For parents, the first day of school is typically fueled by varied emotions.

Excitement, anxiety, and hopefulness are often accompanied by a bit of retrospection.

Summer has ended and our children are a whole year older.

For some, there is a great sense of relief, as the return to routine commences.

As a mom, I’m enthusiastic each year for a fresh new beginning. As a mom to a child with multiple disabilities and special needs, I’m also TERRIFIED.

The anticipation of dropping her off and being away from her fills my thoughts with worry.

Will all her needs be understood and met? What if she has a medical emergency and I’m not there? Will everyone show her kindness and compassion? What hurdles and fights will we encounter this school year?

On the first day of sixth grade, as we head out the door, her brand new, pretty, pink bookbag is overflowing.

“Ordinary” school supplies aren’t causing it to burst at the seams.

There are no pencils tucked inside.

There is no ruler or pair of scissors.

She won’t require notebook paper or a calculator.

Her heavy bookbag hangs off the back of her wheelchair, holding more vital, necessary items.

It contains pieces of her life that must travel with her, everywhere she goes.

Over and over, I nervously review my mental checklist of things she will need:

Diapers, wipes, diaper cream, extra clothes…

Seizure medication, syringes, seizure rescue medicine, portable blow-by oxygen tank…

Seizure emergency plan, medical diagnosis forms, medication administration forms…

In place of the cute, one-page “All about Me” info sheet that young children take to their teachers on the first day, my daughter has an extensively organized BINDER.

It is a bulky, three-ringed notebook, complete with a breakdown of her diagnoses and how they affect her day-to-day life and learning.

It is jam-packed with information on her strict diet, sensory needs, seizure triggers and interventions.

Along with the overstuffed bookbag and the ample binder, our van is also teeming with a plethora of other essential daily items…

Ankle-Foot Orthotics, Knee-Ankle-Foot Orthotics, Speech Generating Device, a lunchbox adorned with unicorns and filled with pureed, dairy-free, and gluten-free foods.

As we get ready to leave home, I can see the happiness in her eyes when I ask her if she wants to go to her “Big School.” She claps her little hands emphatically and a sweet grin stretches across her face.

I squash down my fears for the moment and relish in the pure joy that she radiates.

When we arrive, I summon the courage and work hard to hold back the tears.

I am sending my non-verbal child with complex medical needs out into the world again, and it is scary.

As I push her chair up the walkway and watch her delight, I remind myself that her very competent team is in place and her education and medical plans are solid.

She needs this…I need this.

We greet her wonderful teachers; they offer me much empathy and ensure me that my child will be well-loved, and in good hands.

A few minutes later, I have a quick cry in my van, and realize I didn’t even capture the occasion with a photo!

I then dash directly to Starbucks for a stress-reducing reward of espresso and chocolate. It will all be ok.

The hours of day one will tick by, ever so slowly, but we’ve ultimately tackled this initial feat of going back to school.

Thankfully, it doesn’t take long for our new routine to set in.

After only a couple of days, I am reminded of how beneficial school is for my girl.

Parents of children with disabilities and special needs, we’ve got this.

Every year, our “Back to School” may look a little different; it may be a bit more challenging, but we get through it and push forward.

We have great big goals to achieve!

When my son became a big brother at age six, he also became so much more.

He instantly transformed into a protector, a doting role model, an empathetic helper, and the best buddy to his baby sister.

He has stood proud in these roles from the very beginning.

When our tiny, four-pound miracle girl came into the world, little did we know that her brother would also become a hero.

We had no clue as to the lessons he’d be forced to learn, at a very young age. As a sibling to his sister with complex medical needs and disabilities, he has carried a lot on his shoulders over the past 12 years.

He has timed innumerable seizures and called 9-1-1.

During a recent, very scary grand mal seizure, I heard him calmly relate to a dispatcher that we had been waiting on an ambulance for twenty minutes and his sister needed help, immediately.

He knows to open the door and step outside to flag down an ambulance as it drives up. A child shouldn’t have to know such a burden as that.

He has felt a sense of crushing worry that a sibling should never have to feel.

He has become a pro at securing his sister’s wheelchair into our van. He unhooks the latches and jumps out to let her ramp down whenever we park, without being asked.

