Normal for us is leaving Chrissy on a locked ward & trusting paid strangers to be kind to her. It's letting go & accepting that a professional team does a better job than we can at home. It's acknowledging that once a week our lives will be both enriched & turned upside down by her visits. It's avoiding her self-inflicted wounds when I towel her dry after a bath. It's shaving her legs & wiping her bottom without a 2nd thought. It's reaping her gentle smiles, basking in her sunshine times & marveling over her different way of viewing the world.
Although Chrissy isn't at home full-time with us anymore, she is still a huge part of our lives. Most days it's normal for me to be writing to or speaking to one of Chrissy's doctors or other professional involved with her care. On my desk now is a letter about our Disability Living Allowance appeal. Behind me, ready for filing are documents relating to my application for Deputyship so I can legally act on Chrissy's behalf, ie sign a tenancy agreement if she moves to a rented supported living home. On the floor is a musical book for toddlers, entitled 'Bedtime Songs.' I guess an outsider looking in would be surprised to learn that it's a gift, waiting to be wrapped in pink Sleeping Beauty paper, for someone's 28th birthday.
All this has been our normal for so long, I've found #definenormal a huge challenge!
I have written this post as part of the #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/
And for #Specialsaturday. Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
A lovely blog post, I always look forward to reading them
ReplyDeleteThank you Anne. Thoroughly enjoyed reading yours for this blog challenge too :-)
DeleteLove your post! Have tried to link my blog and grab badge for " define normal" but not been very successful!
ReplyDeleteThanks Caroline! You should be able to copy & paste the html code for the badge, which is on Renata's blog. Adding your blog link is on Renata's blog page too but blogs can be temperamemtal. I'd try again or log in using firefox. I find internet explorer tricky when using my blog.
Deleteour normal...15 year old teen watching youtube in his room...- but sesame street, nursery rhymes and okie dokie!
ReplyDeleteJane, I am happy you finally got an answer of sorts - I read your book about 10 years ago when my son was five, many similarities to Chrissy (tho no epilepsy). he was diagnosed with autism at that time - and two years ago with a microdeletion 17q21.31 as the underlying cause of all his issues. he is at the lower functioning end of his deletion syndrome spectrum...has no verbal speech but uses an ipad with predictive typing on communication software to repeat his autistic phrases... I will revive my own blog.
natasha
Hi Natasha, I love it that you got in touch through my blog after reading my book all those years ago. How interesting that your son has also been found to have a microdeletion. I keep hearing stories like ours where a rare chromosome disorder is found to be the cause after years of not knowing.
ReplyDeleteWhat communication software does your son use? I'm wondering if it will help Chrissy.
Let me know if you revive your blog. I'd like to read it.
He uses Grid 2 software with grids built on the pc via grid player. iPad encased in military grade griffin case to withstand drool and drops. It has been the best hardware software combo to date . Many many good comms apps Chrissy could try predictable by therapy box if she can type at all. Netbuddy.org.uk has a good list of iPad apps incl comms apps.
DeleteHe whizzes around preset grids eg to ask for food or types sentences albeit autistic repetitive ones .
Thanks Natasha, I'll have a look at that. Chrissy can type so this could produce interesting results!
Deletei hope that chrissy enjoyed her bedtime stories...
ReplyDeleteyour life is normal - whatever that may mean - taking each day as it comes and being chrissy's mum.
thank you for sharing your story
Thanks h0peful mummy. Wise words :-)
DeleteHello. I was brought here by the define normal blog hop. I admire your strength; it takes a lot to accept that our loved ones have their needs met better elsewhere. I hope Chrissy has a fabulous birthday.
ReplyDeleteThank you PsychoJenic. This sort of acceptance is hard-won I must admit. Although most 27-year olds live independently, Chrissy still feels like a toddler to me due to her developmental age. This is one instance where I've had to let my head rule my heart.
DeleteI always feel more hopeful for the future after reading your blog, the way you have found a care plan that works for you all x
ReplyDeleteLovely to hear that my blog gives a parent of a younger child hope x
DeleteGreat post Jane. Its amazing what we take as normal isn't it and how quick we adapt to the new role
ReplyDeleteIt is Wendy - it really brings it home to you when you read the other blogs on this topic & see so many parallels. What some mums have to cope with leaves me feeling humbled, especially the life or death situations.
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