Monday, September 17, 2012

Saints in Scrubs

Thursday was an awful day. I probably cried 1 gallon of tears. I was terrified, and I just couldn't hold it together, which made me stress, which made me make a lot of little mistakes that seemed like the end of the world, which God decided to use to show his ever present mercy.

By the time we left for the geneticist appointment I had cried many times. Sobbed, in fact, at the prospect of facing this unknown. To say I was anxious wouldn't even begin to describe the complete breakdown I was having. Paul, Mae and I hopped in the car just as it started to drizzle. We arrived at the building downtown after I had gotten turned around by my GPS -Thanks Technology!- I pulled into the garage only to read a sign that said to move forward, DO NOT REVERSE!, which threw me and made me think I was pulling into the employee lot. I rang the buzzer and told the voice on the other end that I had made a mistake, and the voice instructed me to stop inside and get a ticket.

Oh, is that all?

I pulled into an emergency lane, freaking out about the time. I saw a guard station at the exit gate. I hesitated. I couldn't decided what to do. The clock ticked forward another minute. I grabbed Paul and then Mae. I stopped a stranger to ask where I should get my ticket. She pointed me in no less than three different directions. The clock ticked forward. My eyes filled with tears, and I said, "Okay, thanks!" in the most forced cheerful voice I could manage, which probably sounded like I was screaming at her. I turned to get back into my car.

"Do you need help?"

I spun around. A man in green scrubs with a surgical cap on marched toward me. "Can I help? Is your appointment in there?"


"Is it with cardiology?"

"No, we're here for the geneticist. I think I pulled into the wrong place. I'm turned around." I just couldn't stop my eyes from welling up. He was going to help!

"Which floor?"

"Um, 19."

"Hold on." He ran to the guard station at the gate, gestured toward me and came jogging back. "Here's your ticket. You can park in here. Looks like you pulled too far forward since it is one-way." A car pulled out of it's spot about 30 feet behind my car. "Oh, hang on!" He ran back and stopped traffic and waved me back. I reversed and parked. By the time I hopped out of my car, he was gone.

The whole experience just about broke me. I sobbed the rest of the way to Dr. P's office. I had settled a bit by then because Paul was so excited to ride in the elevator with so many buttons. We had our appointment, and then were sent to the hospital across the street for the blood draw.

I will spare you the drama that followed getting to the hospital, and then to extended care for the girls before it closed at 6. I will only say this: That doctor in his green scrubs was Christ. I mean no hyperbole or blasphemy. That doctor was animated by compassion for this weepy mess of a woman with two small children at his work place. He did very little, but more than any other person of the hundreds around me were willing to do. It took all of three minutes, and he absolutely saved me. It was clear he was in a hurry, he skedaddled immediately. Three minutes of his time gave me the strength to face the rest of that trying day, to not snap at my bouncy, clueless three-year-old, to remember that God cares about my rough day enough to show me in a clear and concise way that He is always present, caring and active. I pray that I can do that for someone else just once, even if I never know it.


Friday was better, though I was jumpy. The results would come today. Before I left to get Paul, I called the office to leave my message that I was waiting for Mariana's results. I picked Paul up from school and drove to pick Scott up for lunch. We sat down to eat a yummy lunch when the phone rang. It was the doctor's office. 

Dr. P told me that if the nurse called all was well. If Mariana's numbers were less than perfect, he would call. "Just remember, it may be that she had an off day and we'll just want to re-test next month to make sure it's not a downward trend. She's a person, not a machine. Numbers fluctuate."

I handed Scott the phone. "Hello? Yes, I'm her husband, Mariana's father. Yes, we've been waiting to hear back. Yes, she's right here with me. Well, I would love to hear the results too...Great, thanks! You too. Bye." Apparently the nurse expected Scott to hand me the phone because I am the mother? I don't know, but it tickled us.

We had our moment of relief. The tension released and we were suddenly unbound. Paul and Mariana continued bouncing around as though time hadn't just stood still.  "Thank you for letting me answer the phone, that was kind." 

Well...."Well, it wasn't all that generous. I, um, well, I didn't want to have to tell you bad news..." 

We laughed, a little too hard. We enjoyed lunch, I took Scott back to his office and off I went to pick up the girls. No more blood tests for six months. We've been told it gets easier, and I look forward to it.

