A Family Update

So many things have changed for the better.  Noah is making improvements, some small but some have been amazing.  So I find it very difficult to say and to explain to you that it is not going that well for us. 

We are emotionally and physically exhausted.  Perhaps because finally Noah is doing so well, we are finally allowed to relax.  It is hitting quite hard all the things that have happened in the last 6 years.  Thijs and I have been so busy fighting fires and focusing on how we can organise things so that Noah is best taken care of, we've not taken very good care of ourselves.

With help from our psychiatrist we've been trying to create a space for us to be able to take a break.  We've tried everything, but it always came down to the fact that Noah needs so much care no one could care for him without an assigned nurse being provided.  We don't have the funding to provide extra care so we applied for 'Respite Care'.  Due to the interpretation of their guidelines we were assigned 1 day respite care and 22 hours nursing care was taken away per week back in April.

We asked for help and got trampled by bureaucracy.   Under the motto "people abuse the system"  Noah is denied 1 to 1 care at his Day care facility (which is the 22hours they revoked).  We have invited the bureaucrats to view our home, we have provided letters by doctors and therapists to support our case that Noah and we need this care but this does not help.  We asked for help and it's worse now than it was before!

On Wednesday this week Noah pulled out his canule and it was very traumatic for all of us involved.  It very nearly went wrong.  This proves to me that what we are doing is very serious and very necessary.  I am not an overprotective parent.  I am not exaggerating.  I am not a control freak.  I am not overly emotional. 

What I am is very traumatised, tired and burnt out by the sheer scope of the circus that surrounds us.  I am overwhelmed by the red tape.  I am frustrated with the politics of treating a family with a child that has multiple handicaps as a pariah of society.  I have approached every organisation I can think of to help us, but again Noah is too unique.  Helping Noah would be a drain on limited funding as it would only help Noah and not a stream of people such as the blind or the deaf or the diabetic!  It is all understandable, it's the crisis, belts must be tightened.  It's also the last straw.  It's just too much.

Thijs and I just had 2 weeks in Greece to try and relax.  It is not very relaxing leaving your vulnerable child with strangers, no matter how qualified, because we know from experience that nurses can make mistakes too.  We did enjoy being away from the stress of the environment though and we did enjoy spending time with the Drosten Seniors.  For myself, it was wonderful being in the mountains and getting to swim every day. 
For the second week Noah stayed with one of his nurses and then we could let go and really relax.  We got updates via facebook and I shared a few of the photos.  Noah was having a great time.  It also happened to be our wedding anniversary that second week.  We had a really romantic time in Athens.  I loved every minute of being with Thijs but I missed Noah so very much. 

One thing that really made an impression on me when we got, (in a nice way), forced to take some  time out was how many people care about us.  My world is very small, just the home, Thijs and Noah.  I forget about family and friends and even neighbours who are all here too.  We both want to say thank you for all the kindness you show us, it is very much appreciated. 


The holiday brought to the fore all my physical problems.  I REALLY haven't been taking good care of my self.  When we got back we had an awful lot to organise and arrange, it has been very hectic.  I've had a few scary moments with my blood pressure and so I have decided I need to take another break, this time to focus on my health. 

It isn't a very easy decision to leave my family to fend for themselves.  I feel lots of different things, but I can't afford to get seriously ill so I have to do something.  Thijs is staying in order to provide some continuation of normality for Noah but also because he has his own responsibilities. 

With this post I am asking for your help, for me, for Noah and for Thijs.  I don't know what you can do, I don't know how you can do ...... but if you can do anything, please just do! :) As of Friday, Thijs will be on his own with Noah for 2 weeks.  I'm sure he will be glad of some company and/or a helping hand. 

xxxx