Hi all,
Really nice to hear you first timers enthusing about what stuff to buy. Enjoy it, I am not going to pop your bubble with unasked for recommendations - go for what you like! As an ancient third timer, this little one will be in cast offs from the start (but then we do have 5 pushchairs, 2 slings, 4 highchairs etc to choose from).
A bit stressful of late. DD rushed in to hospital as an emergency on Saturday morning. As DS and I are only just over flu we're not allowed on the ward so Dad got to enjoy a couple of sleepless nights there. She came home last night, in for tests today but hopefully ok.
DS is off school with bad cold and a severe case of whine-itis. He does not make a good patient!
Loopy: sorry to hear about your friend. It is just rubbish. Sorry everyone for hijack, but advice for Loopy as requested (some tips work for life with new born too).Few tips I would offer are:
- Information is power. To start with, you feel like you have so little control of what is happening, and everything is new. The hospital should give your friend an information pack but you can also get really good information from: CHildren's Cancer and Leukaemia group.
We've found our support worker with Clic Sargeant really useful - your friend's hospital should have one: Clic
There is loads of info on the internet, much of which is frankly crap because only 'BIG' news or those withtoo mucha lot of time get on. Avoid generic searches and look up specific things like side effects of drugs on Macmillan.
- I would recommend that you /other relatives have a read of some of the info so that you can support and sympathise with your friend without her having to translate everything. Very quickly she will have to get used to phrases like Hickman lines (also called wigglies), neutropenic etc - it is really hard work sometimes having to explain what this means to people when you really just want a bit of shorthand support (text messages are invaluable). Ask your friend if she would like you to set up a telephone tree - so if she gives you info, you agree to pass it on to a couple of people to save her repeating the same thing.
- Practical help (works for life with newborn too). Lots of people will offer help, but if you had time to think specifically what help would be useful, you may well just have done it yourself! The most useful things for us were friends turning up with or leaving stuff on the door step: bottle of wine, crappy magazines, loaf of bread and bottle of milk, casseroles, loads of fruit, nice toilettries. Little, practical things help too: e.g. offer to take/collect other kids from school. Collect her ironing. Text her every now and then if you are passing to just ask if she needs stuff. If she is at home, take the coffee/meal to her - if people come to see her/child, they need to make their own drink rather than her 'entertain' them. ( first time mums take note visitors make drinks for you and themselves, or even better turn up with dinner. Simple exchange: food and drinks buy cuddles).
- Visit your friend in hospital, both to see her and for you to watch over the child for a while. It will be good for her and her child to spend a bit of time apart, and means she gets to do simple things like have a shower/ go for a coffee by herself.
Likewise, it is helpful to have someone who is willing to help out with other kids, but you have to be subtle about it: ask if her kids would like to go on a trip you are planning so they are invited rather than offloaded. Make something up if you have to: a new DVD that you especially want to watch with them etc. Avoid buying a present only for the ill child - they will no doubt benefit from a hospital playroom stocked to the roof anyway. Difficult for the other kids not to feel sidelined if the ill child is constantly getting presents. If you do want to buy something for the ill child, I would recommend a small comic or sticker book, cheap DVDs - stuff that can be done in bed - and a small present for the other kids (which they will share anyway so everyone wins).
- Encourage other kids to visit the ill child and parent in hospital. It takes away a lot of the fear the well child has (because they get to see the hospital routine with blood tests, temperature checks et) but also shows that ill child might have mum with them all the time, but actually, life at hospital is pretty dull and not a treat. The hospital may have a play specialist that can work with both the ill child and siblings.
- If you can look after the ill child for a bit, at home or hospital, it means mum and dad can spend some time with the other kids that are missing out. If you can help out with the toddler, that works too as they aren't really going to miss out like a 6 year old would. (Works for those having baby number 2: please encourage your friends/family to help out with baby so you can spend time with toddler rather than the other way around).
Lastly, a very personal one for me but one I know a couple of the other parents on the ward feel too: I know it is well intended, but repeatedly saying 'I don't know how you are coping' isn't really that helpful as it implies you have a choice: not coping is simply not an option, you just have to get through it and plough on. Wailing about the unfairness of it just doesn't come into it: those kind of emotions are, tbh, a luxury you don't have time for when you need to support the child fighting to get better. There will be times when things just get too tough and your friend will be really down, and there will definitely be times when things are improving that she/they will just collapse because adrenaline keeps you going. Better to remind her she is doing a great job holding it together, and give her a bit of space to flop when she needs to.
Hope that helps.
Have a great few days everyone.
SBM