F.E.A.S.T's Around The Dinner Table forum

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Faddywrite
ImMy situation is a little easier than many of you on here as my daughter is eating three good meals and snacks, although sometimes the snacks arent as good as I like. Its still v early days with fear foods which are mainly fatty fried or sweet or generally high in calories. Ive been braver the last two days and decided to make cauliflower cheese followed by toad in the hole. My d likes tjese but is scared of the cheese in the sauce and the batter. She tried to.quiz me about the amount of cheese and butter so I just said its whats in the recipe and she did eat both meals, though a bit reluctantly..But tonight she started to come out with all this stuff abkut wishing she was Spanish because their diet is much healthier, no processed food all fresh. She has seemed focused on avoiding processed food alot recently and was saying the flour and the veggie sausages in our meal are both processed. Part of the ed Im sure. At least we get to see an ed team.psychogist this week because I feel so fed up. Every time I think it will be good to have some time over the weekend to go out etc I cant avoid the ed related questions, the need to go out for extra walks, the food anxiety and its just taken over our lives. My husband doesnt seem as bothered by it as me but I am terrified by the way this has a grip even if it isnt anorexia, it is more than autism I'm sure.I cant sleep tonight which isnt like me.
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Ellenc1
Faddywrite, I know exactly how you feel, I feel blessed that we don’t have it as tough as some people on this site, but we are only in week 3 of refeeding, which dare I say is going ok!! My d has so many fear foods though, just like you said, it is anything fried, sweet or thought of as unhealthy, we have been told not to push fear foods yet and that as long as she is covering the meal plan and getting all of the food groups each day then to carry on as we are. We have the constant remarks and questions like, you won’t give me too much potato will you? Or why can’t I have so and so tonight because it covers what I need! ( sometimes I was planning on giving her a certain meal anyway, but if she asks for it I will tell her she can have it soon but not tonight!)I’m hoping that the more nutrition we can get into her, the more her mind will heal and in time will feel a little more comfortable with fear foods. My way of thinking may be completely wrong as this is such a massive learning curve for everyone. Keep positive. Thinking of you.xx
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tina72
Hi Faddywrite,
this is ALL ED talk. Try to get through it and just do not engage.
I was laughing about her idea that the spanish diet is such a healthy one! Spanish food is very fat, do you know what sausages they eat? And the enchiladas? It is so funny to see what ED tells them is true...same about "processed" food. Try not to engage in a discussion because you will lose that and just change the subject.
Tina72
Keep feeding. There is light at the end of the tunnel.
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Mcmum
Hi Faddywrite,
I know where you're at. Over the summer the UK had the best weather we've had in years but we spent most of it indoors, watching TV or eating/trying to eat with all of the reassuring and comforting and soothing that goes with that. Last night was our first night out as a family, visiting friends who don't know about the ed. We presented as a relatively "normal" family. It's taken six months to get to this point and there are still many bumps in the road and many more bigger bumps to come I'm sure but an approximation of normality will come back. Hang in there with the fear foods. We didn't have any! All food was scary and now it's more about times and amount. Crazy times x
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Faddywrite
Ellenc1 wrote:
Faddywrite, I know exactly how you feel, I feel blessed that we don’t have it as tough as some people on this site, but we are only in week 3 of refeeding, which dare I say is going ok!! My d has so many fear foods though, just like you said, it is anything fried, sweet or thought of as unhealthy, we have been told not to push fear foods yet and that as long as she is covering the meal plan and getting all of the food groups each day then to carry on as we are. We have the constant remarks and questions like, you won’t give me too much potato will you? Or why can’t I have so and so tonight because it covers what I need! ( sometimes I was planning on giving her a certain meal anyway, but if she asks for it I will tell her she can have it soon but not tonight!)I’m hoping that the more nutrition we can get into her, the more her mind will heal and in time will feel a little more comfortable with fear foods. My way of thinking may be completely wrong as this is such a massive learning curve for everyone. Keep positive. Thinking of you.xx
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Faddywrite
Thanks so much Ellenc1, I did wonder whether I am tackling fear foods too early but some of them are in the meals we used to have. I did make her eat one pudding last week (she ate it with alot of anxiety) and Im trying now not to plan meals she considers ok but just normal family meals like we had before. We havent had pizza for 11 months! She won't eat cake sweets etc apart from on the odd occasion and then is v anxious and exercises to compensate. Hoping more calorific meals will lead to gradual weight gain but going to try and give her a pudding or something shes scared off once a week too. Dont know what Camhs will say about what we are doing but I had to do something.
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tina72
You are doing the right thing, Faddywrite.
It is not normal to have no pizza for 11 months because your d is afraid of eating one. It is only pizza and at her age she should not even be thinking about that.
Normal family meals you had before ED are the target. That is where you need to get again. It took us about 6 months to empty 80 % of the fear food list and about the same time to do the rest but the target is NO FEAR FOOD LEFT. That would be normal.

