There is a blog article making the rounds on Facebook for the Do's and Don't of what friends of parents with children in the hospital should do. I considered reposting it but I found that I actually disagreed with most of its points. For us too, Daniel is mostly cared for at home. Here is my modified version of the original.
1.
DON'T stop calling because you feel like you're bothering them.
DO check in and let them know you are here.
We pull back because we "don't want to bother" someone who is struggling.Let me debunk that myth: Your friend needs to hear from you. If you stop connecting, that communicates that their situation is unimportant. They will remember. If I don't hear from you for several months or weeks, I probably will be upset but I am not taking names like this lady. My son is very sick and consequently I spend an awful lot of time home by myself. A phone call or a visit with a bottle of wine is awesome. I don't expect you to check in all the time though.
2.
DON'T forget the diagnosis.
DO ask questions, remember the major issues and look them up.
Ask for the spelling of the diagnosis and care enough to be informed. You don't have to speak the medical language, but by understanding their child's issues, you will give a tremendous gift. And if you have questions -- ask. That shows you care. Just don't ask me if Daniel is going to get better. People who only have a vague idea of what's going on have asked that question. I have a hard time answering. Know that it's bad and it's going to get worse.
3.
DON'T forget a major surgery or test.
DO mark your calendar and send a message of support.
Someone remembering means the world. They will be blessed by your words, even if they don't have time to respond. This is especially true as they sit in the O.R. waiting room... waiting... See #1. If you remember, send a text or an email letting us know that you are thinking of Daniel and don't expect a response. We are not taking names. Hell, just like the Facebook post. On the flip side, please don't get made if I forgot something important going on with you.
4.
DON'T ignore them because you are scared they might cry.
DO have the courage to check in, even if it means you might hear emotion on the other end.
Our culture is afraid of tears. Please don't be. Just say, "I am so sorry that you are going through this. I care about you and your little one so much. I am here." Then be there. I have never felt like someone is ignoring me because they think I might cry. What kinds of people is this person friends with? I think people don't know what to say and so they hesitate in calling. Let me share that absolutely no one knows what to say. I have no idea what to say to other parents who have children with Daniel's disease. I don't expect you to know.
5.
DON'T forget that they are in the hospital when you are celebrating holidays.
DO recognize that they need love on special days.
While they don't want you to miss time with your family, they would treasure being remembered by a phone call, handmade card or video chat with everyone standing around a sign that says "We love you!" This one is good.
6.
DON'T believe that they "really don't need anything."
DO drop off a meal, clean or offer to take their kids. And you can always, always give the gift of prayer.
The majority of people have a very hard time asking for what they need, and knowing that they have food, a clean house or prayers lifted can get them through the day. See the request for a bottle of wine and a visit above. I am never going to ask you to clean my house and I would be weirded out if you did.
7.
DON'T overstay your welcome by insisting on a sit-down visit.
DO bring food or supplies over, understanding that they don't have the energy to entertain you, unless they are clear that they need to talk. Then stay, help and listen.
Their schedule revolves around the hospital, family, sleeping and meals, so stay aware that they have a lot to get done while they are home. If your friend insists that having you there is comforting, stay and help. Actually, please come over. If Daniel is super sick and crying, probably not a best time for a long girl chat. I like entertaining people.
8.
DON'T get your feelings hurt if they cannot answer the phone.
DO know that they need to reserve their energy.
Understand that this does not reflect how much they love you. They are just doing their best to stay afloat on very little sleep and zero free time. Totally agree with this one. Sometimes, I just cannot respond to emails.
9.
DON'T forget to respond to emails/texts/posts.
DO send a response to their messages saying something supportive. They are checking, because they need it.
While they may not have the time for one-on-one conversations, they will find great comfort in the middle of the night as they lie awake in the hospital checking messages -- reminding them that they are not alone(because they feel like it). Ok, there may be some truth to this one but I have never felt alone.
10.
DON'T simplify or dismiss their child's medical condition by saying, "Everything happens for a reason."
DO validate the seriousness of the illness by confirming that they are facing something very difficult.
Speak words of care and hope. Talk about the preciousness of the child and your love for them. Don't dismiss the crisis. Say, "I am heartbroken you and your baby are going through this. Hang in there and know there are so many people who care about you." No one has ever said that everything happens for a reason to me. I think I would deck them.
11.
DON'T act like you can relate to the seriousness of the medical complication unless you have been through the same thing.
DO acknowledge that you are trying to understand it.
Do not try to trump their story with one of your own. If you can relate, offer to walk alongside them. Very few people can relate to us and I think that scares people when they offer sympathy. I know it's not the same, but I think everyone who has ever struggled with their children or had a child in the hospital can relate to our experience. On the flip side, I want to emphasize that you can still talk to me about the problems with your kids whatever they are. I want to apologize in advance if it ever seems that I am one upp'ing you. My attempts to relate your experience to mine are not meant that way but to show that I understand what you are going through. Having kids is rough and heartbreaking at time no matter if your problem is small or large.