When she shakes her head “no” and refuses to take her medicine for me, he willingly steps in and easily administers it, without any questions. It’s all second nature to him.

When she’s sick and running a fever, he will pop into the room repeatedly to check on her.

Every day when she gets home from school, he instinctively asks how her day was and he promptly puts on her favorite TV show.

My son has tagged along to countless therapies and specialist appointments. Offering to lend a hand to carry things and hold doors open for me, he NEVER complains about it.

He’s missed out on planned outings due to her being ill and he’s made sacrifices that most siblings couldn’t imagine.

When he was 11, he once told me that he would take care of his sister when I became too old.

That was a defining moment I’ll never forget; my heart felt as if it exploded with his profound statement.

I also worry about him too, and I wish for his life to be fulfilling and happy.

He’s eighteen now and has his own agenda, but I know that he will always make sure that his sister is well cared for.

Even though he’s older, and they don’t read books together or play together quite as much these days, the bond between them is still obvious.

He makes me prouder than he’ll ever comprehend.

Siblings like him, who walk in these similar shoes, are so very strong and resilient.

In my eyes, he’s a Superhero. I’m pretty sure his sister sees him that way to

From the moment I received my daughter’s rare genetic disorder diagnosis, I wondered if she would ever know her family.

Would she recognize us? Would she understand how deeply she was loved by us?

At age 11, watching her identify her family members on her communication device, I am confident that I have my answer.

Ryleigh absolutely knows her family and she deeply understands the concept of love.

I watch her touch the photo of her Daddy when I ask her, “Where is Daddy?” It’s obvious that he’s her #1 favorite, as a bright smile stretches across her face as she responds to my question.

It amazes me every single time. She can also point out a photo of me and one of her big brother, when asked to.

This feat may not mean a great deal to most, but to us, it is COLOSSAL. She has mastered a goal that we once feared to be far out of reach.

One year ago, we were striving to help her greet others by waving for “hello” and “goodbye.”

A skill that babies learn very early on was a challenging goal that required much motor planning and coordination for our girl.

We practiced with a photocopy of her own hand; a symbol that she could hold up in her therapy sessions to greet her Speech Therapist.

One morning, after many tedious months of practice and repetition, my heart melted into a puddle at what I witnessed.

As we had done countless times before, my husband and I took turns exclaiming, “Hey Ryleigh!” We waited, giving a patient pause.

Suddenly, she raised her little hand and purposefully and methodically moved her tiny fingers up and down.

She was waving to say “Hello” to us! It was a completely magical and beautiful sight. Without any words, she told us so much with this most meaningful gesture.

As a parent of a child with physical and intellectual disabilities, I still have BIG dreams for her. No diagnosis could ever change that.

Our goals and dreams simply look different than those held by other parents. There are goals that we’ve diligently worked towards for many years; they’ll likely take many more years to master.

Progress comes slowly, but steadily.

In her own time. Watching her walk independently someday, without a walker or her orthotics, is a lofty aspiration.

I see it vividly in my dreams. I fiercely hold onto hope that it will eventually happen.

One of my most favorite quotes is, “Believe in your child so much that the world thinks you’re crazy. Then, believe more.” I’ll keep that as my mantra and celebrate every inch forward, as she continues to astonish us.

“The most important thing in communication is hearing what isn’t said.”

As a mother to a nonverbal child with multiple disabilities and complex medical needs, this quote resonates with me.

Tremendously. Sometimes, I misread those unspoken messages.

As hard as I try to translate nonverbal cues, I often fail to interpret the signals correctly. If I had one wish, it would be for my daughter to have the ability to speak.

Not only to hear “I love you, Mommy” in a soft, sweet, angelic voice…

Not only to hear every detail of her day at school, instead of reading about it on paper and trying to fill in the gaps…

Not only to hear if someone was unkind to her…

When my beautiful, 11-year-old daughter is sick or in pain, time and time again, I desperately wish for her to be granted the gift of speech.

It’s in these times when I long to hear her voice the most. If she had the power to express what she feels with spoken words, I could save valuable time spent guessing and investigating…I would know with certainty, and I could FIX it.

We are working diligently on teaching her how to communicate with an Augmentative and Alternative Communication device.

