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The life we have been given

The life we have been given

Someone recently asked me how long it took me to find a positive way of dealing with the diagnosis of our son. This is a tricky question because I know I have notoriously been a positive person my entire life.

My glass is (almost) always half full. But I will tell you that upon receiving our son’s diagnosis my cup was empty here and there, and I still have my days when my cup tends to tip over and before I know it I am in tears in my kitchen without warning.

Staying positive isn’t easy. Staying positive while caring for a medically fragile child is hard.

Keeping a “never give up” attitude day after day for years can be exhausting.

But I will search for hope in the darkness rather than sit there with my head in my hands.

I will lend a hand and lift up those around me even when I feel depleted. Because it’s my choice.

I have a choice, we all do. This is the life we’ve been given. The cards we’ve been dealt.

“You don’t have the right to the cards you believe you should have been dealt. You have an obligation to play the hell out of the ones you’re holding.” Cheryl Strayed

Our son was born with congenital disorder of glycosylation; a rare, life-threatening disorder.

He was not the child we planned. We had to let go of the person we envisioned him to be and the dreams we had for him.

Once we did that, we could celebrate the child we do have.

This is the hand we were dealt, and from day one, I have made a promise to him that I will play the hell out of this hand. I will do everything in my power to help him reach his full potential, whatever that may be.

And we will shower him with love and attention, practicing gratitude for each and every day we have the privilege of waking up with his smile. We will celebrate the triumphs, no matter how small.

We will hope. We will try it all. And we will love beyond measure.

Oh how I wish there was a timeline.

I wish I could tell newly diagnosed parents that in a few days you’ll feel better, or in months you’ll finally come to terms with this new life of yours.

And just maybe, in years you won’t envision all the things he “should” be doing. Or at the 100th specialist appointment you’ll drive home without tears stinging your cheeks.

But there isn’t a timeline, because it’s in you, and your timeline may look different than mine. And that’s ok.

We can be bitter, or we can be better.

Try to replace one negative thought with two positive ones.

I know that sometimes searching for that tiny glimmer of hope takes longer than sitting with your head in your hands.

But keep searching. We can choose joy or we can choose misery.

And one thing I know for certain, a joy filled life is certainly better than one filled with misery.

It’s in you to make those choices. Choose wisely.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Melissa Schlemmer

Meet Our Blogger

Currently I am trying to juggle life with an infant, 7 year old, and a nearly 5 year old with special needs. Life is all kinds of crazy, but we are loving it all. I’m passionate about advocating for our son and sharing our story so other parents realize they aren’t alone in this.

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