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How to help a new NKH family.

Updated: Mar 12, 2020

One subject that seems to come up a lot is what exactly can friends and family do for the family of a newly diagnosed NKH child. Or indeed for any family dealing with a terminally ill or severely sick kid.

Naturally I cant speak for every one but I can share my experiences of what people did for me and also what I wished people had and hadn’t done for me.

Meal Trains.

A meal train is just friends and family rallying around to keep the family fed. Cooking decent meals really is the last thing on your mind and often Mum will be in hospital with the sick child and Dad will be home with siblings. If the Dad has been at work all day and now has to do all his wifes duties and take care of the other kids, cooking is a massive inconvenience. If it wasn’t for my friends helping out, my poor son would have mostly likely survived on scrambled eggs and ice cream for quite some time.

So either do this individually or set up a group and aim to keep their freezer stocked. Drop around healthy home cooked meals that they can eat straight away but are also OK to be frozen. Aim for containers that are disposable or you don’t care if you don’t get it back. Worrying about returning endless plates and casseroles dishes is yet more stress. If you don’t cook, then there are still plenty of ways to help with food. Buy some chicken breasts, a taco kit and some salad and bag it up together. Buy a high quality family frozen lasagne and garlic bread. You can drop off vouchers for anything from supermarkets, to fuel, to coffee, to take out. Even the healthiest of families sometimes just want McDonalds after a really shitty day. If they drink include a bottle of wine or six pack of beer. Yes parents of sick and dying kids drink! Not all of us, but for many it rightly or wrongly becomes a useful survival tool in the early days. I even had a bottle of gin delivered to me in the hospital by one friend. Just gin and chocolates. It was like a care package for a grown up in crisis. i should add, I didnt drink it in the hospital but it made me so happy that someone still saw me as the old me. The nurses even offered to bring tonic and lemons on their next shift but I declined. Looking back I now realise Alice wasnt expected to survive the week so I think the nurses were actually planning ahead.

In addition to this, now and again when you are popping to the shops, just make a call to see if the family need anything. You don’t need to call in when you have some things for them, you can just ring the doorbell and leave on the porch.

Goods and Services

If you provide any sort of service, offer it for free or draw up a voucher. Hairdressers and beauty therapists, offer the Mum a haircut and facial or massage. Cleaners, offer to clean the house a few times. Offer to mow the lawns, clean the windows, service the car, do the ironing. Anything that you can provide is just as appreciated and needed as something purchased. If they don’t take you up on it, remind them the offer stands a few weeks/months later. Its weird accepting help and it takes a long time to fully appreciate that people mean these things and aren't just saying it to be nice. So make sure they know you are really do want to help, but dont push too hard. Tricky one to balance, I know, but hopefully you get my point.

Help with siblings.

When Alice was born, my son wasn’t even two so trying to juggle both at the best of times was insane. Add to that tube feeding, preparing multiple medications, giving meds every 4 hours around the clock, dealing with vomits, seizures, exploding nappies, swatting up on CPR, your own mental breakdowns and so much more, just made it impossible for me to do it all. The biggest single help I had was friends who stepped in to care for George. Offer to pick the siblings up from daycare/school, take them to the park or the movies, have them for sleepovers and playdates or even just go to their house so they have an adult to show them some attention. Siblings get so left out so an adult going around just to see them and not the sick brother or sister can mean the world to them. Take the sibling a gift too because the sick child gets all the gifts. In short make them feel special and take some of the guilt away from the parents who now have to face that they will be failing one of their kids almost every day for the foreseeable future.

Random Messages.

Don’t expect replies and you have no right to be put out if you don’t get one, but random messages of support are amazing boosts. Just a text to say “Hi” or a Facebook messenger post to say you are there if needed. If you see a nice card in a shop just popped through the door to remind them they are loved. And keep this shit up! This is not a short term crisis, things do not get better because a disabled child gets older, or a child is apparently winning their fight against cancer, in fact it often gets harder. People fall away and the support falls away but we still need it. Life moves on for the world, but we, the parents, are forever trapped in the room where the doctors said “You might need to sit down for this”. We are scarred forever and we bleed every damn day.

Don’t forget the Dads.

Now Im not a bloke so I’m not really sure what they need. Maybe they want to talk about it, maybe they want nothing better than to not talk about it and be completely distracted, but either way they need their friends. No one asks about the Dad, no one assumes that he is equally as devastated and scared as his wife but he is, and worst still, he isn’t allowed to show it. Include him, ask after him, check in on him, invite him out, ask if its ok to pop round and if he wants to talk about it, listen to him. Don’t expect him to off load on you (because men tend not to) but give him the chance by asking him. And depending on you and your relationship to him, some men need hugs too.

The little things.

If you go round for a visit, make the tea, don’t wait to be offered one. Chances are the Mum wont even think to offer and then she’ll feel like shite when she realises she didn’t. Go in and ask if she wants a tea or coffee and make it yourself.

Bring cake. Cake always helps.

If you see washing on the line, fetch it in. If you see dishes in the sink wash them up. Don’t make a big deal out of it because my god its embarrassing enough as it is having friends round when you’ve been crying for days, your clothes are stained with puke and medications and you know there is poo somewhere on your carpet but you cant quite sniff out where. Just make the tea and do the dishes while you chat. Your help without wanting praise or recognition is appreciated more than you’ll ever know.

Get educated.

Either listen carefully to the family when they tell you about NKH (or cancer or whatever it is) or do some research. Having to continuously repeat and explain treatments and conditions is exhausting. The best friends, take the time to learn about your new world and then the conversations become so much easier when you are talking about a subject they have some understanding of. As a parent in this situation you are acutely aware that you are now so different to all your friends. We are dying inside at this unauthorised personality change that we had no say in. So soften the blow by changing a bit with us. Try to join our world just for a few conversations here and there because it is so fucking lonely in our new world.

What NOT to do.

I don’t want to say too much here because Im a firm believer that if people worry about doing something wrong, they tend to shy away from doing anything at all. So my general advise is just do something, just say anything and just ask the questions. If you get it wrong, then its no big deal, at least you tried.

However, one big shock I got in the early days, was how certain family members thought it was all about them. They reveled in the pity and the sympathy, some cut and pasted every Facebook post I made, without my permission and put it on their own page, to ensure the maximum amount of people knew they had some sort of link to a dying child. It was weirdly morbid.

I was told that children dying wernt as bad as adults dying, that 2 hours a week in the company of a high functioning autistic child qualified one family member to "know exactly what" we were going through (this was said to me on a day when Alice had stopped breathing and been taken to hospital via ambulance at 2am). I had our daily routine on palliative care compared to the same hard work involved in babysitting a friends kids and so on. Needless to say all these people have been removed from our lives as they were such epic turds, but it was absolutely shit we didnt need.

So I guess I can sum it up as just don’t be an arsehole. Its not about you, this is not your crisis so don’t be weird and try to ride the wave of sympathy for your own gain. No matter what you think, you don’t understand it, you simply can’t understand it and don’t get it. I'm sorry but its true. What the family chooses to share with you will most likely be about 1% of the true horrors of what they are dealing with, so they are not over reacting or dramatizing. Please please just be kind, be considerate, make allowances for responses you didnt anticipate and if you have nothing constructive to say or do then, kindly go about your business and just be grateful this is not you.

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