Round and Round We Go

The seasons do indeed go round and round and feelings of Fall have arrived. We have slowly found our new groove despite it taking longer than I expected. Routines have formed and first days are behind us and I am now looking forward to enjoying our next ride through this season.

Fall is my favorite time of year - Halloween decorations- pumpkins and apples - family Birthday parties and cool crisp weather that makes hooded sweatshirts feel just right.

As school began this year I have been ever mindful and grateful of how far we have come since last year and the torturous days of managing virtual school and work full time. No, our life is not yet perfect, but we have moved forward and that feels victorious.

Of course just as we were settled into our new routine, I had an appointment last week and found out that I will require another procedure. Smaller than last year but a medical event no less. My heart sank. It felt too soon to have something else to conquer. This year has already held one surgery, many iron infusions and a covid vaccine. The hurdles feels endless and yet again I find myself at the starting line for my next race.

I know how to prepare - the coordination of my many doctors- medical clearances and pre-medication plans. Organizing myself to educate another round of nurses and anesthesiologists to the world of my rare diseases and hoping above all else they will listen and believe me.

A surgery alone is a challenge but knowing I have to also mount my armor to advocate yet again for what I need to stay safe and alive in a hospital setting feels exhausting to face again and so soon.

But this is how life with chronic diseases work- they do not go away. Yes, there may be weeks and occasionally months that I get a reprieve but ultimately another challenge will arise. Even after over a decade of living with them it is hard to accept they will never go away. It is still hard to imagine that they will be with me for the rest of my life and that while I work hard daily to improve my health and quality of life I ultimately cannot escape them.

But I learned long ago, while I sometimes feel out of control of my body, I do have control over how I choose to live each day. My body can’t take away the joy that I know the next few weeks will hold as we lean into Fall. I know that if I take each day as it comes and do not think about all the challenges my entire life may hold I won’t feel so overwhelmed.

I delayed dealing with the news for over a week. Not quite ready to dive in but yesterday I finally did take the leap and began outreach to my physician team. Many questions remain and I know the next weeks will be filled with chasing down answers and writing up documents to prepare myself for my procedure.

But I also know my days will hold new Fall adventures, quiet and cozy moments at home and lots of gratitude for family, friends and the support I know I will feel from all those in my life as I face this next challenge. So I am reminding myself to take a deep breath and take each day or even hour at a time. And to always find the light and magic around me as I know this will carry me through whatever darkness I may face.

“Reminded again tonight that we’re completely surrounded by stars in space not matter how often we stare at the ground wondering where the magic has gone.” ~Kai Sky (formerly known as Brian Andreas)