Hope becomes Hopeless

I don't understand.  The very people who are supposed to help Emily get better seem to be doing just the opposite.

There were trips planned for this week from the unit.  Emily was really anxious, not wanting to go.  When I dropped her off yesterday a nurse took her in because she was upset.  The nurse told her that no one would force her to go.  But what did they do?  They made her go, told her she had no choice.  She sat shaking most of the time, biting her lip.  As far as the staff were concerned "she's been fine, no problems".

I had a telephone conversation on Sunday with her named nurse.  He is the person who is supposed to have weekly chats and sessions with her.  He is hardly ever on shift when Emily is there.  She has had no sessions with anyone except the medic about her medication.  This weeks trips were worrying enough, but next week they are scheduled to go to Pleasure Island.  I told her nurse that Emily wouldn't be able to cope this, that she would be petrified.  He said he'd talk to her and she didn't have to go if she really didn't want to.

Today I spoke to that nurse again and his tone was very different.  It was quite clear that he didn't actually care what I thought.  I told him Emily's symptoms were increasing again, that our evenings with her are awful.  He didn't show any concern.  I asked if she would be able to miss the Pleasure Island trip and was told no, they wanted her to go.  After all, he told me, she'd been fine on today's trip, adding that she was being a typical teenager and seemed bored.

I didn't know what to say.  I told him that if he expected her to go next week, he'd better talk to her and explain his reasons.  I knew Emily would be really upset, but what else could I do. I hoped he'd listen to her.

Emily was in her room when I got home from work this evening, Nannan was downstairs. After Nannan went home it wasn't long before she was downstairs, crying hysterically.  Why was no one helping her, she wanted to know?  No one was talking to her. No one understood how she felt. She trembled and thrashed around, sobbing.  It took a while for her to show me the cuts and scratches on her legs.  It looked like she'd repeatedly gone backwards and forwards through brambles. Whilst they weren't deep, I'd never seen so many marks on her.

I can understand why Cahms want the children to do activities, but they have given Emily no strategies for coping.  This is a child who barely leaves the house and they want her to go to a packed noisy theme park.  Give her some tools, take it slow, build up her confidence!!  Why are they doing this?  Why won't they listen to me?  I am not a neurotic mother.  I am the mother who has to pick up the pieces when she gets home. The mother who has to look at the marks her daughter makes on her skin because she can't cope. The mother who is seeing the last glimmer of hope fade away. I am the mother who hears her daughter say she can't carry on.

I may not be medically trained but I know when something is wrong.  They are trained, why can't they see it?  Why aren't they helping?

Light a candle

It's almost 4am. Once again, despite the exhaustion clawing at me, sleep will not come.

I am in a travel lodge in York, my husband is beside me and my son is almost close enough to touch. Both sleep soundly. Emily is not here, she is at home with my mum.

We should, as a family, have been spending this week at the seaside. But that was another planned holiday which fell by the wayside, like all our other plans this year.  The sadness in the eyes of my son was too much to bear. I didn't want him to resent Emily and I also thought he deserved some form of holiday, however brief. And so here we are, 2 nights in a travel lodge.

We've packed in as much as we can, our main focus has been my son. He has chosen our activities and we've done our best to have fun. He's enjoying himself, but he misses Emily and feels guilty that she is not here.  As a distraction we've bought cuddly toys and have been taking photo's of them in various locations. It's given us something else to focus on.

I've tried to make it better by acknowledging that all our tickets last for a year. I am determined we will come and use them again and next time Emily will be with us. I told her this in our phone call tonight. She cried down the phone.

Today was her last day at the unit this week. Although she gets upset at having to go still, she feels safe and supported there. Now she faces a day with just Nannan, until we get home in the early evening.  I felt guilty even thinking about doing this trip, like I'm abandoning her again, but I can't forget there is a little boy who needs his mum too.  Am I wrong?