Tina72
Keep feeding. There is light at the end of the tunnel.
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Torie
Faddywrite wrote:
Dont know what Camhs will say about what we are doing but I had to do something.


I don't know what they will say either, but I hope you get a sensible team.  The outdated advice ("Don't be the Food Police!" etc.) has always seemed crazy to me.  That's what I was told by D's therapist - just let her eat what she will and if she doesn't eat enough and loses too much weight, you can send her to residential treatment.

WHAT???

And what will they do in residential?  Continue to let her go downhill (as I was told to do) or require her to eat?  It made no sense to me whatsoever that I would let her go downhill until she needed residential treatment ... and then THEY would do the very thing I had been told not to do.  It made even less sense that we would send her to residential, and they would just let her continue to lose weight the same way I had been advised to do.  Either way it made no sense.

This is the crux of the problem with the old-school treatment - they tell us not to intervene until our kids are in desperate shape (and much, much harder to treat and more vulnerable to relapse).  And then when they finally do take action, they do the very things they told us NOT to do.

You are her mum.  You know what she should be eating and what she should weigh.  (Roughly.)  Don't let anyone shake your confidence. 

You're doing great.  Keep going. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Ocras68
Faddywrite, I just want to encourage you. Like you and Ellenc1, when I read what some have been suffering I feel things aren’t too bad with my daughter (aged 14, diagnosed RAN August this year). But it is still very hard. You sound like you’re doing a brilliant job.
I found with my daughter that the more calories I got into her, the more accepting she became, and ten weeks in she has stopped trying to negotiate and question everything (most of the time). I follow Eva Musby’s utterly brilliant advice - absolutely no negotiation, I am in charge, etc. It’s futile to answer questions with a “logical” answer as the ED twists everything anyway. With my daughter I just gave her the food with the quietly implied expectation that she would eat it. And stayed with her to make sure she did. And hoped to God she wouldn’t notice that her homemade waffles tasted different because they were now made with full fat milk, extra butter and a teaspoon of full fat milk powder for good measure!
There is a higher calorie version of most foods. For example, we love Yeo Valley yoghurt but Sainsbury’s Taste the Difference yoghurt contains 30-40 more calories per 100g. All those little extras add up. Granola not muesli. More oil and some cashew nuts in ostensibly “healthy”” stir fry, etc.
After a few times a fear food hopefully stops being a fear food and you can worry about the next one. Sometimes it was me that feared the particular food as much as my girl did, because I dreaded making her so horribly anxious. But then I realised that the slowly-slowly approach was prolonging the agony and delaying weight restoration, so we went all in with good big portions and a couple of fear foods a week. I do hold off though for a while if I think it will affect her eating the higher calorie stuff I’m already providing. It’s a horrible guessing game.
CAMHS made my daughter sign a contract after her initial assessment to say that she would not shut the sitting room door any more (obsessive exercise while watching tv), go for runs in the morning etc. I don’t know if this would work with your daughter, and I fully accept how lucky I am that my daughter is compliant. Hang in there.
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Faddywrite
Hi Ocras thanks so much for the encouragement. My daughter is sometimes compliant but just thinks her need to stick to a healthy plan is related to her autism and wanting to eat healthily She has just said to me why is she going to even see a psychologist as she doesnt have an ed just healthy eating.. I do think there may be asd too but the rigidith and literal interpretatiin of nhs eating advice could just be an ed instead. We are seeing the nurse on tuesday to get weighed and blood pressure checked so I hope this nurse actually pounts out that her weight is low as previously gps have just said shes doing well when she had lost or not gained! I do think though that because ny daughter likes rules signong an agreement with camhs could work really well! I just feel like Im on a different planet to everyone else at the moment, no one is aware of all the seriousness of my daughters state of mind, they just think its a minor issue with food! So at times Ithink yes it is me who has a problem.
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Faddywrite
Torie wrote:


I don't know what they will say either, but I hope you get a sensible team.  The outdated advice ("Don't be the Food Police!" etc.) has always seemed crazy to me.  That's what I was told by D's therapist - just let her eat what she will and if she doesn't eat enough and loses too much weight, you can send her to residential treatment.

WHAT???

