It's 2 years next month since Jack had his Vagus Nerve Stimulator fitted.
His seizures were quite bad at the time, 20+ a day. Within a few months of having it fitted and turned up, I noticed how the seizures were beginning to shorten. I tried not to get excited about it but secretly I was. Within the year, I was able to, with the guidance of the Neurologist, reduce some of Jack's epilepsy meds. Even with the reduction in meds, the seizures not only were shortening but they were becoming less and nearly two years on, Jack only has around 4 - 10 seizures a day. Big improvement.
|Holly and Jack in his inflatable wheel|
Up until last November, it was my hope that with the reduction in seizures, Jack would, once again be able to learn new skills but when it was explained to me that he also had another problem on Chromosome 15, that hope kinda flew out the window. In my heart I knew there had to be more to it.
|Jack and Holly in Disneyland Paris|
|Jack wearing his Captain Jack Sparrow wig|
|Jack and I on the Casey Junior ride|
I have spent the last 7 months coming to terms with this and it has been pretty damn hard. I have made baby steps and have started to sell off toys that I know he will never play with, taken down his photo board with his choosing cards on, rearranged his bedroom to make way for new equipment, contacted Occupational Therapy re a new shower room, new bed and other equipment.
I am getting more sleep at night, yet I feel emotionally exhausted. My emotions are all over the place. Anyone who has a disabled child will tell you that it is a roller coaster ride of emotions and you endlessly grieve for the loss of every little thing. I am a glass half full kind of person so I always try and see the positives in everything but there are days when I really struggle.
|Jack 2 years ago in school, wearing his protective cap when he could sit up|
|Jack playing with the tambourine|
There are days when I feel like I am walking through treacle and then other days I bound out of bed (a dangerous occupation for a girl with big boobs!). There are days when I don't feel like I do enough for him and other days when I know I have. In the end, I just muddle through, like any parent does cos that's all you can do. I wish many things. For instance, I wish his father would take Jack to his house when he comes home and spend some quality time with him, I wish I had more time and energy to play with him, I wish I didn't have to fight for every little thing that he needs.
Unfortunately, fighting for everything he needs comes with the territory and that's the thing that takes the most out of me. Looking after Jack is the easiest bit!
I am not giving up on him, I am just accepting and that frees me, takes the pressure off. I will always try to coax a smile from him, laugh when he raises his eyebrows at something I have said, chat away to him whether he likes it or not and sing to him bits of songs that pop into my head, annoy him by tickling him with lots of tactile toys, encouraging him to stroke the soft fur on our two dogs and lots of other things.
|2 years ago in school, playing interactive music|
I will continue to fill the house with music, love and laughter and if that is all I can give him, then to my mind it is more than enough.