Our New Normal [s] » Our little family's realization, that there is no normal

Dear God, Thanks for the Crap | part 1

There are things in life that just suck. No matter how you look at them.

There are things in life that just suck. No matter how you look at them.

There are optimists and there are pessimists. But even for the ever-smiling, eternal optimist you have to admit, once in a while, there are just NO redeeming qualities about some situations. You may try and see it through “rose colored glasses.” You may try to view a glass as half full when you know good and well it is really half empty. You may try to (sing along with me) “… always look on the bright side of life…” *insert whistle-along.* But there are those (insurance commercial) moments that come at you fast. You’re not only left with your head spinning so fast you don’t know which way is up, but you are left so hurt and wounded that you are a far cry from any “positive.” And you just have to admit- “Yep, this just (dot dot dot *expletive expletive*) sucks .”

I had a moment like this almost two years ago.

My daughter had been on a waiting list for a pediatric dermatologist for 3 months, and I almost didn’t go to the appointment. It was such a pain in the butt to have to take time out of our busy lives to go to this specialist that was (in my mind) going to just prescribe us a cream and send us on our merry way. You see, I have another child who was born with a cleft lip, a cleft gum, and a super-rare (literally one in millions) condition called Microphthalmia which literally means “little eye.” I recently recovered from 3 years of adjusting to “a new normal” and watching my baby son have to endure surgery and painful eye exams and repeated fittings for a prosthetic eye. Then on to monthly visits to have it adjusted and countless nights of crying myself to sleep; life had just about returned to a manageable pace with just a whole lot more doctor and specialist visits that had become a regular part of our lives.

But, something told me not to miss this appointment.

I went expecting a skin cream. I left absolutely devastated. I know people throw this word around alot. But “devastated,” as in, “to cause (someone) severe and overwhelming shock or grief,” devastated. Uh-huh. That kind.

My precious, gorgeous, full-of-life daughter, our firstborn, just one month into 5 years old, also had super-rare (literally one in millions) illness called Juvenile Dermatomyositis (yah, me too – couldn’t pronounce it for months…) that would kill her if not brought under control, and would never go away. Her best hope would be to learn to manage it. If not managed well, it could lead to a wheelchair, and chronic pain among other horrible effects. The treatments for this disease can be considered even worse than the effects of the disease itself, initially.  Rock + Me + Impossibly Hard Place.

Glass (dot dot dot) empty.

To say I dove into a black cloud of depression is a ridiculous understatement.

But, I faked it as best I could because I knew she needed me. I couldn’t totally surrender to the abyss. I still deal with the post-traumatic stress of these last two years. You become an expert at the emotional “shove and stuff,” and so then later on when you drop a box of cereal and it spills all over the floor, it causes a panic attack. Weird stuff.

Fear, when allowed to take over – will absolutely oblige – and then some.

Well, there I am. with no end in sight. Again, dealing with another “new normal.” Although, I had no hope that we would ever be able to find a normal with this one. Her life as we knew it was over. And… so was mine. But I couldn’t talk about that part to anyone. And boy did I become entitled to my “empty glass.”

There is so much more to the story, I’ll get to the point.

I began looking for an answer that never came. Nothing that satisfied, anyway. Doctors didn’t agree. Friends didn’t know what to say. Mentors didn’t say much (maybe by design). My sweet husband had never felt so powerless in all his life – he was wrestling for his own glimpses of perspective.

I dove deeper and deeper into a very dark place in my emotions and my heart. And with each trip to the hospital to helplessly watch my daughter go through horrific treatments with the hope to only manage this horrible disease, I couldn’t contain the building pressure of hatred, confusion, anger, resentment (with no one to point a finger at)… I remember crying out one night, out loud, in the dark, through my tears… “I’m helping everyone else, who’s going to help me?”Please don’t have me committed for admitting this next part. But I clearly heard a voice that came from deep inside of me that said,“Be thankful for your situation.” THAT’S it? THAT’S the help? Be thankful for this no-good-could-possibly-come-from-this, situation?


And/or watch Vivia’s Story below:

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