M r I

Tomorrow is the day of Hannah's mri . I'm not looking forward to it. Not a fan of hospitals. Tonight I have a headache and a daughter in tears because she doesn't want to miss school - she tells me she needs to learn. I wish these blips weren't there for her to deal with.

Tomorrow will be difficult for her. She'll work hard to understand what the adults want. She'll be brave when they place the canular and a bit scared when they take her into the room with the machine and ask her to ly on the table. She'll struggle to climb up and be awkward in trying to lay herself down but she won't give up. She'll laugh at the headphones designed to dull the noise of the machine and startle when the noise starts for real. She'll enjoy lying there watching a DVD but struggle to lay still for 45 minutes. 

I'm hoping she pulls it off though cos this way is preferable to needing a general anaesthetic for the procedure. After this one we should be able to go straight home.

Wish us well - I'm feeling nervous.

Cranky

I have to say that I'm feeling anger right now. White hot if I let it but I'm tamping it down, as best I can. Maybe smouldering red hot coals.

A diagnosis of Down syndrome might bring fear and unknowns and 'chronic sorrows' but it also brings so much spectacular joyousness.

Just today my beautiful girl brought our family together with charm and grace. She had spent the better part of last week planning a celebration for Boo - the monsters inc character she cuddles to sleep every night.

She allocated tasks in the preparation for all of us. Her father was on cupcake duty duty with her. She had explicit diagrams to help with the shopping list:

It involved 6 eggs, flower, milk, limes, rocket, chocolate, and rice etc. Her brother was on bed making duties and I was to decorate the house.

On a lazy Sunday where we each did our own thing she brought us together - because her task was to perform a dance to Somewhere over the Rainbow for Boo followed by afternoon tea featuring the lemon muffins she'd made earlier in the day with her father.

So yes when I think of Down syndrome I have to smile. That girl, including her extra chromosome brings so much joy to our world. There are so many wonderful things about my daughter that may or may not be partially attributed to the fact that at her core she is both the same and so different.

But on Friday a paediatric rheumatologist confirmed that she has juvenile arthritis. I have to book her in for an mri and the anti inflammatory drugs have started.

I'm furious. This isn't a syndrome to catch us by surprise and them hold us close in a loving embrace. This f@@##er is just about pain and damage and I don't like it one little bit. No pluses or bonuses. It is a disease. It is about 'suffering'. It is nothing like Down syndrome.

So lucky this girl is our guide as our journey takes this difficult side road....for she is mighty indeed. (But I think I'll be calling in favours from our 'team' - I'm feeling rather overwhelmed at the moment).