i know that it will break your heart the way things are
April 23, 2007 / 07:27 PM
Boy, did we need a vacation. For almost a solid week I just enjoyed my family. I remembered how fortunate I am to have a husband who loves me, a daughter with a smile that crinkles her whole face and the means to get out of town to watch baseball and explore a new city and I did not cry even once. After our good evaluation I ignored all the scary "what ifs?" in my head and just concentrated on the moment. That’s hard for me. And we’re not on vacation any more.
Today, instead of the daunting task of heading back to work we faced the even more daunting proposal of taking Josie to see a Medical Geneticist. I warned Tim before we went that we would have to have a thick skin during the evaluation. Geneticists are trained to find badness, and lump physical findings into syndromes, and it is their job to say mean things about babies. I was prepared for the ear measuring and the nose appraising. I wasn’t prepared to take it so personal.
As a quick overview, we took Josie to see genetics to help find a reason for her hypotonia. We already are seeing a neurologist to look for brain causes, and geneticists are the people who look for connective tissue disorders and errors of metabolism. The doctor today was concerned enough about her findings to order six tubes of blood and an echocardiogram. I know she was being conservative and thorough, but I didn’t expect to be so hurt by her ordering tests to evaluate for syndromes that I know that it is terribly unlikely that she has. It turns out, I was the one who needed a thick skin. Tim was fine.
Our problem is that Tim and I have the same goal- that Josie is healthy and happy. We just have different approaches. Tim is in the Test! Test! Test! camp. I’m the exact opposite, because in my experience shotgun medical testing just tends to turn up random findings that complicate the picture and lead to more tests and more worry. For instance, by ordering an echocardiogram there is a very small chance we will find that her heart murmur is part of an undiagnosed connective tissue disorder and a very large chance that it is just a regular old benign murmur. However, there is also a fair chance that the echo will show some small, not really concerning, abnormality that we will have to keep and eye on and worry about forever. It’s a cycle I didn’t want to start.
I’m back to feeling down, and scared and overwhelmed by the whole process. In the next month or so, Josie has appointments for orthotic casting, Neurology and Genetics follow-up, echocardiogram, her regular pediatrician (for her ear infection that has not cleared after two months of antibiotics) and weekly physical therapy. The bloodwork to rule out Terrifying Syndrome(s) won’t be back for weeks. Possibly being a doctor myself makes this harder, because I see the whole sequence playing out more clearly, and I also think it likely that other physicians are also treating my daughter more aggressively and conservatively because of her doctor mother. Or maybe it makes it easier, because I understand the process of it all better. I don’t know. I just know I’m worried about Josie almost every second of the day.
Speaking of thick skins, at one point during today’s appointment the doctor looked at me and said with genuine concern, "You’re not pregnant now are you?" It was obvious that the prospect of the two of us bringing another imperfect child into the world terrified her, and the words felt like a slap in the face. I’d have another Josie in a minute, so we’ll just have to disagree on that one.
Posted by: Suzie
File under: josie girl
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Comments
Wow. Yeah, I think you being a doctor makes it that much harder to go through it all. On the other hand, I don't think anything could be better for Josie than to have a mom who really knows what's what.
Posted by Tracy
April 23, 2007 08:56 PM
Perhaps because you are a doctor they forget to say things "nicely"...
I'd want to have a Josie in a minute too...
Posted by daisy
April 23, 2007 09:35 PM
Oh Suzie ~ BIG, Big, hugs to you.
That BAD, bad doctor for asking you such a question!! Oooh, that makes me mad to hear she asked you about being pregnant now. This is before she even knows her own testing results? BAD, bad doctor!
I believe with all my heart that Miss Josie will be just fine and dandy. She, and you will be in my daily prayers.
Posted by Trace
April 23, 2007 09:57 PM
Um, just a P.S. Did anything happen to arrive on your doorstep whilst you were taking your Awesome Canada Vacation? Because if not, I will have to go and kill the entire post office.
Posted by statia
April 23, 2007 10:34 PM
Don't freak out, woman!
(Yeah, right, like that helps.)
Well, I think Josie's got a nice balanced set of parents to give each other different perspectives. So, unless you're going around photoshopping all those pictures of the kid to make her look so damned cute and happy, you must be doing something right.
And that other doc needs some serious etiquette lessons...
Posted by Solonor
April 23, 2007 11:28 PM
I suspect if I were the mother, and, you were the doctor, you'd be telling me to take it one day at a time.
Now, I seriously suck at that, but, I'm learning. One day, sometimes one hour at a time is all we can do. Don't let the "what ifs" get away from you.
Knowing what is going on is both harder, and, easier all at the same time. When you do find something out, you'll be able to make a plan. I always feel better with a plan.
Please keep us posted where appropriate, we're thinking of you all.
Posted by Busy Mom
April 24, 2007 12:29 AM
I read that "you're not pregnant now are you?" completely differently. I thought she was teasing you for (understandably) freaking out. Pregnant women being stereotypically freakoutable.
I think another Josie would be nice. The world could certainly use more Josies.
Posted by Tanya
April 24, 2007 11:32 AM
Oof, poor Josie. And I can well imagine that you have a harder time with this because you're a doctor. Good luck with everything.
Posted by maggie
April 25, 2007 01:51 PM
I just stumbled upon your blog today...You may know this already being a Dr, but just in case...Geneticists all are autistic. By that I mean they seem to have no social skills what so ever or even the ability to empathize at all EVER. I have no doubt that if you had told her that you were pregnant, that she would have advised you to terminate without batting an eye and finished with "have a nice day" I don't think it's distance so much as a certian personality type specializes in genetics. Really take everything they say that is not clinical fact with a grain of salt. Especially predictions in the case of rare disorders. Don't let them get you down.
Posted by Linda
April 26, 2007 12:16 AM
Lots of testing can be overwhelming, some of the doctors do turn out to be idiots but some can be fairly helpful.
Because my daughter had severe ADHD, she went through the whole neuropsych work-up fairly early in her school career. If genetics testing had been available then, I would have asked for that, too. I have to admit, I'm on Tim's side on this - test-test-test. What are the exact pieces that make up the whole?
Any toddler who sits through a baseball game without loosing it is doing pretty well in my book!
Posted by Laurie Mann
April 26, 2007 01:52 PM
Good luck and best wishes to you and your family. I hope everything turns out well. Josie is a beautiful girl. As someone who is in the conception process, I understand your fear. Being adopted w/ no known history, over 35, and someone who has had "severe girly issues" all her life, the doc wasn't all sunshine and roses. She gave me 6 months to conceive with the disclaimer of "I want this test and this test and if you don't get pregnant, this test." I felt horrible immediately after I left.
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