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2 special needs kids, a sister with maybe the rarest form of cancer ever ever, cashing in my theater degree for an RN. I guess that qualifies as interesting.
“To live is to change, to acquire the words of a story, and that is the only celebration we mortals really know.”
My husband, back when he was just the man I was newly dating, inscribed these words (from Barbara Kingsolver) into a book he gave me for my 23rd birthday. At that time, he was the age I am now, and I thought him experienced and wizened. Did he understand the significance of these words, and how I would carry them in my heart as my own story would unfold and change alongside his? Perhaps he had an inkling. Fate would take us on a journey, we would write a new story, and grasp at and embrace the celebration wherever we could find it.
Back then, I made my life as a theater artist. I had recently graduated with a degree in theater and would spend the next ten years working as a professional actor. Being an actor is like being in an existential focus group. We artists explored and questioned and navigated our way through the “why” of it all. We held our mirrors up to society, we took on roles that made you question your morality, we delved deep to find out what made us human, why do we feel this way, and what can we do about it? We explored emotions, communication, and interactions. We perfected behaviors and what drives us. We argued and created lofty visions. We dreamt of the psyche and quested to understand it all.
Our second son was born screaming. He screamed and screamed and wouldn’t nurse. He was covered in vernix, was kind of purple, and didn’t look like anyone we knew. He howled so much I asked “what’s wrong?” Later that night, when Joe was a mere four hours old, I finally got a feeding in and couldn’t get him to calm down. We even took turns pacing the floor with him. I thought that was strange- shushing and bopping an hours-old newborn. His infancy would prove to be tumultuous and confusing. Difficulty feeding, awake for too long, irritated, uncomfortable, no smiles, odd muscle tone. This was like colic on crack. I took him to various doctors, who saw oddities but could not give answers. We got a referral to go to Gillette.
I’ll never forget the fear I felt when walking the halls of Gillette for the first time. Was my child like these other “abnormal” children? Who were these families? It seemed like they knew something I didn’t. They were living their lives on a different plane than ours. I was scared and confused. I was not prepared for this. My children, and all the children in my peer group, and in my extended family and the children in my entire social circle, were normal. Other people are the type of people that raise abnormal children.
But, as they say, resistance is futile. Joey was diagnosed with Williams Syndrome, a rare genetic disorder that affects mostly his heart, GI tract, kidneys, motor and cognitive development. When they told us, my husband and I happened to be sitting a few feet apart, and it was strange and uncomfortable to move our chairs together, but we did. The first step on an unexpected story that we were blessed/burdened with.
Blessed because he has proven to be an incredible gift from God. We were chosen to carry this little ball of light, hold it, protect it, and share it with the world. Burdened because whatever sorrow we had felt before would pale in comparison to this new, very dark shadow that accompanies the light.
We have a new normal now, just like those families at Gillette. Gone are the days of cavorting with the clowns, our days are filled with therapies and specialists and challenging behaviors. Those other people with special needs children are us now, and I strive every day to break down that wall that separates us from them. The wall will fall when we start by truly recognizing and accepting each other for wherever we’re at on our journeys. This includes genetic make-up, chemical imbalances, abusive childhoods, racial and social inequalities, life experiences, even how your morning was.
I believe in the journey, in the acquisition of the story. Who we are, what we become, how we grow and change. I believe in redefining normal. In normalizing the abnormal. In accepting your new normal, and sharing it’s abundance.
And when we meet out there, I hope to hear your story. I hope to see you with eyes wide open, to understand your normal. We’ll begin with tolerance and acceptance, but it will not end there.
We will celebrate each other.
Used to be “I wanna be a star.”
Dance on the table, song on a piano, follow spot, last bow.
Funniest, smartest, prettiest, his.
Now-
Successful breakfast.
Shoes on.
He said “please”.
Smooth transition out the door.
The other day, Brian, Adam Joe and I spent a couple of hours at the public pool. The boys played in the water, Joey stayed near, Adam had fun, I did not yell at Brian or cry at all. It was a monumental success that our family (all four, with nobody extra helping) has so rarely experienced.
I hold the day so dear, yet I also find it causing sadness when other days do not hold up to this simple day of mediocrity.
And mostly it is because I have nothing interesting to say. Or things that are far too interesting but also inappropriate.
I’m ruminating.
This blog used to be a diary of sorts, but now that I know who is reading it, it seems self-indulgent. Or I have secrets from them.
I’m in need of a little wind to throw some caution into, but not just yet.
Adam (5): “Joey, if you go to school and study really really hard, you can grow up to be a pirate.”
