What’s that saying?
“When it rains it pours.”
On the Friday before last,
when Ivy was busy coming down with her superbug,
I looked at my almost seventeen year old daughter and thought she had lost more weight from the week before.
In fact, she had lost an enormous amount.
I made her get on the scales, which was my first big indication that there was something terribly wrong.
Actually, that’s not exactly true.
Maddy had been very flat for the last few months and had withdrawn from her friends
and from all of the activities that used to make her happy.
She had been exercising madly
and had other signs too that until that point had been put down to stress.
We all knew something wasn’t right
and medications were started to counteract her obvious anxiety and depression
and maybe a little bit of grief thrown in there too.
She had been very close with her grandmother
I had never seen my girl so…
so not herself.
The scales were hard for Maddy and she lay on the floor as I half carried her, half dragged her to them.
She looked frightened and she sobbed all the way,
begging me not to do it
but I needed to know what I thought I did already -
that my beautiful almost seventeen year old daughter was starving herself.
By the time we got to the bathroom I did’t need numbers
but they were devastating anyway
and at midnight on Friday night she came to me
that she had been making herself vomit for the last six months
and my whole world stopped.
How could I have not seen the signs?
How could I have not known
and now, here she was obviously very ill.
She said that it started before Christmas and was worse in times of stress
and let’s face it -
there has been a lot of that lately.
In fact, Maddy and her brothers and sisters have been in a stressful environment for the last seven years.
She has always been my anxious girl,
the girl who wants to please others,
my dependable girl, who would bend over backwards to help anyone she could,
my emotional one
and this insipid disease was how it perpetuated.
She curled up into my lap and sobbed;
“Oh dear, I’ve ruined it. I’m a bad kid”
and all I could do was hold her and rock her and tell her she was amazing,
for telling me
for being brave
for admitting it to herself,
Dave’s arms wrapped around the both of us.
Everything came out in a rush then,
and by then she was so exhausted, I wrapped her up in blankets and tucked her into bed with me
and held her all night -
she was so cold,
so shut down,
and her admission was like a wall had collapsed,
giving her permission to be everything she had been trying to keep from me (because she didn’t want to hurt me)
and I was worried she was at risk of hurting herself.
It was a long night.
I have always been of the mind that a problem shared is an easier load to carry
and so the next morning her sisters and brothers were told
and a plan worked out to get us all through the weekend.
It was tough.
Maddy was as weak as a kitten and eating anything at all, without purging was a real issue
but she did it.
We had to accompany her everywhere because she felt safer when one of us were with her
and less likely to purge when another person was there.
She said it made her accountable in some way.
On Monday we went to the GP and I pulled in every favour I could from Ivy’s team to help me.
There has to be some advantages to having more doctors in your life than anything else
and the absolute beauty of it all is that they were all very happy to refer and get advice for me.
Everything is out of wack.
her head space,
She was so dehydrated they couldn’t find a vein to take bloods
and I’ve never felt more sad or worried for Maddy as I did right then.
Both she and Ivy stayed in hospital together.
The first real problem for Maddy was the risk of re-feeding syndrome
and so I had to re – introduce food very slowly
and make sure she kept it all down.
but Maddy had said she wanted to get better
and so I pushed through everything – all the complaints and diversional behaviours
and forced her to eat
Don’t in any way underestimate things – it was forcing.
I hated (and hate) every minute of it
but as I said to Maddy, I don’t care right now what she thinks of me
my goal at the moment is to keep her alive.
We have been referred to the Mental Health Unit and to the doctor who specialises in eating disorders
but as with anything at all, unless it is urgent,
you need to wait -
hopefully psychiatric care will begin next week, as well as a dietician
and so at the moment we are doing this on our own.
We have such a very long way to go
and there is a high chance of relapse but the doctor said that finding out at six months was a good thing
and that chances of recovery are good.
It would be easy to beat up on myself and the truth is over the last two weeks I have done so
but is that really going to help Maddy?
and so we are all learning to cope with this new twist in our journey.
Obviously all of this ties in with all that we have been through over the years
and we are finding our new balance.
Hyper vigilance is my new specialty for each and every one of the kids now.
Everyone is shocked – especially Immy, who felt that she and Maddy could talk about anything
because Maddy has always been the ‘little mother’ when Ivy and I have been in the hospital
and it’s not like that now.
It can’t be like that anymore.
Last week Maddy asked that her small group of friends be told (they were wonderful about it)
and then a few days later asked me to make a general announcement to everyone -
so that people knew the facts, rather than having others talk behind her back
and her feeling worse because of it.
