Thursday, July 28, 2011
It's reasonable to wonder...
Today was a busy day. I was up early to see my endocrinologist about my thyroid issues. It's always fun to have a sonogram of the neck. I passed the time texting my husband.
Time was stuck on fast forward. I dreaded this day, I put it off as long as I could and then, when I didn't have the balls to take the next step, I gave the contact information to my husband. He made the appointments.
Today we went to see the geneticist.
I was cranky, angry, rude, obnoxious and terrified. We have four Autistic children. It's reasonable to wonder why that happened. Who's responsible? Is it genetic? It has to be...
It's the who's responsible question that turned my blood to ice. What if it's me? What if it's him? Either way, I didn't want to know. I knew that I would be angry if somehow my husband was responsible for a genetic mutation. I mean, really, shouldn't one know if they are a mutating?
The scariest possibility is that it's me. I took it so hard that I was not able to successfully carry a pregnancy without lots of medical help. I didn't want the knowledge that my body failed my children.
Today was a comedy of errors and delays. We ran to each of the girl's schools to pick them up. Each of them are now in different programs based on their level of functioning. We're not taking the easy road on their education. It would be so much easier if they are in one place.
Each school meandered and dithered. Even one of Brandon's therapist got into the mist and delayed us by running to get photocopies of his charts. Really, today? So whereas I expected to be early or at least on time. I was only able to hit two schools by appointment time. I dropped my husband off with Baby, Bugabuga and Handsome and jumped back in the car to get the CEO.
The CEO was strapped in her seat and I was about to pull away when the school secretary ran out. "You have a phone call!"
"I'll stay with her. Pick up the blinking line on phone."
I hurried in and thought to myself, this cannot be good. I look down at the phone and gained a new level of respect for the woman. There are no less than 40 lines and three are blinking. Another office worker tries to help and we lose the call three times. Really?! Come on!
I hate being late.
I finally connect with my husband.
"We're at the wrong office. It's the other one 2 miles away."
"Take a cab! I'll met you there."
"My wallet is in the diaper bag in the car. I spoke with his assistant. We need to be there by 3:00 in order to be seen."
"FUCK!!!!!!! I'm coming."
I raced out. Gave a thankful, stressed smile to the secretary and booked it. We were now 45 minutes late and I'm thanking the Lord in every breathe that I don't have high blood pressure, as it is, I have a splitting headache and I'm about to go to my most hated office. The place is filled with germs and never fail at least one of the kids walks out sick. Damn it!
I get to the wrong office and toss money at my husband, who is standing at the curb, anxiously on the look out. We switch babies because I know a cab will get there faster than I will, because I will need to find a spot. I hate parking in Brooklyn. And if you wonder why I don't just throw the kids in the car-it's because I have a 5 seater car and a 6 seater family. We don't all fit. Ain't that a bitch?
We rush to get to the appointment and I find an awesome spot two blocks away from the office. I run in and in a mad dash, I grab a file and frantically start filling out paperwork.
"Which baby are you doing?"
"Okay, I've got B." and so on etc, until all the forms were completed. We knocked them out in about 10 minutes. I'd like to say that it's because we are speed demons but really, we know these forms like the back of our hands.
"We only have one referral."
"The hell you do. I confirmed yesterday that all three were here. Check with Nelly."
Fifteen minutes later, "We found the referral. Billing would like to speak with you."
Billing? It does not bode well when billing wants to talk to you before an appointment. I walk over leaving my husband to stop the battles for cookies.
An administrator proceeds to tell me that because the kids are covered by two insurances, she has to bill one over the other and that is not the one we put on the paperwork. I'm looking at her like she has 10 heads. We're delaying the appointment because I have too much coverage for them. Lovely.
I'm being my nicest-okay well, I'm not spitting or cursing; that should count for something.
"I appreciate your position. But here's my position, it took four months to get this appointment. We are seeing the doctor. I don't have much more to suggest to you other than get it done. Are we clear? Fantastic! Thank you!"
I walked out and hoped to God that we would actually be called.
I sit in the waiting area and watch a little girl steal a cookie from the CEO. She smirked, gave her a little push and turned her back to her. I'm explaining to the child that we don't steal and looking for a mother to make sure the kid can have the cookie. No mother in sight and the girl had a real entitled attitude. Hmm. I wasn't impressed.
I walked away and left the CEO to her own devices like the other mother had done with her daughter. In the seconds that I turned, it seems the cookie was on the floor and the little girl was crying. The CEO is not one to mess with, and if the kid wasn't a little thief without parental supervision, I may have had an opportunity to say to the mom, "Be Careful. My daughter tends to rage because of her ASD." Not paying attention or really giving a shit, bully for you.
I counted to 10. I need to relax. I hear our name called. My cavalier attitude actually worked!
The kids walk in a line and get weighed. We do all the regular triage stuff and then start walking down the hallway to the room.
I admit, my children are a sight. They are pretty much the same height and the same age. People cannot help but stop and stare.
I see a line of doctors watching us walk. My skin is crawling. They all look so excited to see us and I begin to feel like a specimen rather than a patient. They are looking at us the way I look when I see a huge non-returnable sale or my husband when he hears a perfect radio break. The doctors are having a work-gasm. There are four autistics with the same genetics walking into their office and they get to study their DNA. OMG! They can barely contain their excitement. If I could draw a picture, it would be about 12 doctors surrounding me with fangs like wolves, saliva dripping from their mouths. As you can tell, I was in a very POSITIVE mood.
The kids were being rambunctious. Every doctor looked at them lovingly, dissecting every little move they made.
The appointment lasted about three hours.
We tried our best to keep them occupied but I doubt that patient bed will ever really ever lose the orange crayon. We're in the mist of potty training so that really took the excitement level up another notch. We plied them with juice to keep them occupied- in hindsight-not our most brilliant plan.
Finally, the head geneticist comes in. My hands are shaking at this point. I don't want to know what he thinks; I want to get out of here.
He begins speaking.
"We're going to run a battery of tests. I think there may be eye issues. I want everyone to see the following specialists: cardio, ga-"
The CEO, being held in my husband's arms, lost control of her bladder. The urine splashed all over the floor, my husband, me, the doctor.
We barely skipped a beat. Consoling her for the accident and stripping her clothes off and throwing on the extra set in less than a minute. We continued to talk to the doctor and listen to everything he said. He focused on me, "Let me see your ears. I'm going to examine you."
Why am I getting examined? He checked my ears, neck, eyes and back. My hands are shaking again and I'm sweating. "What are you looking at?" giggling nervously.
"Here is my theory. I believe there is a genetic mutation. Your sons tests have come back normal. This may not explain the Autism but it may explain your health and them. We will check Bugabuga. More than likely you have the same mutation as they have but it is not very severe for you. If you have it, which I believe you do, there is a 50-50% chance that your children have it. We'll do your blood tests after Bugabuga's test are complete."
And there it was.