Tuesday, April 9, 2013

"When the rain washes you clean, you know..."

Two weeks after after the evaluation, Pete and I went back alone to discuss the results with the team at CHOP.

I was feeling the same jumble of nervous energy that I felt before- I got dressed in cute clothes and put on makeup, fussing over my appearance as if that might change the results. And in my heart, I knew what the results were.

Pete and I chatted as we drove over the bridge into Philly. Many times, if there is something we are both anxious about we end up picking fights with each other out of stress, but this time we companionably talked as we parked and walked into the building, stopping quickly to grab drinks (Diet Coke for me, Vitamin water for Pete) from the WaWa in the same building. I had not been able to really eat for days due to a combination of horrific stomach bug and my growing nervousness about our appointment, but in that moment my whole being was crying out for a Diet Coke!

A few minutes later, we were in the same room that PJ's exam had been in except that this time, both Monica (the nurse practitioner) and Dr. L (the pediatrician) were on our side of the rooms two-way mirror. After some small talk about how they remember each of the many patients they see (PJ was "the blonde boy with the father who is an RN") we got to it.

I will never forget how Dr. L started off the conversation because it truly made me laugh out loud, even though she meant it in all sincerity.

"You son, " she said, "is a little...different". Her face changed and she spluttered "I mean, not in a bad way, of course..." but I was already cracking up. Yes, that Boy of mine? He is different!

Dr. L went on to explain that it wasn't a personality assessment, true as it might be. In most cases, they are able to determine diagnosis right after the exam- most children seem to lean profoundly towards meeting the criteria in a definitive way or not. PJ was a tougher case, and the tapes of his exam had been played for the entire team with much discussion about what was to be determined. There had been some debate but, in the end, the team agreed that the diagnosis of autism was the correct one for PJ.

Pete and I glanced at each other- we weren't surprised at all so it was not difficult to face the news in that moment. I said, "Okay. So what's next?" with a composure that surprised me.

Monica and Dr. L planned out the next few months- continuation of PJ's current therapies, the addition of speech and behavioral therapy, and an appointment with an audiologist to rule out hearing issues. I asked about how this diagnosis should/would determine our decision to have another child, and Monica said "You know, Dr. Z in our Genetics department is wonderful, and she will have better answers and guidance for you. " I was happy to hear this- we had an appointment to see her in June and although we already had some glowing reviews, it was comforting to hear them from another professional.

As we spoke, I was so thankful for the fact that this conversation was being held with such a positive tone. The diagnosis was not easy to hear, but Dr. L and Monica were able to convey to us that there was no reason to see anything but a bright, safe, future, full of all of our Boy's potential. I found myself smiling, laughing, feeling so comfortable with the plans being laid out for our son. They didn't just see autism- they saw every bit of our funny, sweet Boy and we were so grateful for that.

Pete and I were plied with the obligatory piles of autism paperwork- a large directory of service providers for the recommended therapies, fliers about lectures and support groups, pamphlets about autism research currently being done at CHOP (another top reason we went with them), etc. Monica remembered something else she wanted to give us and stepped out of the room to get it, leaving Pete and I alone in the little room (Dr. L had said her goodbyes a few minutes before to see her next patient).

Pete turned to me and said those three little words- not "Are you hungry?" or "Got any gum?" or even "I love you." He said the three little words guaranteed to make me crumple:

"Are you okay?"

AWWWWW, FOR CHRIST'S SAKE! REALLY??????

My eyes, predictably, filled with tears just in time for Monica to walk back in the room. Crap. There went my carefully constructed facade of having my shit together. Monica took one look at my teary face and knelt down next to me, taking one of my hands in hers, and earnestly assured me that although it is hard to learn that anything is "wrong" with your child, we were going to be okay. PJ showed so much potential and we were doing all of the right things by him. We were going to be okay. Her kindness was touching and much needed.

After a few more minutes of discussion, we said our goodbyes and Pete and I trudged through rush hour traffic to get back into New Jersey and back to our Boy. I just wanted to see his face.

We got in and I went straight for my baby, who was smiling now that his Mommy and Daddy were home! I held my arms out for a hug and PJ obliged, wrapping his small arms around my neck. It felt no different from a thousand hugs before, even though we had a conformation of this life-changing thing in our lives. His eyes were as bright as ever and his little body as alive. How stupid that I worried it would look different once we "knew".

Later that night, after PJ was in bed, I sat on the floor of our living room with my "autism binder" open and the paperwork we had received spread out before me. Putting paper into binders and making everything neat and organized is one of favorite activities in the whole world (ahemweirdo). When I was in school, going shopping for supplies was like panacea for my soul. But that night, as I shuffled through all of the information, the words started to swim before me. I leaned over until my forehead touched the carpet.

"Baby?", Pete asked, a note of concern in his voice. He got up and sat next to me, gently taking my face in his hands and lifting my head off the floor.

"Our baby..." I said, but couldn't say any more. Instead, I started to sob. After standing at the edge with a brave face on, I had finally gone ahead and jumped. I cried on my husbands shoulder and realized that we needed to say goodbye to the life was had though our son- our dreamed of, wished for son, the one I wanted so badly and didn't even know it, who healed our hearts with the news of his impending arrival- would have. I only knew what would be for the next few months- navigating doctors visits and therapies and blood draws and more of the waiting game- because it felt like the life I had already mapped out had been torn to shreds. I knew we had all of these plans, but what the hell was going to happen to us?

After a few minutes I got myself together and Pete and I lapsed into quiet, sitting together while I returned to organizing papers and Pete returned to watching TV. I could tell that he was thinking about everything as much as I was. But really, how much could I allow myself to cry over things? I knew there would be hard days, and sometimes there would have to be an out-and-out fight to make sure that our Boy had every tool at his disposal to meet the potential we know he has.

It's hard to believe that night was over a year ago. At the time, I had no idea about...anything. Even though we had gone into the appointment with a pretty good idea that PJ is Autistic, I know that I was holding on, so tight, to the possibility that maybe...

It wasn't what I wanted. I don't think anybody wants to know that their child will face something that might cause them any struggle, hardship, pain or sadness. But, I also thought that I didn't want to be pregnant when I became so. I had no idea at the time that PJ was everything I wanted, and if this is part of the package, it's okay.

For the first time that night, and every night since, (and for every night as long as I am PJ's mama) before I went to bed, I took a deep breath and remembered that tomorrow, there's work to be done. And there's never been a better boss in the world.

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