I am a Rare Mom!

I love that term, because it covers so many different parts of my life. I’m unique, an individual, a working mom, and I’m also a mother who wrestles daily with several rare and at times life threatening chronic diseases. (You can begin to watch all of that here in my PW video series!)

My favorite titles are Jeffrey’s wife and mother to our two children. My “beauties”, as I call them, are Ian 12 and Norah 10. Our two amazing kids, don’t know a time when mom wasn’t rare…

My health has been a serious thing their entire lives. They have watched their mom rushed to the ER, carry an oxygen tank, and in bed for months. We have shared times when I was certainly more stable and had almost as much energy as they do! Each of these moments and memories are all part of my journey as their mother. Perhaps that is what makes Mother’s Day a great day for reflection…

I can scan back through years of photos, that show me in various states of health.  Each one is a milestone, illustrating the most important gift– I’m still here fighting and living for my family.

This year marks a special milestone too; for the first time since having children, I have returned to the workforce. My pre-children work life included busy PR/ Ad agency work. Agency work is fast paced, adrenaline pumping, occasional long hours and so much fun. I loved that work. The reality today is that my body couldn’t sustain just one hour in my old work life. If I was going to work outside of the home and remain stable it needed to be affirming, fulfilling and not as taxing!

Luckily for me, I found such a position. I began working 30 hrs a week for the Old Mission, St. Barbara Parish in you guessed it Santa Barbara, California. The job is perfect for me. I work with families and their children. While this work isn’t for everyone; it works for me.  This job is an accomplishment that my doctors and I only dared to dream a few short years ago. My cocktail of medicines and warmer living conditions in California have brought a welcome change to my health.

Jeffrey (my incredible husband) and I have spent a great deal of time discussing what working would mean for our family. I spent the Fall and early Winter volunteering in various organizations to see what and where I would look for a job. And to see if my body could handle it! I needed to know in my heart if it would work before I applied for a position. Balance is the most important skill for a mom and even more when you are a #RareMom.

Everyday we make choices, but for a Rare Mom, if we make the wrong choice and expend too much energy, then we can be in bed for a week.

That’s why I’m completely honest with my workmates and employer about my health. I volunteered and had a track record, and they knew my work ethic. I also was brutally honest and shared my work as a writer for both PW and my personal blog PilgrimageGal with them. They need to know me, all of me.

Let me be clear, If I have worked a full day at the office, dinner may come in take-out from our favorite cafe. My days off are almost always, no makeup and pjs. I couldn’t survive without Amazon Prime. My husband is my partner in every sense. If I work too hard and it drives me into a flare; it’s Jeff who is forced to drop everything and pick up my slack. So when he lovingly says, ”Go to bed.” I do. We have 23 years of marriage to remind us of our shared commitment. He always sees the big picture before I can.

But even when I’m not my best, I always have room in my bed for a movie and snuggle. My Beauties all clean from showers and in cozy pj’s will climb up, nuzzle in and take over our king size bed! Just last weekend, we stayed up a wee too late on Sunday watching a movie that was too good to stop. Choice, that’s what being a Rare Mom has taught me. I can’t do half of what my girlfriends can do in a day. I have long since let go of perfection. I have perfection pockets, places where I choose to invest my energy. I scan my week and choose what is most important to our family. Sometimes that’s store bought treats, sometimes we make them. I’m never afraid to call an audible and adjust on the fly.

Life’s about choosing which moments are best for your family. The importance of those choices and moments are magnified for us Rare Moms.

When I take stock every year on Mother’s Day, I give thanks for being a #RareMom.

I’m more present now than ever; I celebrate milestones, I love each and every success, I tolerate the bad days… Knowing I’m one day closer to being back where I want to be. And through it all, I look around me and see the amazing “beauties” that are growing up with the Rare Mom, who couldn’t be more proud to be here in any form.

If you share Kathryn’s sentiments about being a #RareMom, post them today along with your favorite pictures @PatientWorthy!