help
Gently, gently.
The silver lining is always, always in there somewhere.
Out of all of the terrible I have to believe that something good will come of it
and it came by way of the kind nurses
who told the doctors how very hard the needle dance had become
and the paediatrician
who took pity on this exhausted mother and fast tracked a consult with someone who could help
and the paediatric pain specialist who sat and listened for almost three hours as I relived the last night
and all of the nights before that.
It came with a new plan and new medications to try
and a promise that I would be able to help the small girl.
Fluoxitine for long term anti anxiety
and better pain relief for the easier nights
and Tuesday will see the use of Clonidine to iron out the peaks of anxiety by way of sedation and amnesia
in a controlled, monitored environment at first
but hopefully,
if we need to,
at home soon after.
All of this seems so much all at once
and I am torn between stealing the girl’s memories from her
and the absolute relief that I feel
knowing that our nights will no longer be based on physical and emotional violence.
Both the paed
and the pain doctor
have said
that this will not be her forever.
It is a means to an end
which includes giving Ivy the ability to regain her confidence in the process
and relearn coping strategies and skills, with the help of our wonderful play therapist -
by taking away that primal fight or flight response,
which is all consuming
and cannot allow anything else to help.
With weekend leave to recover and regroup
for the new turn in our journey
I feel so many things but hope is at the forefront of all of it.
Gently, gently I am reminded that we are surrounded by good people who want to help
and I am grateful.
The Beads of Courage
A friend suggests this after my post hits the blog
on a very tough three needle day.
I stare at the words on my Facebook page -
they’re blinking at me (or is that winking).
Some days the Universe smiles down on you in unexpected ways.
It is such a simple idea but one I’ve not fully considered before
or one that I had thrown away because it was not a program available to children with chronic illness
in Australia.
One only offered to kids who are struggling with cancer.
I’ve often wondered why they were the only ones to be allowed this program
because constant traumatic medical events occur in many diseases
and definitely with immune deficiency.
I’ve not known this friend for long but I am grateful for her idea.
One bead for each needle.
One bead for every trauma
and soon there is something tangible to see from all that the girl has been through.
We start that very night.
Three shiny beads from a sister’s collection
and even though the afternoon was full of tears
Ivy smiles as we place the beads on the long thread of fishing line.
It’s not an official Beads of Courage program
but essentially follows the same path
and today the girl counts twenty – two beads
not even two weeks on from it’s beginning.
Some are small and inconsequential
but others are rotund and shiny and resemble something to their owner.
Apparently some beads have different meanings.
Dark ones for really bad days, lighter ones for acceptable times.
Today though the girl just picks one to suit her mood.
It is pearly and white because even though she needed to have another nasogastric tube inserted
it was okay.
It was okay because her two most favourite nurses were there and ‘her’ play therapist too.
She holds the string up so that all of the beads fall into one line of colourful goodness
and studies it for a while,
counts each one and comments on the beauty of some.
Such a simple idea but for the girl it says;
I did this.
I did this and twenty – two times in just under two weeks
I conquered.
Phobia.
When she was little and she had not been through so much
Ivy was fearless.
She loved and enjoyed many things,
especially the beach.
There was something about the salt spray and the feeling of the sand that made us all feel just a little bit wild
and free
but especially the girl.
She would push her chin to the sky and take on the world
and then stuff happened.
For a while there she couldn’t go in the ocean -
attached to a pump, with a port and then a hickman’s line
and she would sit on the sand and watch as the others splashed in the waves
and wished for the day that she could go swimming.
Then one day she could
but when we took her to the beach she was overwhelmingly and shockingly afraid.
Afraid of the sand,
afraid of the water -
just afraid
and whether it is true fear
or a way for her to deflect all that life has thrown her -
Ivy no longer loves the beach.
In fact, I would say it is bordering on a phobia of sorts.
Now, all of my children have had fears.
Noah still dislikes bugs of any kind and was scared of the vacuum cleaner for a while
and Lily had a fear of being eaten by an alligator, when she was four
but they’ve been fleeting or
I have been able to talk to them about what is frightening them.
