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.

❤️💙

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Okay Together

“You’re my best friend, Mommy.”

Yes, Baby.

There’s so much emotion attached to his statement. If I were the mother of a typical 3 year old, I wonder if I’d feel differently about his words. The fact is, I am his best friend (his mother, his OT, PT, speech therapist, his nurse, his advocate) and forever his biggest fan.

But as much as this melts my heart to know my sweet boy sees me this way, it also stings. It stings because I know it’s true. He doesn’t have friends in the traditional sense and I can’t help but wonder if he ever will.

I know what you’re thinking – he’s THREE! Stop overthinking!

We are early in our journey and there’s so much progress to be made. Yet still…my heart cannot help but ache and long for him to know true acceptance from someone other than his mother. I pray this every day as I drop him at preschool…

“Please, Lord. Give him a friend. Give him comfort and strength. Watch over him.”

There is so much we don’t know – can’t know – until it all unfolds. That’s hard for me. Really hard. I want to know if he’ll ever be able to comfortably associate with peers. I want to know if he will ever initiate instead of always needing an adult to prompt.

Some of the fiercest battles we fight as special needs parents are the ones inside our own hearts. We battle between fact and what we hope and pray will be. We do our best to stay strong and positive and sometimes…sometimes it just becomes too much. In spite of our best efforts, we crumble. Under all the pressures and demands, necessary and self-imposed, we succumb to the battle, knees falling to the rocky ground, and we plead with all that is in us to just make it all okay.

“Please, Lord, let it all, always be okay.”

And when we finally pick ourselves up, brushing off the fear, anxiety, and yes, sometimes anger, we see that our knees bear the scars of having fallen countless times before and yet still, we rise. We rise to do it all again and again because these precious souls have been entrusted to our care. And for as many times as we fall and hurt, they hurt just as much and more – and still, THEY rise.

Our babies fight no matter what. They don’t give up, they don’t complain, they march onward – and so must we.

I would battle thousands of lifetimes to be the mother of the son I have right now. He was meant to be mine, of this I am certain. Our souls have been, and always will be, eternally intertwined.

So yes, Baby. I am your best friend. Today, tomorrow, through every sting and every scar. Together, it will be okay. Together we are okay.