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Journal Entry - January 23, 2013

Journal Entry - January 23, 2013

“After being at an appointment with J for over two hours, I am so grateful for a healthy child. Alexander is so happy and healthy, I am beyond blessed! And when things get tough I always have to think of how different/worse it could be.”

This is an actual journal entry 3 months before our middle son was born. I came across my old gratitude journal as I was cleaning out my bedside table. I half grinned and shook my head as I read my scratchy handwriting on the striped paper.

You see, J is a young boy I cared for who is severely developmentally delayed.

He can’t walk or talk but he can light up a room. His laugh is incredibly contagious and caring for him filled my heart with so much joy. He also has a seizure disorder, and I’m guessing we were at a specialist visit on January 23, 2013.

If I only knew.

If I only knew that our lives were about to be different.

If I only knew that things were about to get really tough.

Not just a little tough, a lot tough.

If I only knew that a few months after I penned that short entry our son would be born with a rare genetic condition filled with therapy appointments, specialists visits, sleepless nights, and tremendous worry.

But I didn’t know.

I had no idea that the “worse/different” I thought of when I wrote that entry was about to become mine. Our life was about to change.

After I read that I wondered what I would have said to myself on January 23 if I knew. What if I knew that Christopher would be born medically complex and severely delayed? What if I could have told myself that he may never talk? What if I could have told myself he may never walk?

What if I would have whispered that when he gets sick your anxiety will be paralyzing and you won’t stop worrying?

What if I would have told myself that the fear of losing him will never go away?

I’m not sure if I would have sat in the corner and cried or if I would have spread my arms wide open in an effort to say ​bring it

Because what if I would have also told myself that yes, the worst days will be days that many parents can’t even fathom. And yes, there will be days when the tears won’t stop falling because life simply isn’t fair. But I would have told myself that the days with triumph and joy are days most parents can’t even fathom.

And there will be days where the tears will fall for reasons other than sadness. The tears of joy will fall over the most seemingly miniscule things and the only people who will understand are those who live a life like yours.

A different life.

If I could have only told myself that the life you think could be worse/different will only make you better. And the child you will have will teach the most meaningful life lessons not only to you but to everyone around him. I would have told myself on January 23, 2013 that my life was about to change.

Big time. I would have told myself that there will be grief. But there will also be joy in journey that I wouldn’t trade it for the world because if I did then he wouldn’t be mine. And as much as this different life can be a struggle, Christopher is mine, and I would never want him to be anyone else’s.

And you know what I find the most ironic in that journal entry is that I truly thought I knew what gratitude was.

If I only knew.

Firefly Blog

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

Melissa Schlemmer

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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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