There was nothing more healing than seeing the wonder on our son's face as he watched the fireworks, or sharing in shrieks of laughter as I took him on his first roller coaster. These are the days of parenthood and motherhood I dreamed to one day have and in spite of rare chronic diseases and a global pandemic we finally found them.

With the world living more normally and covid numbers again on the rise the medically vulnerable community is left with little guidance on how to move forward. As someone very much in this cohort of people I am left weighing my options constantly never sure of what is worth risking and what isn’t. The world feels like a minefield -each time entering hoping that I don't return with COVID.

In the last two years I have now undergone two surgeries - one rather major, four iron infusions and two covid-19 vaccines. All of them are a huge hit to my already vulnerable system. Should I be surprised that I have used injectable benadryl more in the last three months than I have in three years? I guess not, except I am.

It has been one month since my surgery and I am well into my recovery. There have been ups and downs as expected but I am taking it all in stride as I begin to ease back into more normal life. But the last two months have felt especially hard.

It often feels like life moves in cycles. Cycles with many births and cycles with many deaths. Loss seems to be hanging in the air as seasons begin to shift.

I must accept that I can't do everything I would normally do for any family or friend in those immediate weeks after surgery and that I have to instead lean on them to help me. I know it will feel weird and uncomfortable to not be helpful at home, to depend on family and friends and my husband in ways I don't normally like to, or to fully shut out work for a few weeks.

My doctor acknowledges that medical interventions are not going to ever help me so I either live like this or take a leap of faith that I will come out healthier on the other side. And it is with that in mind that I booked the surgery for mid-February.

Over the last decade it feels like life has been a series of twists and turns that constantly remind me of how in just an instant life can change- the plans made and future dreams shift out of focus forcing me to re-imagine my tomorrows.

Invitations to attend any form of party or gathering pre-covid were always a source of immediate concern as I would think out all of the potential issues that could make me react. What were they serving? Would there be a fire or candles burning? Did I know the host well enough to ask for the menu and request that things are removed or changed? Or should I just say no to avoid any issues not wanting to feel like a burden or to ruin their plans.

Eight years ago is when my son was born but it is also when I finally was given my diagnosis and I began my very steep uphill climb to heal. As I exchanged texts with our mast cell physician on my sons Birthday we both marveled at the journey it has been for us both. And then she said to me, what she always says to me, “it takes a village” and this year her words have never felt truer.

There are so many of us who live in bodies ravaged both by our diseases and also the side effects of the treatments and medications meant to help us. And many times this means losing our pre-diagnosis physical self. And while everyone says it should not matter how we look - it does.

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.

I did not appreciate until I was elbow deep in carrot skins how much I had missed this ritual of preparing a holiday meal, no matter how much work it was. I knew I was carrying on the traditions of my Mom and Grandmother and the many generations before them. And as we lit the candles and dipped apples in honey together I again felt the power of celebrating our traditions together.

There have been other times vacations were shortened, holidays missed and plans unraveled most often due to surprising twists and turns our rare chronic diseases move us through. Despite being a planner, I have long given up pretending that I have any control over when our bodies fall apart. But what we can control is how we handle these moments as that will define the memories we carry with us.

This is our backwards slide right now with COVID-19, but what is different and most upsetting is that while we are all living this shared reality I have never seen such a divide in our communities. When did people stop feeling a sense of responsibility to each other?

As odd as it may sound, I have long stopped caring about the stares and whispers of others who see me in the scooter or even using the disability pass to avoid a line. I would gladly give up all of my health issues and just go to a theme park like a "normal healthy" person. What I am still working on is not passing judgement on myself when I do need help

Pets play a central role in the lives of all those who have them and for those in the rare disease community this is especially true. Rare diseases can be very isolating- spending so many days home and feeling unwell as the rest of the world lives freely around you but a pet provides comfort and companionship.

As school ended Friday and camp drop off photos flooded my social media feeds it is hard not to feel palpable relief that we survived the school year and after an excruciatingly hard 18 months summer camp has returned. There is nothing that makes me happier than knowing kids will finally have a summer to play freely and heal. In truth the entire world could benefit from a few weeks of camp.

I remember early in my mast cell disease diagnosis learning from fellow patients in my community that masks are the easiest way to protect us when we are going to be exposed to a trigger. After extensive research my Mom purchased them for us both and I remember putting the mask in my drawer thinking that I would never wear it. Instead I opted to run past my triggers holding my breath and shoving past anyone in my way until I could safely take a breath again. Wearing the mask exposed me. - showing the world I was in fact sick and it felt like I was giving into my diseases.

I am the most hopeful I have been in a while about my healing. It feels painfully slow most days but I am grateful that even though I am moving at my own speed my body is still able to slowly resolve these major issues. Of course, two victories does not mean I have crossed my finish line as many more hurdles are awaiting me as I work my way down my large list of things to tackle. But I feel more optimistic that a resolution may be possible and that my body will not forever be my enemy- but instead my teammate.

Tomorrow, Monday, May 17th will be my Mom’s fifth Birthday since she died. It seems impossible and yet as we know time marches forward. This year in honor of her Birthday we did a sock fundraiser to support research in mast cell diseases and I am beyond grateful for all those who chose to partake.