16441800 asked: Never ask google a medical question, of all the possible answers, it gives the worst the most attention. That said maybe if you had spelled it correctly you would have a different answer. Joey will be alright because Joey will be alright. I think he will cry and pinch for about four days and then slowly regain his darling personality and begin to eat better. I'll take Adam as much as possible (more than usual). Let's get r dun.......after your diva role
I’m so confused. Who is this? I know you, right? You’re not a stranger that’s gonna come take Adam?
Bullet points only…
so frazzled..
I really should be doing something else. I’m in the midst of memorizing dense irregular collagenous connective tissue, dense irregular elastic, dense regular connective, elastic cartilage connective tissue…and the like. I also open a play in 2 days. Also, Brian has been away from home working long hours. Also, Joey is sick.
I took Joe to the ENT yesterday, and got unexpected news. He not only has to have his ear tubes replaced (expected news), but he has to have a tonsillectomy and an adenoidectomy. While he is under anesthesia, he’ll have an echocardiogram, so we can avoid a sedated echo later this year. We’ll spend the night in the hospital and then I am to prepare to care for him for a week “as if he is a newborn”.
Added to the list of concerns is the fact that anesthesia for our little WS kids is like kryptonite. It is NOT a desired experience. In fact, if you google “tonsillecomy williams syndrome” you get a lot of “death”. F you google.
Commence thought pushing out of head.
He will be fine. He is in GREAT hands. His surgeon knows all about WS and anesthesia and assured me she does this all day long. She is a specialist and is one of the Mpls/St. Paul Magazine top docs.
I should be saying more on these subjects, but there are too many subjects right now.
Or circumstance!
I dissected a rat today. I cut it’s skin, hacked through it’s teeth, cracked it’s ribs apart.
It was surreal!
Even more surreal was the air of nonchalance about the whole thing. The instructor simply told us the scalpels were over here, the rat was in a bag in a cardboard box, the gloves were over there, make small cuts through the masseter and jawbone, shallow- towards the ear so we don’t go into it’s brain. Go.
What? Wait! Shouldn’t we pray or hold hands or giggle or something? We’re not even going to acknowledge how incredible this is? Do the others not think this is incredible? Who am I? What am I doing here? And should that 18 year old child be allowed to waltz around the room with that scalpel?
I guess I really am a “theater type”. My kinfolk and I, we would recognize this moment. We would come up with ‘stories’ for our rats (I did). We would wonder aloud how they were killed (I did), feel bad when we found out our rat had babies in utero (true), and give the poor sacrificial critter a name (Lady Penelope). But I was there, alone, feeling the drama of the situation, whilst my co-eds went on about autopsies they’ve done, how boring rats were, and should we peel it’s skin off?
I guess you can’t ever take the drama out of this girl. On my way to my next class, (Microbiology-where I get to wear a lab coat!), I parked in the “Fine Arts” parking lot. I took the long way and walked through the campus theater. People were singing and making total asses out of themselves. Just had to feel a little kinship before my next science adventure.
‘Twas three years ago that God brought the little bringer of light into our lives. Also the hammer. He also brought the hammer down. Alas, these things go hand in hand, I’m told. Joey’s birth wasn’t beautiful or inspiring or awesome (as in “full of awe). I was induced, I cried because I was so hookedy-hooked up to everything, and I spent a great deal of time beating my mother and husband at Jeopardy. I had the epidural, spent a few minutes feeling pressure, followed by the tumbling out of the little one, followed by the screaming. He screamed and screamed and wouldn’t nurse. He was covered in vernix, was kind of purple, and didn’t look like anyone we knew. He howled so much I asked “what’s wrong?”— but not in a fully committed kind of way. More like “Oh my sweetie little-baby-darling- mushy-facey baby boy, whatever is the matter?” Asking “what’s wrong?” and truly meaning it would give too much voice to the questionable thoughts coming into my head. ‘Twas the first time for pushing said thoughts out of head. Wouldn’t be the last. Later that night, when Joe was a mere four hours old, I finally got a feeding in and couldn’t get him to calm down. We even took turns pacing the floor with him. I thought that was strange- shushing and bopping an hours-old newborn. Commence thought-pushing out of head. After the questionable thoughts were gone for the time being, we did what all parents do after the birth- bathed in the bliss of our newborn son. Long gazes, hushed tones, sunlight streaming through. Fluttering eyelids, my lips on your cheek, suckling sounds and marshmallow skin. At that time we were all innocent.
I took Adam to church with me this morning. During the prayer time after communion, all I prayed for was for Adam to stop talking to me and poking me so I could pray.
