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.