Special Needs Parent: It’s Okay To Not Be Okay

Motherhood is a balance of self care and sacrifice and I’m coming clean right now to tell you, I have not done my part in the self care department. It hasn’t been for lack of trying…at least it didn’t start that way…

Parents of children with disabilities will never, ever tell you they are exhausted. We will never admit to you that we are so emotionally and mentally drained that there are days we simply do not know how we are going to make it. Some days there are moments we can’t even sit without tears falling down our cheeks. We will never admit to you that there are days we wish it didn’t have to be a fight or be this hard. You will tell us over and over we are strong and inside, we will be screaming that this fight is slowly killing us…

I believe this fight is slowly killing me.

That’s the truth.

I said it.

For nearly 5 years I’ve told myself that I’m okay, that this life is okay; diagnosis after diagnosis, surgery after surgery, procedure after procedure. And with all of my being, I truly believed it. There was power and safety in those words…I realize now, there is also great opportunity for self-destruction.

This weekend in some very apparent and scary ways, my body let me know that I cannot continue down this path in the same way…

I came face to face with not being okay.

I’m seeing it’s possible to be brave and strong and broken all at once. And sometimes, being broken is all we can be, all we can feel…sometimes sitting in the dark is all we can do. And if there’s one thing I know well, it’s that the darkness will become your tool to grow.

Our life is not easy, yet as mothers, parents and caregivers to our most precious and vulnerable gifts, it is essential we practice self love and care. And when we fall short (because we will), we must also grant ourselves grace.

Our families need us, but even more than that, we must first need ourselves.

Heartiversary

Four years ago today, as snow began to heavily blanket the earth in the early morning hours, we prepared for the unpreparable.

I remember my head and heart in constant battle as we learned the medical team was having difficulty getting to the hospital due to road conditions. If they didn’t arrive and surgery was postponed I’d get to hold on to my baby just a little longer…I wouldn’t have to face this.

My head knew he needed surgery to survive but my heart and arms just wouldn’t let him go. The halls were silent that morning but for my muffled cries. I was numb as Scott and I wheeled him to the OR doors. I fought the fearful thoughts creeping in my mind, as this walk eerily felt like a funeral procession…and I was so afraid it was.

I was cold and hollow and at the same time, full of more love and warmth than I’ve ever known.

Physically ill with fear, my stomach was somersaulting in my throat, then plummeting to my feet and back up again. In one minute I was preparing myself to say a forever goodbye and in the next, I knew with all that was in me, that he would be okay. I was like a ball with all the pain of being slammed to the ground and then tossed high up to the sky in exhilarating joy. Up and down, up and down, for all the hours of his surgery until I could lay my burning and bloodshot eyes on him once again.

(1/3/14 post op)

I’ve never spoken of the fear I had in this very moment. It’s something I try not to think about too much. It wasn’t for lack of faith in our medical team, it was the knowledge that our children are never really ours…they belong to God…and He calls them home in His time. His time – not mine. I was not in control.

Would Luke’s purpose have been served in his one month and 10 days on this earth? I prayed with all that I was, that it wasn’t. I prayed for a long, healthy, happy life. Together.

Our walk down winding and sterile halls that morning was a walk to new life. It was a walk to rebirth. The door to Luke’s heart was opened that morning and he was gifted life for the second time. Life I could not ever give him.

(Happy Heartiversary cake)

There are times on this earth when we can prepare…and there are times when no amount of preparation will ever be enough. Times we are in control and times when all control must be surrendered. In those hours all we can do is hold on to each other, to Love. Hold on to faith. Hold on to the Peace that there is so much more than this life…so much more.

As mom to a heart warrior, I honor life with that knowledge, living every day in love, faith and so much thankfulness.

Happy Heartiversary, my sweetest Luke.

❤️💙

The Eve of 4

His last night as a three year old.

