minor operation, your mind races with worry because SURGERY is a scary word.  Anytime anesthesia is involved, especially if your child has special needs, panic can quickly set in.

When my daughter needed major hip surgery, these emotions were overwhelming.

My daughter was born with a rare genetic disorder, and one of the common features of it is congenital hip dysplasia.

We began seeing an Orthopedic Specialist when she was three years old.  We were told that her hips popped in and out of their sockets and in the future, this could cause early onset Arthritis.

Picturing my baby as an adolescent in constant pain, this was very frightening.

We met with our specialist many times, looked over several x-rays, and tried various methods to “fix” her hips in a non-invasive way.

Nothing worked.

Each time, the x-rays looked the same.  No improvement.

Our specialist waivered back and forth at each visit…once he told us that since she’ll “never run a marathon”, surgery wasn’t 100% necessary.

At another visit, he told us that even with crawling, the demand placed on her hips was high.  The surgery he recommended would entail cutting into both of her femurs.

It was risky and there was a chance of severe blood loss.  The mere thought of this made me want to pass out, but knowing we wanted her to live free from pain, we seriously began considering the procedure.

In order to reassure ourselves that we were making the right decision, after two years with this specialist, we sought out a second opinion.

On the anxiously anticipated day of our consultation with the new Orthopedic Surgeon, we quickly realized that fate had stepped in.

This doctor worked in a beautiful Orthopedic Children’s Hospital, and the environment was completely warm and inviting.  Within minutes of meeting him and hearing his impressive credentials, we started to feel some relief.

He confirmed from her x-rays that surgery was necessary, if we wanted to enhance her quality of life.

When I told him that we didn’t know if she would ever walk, he responded in the most incredible way.

“I’ve seen plenty of miracles happen.”

Then, talking over the procedure, he explained that she needed Dega and VDRO surgeries done.  This meant that the femurs would both have to be cut and the femoral head (ball) of each would need to be repositioned.

Also, her acetabulum (socket) on both sides would need to be reshaped.  That was a great deal of information to swallow.

Our new specialist was a pro at these procedures and made us feel as comfortable as possible in the given situation.  He explained it all in a way we hadn’t quite understood before.

He also told us something else that ultimately sealed the deal for us.  “My team and I will pray over her before we begin her surgery.”

That meant a lot to two scared parents.  We held our breath, and scheduled the surgery.

After a few months of dreading the upcoming surgery date, we took our five year old in and handed her over to this man.

We were filled with tears and it was gut-wrenching to let her go.

But we had the feeling that she was in the best of hands.

He was gentle and caring and he put us at ease with his positive attitude and kind demeanor.  He emerged over three hours later and greeted us with a hug and wonderful news.

Our daughter had done extremely well and there was minimal blood loss.   Weights were lifted and we knew the road to recovery ahead would be tough, but she had made it through.

We had absolutely chosen the right surgeon.

Fast-forward 11 months….she recovered amazingly well and we are without a doubt glad we had the procedure done.

She’s since been back there for another surgery to remove the hardware placed in her hips, and we were again met with his gentle and expert care.

Second opinions can be a wonderful thing…I’m glad we trusted our gut and looked elsewhere, finding this fantastic surgeon.

We now have some fabulous x-rays, showing off perfect hips and a happy, thriving daughter to show for it.

The nurse that gently lays the baby on your chest fails to also include a handbook…..a handbook filled with all the definitive answers to the questions that new parents face.

Instead, you embrace your beautiful bundle of joy and soon head out into the world with him; to figure it all out on your own.

It is terrifying.

Being a mother to a daughter with multiple disabilities and a son on the Autism Spectrum, that instruction manual sure would have been handy.

When my son wouldn’t chew and needed feeding therapy until age three, some clear- cut answers would have been most helpful.

The moment when we realized that tags in shirts, “hurt”, and when we experienced our very first meltdown, some straightforward directions would have been greatly appreciated.

I can remember years ago trying to maneuver through this uncharted territory for us and desperately asking, “WHERE IS MY INSTRUCTION MANUAL?”

The first time I heard the terms, “504 Plan”, “Profoundly Mentally Disabled”, and, “Seizure Disorder”, a book filled with specific instructions on how to react, how to move forward and how to breathe was seriously needed.

Upon learning of diagnoses and absorbing the initial blow of Autism and Chromosome 1 Deletion, (within five months of each other) I could have really relied on a foolproof method to tell me how to cope.

I needed something tangible to teach me exactly what to do, step-by-step, to ensure I didn’t screw everything up.

As the years have gone by, I have thankfully crossed paths with many amazing, brilliant and caring therapists.  Occupational, Physical, Speech, and Social therapies are a part of everyday life.

I have gained invaluable knowledge from them that has helped propel me forward; helped me to grow and learn to be the mother that my children need.

I have been lucky to forge friendships that are built on a common foundation – our children.  Meeting others that walk in my shoes, who are also trying to figure this whole thing out, has been a saving grace.

We share advice, joys and sorrows.  I have gained a better handle on this life, with their help.

More than anything else, the one thing that has replaced that coveted instruction manual is love.

The unconditional, unstoppable, unmeasurable love that I have for my children is my constant drive.

Situations arise constantly that I am unprepared for.

A new type of seizure, a new anxiety trigger and the need for major surgery have all snuck up on us within the last year.

Hurdles will always pop up in our way.

We just have to keep jumping those hurdles.

As long as there is breath in me, my priority will be learning how to make life better for two incredible little people.

Beyond all else, they are my children….showering them with love requires no instructions.

Your presence here over the last six years, in this world and in my life has had more impact than you could ever know.

You have made me a better person and on your birthday, we celebrate you!

On your birthday, I can remember the very moment of your birth.

As your Daddy and I awaited your entrance with excitement and fear, I desperately needed to hear your first cry.

Seconds dragged on for what felt like hours, and then, I finally heard it.

The sweet sound that I had worried for weeks that I may never have the privilege to hear.

You had made it into the world and your cry was the most melodic sound I had ever heard.

You came in as a fighter, and you have been a fighter ever since.

There are things that I once imagined we would do on your birthdays, like seeing you blowing out the candles, watching you eat birthday cake, and running around with your friends.

As time has gone by, I realize those ideals of a birthday celebration are inconsequential.

You have opened my eyes to what is truly important.

As long as you’re here, I will proudly blow out those candles for you.

I will feed you icing off of your cake, along with some ice cream, and it will be an honor.

On your birthday, I reminisce on the early days of our journey together.

You were so tiny. I was clueless and afraid and I wanted to learn everything I could so that I could be the Mommy that you needed.

The Mommy that you deserved. I am still learning.

We started down a road into a whole new world together.

As we continue down this road of life, I will graciously carry you. From now until my own body fails, I will carry you.

I will also push you to reach your goals. You have a fiery tenacity about you…it serves you well with the challenges that you face.

I have seen you tackle obstacles in your way one after another and rebound like a warrior. All the while, laughing and smiling. You make my heart swell with pride.

I will always have your back and help you reach for the sky.

On this day, your sixth birthday, I celebrate the incredible, charming, strong and joyful person that you are.

You are truly a gift from above.

When I imagined having a daughter, I never fathomed that I could love her as much as I love you.  I am thankful every day for you.

HAPPY BIRTHDAY, RYLEIGH xxx