Thursday, May 26, 2011

Time to tell

Part of my job at work is working in our Neuromuscular clinic, there we see many young boys who have been diagnosed with Muscular Dystrophy. This dreadful disease causes a progressive deterioration of their muscles leading them to an early death. We often discuss with the families how and when to tell their child about their diagnosis; some parents handle this awful task bravely and some avoid it at all lengths leaving these smart boys to find out on their own. Sitting in on these discussions I thought about the talk I haven't had with Elizabeth.

It took a couple of weeks to initiate it and each time I thought about doing it I felt sick to my stomach and then I would remind myself that other families have to give such tragic news to their children.

One day while putting on her AFO's she asked why she and her fiance (yep still engaged to her little friend who also has CP) needed to wear them. So impromptly the discussion began; I explained how she was so tiny and fragile when she was born and how hard she fought to stay strong and come home. Then I explained just like the scars she has on her body she has one in her brain that we can't see but that scar causes her muscles to be weak and her balance to be off. I explained this is called brain damage, it won't get worse but will always cause her to have difficulties with her walking. This whole discussion I am trying not to let her see me cry as it kills me that we even have to talk about this.

Elizabeth is satisfied with what we talked about and even during breakfast blamed her brain damage for some spill she caused. She often now will ask about her other friends with CP and if they were baby birds too. For now I just reply that yes they have a scar in their brain too.


Cris and Liza said...

I can imagine how difficult this discussion must have been for you. I envision having this discussion with Ciaran and Shay often - and every time I am brought to tears just thinking of what I might say.

You did an amazing job! I love the idea of 'baby birds' - too cute!!! I will keep it in mind when the day comes that I have to have this dreaded conversation.

I Just Love You said...

i know we will have to have this discussion with rachel. children with Ds often realize they are different. this will be hard since there isn't even a "real" reason for her to have Ds. It's nothing we did and that would have to feel horrible for her to know, that nothing physical caused her issues and yet she still has them. give that girl a hug from me. she is so beautiful!

Anonymous said...

Good job, A.

abby said...

We're beginning to broach this issue with Hallie. She's seen some pictures of herself in the NICU (not the earliest ones, but ones when she was already extubated) and some from when she was home and wearing nasal cannula. She knows that she goes to the doctor more often than her friends do and she is well aware that she is in therapy (she has corrected us when we tell her that we are going to play with so-and-so and, instead, cheerfully exclaims that she is going off to therapy). Hallie's difficulties are less immediately visible and only apparent when she tries to communicate and cannot at the same level as her peers. But I know that her brain processes stuff--she just doesn't have the conversational skills to ask questions and engage at a five year old's level. So we do a bit of the asking and answering for her and hope that we are doing this justice.