And what will they do in residential?  Continue to let her go downhill (as I was told to do) or require her to eat?  It made no sense to me whatsoever that I would let her go downhill until she needed residential treatment ... and then THEY would do the very thing I had been told not to do.  It made even less sense that we would send her to residential, and they would just let her continue to lose weight the same way I had been advised to do.  Either way it made no sense.

This is the crux of the problem with the old-school treatment - they tell us not to intervene until our kids are in desperate shape (and much, much harder to treat and more vulnerable to relapse).  And then when they finally do take action, they do the very things they told us NOT to do.

You are her mum.  You know what she should be eating and what she should weigh.  (Roughly.)  Don't let anyone shake your confidence. 

You're doing great.  Keep going. xx

-Torie



Hi Torie yes I already had a bit of the laid back attitude from tbe senior ed team.assessorvwho saw my d for her second assessment..Hecwas lovely but at the end I asked about her bmi and my d asked if she had to gain weight..He got a calculator and said to my daughter that while she could do with gaining some it wasnt a huge amount and that there is no rush. She was 43kg and should be 50 and her bmi is 17.5 according to their height measurement which is inaccurate as it had dropped since April! Unless she could have shrunk?!! If tne psychologist says the same thing it may affect my ability to push on to gain more. She may not be dangerously low weight but her whole life is focused on food, needong to control what she eats and avoiding bad foods.
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Ocras68
Oh my goodness, faddywrite, it sounds like your medical people are making matters worse. She’s 43kg and should be 50 but he said It wasn’t a huge amount and there was no rush?! That’s almost 20% below expected weight and yet he thinks it’s ok. That sounds so wrong to me! Besides, surely eating disorders are about disordered thinking as much as low weight.

Where are you in the country? Could you ask for another assessor? Could you try to speak to the psychologist in private on the phone before they see your daughter so that you’re on the same page?
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Faddywrite
Ocras68 wrote:
Oh my goodness, faddywrite, it sounds like your medical people are making matters worse. She’s 43kg and should be 50 but he said It wasn’t a huge amount and there was no rush?! That’s almost 20% below expected weight and yet he thinks it’s ok. That sounds so wrong to me! Besides, surely eating disorders are about disordered thinking as much as low weight.

Where are you in the country? Could you ask for another assessor? Could you try to speak to the psychologist in private on the phone before they see your daughter so that you’re on the same page?


Hi Mimi yes last time I took the NICE guidelines with me expecting a fight but he did say alrhough it wasnt anorexia etc it did warrant some anxiety counsellibg. But then that went wrong because the counsellor just told my d she was doing well to eat so healrhily and do lots of exercise. So now she has been given access to the ed team specialist service which is how we get to see the psychologist this week. I dont know if I can chat to het before but maybe tbey would let me. I did chat to someone on the team about the situation and they seem to have accurate notes about my d..I am.a little mistrusting of camhs now so if it goes wrong I will still do fbt at home but my daughter may take on board what they say unfortunately.
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tina72
"My daughter is sometimes compliant but just thinks her need to stick to a healthy plan is related to her autism and wanting to eat healthily She has just said to me why is she going to even see a psychologist as she doesnt have an ed just healthy eating.."

If someone eats only special "healthy" food and has to stick to a meal plan and is losing weight by eating on her own this is an ED. "Healthy eating" is an ED. Tell her that. If she would not think about her food intake at all and just eat what is there like all the other normal kids around she would be healthy. At the moment she is sick.

And be really careful about that team. They can distroy your good work within minutes. I would talk to that consellor before I bring my d there. Alone.

Tina72
Keep feeding. There is light at the end of the tunnel.
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Faddywrite
Thanks Tina this morning my daughter has admitted she has a problem and told me all the things she wishes she could eat sometimes like cake chocolate sweets. And that she wants to be able to enjoy her birthday meal in December. I encouraged her to make a list of all the foods she cant eat at the moment and she did it. She hss also written that she wants help to be able to not worry if she has a treat day when she doesn't eat exatly enough fruit and vegetables. Planning to show this to the ed psychologist as it might help them see how shes thinking.It felt like a positive thjng to.do.
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tina72
That sounds great. And it sounds like AN. So forget all the autism thing and carry on refeeding and getting weight up first. I would bet most of the "autistic" behaviour fades with WR.
So use that list now and serve all that regularly. She wants to eat that and you can help her to fight that bully ED.

About birthday:
Tell her that you will serve her exactly what she needs for her birthday meal, not more and not less. That might calm her down. Birthday and Christmas will be a huge fear for her at the moment. I bumped a thread on this for you.
Keep feeding. There is light at the end of the tunnel.
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Torie
tina72 wrote:
And be really careful about that team. They can distroy your good work within minutes. I would talk to that consellor before I bring my d there. Alone.