My husband has been fantastic, when he made a vow last week to be a father to my children, he meant it. I can see my son's love for him growing each day. Emily already loves him, but my son has taken longer. This trip has been an important 'rite of passage' for my husband and son. But Emily has never been far from our thoughts.

I wonder now, how long did the candle we lit in the minster burn for her?

Drowning?

Today I am drowning.  With the Wedding and a couple of nights away, I've realised I've missed several days of my anti depressant medication.  Boy can I tell.  I feel sick with worry, I want to hide away and I want to sob in a corner.

But hiding isn't an option and sobbing must be done away from Emily.   I need to dust myself down, pick up the pieces and get on with it.

This week my 13 year old daughter was prescribed Prozac.  I can't describe the feeling that washed over me when I saw the label.  I knew medication was coming, but to see Prozac written on the bottle was something else.  They are starting her on a small dose of liquid medicine.  This allows them to check for any adverse reactions prior to giving her a full dose.  I know she needs help and I'm not against medication (I will be medicated for life, if I remember to take it) but there is a great sadness in me.  Sad that it has had to come to this.

It will be a number of weeks before we will be able to tell the effectiveness of the medication.  I hope it doesn't change Emily. I want her to get better, but I still want her to be Emily, if that makes sense?

Her body is covered in little cuts and scratches.  Since I removed all razors she tries to use kitchen knives or scissors to mark herself.  Favourite places are her hips, tops of her thighs, ankles and sometimes her arms.

My Mum stayed at my house with the children for the 2 nights I honeymooned.  She thought it would be better for Emily to be at home.  She spent the days at the 'Unit' which helped to give Mum a break.  Outside 'unit' times I was in constant contact with Emily via instant messenger on our phones.

My Husbands relatives came from Europe to celebrate our Wedding.  Some had to go home after the weekend, but his Sister and her family stayed for a week in Derbyshire.  We had arranged to go and see them yesterday.  They have two boys of a similar age to my children.

They were not surprised when we arrived at their holiday park without Emily.  She couldn't do it, poor Mum had to change her plans so that we could still have our planned day.  We are very lucky that my Mum is so kind.  She understands that my Husband rarely gets to see his family and had no hesitation in helping us to have the day with them and my son.

Later we all drove back to our house so that they could see Emily before leaving England. I'd warned them about the state of our house, but I'm sure they thought I was exaggerating. 

I was terribly ashamed when they walked in.  My house is just so untidy. Lots of things around that never seem to find a home.  Made worse by piles of things on the floor that came back from the Wedding reception and other piles of things that were used to make things for the Wedding reception.  Add to that unfinished DIY projects everywhere and I felt a total failure.

I told my husband later that I was lazy and I know this is true.  With the Wedding preparation and supporting Emily, housework has just not got done.  I made so many things myself for the Wedding that everything else got left.

So I feel I am drowning in self pity and drowning in mess and housework and it makes me feel pathetic. Once I finish this post, I'm going to get a black bin bag and get started. Oh and I'm going to take my medication.

Wedding Day

On the eve of my Wedding, my niece came to stay overnight, it was nice to hear laughter coming from my daughters bedroom, rather than crying or screaming.  My husband to be and my son slept at my Mums.

Emily came into my room several times during the night.  Her panic about getting through the day was increasing.  I hardly slept that night, the same as so many nights before.

In the morning Emily switched between panic and practical. I tried to keep her calm. I did her hair and foundation. I  set her little tasks to try and keep her busy.  She helped with the smaller bridesmaid and helped me get into my dress.  She ran errands from our house to my Mums a few houses away.

I felt that I wasn't ready, I'd just not had chance to do all the things I wanted to before I left.  So much time had gone into other things I'd felt so rushed.  When the taxi had arrived I hadn't even got my dress on.

We left the house with rows of neighbours lining the street, cameras snapping away.  Some of them know about Emily's state of mind, but not all.  It was lovely to see them.  They laughed as I locked my own front door and tried to fit the key in my little bag.

