An Expert of All

Any mom needs to be a master of everything… it isn’t just special needs moms.
For three months, I was an expert on breast milk and pumping.  About four months ago, I became a professional level sleep trainer of toddlers.  I can make my own organic baby food, and I know every single nuance of Disney’s Moana. Yep, mom-life has me feeling like Hei Hei on the daily.
But special needs moms, well, we gain a few extra “skills.”  I can draw you a semi-accurate picture of my daughter’s heart & explain her three defects in detail.  I consider myself well-versed in genetics compared to the average housewife and I pride myself in my ability to replicate many of my daughter’s therapies at home.  While my daughter may not have a feeding tube, feeding her is more complicated than the average bear, so I have also become her personal dietitian, counting calories & learning to fortify purees in order to meet her need to grow.  My spare time is spent on a variety of Facebook groups, hoping to inspire a new mom and help her through the journey.  I’m currently communicating with two charities about finding a way to pay our bills while also attempting to apply for a variety of government assistance programs (which I’m sure we won’t get, but that’s another post for another day).  I can communicate in basic sign language and I attempt to keep up with the lives of all the other Trisomy families I know.  Some special needs moms amaze me, because they balance everything I do, along with feeding tube care, trach care, vent care, and a million other more complex things.  Georgia, as special needs children go, is pretty low maintenance.
But finding a balance between continual research and just being a mom is, in it’s own way, a very important skill.  About once a month, I dive into Dr. Google and try to find out anything about my daughter’s rare condition.  I’m always upset at the end of the day, because the rabbit hole never provides much in the way of answers or expectations.  No, there is nothing on Google about the one in a trillion who has her condition, and the very little I do find, usually isn’t good news.
Yesterday, I reached out to the Chromosome 18 Clinical Research Center out of Texas, hoping they may have answers.
They have no one in their registry with a disorder like my daughter’s.
The average person has better odds of winning the lottery than having a living child like mine.
And I have absolutely no clue what to expect.
So I cry, I watch a sappy video, stare at pictures of her for hours…. and at 8am this morning, we are back on the grind, as being my daughter’s advocate is a full-time job.  Being a wife, a stepmother, keeping up with this life, is a full-time job.  I don’t have the luxury of being able to mourn the future I know nothing about.  I can’t ruin her day because I don’t know what she’s going to be doing five years from now.  No, my family needs me, in all roles.  The sink is full of dishes & the dryer is full of clothes.  At 11am, we have a doctor’s appointment, which I’m sure will set off another chain of tasks & responsibilities for me.  I will never again be able to spend a day, just vegging out, with nothing to do and no one to need me.  And maybe I should mourn that instead….. I’m not sure.
But right now, I need to get us ready for our appointment.  And on to another day.airbrush_20180718221051

One Comment

  • Brea Hodge

    I love everything you write, I make a point to because you express special needs parenting in a way most of us moms can’t. I just hope you know how amazing you are with Georgia your strength & perseverance inspire me. I love followong Georgia’s story her beautiful face seriously lights up any bad day.

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