Tuesday, January 24, 2012

"You May Not Be So Lucky Next Time"

Argle-Bargle. I started this post on 10/04/11, and just got finished editing it. I *hoped* blogger would post it in the (date) order in which it was written, but no such luck! Oh well. It's only fitting that my crazy-mixed-up life is appropriately reflected by a crazy-mixed-up blog! LOL

Yesterday Emeline had an appointment with a geneticist at U of I Hospitals and Clinics. It was our first time meeting this man, but I wasn't too concerned about the appointment. Em's cardiologist had asked me to schedule it this summer; he said it would be helpful, so I did. (Honestly, it wasn't. We already see enough specialists for Em's specific issues; this doctor didn't tell me anything new to watch for that I didn't already know. Or that Emma hasn't already been diagnosed with.)

In the course of the visit, he examined Emma and asked me lots of questions. At one point, he asked if Emma was an only child. I told him yes. He said, "That's probably wise of you." I then told him, "Oh, it's not by choice. We would love to have more children, but sometimes wanting a child isn't enough." His next look was one of pity, and he said, "You may wish for a child that is different than this, that does not have such health concerns..." and I'm pretty sure that at that point, my instantly-red face clued him in that he had just gone TOO far. I interrupted him and said, "*THIS* child is perfect as she is. She is fearfully and wonderfully made, EXACTLY how God intended her to be, and that includes Down Syndrome, Addison's Disease, and every other health challenge she lives with." He said, "You misunderstand me. I only meant that, given your age and your already having one child with Trisomy 21, statistically, your chances are higher of having another one. And who would want to take that chance?" I said, "Well, *I* would, and my husband would, too. I think at that point he maybe was starting to see that this conversation was not going well. He continued, "But you don't understand. Your child is still young. There are many more, much harder things still ahead. And I can already see that although she is progressing well, she will never be independent. She will never live alone." Looking back, I really should have just gotten up and left the appointment then and there. Seriously.
When a doctor thinks he can know the future of a 5 year old, he is too far gone, as far as I'm concerned. Talk about having a God-complex!

At that point, I interjected, "You know, clearly we don't see eye-to-eye on this, so maybe we should just get back to discussing Emeline." He said, "That's fine, but I just want to be very sure you understand that the reality is, you may not be so lucky next time. While she has some challenges, another child with Down Syndrome may be much worse." Wow. Thanks, doc. (Nope, that title doesn't even deserve the capital D this time, as far as I'm concerned.)

I just looked at Emma, playing on the hospital table with the Polly Pockets the Child Life Specialist had brought in for her. She had surprised me when she said, as soon as we walked into the examining room, "I want Pockets." I was confused for a minute, and then remembered that when we were there for another appointment last month, that's what she had played with. One encounter, but she remembered what they were called, and wanted to play with them again. And figured, "Hey, if I ask, they might let me have them again."

This child, who has not always been the fastest to progress, even amoung her peers with Down Syndrome, has come so far. Yes, she may not have crawled until she was 18 months, or walked until she was 3 and a half. Yes, she still may not speak very clearly, but the effort is there. And the desire is there. And, given time, it will come, just as the crawling and walking did. A little slower, but you know, nobody cares anymore that she wasn't crawling at 1 or walking at 3. She's walking now. And some day she will have so much to tell these doctors who look at her and see nothing but Down Syndrome.

If only their "education" didn't get in the way of seeing what's REALLY there. A child who loves without holding back, who senses in an uncanny way when someone near her is hurting or sad, who laughs and smiles and giggles with such joy that anyone near her can't help but do the same. If only they saw HER, and not Down Syndrome.

ETA: Coming back to edit...I absolutely do not want to paint all doctors with the same broad brush stroke, and I fear this entry may have sounded that way. *THIS* particular doctor we saw that day was so condescending, so pity-full, so arrogant in the way he spoke with me; clearly, I was very upset. But I must say that we are blessed to have SO many other wonderful doctors that work with Emeline, who are positive, encouraging, understanding, and hope-full. I do not have the words to adequately say how thankful we are, and appreciative, of the excellent care they have always provided, frequently going "above and beyond" to insure that our girl is given every chance to enjoy life in spite of her health challenges. We are nothing but BLESSED.


  1. Wow. What a not nice man. I cannot fathom how he can be in the specialty that he is and make remarks like that. It really makes me sad for him that he cannot seem to see what a joy Em is. Personally, even long distance, you and Em have made a wonderful impact on my life and the life of my children.

  2. One would like to think that the reason for such insensitivity is that a person is not familiar with individuals with disabilities or their families, but this man's entire day, all day, every day, involves working with these families. How, then, can you explain it? I'm sorry to hear about this.