She has made valiant strides, but this intricate artform is a work in progress.

Of all the things she’s beautifully learning to “say” with her device and also with pictures and gestures, “hurt” is a concept that is exceedingly challenging for her to convey.

She was sick recently with a stomach bug, that in turn irritated her stomach and throat, finally settling as ear infection.

She rarely cries. She never stops playing to lay her head down and rest.

When this does happen, or when she spikes a fever and has a febrile seizure with no obvious cause, we know SOMETHING is wrong.

During sleep, if her heartrate is high, we know SOMETHING is wrong. Her Daddy and I quickly transform into sleuths.

We explore every possible scenario that could be occurring. We carefully consider and investigate every conceivable origin, from head to toe. It breaks our hearts when she can’t tell us what hurts.

All the while, we try with all our might to hear her words that are not spoken.

Countless times, bloodwork and other invasive tests have had to be performed to diagnose a problem; to narrow down and eliminate potential culprits.

She’s endured numerous painful spinal taps, urinary catheterizations, and needle sticks over the years.

I try to never throw the word “unfair” around carelessly, but this IS unfair to her; it shouldn’t have to be this way.

I NEVER feel sorry about our situation but watching her suffer without the ability to express it verbally absolutely renders me helpless.

I will always wish for this one, solitary, precious gift.

While she is unable to relate her feelings with spoken words, I will continue to carefully listen with each and every one of my senses.

I will work tirelessly to help her find her voice. She has so much to say.

If someone would have told me in February that our “normal” life would soon come to a halt and that a virtual school program was in my daughter’s future, I would have thought the notion was preposterous. 

Unbelievable.  Inconceivable.  Yet, here we are. 

Parents of children with disabilities are anything but novices when it comes to making tough decisions. 

This is something we are constantly and consistently faced with.  However, this year, we’ve crash landed in brand new territory. 

We’ve been tasked with making unfathomable decisions, while in the midst of a pandemic. 

We have impossible choices to make and some of us question ourselves nonstop.  We ask ourselves repeatedly if we have chosen wisely. 

Having a daughter with multiple disabilities and learning differences, choosing a completely virtual model for this school semester was a strange call for our family to make. 

She loves her school and adores her teacher and her classmates. 

However, she also has complex medical needs.  Flu season is scary enough for us; respiratory infections are extra difficult for her to fight off. 

Fever notoriously brings terrifying seizures.  Our son has been enrolled in a virtual school program for the last six years.

He is a successful, independent learner and enjoys working at his own pace. 

Even though this is not the case for our daughter, and she requires one-on-one direction, for the sake of her health and safety, we chose to keep her home.

We made the right decision, didn’t we?

While she was thriving at home and we settled into our new routine, we missed our vital therapies.  OT, PT, Speech, Feeding and Aquatic therapies were all key parts of our busy life before this abrupt change. 

Despite our worries of regression, we continued to keep her home, away from all that she was accustomed to. 

We made the right decision, didn’t we? 

No matter how many times I deliberated with myself, in my heart, the answer obviously was always YES.

The health and safety of our vulnerable child was first and foremost. 

Even though we were diligently working with her at home, there was always a sliver of worry; we didn’t want her to lose the valuable skills that she had worked so hard to attain. 

After six months of being without our in-person therapies and supports, we made the arduous decision to start back with some limited face-to-face visits. 

The first time I dropped her off at the door for Physical Therapy and watched her being pushed in her wheelchair by someone other than myself or her Dad, it hit hard. 

Tears stung my eyes as I walked away. 

Although I was thankful for all the safety procedures set in place, and I trusted that she was in good hands, it was so difficult to leave her. 

We were no longer covered in the security of our safe, comfortable bubble at home. 

My child had been safely glued to my side for the last six months.  I had tormented myself with uncertainty before that first session. 

As I waited on her, my eyes were fixated on the therapy room door, watching for her to emerge. 

I sat in my car as the minutes ticked by, at a snail’s pace.  I called my husband, and I asked him,

“We made the right decision, didn’t we?”

In the months following, we have slowly added a few more in-person therapies back into our routine. 

We’ve even transitioned from Telehealth to many necessary face-to-face doctor’s appointments. 

