Cancer

One of the first lessons I learned on this journey of a 'special needs parent' was that I was not alone. It was an invaluable lesson. The other came from my children - both of them, but especially Miss Hannah - life's too short to hold back because you're scared/embarrassed/shy. 

So yesterday I watched anxiously while a virtual real life mum of 4 with stage 4 liver cancer risked her all for the chance to live cancer free with her 4 beautiful daughters (the youngest of whom has DS - hence our initial connection) and her fella. It didn't work. They found new tumours in the scant section she was hoping she'd be able to survive with.

Today she's dusting herself off. Putting on her red lippy and preparing for a too finite future.

Three days ago I went to the funeral of a guy I went to school with. By the by he was born with significant physical disabilities - and you know about three weeks ago when P and I were marvelling at this modern inclusion gig and trying to recall the scant exposure to disability that wed had in our schooling - this guy, an old and good friend, who Ps been friends with since he was 10 - this guy didn't even get a guernsey. And we both wondered why he hadn't commented on the last few fb posts [P is playing his eclectic and quite extensive vinyl collection from Z - A].... And when he didn't arrive at work the previous Friday - his work mates were concerned - and so he had passed away - and we were reminded that yes indeed he had significant disabilities and that these were no doubt behind his early death at 46.

The night before the funeral, Ps brother - the one with stage 4 brain cancer - had a seizure. He's still in hospital now and we are all very concerned for him. We want to be there for him, to support his gorgeous fiancé - the scans aren't good - the old tumour continues to grow and new ones emerge... There is a wedding planned for 3 weeks time - well all be interstate then but now - it's not good. A conference with his drs on Monday might tell us more but in the meantime P is poised ready to fly to Melbourne in an instant. It seems such a cliche 'cancer sux' when I see it on someone's fb wall, or 'kick cancers butt' - what good is such vitriol when you are facing death?

The funeral was beautiful - Chris lived full of passion, lots of passions - but the one I relate to most was music. I loved reading his comments on Ps vinyl fb posts - even Billy Joel! His enthusiasm for creative beauty. His funeral was packed to the rafters with people from various stages of his life. It began with some Rolling Stones, had plenty of divine gospel hymns in the middle and concluded with the Warumpis  - an awesome aboriginal band. Sublime.

We caught up with school friends we hadn't seen in 30 years and others were lucky enough to still see regularly. 

Through the wonders of our small world and via fb Chris realised that he and I had two mutual friends who wed met through very different circumstances - we were all there to mark his passing, to celebrate his life and make our inadequate offerings of support to his family.

The spirit of these three very different individuals is what triumphs in the end. For they are full of passion, love, compassion and life. Oh yes life in the face of death. Cancer doesn't steal that, death can't defeat it. I don't know what happens when we die but I imagine it being a bigger, more intense version of the firey abyss P and I went through with the twins birth, Hannah's diagnosis, her heart surgery and post operative complications and Kit having meningitis - the darkest time of my life when my hope was depleted and my faith gone. Even in the face of all this and more these people stand tall. Their spirits guide those they love. I don't believe they ever stop.

Tomorrow isToday

So it isn't a week since last week's meltdown but I am pleased to report that we are getting back on track. It's early days but the yellow brick road is gleaming postdownpour and I can see rainbows far off in the distance.

Lots of work later and I have a Guide written - Out and About With Hannah. The school has agreed to send an extra pair of hands along on camp - a fabulous TA who has a daughter that will be on camp too - and who is doing further study re Down Syndrome. So really I could say that this is a bonus activity for her!! Lol. Well I could say that if I wasn't a teacher myself - so I know that taking a group of kids away whilst very rewarding is in fact also a big imposition.

A couple of run ins regarding ipads - not quite sorted but on the way.... so progress is being made.

Hannah is still enamoured of the idea of being a 'big girl' so is trying to concentrate at school although I am told and totally believe that she gets pretty tired by about lunchtime.

Today I had to pick her up at lunchtime togo for a blood test - at the lab she took up the request form herself - and handed over her medicare card when requested. The Lab were great and quickly realised that as much as possible I wanted Hannah to be in the 'driver's seat' so asked herto checkher details on the form and blood sample - she didok on that  - I am sure she'll be doing it on her own like a pro before too long. So that impressed me - her confidence is growing. Then we went back to school to collect her brother and she was keen to go and independently show her friends her bandaid from the test - and then her teachers too.


Also this morning I got a call from her roll call teacher - it mightbe too late but there is a special needs event in swimming trials coming up - would I be interested in Hannah participating. My word I would!! Hannah loves swimming. So we talked about that and then I thought I could check with her oldswimming instructor - whether she could do 50 metres on her own - did she need kickboard etc. Now being the small world that it is, her swimming instructor happens to also teach her in her disability dance class and also happens to have a daughter in the same class at Hannah's school. So I got a text back not only answering my questions but offering to be the person to assist Hannah cos she'll be there watching her daughter anyway. Ahhh... sometimes I really love this life. I know that I am blessed - I know it every time I look at my twins (even when I am yelling at them :p) but I am reminded of just HOW blessed I am on days like today - and also on days likelast week's disaster cos even though it feels so incredibly hard and isolating in the intensity P and I stick together. We are a team. And then when the worst of the storm has passed I know that there are otherswaiting to help us through.

Here's some pics of Hannah swimming at the school carnival last year - she really wanted to go in the big pool.... and the daughter of that TA - well she swam alongside Hannah.... and I was told by a number of people who were there just how movingit was and how the whole stand cheered my monster child on.

Our army

This is the only army I'm interested in belonging to: special needs army

It's a great read - and a clear sign given I shared it on fb - thenight before the day I just had....

