Erik Quinn: The Heart of a Family: Four-Year Visit

Thursday, January 22, 2009

Four-Year Visit

I took Erik to the doctor today.

An adorably chubby girl with curly blond hair sprinted up to us as we sat in a quiet corner of the waiting room, only to tease us both by tossing us smiles and running away over and over. I noted that although the waiting room was fairly quiet, I am no longer struck by how advanced other children seem in this setting. Erik keeps me entertained and draws me into him, so the rest of the world seems to disappear these days, anyway. Despite our interaction, he never failed to say hello to each person who passed. He greeted them hopefully, using his doctor's name, although I explained we would not see his physician until we were ushered inside. We amused ourselves by making up silly-sounding words like we always do, taking turns and laughing at each other when we came up with an especially good one with a jaunty pronunciation or accent. Erik's new words caused me to emit my big, ugly laugh in front of strangers. I declared Erik the winner of our game.

The nurse called Erik's name, and we were led through the frosted glass door at last. Dread filled my core as we approached the area where Erik's height, weight, and blood pressure would be measured, just as it had been each time since he was a screaming, red-faced infant. I picked him up and placed him on the scale's platform, which he tolerated surprisingly well. Thirty-seven pounds. For the very first time in his life he let me back him against the wall against a crude, plastic ruler. He allowed the tab to be lowered down on his head for a measurement. Height 41.5 inches. Erik's weight is at the 50th percentile, and his height is at the 60th percentile for typical children. Not bad. Next, he was placed in my lap, and a blood pressure cuff adorned with drawings of soccer balls was affixed to his arm. By this appointment, the nurse seemed very familiar with Erik's sensitivity to noise. That was refreshing. She even let him press the button on the electronic sphygmometer. The cuff tightened, and he sat quietly. Being unfamiliar with pediatric medicine, I asked if his blood pressure was normal for a child, and the nurse assured me that it was. We then stood up and saw Dr. G in the hallway. She greeted Erik like an old friend, but a nearby baby immediately began to shriek. I said, "Uh oh," and excused us both to retreat behind the doorway of our exam room.

The room was familiar. It was decorated with a strange mix of photographs. Cheaply framed prints of lions, tigers, and leopards graced the walls, and a fluorescent light fixture above us was covered by a brightly lit photo of a handful of fighter jets streaking across a span of blue sky. Erik thought the planes were birds. He then quickly spotted the fire alarm and began obsessing over the noise it might suddenly make. Nurse Cynthia joined us once again and expressed her amazement at the progress in Erik she had witnessed after our absence of over a year. She reminded me she had cared for one other girl with WS and admitted that this patient had made a permanent impression on her. She reported that because of WS, the girl was almost emotionally overcome by the sound of other patients crying. I sometimes feel as if we are following in this family's footsteps, knowing their identity but never having met them. I told her that Erik was beginning to feel the same way about other people in distress. He is a sponge for any emotion around him. Especially mine. I made a weak attempt to smile broadly at my kid.

I brought a list of lab tests I wanted done on Erik and explained that I had not been as strict as I wished I had been about them in the past. I expressed my concerns about his calcium level now that we had him almost completely off dairy and the fact we could not supplement him because of hypercalcemia. She asked me the dreaded questions about development, and I answered almost all of them by indicating he met or exceeded the typical goals for children his age. He failed miserably on just a couple of them. I couldn't help but be awkwardly conscious of the fact he was still wearing a diaper. I'm only aware of that now because other children have now begun to make rude comments about it.

The doctor soon came in and examined Erik. She checked out his heart, lungs, eyes, mouth, and ears. When she asked to see his penis, Erik opened his mouth as wide as he could. I laughed. In the end, he allowed her to examine everything, even if he didn't know what his parts were called (after I said the word "crotch," he was on the same page).

She then asked me how I was doing. I tried not to physically recoil.

She asked how my marriage was. How my husband was doing. With all of the lists and questions about Erik I had prepared, I felt horribly raw and uncomfortable talking about ME. I fought the urge to bolt from the room. But I didn't. I put on a brave face and fought unexpected tears from nowhere. You see, nobody asks me if I'm okay anymore, and it caught me off guard. The truth is, I'm not completely okay. I never will be. Every single day is difficult, but I'm comfortable with that now. I suddenly realized what my author-friend with the disabled daughter had meant when she told me months ago that she stuffs a lot of the feelings she has about life down deep inside. I thought that was just awful at the time, as I was wearing my heart on my sleeve at that moment, but now I know that there are some things I will never "get over" and prefer to ignore. I am doing just that now. There are some things I just don't feel like talking about or thinking about now and probably never will. It just doesn't do me any good. I then told her that I had my life back. That I was 30 pounds lighter. That I had joined a support group. That I was enjoying some outside interests again. That I was not remotely interested in having another baby. She asked me what she could do for us, and I said nothing. Believe me, I would take her up on it if there was something she could do to improve things. The truth is, we're on our own. And we are doing fine.

