After reading this thread I felt I would ask others their opinions.
I know that some people feel that we do not need to be using a wheelchair and building up lung function to promote better health long term, but I will write Graces story first before anyone gives an opinion to paint a better picture.
Grace has been very unwell for the last 3 years really. She has always done lots of activities and exercise, she has a trampoline in the garden and she (up until the last 6 months) did swimming every week. Along with numerous trips to ball areas and dancing classes every week and we always walk to school, never go by car (not once in 6 years of school).
Graces team were baffled by her low lung function and her low sats, she was given a bronchoscopy last year and lots of other tests, checking bloods, cortisone levels, ph probe to test for reflux - you name it she had it tested. The only thing that it showed was from a CT scan the Grace has bronchiectasis and lots of mucous at the bottom of her lungs. After a lavage Graces lung function and sats improved, but she still remains the same with extreme exhaustion and 'funny episodes' the are un-explained.
Graces team, advised that she had the wheel chair for long excursions only, but at the time it was advised that we used it to take her to school just so that she could manage a full morning without being sent home by 10am. Her school week was cut and more recently we have been advised to stop extra curricular activites just so that she can manage a whole week at school. We are now in discussion to arrange home schooling Tuesday and Thursday afternoons so that Grace can get some rest if she needs it.
Bearing all this in mind, a forum member felt that we should push her to walk the long excursions and take short breaks in between and get someone to stand with her outside the shop/theathre/cinema etc, entrance whilst I looked for a parking space.
I could have blown my top at the comment, but felt that I needed to look at it from their point of view. Yes I would love it if Grace do the long excursions by taking short breaks all day, but even if that was in place I know for a fact that she would be motionless on the sofa for two days afterwards. i know that the exercise would help her lung function, but currently her lung function is what we consider from past lung function, to be good.
The other stuff, well we do all of that anyway, but sometimes when I go shopping and my husband is at work, I have no one to leave her with whilst I park,thats just a stupid obvious answer really, but its a real one.
The person also pointed out that they had quite good health whilst they were young and good lung function, and as we all know that are connected with CF, that it affects you all differently.
I don't want to be cross with this person, but to read their reply made me feel a little stupid as if I hadn't thought of those things, even though I know they are only trying to be helpful.
So this is just a request for opinions or ideas for ways for myself and Mark to look at things differently with regard to helping Grace, so far we have more or less followed exactly to the letter what Graces team have requested, even though they always consult our opinions. I would also like to add that Graces team have been generally very concerned with Graces health and we have always managed to play it down and just get on with things and that we are not pushing to get a disabled badge, just merely pointing out how confusing the system can be.
Grace is seen regularly at BCH, and the founder of the team is actually supposed to be retired, but he still keeps an eye on what was called 'special cases' to him, Grace being one of them, not good for us I know, but it just makes me wonder if we are doing the right thing for her or not.
I didn't post any of these feelings on the forum because I didn't want to cause a massive issue or upset anyone, the person that had replied to me in particular, it just made me think, and I wanted to get it out of my system, read it back and take on board anyone elses opinions to help me draw a conclusion.
Thank you if you managed to read to the bottom of the post.
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9 comments:
Hiya hunni,
I just read the post on the forum that you referred to and to be honest I think the person was just trying to be helpful. I totally understand how it could have upset you, but they are probably not familiar with all that's gone on with Grace. I find some responses on forums to be very generalised, but we all know how different things can be in real life.
It's hard as a parent to know when to push and when not to, but I think deep down we know what feels right for our own children. Now and again a comment here or there will make us question ourselves and I'll bet that's something every single one of us has been through. It's just one persons view, reflected from thier own experience, thats all it is.
Waffle over :D
You and Mark are doing a brill job, don't ever doubt that.
You always know how to say the right thing hun, and to be honest, I wasn't upset by it, but it makes you wonder if you are actually doing a good job and whats more, do we actually need a disabled badge just yet, but moreover, do some of the people that do get them deserve one?
Its stuff that you could just turn around in your head for days, so when I put it in print, it goes away.
I hope things are good for you presently.
Muchly love, Gilly xx
Said forum member was trying to be helpful but knowing Grace's history as well as I do (which is not well but better than he does) I'd say it was a nice suggestion but incorrect.
It's nothing to do with pushing her - she pushes herself hard enough, Grace needs that extra support and you are totally right to have a blue badge and a wheelchair for when she needs it.
I think his assumption was probably based on something like remembering how he was as a child and using that as a reference point. Don't read too much into it Moo, you know Grace inside out and are 100% correct in the way you handle everything and look after her.
And you know I'd be the first to say otherwise ;)
xxx
Thanks Em, I know it would be based totally on how the person was as a child,but it really highlights how hard it is to put something across in words for a desired result, hence we can't get the blue badge, we are currently awaiting the outcome of the DLA review as well and are extremely nervous that this may be turned down this time.
Gilly x
Gilly, you should have a disabled badge for you to use whenever you need to, to help Grace. I am disgusted and dumbfounded with the 'jobs worths' who dispute it and sincerely hope that they recognise a genuine case when they see it. Grrrr!
Good luck with the DLA review, you really shouldn't have to feel nervous, damn it. Grace needs lots more care than other children of her age. Do you get advice from anyone or do you fill the forms in yourself? Sometimes we can make light of things without knowing it because to you, it's just run of the mill.
Much love, always. xxx
P.S. Things are good for me thanks hunni.
Comments like those are really upsetting because each CF case is different. I understand what you mean, it's as if she was alluding to the fact that you were ignorant.
Seems like empathy and sensitivity is rare these days. I think you guys need a handicapp badge for parking. She deserves that.
Praying for Grace
Thank you Genevieve, and nice to meet you.
Gilly xx
Gilly, you are a great Mum and you treat Grace perfectly! Its obvious to anyone who knows her history and health situation that she really struggles with everyday activities and I wouldn't have any hesitation in recommending that you have a Blue Badge for her. I'm sure there are people out there who say their kids need them just to make their lives easier (e.g. to park closer etc) but this is NOT the case with you and we can all see that! The same goes for the wheelchair - if Grace needs one to be able to have a life and be able to get out and about, then that's what she needs.
I think the problem is that some people are fixated by lung function. I know first hand that lung function is not necessarily an indicator of how well you are or how symptomatic you are. CF is a funny illness and everyone needs to be treated as an individual. Thankfully I'm now under a team that recognises that!
It's easy to say "Oh exercise is good, you should make her do it" but that's just ridiculous! Of course you know that exercise is good for Grace - why else would she have spent her life doing so much ballet etc?! Would that same person tell someone on the transplant waiting list that they too should walk because its good for them? The issue isn't that Grace would walk if you didn't use the wheelchair - its that without it she can't actually go shopping a lot of the time (or that if she does she will be ill for days).
I think that person thought they were being helpful without fully understanding the situation.
Have faith in yourself, you are doing everything right! xxxx
Thank you Emmie, you always manage to say what I wanted to say, but far more eloquently and less jumbled.
I hope you are well, and many happy returns for Sunday.
Muchly love Gilly xx
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