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.