To say I’m emotional this year is a massive understatement. Every year around the month of October, the strong emotions start creeping in and…Thanksgiving…man, Thanksgiving and Christmas and the New Year will never be felt in the same way again. Every year, every birthday, I wonder what I will feel, how I will reflect on the past year, and every year has been different.

There’s been a lump in my throat this entire week as I remember how our delivery journey started; we almost lost each other. And that memory I’m learning, is something that no amount of time can ever erase. It is relived throughout the year in very small moments, catching me off guard at unexpected times.

But not today. I knew this day was coming and yet still, I could not prepare myself. I remember the fear, the uncertainty, the crazy mad amount of love I had for this unborn child who needed teams of doctors and the God given gift of a heart surgeons hands, in order to survive.

On this eve four years ago, I began pleading to God –

“Please Lord, keep him safe. Please Lord, let me live to see him, to hold him, to kiss him…even if just once. Take me if you must, but please, let him live.”

It’s long past his bedtime as I sit here on this couch…my most precious joy deep in slumber upon my lap. His position now shifted, his head resting at my heart, I cannot bear to move. I study every feature, lightly brush his soft brows, his small hand that was once so busy at play today, now rests on my chest.

And I raise my own hands in thanks to God…He is safe…I am here…holding him, kissing him. Rest in sweetest slumber, my precious baby boy.

The Truth Of How To Be Strong

As I scoured the preschool floor for my missing earring, I heard her voice…”You are so amazing. I don’t know how you do it every day. You’re so strong. Like a supermom.”


Preschool drop off has never really been easy and lately, we are truly struggling – in many areas and ways. This particular instance involved quite a bit of physical and mental struggle and it took a lot reassurance, use of our picture schedule and storytelling. It took me sitting on the floor, face to face and heart to heart as I squeezed him so tightly I could feel it beating, my lips touching his soft little ear as I whispered our mantra of sorts, “You’re safe. You will have the best day ever. Mommy will come back after nap and snack. I always come back. I love you.”

As I stood up, brushing from my sweaty face, pieces of hair that had been yanked from the messy bun I’d slept in the night before, our eyes met. She’d seen me drop him off countless times. She’s seen us on the verge of meltdowns, the panic in his eyes when he realized his coat hook and cubby had moved location.

We never really spoke before this day, other than the customary etiquette that often ensues as parents go about the weekday ritual of delivering their children to daycare and preschool before heading to work. And largely, that’s because I’m usually always on the verge of tears as I leave the building. I want to say more, but I can’t. I need to hold it together until the car…God just let me make it to the damn car in time.

So many times, mothers of children with special needs are praised for their strength, perseverance and determination in raising their children. While it’s great being reminded that you’re a good parent, there is something inherently uncomfortable when you are told you are strong for raising your child that has special needs. When people share these sentiments, I know they mean no harm. If anyone reading has said this to me – or a parent raising a child with special needs – I understand it all comes from a good place. However, deep within me there is such an unsettled feeling that while the world around me sees me as this fearless, caped supermom, I know that on the inside I am insecure, scared, and every day, so completely overwhelmed by the road I am on.

When someone tells me I’m strong, there is a part of me that wants to scream at the top of my lungs how utterly weak and defeated I feel. I often nod my head, take the compliment, and know most parents in my situation likely feel that their strength is NOT an option. When you have a child that is medically fragile, autistic, developmentally delayed, or intellectually disabled, the only person that can advocate and fight for that child is the parent. There are only two choices (1) you take on the fight (2) you abandon your child. Most parents could never conceive of leaving their child, and therefore the only choice they have is to put on their big kid pants and plough forward, full steam – just like Thomas the tank engine. 

