Bad News, Really Bad News And Then Some Good!

I know I am struggling with blogging a little of late, scrapping, joining in with the forums I'm part of and I apologize to all those that come by and read my posts and updates......but basically and sadly 3 weeks ago I got to the point of not coping with anything anymore. Yes I probably deal with more then most but even little old me gets to breaking point and that's what happened 3 weeks ago. So to make sure I did not completely crash and burn and delve into the deep dark chasms of depression and a serious breakdown.... I had to take steps to prevent it from happening but I tell you it came close, it came scarily close. It has been a very scary 3 weeks even to the point that Tim wanted to take me to the doctors twice and for one whole week I was just in tears and to the point of sheer and utter mental and physical exhaustion.

I know the signs of a breakdown only all too well, the inner turmoil and the complete brain chemical out of balance stuff.....been there far too many times and I prefer not to think of it if I have too. I've also watched hubby and my own kids go down that ugly path...yep the black dog, but I felt this time although going to the doctors would possibly get me back on anti-depressants I really felt it was not the answer because as much as I might be happier in a few weeks etc etc...the stress would still be there and that no one could help with that because the appointments would still keep coming in droves and the difficulties associated with my kids and Tim's own difficulties would have had to be put on hold....I couldn't do that so with my own strategies in place (no appointments Monday's and Fridays), rearranging how I tackle all I do and coming to a realization that some things just can't be ignored and I am very much needed, that and with the added help of iron and st john of wort tablets over the counter remedies I am feeling more myself this past few days then I have in awhile.

Ok so that's the bad news, now for the really bad news...... on Saturday evening I received a phone call from my mother who had got married that day. Now if you all recall my dad died October 6th last year from an aggressive form of cancer he was cremated on the 10th and the shock it has been on all the family has been horrendous as you can well imagine. Of course if you also remember my grandmother had a fall not long after that which put her into hospital where she had another very serious fall that kept her there for weeks until I had to put her in a nursing home as my mum 4 weeks after dad's death went to Melbourne for what was meant to be 2 weeks and left me with all the extra responsibility of her and my grandmothers affairs on top of what my family was already dealing with. Exactly one month later, Nov 7th, my mother was engaged to her now new husband.

She moved back home about 3 weeks ago with her fiance and one thing I will share with you is this man is no stranger to us....his own wife died about 2/3 years ago and he has been a close friend of my mums for the past 53 years. On Saturday evening however I received a phone call to say that they had got married and that they chose do invite no-one from either families (probably because none of us agree with it), and that they had 2 witnesses of whom I do not know as she did not tell me who they were and the marriage celebrant that performed the "ceremony", back in Melton....nope not even here in Bendigo.....so imagine my shock of it all. She then informed me that her last name is now Mrs. Campbell...I mentioned that might take some getting use to....she just sad well you'll have to, I have too and in fact I already am.....grrrrrrr, I am a little cross as you can imagine. Then she mentioned she was going to let my siblings know and apart from letting my younger sister know she has told no-one else...nope not my other siblings at all.

Anyway enough of the really bad news and now onto the good news............you all remember my youngest son Maddi with his bleeding eye with all the retinal fluid and having to have treatment for that in the way of a newer drug called Avastin (being used for this kind of thing) and injected straight into his left eyeball. Well good news is that after the 2nd treatment 5 weeks ago his eyesight had improved incredibly. The drug finally worked and as it has never been done before here in Australia and in fact really not in too many places at all around the world (they have only found one other case in Germany), it has been made into a case study and Maddison's situation will be presented at a convention here in Australia by his eye specialist as well as the fellow that works under him for all those medical guys and gals to see. The bleed has completely gone, the retinal fluid has sorted itself out and basically Maddi's left eye is really well. Photo's show even a possibility of the Best's lesion to even be smaller and that is very very promising. Time will tell and this has not come without it's costs.....Maddi's eye's will always need to be monitored and he will always need to have the drug....how often now is the ?

