Stressed, what, who me?

Greetings from Rachel House.

I had an eventful time getting here. I drove the hour and a half to Aberdeen to pop in to see my friend Kathy who was providing us with lunch and also to give Holly a chance to see the dogs since she hadn't seen them all week.

Jack had quite a few seizures that morning so I was a bit stressed when I arrived at Kathy's. I was busy telling her that I'd forgotten Jack's bibs and feeling bad as his secretions are really bad at the moment when she said "the important thing is that you remembered Jack and you remembered his medication". That's when I looked at her in complete horror as I realised that I hadn't put them in the car!!! She thought I was joking at first but then when I was still looking horrified, the penny dropped that this was a complete disaster!

source

Not one to hang around, I grabbed her house phone, phoned my Dad, explained the situation and asked him to go to my house, pick up the meds and the bibs and meet me in Huntly which is kinda half way between Aberdeen and Elgin.

Luckily for me he was in and wasn't away gadding out and about or I would have had a 3 hour round trip as opposed to an hour. So off I went, met him, checked the meds were all there, thanked him profusely and headed off again. Thank god for my Dad.

I had enough time to grab a cup of tea and a sandwich from Kathy before continuing on our journey.

We got to Rachel House around 4.15 and we quickly got Jack settled in. He had more seizures and was feeling pretty lousy. The rest of the evening was spent answering questions again because the last time we were in, none of my answers were recorded in the care plan and they didn't have any of Jack's routine written in.  They weren't sure if it had gotten lost or just not filled in by the the people looking after him the last time and Jack's name plate that we spent hours making him has gone missing too, so we are a bit gutted by that as we'd spent so much time on it! They couldn't apologise enough!

I was still answering questions most of Tuesday and I had called the epilepsy nurse at Edinburgh Sick Kids as previously arranged re Jack's seizures so she came out for a visit. Straight away she upped both meds this time, reviewed his epilepsy protocol which still wasn't right and we discussed other drugs and other forms of rescue meds which I truly truly hope we don't have to use as it has to be given rectally and it is very very undignified, distressing and basically just awful. Fingers crossed people that the meds start to work to get us over this bad patch.

source

By 7pm I felt like escaping so I grabbed Holly and suggested we go to the cinema. She didn't need to be asked twice so we let them know where we were going and bolted out the door!

We went to see Bridesmaids and OMG it is so so funny and rude and I laughed til I cried. The best kind of therapy.  While we were there, we booked tickets for the showing of the new Harry Potter film Deathly Hallows Part 2 at a minute past midnight on the 15th July which meant we got free tickets for the showing of part 1 which was on just before hand. Woo hoo bargain or what. I am so excited. This is my birthday treat to myself as I will be 45 tomorrow (Thursday).

In my head I am still 21 and often I act even younger than that according to Holly so I am definitely not mature yet. Being grown up is soooooooo over-rated!

It's life Jim....

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.