That particular morning at drop-off, and every time I hear it, the most difficult part of being told that I’m strong is that I feel like it means I’m not allowed to be weak or have moments where I don’t feel confident or happy. It feels like a lie. Most days it feels like I have to put on a brave face, but in reality, all I want to do is hide in my closet and cry on the floor – and I have. I never feel like I can be scared, frustrated, overwhelmed or sad because I have to be strong for my child. Over the past few months, I’ve come to the slow realization that I don’t have to be strong all the time. It’s getting too hard…

To all the moms in this special needs community, you certainly don’t need it, but you have permission to have a bad day…to cry…to scream…and to feel hopeless – and not feel guilty for any of it. We cannot always hold it all together. If we don’t stop to feel our emotions, we will only find ways to destroy ourselves.

The world sees us as superheroes for our children, and I imagine they believe we are cloaked in our vibrant capes as we dash to various appointments. But do you want to know the truth? The truth is that no single person is capable of being a superhero all the time. It’s natural to feel weak, to feel sad, and to grieve the life you thought you’d have…and the one you are now living. It doesn’t mean you are ungrateful or love your child any less.

The next time someone tells you how strong you are and how much they admire the color of your cape and your ability to be supermom, I challenge you to be vulnerable and messy with the people in your life. Tell them you don’t always feel strong. Tell them there are days you feel like it’s absolutely impossible to deal with any more stress…and that you just need someone to let you not be strong…for just a minute.

When I have forced myself to get honest with my friends and family, I have found that this is where I find my real strength. I feel their support as they listen to all my frustrations and sadness. We can’t keep it all in, all the time.

I encourage you to NOT be strong every single day. I’m working on it, and you should too. Your sanity depends on your ability to process all these feelings. Once you’ve had a chance to feel weak, it is only then, you will know the truth of how to be strong.

First-Then

“First we rake leaves, then hot chocolate.” This is the phrase I repeat all day, every day – First____, then____.

When you have a kiddo who struggles to stay on task or has anxiety or disability, first-then schedules become your new best friend. It can be written, spoken, or done with pictures and/or objects. Sometimes we use it for behavior support, such as when we think (or know) that an individual doesn’t want to do something we want (or need) them to do. In that case, we present the thing we want them to do in the “first” and the thing they want to do in the “then.”

The idea is to show them a preferred activity or a possible reinforcer to motivate them to complete the thing they don’t want to do. We use them proactively (before a problem) and when an individual refuses to complete a task.

Raking leaves WAS the original preferred activity this morning however, I spoke too soon regarding the impending deliciousness of hot chocolate and well, game over folks. Whenever there’s mention of chocolate this kid is ALL belly! And these cute espresso cups are the perfect size mug for little hands, and make him feel like a “grown-up mommy” sipping his well deserved #hotchocolate

Rescue Patrol

He fought the tears and tried to be strong, anxiously wringing his not so chubby – but still little – almost 4 year old hands, until they were red.

I searched him if only for just a glimmer of understanding…begged him to use his words, to tell me – even one word – how he felt.

And then finally, a quiver in his soft, small voice, sounding as if it carried with it the death weight caused by all the archers tools, it came…

”shaky…it makes my inside…shaky…Mommy”. 

There’s no on/off switch when it comes to parenting. You’re 100% in, or you’re not. Some days that means being the rescue patrol to your little darling when therapies don’t go as planned. 

Having any time to myself is an extreme rarity, as I’m sure many moms can relate. Today was supposed to be that day for me…to relax, decorate, zone out while cooking a delicious meal. Those things won’t happen. Not today.

And yet it’s okay.

Because some days – actually, most days – we don’t even get to scratch the surface of what we had planned.

Some days life isn’t okay.

And in those uncertain moments of heartbreak and suffering, we must seek to understand. We must do our best to accept and sit with the discomfort of all that is, knowing that it’s okay for every soul, to not be okay sometimes.

And so we sit, silent and shaking, holding onto each other, to love.

Holding fast to the magnificent power that comes when parenting through the pain. 

Roots of Struggle

Is it possible to love someone too much? If so, then I love him too much. I love him and love ON him too much.
And once I learned of his diagnosis (diagnosES, I should say), I loved him all the more. I know it’s probably not something you should do–or should you?–love a child a little more once you hear that they will likely have medical issues and struggles throughout their life.

