We think we know ourselves…

We think we know ourselves.

We think we know what we’re capable of as parents and spouses and humans.

We think we know the depths of our strength and our love and our courage.

We think we know all of this…until we realize that we don’t.

Until we sit in a room watching our life unfold in the most beautiful and unexpected ways.

Until we stare another person in the face and see our deepest vulnerability reflected in their eyes.

Until we cry and we breathe and we reach for each other in ways that we didn’t even know were possible.

We think we know ourselves.

Until we realize that we don’t.

Until a moment comes along…and shows us everything…

In working on self care…

I’ve always loved to read. Sitting on the porch rocker, balmy summer breeze or crisp autumn day, getting lost in a good mystery, improving my professional game, traveling the globe by virtue of turning a page, trashy romance novels while digging bare toes in warm sand, the sound of surf crashing in the distance.

The last time I read something just for me was before I was pregnant. Because let’s be real – once that baby was growing in my belly I wanted to know all the things happening in there! I read pregnancy books, books on nutrition, and then came our first diagnosis – a critical congenital heart defect.

That’s when everything – everything – changed.

From that day on, every piece of literature I read was medical. Case studies, white papers, medical websites, medical forums, medical blogs, books on human anatomy, how to heal our physical selves, and on and on and on.

I never really thought about it, never realized what was actually happening. I was (and still am) a mom on a mission! The difference today is, I now recognize how important it is to preserve my interests, the things that bring me joy.

This little Kindle is a step to my getting back on track and nurturing my soul.

I can’t say I’ll never download medical books (let’s be real here) but I CAN tell you, there’s 30 books on there already and not one is tied to a disorder, therapy, or defect. And it feels really, really good.

Grit & Grace

She makes pain look beautiful

She finds peace among the chaos

She holds the weight of the world on her shoulders and never complains

She wears a smile in situations where most would cry

So please, don’t mistake her honesty for weakness

Don’t twist her truth and tell her she’s not doing, being, trying, enough

Her vulnerability is her grit

She’s the one with angel eyes ready to raise hell for those who take her lightly

She has warrior in her blood and grace in her heart

And she can tell a lot about a person by what they choose to see in her…

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.