Friday, April 5, 2013

"Mr. Telephone Man, there's something wrong with my line..."

Waiting for the call that we had an appointment with the developmental specialist at Children’s Hospital of Philadelphia was both effortless and horrible. It wasn’t something that consumed our thoughts all the time- day-to-day things still continued to go on in the same fashion. With the exception of the start of therapy from Early Intervention, our days were very much the same. There were play dates with dear friends, outings to local fun spots, and dinners with family. Halloween came and went (PJ was Super Grover!), Thanksgiving passed, PJ’s 2nd birthday was celebrated with great joy!


Before all of that, in early October, we received a letter that all of our information and paperwork had been received by the Center for Childhood Development at CHOP- the one we'd been waiting and hoping for. The letter stated that we could expect a call in November or December to make an appointment in January or February, a full six months after we started the intake process in August. The waiting game was, officially, in full swing.

Wheeeee.

As I said, our daily life went on as usual. We had begun therapy two to three times a week for PJ (Developmental Integration, Physical and Occupational Therapy, with Speech Therapy added a few months later) and were fighting…something. Without a diagnosis, we had no idea what. What we did know was that PJ wasn’t talking and his motor skills were lacking (to say nothing of all the other "red flags" that had been hoisted at his evaluation for Early Intervention), so we steadfastly worked on improving his skills.

At the start, therapy was difficult. PJ was resistant, and he wasn’t willing or able to focus on the activities. The first six or so weeks, especially, were like physical blows to my heart. I had hoped that PJ would meet each task with ease and he just…wasn’t. He wasn’t and without the opportunity to speak to a physician who specialized in developmental disorders, we didn’t know why. Or, well, we had the excuse that we didn’t officially know why.

After about two months, PJ became used to therapy and was able to focus enough to learn from the tasks at hand. Each week saw improvements, and each week saw no calls to set up an appointment with the Developmental Pediatrician. Finally, it was a few days before Christmas, and I called the office to see if I could get a bead on where we were in line. I hoped that perhaps I could get a more solid estimate on when I could expect a call and with that news, be able to relax and enjoy the holidays.

I was hesitant to call- I could only imagine how many parents called each day, frustrated and irate by the wait. But I wanted to check in, so I called.

“Hi, my name is Brie. My son, Peter, is on the list for an appointment with your department. Our letter said we could expect a call in December, but with it being so close to the holidays I wanted to find out if perhaps we should expect it after the New Year?”

Gah. I felt like such an ass. I expected a sigh, but instead, the woman I was speaking to asked me a few questions and then put me on hold. After a few minutes, she returned to the line.

“Okay, I want you to call this person at (phone number). She will be expecting your call, I just spoke to her. She said to give her a few minutes and if you get her voicemail, she will get back to you as soon as she’s finished the project she’s working on now. If she hasn’t returned your call after an hour, you call me back and I’ll get you guys connected.”

I thank her for her help, haltingly explaining how difficult the wait had been and how even the smallest kindness meant so much.

“Oh, honey, ” she said. “You are very welcome. I’m a mother, too, and no mother should have this on her heart, especially during the holidays.”

Pete looked at my quizzically as my face crumpled. I couldn’t help myself- I started to cry. It was such a small thing but her words we filled with real, honest kindness and I felt it to the core of my little broken mama heart. I stumbled through another round of awkward thanks before ending the call. Sure enough, not twenty minutes later, we had an appointment for January 26th, 2012.

(I feel like I should add that we did not “butt” ahead of anyone in line. I asked a million times before the phone call ended because after going through that long wait ourselves there was no way I would subject another parents to one second of extra time. As it turned out, we would have received a call in the next day or so.)

Suddenly, the wait had an ending, and I continued to cry as I wrote it down in my date book. In a little over a month from the day I made that call, a wonderful nurse practitioner would interact with our son while a pediatrician would watch from behind a two-way mirror. We didn’t know it then, but we were a little over a month away from the start of a whole new lifetime for us.



No comments: