As we were told would occur, Freya has continued to ride the emotional rollercoaster over the last couple of days. The reality is, that despite pre-surgery counselling, an 11 year old child has limited capacity to understand and rationalise the long term effects of hemispherectomy surgery. An 11 year old brain operates almost exclusively in the here and now.
For Freya, the loss of movement in her arm and hand and the loss of her peripheral vision in both eyes are all causing her distress. She is anxious and easily startled by movement and noises in her periphery that she can no longer see. Apparently children do adapt to this visual deficit quite quickly, but in the context of her total loss of ability to self-care and function since the surgery, it is understandably an additional reason for sadness.
It's such a long hard road, and I am so sad that Freya is sad. It is part and parcel of the long hard road Freya must travel but I know she has the resilience and determination to be healthy and happy again.
ReplyDeleteWe are all with you Freya, as you go. You are the sweetest most precious little girl and you must always remember how amazing you are.
Lots of love from Auntie Patricia xxx
hi Freya,
ReplyDeleteI'm sad if your sad, I hope you cheer up soon!
I can't wait to visit you, I hope your well enough. everyone at school is really missing you, especially me! hope you feel better soon
Edie
Dear Freya, Please check out both our blogs. Abby had her surgery at 3, so our rehab is now 5 years old, but Freya will want to rehab and hers may be faster. dawsondiaries.blogspot.com and rasmussenssyndrome.blogspot.com
ReplyDeleteAbby swims, is in girl scouts, plays tennis, etc. Videos are on my blogs. Dawsondiaries is about our daily life with the girls, and point out to her that a lot of the time Abby's posts AREN'T about what she is doing that is related to her Rasmussens, but just regular daily things. Also, please tell Freya that Robert (dear hemi friend) had his right hemi when he was 11, and has finished his bachelor's degree at the University and now is working on his Master's degree in social work.
We want you to know that life is for living, and yes you'll have to work very hard, but YOU CAN DO IT. You will walk again, and you won't stop there - Abby walks, runs, climbs, jumps, twirls, and skips. Jessie can ride her bike without training wheels. Jodi can do a ponytail with one hand. Christina can drive a car and also finished her Master's degree in Speech therapy so she can help children. Freya honey, its up to you.
Know that the Dawsons in South Carolina are praying for you, and are looking forward to the updates of every single milestone. Eventually you'll realize that most of the day has gone by and you haven't thought about things you can't do, but just the regular everyday things that you've always done.
Praying for you sweetie. Kelly and Abby
Dear Carolyn and Anthony - and hello Freya . I have finally managed to join the blog - as you had sent it to my work Carolyn I knew that was not the place for me to read such an emotional story and every time I came home to do so I realised I did not have the address. I have to catch up on the reading but pleased to see Freya's really robust progress given what a hit her brain has had. Aoife sends you a big huggle and a smile.love veronica
ReplyDeleteFear Freya,
ReplyDeleteYou will overcome the obstacles, just think how well you have managed in the last few years. Once you can are able to stand and walk you will be able to do things that you can't do at the moment, and you WILL be able to go to the bathroom by yourself.
Love Grandma. xxxx