Every single time we venture out into the world, after shielding for so long, I hold my breath and wonder if we’re doing the right thing; if we have in fact made the right decision. 

Witnessing the excitement on her face as she sees familiar people she’s missed and watching her easily bounce back into the swing of her old life, it feels right. 

We exercise an abundance of caution in everything we do.  We do not live in fear, but we are extra meticulous in the precautions we take. 

In time, we are optimistic that we will be able to fully return to our “normal” life.  Until then, we remain vigilant. 

We continue to be extremely selective with the activities our family engages in, using careful consideration. 

For now, we assess each situation, hold tight to hope, and do our part to help things get better.  It must get better. 

We ALL wish to return to some semblance of what life was like before this. 

We reserve the right to question ourselves and our decisions at every juncture, and to change course if necessary.  

For now, we stand firm and believe that we made the right decision…the decision that’s right for US.

Sitting in a cheerful, brightly colored waiting room of the children’s radiology department, the hands on the clock move ever so slowly. 

A test that should take approximately two hours drags on into nearly five. 

On a fact-finding mission for answers regarding our daughter’s chronic GI issues, my husband and I can’t help but become a bit restless, as we sit in wait.

After the initial three trips into the X-ray room for fluoroscopic studies, completing one every thirty minutes, her anxiety seems to be conquered. 

The tears and fearful cries have all but vanished, thankfully.

With every medical appointment, panic sets in and we do our best to calm and soothe her. 

Trying to help your frightened child understand what is happening is heartbreaking.

I hate the fact that she has to endure so many tests, and this one is no picnic. 

Surrounded by loud noises, being forced to drink a terrible tasting solution, being confined to a tight space, and having strangers all around must be such a tremendous assault on her senses. 

I wish I could take her place.

As we wait between pictures, we’re worried, hungry, under-caffeinated, and anxious. 

Meanwhile, our gleeful girl is being such a trooper. 

She’s contently snuggling with her Dad, watching cartoons. 

She is happy and comfortably settled.  I am in awe of her incredible ability to take all things in stride. 

Watching her, as she seems perfectly at home now, I am at ease and can relax.

We wait.  Time continues to crawl by, hour by hour, as we are eager for the barium solution to do its thing. 

We take turns carrying our sweet girl back and forth to the little room for her X-rays. 

We’re hopeful the Radiologist can get some clear views of her GI system and provide us with a favorable report. 

As we are entertaining our girl and trying to creatively pass the time, another mom comes in. 

She is pushing an adorable little girl in a pink wheelchair.  She says “hello” and I reciprocate. 

I comment on the beautiful, sparkly bow in her daughter’s hair and she tells me that she loves my daughter’s shoes. 

We take notice of the beauty of each other’s child, and we exchange greetings to both brave girls. 

My daughter grins at the new friend across the room from her, in the wheelchair that closely resembles her own. 

The mom candidly shares with us that they have just received the best news. 

Her daughter can now start eating by mouth, at thirteen years old. 

She’s wearing a mask, but I see a great big smile, twinkling in her eyes. 

I am overjoyed for this mother and her child in their moment of celebration. 

We had never met before, yet we cheered and shared excitement together, as if we were old friends.

We went on to talk surgeries, therapies and diagnoses together, without any apprehension.

As our new waiting room neighbors prepare to leave, I hold the door for them and congratulate them again. 

There is a unique comradery that forms quickly between parents of children with complex medical needs. 

When we meet, unexplainably, there is a connection.  A mutual respect and understanding between strangers. 

Even though our stories are not identical, we empathize with one another’s victories and hardships in a way that most people couldn’t understand. 

The monotony of waiting had faded away and my heart was happy for their momentous win.

We received good news that day too.  A day of waiting gave way to wonderful results. 

Over the past ten years, we’ve spent a lot of time sitting in wait.  In more ways than one. 

There will be much more of that to come.  That is simply just a part of this life. 

When you receive answers that you desperately need, and cross paths with others that leave a bright spot on your day, every second of the wait is worth it.

When babies are born, parents instinctively check that all ten fingers and all ten toes are perfectly placed.

There was no need to inspect every inch of you, my tiny precious one. You were already perfection.

I only needed to hear your first cry. A boulder of worry was lifted from my shoulders at that very moment.

