Strategies & Tips for Family & Friends

It is human nature to want to help when someone you love is facing a tough time. It is also more than likely that they would benefit from your help and support. When offering to help, it can be a good idea to be specific. Instead of saying ‘let me know if there is anything I can do’ (which then requires the other person to ask for help which they may not feel comfortable doing), try saying ‘I’ll drop a meal over this weekend, when would suit you?’ or ‘I’m free to pick up your children from school on Wednesday.  Would that be helpful?’.  Always allow an opportunity for them to refuse your offer or make it at a time suitable for them. Giving a clear suggestion of what you would be willing to do though, makes it a lot easier for them to accept your help.

It can be difficult to know how best to help. A few suggestions that you could try are listed below.

If They Are In The Hospital

  • Offer to wash their laundry (or at least baby’s laundry)
  • Offer to sit with the baby/child while they have a shower or they get something to eat
  • If you bring clothing gifts for baby, consider pre-washing them first to save a job for the parents later
  • Give gift card/Uber eats voucher/food vouchers for hospital café
  • Bring meals
  • Bring coffee
  • Bring fresh fruit
  • Bring a labeled carton of milk, jar or coffee, teabags for the parent’s kitchen
  • Bring them a mug/plate/cutlery (hospital parent kitchen never seem to have enough!)
  • Mow their lawns
  • Water their plants
  • Offer to collect anything they might need from their house
  • Drive siblings to school/activities/take them for an outing etc
  • If their baby has lots of lines/attachments, offer to modify their clothing, or buy suitable onesies, etc
  • Offer to shop for anything they might need in the hospital or at home
  • Offer to help the partner at home with other children or drop in a cooked meal
  • Offer to babysit for the children at home so the partner can visit
  • Be available to sit with the baby while the parents speak with the doctors
  • Being a hospital parent is a lot busier than you might imagine so although well-meaning, giving activity books/crosswords/Sudoku/novels, etc might not be the best choice
  • Offer to help with minding/feeding/walking their pets.

If They Are At Home

  • Do laundry
  • Fold washing
  • Wash dishes/load the dishwasher
  • Bring a meal
  • Pick up groceries
  • Vacuum their house
  • Look after/pick up siblings
  • If appropriate, learn how to care for their child
  • Offer to sit with the baby while they have a sleep/shower/spend time with other children
  • Offer to accompany them to hospital visits so that parents can concentrate on speaking to doctors while you mind the baby.

Be mindful of any special requirements/limitations they may have when you are arranging an outing or party that you’re hoping they’ll attend. Children with GACI/ARHR2 tire easily and extended walking can cause leg pains in people with ARHR2.  A trampoline/bouncy castle may not be suitable for a child with heart complications due to GACI.  Let them know in advance what activity you have planned so that they can decide if it is suitable for their child.   It’s hard to tell a young child they can’t participate in the fun, so they may need to decline your invitation sometimes.  Please don’t take offense.

It is also worth remembering that things are not ‘better’ or ‘fixed’, just because the child has been discharged from the hospital after diagnosis. GACI and ARHR2 are lifelong conditions.   It is valuable to continue to check in with your loved one/offer help long after discharge has occurred.  Children affected by GACI/ARHR2 have many ongoing doctor/hospital appointments and offering to look after siblings during these appointments would be helpful.

Having a child with a chronic health condition can place a financial burden on families. You may consider holding a fundraising event or setting up a ‘Go Fund Me’ or similar donation page. How people respond to offers for financial assistance can be very personal. Ensure you have an open conversation with your loved ones about how they would feel about fundraising efforts BEFORE you begin to organize anything.

Share Information

It can be exhausting repeating your story over and over to the various concerned friends, family, and acquaintances.  If your loved one would like you to, save them this hassle by offering to share selected information to the wider audience. Be sure to be accurate in the information you give out and only share the details that they have asked you to. It might even be helpful to make them aware of this website to save yourself from answering the same questions again and again.

Just Be There

Sometimes it can help just to know you are there. Send a text message from time to time just to let them know you are still thinking about them (and don’t worry if they don’t reply or take a few days to respond).

Be a sounding board. Let them talk and unload onto you. You don’t have to have answers or try to fix things, just listen. Often acknowledging how rubbish the situation is can be more helpful than telling them ‘everything will be okay’.

Maybe they don’t feel like talking. Sitting in silence with them at their baby’s bedside is okay too.

Be aware of hand hygiene and germs. Stay away if you or someone close to you is or has recently been sick. Always wash/sanitize hands when entering their hospital room/house. Never touch their baby without their permission first.