Two weeks ago I clicked publish on my newest blog "Yes! Yes! Yes!" which served as my own internal pep talk and reminder to keep saying "yes" when I was able to and not worry that my more outward living was negatively impacting me. I felt hopeful and more confident by the end of writing this blog that this could even be a year of saying "yes" more. Oh the irony that a mere 10 hours later the first covid positive test appeared in our home. It felt like the universe had read my blog post and said - " actually NO! NO! NO! that is indeed not the plan!"

I love that I said yes so many times this summer to sleepovers, late bedtimes and endless pool time. We kept our days just a little bit busy but with enough space for spontaneous fun. I also said yes to more plans for myself, to see friends or movies, to sit outside till late with kids playing around us.  I tried to always be mindful of slowing our pace so we had time to refill our cup. 

We made it! We made it to summer! It felt like a sprint with final performances and recitals, field trips and field days and then eventually the last day of school! Thankfully camp started the day after school ended and by the weekend we were heading to California to visit my brother and his family. As always I had hours of cooking and packing to prepare but Friday was my day and with my lists in hand I knew I could make it happen. I was not anticipating the phone call that came in at 10:30 that morning from camp with our son screaming in the background as they informed me that he cut his fingers and probably needed stitches. 

A decade ago I would have bet a million dollars that I would not be able to travel alone to California on a plane or even be on a plane again. My brother asked me repeatedly, “are you sure you can handle this?” and every time I said that I knew I could.

At my core I am happiest planning an event. All shapes and sizes and kinds but all with the goal of creating a special moment no matter the type. I suppose it was natural that I would choose non-profit event planning  as my gateway to my career and also not surprising that I am now paid to both dream up new ideas and execute huge projects. But in my personal life, event planning is an outlet to both distract myself from my own health issues and anxiety and is a way to create things to look forward too. I love nothing more than thinking about every detail of whatever next event awaits, executing those details and feeling the energy and magic when they happen.

Chronic conditions are indeed chronic and thus it makes sense that I ebb and flow in both my interest and motivation to heal further.  I have largely given up believing a cure is possible and while that may seem like a defeatist attitude I think it is just being realistic. So if my end goal is different- not completely healed and cured - how healed is enough? Is being able to maintain and live my life enough? Or does my rare disease warrior self require me to always fight?

I remember sitting next to my mom  in her ICU hospital bed on a Thursday night in late May almost 8 years ago not knowing that would be two nights before she died, something neither of us were expecting.  As we sat in the weird hospital world where time doesn't exist and days and nights are only defined by nursing shift changes, we were trying to figure out what happens next, what care she would need at home as she fully recovered and my cell phone dinged.   A text came through from my dear friend Kelly.

I start most days by reading the "story of the day" from poet Kai Skye (formerly Brian Andreas) that arrives in my inbox each morning around 5:00 am.  When my Mom was alive we would send the day's story to each other if we felt it had meaning or reminded us of someone or something.  Since her passing I have similarly shared them with friends and family when they "speak" to me but mostly I rely on them to center me each morning by reminding me of something I am probably forgetting about myself or the world. 

I was on a conference call 10 years ago and as someone asked me a question I suddenly felt my water break.  Instead of answering the question I said - "I have to go. I will explain later" and hung up.  I was working from home at the time thanks to the temporary bed rest my doctor had put me on due to pre-term labor which clearly had not been stopped.  

As our son was getting ready to walk out the door to his first day of fourth grade this week he paused and said, "wait, do I need a mask?" "Nope!" I said as he smiled widely. For the first time since March of his Kindergarten year he was walking into school without one.

It finally happened. I could feel it coming soon. I thought it would be the last week in August so my timing was off by two weeks. But when my throat started hurting and I had chills overnight last Sunday I knew the test was going to be positive. And it was. My greatest fear in the last 3.5 years had happened - I tested positive for Covid.

The last two weeks have been only the best kind of whirlwind, with a visit from my brother and sister in-law and then a visit the next weekend from my grandma, final performances and last days of schools wrapping up . Our out of town guests made these moments even more memorable and special and I have felt endless gratitude for this time together.

“You are OK.” I read the text over and over from my best friend from college. It was 1:00 am eastern time and 35 minutes earlier I woke up choking and gasping for air. “I am OK” I said to myself as my body was shaking.

Time is a constant subject in our home as our son is always worried about it running out. Sunday afternoons are particularly hard as he gets stressed as the weekend hours dwindle away. Over and over we will remind him that there is always tomorrow - everything doesn’t always have to happen in one day. The end of the weekend is really just the start of a new week. But what if there isn’t tomorrow?

I have remained motivated to push myself to keep moving on healing and that means finally facing my fears and adding food. I know it is critical to my moving forward as my current few foods are not sufficient to only eat for the rest of my life.

We were twenty minutes from landing in Los Angeles when tears began to well up in my eyes as the reality of what I had just done hit me. I had flown almost six hours across the country, a feat I was sure I would never do again in this lifetime.

Is it weird that getting myself to walk into an OR for major surgery in many ways felt arguably less scary then how I feel about boarding a 6 hour plane ride to unknown environments? I never hesitate in taking the medical risks I need to but it is still a work in progress to similarly not hesitate on taking a risk to go on a new adventure.

I have of course processed my changed life from my rare diseases many times this last decade as I have grieved my healthier self and yet there was something about reading 30-40 years that struck me as an endless amount of time.

It shouldn’t still surprise me or upset me when these encounters happen and yet it does. How can a medical practitioner so easily dismiss the chronic health issues I live with? Why will they never try to understand me better to treat me or ensure my safety?

I am never one to wish time away but right now I find myself struggling with that feeling right now. These months certainly bring a level of stress that I do not have in other times of the year and it hard not to long for Spring.