Prednisone

Oh, my Deak.

I love him...love him with my whole soul.

But, the boy is killing me.

We are entering our third week of prednisone to treat Deak's recent unexpected onset of asthma; anyone having had experience either taking or having a child take this drug understands the importance and miracles performed through it.

But, the side effects are terrible.

Deak took prednisone three different times for multiple weeks during his first year of life. This medication, blessed doctors and divine intervention kept his life here.  I didn't fully understand or recognize the effects this medication had on Deak's behavior and personality until the second round was prescribed and administered. 

It changes my boy.

All inhibitions are released and his imminent demands are painstakingly shriek-like.  He does not understand why he cannot control his mood and temper, nor can I really explain it to him. He is so, so, so hungry and will scream at the mere sight of food within edible distance. He has been cooped up inside the house with the exception of a couple of outings, because his immune system is severely suppressed due to the medication. 

He is quarantined, hungry, and bearing a mood that resembles a nine month pregnant and slightly overdue woman.

It is miserable.

My heart hurts for him. It isn't fair he has to go through this.  He has to go through so much - so.much.  I just want enough to be enough for him.

Selfishly, I've looked back over the first couple years of Deak's life, when things were really rough.  Back when breathing was a daily battle and communication consisted only of screaming. I've wondered, even aloud, "How in the hell did I survive it all?"

The pressure to predict the future, the questions of "What if?" and "What will happen next?", the onslaught of weekly therapies, the constant appointment scheduling and transporting.

Plus work and another child who needed her mama.

Really, was that person even me?

I've often promised myself that I would learn...

I would learn to not take any day of health and joy for granted with my boy.

But, I've not completely succeeded.

I do consciously try to be aware, but we've coasted this past year or so with him. We've seen physical milestones met, illnesses quickly overcome and receptive communication skills increase to such a degree, that relatively speaking, things had gotten so much easier.

And, I took it for granted.

I did.

Lesson learned.

I feel it all again; the worry, the pain, the constant prayer for patience and perseverance, the pathetic eyes gazes from passersby who see me struggling with a screaming child and feel happy my plight is not theirs.

I feel it all.

I want my Deak back.

I want to go to Disneyland in a couple of days and trust his lungs will breathe well enough to withstand the need for nebulizer treatments in the nurses lounge.  I did that last time (four years ago), and I wanted to keep this trip treatment free.

I want so badly for Deak to have fun and smile those smiles and squeal with delight.

I want as close to normal as we could get, and I want a break from this crazy reality that is our life.

That being said, I would not trade one second of screaming starving Deak, for a Deak that never made it into my life.  The comparison is not even close to fathomable.

And, therein lies my purpose.

A purpose that I whole-heartily embrace;  that through this experience raising this beautiful boy, I will get momentary glimpses of understanding as to how it will feel the day I see him running, jumping and talking in perfect form.

Just that one visual can calm the waves of anxiety-inducing thoughts and give me the strength needed to push forward.

And, I know everything will be okay.

Prednisone, Disneyland and all.