What an amazing day I've just had.  It was Tom's first day riding with the phenomenal organisation that it RDA.  For a nominal price, Tom got a riding lesson from a teacher and helped by three volunteers.  There are three other riders in his group including Jasmine who is in the same school and has Downs syndrome.

The loveliness started with a shared drive with Jasmine and her mum Sandra.  Sandra is a mum after my own heart: sensitive and sensible in the face of a more difficult life than anyone anticipated.  Jasmine is a couple of years older than Tom and small for her age.  She is enjoying school, and working at her own pace.  They will almost certainly both go to the same secondary school.

Tom and Jasmine hit it off straight away, chatting and giggling away in the back of the bus.  I've never really seen Tom make friends like that, with someone who "speaks his language".  by the time we got to the stables, they had already made plans to go to each others' houses!

Once there, Tom was so keen to meet JimBob that we had to get him a hat straight away.  One of the volunteers, Ann, then took him to the school to meet the ponies.  My little Tom was so keen that Jo the instructor called out: "Can we have JimBob please?"

Tom got on that pony as if he'd been riding all his life, and stunned all of us with the ease with which he did it.  Everyone found it difficult to believe that he has never been anywhere near a horse before.

As ever, he charmed the pants off everyone.  It was a wonderful experience to see him perched up there so straight, hands on the reins steering JimBob through the cones in a slalom...  He even did a little bit of trotting, and is going to do some up and down trotting next week - Jo promised!!!

Three chocolate buttons, a drink and some colouring later, we packed the two chums back in the bus and drove back to school with even more elated chatter in the back.  Look in the photos page for a little riding gallery!

My last post focussed on Kesi's drinking (or lack thereof).  Can I clarify to all those who know me and will want to reassure me, that if my only concern were the drinking, I would deal with my worry and let her be.

The whole picture is so terribly complicated.  It has to do with issues that are being addressed in psychotherapy.  It has to do with her basic character.  It has to do with needing attention.  It has to do with initial predisposition.  She never fed particularly well as a baby - it bothered me but I was quite able to tell myself that babies drink what they need.  It has to do with symptoms that I see.  It has to do with the fact that she discovered earlier this year that she has will power to stop eating.  It deals with identity, love, fear, anger and control.  It has a lot to do with me, with Nick, with Tom, with Zack...

But there is one simple, clear symptom that I feel we could tackle.  That would make her feel better, and might help her think better and deal with all the rest better.  That certainly couldn't hurt.

Given the knowledge in my head, I have two choices as a parent:

First is simply to let nature take its course.  Do nothing despite seeing a problem and knowing its potential outcomes.  Notice I say potential - all we are talking about here is risk assessment and risk management.  Fancy words to describe what we all do every day.  When we choose our clothes for the day, we weigh up the possibility of cold or heat, rain or snow and dress accordingly.  When our children choose to wear shorts on a snowy day, most parents will tell them to change and explain why.

So today, I could choose to stop reminding Kesia to drink while she's at home.  I could simply record what I see her drinking and ignore the headaches, dry skin, joint and muscle pains and regular stinging and itching when she wees.  Then, if she falls ill, I could take her to the doctor or the hospital.

Or..  the second choice is to do the best I can to keep her healthy and happy.  Which today would mean reminding her to drink when she gets home, and again at dinner (because her cups are very small indeed).  And I could choose to make soups, or jellies for pudding or indeed anything wiht a high liquid content.  I could choose to rub her all over with moisturising lotion, and give her some painkillers when she looks pale due to a consistent headache (which she rarely complains of until it has been hurting for quite some time).

Of course, the downside with the second choice, is that she will stay healthy longer.  That it would take some major trauma for her to become really ill, because by hook or by crook I am getting liquid into her.  And if she stays healthy longer, the initial problem does not become visible to others.  So I am relying on others to believe me, to not assume that I am a panicked mother who is so accustomed to dealing with problems that she sees them where there are none.

Trouble is, noone does believe me.  They reassure me, they tell me she is drinking, they tell me she is healthy, they tell me that there is no reason to think that she will stop eating again.  They tell me that she "needs me to worry about her".  I understand that, and I agree.  I took that into account before I asked for help.

And again, they question her honesty, my assessment.  How do I know that she is not drinking?  Well, at home in the holidays, I am with her - so simple observation.  At school I do not, but she tells me, and I know my little girl well enough to know when she is lying to me.  But professionals then look at me with disbelief - the school says she is drinking...  

Facts.

Kesia drinks on average about 200ml of liquid in a 24 hour period if not reminded.  She chooses very dry foods over wet ones, and will only add liquid to her cereal if coerced.  She will eat yoghurt, and I try to make her meals reasonably high in liquid.

Kesia is 8 years old and weighs around the 18kg mark. (A bit more I think... but you get the picture).  According to the Holliday-Segar method which calculates fluid requirements by weight, she needs 1000ml + 50 mls per kg for each kg over 10kg.  So that is 1000ml + 50 x 8ml = 1000ml + 400ml = 1400ml per day.

I cannot get her, by cajoling, asking, reminding, explaining or any other method, to drink anything close to this amount of fluid, including what fluid is in her food.

So someone, please tell me.  Should I simply stop trying?  Is it OK that I risk having to take her to hospital?

