The easiest way to notify friends and neighbors is to delegate one person to do the job. Most parents are at their child’s bedside and want to avoid more emotional upheaval, especially in front of their child. Parents need to recognize that friends’ emotions will mirror their own: shock, fear, worry, helplessness. Because most friends want to help but don’t know what to do or say, they will welcome any suggestions you can give about what might be helpful (e.g., whether you want phone calls or cards). The more clarity you can provide, the less stress you will experience and the better your friends can support you. If you want visitors, for example, let people know when visiting hours are and whether there are any restrictions set by the hospital (or by you or your child) about who can come and how long they can stay.

There were many days I wanted to hide in bed and pull the covers over my head. I know everyone meant well and genuinely cared, but the constant stream of people through the house and phone ringing added to the stress we were already under. We already had a home care nurse coming five days a week, a physical therapist coming three days a week, in addition to constant phone calls to follow up on blood work and tests, appointments to schedule, and family members to keep track of. Bubba, our dog, loved all the commotion, but the rest of us tired quickly.

Not everyone you know will want or need the same level of detailed information. You may wish to encourage hospital or home visits from your closest friends, but ask others to wait for phone or email updates. However, think twice before leaving anyone off the notification list. Many parents report that people they barely knew ended up being some of their most helpful and supportive resources.

It can be helpful to choose a trusted friend or family member to provide information via email, text messages, or social media so you’re not exhausted with repeated phone calls and messages and can focus on your child. You may want to create a dedicated Facebook page that you and your “social director” control, where either of you can post updates and photos. This makes sharing information simple and quick. Consider making it a private page that can only be read and commented on by people you allow, giving you more control over your family’s privacy. There are also online services such as www.CaringBridge.com, www.CarePages.com, and www.LotsaHelpingHands.com that you can use to update friends, family, and supporters, and enlist help with meals, sibling child care, fundraisers, and other tasks. More information is available in Chapter 18, Family and Friends.