Why Being a Mother of a Rare Disease Kid ROCKS

March 20, 2014

1. I Can Wear Purple with a Red Hat, Anytime I Want!

Hell yes I can. When I’m pushing Finnan in his special buggy I can go out with my grey roots protruding and my moustache unwaxed. The worse I look, the more people stop and help, open doors, and lift me up steps. I like to tuck Finnan up under his little blanket, so he looks so cute that everyone melts when they see him. He outranks all the other people in terms of neediness. Crinkly old woman with a stick? Outta the way, love. Heavily pregnant? Take your chances in the road, dear. New baby in your pram? You haven’t got a clue. Yesterday I went to the park and managed to get Finnan on the roundabout. I was in an awkward, ungainly position trying to hold him on and stop me falling off. My daughter pointed out (quite loudly) that she could see my ‘massive’ pants. On the way out of the park, a local hoody held open the gate for us.

2. I Really Do Stop and Smell the Roses

This morning I overheard a conversation between two rich women. One was telling the other one about how they had split their en-suite bathroom into two. Can you imagine having an en-suite that is big enough to get two rooms out of?! Anyway, I’m not rich with money. But I’m so rich. I get to see things that other people don’t notice. I see Finnan develop like he’s going in slow motion. I listen to him making consonant sounds, which over a period of a few weeks, start to resemble a sound anyone can recognize as part of the English language. I get to marvel, I mean really marvel, at how Finnan gets around his disability, how he picks up my hand to indicate he wants me to use my hand where he can’t, how he makes humming noises to his favourite songs and how he constantly surprises me by showing understanding where I thought there was none. I can hear him now, singing along to a numbers song. It’s heavenly.

3. I’ve Got the Perfect Excuse

I don’t have to worry anymore about why I’m on this earth and why I exist. I know why I’m here and I know why I exist. I have my own mission statement written out in my mind. I have three kids to raise to the best of my ability and I have CDG awareness to raise, and I have a cure to find. Not that I think I’m going to find it, but I want to help fund the research at least. Simple. Sort of. Anything else is secondary and if it doesn’t fit into those objectives, then I’m not interested. Life is de-cluttered. I have given up on a few things because of it, but you know what? Sometimes it’s OK to give up on stuff. And also of course, Finnan gives me the perfect reason to get out of anything I don’t want to do. Some horrible little seven year old’s birthday party this weekend? Oh, I’m so sorry we can’t make it. Finnan has an appointment…

4. I Get to Meet Great People

Great people not in a fun-great way but in a great-great way. People with gravity and purpose and genuine love for making the world better. Not like Nelson Mandela, like normal great people. Like doctors and researchers and CDG families. People who inspire you to do something about CDG. And others like teachers, neighbors and lollipop ladies. People who work to make Finnan’s life better or who reach out just to say hi. One smile from Finnan and we end up with a barrage of questions about him from random strangers. Not that I mind (most of the time), and if I do mind, I can use point 3 above to get around the situation. Greatest person I’ve ever met since I’ve had Finnan? My husband. Never realized how truly awesome he could be.

5. I Can Throw Tomatoes

As an underdog, I really am able to complain about whatever I like on Finnan’s behalf. And don’t you guys know it! I have unfortunately developed a rather big mouth. Well come on, disabled kid, gay brother, immigrant husband… not much choice. I just wish I had more time to be an activist for them all. So I’m throwing tomatoes but only little ones, and they are not making much of a stain. I only complain locally but I guess that means everyone who has an interest in anything to do with Finnan knows I’m not going to give them an easy ride. I can be quite rude. And I don’t feel bad about it after!

So there you go. Being Finnan’s mom is brilliant.


Written by Finnan’s mom, Julia Boonnak.

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