All the reassurance that I needed came from that one, long awaited, beautiful sound.

Knowing that there was breath in your lungs and strength in your heartbeat, every other detail instantly became insignificant.

You were here with us and that was absolutely all that mattered.

You began capturing the hearts of everyone in your path, from day one.

Your Daddy and I fell completely head over heels at first sight. Your big brother beamed with pride when he finally got to meet you in the NICU.

He was only six when you came along and I will always remember the tender look on his face as he exclaimed, “She’s AMAZING!”  You were so small, but the fight in you was mighty.

For weeks, we were intently focused on your getting stronger so that we could bring you home.

We never expected that our magnificent little gift from above would become such a catalyst for big change.

You quickly set us on a path towards becoming better people.  Your presence in this world instantly made our lives BETTER.

Now, in a few short days, you will be TEN.  Two whole hands.  Double digits.

Looking at your sweet face, watching you stretch your arms up to be held, I am so thankful for ten.

Sitting with you, reflecting on all the challenges you have gracefully overcome and all the steep mountains you have climbed, I couldn’t be prouder of where you are, at ten years old.

Reflecting on all the infinite lessons you have taught us, I am THANKFUL.

THANKFUL for the unwavering strength in you that has brought out the strength in all of us.

THANKFUL for all the moments of pure joy that you continuously bring to our lives.

THANKFUL for the true understanding that love needs no words.  Feeling the touch of your little hand on mine while I sing silly songs to you.…Seeing the light in your eyes and hearing you squeal in delight when your Daddy walks through the door…Beautiful reminders that  “I love you” can be expressed without a spoken word.

THANKFUL for the wisdom you have instilled in us that we must always focus on our abilities.

THANKFUL for every magical moment I get to spend with you.

THANKFUL for ten years of being your Mom. There is no greater honor in this life than taking care of you and your brother. Ten years have gone by in a blink.  I hope and pray every day for at least fifty more.

THANKFUL that at ten, you still love to snuggle as I read your favorite book to you. I feel as if the words in the story were written specifically about you.

“Heaven blew every trumpet and played every horn on the wonderful, marvelous night you were born.”

Happy 10^th Birthday, sweet girl.  I am so incredibly thankful for you.

Sometimes, we do not get to choose the journey.  Instead, the journey chooses us.

The most intricately designed plans are not always carried out as envisioned.  Sometimes, curve balls are abruptly hurled at us, knocking us off course.  Our plans become forever changed.

My family’s journey swiftly changed when we received my son’s Autism Spectrum Disorder diagnosis.   Months later, we would meet another bend in the road, with the diagnosis of my daughter’s rare genetic disorder.  Then, came Epilepsy.  Processing your child’s diagnosis and learning that his or her life will be filled with challenges feels like being placed on a confusing detour from your intended path.  It throws you on a scary, unknown, and indirect course.

A line from one of my daughter’s favorite books hits this fact home, every time I read it aloud.

“Roads…bend.  Detours head where you wouldn’t expect, showing you various ways to connect.”

Thinking back on the early days of receiving our children’s diagnoses, and seeing how far we’ve come, I realize now that the journey we had originally planned was simply not the one that we were destined for.  Over the years, I have found that the experiences of other travelers, parents of children with disabilities and special needs who were similarly detoured, have helped us pave our way.  They have made our expedition a bit less lonely.  If I could reach out to parents of a newly diagnosed child, I would share advice that has assisted us in navigating our travels.

Take time to grieve.  None of this is easy.  Your whole world has been turned upside down. Cry.  Grief will likely revisit you from time to time in waves.  Allow yourself ample time to grieve.  Let yourself feel it.  You will stand stronger once it recedes.

Locate resources.  Reach out to every single resource available, without hesitation.  There are abundant programs out there to help secure supplies, therapies, equipment, and more, to help you maneuver this path.  Never feel guilty in requesting all the benefits and supports that are needed to help your child thrive.  Your child requires more.  You are not asking for too much; never let anyone make your feel that your child deserves any less.

Find your tribe.  Doctors are not going to necessarily be the experts on your child’s diagnosis.  Parents that travel the same path as you will be.  Soon, YOU will be.  Reach out and locate support groups.  Online support groups, often specific to your child’s diagnosis, are out there and they can be a godsend.

