"Being like everyone else sounds pretty dull to most of us..."

I haven’t blogged much recently, as the main focus of my blogs are usually my children.  As they grow I am doing my best to respect their privacy and limit the amount of personal information I share about them.  But, this week as I was shuffling Owen to his four separate specialist appointments at Gillette in St. Paul I felt something, something that I felt would be worthy of a new blog entry…. I felt like we fit in.

"Being like everyone else sounds pretty dull to most of us, but for some, a chance to be like everyone else is one of life's greatest prizes."

Because of our children’s complicated medical conditions we’re regulars at major medical facilities.  It’s a bittersweet homecoming each time we are greeted by name by the reception staff. Even more bittersweet is when we see families with infants on the beginning of their journey- how isolating and lonely it is at the beginning.  A children’s hospital can be as equally magical as it is somber. As parents, we are all brought together for reasons no parent wishes for. We are all wounded from the battles our children fight and for the battles we fight for them every day. The wounds are deep, but the love we feel for our children is so much deeper. We are fueled by the fumes of hope and caffeine and we solider on to the next battle with the strength of a thousand armies. We often feel intensely defeated by the process and all the procedures, but we fight on. There is no battle too big or odds too long, we solider on- we must.  

As we hustle from place to place still reeling with information from the last appointment with emotions somewhere between maniacal laughter, desperation, hope, anxiousness, and bravery- we connect.  We see each other in these transient spaces- in the brief moments between making up imaginary games to get your child to participate in therapy, between the poking and prodding, between tough procedures, between the surgeries and invasive exams.  In the hallway, with just a passing glance we share the triumphs and pain that is parenthood for people like us- and in just a nanosecond we find the comfort and strength to carry on.  We are not more or less of a parent than any other, but we are as different from normal parents as our children are to the world.

But, this is one of the things that makes children’s hospital magical.  It’s where we are like the rest of the world. There is such a strong sense of community and comradery among the families that walk the halls and sit in the full waiting areas.  There isn’t a sideways glance to be found or snide remark to be heard because, we have all seen and heard enough to last a lifetime.  Without speaking a word to each other, we all share so much.  Our most precious gifts are with us for everyone to see.  Our children with glasses, speech delays, birth marks, scars, wheel chairs, developmental delays, assistive technology, cochlear implants, feeding tubes, and every other medical related challenge imaginable- all together.  We pass along small smiles, compassionate glances, and giggle together when our children do silly things, but not a single ounce of judgement is passed. 

Our lives are filled with the same joy and pain felt by every parent on the planet, but with a splash of insecurity, fear, immeasurable hope, and unbelievable pain. Incredible amounts of energy are expended by a special needs parents in effort to make things as simple as grocery shopping be effortless.  In almost all ways- nothing is effortless. Nearly every success is a product of meticulous thought, planning, and preparation. The planning and preparation for some of life’s simplest errands can be exhausting.  We have learned to plan and manage the day-to-day excursions just fine, but what we can’t plan for is how people react to our unique family. It’s not uncommon to get a questions now and then about Owen’s flashy red glasses, his speech challenges, or his very visible medic alert tag- and for the most part these people are very polite and are asking with the best of intentions. I like those people, because I know they’re good. They seek to understand our family and I’m an open book for people like that.  Those moments have become easy to manage and not embarrassing in any way.  The part I have the most difficult time with is the people, families, and children that are old enough to know better- who can’t control their impulses to turn and stare or worse yet, yell at audible levels to another person within their direct group to, “Look!” 

If you’re reading this, I highly doubt you’re one of those people… and if you can believe it- Yes, it happens.  It happens more than you can imagine.  I refuse to ignore those kind of people, because I think it’s unacceptable to let them think that they can continue to carry on with such atrocious behavior.  I’ve done my best to passively confront these people with a stern look or witty comment- those are the moments I’m always on guard for. I want to shield my children from the cruelty of the world as much as I can… and if it takes me slinging insensitive and rude behavior right back, so be it.  

But, as I sat eating a snack with Owen in the waiting area I noticed I was kind of relaxed.  We were just having a snack, that’s it… not another thought in the world.  Just me & Owen having apple slices in a room full of strangers, who all undoubtedly seen us, but didn’t pause a second to analyze us.  I wasn’t on high alert hovering over Owen to wipe the bits of food that sometimes creep out his nose as he eats, I didn’t worry that his glasses were on straight, I didn't worry about the bags under my eyes or having a coffee stain on my pants from the rush of getting out the door at the wee hours of the morning, I didn’t worry about Owen's sometimes overly friendly nature making anyone uncomfortable, and I didn’t worry about new kids giving him the googly eyes or hiding from him. I wasn't on guard. I didn’t have a worry in the world… it was just as it should be. Just me and Owen having a snack. It was such a strange feeling to feel so at ease in a place so full of people we didn't know. But these weren’t just people, they were people just like us…