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How I'm Learning to Be Me Aside From Being a Parent to a Child With a Rare Disease


It’s a big year! My little man turned 10 in January and I hit the 40-year milestone in June! However, this isn’t supposed to be about my son.

I’m planning on a focus of me, myself, and I. But, like always, I must first discuss my Jackson. If you have a child with a rare disease, you get it. You just get it.

Jack is 10! How can that be? He’s double digits, entering fifth grade, and looking and acting more like a big kid than the tiny structure that consumes his little 3-feett 9-inches body.

Many say it gets easier as your rare disease child gets older. As diagnosis get finalized and medications are regulated, everything does set into place… in a way.

It’s been a long 10 years of constant attention towards Jack. I’ve lost count of the appointments, illnesses and hospitalizations, surgeries, numerous phone calls and frequent arguments we’ve had over the phone and in person. Advocating isn’t always pretty.

I spent every day and night holding him, watching and listening. My job was: nurse; specialist in all things Jack; advocate. I was parent and wife second. I didn’t really have a choice.

I used to carry two large binders with medical records before everything went digital. It was just easier — though inconvenient — to bring everything along just in case something was in question at one of many appointment. Thank goodness for digital medical records and shared systems. Nowadays, I only keep lists of diagnosis, medications, specialists, and the likes on my phone. I appreciate the doctors that allow me to text or email them this information straight from triage.

I’ve spent 10 years caring for Jack:

  • Weighing him twice a week on a baby scale at home to monitor his severe failure to thrive and hoping for a gain.
  • Measuring formula after formula, trial after trial, adding calorie supplements, and calculating kilocalories in attempts to find the right mixture, never to find a “good fit.”
  • Sitting by his side in a hospital room, all day and night, singing to him, patting his bottom, trying to give him comfort.
  • Carefully measuring and logging medications.
  • Setting alarms to administer overnight, when needed.
  • Weighing and logging diapers. Hoping that his body will continue to work on its own and never actually need surgical intervention.
  • Watching endlessly on the monitor overnight, concerns with every kick, hit, moan or cry. There are too many variables to know what it might be.

As Jack has aged, many of these tasks have been erased. Today we deal more with behaviors and only a handful of constant medical ailments. I still have many high-alert days, but nothing like the past.

Without the constant worry of Jack’s health diminishing and maturity on the rise, I’m getting to focus on myself. But who am I?

We’re halfway through the year and I’ve learned a lot. Since I’m finally focusing on me, I’ve decided it’s, “The Year of Becky,” and forced attention towards myself first, then my other children, my spouse and friends. Is that an appropriate order? It is for me.

I know I need to focus on me. I’m learning my likes and dislikes, wants, needs, and how to be me and only me. No longer will I allow others to mold me. I’m doing what I’ve longed to do. I’m happy. I’m me!

I know that children are impressionable and my other two children have suffered from a lack of my “being there.” It’s time for love. We talk. We play. We spend time together.

My spouse? My husband has worked extremely hard to keep our household functioning, fill the void for our children, and stand by to support me when he can. It’s time to focus on us. I need to give him the attention he deserves.

Friends? Do virtual friends count? I have a couple of friends but no one I actually get to spend quality time with. I’m finally getting to be a mom and sit with other parents and chat. It’s a start. I need more. I deserve more. That’s another goal for “The Year of Becky.”

What can you do if it’s time to have your own year?

  • Get that haircut.
  • Wear or don’t wear that makeup.
  • Wear those shoes or that style you’ve been longing for.
  • Say what’s on your mind.
  • Stand up for yourself for a change.
  • Just be you and embrace every little aspect of you and only you.

Getty image by Rassco