This is different.
Last week, she agreed to going
and for the first time in a long time, she walked on the sand
and built a sand castle with her dad -
it was definitely progress
but when it came to the water part, well,
it was brief
and altogether painful.
Like it has been every single time since she declared her fear.
For months we have been trying a slow introduction
and gotten not very far at all -
onto the grassy hill by the sand,
to the very edge of the path that spat us out onto the beach,
onto the beach itself, so long as she could be carried -
and so on this day I took her down to the waves,
told her we were going to stand in the water.
Before we even got there, she was begging me to go back.
Screaming that she was scared, so scared and that she needed to go back to the towels.
Right now!
I stood with her
and tried to talk to her about what was frightening her
but all she could do was scream
and twist into me
and beg.
It was wholly awful.
Dave came down then
and my mum
and together we formed a tight little crescent of protection.
I asked Ivy that we stay in the water (barely ankle deep) for five minutes without crying.
We did her breathing excercises
and tried everything we knew to show the girl that it was okay -
she was safe
and her hysterical tears turned to quiet sobs and heaves of reluctance
and then resignation.
By the time the five minutes were up we were both exhausted.
I felt cruel.
I’m sure the many spectators on the beach that late afternoon thought I was
and I’m not sure I’ve changed anything at all by expecting her to confront her fears.
There doesn’t seem to be an easy way to do this,
which is a shame because the ocean has been such an integral part of our family’s healing
but now it’s just a stressful place to be for the girl and I.
I’m not sure what to try next
or if I should try at all
because the suggestion of the beach today has brought out the tears early this morning.
The tears and all of the same issues.
She’s just plain scared.
I miss that fearless Ivy-girl sometimes.
I miss her confidence and her sass.
I wish that things could be different for the girl who lives in her place now.
Almost every day.
Did you have any childhood phobias, or have kids with fears that went to the extreme ?
How did you work through them?
To babysit or not to babysit. That is the question.
When my big girls turned thirteen and fourteen
they asked if they could babysit for Dave and I.
I said no
and gave them every excuse under the sun as to why that would not be possible
and then,
like I have every year
I said I would think about it when they turned another year older.
The day those big twins turned fifteen,
it started again,
as if on some strange loop
and I tried all the usual excuses
and the usual yearly promise
but to date they haven’t let up.
They don’t want money.
They just want me to trust that they are capable of looking after the little ones
and Mal
and Lily
and not get into any trouble, problems or arguments with the teenage boy.
They have tried every single angle they can think of
but still I haven’t budged.
The thing is -
I would love to go out on a ‘date’ with my husband,
eat dinner at a restaurant that didn’t start with Mc and end in Donalds.
Go to a movie with a greater rating than PG.
We don’t ask anyone to look after our brood
because frankly,
we don’t feel as if we have the right to.
We use our grandparent ‘allocation’ up on hospital stays.
Also
we know that seven children are a small army
and people often feel overwhelmed by the large number of young humans dwelling here.
It’s a trust thing too
and
it’s also because I hated being left alone with my brother and sister
while my mother worked
and my father shirked his responsibilities all over town.
It’s all of those things
and I don’t know if I will ever be ready.
At least, not without a good hard shove.
So, the push has been on from the girls
and even more so,
this weekend.
I don’t know what to do.
I know I was younger than Immy and Maddy are
when I was asked to look after the younger ones.
I know that there are many parents out there,
friends,
who are now leaving their older children to baby sit, while they do adult things -
have time out
rediscover themselves.
I also know that there are fifteen year old kids who babysit for money
and adults who happily trust and pay those teenagers.
Should I let them do it?
Should I just take that big step?
What would you do?
Did you babysit your brothers and sisters?
Did you do it for money and if so, how old were you
or were you a little one, being cared for by an older sibling – how was it?
Would you let your little ones be looked after for a couple of hours by two (very mature) 15 year old girls?
What age is the right age?
I’d love to hear your advice, your stories and your thoughts
because I’m not getting very far at all
on my own.