Monday, November 30, 2020

43 Weeks


Dear Sonzee, 

Another week, and soon another month will have flown by.  Tomorrow begins the first day of the last month of 2020.  I really don't have the words to adequately convey my emotions over this entire span of time that has and continues to go by without you. I sometimes find myself stopping short and daydreaming over what life would look like with you here.  I have conversations in my mind, with myself, based off of essential nothingness, and fictitious arguments with others who are still living the life of medically complex.  I sometimes find myself feeling a bit less than because my stint as a special needs mom was only 4 years 11 months and 23 days.  I promise it felt longer.  Sometimes I find myself wondering though if those who are still living that life, the ones who started before me and who will continue after me if that makes them understand more? If that makes them more of a special needs mom than me? I suppose it doesn't matter, but it still makes me confused as to where I fit.  I won't ever not be a special needs mom, I won't ever be just a regular mom, and honestly, it really sucks to be part of the bereaved mom group.

Recently I feel like so many people I know are joining this special needs mommy life.  It hurts my soul in a way I just cannot explain.  There is just this crushing feeling that encompasses my body, and then I have to remind myself their journies aren't mine to live.  Their experiences won't be ours, their stories aren't yours, and although I want to with all my being, I cannot fix their situation any more than I could yours.  It is so hard to sit back though and know the potential pain they might endure.  It just isn't fair.  No one should know anything over the journey you or we experienced, and no one should have to live and understand any part of life after.  I wish I could escape the negative parts of life.  I miss the days of ignorance and I miss the days where people I knew lived in their everything is all magical unicorns, rainbows, and blissful lives.  When did the world become so tainted?  Or is it just ours because we entered into the land of rare?  Rare isn't feeling so rare lately.

I made an ornament in your honor.  Considering I have never made an ornament minus assisting in Mr. Gabe's classroom last year, I think I did a pretty good job.  It is going to hang on a tree at Phoenix Children's Hospital.  I used a fairy mermaid set to fill out some blue rock water and put in a mermaid in the "water", with your name across the back of the ornament.  I am pretty pleased with how it turned out.  I know it isn't exactly what aba would want, but honestly, any opportunity to make something in your honor and have it for others to see is just something I am needing to do.  Maybe it is because it makes you real?  Maybe it is because it means you existed?  Don't ask me to analyze the psyche behind it all, all I can say is I now own 19 additional plastic ornament bulbs for the next 19 years of tree decorating in your honor.

Your baby brother turned 3 over the weekend.  He had his first haircut.  He had your curls, while it is significantly better for him to see and it doesn't look like a hot mess, I miss those curls.  You hold the record for not getting your hair cut the longest.  While I am happy I have your curls in a shadow box in your room, I wouldn't have ever cut your hair if you weren't going to leave us.  You had the best twirls.  Nurse Paige always did a fantastic job making them extra boingy, and you looked so cute.

Well, my love, I will end this note here.  I will be back on Thursday to honor your 10 months.

Until next time.

Love always, 
Ema

The Mighty Contributor

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