Medically Complex and the Stories of Our Lives

  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...

The Answer After a couple of hours we were called into the parent meeting room to meet with Dr. D, the surgeon who had just finished the biopsy.  He handed us a picture of the procedure, and explained that although he didn’t have any immediate answers, neither did he find what he expected.  We were left puzzled by that comment. I stared at the photo page he handed me, trying to figure out if this was a good ‘unexpected’ or a bad ‘unexpected.’ As soon as Rhyse was awake and stable we were escorted back to our room on the tenth floor.  While I concentrated on comforting Rhyse who was in great pain from the three incisions, and add on circumcision we requested, nurses, doctors and surgeons flowed in and out of the room to do their evaluations and vitals.  Apparently while being under the anesthesia some fluid pooled in his lungs and made it difficult for him to breathe. His chest and tummy were thrusting up and down, trying to get enough oxygen to functi...

Back for Biopsy Late Monday morning my in-laws had arrived from Indiana to stay with our daughters while we were once again contained in the hospital with Rhyse.  Thank God for family. Checking back into the hospital is no easy task when you had just checked out three days prior.  Rhyse was frantic and unwilling to be taken out of his stroller, screaming and shaking from fear.  The minute we arrived on the tenth floor he was ready to fight tooth and nail to get back on the elevators.  He pointed at the doors with all he was worth, and it was a wretched feeling pulling him in the opposite direction. By the time we arrived on the tenth floor the entire staff had heard about Rhyse’s bout with the IVs a few days prior, and everyone was nervous about repeating the incident. I did, however, take great comfort in being on the tenth floor—my ‘second home’ since Rhyse’s birth.  If there’s anywhere in the 12 story building I feel most comfortable and encouraged ...

Weekend Home Saturday morning was an odd time.  I had two different documents to read and sign regarding cancer research, and donating the biopsy so others could use it to ‘gain more understanding’ of Neuroblastoma.  Cancer: I could hardly wrap my brain around those words.  Rhyse’s doctors were assuming he had cancer and someone already wanted a piece for research. I wanted to keep things as light as possible for the whole family’s’ sake.  Walking around in a trance wouldn’t help anyone, especially not us parents who knew the gravity of the situation.  So with this in mind I decided we would have an hour in the morning where each parent would take a child and do something; an impromptu date. I took my six year old daughter, Maggey, out for breakfast and then just drove.  She kept asking me where we were going, and I really didn’t know.  I just picked a direction.  As we were cruising along a familiar route I spotted an estate sale s...

Cancer, 99% Certainty In a very kind, compassionate voice she relayed the news.  The CT scan had revealed a large, long tumor along his spine and sympathetic nervous system: “homogenous but abnormal posterior mediastinal soft tissue density.” We were to be admitted to the 7 th   floor for the night and begin the day with an MRI, more blood tests, and a urine catch.  “Don’t worry until you have to” were her words.  Yea, ok.  She slipped out the door and tears slipped out of my eyes…I was too tired to think clearly, or keep my wits about me.  It was 1130pm and my emotions were already worn to the bone.  I was alone and tired and I had no resistance to fear. When the doctor walked out of the room I melted.  I was suddenly thrust back to the day Rhyse was born, October 17 th , 2011 when an attending doctor told me Rhyse was “probably terminal.”  I never allowed myself to go back there emotionally, nor did I entertain the idea that ...