My dear autism and special needs parents

My dear autism and special needs parents:

On the days you feel your worst,

remember that you are beautiful

On the days you feel like you don’t know what you’re doing, know that you are brilliant

On the days you feel exhausted and can’t go any further, look back and see how far you’ve come

On the days you feel you can’t handle another battle,

look at your scars and be proud of the ones you’ve won

On the days you feel alone, know that you never are…

Even if you don’t think you can push through, you can – one step, one breath (one coffee, one set of eye pads) at a time💙

Sleep is so often something we don’t get as autism parents. Our kiddos can have a particularly challenging time falling or staying asleep.

For a while our challenge was the staying asleep. Now it’s BOTH falling asleep and staying asleep.

I often wonder how long it takes before the human body can’t take anymore…

I wonder how long I can function on such little sleep.

I wonder how my child can have so.much.energy. without having slept.

And then from somewhere, the strength keeps coming.

Moment by moment, breath by breath, I hold on to hope.

Hope turns the impossible into possible…and sometimes that’s all we need to get us through.

Hope for this moment, hope for this day. Hold on to hope my dear friends.

Advertisements

You are the person who gets to decide how you live your life.

No one else.

If something isn’t working—change it.

Give yourself the time and space to dream.

Quiet the noise of the voices around you.

When everyone else’s voice falls away, what do you hear?

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.

❤️💙