Bus(t)

7.45 pm Unpicking the hem of a school uniform

7.15 eating dinner

6.45 cooking dinner

6.15 arrive home, clearing up the stuff left out on the bench so there was room to prepare dinner and putting away the groceries

6.00pm being called 'supermum' by a random marketer trying to get me to make regular donations to an animal charity

5.30 shopping for groceries - it's 10% discount in you buy today

5.00 dropping Hannah at her dance lesson - and going shopping for groceries

4.30 afternoon tea with Hannah

4.00 ringing venues to see if they've ever had a student with a disability cross their doorstep in a mainstream class booking

3.30 arrive home, more panadol, check emails and start ringing venues to find out about disability access

3.00 driving to pick up the kids, holding back tears, texting a friend to pick up kids and meet me out the front of the school cos I'm worried I can't hold back my tears

2.30 read email from school that makes me feel slightly more positive about school camp. Cry as I read it to my colleague.

2.00 working

1.30 working

1.00 working

12.30 lunch at my desk - working

12 - working

11.30 working

11 - sneaking to the lunchroom to get a cuppa wthout being seen, massive headache still there

10.30 take panadol, read fabulous email to principal of kids school composed by DH trying to capture our reaction to morning meeting

10. still crying, ringing a 'brains trust' to see if they have ideas

9.30 crying

9.00 crying, debriefing from a horrendous meeting at school with a colleague

8.30 sobbing as I drove to work

8.00 blindsided in a meeting - denying all the 'can't dos' being thrown at us about Hannah

7.45 explaining why neither P or I want to go on camp to 'take care of Hannah' aka - not your responsibility - and we didn't even get into the leave without pay that we'd need to take or the blow to her blooming confidence that it would bring....

7.30 driving to school meeting

7.00 getting kids fed and teeth cleaned and Hannah's creams on etc

6.45 encouraging Hannah and Kit to get out of bed and get dressed for school

6.30 double checking packed lunches for the day

6.15 getting out of bed, getting dressed and checking work emails

6.00am awake

I feel like I've been hit by a bus. I wonder what the closest approximation is for parents of 'typical' children. Every time it happens it blindsides us. Last year it was the paed who doesn't normally bulk bill us - he not only bulk billed but sent us down for xrays and further blood tests. Our crisis antennae went to full alert. Lucky all resolved and xrays were fine.
Today it was school camp. Perhaps I should just quote a little from the email we sent as follow up...

"I am not sure that the meeting we had this morning went particularly well. (We) ..... walked away from it somewhat stunned.

Throughout the years... I have always been impressed with your commitment to inclusion when it comes to Hannah. More specifically I have always believed your attitude and those of Hannah’s teachers has been that Hannah was part of the school community no different to any other student, regardless of her individual needs.  I also know that Hannah has thrived in the last few years because of this.

Sadly I felt this morning we were back to a position that I have not felt since the early days of Hannah’s education. One in which her disability is a burden and an inconvenience.

I had expected we would be using the time to constructively plan how to make the .... camp an enjoyable learning experience and what options were available to enable this. Instead I believe that a conclusion had already been reached before we began, that being, Hannah would not cope with the situation at all. To me it felt like the starting point of the discussion was what Hannah cannot do rather than what she is capable of. I believe this is called the deficit model by academics.

As always .....(we) are committed to working with you and Hannah’s teachers and are more than happy to contribute in a concrete and meaningful way. Having said that it is our job as parents to ensure that Hannah grows to be a confident,  independent and self-reliant person. This and the sense of Hannah  being singled out is our primary reason for being resistant to the idea of one of us being present throughout the three days.

I am absolutely confident that Hannah will really benefit from the camp ..."

Now we received a response which we are more than happy to work with and build on - so I am NOT complaining about this specific school - but today was BIG. It was hard. and I need to process and debrief - otherwise - I have learnt nothing and pass on no experience of value.

If I was to rewind my day it would have started with a very different meeting. Instead of asking seemingly random questions as to whether she could dress herself or wash her hair it might have begun with some positive statments about how she is adapting to middle school (yrs 5&6). Now there are issues of transition but overall she is keen to do well and if she hasn't go her act together yet - neither have the teachers - they are still finetuning what the year will look like - so surely they could find a couple of positive things to say???? Then the discussion needed to have 3 clear areas of focus:
1. self care - so are there any areas where you think Hannah might need some extra assistance; eg mealtimes, sleeping arrangements, getting dressed etc
2. how can we manage such a busy schedule and still allow Hannah to enjoy the range of places we are going to?
3. what level of additional supervision do you think needs to be in place to make this happen? Can you volunteer to help with any of this?

but that isn't what we got - and i know how easy it is in hindsight, but man today sucked. BIG TIME. 

All our flight/fight mechanisms were activated - this is our precious daughter, our gift to this community - and we will stand up for her EVERYTIME. At the same time I know we got defensive. We wondered if we were letting Hannah down, were we a 'fail' as parents? Should we have done more? Should we be going on the camp with her? Should we even be sending her? What do special schools do? Would she be better off in one? UGGGHHHHH and that self doubt means that when you ask me if Hannah can shower herself I sharply reply "yes" as if you are a bit of an idiot for wondering... but in reality I know that yes Hannah CAN shower herself (for example) but she does need someone to be aware and adapt the environment to ensure that she is able to get the water temperature right first.

Lucky we get new days. Tomorrow is our new day. I have a lot of work to do. I'm going to be ringing around various venues asking about disbaility access, creating a visual travel diary for my daughter and creating a "How to Manage..... Out and About with Hannah" list for the wonderful staff member that has now been added to the camp to help ensure that it is all Hannah expects it to be (she's very excited about being a big girl and going to camp) and maybe, just maybe a smidgeon of what P and I dare to dream of for her in this inclusion journey...

Cos EVERYONE is entitled to a chance.