While my birthday will forever be bittersweet since my Mom died, I have learned that even with the emptiness I feel without her, I also feel tremendous gratitude and joy from the love and well wishes from my amazing community of friends and family that ensure I feel the magic of the day. From my son’s decorating, to a surprise socially distant visit from a dear friend, a family zoom- complete with blowing out my birthday candle on a blueberry - and countless well wishes and treats sent my way I felt so blessed to begin another year.

I was thirteen when my parents took us downtown on a Saturday night as a special treat to eat at a Persian restaurant. I had eaten there once before and was so excited to again. As we got in the car to go home after our meal-  I realized something was wrong - I felt like I had a stick in my throat - and I couldn’t swallow.  Soon it became hard to breathe. My Mom thankfully knew immediately what I was describing and instructed my Dad to drive to the ER and for me to chew a Benadryl pill to slow the reaction. It was my first ER trip from food - little did I know one of many.

I have been blessed to mostly surround myself with people who are willing to be my friend in spite of my rare chronic diseases. Most friends didn’t even know about them when we first met - or I didn’t have a diagnosis yet depending when they entered my life. While my diseases do not define me they do impact how I can interact with friends - they run menus by me before we come for dinner - not so I can eat but so I can simply breathe the smells that will come from cooking - or at the last minute they come to me when I am having hard days so we can just hang out instead of taking a grand adventure - and even in their most important life moments- when I can't travel to be with them they find ways for me to be present on face-time or zoom.

I remember summer days in my backyard growing up - hours playing in the sprinkler - making mud puddles- riding bikes with my neighborhood friends - and always coming inside when the streetlights went on.  After dinner most nights we took a family bike ride around the neighborhood and at least weekly visited Gus at our local Baskin and Robbins.

Last November for the first time in six years I boarded a plane to fly to Disney World with my family.  I had not flown, stayed in a hotel, or been among the living in years. Of course, I was prepared- seat covers on the plane- masks for me and my son (before they were the norm)- lots and lots of medication-boxes shipped ahead with supplies for us upon arrival.  I brought everything- our own sheets- towels- all of the food my son and I would eat -and I even rented an electric scooter to ensure I could physically participate even with heat and long days of walking.    

I have kept a journal from the age of 13 - I suppose in many ways this blog has become that for me now. Thanks to my deep love of Oprah the queen of gratitude- I began practicing my own gratitude early on always ending each journal entry with things I was grateful for- grounding myself in that moment.

So many times in the last seven years I have lost my normal - when my Mom died - when my mast cells took away my ability to go to a restaurant, to eat most foods, to travel, to freely go out and live life. After each loss I have found my new way-not without tears, frustration and anxiety as I try to chart my new course to whatever new version of normal awaited me but I have always found it.

As school ends this week it’s hard not to have a mix of emotions -it is certainly not how we thought the last few months of kindergarten would go and now as we look towards summer it’s hard to know how to feel.

Since quarantine began I have anticipated when life would open up. I knew this would be the hard part for me. During the last 3 months -for the first time in a decade, the world lived like me. My friends and family wore masks and gloves while out, they ordered their foods in bulk and learned what it felt like to miss out on their carefully laid plans. My colleagues suddenly realized it is possible to work from home and we all learned the power of zooming.

I was sitting laughing with my family at the end of the Memorial Day weekend when I began to feel nauseous- usually my first symptom that a big reaction will be coming. Initially I ignored this because I was doing nothing but sitting in a chair so I assumed it would go away. Five minutes later it was getting worse and my internal voice was saying -“get your meds.”

It’s hard not to start feeling hopeless right now. Summer will arrive soon and we still find ourselves in the midst of the pandemic. It feels like we are waiting for life to return to our normal but if we are honest with ourselves our reality will never be the same so waiting for it’s return is becoming particularly frustrating.

Tomorrow is my Mom's birthday- another stop on my emotional ride through May. I think often about our deep connectedness- of course as mother and daughter but also as rare disease warriors. While we both had our ups and downs with health issues for years in mysterious ways - it was not until 2013 when the ground fell out from under us.

I have written often about riding the waves of my health but in the month of May I also ride waves of grief since the passing of my Mom four years ago. Mother's Day begins the emotional ride of my ups and downs- followed days later by her Birthday and another week later the day she died. I anticipate these three weeks every year - never knowing what emotions will emerge but bracing myself for the highs and lows that I am certain to feel.

For many years now I have struggled being able to think too far into the future. Having a rare chronic disease will do that to you -your future is unknown and largely dependent on science moving research forward. Each day I walk a tight rope hoping I can maintain balance but also hoping if I do fall off my doctors will still have enough treatment options to help me back up.

Rainbows are perhaps one of the most magical things we can find in our
world- appearing literally out of darkness and rain.  Since my Mom's
passing- rainbows have found us in our hardest moments- when we least
expect them but when we need them most. On the rare day they appear it
almost feels like she has made them just for us.

As it becomes more and more apparent COVID-19 isn’t going to disappear quickly emotions are running high. Of course this makes sense, there is no real end in sight, so many lives are being destroyed-people losing their jobs and loved ones dying.  And yet, just like in my own rare disease journey, we find ourselves waiting for science to catch up.  For them to make a vaccine and figure out better treatment options so people do not continue to die because they do not know. 

On every rollercoaster I have ridden on as a rare disease patient there are lots of highs and lots of lows. The rides down are fast and so quickly progress is taken away... and the road back up feels endless. But trusting that at some point, the ride will end, is what gets you through your hardest moments.

We are right at our 3 week point. Crazy how life changes in an instant. Knock on wood we’ve remained healthy so hopefully our efforts are paying off.

Of course, the thought of being on lockdown for two months or longer is hard to truly digest.  Many times this week I have been reminded of other times in our life in the last decade…

I get asked a lot right now about how I am doing given the corona virus. Most people know me and my son live with chronic rare diseases - diseases that are complicated enough without adding a corona virus to the mix.