12.
DON'T tell them all of the details of your week at the beach while they are in the hospital. I am still a person who is still your friend. Please talk to me as such.
DO encourage them to do something "normal" if their child stabilizes. Offer childcare or a group date when they need it. I repeat my request for a visit and wine.
Remember, they haven't felt "normal" for a while -- and they miss it.
13.
DON'T showup with junk food show up to Johns Hopkins without food. The cafeteria is terrible and I have horrible memories of the Bertucci's café. It's where we waited for Daniel's MRI results. If we are at Frederick Memorial Hospital, normal food and decent coffee is near the hospital so we can fend for ourselves. DO care enough about them to bring healthy munchies. DO take a stroll around the hospital with them.
Since their self-care is suffering, healthy food and movement will help their bodies. Bring homemade vegetables, a tray of sandwiches or cut-up fruit. Help them air out their tired souls with a walk in the hospital's garden. Please don't bring veggies. I am beginning to think this person is a self-involved health nut.
14.
DON'T forget to wash your hands or to stay away if you are sick.
DO wash your hands when you walk in the room, and only walk in with perfect health.
Understand that a virus on your hands can mean a catastrophic infection for their child. This one makes sense, but do I really need to say it?
15.
DON'T forget to ask the parents how they are doing. It's ok if you don't.
DO ask "How are you?" Then wait for the truth after they say, "I'm fine."
People often forget to check in on the parents. They are struggling with exhaustion, confusion and fear. Be there for them by being present to their struggle. Just listen -- they know you cannot fix things. They just need love. Some days I may want to have this chat and sometimes not. See previous post on how Daniel is doing. There is a similar post that I will write some day on how I am doing Most likely, the response you are going to get is that I am doing as well as can be expected.
1.
DON'T stop calling because you feel like you're bothering them.
DO check in and let them know you are here.
We pull back because we "don't want to bother" someone who is struggling.
2.
DO ask questions, remember the major issues and look them up.
3.
DO mark your calendar and send a message of support.
4.
DO have the courage to check in, even if it means you might hear emotion on the other end.
5.
DON'T forget that they are in the hospital when you are celebrating holidays.
DO recognize that they need love on special days.
While they don't want you to miss time with your family, they would treasure being remembered by a phone call, handmade card or video chat with everyone standing around a sign that says "We love you!" This one is good.
6.
DON'T believe that they "really don't need anything."
7.
DO bring food or supplies over, understanding that they don't have the energy to entertain you, unless they are clear that they need to talk. Then stay, help and listen.
8.
DON'T get your feelings hurt if they cannot answer the phone.
DO know that they need to reserve their energy.
Understand that this does not reflect how much they love you. They are just doing their best to stay afloat on very little sleep and zero free time. Totally agree with this one. Sometimes, I just cannot respond to emails.
9.
DON'T forget to respond to emails/texts/posts.
DO send a response to their messages saying something supportive. They are checking, because they need it.
While they may not have the time for one-on-one conversations, they will find great comfort in the middle of the night as they lie awake in the hospital checking messages -- reminding them that they are not alone
10.
DON'T simplify or dismiss their child's medical condition by saying, "Everything happens for a reason."
DO validate the seriousness of the illness by confirming that they are facing something very difficult.
Speak words of care and hope. Talk about the preciousness of the child and your love for them. Don't dismiss the crisis. Say, "I am heartbroken you and your baby are going through this. Hang in there and know there are so many people who care about you." No one has ever said that everything happens for a reason to me. I think I would deck them.
11.
DO acknowledge that you are trying to understand it.
12.
DO encourage them to do something "normal" if their child stabilizes. Offer childcare or a group date when they need it. I repeat my request for a visit and wine.
Remember, they haven't felt "normal" for a while -- and they miss it.
13.
DON'T show
14.
DON'T forget to wash your hands or to stay away if you are sick.
DO wash your hands when you walk in the room, and only walk in with perfect health.
Understand that a virus on your hands can mean a catastrophic infection for their child. This one makes sense, but do I really need to say it?
15.
DO ask "How are you?" Then wait for the truth after they say, "I'm fine."
People often forget to check in on the parents. They are struggling with exhaustion, confusion and fear. Be there for them by being present to their struggle. Just listen -- they know you cannot fix things. They just need love. Some days I may want to have this chat and sometimes not. See previous post on how Daniel is doing. There is a similar post that I will write some day on how I am doing Most likely, the response you are going to get is that I am doing as well as can be expected.
