8:57pm. I have checked the time on my phone for what seems like the thousandth time today. I heave a sigh, and realize it is time to give up expecting that phone call. In reality, I should have given up hours ago, but sometimes I just can’t let go of that hope. The anger and disappointment is bubbling up, and, as usual, I try to swallow it.
I am waiting for a phone call from our pediatrician. We were supposed to see him this week, but as luck would have, he has some kind of scheduling conflict and needed to cancel. He actually called me, personally, to tell me, on Thursday, which I greatly appreciated. I informed him we were heading to our appointment with the developmental specialist at Bloorview, and he promised to call me the next day, so we could review what was said at the appointment, reassess her feeding plan, and address any concerns we had with him. I hung up the phone feeling hopeful and pleased that he understood our needs.
And now it is four days later, and I am filled with disappointment and resentment. I am still appreciative of everything he has done for us- he has made a lot of arrangements for Penelope and has been kind and empathetic, in ways that other doctors were not. And believe me, as a nurse, I understand how you can get caught up with sick patients and their families, and the day gets away from you. This is why my golden rule is to never promise something I may not be able to deliver. If there was even a chance that he was not going to be able to call, he should have been clear about that. Penelope is pretty stable and there is no emergency that needs to be dealt with, but there are issues that need to be addressed- that’s why we had the appointment scheduled. He offered to call, I did not ask him to. I mean, who is he, Chandler Bing- can’t end a conversation without saying, “I’ll call you!”?
When you are the parent of a child with health problems, appointments with a health care provider who is competent, caring, and trustworthy are like a beacon of hope. I am able to look forward to talking to someone who listens, who understands what our problems are, and who works with us to fix things. Being let down yet again by someone who is supposed to be helping us is completely crushing. And though this is by no means the first time I have been disappointed in our health care system, I am still unprepared. I think that part of the reason I am so upset about this is that it reminds me of the disappointment I faced on a daily basis while waiting for Penelope’s MRI to be scheduled.
Penelope was referred to Sick Kids to have an MRI done on her brain back in October, when all these problems were first coming to light. I was told to expect to hear from the hospital within a week, and hopefully to have the MRI done within a few weeks. Two weeks went by, and I heard nothing. I left messages with the MRI department, inquiring as to the status of the referral. No one returned my call. Finally, almost three weeks after the initial referral, someone answered the phone when I called. I was told, unapologetically, that Penelope’s requisition was considered elective, and would therefore not be scheduled until likely January or February. I broke down, sobbing. How was I supposed to wait MONTHS to find out if there was a problem with my baby’s brain? The clerk was immune to my distress. A few days later, I received a phone call from the nurse at the clinic there, and she was able to put us on the cancellation list. This meant that if an opening came up, we would receive a call and would probably have about 24-48 hours notice as to the appointment date. And so the tortuous waiting began. For about six weeks, I walked around with my phone virtually glued to my hand. I dropped everything to answer calls. And every day that passed where I didn’t hear from them, my hope dimmed and my anger grew. At the end of November, I finally got the call that there was a spot for her, and I was filled with relief. And of course, that relief was short-lived when we found out that the MRI did show some abnormalities. The relief was replaced with anger- why did we have to wait so long to find this out?
So here I am again- days passing, waiting for a phone call that isn’t coming. Anger and resentment building inside me, making it hard to find happiness in every day events- a coping mechanism I rely on to keep from falling apart.
Being at the mercy of the health care system is incredibly difficult. I understand that Penelope is not acutely ill at the moment, and that our doctor likely has much sicker patients that he is responsible for, and so he may not consider it a priority to call me. But to me, there is nothing more important than her care. And there is little that is more frustrating and more disappointing, than an unkept promise to be in touch.
So what do I do now? How do I prevent this anger from taking over my life? I suppose I will keep trying to contact him through the staff at his office, though I have not had success with that so far. At least calling his office gives me the illusion that I am doing something to remedy the situation. The reality is that I am completely powerless here- I have zero control over when I will hear from him. And in the meantime, I will keep writing- this is helping to reduce that ball of resentment in my chest- and I will look at Penelope’s sweet, happy face, and let the love I have for her wash away the anger- even temporarily.