medically complex – The Osling Chronicles

I don’t want a fighter.

I don’t want a warrior.

I don’t want him to be strong.

I don’t want him to be brave.

I don’t want him to be tough.

I just want him to be little.

Despite the best of intentions, and my own FREQUENT use of these words…I don’t want my medically fragile child described as any of them.

I just want him to be little, and to enjoy that littleness.

I want him to grow up with the innocence that comes from a healthy, carefree, unrestricted childhood.

I don’t want that childhood spent inside the walls of hospitals, doctors offices, and therapies.

I don’t want that childhood spent getting tests done, blood drawn and IVs placed.

I don’t want his memory of my arms to be as restraints for testing and needles. A restraint he tries desperately to escape from.

I want him to remember the comfort and love he felt when I held him. I want him to seek out my arms to embrace him and take the pain and fears away. I want to be his safe place.

I want him to laugh and run at playgroup without fear of foods or germs that will land him in the hospital.

I want to enjoy the highs without feeling like the lows are coming with fury to knock us off course.

I want to enjoy each season as it comes without anxiously awaiting to see what the next one will bring.

Yes, I know.

He IS tough. He IS a little warrior. He IS brave. I know that I describe him as such…but I’ve come to hate these words.

Maybe it’s the week spent in and out of hospitals watching our sweet boy so sick that he couldn’t hold his head up. Watching him so drained of strength that he could no longer fight the blood draws and IVs. Maybe it’s this new perspective or maybe it’s bitterness.

But when I heard these adjectives by well meaning loved ones and nurses, I started to cringe. Each time I began to feel like I was being punched in the gut by an unseen enemy.

You see, when we saw those two lines come up on that test, when we saw blue at our gender reveal, when we heard that first cry…this was not the life we envisioned.

When we describe him as tough or a warrior or a fighter…we are feeding into letting his diagnosis define him. I’m making a vow now to change that.

Instead, I want the focus to be on just how funny, silly, bright, caring, mischievous, loving, curious, outgoing, determined, social, beautiful, talented, cautious, sweet, empathetic, strong willed, sensitive, happy, persistent, observant and absolutely perfect he is.

And if we must use those words, let it be just one, in the long list of other adjectives we use.