Death, Disney and Dance

These past months have flown by, our life has been impacted by roller coaster highs and lows.  There were 3 major deaths; a great aunt who lost her battle to cancer, an ex-step mother and the father to my best friend's daughters.  I wasn't close to the latter two, but their passing deeply affected the people I love and you can't help but grieve with them.  My great aunt was close, not in that we spoke regularly but spirit close.  There are not many people in life I just know their soul, but Phyllis was a person that everyone witnessed her beauty. Through her smile and eyes you saw her kind heart, through her actions you saw her purpose and that was to make everyone around her feel like they were the most amazing person she had ever met.  Spend 10 minutes with her and you wanted to go change the world.   

Through my job, I won a trip to Disney, so that was also on the agenda to plan.  Anyone ever plan a trip there and they might feel my pain.  We are incredibly grateful, but it legitimately took me 3 days of planning to get 4 days of Disney itinerary pulled together.  I knew nothing of Disney, so I had to Pinterest board it up, read articles, reviews and insider tips for all the good stuff.  Then plan out walking times, waiting times, food times, ride times... how to get Mickey and Minnie to help Shane announce the gender of the baby!  I was incredibly excited for all the massive fun we were about to have and even more overwhelmed with the fear of my past experiences with planning basically anything in my life for the past 34 years.  Over plan and then throw it out when the time comes.    Hopefully after this trip I can follow up with some tips I learned that especially can help the special needs caregivers out there longing to go but justifiably cautious because, well it's Disney!

In between the deaths the Disney and the rest of all the life stuff, I took a class with SCORE a nationwide org that helps small businesses start, grow and flourish.  The class was all day at a local library and was about $70.  The babysitter canceled last minute so Joe worked that night and then stayed up the next day with both kids (he's rad).  And I learned so much!  So much that I was overwhelmed and decided that if I was going to actually launch I needed to get a game plan together or I might quit before I begin.  Everyone who knows me is aware of all the free advertising I offer about One Note (if you aren't using it, then go Google it, now).  So I started a One Note notebook, and listed some chapters while taking the class, and then took some notes on each chapter creating a page for each subject and action items on each page.  The class was comprehensive start your own business and covered a variety of topics you need to think about and begin to plan for while in the startup phase.  The greatest thing about the class is that professionals in each field speak about the various facets to starting a business (CPA, attorney, insurance, marketing).  So if you have additional questions, these are people donating their time to help you grow that you can contact directly.  Some of my pages simply have the action to make a phone call.  Some pages you can scroll through with all the questions and thoughts.  One of those actions was to file with Secretary of State and request EIN number.  After a week of reading up on how to do this, beginning and then chickening out, timing out of the forms and even being too late one night by 20 minutes for the EIN site; Diagnosis Undefined is a legitimate business with a tax number and everything!  I still need to file for non-profit and receive 501(c)(3), but at this time, I can begin moving the site forward.  Hence the (happy) Dance part of the title!

In my quiet moments, looking back I can see more clearly the lessons I've learned over the past couple months.  Even while reeling from tragic losses, it's okay to plan a proverbial Disney in your life and you can honor someone's strength they gave you by making time to live and even dance.  All of this and more is happening simultaneously.  Some things are all consuming to me, but life doesn't stop.  The sun comes up, traffic lights change, and the waves don't stop crashing against the sand.  Even the hardest moment will pass and then there is the balancing opportunity I'm given to step away from the pain while planning something fun and unexpected.  That step away allows me to be still and find a way to keep a piece of a person I miss alive by sharing their beauty with others.  And then finally to seize the very seconds of the present to do something that celebrates the very absurdity of it all in the first place. 

This song is dedicated to all of you in a hard place, in a Disney place or just dancing.

Undefined, unleashed and some days unhinged.

The site started a couple years ago in my head.  There has to be a way for us caregivers to identify each other out in public.  Go on ANY special needs social media site and you'll see it mentioned too.  I'm just a mom, I work at a stressful job and have two kids, 2 dogs a cat and a husband that works night shift.... there is no way I can do this too.  But it won't stop in my head, it has to get out.  I've had enough life coincidences to know when the universe has stopped being subtle.  This site and definitely this blog will change over time.  But in my Mom's phrasing, "just do it, even if it sucks".  (I'm aware this is not original material, but it is true.)  Somewhere you begin, and then your learning ramps up and someday I hope to look back at this first post and shake my head while I cringe.  That is the beauty of being where I'm at in life, I'm aware that I get to grow.  Instead of worrying about the rest, I focus on trying to figure out what I'm even supposed to learn! 

To bring it back to the initial thought I wanted to share; while this site began years ago, only recently I took the fuel of being fired up after yet another call about my son's behavior at school, subsequently going to pick him up since he was sent home for a "reset" afternoon.  I took more money than I should have, and started the site to get my tail in gear.  I've so far managed to pull some pics from my not-organized pictures folders and hodgepodged them with some gettysimages.  I want there to be some of us and some of what I envision. Soon to come are the actual badges.  For now, this is about identifying and validating those who lead this life style.  It is extreme and it is different but it is no less.  As life permits I hope to grow in my voice on this platform and expand my other ideas about unifying the special needs community.

When I'm out in public, I would love for the people around to give me and the person I am caring for extra allowances.  I happen to have a young kid, and while he could pass for misbehaving, he is experiencing the world differently than I am.  He needs extra time, explanations, empathy and sometimes he needs nothing at all and he's just misbehaving.  There are others who care for not so little ones, and they need this "extra" (insert the need here).  How do we translate to others this possible need for help, or allowances, without hurting the integrity of the person we are caring for?  How do I recognize another brave and mighty soul (aka caregiver) so I can nod my head in reverence at them?  My thinking is I wear a badge or patch that identifies ME as the caregiver.  Right?!

My child does not need sympathy or pity.  He needs support to navigate this big world in a manner that he can interpret, internalize and then learn and grow.  As his caregiver I have a general knowledge of what he's learned and mostly how he needs support.  It is MY job to help interpret him to the world and the world to him.  I can only help. In my head his path, his journey is similar to Frost's Road Not Taken poem.  The poem clearly states that that the two paths "equally lay/ in leaves" and "the passing there/ had worn them really about the same".  My son's quality of life is equal to mine, we both walk into the supermarket, but we both experience it very differently. 

So that is the big reveal.  I want to nod validation to those other special needs warriors, you bad A's, you knights and ninja's.  After badges roll in, I'm going to start taking them to local grocery stores and big name stores asking to offer a special needs awareness video, and then ask if they can appoint one special needs person per shift to wear the badge.  Maybe they can help walk around with us while we're shopping... this brain never stops. 

Anyone want to make a special needs awareness video?