Extend yourself some grace.  Do not be too hard on yourself.  This job is exhausting and wonderful and demanding, all at once.  It can be mentally and physically draining.  Most people can’t begin to grasp the depth of that.  You are giving all your best for your child; you are enough.  The love that you pour into caring for your child will be unmatched.  Remember to give yourself a break.

Become an advocate. Never be afraid to stand up and fight for your child’s rights.  Arm yourself with a wealth of information on your child’s diagnosis.  Educate others and never back down when you are challenged.  Speak up when ignorant comments are uttered in your presence.  Don’t be intimidated; be prepared to bravely go to war on every front, for the one you love so fiercely.

Share with other parents.  If you feel compelled to do so, share your story with others in your shoes.  Someday, the telling of your journey could be a ray of hope for another family.  By imparting knowledge and bestowing compassion, you can greatly help others standing at the beginning of their own detour.

My husband and I have embraced our journey.  We are not perfect parents, or by any means “special” parents.  Over time, we have simply transformed into the parents that our children need.  We stumble.  We fall.  We brush ourselves off, get right back up and begin again.  Trial and error, love, tears, hope and perseverance have been integral components of traveling this road.

We dedicate our lives to being the best versions of ourselves for our children.  To the parents of a newly diagnosed child, you will do the same.  This journey that has chosen you is not an easy one, but it will be amazing.  It is yours and it will bring out the very best in you.  Remember to slow down and take in all the beautiful and unique sights you will encounter, every step of the way.

In our family, “I love you” is not always uttered in spoken words.

For a long time, coming to terms that with that fact was difficult for me.

In my unrelenting quest to give my nonverbal child a voice, I recently stumbled upon the most interesting notion.  While watching one of several webinars on Augmentative and Alternative Communication (AAC), a concept called “love language” was discussed.  As I have painstakingly researched and evaluated many different AAC methods for my nine-year-old daughter, trying to find the one best suited for her, it never dawned on me that she already has quite an extensive vocabulary.  Although her words are not expressed verbally, she communicates with me, her Dad, and her brother through her very own unique language.  In our family, we have clear and powerful conversations without words; the four of us share a love language that we can easily interpret.

My daughter tells us so much with her expressive eyes.  She conveys excitement, happiness, and even annoyance with a simple look.  Her face is telling, and we have learned to read it for clues as to how she feels.

When I wake her in the mornings, I always brush the hair out of her face.  As I whisper, “Good morning, Love”, she grins sweetly, takes my hand, and holds it tight.  I know that must be her way of greeting me with a “Good morning, Mama.”

Sitting with her Daddy, she studies his face carefully while babbling various sounds with inflection. The only discernible utterance is “Hey DaDa”, which she will lovingly repeat to him, over and over.  She always reaches up and gently touches his face with her little hand.  I never grow tired of witnessing that beautiful display of love.

There are many other ways she “tells” us, besides using her AAC app or picture board.

Climbing onto the sofa and tapping the front cover of a book lets me know that she’s ready for me to read to her.

Playfully drumming on her iPad while looking at her brother, she knows he will stop whatever he is doing, time and time again, to press play for her next episode of “Sarah and Duck.”

Deliberately shaking her head for “NO!” speaks volumes.

Crawling over to look out the glass door, knocking on it steadily, she exclaims that it’s time to go outside…NOW!

Applauding when we tell her “Good job” proclaims that she is super proud of herself.

Crawling over to me and grabbing both of my hands lets me know that she’s ready to play.  She’ll instinctively bring my hands together in a clapping motion.  She loves to clap and enjoys having someone to clap along with her.  She watches my hands attentively, to ensure that I perform in the manner that she prefers.  If my clap routine varies one bit, she will emphatically take my hands and “show me” how to do it correctly!

We will fervently continue our AAC journey.  Identifying the best means of effective communication for my daughter is a crucial goal.  Likely, it will be a combination of multiple AAC methods.  In the meantime, I will appreciate the love language that she is already fluent in.  “I love you” is not a phrase that must fall upon our ears to be loudly heard.  Through nonverbal gestures, it can be felt in the most magical ways.