Having a child who is in and out of the hospital has brought out the best, worst, and awkward things people have said and done to show their support. Having never been through something like this before, I can think back to situations when I was on the other side, and now think how I said some of the most awful things to help support others when they were going through such a roller coaster. I thought it might be helpful to share some positives and negatives so that others, who have not been through a similar situation, have some ideas.
This Part I will be about things to say, or not say to help. To see Part II, click here.
1. Make contact with the person. Then once you've made contact, continue making contact. You may think "they have a lot going on, they do not want to hear from me." Not true! It is true that we have tons going on, but it means so much to get notes, emails, cards, voicemails, texts from people. Being in this situation, it as if our worlds are on hold. It is hard to see that everyone else's lives are moving forward - people are enjoying going out to dinner, going on vacations, going shopping, even grocery shopping - so to hear from someone makes me realize that although their lives are moving ahead (as it should!!), they still can take a step back and realize that our lives are on hold. Call! Email! Send cards! I would recommend limiting text messages. It is really hard to keep up with them. Going along with this, it is okay to not have the right words, or not understand what to say. TELL THEM THAT! It is okay for people to say to us "I really do not even know what to say right now."
2. Validate the person's feelings. Being in this type of situation means having ups and downs. I cannot tell you how often, when we are having a down moment, someone says "but look at the bright side," or "you have to stay positive." I know deep down people are trying to help. But it is okay, normal, healthy to mourn things. Validate their feelings. It is okay to say, "I am so sorry this is happening." It is okay to say "well, this sucks." It is okay to say, "this is not fair." Because at the end of the day, nobody should have to go through this. Ian and I have said over and over again, that no matter how much we dislike a person, we'd never wish this on them. Do not try to brush their down moments aside. They are very real, and part of this journey.
3. Give them the benefit of the doubt. When you know little about what the person is going through, ask. (See 4). And do not assume things. When Luca was discharged from the hospital, people said, "I heard she is home from the hospital and all better. Congrats!" While their intentions were good, they clearly did not understand the severity of Luca's disorder. My feeling is if you are not going to look into, or ask questions about what the person is going through, do not assume. Give the person the benefit of the doubt by assuming they are still going through a lot. The worst that can happen is that they correct you and say "oh it isn't that serious" or "oh she's all better now actually."
4. Ask questions. This goes along with #3. It is great for people to ask us questions. Considering how much information there is about this, it is understandable to have questions. And honestly, it helps us sort through information if we share it with someone else. It is okay to ask lots of questions - about the disorder itself, about prognosis, about our daily routine. It also shows that you are actually interested, and care.
5. When you say your prayers are with someone, mean it. I used to say I was praying for someone, then go about my day without much thought about it. Now, when I say I will pray for someone, I immediately close my eyes, and do exactly that. If you say it, mean it. Also - the phrase "my thoughts and prayers are with you" is totally overused. The intention is great, but seriously, as a community we need to come up with a better phrase. When Luca was in a coma, people said this nonstop. Then finally someone's response was, "well, this totally sucks." It made me laugh. Some people might think it was insensitive - but it was real, and totally the truth. It felt good that somebody else felt the same way we did.
6. Caution using the phrase: everything happens for a reason. I know people believe this. And even I do to an extent. But when your child is suffering, when you are suffering, it is about the last thing you want to hear. To hear that there is a reason for your child to suffer - quite frankly, in that moment, there is never going to be a good enough reason to justify your child suffering. While I firmly believe we were chosen to be Luca's parents, and I will make good of a very bad situation, I do not like hearing that Luca has this disorder for a reason. It does not make sense to me why some people get to have healthy children, while others do not. I just would not recommend saying this a lot when someone is right in the heart of hell.
7. Share what is going on in your life while practicing sensitivity. Ian and I expect other people to be having fun in life. Everyone's lives should be moving forward! We like to hear about what is going on with you. It makes our lives feel a little more normal if our friends reciprocate after we've given them a laundry list of everything happening with Luca. That being said, be cautious about how you say it. If you are going to complain about something going on in your life, or vent about it, do it cautiously. Example: DO say: "I cannot believe my baby has to get a shot today. I don't know how you guys watch Luca getting IVs in her scalp and have to give her shots twice per day. It breaks my heart and we only have to get a couple shots every couple months." DO NOT SAY: "I had to leave the room because I just cannot stand to watch her. I was sobbing and just cannot believe my baby has to endure that." Get the point? We totally expect people to vent and we like hearing normal parent worries - but show a little compassion at the same time.
8. Do not compare unlike situations. When I was explaining how scared I was of losing Luca, I cringed when I heard the response from someone. Response was something about totally understanding because she is afraid of losing her 97-year-old grandma who had recently undergone surgery. While it is incredibly scary and sad to lose anybody in your life - comparing my 6 month old daughter to someone who has had a long, happy, healthy life is not right. While I understand the person was just trying to relate, it is okay to not know how to relate.
There you have it. My recommendations of things to say or not say. At the end of the day, even when someone has said the absolute wrong thing, I appreciate that they are saying anything. Most of the time, a person's intentions are great, but wording and follow-through are not as great. We recognize that people are trying, and that is what matters!
What would you add? Have you ever been through something where people say the absolute right or wrong thing?