Being a parent or caregiver of a child with disabilities, you will encounter trying situations that will push you to your limit. It’s simply inevitable. Moments will arise in which you’ll feel the blood in your veins run hot while heavy stress consumes you. There will be times when you literally just want to scream out loud.

When we find ourselves here, we must rise above and remind ourselves to JUST BREATHE.

When someone utters the careless, thoughtless, cruel “R Word” in your presence…

When someone rudely stares or teases your child for being different…

When the insurance company takes you around and around on a carousel of never-ending prior authorization requests and denials, instead of helping you obtain the medical equipment your child desperately needs…

When you circle a parking lot for 20 minutes, searching for accessible parking, only to discover someone effortlessly hopping back into their vehicle, with no sign of an accessible tag or placard in sight…

As hard as it is, and before you explode, JUST BREATHE.

There will be times in which your heart aches and you can barely hold back a burning flood of tears.

When you’re sitting in an IEP meeting at your child’s school, forced to listen to the “weaknesses” and all the ways she falls short of her same aged peers…

When she is unable to communicate that she is sick or hurt…

When his anxiety takes over and you just want to “fix it” and make his life easier…

Before you lay down and surrender, JUST BREATHE.

There will more moments of pure joy and perfect love than you’ll be able to count, too.

You will experience magic and beauty in your life that most people can’t begin to imagine. Moments that will melt away all the worry and completely take your breath away.

When your child lovingly smiles at you and her eyes light up with wonder…

When you hear her most precious giggle…

When he wraps you in a tight hug, just when you need it most…

When you witness her reach a tremendous milestone that equals climbing a mountain…

Remember to pause, JUST BREATHE, and take it all in.

Painfully Aware

There is a monster that lurks in the shadows, always just one step behind.

It crouches and stalks, silently preparing to strike when you least expect it. You always know it’s there, and you do everything in your power to stay two steps ahead of it.

Epilepsy is a beast that will turn everything upside down in an instant. It is a thief of peace, and it leaves fear, heartbreak, and total chaos in its wake.

November is Epilepsy Awareness Month; families like mine are painfully aware of its existence EVERY DAY. We must remain vigilant, never letting our guard down.

When your child has a stretch of seizure freedom, it is truly something joyous to be celebrated.

With the celebration always comes cautious optimism. “How long will this season of peace last?”

We’re always aware that the monster could be right around the corner, and we can’t become complacent in our efforts to keep it at bay.

My daughter’s routine has rigid rules built in that we follow strictly.

We are aware of her many triggers, and we constantly battle to keep them under control. Meds must be administered on time. Always.

She needs plenty of sleep and hydration. We stay away from crowds and try to avoid illness as best as possible.

She is nonverbal and unable to communicate to us when something is “off” or just not right, so we take her temperature frequently.

Sometimes, there is no rhyme or reason when the stalker shows up. Painfully, we’re aware that’s just part of its nature.

Every single time Epilepsy rears its ugly head, our entire family is left reeling in its aftermath.

We’d give anything to shield her from going through it; to protect her from its wrath. It has a way of traumatizing us all, each time, and it never, ever gets easier.

We desperately try to stay calm as we pray for her to break free from its grasp. Every member of our household knows their part on the team when it happens, and we work together as a cohesive unit to help our warrior girl fight through.

We have her back in this fight, and we always will

We’ll share information with others and advocate for her in November, and in every other month of the year, too. We’re painfully aware of Epilepsy and all that it brings with it.

Aware of the toll it takes. Someday, we hope a cure will exist and the monster can be defeated. In the meantime, we trudge on and continuously watch over our shoulders.  

What “Back to School” looks like for us

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!

Superhero Siblings

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

Mastering Goals, in Her Own Time

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.

If I had one wish

“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.

We Made the Right Decision, Didn’t We?

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 Wait

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.

Thankful for Ten

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