Agree!!!

I'm going to delete what follows after you have read it, so please do not "quote" the following in a way that the words are repeated.  (It seems ... intrusive? for me to paste this here, from another thread.)

Anyway, here are some excerpts from someone else's journey this year.  I think it really demonstrates how problematic unhelpful "help" can be:

Aug 01 2018 Drs appointment didn't really go as I wanted it to. S went in better prepared than me I think and managed to get the dr onside quite quickly. They were chatting about the bloody olympics for goodness sake. GP listened to my concerns and list of symptoms from feed your instinct then went through each one with S who offered an explanation for each one. S then mentioned that I have food issues and he feels I'm projecting that onto him. He really did a good job, I'd be impressed if I wasn't so frightened. GP did his height, weight, pulse and blood pressure, sitting and standing and said they were all fine. He is sitting at the 4th percentile for bmi, which is apparently within the healthy range, but my concern is that he's never been on that percentile. His heart rate was 49 but doc wasn't concerned about it even though I pointed out the guidance on the print out. He kept talking about the bigger clinical picture and then started asking s what he thought about it, then asking him what he understood about the consequences of not eating, over training etc are. Of course s was able to explain all of that. I asked for a referral to a specialist and doc didn't agree, actually asked s whether he wanted to be referred. Of course s said no. Doc said as s is considered Gillick competent he is able to make the decision on his own. He then asked s if he would consent to another appointment for blood tests and an ECG "to ease mums worries". S agreed and the plan is that he will go back for blood tests and ecg on Monday and will see gp in 2 weeks for a review and possible further discussion on referral. I'm gad he's getting the tests but unhappy we have no referral. 

Aug 09 2018 S is in the hospital now. They're keeping him in so they can monitor and check his heart is ok. He was devastated to miss his swim sessions and thinks the whole affair is ludicrous. He is being referred to CAMHS as a routine case so we can expect an appointment in 4-6 weeks. Hubby and I are going to discuss and agree on a plan of action in the meantime.

Aug 23 2018  We're still waiting for our first CAMHS appointment. Trying to start things off beforehand. I hope once we get some professional support things may become a tiny bit easier.

Sept 30 2018  Today s had an ng tube inserted for the first time after refusing breakfast. ... when we see CAMHS this week I'm going to push for a proper diagnosis as we dont really have an official one yet.

22 days ago: Currently, S will eat very little. We are only getting 2-3 bites into him before we have to go via the ng. 

20 days ago: S was diagnosed with anorexia restricting type
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Faddywrite
Now having palpitations!! But I see your point..For us so far the experts havent taken things seriously.
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tina72
I think Torie did not post that to frighten you. It is just to see that this can get serious when not treated and that the "experts" are often not doing the right things. And Torie, I do not see that it is intrusive to post that, you just wanted to show how things can go quickly down the rabbot hole...

Our pediatrician send us home when my d lost more than 10 kg weight and said it is puberty and stress in school and she will eat when she gets hungry. What a joke!

So kick that ED team in their a... and be careful. Remember YOU might know more about refeeding now as they do...
Keep feeding. There is light at the end of the tunnel.
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scaredmom
Faddywrite, 
 Now take a big breath! You will get through this. I understand how overwhelming this is. The case above is quite illustrative in the gaps of care, I know. And all cases are different. For what it is worth, we had a "good" overall experience. In fact it was likely ME who really did not understand what was going on with my D at the beginning. 

Please note that you have been here awhile and you are now empowered with more knowledge. This will keep you in good stead with the "professionals". I think you have learned a lot here from the beginning until now. So please take heart. You are able to navigate this journey as you will be forearmed. I do agree with speaking to the team first about what you have done to date (ie feeding) and what your D had said to you about her fears. I know the team was not helpful to you in the past. I do think that was a while ago, wasn't it? So try to be positive, that they will really "hear you" and understand what is really happening in your home.

Please take care of yourself.
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Torie
Faddywrite, I'm really sorry to scare you.  I don't want to scare you, but I DO want to make sure you understand how the "professionals" can put our kids at risk and undermine us.  It happened to me, and to many other here.  You can do this - you WILL do this - I'm just trying to help you avoid the terrible pitfalls that might be out there.

Keep swimming.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Faddywrite
Torie wrote:
Faddywrite, I'm really sorry to scare you.  I don't want to scare you, but I DO want to make sure you understand how the "professionals" can put our kids at risk and undermine us.  It happened to me, and to many other here.  You can do this - you WILL do this - I'm just trying to help you avoid the terrible pitfalls that might be out there.

