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The Contract We Sign

The Contract We Sign

My son recently had a procedure at the hospital where we needed to be there for an extended amount of time during the day.

We were laughing and chatting it up with his nurse and then the subject of having children came up.

The nurse said she knew she wanted kids but then she gestured to the hospital and said: “but when you have kids, you sign up for this.”

As a nurse, I’m positive she has cared for extremely sick children and she likely has seen children who never get the opportunity to return home. She has seen it all.

I kept thinking about our conversation after we left the hospital, and she’s right. You do. You don’t realize it but you sign up for all of it.

You don’t just sign on for the sleepless nights during the infant years.

You don’t just sign on for wellness visits and milestones met.

You don’t just sign on for the adorable baby babble turning into first words of mama and dada.

You don’t just sign the dotted line for “typical.”

That’s not how it works.

There is an unwritten contract that you don’t even realize you signed the second you have your child. Because you don’t get to choose, you don’t get to predict and plan their life.

There isn’t a multiple choice contract where you pick oral eater or tube fed. Choose to sleep through the night at 6 months or insomnia.

Milestones met right on schedule, delayed, or never met. No choices. We sign up for it all.

We don’t get to decide. But we do have an obligation to our children to step up, show up, and never give up - no matter who they are.

When we had our second son, I had no idea what was ahead of me

I was blissfully unaware that I signed on for “all of it.” He was born with a rare genetic disorder, congenital disorder of glycosylation (PMM2 CDG).

He is almost 6 years old and still has many milestones he has never met. His disorder affects him from head to toe, and he truly will never be “out of the woods” when it comes to the surprises and curveballs we are thrown.

I signed up for all of it.

I signed up to wheelchairs, gait trainers, and standing frames.

I signed on for severe developmental delay.

I signed up for therapy appointments year after year.

I signed on for specialist visits and care management.

I signed up for procedures, surgeries, and hospital stays.

I signed on for a life of advocacy and spreading awareness.

I also signed up for perspective, authentic joy, and unconditional love.

We all do. Every one of us, all of us parents, unknowingly sign up for all of it.

Our son is who he is because of “all of it.” Without “all of it,” there is no him. Of course, I would give anything to take his pain and struggles away.

I would also love to hear him say I love you and countless other things.

I can wish and hope for things for him but I can also love him fiercely for who he is.

And if I knew ahead of time, I wouldn’t hesitate to sign on the dotted line.

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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