But I do.

I know I take more moments to pause and look at him – really look at him – and take him in. I battle myself constantly with wanting to baby him more than I should (is that not a given? Would I not have done this even so?).

But I can’t. 

I can’t baby him the way I might have chosen. Babying him because of a left hand that doesn’t cooperate, or constantly reminding him of the order and fashion in which to brush his teeth, every. single. day and night, does not serve him long term. Allowing him to constantly stay within the safe and comfortable confines of his home to carry out repetitive tasks and rituals, does not serve him. Allowing him to self isolate, is not an option. 

For almost 4, he’s sharp, witty and has a memory like an elephant despite needing guidance in motor planning. His recent and new found imagination is something to stop you in your tracks. It’s a guarantee he will hear and spot a speck of an airplane miles and miles in the sky, long before you EVER do. 

He’s sensitive. 

His mind and body interpret sensations much differently than you and I. Warm water to us, is hot to him, and can cause him to scream in agony. Not only the temperature, the actual feel of the water rippling and rolling along his little frame, is sometimes enough to send him over the edge. Combing his hair hurts tremendously. Seams on his socks, tags in his shirts, a collar that touches his neck in a not-so-right way, are constant sources of struggle. 

I wasn’t sure what this Halloween would bring, as the confines of a costume are becoming a bit too much for him. He finally decided he wanted to be a “skeleton ghost” and I breathed a huge sigh of relief – because PJs!!! No tags, comfortable seams and collar. It’s a Halloween miracle.


But face paint.

He wanted his face white and so we worked for several months to build him up to tolerating the feeling on his skin, starting first with a few swatches on his hands. He hated it. And yet we were both determined. Perhaps me a little moreso…but

He’s determined. 

I don’t let him give in to the struggle. Struggle is not an excuse to quit or to stop. Ever. Struggle is the reason to press harder, believe more, trust more. 
While I don’t like to think about it (no parent does) I won’t always be here. It weighs more heavily on parents of children with disabilities and so, I let him struggle more than I don’t. For if in doing so, his strength becomes more deeply rooted, he (nor I) will not have reason to one day fear the winds. 
Because I love him too much…

When I Called

I met God for the first time when I was six years old. I was riding in my grandmother’s car on the way to church. It was a warm and humid summer morning, windows down, the smell of farm fresh air blowing through the old sedan, my legs sticking to the vinyl seat, and unruly pieces of messy ponytail tickling my nose as the winds blew. And we met.
I met God again years later when I was twenty-two, standing in the cold autumn rain. Thick, heavy gray clouds blanketed the sky, as I stared at a white plaster house that was never a home, a piece of me forever gone, forever longed for, yet never mine to have had. And we met. Kind of the same way you meet a stranger in line at a coffee shop. Except that He wasn’t a stranger. He was someone I had known my whole life.
I met Samina for the first time when I was thirty-eight years old. It was a beautifully gorgeous day in August. And we met. Not in the way I would have wanted, because it meant my son would have a kidney defect, and she would become his ever vigilant doctor. Yet still, it felt kind of the same way you meet one of your oldest friends from grade school. Except that she wasn’t really an old friend. She was someone I had only just met.

My relationship with God can be complicated at times. Not because it actually is…but rather, because I’m a part of it, and in turn, complexity ensues. I still feel very immature in my faith, and as a result, I often find myself fighting with God. I still want control. I still want answers. I still want reassurance that everything will be okay. But He is patient with me and remains by my side even when I don’t make it very easy to love me. I can’t see Him…but I know that He is there.

My relationship with Samina is never complicated. And realistically, you would think that it should be. We live a distance from each other. We are busy with family and work and seldom have moments to keep in touch. And yet we do. Over time and distance, we are building something. A friendship that is one of the safest places in the world to me. And while I don’t often get to see her as much as I would like…I always know that she is there.