Keep swimming.  xx

-Torie



Its okay it is very useful to know about the risks etc so I appreciate you sharing other experiences. I am just feeling a bit overwhelmed at the moment. My daughter lost half a kg and I am a bit worried by that too but at least she is willing to share openly with me and camhs.
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Faddywrite
tina72 wrote:
I think Torie did not post that to frighten you. It is just to see that this can get serious when not treated and that the "experts" are often not doing the right things. And Torie, I do not see that it is intrusive to post that, you just wanted to show how things can go quickly down the rabbot hole...

Our pediatrician send us home when my d lost more than 10 kg weight and said it is puberty and stress in school and she will eat when she gets hungry. What a joke!

So kick that ED team in their a... and be careful. Remember YOU might know more about refeeding now as they do...


Hi Tina yes I really appreciate Torie sharing that experience and I am glad I have become more aware of what can happen. I am just a bit oberwhelmed and my daughter lost half a kg so not great.
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Faddywrite
Faddywrite, 
 Now take a big breath! You will get through this. I understand how overwhelming this is. The case above is quite illustrative in the gaps of care, I know. And all cases are different. For what it is worth, we had a "good" overall experience. In fact it was likely ME who really did not understand what was going on with my D at the beginning. 

Please note that you have been here awhile and you are now empowered with more knowledge. This will keep you in good stead with the "professionals". I think you have learned a lot here from the beginning until now. So please take heart. You are able to navigate this journey as you will be forearmed. I do agree with speaking to the team first about what you have done to date (ie feeding) and what your D had said to you about her fears. I know the team was not helpful to you in the past. I do think that was a while ago, wasn't it? So try to be positive, that they will really "hear you" and understand what is really happening in your home.

Please take care of yourself.
XXX[/QUOT

Hi yes I am hopeful that Camhs will really listen amd know their stuff, its just hard when twice they have said its not an ed just a bit of anxiety about food. My daughter keeps being told its really not too serious so keeps wondering how to sort it out herself. I really hope they help this time or she may not trust professionals again. Thanks for your positivity!
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Torie
Faddywrite, you are her mum, and you know what she needs to eat.  It is "just" a question of figuring out how to get there.  It is such a perplexing mystery, and such a strange, strange world that we find ourselves facing such a mystery in the first place.  A big part of the challenge is figuring out how to project confidence when in reality the world is shifting beneath our feet and it is hard to tell up from down.  We have all been there.

My d was almost exactly the same age as yours when she fell ill.  I was pretty sure she didn't tick enough boxes to count as AN, but it was clear that we needed to turn things around with her eating.  We were very lucky that we started refeeding in time so that she was always able to live at home and continue school.  It was a close call, though.

Eventually I decided it didn't matter if she had AN or not - she did have disordered eating and we needed to fix that.  That is my opinion about your d, too.   In a way, I hoped my d did have AN because then getting her weight where it needed to be might solve a lot of problems.  In the end, she was diagnosed with AN, and restoring her weight did fix most of the other stuff.  That might be your best way of resolving the ASD question: Get her weight up and see if the ASD-esque behaviors stop.  (My d, like many others here, developed ASD traits, but they resolved with wr.)

Can you tell your d you have been reading up on nutrition and you are practically an expert now?  If it would help, you could tell her it is not normal or good to cut out types of foods and actually it is much better to increase the types of foods she can eat.  Sometimes we find ourselves in situations with limited choices, and we need to be able to enjoy a meal from what is available.  Other times, we are at a celebration and it is normal and positive to be able to enjoy the party foods everyone else is having.  These are just a few of the reasons we say that all foods are good (in moderation).  

I can't remember if your d will drink a smoothie.  Many here have found smoothies a lifesaver, but if that is not an option in the Faddywrite household, there are plenty of other paths that lead to weight gain.  Soups can pack a surprising punch with the right recipes.  If you would like help brainstorming ideas, we can try to help you find some key dishes to form the backbone of a weight restoration plan.

Finally, I wonder if your d used to eat beef, pork, and chicken.  If so, I urge you to start thinking how you can work those back into the menu.  It is much easier to get the weight back on if those can be part of the framework.

Again, I think your biggest obstacle is regaining the confidence that CAMHS seems to sap every time you visit them.  You have so many things going for you!  You have a good and positive relationship with your d; you have already gotten her to eat some fear foods; the amount of weight she needs to gain is not massive; and you still have a lot of parental authority.  So you can do this!!

Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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