Fine enough, anyway.

Sometimes you just have to spackle on a smile and move on.

What happened next took me by surprise. She told me that she was concerned about Erik's blood pressure. Unfortunately, the nurse had been wrong. It was just too high. We were instructed to come back in two or three weeks. I asked her about the renovascular disease that often accompanies WS. I wondered out loud if I was being paranoid but that I didn't believe we had ever gotten an accurate blood pressure measurement before with Erik's anxiety and squirming. Today he had been perfectly still. She assured me that I was the expert on WS and that paranoia was not in today's equation. She reported that it could be nothing, or things could be out of whack, like his kidneys or hormones. I admitted that because Erik was healthy, I was waiting for the other shoe to drop.

We would soon find out.

She said her goodbyes, and Erik held onto her knee and said, "You're so great." Nurse Cynthia came back into the room and asked what lab tests we wanted done. With two shots in the thigh on today's agenda, I decided being strict about labs at the moment could wait.

One thing at a time.

After I held Erik's body down as the nurse inserted the needles and he begged me to take him home, we headed out with stickers from the nurses' station in hand. I told Nurse Cynthia that holding grudges was simply impossible for Erik.

She told me, "Congratulations," referring to what she had witnessed in my child on today's visit.

And I almost welled up again.

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Blogger Leesa said...

I have read that parents of cancer patients have an unusually high divorce rate. I imagine that caring for Erik all of the time strains a relationship, strains time that other people would be re-energizing themselves.

But all I can do is imagine. Oh, and I love your writing style.

8:29 PM  
Blogger Heather said...

Not too bad, Huh? I hate it when they ask how I am doing. I never think about it, and then when they bring it up it makes me almost cry.
Hope Erik's BP is nothing to worry about.

4:54 AM  
Blogger Julie said...

I hope the blood pressure turns out to be nothing. Noah's was high yesterday, but they feel it was due to the fact that it was the only part of his echo that he lost his mind over. I mean his entire body was red. I get what you mean about not wanting to talk about yourself. I have only had one person in all of this ask me how I was. It was the caseworker through early intervention. I like her, but I am not comfortable enough to let the tears flow for her so I played it like the cool cucumber I have learned to become. "Oh we are great, it is what it is." Okay lets move on.
And you are so right, it won't change a thing. I have one friend who knows me so well, and when I am having a bad "WS" day I call her and let it out. Then I feel alot better. Oh by the way I love the "penis" part.

6:49 AM  
Blogger Noel said...

I have been in a similar situation. Abi's ped. the second time I ever saw the man...looks at Abi and says " So how is your Mom, really doing?" and then he looked at me and smiled. Totally caught me off guard and then he went into making sure I was handling it okay...I was able to hold back the tears until I made it to the car. I too am not used to be asked how I am doing...just how Abi is doing.
I hope that things are going to be okay with Erik and his BP. It is scary but something that can be controlled once you find the right combonation of medicine.

You are doing a great job as a mom and I think you have come along way emotionally too( just from reading your writing).

7:18 AM  
Blogger Katie said...

How are you?
I dont like that question, often it can be brushed off with a simple 'fine' but when it comes after a discussion about your child or too many thoughts alone the simple answer of 'fine' most people expect can be replaced with unexpected tears.
I hope the blood pressure isnt the 'other shoe', just an innocent one off thing.
thinking of you.

7:15 PM  
Blogger Laura said...

No one, after all these years, has ever asked me that. I'm not sure how, or if, I would be able to answer. I've stuffed those things so far down and deep, it's been the only way to survive.

It's great that Erik was able to tolerate the dr. visit. I'm keeping everyting crossed that Erik's high BP was just a fluke. Unfortunately, I've become well versed in ths area, so feel free to ask anything.
Love you!

4:19 AM  
Anonymous Erik's Auntie Dee~ta said...

I am hoping and trusting that Erik's blood pressure was just having an "off day" and the follow-ups will show normal readings!!!

And for the Dr asking YOU how are YOU doing was wonderful! I can't imagine going through life like some of these precious mommies and not one soul has taken the time to ask them, how are YOU doing???

BIG Hugs to all you mommies!!!
I know that I have asked you, how are you doing... but if I have not been there enough for YOU, please let me know!!!!

12:31 PM  

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