In today’s society many families do not live in the same town in which they were raised and many live far away from any loved ones. In the first moments of the vasculitis illness becoming an unwelcome addition to your family, the actual miles away from a close relative become glaringly apparent.
The rareness of vasculitis, especially in children, often means getting medical care out-of-town at a hospital that has multiple pediatric subspecialists, such as pediatric rheumatologists, pediatric nephrologists and pediatric pulmonologists, not available in your community.
As word spreads of your child’s condition, well meaning friends and co workers will descend upon YOU via phone calls, text messages and unannounced visits to your child’s hospital. The easiest way to avoid this distraction and added stress is to ask your closest and most organized friend to be your families”official” spokesperson.
Having a seriously ill child in the hospital, you, the parent, become physically exhausted and emotionally raw. Having a spokesperson allows you the freedom to focus on your child and talk only directly to the people that YOU want to speak to. This is not to say that there will be some people that feel the need to circumvent the system but it will keep most of such encounters to a minimum. Your spokesperson as your point of contact can field all of the phone calls and questions starting with “What can I do for them?” to “What is he or she allowed in your child’s hospital room?”
Here are a few things that friends, co-workers, classmates’ families, fellow church members, and teammates’ families can help with:
• meals can be arranged and scheduled
• grocery shopping
• house cleaning
• pet care
• mail and newspaper pickup
• lawn care
For the families with children at home while the parents and ill sibling is at the hospital:
• day care
• evening care
• transportation to and from school and afterschool activities
• sack lunch preparation
• fun activities to help take their mind off of their sick sister or brother
Your spokesperson can set up an email group and Facebook page and can fill every one in at a set time, daily, as you can update your spokesperson several times a day. Knowing that your child’s room is small and the staff need to be able to do their job, your spokesperson can let your well meaning friends know that big stuffed animals, balloon bouquets, and flowers can be overwhelming.
If your child has been started on immune suppressing medications, you may wish to limit visitation and isolate phone calls to your child to certain hours of the day. Additionally, your child may be on a salt-restricted diet; therefore, a pizza party in your child’s room may not be the best idea.
Your spokesperson can keep up with the Get Well cards and all of the kind and lovely messages that will be emailed to you and your child during this time but you can’t emotionally, thoughtfully respond to each and every well-wisher in a timely fashion. These messages will become treasured items as you get through this very stressful time and will hopefully bring you comfort when you re-read them at a later healthier time for your child. You can always express your heartfelt appreciation via group email or post a “press release “when your child returns home”.
Even as out-of-town family members arrive to help shoulder some of your family’s needs, keeping the local spokesperson is a good idea due to being familiar with the area, your friends, and your schedule. Literally, this one person will be remembered as such a lifesaver for you and your family by reducing your stress level in one area as you are battling a more important one in another.