RARE+HOPE

Today is Rare Disease Day.  Today I start my new writing endeavor: Sharing a glimpse into our world of RARE + HOPE.  

I often say I feel very caught between two worlds.  Imagine a body of water between two very large sections of land. On my right is a path well-traveled where people live life, enjoy quiet dinners and fulfilling travel. On this land they read books, take leisurely walks with their spouse, they practice self-care and enjoy their loved ones.  There are tough days & months on this land, but they seem to come in seasons.  A beautiful balance of good and bad times, they have hopes and dreams, and plans for the future.  They raise their children and they go into a new season of empty-nesting, including even more of the above. 

But when I venture to the left side of land, the landscape looks very different. It is a land of survival. The people of this land are physically and mentally taxed to their core, they are emotionally spent.  They try desperately to seek an abundant life, but their world is shadowed.  The majority have lived on that sunny side of the land once; but their lives are turned upside down by illness, uncertainty, a depth of loneliness and paralyzing fear.  Their world is very much still going on in spite of these feelings, as they have all the same responsibilities of work, bills, child-rearing, activities, etc but they have one major, life-impacting difference.  They live with chronic and/or terminal illness.  In this case, they live with RARE DISEASE. Please note, these are not unhappy people; actually for the majority I find them to be inspiring and uplifting. They have great perspective on what is most important in life and celebrate what some may consider small or even insignificant.  Even though exhausted and some days defeated; they still find JOY.  A drop of joy, peace or a happy moment could sustain them for months.  It fuels them and keeps them going.  When walking through a dark, endless cave, the littlest bit of light can be life-changing.  My friends on this land hold onto that light.  

I float on a raft between these two lands. 

I have homes on both lands but as of late; our circumstances draw us to the land of survival during most of our waking hours. I find myself yearning for the days of simpler times; for us it is Pre-Diagnosis. For others it may be Pre-Loss; Pre-Disease; Pre-Trauma.   I dream in those times.  I am light as a feather, living plans and dreams I don’t even realize I missing in waking hours. 

I’ve spent the last several months working to embrace “Different Life.” I’ve read so many posts from families living and walking our same walk…just most are a decade behind us and I felt compelled to do something. I watch families struggling to maintain some type of “normalcy” and feel like my nearly 14 years of trying, brokenness and heart ache; happiness, coping mechanisms and internal processes would be worth sharing.  My husband of 23 years, Wayne, and I made a conscious decision early on in Diagnosis to not let juvenile Batten Disease steal our joy or our power:  That is much easier said then done.   We have two additional wonderful younger boys that I refused to have to grow up watching me cry my eyes out every single day of their childhood because I am mourning the physical and cognitive losses of their older brother.  

So, we found ways of working through the challenges, and accepting our reality…whatever is was that day.   I stopped believing there were “rules” on how things should be done and ventured into our own paths and started our own treks, the majority of have taken us into unchartered territories. We brought our younger boys along on the journey and through our experience they have learned a great perspective and a great lesson on perseverance and HOPE.  

My hope is to inspire and show a different side of living with Rare Disease. Stay tuned for some inspiration, a bit of funny, a dose of reality, huge amounts of gratitude, requests for prayer and 100% authenticity.  It’s our ride through life on our path less traveled, and I think it is pretty special. I look forward to sharing.  HUGS and THANK YOU! 

Our Rare Family and our Amazing Rare Son, Will, yesterday working hard to keep Walking!  He has a bases to run this weekend at Challenger Baseball and A Graduation Stage to walk in May!  NEVER GIVE UP!