We're not alone.

Trying to get the right level of care for Noah has really worn us down. I don't like to think that I'm complaining, but my mind is just running in a loop of "how can we resolve this, how can I help my family". In order to carry on I need to get all the thoughts out of my head and thanks to technology I can dump it here on our blog! So apologies for being repetitive, but it's for my own sanity! Some people might argue that I wasn't sane to begin with - but that's another story! ;)

Yesterday I found out that we're not the only family struggling trying to get care for their families. There has been an item in the Dutch newspaper AD concerning another family with similar problems getting care. The article is in Dutch, and I will say that some of the reactions from other people are not very nice, so if you get upset with these things - don't read them. The upside is that we were called by a TV program that is investigating this situation to hear our story and today a member of Parliament has commented on the article. I'm glad that this situation is being brought to light because I honestly find it scandalous.

Don't get me wrong, I am 100% grateful that there is help and funding to be had. I don't think this exists in the UK and I hadn't expected it when we first knew about Noah's condition or factored it in when I thought about him being home. I was prepared to sell our home and live in a smaller place on a lower income, that's what equity is for, as a backup for tough times. I also expected it to be hard work for myself, but I never expected Noah to suffer.

Luckily I don't live in the UK, I live in the Netherlands. Thankfully the Netherlands worked out that it's better for everyone if a long term ill patient is cared for at home. It's also A LOT cheaper for everyone. It allows beds to be available in the hospital, it keeps health insurance costs down, employs local people, allows medical people to also work flexible hours and close to home. Plus best of all, as a parent I get to bring my child home. By paying the money out it allows people the flexibility of choosing their carers, the people who come into their home, instead of having to go into an institution or having a faceless company send whoever they can employ on minimum wages whilst maximising their profits. We've all seen how privatisation has lowered costs but also the quality of service. Again, that's a separate discussion.

The difficult thing for me, and Thijs, to come to terms with is that Noah IS handicapped. It's a terrible word to have to tag on to any person. I just can't say " I have a handicapped son". I rarely think it, mostly we think of Noah as having difficulties that are temporary and he will grow over them with training and help and medical intervention. But we never really call it a handicap. When you ask for assistance in caring for your son, you have to list his handicaps and give detailed descriptions of absolutly everything that he has problems with. Doing this is a massive punch in the face from reality.

I shouldn't have read some of the comments after the news article, I am one of the people that get upset by thoughtless comments. So, unlike what some of the comments are suggesting, we don't do this willingly. We, (and I can't imagine any other family doing it either), are not making a profit from the disability of our son but we're trying to make sure that he gets the right level of care so that his quality of life is equal to that of a child that doesn't need care. It isn't, and it shouldn't, be easy to qualify for this money. But once you do qualify for this money there shouldn't be a 6 week never mind a 6 month delay in sending it out. There shouldn't be quibling over how much money is too much - as long as it's cheaper than what it costs to keep that child in the hospital, then pay the damn money out!
It's a long hard slog with among other things, doctors letters and copies of your medical files before you can qualify for this assistance, it's not something you can cheat at. To my way of thinking, if you suspect someone is exagerating then go and visit the house situation. Don't sit behind your desk delaying and delaying in the hope that the family give up! God forbid that anyone should need this money, but when they do, please don't make the families life a living hell by denying their loved one the help and assistance they are entitled to.

When nursing care is here, Thijs and I don't sit around sipping Pimms and being massaged by nubile young things! Ha! What nursing care gives us is the opportunity to be Noah's parents, we can play with him and just do normal things without worrying about suctioning or preparing medication, or a hundred and one other things. We can just enjoy being with Noah.
The other great thing about having a nurse in the house is that we have a medical expert on hand to ask about the things that worry us about Noah.
They are also experienced in navigating the medical world, there are so many departments and specialists we have no idea where to start looking for help and this has in the past wasted so much time and cost so much pain for Noah.
All these are great plus points, but the down side is that we're still living our life in public. I thougt it would end after the hospital, but we have no privacy. We do it for Noah. It is a luxury, we're greatful truly we are, but it's not fun and we do it because we have to.

We started writing this blog to share our family news with the family. When Noah was diagnosed with CHAOS, we wanted something positive on the internet regarding this syndrome to give hope to other families that get this diagnosis. We've tried to keep it real, and positive. I don't write this for sympathy because to be honest I think we're in a very luxurious situation. In America children are abandoned in the IC unit because the parents can't afford to look after their child. Thank God that isn't the situation here... yet! I guess what I would like is understanding. I love looking after Noah, I'm proud and happy that I can care for him. The same as any parent, we want the best for our son. At the moment that means 80 hours of nursing care, he has a right to it and we want him to have it. We will fight to our very last breath until he gets it, and no faceless administrator in a zorgkantor will deny him his rights.

Ooooh, my Scottish blood is stirred now and feel like screaming "Freeeeedoooooom!", (just like William Wallace famous for leading the Scots agains the evil English to gain their independance and freedom), wearing tartan and maybe having a small dram of whiskey, or two! In other words, I shall lighten up and post some good pictures to compensate for the ranting. :)

Louise