Monday, January 21, 2019


At night I tend to relax by scrolling mindlessly through facebook.  I do not understand why I have always been a magnet for seeing what feels like 50% of my feed being awareness/prayer warrior pages for children, yet I find it impossible to escape it.  Prior to Sonzee, I was hit hard in particular by three children who ended up passing away.  After Sonzee's diagnosis, I had to start to separate our reality from others, because it was honestly way too much to carry on my shoulders.  It is not that I care any less about the children being shared, but my heart and mind understand the situations in an entirely different manner now, and the words "I cannot imagine" have turned into "I get it" or "I soon will".  Even when the diagnoses do not align perfectly, the situations faced living with a child who has a life-limiting or terminal diagnosis overlap in some way, shape, or form.  It brings the feeling of suffocation to an entirely different level.

Last night two different posts popped up on my screen, back to back, neither giving me a chance to catch my breath.  Two little babies lost their battles with their respective medical complications.  Two families shattered into pieces.  The specifics of the situations different, the outcome the same.  My heart is left broken for them, and I do not have any first-hand experience with this yet.  No one goes into parenting volunteering for the position either, I wish I knew how those who are gifted the fate were chosen.  I wish (I am sure like anyone else) I knew what I could do to avoid it.  Rationally I know there is absolutely nothing, and I tell myself "it can happen to anyone", but we all know the odds, in this case, are more so in our favor.

So many stories I followed involved rare diagnoses, ironic that we are living out our own journey of rare.  It absolutely breaks my heart that so many of us are living rare.  It definitely makes it feel much less rare.  I have certainly learned that statistics really don't mean much once you become one.  I have also learned that you have to keep putting one foot in front of the other and just living each day as it comes because anything can happen.  Things can go from stable to critical in seconds. Things can bounce back to completely fine in a matter of minutes.  The curve balls keep being thrown, and the bat keeps having to be swung.  The rare life isn't so different than our life from before.  We still have no idea what is going to happen, how, when, or why...the only difference is that we can tell ourselves we get to prepare.

The Mighty Contributor

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