Dos and Don'ts of Helping Children/their Families Who Have Chronically Ill Child

Melisssa,
I'm sorry your daughter is going through so much. I think the list is a great idea. My first daughter is fine now, for which I'm grateful every day, but she was born with an intestinal obstruction and she had 19 hospitalizations, two major surgeries, several smaller procedures and a lot of difficult times before it was finally resolved through the second surgery when she was 16 months old. So, I understand some of what you're going through. Here are my suggestions:

DO write, email, call, or otherwise send support. DO NOT expect a call back right away.

DO send little gifts for the child. DO NOT do this without checking with the parents first (for example, my daughter was on an extremely restrictive diet and couldn't eat most treats people offered her).

DO provide help for the parents when you can. Clean their house, babysit any other children, drop off meals. DO NOT just vaguely say "Let me know if you need anything" and leave the responsibility to ask with the parents.

DO offer good thoughts, prayers, and positive ideas. DO NOT research the child's condition on the internet and offer medical advice (even if you're a doctor) unless the parents ask you to. It can be very upsetting to have relatives give information from random sources that contradicts what your child's specialists, who know her case, are telling you.

That's my list so far. Good luck to you and your family.

K.

Sounds like your daughter has had a lot to deal with, and consequently you guys too. It can be such a strain on families, but what a great idea to come up with a list.

Our 15-month-old has chronic lung disease, failure to thrive and has been hospitalized six times since last January. We are constantly in the doctors and hospitals.

For us this is what has been helpful:

DO: When the child is in the hospital call or visit. Hospitals get very lonely and you are dealing with challenging situations.

Do: Make a basket of fruits and veggie snacks and drinks if they get put in the hospital suddenly. The snacks at the hospital suffice for awhile, but we have gone and I haven't been able to leave for up to a week before.

DO: If there is a sudden hospitaliation, ask if they need anything brought up to the hospital like clothes, toiletries, etc.

DO give very specific offers. One lady who was bringing us dinner called an hour ahead of time to see if we needed anything (milk, eggs, etc.) when she went to the store before heading to our house. Sometimes we can't leave the house except for docs appointments for weeks at a time with our sick child and it is very challenging when you remember in the middle of the day you are out of something.

DO: Make a frozen meal for the days when they are overwhelmed with an illnesses and doctors. When our son gets sick, sometimes days that would have been perfectly normal are suddlenly rushed and we can easily spend the entire day at a hospital or doctors offices. I can't tell you how many times when one of these unexpected things pop up I run home at 6:30 and think what the heck are my kids going to eat tonight?

DO: Visit or do something that is within the parameters of what they can do. Plan a playdate at their house or yours. Etc. DON'T: Be offended if those plans have to change at the last minute. Unfortunately during the winter ours often do and it does no good us complaining because that's life right now for us:).

DO: Suggest to meet for coffee or dessert one evening when the parent can get away just to give them a bit of a break. Or offer to watch the kids while they are settled. We actually have very few people who can watch our children right now and any break we get is amazing. As a couple we only get out maybe once every three months.

DON'T: Just vaguely offer to help but leave the parent in charge of coming up and asking for things.

DON'T: If you are far away, don't tell them every single time how much they wished they could help if they were closer. A few of my relatives say this 3-4 times a day when things are difficult (all of them live 1000+ miles away). I appreciate their willingness to help, but when we are dealing with an accute illness, hearing that once is sufficient. More than that just adds to the stress level for me.

Hope these ideas add to your list and hope things improve for your daughter! I would love it if you could publish the list when you are done. People are always offering to help, but even though we really need it, have a difficult time coming up with ideas:)

I think an important "do" in the case of reaching out to ANYONE chronically ill, young or old, is to ASK what can I do for you. Because most people will respond "thank you, if we need anything I'll let you know", (then they never feel comfortable asking for help) you then should also pick an aspect of life you can help with and DO it! For example, "hey, plan on me bringing you dinner every other Monday, starting tomorrow" or "I'm coming to your house on Saturday afternoon to pick up your laundry and I will bring it all back on Monday" or "I will make sure you get to your weekly doctor's appointments every Tuesday" etc. I think people are very grateful if they can count on certain things at certain times so they know that is O. less thing they need to be concerned with/spend time on.
So, I guess, to sum up my DO: Commit to helping with or doing a specific task and then stick to it and follow through.

