Our Shared Hope

Of course the thought of being on lock down 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 that we had to hit pause- I know while many have those moments for various reasons- ours always seem to be related to our chronic diseases - the 58 days in the NICU with my son -12 hours a day everyday -the weeks before and after my Mom's passing...and more recently this past November two weeks for my son's hip bleed- our second Thanksgiving in the hospital. 

In our rare disease life we have learned these stalls come and go as they please--when we spiral out of control- or when our bodies have other plans.  We are used to riding the waves -the good and bad moments- the days that we have hope and the hours that we are sure our world is ending.  We have already learned to accept that these moments will change our version of normal forever- the impact lasting far longer then the weeks and months we lived through.

And yet in this stall right now-the rest of the world is living this with us.  We are not the only ones isolated by our own reality - but experiencing this nightmare with the world.  Is it odd that this is comforting? Not in the comforting way that I am happy this is happening- this is truly what horror films are made of- but of knowing our community is in it together- our shared situations- feelings of fear and also hope.  It  feels so different when we are used to fighting our battles alone.

I'm not happy anyone is living our weird version of normal- it is not an experience I would ever wish on the world- but something in me is hopeful that at the end of this our world can live better- care more for each other and be reminded of what is real and important in our daily lives. I just pray and hope not too many lives are lost or destroyed in the process. Daily, I am reminding myself of lessons from our previous stalls-take life a day at a time- never ask when this will end (or in the NICU world-when would he go home) - do NOT google- and always stay in gratitude.   Easier said then done...

But above all else our rare disease life has taught us -no matter how hard a day - how sick or how much our disease take from us there must always be hope.

It is a lesson deeply rooted in me from coming from generations of rare disease warriors.  In an email my Mom wrote once that I still read in hard times- she writes “But we must also be hopeful. Or we, would not be able to get out of bed each morning and face what we deal with all over again. Imagine your new dreams, your better future. And get out of bed to face another day. It’s what we do. We have no other option.” 

I know today, my Mom's words ring true---indeed these days and weeks will not be easy- but we must always imagine new dreams- a better future. There is no other option. But I am grateful to be doing it together.