This past year has been horribly painful for me. I’ve struggled with the clarity of friendship – to know what is real and what is illusion. I’ve been lost in the thick and deep woods of how things are, and how I would like them to be. I imagined the months would have been kinder to my soul. That I might have been kinder to my soul. 

I’ve struggled through what felt like a hurricane of my own design. Anxiety. Worry. Doubt. Fear. I struggled to walk away from the lies and walk towards a better truth. I had struggled with the fears that I may never get to be who God wanted me to be…that I may never get to be who God intended me to be. That I would never be enough, do enough. I had struggled with the idea that my fear may forever hold me back. I had struggled to trust…to let go…to surrender. And in essence, what this really meant…was that I had struggled with God. And it had left me feeling very far from Him at times.

It had made me wonder if He forgot about me. If He stopped hearing my prayers for understanding. If He stopped feeling my pain. This, more than anything, had been enough to rip me apart.

Just as my grandmother drove the car down that country road all those years ago, dust rising in the air, leaving the view behind me nothing more than a cloud in the distance – not unlike many of the months that had recently passed by. When I got out of the car this time – concealed circles under my eyes, a physical ache and weariness in my body, the weight of seeming defeat on my shoulders, and all the pain in my heart – it wasn’t more than a few minutes before it happened…before the sting of all the hurts I’d buried deep, would press at the surface, and tears started pooling, streaming…before the desperation tried to break loose.

And there she was – Samina. My beautiful friend who – for what totals hours now – has let me cry and share my heart’s deepest fears, deepest longings. My beautiful friend who – while puddles form at my feet – helps hold the shattered pieces of my broken heart in the palm of her hands. My beautiful friend who – speaks words of love and truth that touch my soul. My beautiful friend who – met me right where I was, in the cloud of dust and hazy darkness, loves me in all my mess – came to my rescue.

When I think of all this…all that has transpired on a journey I never wanted to take, I am reminded of a fundamental truth…a truth that I nearly let pass me by in my river of sadness. I am reminded that while our own walk with God is just that…our own…our walk through this life was never meant to be taken alone. I am reminded that when Samina embraced the floodgates of my agony…it wasn’t just Samina. It was God radiating through Samina. It was our God whispering, “See…I’m here. I hear you. I ache for you. And you’re never alone.”

Because that’s what this life is really about. Crying together. Laughing together. Living together. Reaching out to the heavens…together.

When I think upon all this, I will forever be reminded of one of the most beautifully vulnerable moments of my life. A moment when the clouds parted and the light came pouring through. A moment when I called…and He answered.

The truth…

I know some are battling the depths of love for their child against the destruction of tantrums and meltdowns, and all the while, the greatest devastation is not felt in the mind. It’s not in the scattered and broken pieces of memories that once adorned your home. It’s not the bruises and bite marks you cover. It’s in the mangling and searing pain, the constant torment that you feel in your soul. 

Because while you try everything, there comes a time…when ashamedly, you try nothing…

The weariness, the overwhelming sadness, the bone-aching tiredness…you understand that you may not be enough. And to know you are not enough…well, it’s enough to crumble your soul into finely milled dust that’s blown upon the breath of the winds of faith. 

**Our days – my days – lately, have been long and more than hard. And it’s in these times, I question all that I am as a mother…as a human being. It’s when I spend more time in tears than I do with a smile…it’s when I ask God, “Why me? Surely there is someone more capable than me…”

The road is sometimes very dimly lit…when I’m heavy from holding too much truth. So today, I open the gate…I allow the truth to exist somewhere other than inside my body.

Faith Renewed 

It’s Spring. And I’ve been caught in my own deep winter for far too long.

The leaves have long since fallen, nature unclenching her fist. And I am brought back to the resounding discomfort that often comes with letting go. The pain of watching something fall from a tightened grasp.

Winter came.

And for me, Winter stayed.

