Finally A Good Day For #PurpleDay
Not only was yesterday Mother's Day it was also #PurpleDay. A worldwide day to raise awareness and money for people with Epilepsy.
Since Grayson overcame the death sentence he was given last year he has been trying his absolute hardest to come back from living with so many seizures. It has not been easy as some of the damage will never correct itself.
Up until now when we leave the house at weekends or in the holidays he is barely ever awake, his sleep at night is massively lacking and unfortunately his Sensory Processing Disorder has only been heightened by the Epilepsy drug that saved his life.
So to deal with that he goes to sleep when out and about, a coping mechanism his brain has decided works best.
But yesterday for Mothers Day and Purple day he stayed awake, for nearly the whole time we were out, he sat and ate lunch with us in the cafe and then after some iPad whilst his brother and sister played in a local gardens he decided to even take a short walk out of his wheels.
I do panic the whole time he is out, especially after another head injury at school last week, but Daddy held on tight and he did brilliantly, even letting go to go and feel the leaves, something I have not seen him do for over 18 months.
It may have only lasted minutes but that was his way of making my day special and for him to say once again to Epilepsy - YOU WILL NOT WIN NOW!
Since Grayson overcame the death sentence he was given last year he has been trying his absolute hardest to come back from living with so many seizures. It has not been easy as some of the damage will never correct itself.
Up until now when we leave the house at weekends or in the holidays he is barely ever awake, his sleep at night is massively lacking and unfortunately his Sensory Processing Disorder has only been heightened by the Epilepsy drug that saved his life.
So to deal with that he goes to sleep when out and about, a coping mechanism his brain has decided works best.
But yesterday for Mothers Day and Purple day he stayed awake, for nearly the whole time we were out, he sat and ate lunch with us in the cafe and then after some iPad whilst his brother and sister played in a local gardens he decided to even take a short walk out of his wheels.
I do panic the whole time he is out, especially after another head injury at school last week, but Daddy held on tight and he did brilliantly, even letting go to go and feel the leaves, something I have not seen him do for over 18 months.
It may have only lasted minutes but that was his way of making my day special and for him to say once again to Epilepsy - YOU WILL NOT WIN NOW!
Photo Taken By Ash @ The Ideal Scenario |
Bless him, it must be so hard for all the family. I'm glad you had a good day x #ordinarymoments
ReplyDeleteThat is brilliant that he managed a short walk.
ReplyDeleteIt sounds like it was the perfect small way to make the day extra special x
ReplyDeleteThis made me so emotional. What a huge step for him. He is such a fighter and a true inspiration x
ReplyDeleteBless him Kara, he is doing so well. You must be so proud of him, I have felt so privileged to watch his progress over the years. On another note isn't his hair looking cool at the moment- what a rock star. xx
ReplyDeleteLovely that he was able to get out and walk and do things he hasn't done for a while. #livingsarrows
ReplyDelete