She’s not at school right now -
concentration is an issue and year 11 very stressful
and she still feels incredibly unsafe when she is away from me
but with help and refuelling her body
and the right medication
we are all hoping that things will improve -
This post was written with Madeline’s permission.
Family and friends have been amazing, for which I am very thankful for.
If you suspect that you or one of your people are suffering from Anorexia Nervosa or Bulimia you can get some great information from any of these sites:
Monday – terribly sick.
Tuesday – hospital.
Positive for Vancomycin Resistant Enterococcus.
A very nasty bug.
Will need a long course of IV antibiotics to get rid of it.
Wednesday – more of the same (pain,antibiotics, fluids, sleep, sleep, sleep, hydrocortisone and lots of tears)
Thursday – a whole lot better.
Stable, so gate leave for the weekend (yay).
Friday – cannula tissues.
Back to hospital for new cannula.
New cannula inserted.
IV antibiotics recommenced at home
and lots of other stuff (both good and bad) in between.
Let next week be better, please.
Last Thursday afternoon
a film crew came out to our house to interview our family for Starlight.
Earlier in the day, they had recorded two of our favourite Captains and the paed too.
We met three lovely guys
and three wonderful women
and talked about Ivy’s story and her wish.
Actually, Noah talked.
and we spent a large portion of the filming chuckling at his flamboyance.
In the end the guys had to ask us to not let Nowie monopolise the conversation.
The crew were very patient -
even when Mal gave everyone a ten minute monologue on stretch mini coopers and how that was his wish.
I’d like to say that the whole family was well behaved but that would be a lie.
The red sausage dog wore his worst diva behaviour and made all kinds of demands on the poor unsuspecting film crew.
Never trust a red sausage dog.
He didn’t cope well with the new people in the house at all
and when he was put in dog jail for nipping at the director, he protested.
Eventually, AJ (who was non plussed about being on film) took him for a walk so that everyone could get down to business.
They filmed the kids playing
and interviewed all of us together
then the pair
and then Dave and I.
and one that Dave and I have been invited to attend ( insert not so quiet squee here)
and on social media too.
At the end of it all our gorgeous friend Steph told the pair that she needed their autographs because they were now famous
and the cheeky things provided her one
which she graciously accepted.
Ivy and Noah were very chuffed indeed.
It was a great afternoon and a wonderful opportunity
but in the end the most important thing is that it will hopefully help Starlight to raise money
so that other kids like Ivy can experience the magic of a wish.
This morning she is nervous
and her behaviour reflects this.
I am too.
She knows tomorrow is infusion day -
our first without a general anaesthetic.
Our progress has been slow and so we have ended by doing an additional four to our original plan
and it has been good.
The girl has been the happiest I have ever seen her,
without the stress of infusion days
but now we are moving towards our goal of being able to do them at home again
and I am looking forward to that.
What I hope will happen, what I’m wishing for with all of my heart
is that over the last eight weeks, with all of the therapy
and the medical play
and the rest from the anxiety and worry
that we have been able to break that all consuming fight or flight response
and that Ivy will be able to once more use her amazing coping skills (and I mine)
to make that leap into firstly the needles with sedation
and finally without.
We have spent time just holding the butterfly needle and “seeing it for what it is” -
a thin sliver of metal straw and some plastic that will sting for a minute but helps her body to fight
and we have been talking about adrenaline and endorphins;
Her: ” Why, when I breathe, do I feel more relaxed?”
Me: “Because you have endorphins that are released to help you and that stops the adrenaline from making you feel scared”.
Her: “Oh, so the adrenaline is like a mean dog and the endorphins are like a kind person, who pats and strokes him until he feels happy and doesn’t want to bite anymore?”
She is insanely in touch with her own body.
She is also very hard on herself;
“I want it to work. I want to do the needles at home but if in three weeks (four weeks, nine weeks, seven weeks - the numbers change with each conversation)
I can’t relax I want to talk to [the paed] about going back to IVIG”.
As her mother I can’t think of anything worse than having to find IV access every three weeks
or all of the side effects and complications that go along with it
but all I can do is listen and try to advise.
It’s her body, after all and ultimately she will need to learn advocacy for herself
but at 7 1/2, I think I should still be able to guide her.
I tell her everyone understands how this might be scary
and that our awesome play therapist and lovely pain doctor will go as slow as she needs.
Ivy can be determined though and her eyes glaze over whenever I mention it -
I feel like I’m being placated by a tiny pacifist.
Time will tell, I suppose.
For now, we are just going to concentrate on ‘stroking the dog’
and getting through tomorrow.