A few weeks back, Little Person
got her label received her official diagnosis.
My reaction went a bit like this:
Day 1: It’s okay, it’s a label. This is what we wanted. It’ll be fine. It doesn’t change anything.
Day 2: I didn’t want this label! She was supposed to have the other, not so bad, but more tricky to diagnose label. I can’t do this!
Day 3: Maybe, if I blog about it, I will feel better. But if I blog about it, I can’t unblog about it.
Day 4: I don’t want to blog about it. I don’t want to read about it. I don’t want to know about it.
Day 5: But she’s not this label. She’s not just this diagnosis. She’ll be alright.
Day 6: If one more person tells me she’ll be alright I’m going to scream! She’ll not be alright. She has the label for a reason. She’s different. She will always be different.
Day 7: I don’t know what to do!
Day 8: It’s okay. We’ll be fine. One day at a time.
Day 9: I can’t keep doing this every day for the rest of my life. Somebody tell me what to do!
Safe to say, I felt conflicted.
It was a roller-coaster ride. I deliberately didn’t write about it at the time, because on the good days, I didn’t want to think about it too much, and on the bad days – well, on the bad days, I couldn’t write at all. End of.
It hasn’t been that long, this living with the label, but I have to say, overall it has been helpful. Liberating (as the title suggests). Because it’s given us perspective. We understand we are in it for the long haul, that the reason we feel so tired and helpless is because … we were tired and helpless.
And I was scared of the label. Because I was scared that the label was all that people would ever see of Little Person. I didn’t want her to go through the same struggles that I went through with my epilepsy. I didn’t want her to lose her identity to a condition. Because I was right – she’s not her label. She’s so much more than that label.
And I didn’t know what having that label would do. In my experience, labels have been bad. They’ve been about trying to squeeze you into a box, or kick you out the door, sizing you up to decide if you fit or don’t fit (bad choice of words for an epileptic, but there you go).
Little Person’s label is different. So far.
So far, it’s enable open communication about her needs.
So far, it’s empowered our parenting – we can make better parenting decisions because we are better informed.
So far, it’s helped us understand her behaviour better, which means she’s been happier, and more receptive.