Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

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

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.

View Melissa’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 6 months on

Purchases on $99+

US Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of $99+:

No Interest if paid in full in 6 months on purchases of $99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 6 month period.
  • No interest will be charged on the purchase if you pay it off in full within 6 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00.
  • Individual items that are less than $99 qualify for special financing when combined for a total of $99 or more in a single transaction.
  • Multiple separate transactions of less than $99 per transaction cannot be combined to meet the minimum purchase amount.

Purchases of $98.99 or less:

Buy now and pay over time with PayPal Credit when you spend $98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • If approved, we start you off with a minimum credit line of at least $250. See FAQs for more info.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00. See Terms and Conditions tab for more info.
  • If you miss a payment your late fee could be up to $38, even less if it's your first time. See FAQs for more info.

Please wait...