Thursday, September 13, 2012

The Fear that Has a Name

Today is the day that I dread. Today Mae has a blood draw. They will test for, among other things, cancer. Leukemia. The risk before age 7, we've been told, is 1 in 100, or, 1%. This sounds so small and negligible. However, we had a 1 in 900, or, 0.1% chance of conceiving a child with Down syndrome, so, screw you, Statistics.  

*The draws are due to increased risks, there is no other indication she has a thing wrong with her.

I do not think Mariana has cancer. I do not dare believe it is impossible. But even the word cancer is such a bomb to the system. Of all the frightening things Mariana might have to deal with, the utterance of the word cancer made me feel like the doctor stuck a vacuum in my mouth and my lungs deflated.

It wasn't so much the fear of my daughter's death as the knowledge that even treatment is a tortuous path. It crushes me to see her in any pain, even if it's just gas. I hate to hear her fuss or cry because she's the baby that doesn't even fuss at a vaccination. Her bottom lip might pop out for a good strong frowny face, but she doesn't cry. I can't even imagine Scott during such an ordeal. He's upset if her diaper is too tight.

Yet I have faith that God's grace will sustain us come what may. It is the waiting that is agonizing. I imagine Christ's Agony in the Garden. Different, yes, but that waiting, the pleading, the surrender to the will of the Father, it hurts a little too much. I feel incredibly blessed by the distractions of my children, of having the task list of things that have to be done anyway. While I may complain that laundry is never done, and my floors are coated with filth and homework is always a battle, I quietly thank God for it all. If I had time to entertain my anxieties, I would never move.

But life is still moving and still good. We bought a house. The school year hasn't killed me with paperwork yet. Best of all, Mariana was given clearance to start solid foods! We started with applesauce. (Organic, no sugar added applesauce, made by fairies and lowered from Heaven by a golden thread, lest anything contaminate my preshus bay-bee. Never you mind the dog licks her on the mouth every day.) It would seem that she approves of applesauce. In fact, I believe I have now been promoted from Queen of Delicious Sustenance to Empress of All Good Things. We captured some photos, but nothing could capture the looks of, "Whaa...are you? For me? I adore you and will do anything you ever ask me." cross her face. Believe me when I tell you, her face is what I imagine mine will be if I ever get to heaven.

It is good to be in this world where not all things are terrible, even when many things are terrible.
What is going on here?
You are locked in as my favorite parent, Lady.

Wednesday, September 5, 2012

Six Months

We celebrated today's milestone last night by partying all the live-long night. Mariana was up every three hours, and I was deeply considering giving her a potato or something to gnaw on. I just made myself laugh with that visual...Baby gnawing on potato, I think I'm a bit punchy.

I've learned a few things (and I litterally mean few) in 6 months. Here's my lazy way of celebrating 6 months of Mae.

Partial List of Stuff I Learned Having a Special Needs Child
  1. Every single human being has special needs. Having something diagnosed makes everything a little easier. How do you diagnose that child who is a lazy student? What if it's because school is too easy, or what if it's because school is too hard or what if it's because biting off a hangnail is more fun than math?
  2. Special needs people are first and foremost human beings and therefor wonderful and annoying in their individuality.
  3. Babies, even special ones, are jerks. They do what you don't expect and then right when you have it all figured out, change the rules. And they have the nerve to object to their toes being nibbled off.
  4. Reading too much can make a person cynical, but it can also fool a person into thinking that good parenting can "cure" all the problems. It can't. It won't. You will fail at a bunch of stuff anyway. Failure won't kill anyone, but hopefully it'll make you humble.
  5. Developing a better relationship with your spouse will save your sense of self. It is way too seductive to make this thing the center of your universe, and thus lose the fact that you have value with or without this wonderful being.
  6. Developing a better relationship with God is the fastest way to get answers. It's always a surprise and yet not a surprise when I am struggling with something and I remember, "Oh yeah, I might want to have a chat with God about that." Almost immediately one of two things happens: I read something or talk to someone who helps, or I gain the insight that this particular thing is not a priority and I can let it go.
  7. Babies will start squawking the minute you sit down to type, thus reinforcing the jerkyness they posses. Luckily they are cute.
Hey! I'm stahvin' here!