See, even now, I can't do that.  It would simply be wrong, wouldn't it?  Just to have people believe me, is it right to leave my daughter open to that risk?

Or do I carry on with the burden of being told that I am panicking too much.  Keep yelling and screaming and shouting for help until someone does hear?

I really don't know.  My instincts all overwhelmingly tell me that I must do what I think is right to keep my children healthy and happy.  Given that I cannot do this alone, and that I cannot do it simply with Nick's help, that involves asking for help.  Which inevitably ends up with me in a room feeling foolish, paranoid and misunderstood.  Which often ends up with one of my children in a serious medical or mental crisis.

Zack is home for the weekend.  Cate, bless her, picked him up along with her three boys and drove him home, for which I am more grateful than she can possibly know.  The trip seems to have gone well, and Zack was met by an ecstatic Kesia (who did say she was in equal parts nervous and excited) and a bouncy Tom.  A good evening despite forgetting Blue, and we are looking forward to a trip to Hampton Court tomorrow.
I am anxious, yes.  And trying not to be!!  I'm hopeful that the trip out will go well, and that Zack will no doubt spend much of the afternoon playing on the Wii.  As for Sunday, it will be short as I need to get him back to school for 4.30pm.
Fingers crossed!

I never thought I had abandonment issues.  I grew up for the most part itching to get out into the big wide world and make my own way in life.  And for the most part, I think I have.  Accepting help has always been difficult, never mind asking for it!  But for the most part, life has been easy enough that independence worked for me.

Last March everything I thought I was imploded.  Confident, strong, self sufficient, resourceful.  In less than half a day I became a shell of sorts.  Ironically, it took more strength and courage than I have ever needed before to allow that implosion to happen, and then to accept this new life, new me.

I still have very little idea of who I am.  Sometimes the day to day goings on of being a wife and mother of three are enough to give me a feeling of control, even a sense of accomplishment.  Most of the time I give this some thought, I feel as though I am in freefall.

So...  last March, a succession of people told me that they were there for me.. for as long as I needed them.  They were not going anywhere.

Of course, one had forgotten to mention that she was pregnant, so could in no way make that promise.  Another had to change her job - I'm happy for her, and don't resent it in the least.  Unfortunately the feeling of being left isn't diminished by that understanding.  My dear, dear friend Mark has remained in the background despite infuriating work issues... but his role disappeared.

Today, I found out that our wonderful fairy godmother Liz is leaving.  She's absolutely right - on her husband's retirement, she has the chance of six months in Lanzarote!  She's absolutely right, but I wish.. 

I'll miss her so much.

Of course, on the whole topic of religion... this pope whose policies I abhor, who has taken my name and whose birthday is altogether too close to mine for comfort has in part confirmed a long standing disquiet in my heart about religion. 

But given my upbringing.... maybe I feel abandoned by God.  Never consciously, I have to say.  It is only writing this that makes me raise the question.  I can say without a shadow of a doubt that I have had absolutely no sign of any divine intercession.  The whole footsteps in the sand thing.  No thank you.

I have carried the weight of my life with Nick, with the help of my parents and Nick's parents, with the help of some amazing people.  But at no time have I ever felt that any force was around, either helping or hindering.

So abandonment issues... I don't think so.

Do I feel abandoned and alone... I do.. I'm so sorry, but I do.

I'm battling the rights and wrongs of Tom's schooling - Nick is behind me, but i can't stop second guessing myself.  I'm worrying about Zack's weekends home, again doubting my ability to make the right decision.  As for Kesi... treading the fine line between emotional blackmail and fear of being sent away that she deals me is simply exhausting.

And I just have no idea.

Busy busy busy!!!  It's been an interesting start to the school year.  I'm living in a little teacup storm over Tom's schooling, but can't really talk about anything much just yet.  Kesi has started her psychotherapy but the nature of the process means I don't know much yet!!
I spent today at the House of Lords as a guest of the Costello conference.  Met some fantastic doctors who work in Noonan research and care, including a French doctor whose speciality is JMML - I'll be keeping in touch with her!
I also met a fellow Noonie mum, Gemma and her sweetie of a little boy.  Made some good contacts for our embryonic charity Noonan UK, and left with the spoken promise of patronage and funding!  All in all a good day's work, I say!
As for the rest... tired!!!

New week, new month, new year....
New habits...
New smiles...
New problems...

So...  The children are all now back at school. My big concern and food for thought is my little Tom, who seems increasingly out of place in mainstream school.  That's not entirely true.  He feels like the mascot.  And I'm not happy that that is a good thing for him.  So I'm on the case of looking around, making sure that this is the best place.  If not, I'll do what's needed to change it.  There is  a lot of emotional turmoil in my head.

New habits!  As you can see in my Fly Lady blog, my house is finally beginning to be in my control.  It's a good, good thing, and combined with our renewed budgeting efforts, we are happy to have some little part of our lives in hand.

Thanks to Fly Lady, I was able to hear Kesi read tonight, as well as Tom.  We then had a bit of computer time before Tom went to bed.  Kesia then did some times tables work with me (a little strop, but we got there).

Now the only trick is to go on the way I have started!!

In other news, Zack is back to the boy I love.  He will be calling home twice a week which gives us far more to talk about than a phone call every other day.  But he had a wonderful weekend, and is really pleased to be back with his friends.  Nuff said...