My sister was 11 when she died of leukemia. I know that first thing that i can think of is to treat them like a "normal" child. They do NOT want to be treated differntly.

Do you know a child that is terminally ill??

One thing I read and feel is very true is not to say "let me know if there's anything I can do", instead "why don't I stay with the kids while you take ____ to the doctor" or other specific offers like that.

I have a child with an illness. Sometimes you just listen to them. That is the best thing in the world. Somtimes a person just need someone to listen to how they are feeling in the heart. Because alot of times its the fear of the unknown.

A "do" would be to not ignore the family because you don't know what to say or do. When your child has a chronic issue it often prevents you from doing "normal" things: playdates, birthday parties, etc. And the other families just go on with life while you are busy trying to deal with your child, therapies, etc. Send an email once in awhile saying "we are thinking of you" and ask HOW you can get together with them in a way that works for them, maybe a one on one visit rather than your usual "group", or finding out if there are food allergies and not planning an afternoon at McDonald's playland.

Another "do" is to keep in touch with them mom, if nothing else. She probably needs all the friends she can get. Offer to meet her for coffee/tea or dinner once or twice a month - a mom's night or afternoon out for an hour or two. She needs the break!

L.

We have a 4y. son that has asthma & food allergies, the one thing we really make sure is that he is not scared of his nebulizer , and that he can show others how he uses it. Also if we are not with him he asks if the food he is getting has any eggs or peanuts in it because he will tell you he is allergic to them.He understands that the medication he takes daily is to help him, so he thinks he is responsable for making himself feel better.It seems to work for him.

You've gotten a lot of good ideas. My son has leukemia so we have had our share of long-term health issues. The suggestion about offering specific help is an important one in my opinion. When we are overwhelmed it is hard to think of things people could help us with. However as soon as someone says, "I'd like to do X for you," we are much more inclined to accept the offer. A few other things that have helped us:

DO check with the hospital to see what kind of gifts can be sent. Flowers were not permitted on my son's oncology ward.

DO abide by any visitation restrictions at the hospital. As much as you would like to visit the family and the patient, please don't add to their troubles by visiting them while you are sick, even if it is only a cold.

DO invite the family in gatherings. Some of our relatives did not invite us to gatherings, birthday parties, etc for several months after our son's diagnosis. These are events we normally would have been invited to. They were trying to be well-intentioned and didn't want us to feel bad that we couldn't attend. The problem was it hurt more to not be invited than to have to make a decision not to attend or to find a workable solution (for instance, perhaps I could have attended with my daughter while my husband stayed with my son). Of course, we knew that our family didn't mean to hurt us, but it was still very bothersome.

DO talk about things other than the big health issues. Hearing about my nieces and nephews reaching milestones and doing well in school or talking to my neighbors about what was happening in their lives was a welcome distraction. Talking about my daughter helped to balance out my emotions. Yes, I had a lot on my mind, but having a normal discussion about everyday things helped to keep some sense of normalcy, kept the lines of communication open, and allowed us the chance to reciprocate the friendship. Our lives might have been changing and our biggest concern was caring for our son (and daughter) but there are many facets to our lives. Staying involved even to a small degree was important to us in staying healthy emotionally.

DON'T forget about the siblings. Many times they get lost among all the attention paid to the sick child. The healthy children are affected as well. They may notice the emotional roller coaster their parents are on, they may see physical changes in their siblings, they will notice they are spending less time with their parents and that there are big changes in their routines.

DON'T say "everything will be okay" or "I know how much this hurts". Although they well-intentioned statements, you most likely don't know that everything will be okay and the pain/fear/concern/anger parents feel when their children are sick is unique to each family. Your best bet is to be silent and listen while the family talks. If you need to say something try, "I'm sorry you are going through this," or "I love you and am praying for you."

Many blessings to you and your family.

well i know that i personally suffer from Fibromyalgia - and there are good days and bad days - and just the respect that "something" is there and i am not "exagerating" is half the battle - and i agree - offering to help is sooooooooooooo much better than ignoring it - becasue ignoring mit makes me feel as though i am not worth anyone's time or effort.