Additional Needs

My Whole Life Job

Posted by Melissa Schlemmer on 5th June 2020 Additional Needs, Advice & Support, Disabilities

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The other day my oldest son and I were talking about the state of the world, and I mentioned how lucky we were that his dad still had his job. I wanted to put into perspective that although this is an extremely hard season we are in, as a family, we don’t have the extra added financial stress that some people do. Then my son, at nine years old, looked at me and said, “well, you still have your whole life job.”

My whole life job.

He then went on to say “and you basically work every second of every day, until you go to sleep.” And with a smile he said “you do go to sleep, right?”

Did I mention he’s only 9?

And he’s right.

Caring for him and his brothers is a whole life job. Especially Christopher. He has a rare genetic disorder, congenital disorder of glycosylation. He is severely developmentally delayed and is nowhere near the typical development of his peers. He’s nonverbal, cannot walk, has a feeding tube, and recently has been diagnosed with a seizure disorder.

Being his caregiver is a whole life job. Caring for him has no end.

As children age, independence increases. First, they’re pushing your hands away so they can do things themselves. Then they’re asking you to leave them alone in their rooms so they can talk to their friends. Next it’s the drivers licence, college, adulthood, and starting their own families. Most children grow and become independent. Most children don’t depend on their parents for everything their entire lives.

I know that being a parent is for a lifetime, but not all parents have this “whole life job.”

Not only are we caregiving throughout the entire day but our thoughts are filled with this “job.” We are always weighing every decision with our children in mind. For us, we always worry about illness. We are hyper aware that the next illness could be the one where we walk out of the hospital without our son. The one where we lose him. So, we take his health and wellbeing into account with every single decision we make. Almost daily, we advocate, research, submit paperwork, do home therapies, and more. And this is not just for a year or two. This is a permanent position. There’s no promotions. No switching departments. We can’t resign. There is no retirement.

This is for our whole lives.

As I let it all sink in, it felt heavy. “Whole life job.” It’s beyond exhausting. And not just, ​I need a nap exhausting​. There are days when caregiving is emotionally, mentally, and physically draining. There are days I don’t want to fill another syringe or feeding bag. Or days when my wrist hurts so badly it’s hard to clamp his extension. I have days when I wish I could close my eyes for just 20 minutes on the couch. Days when it all piles up on my shoulders and I don’t know how we’ll do it another day, another week, another year.

But then I look at Christopher and smile. Because he’s here. He’s thriving and happy. When he wraps his skinny little arms around my neck and snuggles in close, I know he’s telling me how much he loves me. This “whole life job” may be one of the hardest jobs I’ve ever held. But I also know that without a doubt, the rewards are far greater than any promotion or accolade. Although, the pain of the lows may be the most unforgettable grief I’ve ever experienced. The joy we feel, and the joy he brings is higher than any high imaginable. The lessons and perspective we have been taught can’t be learned anywhere else. Life with him is incredible.

When Christopher came along he changed our lives. He has made the greatest impact on his siblings. Teaching them compassion, empathy, forgiveness, and perspective on what is really important in life. Teaching all of us what really matters.

Christopher changed me. He changed my life when he came along. My whole life.