Because last week he was meant to have his 3rd injection and Mr Atkins decided not to do it as everything is looking so good. With continuous monitoring it may be possible that the injections could string out for 3 months......no one knows and as Mr Atkins put it ever so politely "Maddi is the guinea pig in this new treatment and therefore the monitoring will need to be done so we wait and see". We know the signs to look for and so we understand what it means if Maddi notices a change. The other thing is that his eyes also constantly need to be checked for glaucoma, they have a special thermometer that reads the pressure of the eyeball....so far each time it has sat normal. I remember someone long ago said to me that no matter all the negative when you need to chat etc ....end it on a positive......I think I have managed that well because out of all this crappiness we are dealing with as a family there is good news and it's very very good news. How can you not thank God for another blessing and in this case a very much needed miracle!!!

So I will leave you on that note and perhaps next time I blog I will have a couple of LO's to share with you....not new to me but new to you as they were created for Bellascraps MagazineTM and now that the latest issue is out I can post the previous LO's from that issue and perhaps some more that I keep forgetting to show off.
Hugs and kisses to all you out there...............Chris xoxo

My latest LO's....wanna see them?!

Of course you do what a silly question to ask. I have finally uploaded my latest 2 LO's over on Facebook and yet to pop them in all my galleries but here they are for you to enjoy on my blog.

Credits

Credits

So it's Sunday here and I am pottering about the place here and there. Already been to the supermarket to grab a few things....having potato soup for tea tonight and then yummy Sara Lee Chocolate Bavarian Desserts. The laundry has been done and I am seriously just filling in time so thought I'd take the opportunity to blog.

It has been an incredibly exhaustive week...but then when isn't it and I just wish things could slow down somewhat but it's not happening...how do you recharge when you are running on empty?!!! Thursday I kinda fell in a heap in tears just mentally and physically exhausted and the full realization of our son Lance's situation hit and hit hard. Trying to balance everything has become pretty much impossible and I just have to deal with each day as it comes and be mindful where I am in my own head space with it all.

This coming week is no better with appointments galore and also having to deal with some legal matters with our son in the way of guardianship, power of attorney for all his matters which Tim and I were requested about 5/6 weeks to start taking care of now. So that means once Lance turns 18 we will be able to deal with all his legal stuff and not himself as he is just not going to ever be capable of all that so we have all the information now which was sent last week and the forms and now to sit down with one another to sort through it. Thankfully we also have DHS (dept of human services) wanting to come on in and help us with that if and when we need it as well so that's good. More future planning...but tough!

Ok well must attend to this soup of mine....lol and although I have more to blog about it will give me an excuse to do that within the next few days with it. I must update you all on our son Maddison and his eye situation.....something positive amongst all the negative there.

Until next post take care and stay safe...hugs Chris xoxo

Righteous Pups Australia

Although my son Lance rarely attends school (he is at NETschool a compromise to mainstream) last Wednesday Lance went to school for the 1st time this term and spent an hour there. You may all be thinking....wow is that all whereas I'm saying wow yes we managed 1 hour and it was a good hour. Anyway part of the terms "projects" is attending Righteous Pups Australia Thursday afternoons for 1 hour and building a relationship and training new puppies whom of course they raise, socialize and train Autism Assistance Dogs to do a variety of practical tasks for children with Autism Spectrum Disorders and their families. Lance has been so excited about this for sometime and although I had to attend with him last week for the first session and will continue to do so, so long as Lance himself can manage it will be fantastic. I always knew Lance would shine here if only he could manage his anxieties....he did extremely well last week and of course we had already meet with one trainer and spoken to another on the phone prior to all this so everyone that needed to know was informed of Lance's own disabilities! Always a good move to make.

Unfortunately this week is somewhat different and we have had meltdown after meltdown most days because Lance's anxieties once again have got the better of him and they are out of control. No school again tomorrow and I am not so sure he will manage our 2nd week with Righteous Pups Australia...in fact I am pretty certain he won't. I do believe my son needs to be back in hospital getting proper care and being made a little more stable yet again. It's tough being a mum, it's tougher when you have children with multiple disabilities and tougher still when they can't function in any capacity because of their disabilities. The worse thing is knowing my son is in so much mental anguish and pain and that I can't take that pain away from him no matter how much I wish I could. His pacing night after night for such long periods of time, his meltdowns time and time again and daily, his thoughts and feelings and where they sit at the moment and realistically knowing that anything at anytime could happen and we have to be watchful and he can't be on his own...it's hard, it's horrible and it sucks for want of a better word or phrase and I feel so darn helpless.

