Big Medical Tests: When kids have to be brave beyond their years

Big Medical Test - When kids need to be braver than their yearsIn early November, time came for Lily’s yearly spine and brain MRI. This test starts to stress me out months before it happens. It’s an hour and a half long (so so so long for a little kid), and each time we hope for the best (all is stable), while knowing that one of these years we will get news that she needs new surgeries.

We always have the option to sedate her for the test. However, since we know she has the potential of needing MANY sedations over the course of her life, we started having her try to do the test awake last year. The hospital thought we were nuts, but I had a feeling she could handle it… and she did! I’m pretty sure she fell asleep on her own while watching Doc McStuffins on the movie goggles, but I was just happy we made it through.

This year we ended up having to sedate her for the last 30 minutes of the test, but she was super brave and did the first hour with more grace than I’d ever expect from a 4 year old. Some of the scan sequences were nearly 10 minutes long, and it was just too hard for her to remain completely still for that entire time.

We have fallen into a certain way of handling tests like this that works well for her:

  1. Always talk about the test in a positive way.
    We never complain about the test in front of her. When we are upset or worried, she picks up on it immediately and mirrors those feelings… so we do our best to actually BE positive. When we talk about it in a more positive way it not only helps her, but it also helps us. It reminds us that we do these tests for a reason — so that we can proactively manage her health. I also want to say that we’re not perfect at this, but usually one of us (either me or my husband) is able to be calm and positive if the other is having a bit of a freak out moment. The calmer of our duo takes the lead in the conversation.
  2. Relate the test and the machines to something she understands.
    This year we explained the MRI to Lily by saying that it’s a big robot that looks like a tunnel and takes a lot of pictures of her body. We also reminded her of things she positively associates with robots, tunnels and pictures –> The friendly robot on her “Best of Elmo” video, how much she loves going through the tunnels when we drive downtown, and how Mommy takes tons of pictures of her and Ben.
  3. Don’t start preparing her for the test too soon.
    I broke this rule a bit this time and regretted it. We mentioned the test to her more than a week ahead of time and I could see her starting to worry. Knowing about it for over a week gave her too much time to think and contemplate what it would be like and what was going to happen. Some kids thrive on preparation, but she is not one of them. Last year we mentioned it the day before (in simple, positive terms), and then had the Child Life people show her what would happen on an iPad that morning after the nurse got all her vitals. That was just the right amount of prep.
  4. If she seems scared, we talk to her about it.
    We let her know it’s ok to be scared. We talk about bravery, and that being brave doesn’t mean you’re not scared… but that being brave means you keep trying even when you are scared. We talk a lot about how proud we are of her for always simply trying her best – which is all we ever expect her to do. And… we reassure her that we will be with her if she needs us.
  5. Let her choose a couple comforting items to bring with her. 
    For Lily, her nap blanket and stuffed monkey helped last year. This year we did nap stuff again, and also took a small Brave Lily pillow I made for her. Having these items gives her something familiar to hold on to.

The “Brave Lily” pillow I made for her is below. It’s very simple – just two pieces of felt cut into hearts with her name embroidered one side, and the word Brave stitched onto the other. It has flaws, which oddly I kind of like (even though I’m usually more of a perfectionist). I told her if she felt like she needed extra bravery, just give it a squeeze and know I’m sending her strong brave thoughts.

Brave Pillow - Heart with Brave on one side and Lily stitched on to the other

How do you handle big medical tests for your kids?