I had no flowers, I decided to do things differently.  Handbags for me and the girls instead.  How else would you carry your mobile phone??

Emily managed really well through the ceremony and photo's.  Cracks started to appear when seated at the top table. She sat between her new Step Dad and my Mum.  Between them they did their best to keep her calm.

As the day wore on, Emily found it more and more difficult.  It seemed that the arrival of the evening guests was the catalyst for her rapid deterioration.  New faces, the start of loud music in the main room were real problems for her. 

It was not long after that she came in sobbing.  She'd been barefoot in the garden and had stepped on something sharp. Blood now covered her shoe and the hem of her ivory dress.  I was the Bride, expected to mingle with my guests, but I had to be a Mum and that was more important. I cleaned her foot, but I couldn't stop her crying.  It had been the final straw, she sobbed that she wanted to go home.  I was close to sobbing too.

My evening guests were still arriving, for me, going home wasn't an option, we hadn't even done our first dance yet.   I think my wedding day came to an end around then.  It was still early, but I'd had enough.  It wasn't her fault, but it's hard to go back to 'having fun' when you know how much your daughter is hurting. 

My Mum and Dad were taking the kids home at the end of the night.  I had 2 nights in a local hotel as my honeymoon and I felt guilty about it.

Mum took over with Emily.  She desperately wanted to see our first dance and worked on keeping Emily calm enough to last until then.  My Brother in law offered to run them home as soon as our dance was over and that seemed to help.

I was so immensely grateful to all my family that night, they did all they could to keep things moving as smoothly as possible.

We did our first dance and we enjoyed it, but after, I had nothing left in me.  I moved around the tables trying to make sure I'd spoken to everyone, asking the same questions, smiling the same weary smile and barely hearing the replies. I tried to dance to the music but I was tired and I'd hardly eaten.

The clock seemed to slow down, but gradually we approached 11pm, our time to finally depart.

Later, alone in our room, I lay my head on the chest of my new husband and I sobbed.  He could have thought I was regretting our marriage, but he knew this wasn't the reason.

He told me to let it all out as he held me tight and that's exactly what I did.

.

Things are not always as they seem

Weeks one and two were hard.  Emily didn't want to go to the unit.  On some days she cried or screamed not to be left there.  But despite her protests I knew she needed to stay if she was to have any chance of starting to make a recovery. 

Regardless of her thoughts when she went in each morning, she came out at 4pm almost smiling, not because she was now free to go, but because, actually, she'd enjoyed her day.  She'd be quite chatty in the car home, telling me what the other kids had been up to, what activities they'd done and who she was starting to make friends with.  Until the new school term she will only be going three days a week, giving her a couple of extra days at home.

By the end of the second week I thought I could see a change in her.  She seemed more calm, the 'episodes' became much less frequent, I actually thought she was doing well.  Not better in such a short time, but definitely calmer and more in control.  As my Wedding day was moving ever closer, with so many things to do, Emily's new found calmness was just what I needed.

But things are most certainly not as they seem. On Monday night I remarked how well Emily was doing.  She let me in to a secret.  Her health had not improved, but her acting skills had.  Once she'd admitted that she'd been hiding her problems and that she'd done it for my sake, the flood gates opened once more.  She was trying to shield me, she could see how busy I was with work and the Wedding and was trying to give me 'a break'.  I felt like I had failed her.  It had suited me to think she was feeling better.  It was true, I did have so much to do, but I should have realised.

Since she's opened back up to me the episodes have returned and they are ferocious, longer, louder and more heart breaking than even before.

Her Medic is hoping to start medication next week.  I'd begun to think that maybe she'd be ok without it, but now I see her pain again and I see I am wrong.

I know the thought of the Wedding is adding to her pain and fears, but I can't afford to cancel it and I do believe that when she gets caught up in the day she will enjoy herself.

I hope I am not wrong about this too.