Life for us is still so full on and intense, will only get worse as more services and people come in to help from different departments and with so much going on I wonder just how much longer I can keep running on empty before I crash and burn as well.

Ok 'nuf of that and now onto other things......I have scrapped for Bellascraps Magazine TM but of course they are for the next issue which is May/June and so can't show you yet....lol and although I have also managed to scrap another LO I am still not sure if it's done so that will also have to wait.....lol and of course in my spare time late at night when many are in bed snoring and snoozing I am usually on my PC surfing the web or trying to scrap anything at all but as soon as I can I will post a LO or 2 for you.

Stephanie has been seeing her psychologist for the past 3 weeks now and that will be continuous now as well as her psychiatrist which at the moment appears to be monthly and I think we are making some small progress there. You could never ever imagine just how much "weight of the world" this kid carries on her shoulders and it's heartbreaking. Grace is struggling at the moment too and is actually sick with something...woke up this morning vomiting and has flu like symptoms so need to keep an eye on her as she has also been running on empty.

Then there is Maddi who goes for his 3rd lot of injections into his left eye tomorrow. Treatment seems to be working but the fact it needs to be continuous sucks too because without it his eye starts bleeding again. We have Vision Australia on board now and they are helping with what's needed although it is all still early days at the moment and of course he has come down with a cold and has not been in school this week so far.

Anyway I think I'll leave it there for now and get this posted before Blogger has it's outage and I can't do anything. Till next time take care and stay safe, hugs Chris xoxo

Hummmmmmmmmmm.................................!

It's been awhile since I last blogged, I have plenty of excuses why but I won't bore you with those details tonight as I sit here typing away trying to update in any capacity. School holidays came and went as you know and we have been back in school for the past 2 weeks......well nearly all of us. Lance is on a downward spiral at the moment - his anxieties and obsessions have increased terribly and so we are trying to deal with that each day as best we can literally one moment at a time and therefore of course he hasn't been to school this term although he only goes for 1 hour a week he's simply not even managing that.

Maddison however has started back and did so last Thursday and has been doing half days to slowly get back into "the swing of things" and yesterday and today managed full days which is good. His treatment looks like it has worked in part although some days his eyesight seems blurrier than I like but all in all the drug being administered on a monthly basis seems to be making a positive statement and we just need to wait for a couple more weeks before we see the eye specialist again and he can let us know what's going on.

The girls seem ok at the moment....busy but managing with support and help. Stephanie was also referred to a child psychologist and well as a psychiatrist and last week was her 1st visit with the psychologist and we see him again this week. He can't believe the horror story we have been living for so long and is only too happy to be involved. I'm happy with that as well.

Tim and I are managing from moment to moment but must say we are both running on empty and I'm not so sure how to recharge to keep going. Awhile back the family were referred to Department If Human Services - Disability Services - Family Case Management Services (mouthful hey!) and that referral came through as of about 1 week ago and we had a first meeting with a new case manager on Tuesday who will help oversee all the supports etc that are needed to be put into place for Lance and the family. Our 1st planned meeting with this new case manager as well as Lance's CAMHS case manager will be on Tuesday where we start to work on and establish some planning in regards to the needs of Lance and the family and all long term as well.

I haven't done much in the way of scrapping.......I have finished a couple of LO's for BSM but I have to say it's been full on and I am struggling to stay afloat......I've been treading water for awhile and hopelessly run out of energy in every possible way...so not a good sign! I don't get into any of the forums although I am on facebook to zone out and on there I feel I can catch up with lots of online buddies all in the one place rather then the forums so I'm trying!!!!

Not sure what else to say at this stage so I think for now I will leave it there and hope that the next update won't be too far away and that l'll have a couple of LO's I can share with you as well. Tell then take care and have a great weekend. Hugs Chris xoxo