"If there is anything I can do, just ask ?"
Its what friends and family say to each other in times of crisis, right ? So why is an offer of help, generally not met with a long list of what can actually done.
In the case of a parent of a child with a serious illness, it's probably because you are asking the overwhelmed, embarrassed and exhausted to think further than what will immediately help their child.
So, here's a practical list to help support those you care about for those times of need.
Text or email often. Let us know that you care; we do read messages, and they mean a lot but we don't always have the ability to reply so please don't expect or feel hurt if you don't get a response.
Be specific with offers of help. Think of three things you could do i.e. take care of a sibling for the afternoon, clean the house, cook a meal, so all we need to is answer "yes please".
Offer to be a point of contact amongst friends / family. To pass on the current situation and progress, it is helpful to know one phone call or email can reach everyone concerned.
Visit. It may be daunting and you may feel like you don't know what to say but visits from the outside world are sometimes what gets us and our children through each day. Not only the visit itself and the practicalities of what you can bring in, but the anticipation can fill our child's mind and keep it from straying onto less pleasant things.
When you come in, please remember:
If you say you are coming, then please come, a disappointed child is not what we need.
Only come if you are 100% well yourself.
Bring in fresh food, fruit & veg, a home made meal and homemade treats (all wards have microwaves). Perhaps bring in activities (if appropriate), as many children need even more entertaining than normal to keep them occupied. If possible, check if there is anything specific that is required from the outside world. Whims change rapidly and need to be fulfilled :-).
Stay for as long or as short a time as is needed. Short visits may sometimes be required (little and often) however, medics may often interrupt visits. Dont take this as your green light to leave, offer to pop back in 10 minutes. Give us time. It is sometimes handy to visit in pairs so one person can stay with our child and the other can be there for us.
Visit often. Please don't feel like you have done your bit by visiting once, we need your love and support over a long period of time, more so after the initial flurry of help.
Arrange a food rota. Among local friends / family take it in turns to prepare a home cooked meal either during hospital stays or even during stints at home. Delegate one person who organises everyone else (please dont expect us to). Doodle Cal is very useful for this. Remember to use disposable containers.
Gifts. We will almost always state we need nothing and of course all we really want is for our children to be better, but well-thought through, practical gifts that a group of people have chipped in to buy not only demonstrate how much you care, but can prove very useful i.e. moisturisers, magazines, it is part of the process to neglect ourselves :-).
Help your children to make video messages and drawings to send in. Our children miss their friends and love to see familiar faces. They could perhaps record a joke or show themselves making something they then send in.
Don't be needy or over sensitive. These are impossibly hard times. We need to give 100% of ourselves to our children and we dont have anything left for anyone else. We need you to be unwavering in your support.
Try to empathise. It is natural to say "I cant imagine what you are going through" and of course you can't but you can try. Listen and remember what we tell you about treatment plans and remember procedural dates. Write them down if necessary or look up medical terms so we feel you want to be on the journey with us. If you choose to do your own investigations for other similar case studies / treatment options, be mindful that every case may appear the same but can be very different and while increased knowledge can prove exceptionally useful, ask first if we want you to share it and then ideally provide a list of links to a variety of different credible sources with no further personal comments or opinions.