I knelt on the ground, picking up the crumbled and crisped leaf, its vibrant beauty lost from months of cold and snow and rain. And that’s when I realized it – I have been caught up in my own cold winter. Clenched fists, fighting, struggling to stay on that limb and not fall to the cold, barren ground beneath. Hanging on to the bud so tightly, I lost sight of what comes next…

Spring.

An incredible time of growth and renewal. A time when all that once was, turns into everything it can be. A time that could never exist if the trees were not willing to release everything in their due time.

Nature does not resist letting go because it’s afraid of the loss. Nature embraces letting go because it creates space for something new. Something beautiful. Nature does not endure in the name of grief – it endures in the name of possibility.

Sometimes we have to let go of the beauty we once created – a person, a place, a deeply rooted dream. We have to breathe like blowing wind, carrying remnants of seasons past, leaving the ache of absence behind.

We must believe in nature’s greatest act of surrender – trusting that after every cold winter, Spring always comes.

…And I haven’t done a great job of believing.

Trust me when I say, you don’t want to see me right now.

My eyes are tired and swollen from crying. My hair is an unruly mess. My skin is dry and cracked. I’m dehydrated and depleted from surviving on caffeine. My barista has seen more of me than my friends and my at-home coffee Ninja has been on overdrive.

Lately, I don’t even recognize myself.

All I can ever think of is my bed. Sleep. And yet it never comes. My mind racing – it’s like a penned horse, bucking and jerking for the longing of unbridled freedom and the serenity it brings. I’m stuck in the confining corral of my own mind.

I think of all I need to be, want to be, to everyone and for everyone. For myself…whoever that is these days.

I’ve spent months walking through my own personal desert as crisp and cracked as that fallen leaf, and feeling as though at any moment, I would crumble to dust, pieces of me scattered and lost forever. I’d never be whole again.

I never expected to find myself here and I’ve had a hard time finding my way out. I’m still not sure I have the right map…

The landscape was treacherous and the elements fierce. Sleepless nights, discouraging days. I was afraid, isolated, lost. I was angry. I was hurt. I’ve tripped and fallen so many times, the bruises evident for months. I’ve even broken pieces of myself along the way.

But I have not given up. Or rather, He didn’t give up…and I merely pressed forth with His strength.

Sometimes it’s hard to know who you are in the midst of what everyone else believes you to be, or NEEDS you to be.

But that’s one thing the desert is really good at – it lets the sand blow against your rough exterior until finally, you uncover what lies beneath. It forces you to sit with the really hard questions so that you can sit with the really honest answers.

Answers and honesty your heart has known and tried to bury beneath the facades of “I’m okay” “I can handle this”…I’m handling this…right…?

Because sometimes – we can’t. Sometimes our handle on life and what it’s dealt us is the very thing that breaks us…we can break by our own hands. We resist the help we desperately need. We spread ourselves too thin, too often.

We want to do it all and be it all. Not for martyrdom or accolades, but because it’s who we are – we are conquerors, we are survivors, we are lovers and healers and we want it all to be okay. And sometimes, if we are honest with ourselves, it’s not that we no longer want the dream we’d once envisioned, it’s that we don’t know how to let it go and accept the new one.

We cling to the beauty of that leaf, and when it withers away, we are so consumed by the Winter – the loss – that we fail to see the transformation taking place before us. We want to get to the other side without feeling the harshness of Winter or the hot desert as it burns and wears us away.

We push it aside. We cover our ears. We hum a tune so loud we hope it drowns all the noise; sometimes, it drowns us before we can drown it. We punish ourselves repeatedly for what we cannot control.

And then, God reminds us of his faithfulness. He restores us.

We seldom become the people that we are all on our own. We become those people through love and encouragement along the way. We become those people because of those that open their arms and hearts to us when we are finding our way in the darkness. They may not have the map, but they have the compass. They don’t let us forget that Spring will come and with it, the promise – the gift – of renewed hope and faith.