Tuesday, 7 June 2011

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.


  1. I feel blessed to be the first to comment on this awesome post. Needless to say Jack is one very, very, blessed young man to have you and Holly in his life. I know there have been tough times but I also know that there are many, many wonderful memories of great experiences through the years and that is what we should dwell on. Personally I don't think it does any good to spend time talking about "father of the year" when there is a "world class mom" to love and support. You go girl. Feel the blog love drifting across the pond from NC for you, Holly & Jack. Sincerely.

  2. Kids dont come with an instruction manual and I think you are doing a pretty awesome job with balancing looking after jack and holly and looking after yourself. You are inspirational

  3. as one door closes on your bahookie, a window usually opens that you can got headfirst out of.
    I used to get really upset because i could see kids the same age as Peter doing things that he couldn't - sometimes i knew he would eventually, but it's not easy when you have family the same age and the mother rubs in how well her beloved was doing and "hey - look at Peter".
    It's a long hard journey we both walk, but i love hearing about Jack (and Holly) and i am beginning to be able to "read" some of his expressions in photos!!! It's funny really cos i know a picture paints a whole story!!!
    Lynne - you know where i am - always up for a gab or a text - just hang on in there.

  4. I hear you Lynne. I used to cry and cry when I couldn't get Smiley to take an interest in something or she just wouldn't try to acquire a new skill. She's changed very little since she was 2 years old. Acceptance certainly helped me, I just keep her entertained and we are more relaxed and have more fun now. It sounds like you are doing the same xx

  5. I can't even imagine how difficult things get for you some days. I do however KNOW that you are an excellent mom and an excellent woman. I don't know about everyone else, but for me, your "glass half full" outlook is very inspiring. I wish I could know you or someone like you in real life. But since that's not the case, I am very happy to know you in the bloggy world.

  6. You are an amazing woman. I have nothing else but the awe and wonder of what you do and how you do it.

  7. LyndyLou - I've always said that you are an inspiration to us all, even through the very tough times, and I know that there are plenty of those! It's awful that you have to fight every step of the way to get anything for Jack, and it's just so wrong. It must have been very hard for you to have to get rid of all those things that you had hoped Jack could use, and I feel for you. All I can do is to send you a hug and say that I think you are such a terrific mum!

  8. Your beautiful words and the love for your family brought tears to my eyes lovely lady.

    If all parents had your strength, perseverence and fortitude there would be a lot more wonderful children raised in this world.

    You are a special, special woman and I am honored to know you.

    Hugs my friend.

  9. I have only known you for a little while, but I can see here what a wonderful mother you are. Acceptance does bring peace of mind for whatever problems we face, especially when we have done all we can.

    My granddaughter has OCD and is home-schooled. She is fourteen and this is the first year she has been able to finish all her school work. She used to always quit in November. It has been hard watching her miss out on many fun things all these years and watching her suffer, but she is better this year.

  10. The dissappointments are hard to bear, but the kids never give up and neither will we :)

  11. There are no other words that I can say that I haven't already. You are an amazing woman who has endless love for both her children and smiles when it rains. If I could be 1/2 of that person I'd be blessed. You are an inspiration.

  12. Damn, lady, you are some kind of awesome. Just remember that.

  13. Reading this I started to cry I do not know how you do it, I am sure I would not be able to do if I was in your shoes........then I read a dangerous occupation for a girl with big boobs!and I start to laugh but of course my laughter went back to tears.....You are such an amazing and strong woman.

  14. I believe Odie said ALMOST all that needs to be said when he said you're a world class Mom, Lynne. I would only add that Holly is a world class sister to Jack, and Jack is a world class young man for doing the best that he possibly can.

    I, like Jo-Anne Rambling, had a good chuckle over what you wrote about a girl with big boobs.

    Best wishes to all of you.....and that includes Julie, "Looking for Blue Sky", and Belle and her family.

  15. Odie - you are so right, we have the most precious memories and hopefully lots more to come. You always say the most lovely things Odie :)
    Mynx - they should though! lol thanks from one inspirational woman to another :)
    Julie - too too true. I am sure his expression is say, will you get that damn camera outta my face!!! I know mate and I appreciate it and you.
    Looking for Blue Sky - I know, it is so hard but you keep plugging away but now the focus is on fun, fun, fun :)
    Jumble Mash - I wish I could know you in real life too but I have the next best thing my friend.
    Lizbeth - thank you.
    Thisisme - it was hard to get rid of all the things but already his room looks decluttered and it looks good so I can only be chuffed about that :)
    SkippyMom - awww Skippy, what a lovely thing to say.
    Belle - your poor Granddaughter! It is so hard to watch them struggle. OCD can be all consuming and very few people understand it. (((hugs)))
    Kellie - so so true.
    Bouncin' Barb - oh wow, thank you.
    Sunshine - Thanks :) I will try to.
    Jo-Anne Rambling - tee hee hee, I had to get a laugh in there :)
    Don - Holly and Jack are just the best, they are my inspiration. Chuckling is good for you so glad you enjoyed the reference! Thanks for the lovely wishes :)

  16. What an amazing post! I feel blessed to know you!


Laughter is the best medicine and it's free. Thanks for visiting my blog and I look forward to hearing from you.

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