The Gift Of Time
I have a close friend who has three children that have rare diseases. In the center of my heart, I wish that I could cure her kids, do SOMETHING that would result in a cure and take away that heartache and hardship that she and her family endure. It takes time and research to find cures. I personally won’t be finding a cure for her kids. At the same time, that doesn’t mean that I can’t help her now. Right now, I can show my love and concern for her and her family in ways that are helpful by sharing my time.
The most meaningful experiences that we can have are when we take the time to reach out and care for others. When I gather my courage and reach out to help someone, particularly when involving my kids in the process, we make friends, help those in need, love those in crisis, and forget about our own worries.
Share your time with the PI patient in your life with these five suggestions.
Gather up a bit of your time and pick out a way that you can show love and concern for those struggling with rare or chronic disease in your life. Below are meaningful ways that you can share your time to help the loved ones in your life.
#1 Donate Plasma: Learn about it and do it!
For those that have a loved one or friend with primary immunodeficiency disease (PI), donating plasma is a life giving kindness. I don’t pretend to understand all the science behind it. But, I do know that the most effective therapies for those with PI rely directly on medication made from donated plasma.
Many children and adults with rare and chronic diseases are able to better manage their disease with plasma protein therapies that can only be made through plasma donations given by you and me. Most donations, after the initial one, take about 90 minutes for the donor (you and me) to give. Read about donating plasma, ask questions, and schedule the time to make a donation. Many of us have no problem giving blood. We should all be encouraged to give plasma as well. Personally, I just found a sitter to watch my youngest when I do this next week.
#2 Be mindful: Take a moment to patrol your germs.
You can help others by taking care of yourself when you are ill. A friend of mine has a child that is chronically ill, and I overheard her recently say, very frustratedly: I wish I could just CONTROL the germs!! Don’t people understand!!
Why was she so frustrated? Every time her child gets a cold, he ends up needing to be hospitalized. No matter what causes a person to be chronically ill, germs and getting sick only make life harder in managing health concerns. Be mindful of that when you are sick and your children are sick. Stay home and keep your children home when ill. That little, bitty low grade fever for your child could be a life threatening illness for another.
#3 Remember the family members.
Chronic illness affects everyone in the family. One of the most repeated concerns I hear from parents that have children that are chronically ill is that they feel like they can’t be fun or spontaneous with the rest of the family due to their child’s medical needs.
One mom said to me,”We rarely, if ever, have ‘extra’ to do family things like seeing a movie at a theater, dinner out, or other outings like that. My daughter’s rare illness takes a toll on everyone. My husband and I feel bad disappointing the kids, and the sick one feels guilty that they are the cause of it.”
- Invite the kids over to play or out on a special outing. We like to invite friends to go fishing with us.
- Be mindful of the fact that in helping the one that is sick, it might be best to help out a sibling that needs extra attention. Include something for siblings if you send a care package.
- Deliver a box of full of items meant for family fun. We put together a dinner and a movie set for a family recently, and my boys had so much fun picking out what to include.
#4 Help during a hospitalization.
Unfortunately, many of my friends that live with chronic illness find themselves hospitalized. There are several ways you can help when a hospitalization is necessary.
- We have mailed gift packages (the simplest of diversions are so helpful: think simple when sending things, no reason to be complicated and spend a ton of money).
- We have visited our friends when visitors are welcome (we recently took a Magic Show to a friend in the hospital).
- We have called the hospital room to say HI and to tell them our very corny knock knock jokes (this is a great way to reach out when visitors are not allowed).
- We have asked to help with “holding down the fort” while part of the family is in the hospital by helping out with siblings and household chores or with meals. One mom asked if we could simply pack up snacks for the week for her kids so they had something on hand to eat when they got home from school. That took like 10 minutes to do. So easy for us to take care of and a relief for the mom!
#5 Get to know their needs and what makes life hard for them.
Ask with a genuine intent to learn about their chronic illness and what makes life hard and easy for them. Listen to what they tell you and have the courage to reach out to them when you think they may need help.
We have a friend, Sarah, that we lookout for to make sure that she has what she needs. Most of the time, it is just a phone call to lift her spirits, and, during the call, she basically makes me laugh so hard my side hurts. Other times, it is simply the time it takes to double a recipe and bring a needed meal to her house. No matter what level of effort it takes to help out Sarah, she is always appreciative and says, “You just don’t know how much I needed your help today.”
Most of us don’t have the training or skill to find cures to those debilitating and chronic diseases that are hard to live with, but we do have time. It only takes a bit of time to start to get to know what can be done to help other. What ways have you found to help others with your time?
Sheila began her career in education by working with children and continues to serve as an advocate for children that are at-risk. She earned her BS in special education from The University of Texas at Austin and a master’s degree in education from the Harvard Graduate School of Education. She has taught in a variety of settings from a classroom in small town Texas to a psychiatric unit in Chicago. She is the mother of two young boys and is the voice of Pennies of Time where she shares the adventures of serving with her kids. You can see more of what they do on facebook, Google+,Twitter, and Pinterest.