Oneparent recalls the stress and exhaustion of those first days after diagnosis ?and at this worst of all possible times she was constantly fielding phonecalls! What she desperately needed was to focus on taking care of herson, but it seemed everyone she knew wanted to know what was going on. Not only did she have barely a minute to spare,but telling and retelling the story of her child?s diagnosis was nothing shortof traumatic.
Thereare several strategies you can use to communicate with others while stillreserving your time and energy for your sick child and family.
Oneof the best ways to keep people informed, especially if you have a largenetwork of friends and family, is to start a blog or website dedicated toupdating folks on your child?s progress. This website will enable lovedones in your life to ?check in? on you and express their support withoutcalling you constantly. It will free you up to focus on your family, as afew minutes of typing will instantly update everyone you know! Someparents appoint a very close relative or friend to handle the updating of thewebsite or blog for them.
Themost popular websites for this type of communication are CaringBridge and Care Pages, both free and managed bynon-profit organizations for this specific purpose. If you think one of thesesites might be for you, browse both, because their formats are verydifferent. However, both are extremely user-friendly, even forinexperienced internet users, and easy to set up. You can post journalentries as many times as you want-- hourly, daily, weekly, monthly ? whatever suits your needs. Thesejournal entries are instantly sent to the e-mail inbox of anyone who subscribesto your child?s site.
Youcan also upload pictures, set up links to other websites of interest, and, mostimportantly, receive messages in the online ?guestbook.? You will findthat the messages in this guestbook become lifelines at times -- knowing thereare so many out there that care about your family can be very comforting. If you wish, you will also be able to connect in this way with otherneuroblastoma families. This can become an important source of supportand information, as it will enable you to build a network of resources thatwill last throughout your child?s treatment and beyond. See ?FindingOther Neuroblastoma Families.?
Thereare also sites available for forming your own blog, such as Blogspot. You might like to try one of these if you want more control over yourown format, but it will probably take a little more time to put together. One downside of a blog is that anyone in the world can view it with a littlegoogling, making it more public than a CaringBridge or Care Page, since aviewer must be aware of and register with the latter services. Just knowthere are many choices when it comes to blogs, and setting one up will save youtime, energy, and emotion. You may even find that journaling yourexperiences publicly will itself be therapeutic, allowing an outlet for youremotions on good days as well as difficult ones.
Asimilar option is simply creating an e-mail group. This operates ineffect like a blog, but is considerably more private. You select therecipients of your e-mail by creating a group, and hence the people receivingyour child?s updates are those you approve (and whom you can advise on whetheryour updates should be further circulated or not). Although you cancreate some filters on a blog or website, your own e-mails are always morerestricted. Another plus is that each e-mail can be tailored for aspecific set of recipients. You can select your group based on theparticular message, giving you even more control of the information you send.
Ifyou don?t have internet access handy, or if talking to people helps you cope,consider a phone tree. By ?assigning? calls to several persons closest toyou, you can create a communication circle that still gives you extratime. For example: you call only your parents, in-laws, and bestfriend. Your parents call your aunts and uncles, your in-laws call yourhusband?s sibling and grandparents, your best friend calls your closest workcolleague and college roommate, with each of them calling other designatedpersons, and so on. This way everyone is informed without keeping you away fromthe person who needs you most -- your child.
Don?tforget the power of your child?s own words and messages in keeping peopleinformed. When he or she is up to it, consider helping your child createcards, send e-mails, update your website, or make phone calls to people theywant to talk to. Many children feel bombarded by the constant attentionduring their treatment. Reciprocating the gesture may help them sorttheir emotions.
Whateverdecision you make regarding how you communicate, be sure to keep a record ofwho should be contacted if there is an important update. Don?t forgetyour child?s ?extended family?- e.g., pediatrician, teacher, soccer coach,etc. Also include your or your spouse?s co-workers if possible. Ensuring certain important updates are communicated can be invaluable when youare required to be away from work due to your child?s treatment needs.
Finally,don?t be afraid to make your own needs known. If you are too harried or preoccupied for calls and visitors or to keepothers in the loop, or if you need a specific type of help, don?t shrink fromletting people know. Many people aredesperate to help but have no idea what is needed -- and sometimes there arepeople who do not grasp what is not needed. You have too much on your plate toworry about the perceptions and needs of so many others. Doing what is best for you and your family isthe goal of those who really care about you, and such people will understand ifyou have no time for them or share that a particular thing is not helpful.
Itcan be hard to find the time or the words to communicate your needs to others.Sometimes a close friend or family member can help run interference. One aunt, after helping her family during herniece?s three-year battle with neuroblastoma, put together a list of suggestedways to help the family of a sick child, as well as a list of things not todo. This list can be distributed tofriends or perhaps can just give you some ideas. See ?Reaching Out and Accepting Help.?
Thereis no right way or wrong way to communicate with others about your child?streatment and your family?s needs. Each of us is unique in ourpreferences and the amount of privacy or support needed. Of course,whether stressful or comforting to you, it is very likely that throughout yourchild?s treatment you will continue to receive calls and messages from peoplewho want to know how things are going. On the one hand, these inquiriescome because people care so much about you and your family -- so, although itdoesn?t always make your life easier, do keep in mind that family and friendshave your best interests at heart and only want to help and be involved. On the other hand, keeping everyone in the loop may at times become difficultfor you to handle. We hope the suggestions included here will help youfind ways to strike the right balance and relay messages and information to allthose who care about you, yet still maximize your time with your sick child andfamily.
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