As has been the norm over the last 2 + years, this week has been a classic roller coaster ride of emotions. Anouk herself is just rolling with the punches & getting on with life but Catherine & I have been struggling.
Anouk has been complaining of feeling dizzy when she lays down on her pillow at night so as a result we have been propping her up on 3 pillows which has been good for her head but not the most comfortable sleeping position. She has been waking up every night this week complaining of everything under the sun & not wanting to go back to sleep at all! In terms of the walking up we feel that is behavioural but the dizziness is most likely Tumour activity. On the weekend we are going to start a 5 day course of Steroids which will help reduce swelling around the Tumour & that may, for the moment, help the Stability & Dizziness...or it may not!
On Tuesday morning It was back to school & on the way out the door Anouk had to steady herself on the walls as she was walking out the door. That was hard to see because it was very real & in your face. So that set the tone for the rest of the day... shit & we felt & are feeling very sad.
At school Anouk has been using a walking aid which she calls...Mrs Wonder Wheels! The kids have been decorating it & they play trains walking behind her. Anouk doesn't seem to be bothered using it & it appears she is more unsteady in the mornings than the afternoons. She has help in the classroom everyday this week from Grandma & Sharon & the school has been able to secure some funding which will allow Anouk to have support all day at school. This support means that Anouk's class teacher wont have to worry about Anouk's stability & it will help extend the time she can stay at school which she loves going to. Her school have been very supportive through this whole process & we thank them a great deal.
The sadness we are feeling more & more at the moment is not so much about what is going on right now but what wont be going on in the the future. Anouk is a kind & bright girl who would give so much to so many.
You are so right, she is, as Catherine once said to me, "...delicious!". Love G x
ReplyDeleteWords fail us guys.....we can only begin to imagine the heartbreak. We want to let you know we're still thinking of you and following Anouk's blog. It's a wonderful record and we're full of admiration for you and your lovely girls.
ReplyDeleteLots of love from the Dolences xo xo xo xo