Medically Complex and the Stories of Our Lives

I recently read a shared post called, " How to Survive being friends with a Special Needs Parent " by Fiona Russo.  And though I agree with one of the feedback responses who said using the word, "survive" seemed a bit patronizing, once you get past the title the rest of the article rings quite true--at least for most of us! Friendships are so hard: I have written about this in a previous blog. But this is still a topic of which I cannot really wrap my mind around for more reasons than, "being a special needs parent."  Being social, apparently, comes easy for some personalities and not so easy for others. And you know of whom i'm talking about: introverts.  The "strong" (or so I have read), silent type who have a myriad of words floating around in their brains, but rarely get let out of the gate for self expression. And yes, I am a self-confessed introvert. If I could have chosen my personality I would not have chosen introvert!  But, qu...

In a recent trip to the ER for what I KNEW was an unusual infection I experienced--yet again--SOP. Standard Operating Procedure.  I don't make ER runs for nothing.  After four years I know when Rhyse is experiencing symptoms beyond typical .  I recognize the changes in his behavior, skin color, urine output, formula tolerance, energy level, breathing pattern and oddly enough the smell of his vomit.  There's "just a virus" and then there is "an infection has taken over and he needs medical help now!" After check in and vitals we were escorted to a room at the end of the hallway, in fact the room at the furthest end of the ward.  The isolation room. Upon discharge from the NICU four years earlier, as a matter of procedure, Rhyse's arm was swabbed for MRSA.  To no surprise he tested positive. No wounds. Just a smattering of MRSA inconsequential to his health at that time, or any time really.  But the rule books say, "once diagnosed always diagnos...

"13) Don’t lose yourself.   Don’t let being the  parent of a special needs child  create or reshape your identity. We are many things, being the parent to a child with special needs is part of our identity. But it shouldn’t be all of our identity. When you focus all of your life, all of your contacts, all of yourself around your child and their needs, who you are can get lost. Find things in your life you enjoy doing, a glass of wine, a hobby, shopping for yourself." I have yet to figure out what the true definition of a "special needs" child is, exactly.  But in lieu of a well-fitted definition I think number 13 from 20 Things every Parent with Special Needs Kids Needs to Know may be the closest!   I know that in the first two years of my son's life my identity was lost--totally.  And after four years i'm only recently in the process of re-finding and re-defining my identity.  It's not easy. It is more of an uphill battle than I wou...

As I sat in a chair watching Rhyse play in the Family Library at Children's DeVos Hospital I couldn't help but stare at the mayhem the Thomas the Train track set had become since our last visit a few days prior.  It is our custom to arrive at the hospital a half hour early to make a mad dash to the Meheny Terrace Bistro for a cup of decaf coffee with vanilla syrup and cream, and then to the Family Library for play time. At our last visit, only a few days earlier, the table was all set up and a boy the same age as Rhyse was already racing Percy around the tracks.  As the two boys jockeyed for position around the various structures they quickly figured out a sharing system that allowed them both to play with the same train. Of course most of the trains had long since disappeared, leaving only Mr. Percy. So on this day, with a scattered, broken up mess, Rhyse had no idea what to do with it. He walked around and around the table eagerly trying to find two connected pieces to p...

  We long to be real, to know others for who they are, not how they want to be perceived.  And yet we are taught to be STRONG, to barrel through life as if we are modern day superheroes--impervious to the battery of storms that come our way.  How many times have I read, "you're a strong mama, you can do it" on Facebook to those who are expressing horrific emotional pain or loss.  Really? Don't be vulnerable?  Don't feel?  So be a superhero?  And if you're not, then what? Vulnerability does stink, but it's also a breath of fresh air, a kind of humanness we long to experience. I'm not saying don't be encouraging, i'm just saying there certainly seem to be times when being told, "you're strong" is far from reality, and we need to know that it's OK. Sometimes I get tired of those crazy memes(where in the world did that word come from anyway?) on FB, but then I read this one yesterday, "Sometimes I get tired of being stron...

It has been nearly a month since my son has wanted a bite of bread and peanut butter. He's been sick with infections of different sorts, on and off three different antibiotics and back on 100% GJ feeds.  I get so excited when he's 100% oral Peptamen Jr. and so discouraged when that number dwindles to zero.  After four years you would think this "normal" would just be--well--normal! But it's not. Sometimes I still can't wrap my  mind around this Noonan Syndrome thing.  I don't question where the syndrome came from because there are no answers. It just "is."  But where is it going? What will the future look like? Will he ever learn to live on table food? Will his little body ever learn to tolerate table food, save two bites a day?  How can food be the enemy?  How can I eat too much and he eat too little?  I am laughing at myself right now.  I feel guilty with a scoop of ice cream and yet I am exhilarated when my son eats one bite! Oh, the c...

Tis the night before turkey day ,and all my little eaters and non eater are packed quietly away in their beds, dreaming of white turkey and pumpkin pie with mile high reddi whip on top. Some family members can't make it, others haven't made it in years, so the mix will be fun and refreshing. But here's the jib: whilst the folks frolic along the lines of food and drink, slump down in chairs to stare at a family member, or the boob tube--which ever is more attractive, i'll be counting  oral intake calories for Rhyse. Dividing those calories by the time of day and the amounts he needs to sustain his energy, and subtracting the volume of vomit along the way. I'll be chasing him with his MOOG feeding pack, and inconveniencing him as he tries to wrestle around with his oh-so-awesome uncle Josh, whom he speaks of nearly every day of his life. And finally watching for signs of severe fatigue, and finding ways to allow him quiet time to recharge until it's time to go...