If you are a member of the Down syndrome community in any capacity, chances are you’ve been touched by a family who has spent time in the hospital or cared for an ill loved one at home. From congenital issues like heart defects and vision problems to the increased risk of respiratory illnesses, people with Down syndrome are more likely to be hospitalized or require medical procedures.
If you also care for a loved one with extra needs, you may not be able to help a friend who is enduring a hospital stay or illness. The good news is that they totally get that, because empathy is strong in our community! If you are in a season of your life when it’s possible to help, the number one rule is to do what the hospital family requests, no matter how bizarre it sounds to you.
When Grace was in the hospital at Christmastime, I asked family and friends to write me emails about their holiday plans. I felt so secluded from life and the world, I wanted some semblance of normalcy. One friend expressed concern that her travel plans might elicit bad feelings in me. But she wrote about them anyway and therefore did the right thing! Trust the hospital family. When they make a need known, honor that, no matter what your gut tells you.
There are several other practical ways you can support families in need:
Communication and empathy go a long way
Being in the hospital is an alienating experience. Time is strange, simultaneously dragging and flying by. Even the easy days can be grueling, noisy, and sleep-depriving. Knowing that someone on the outside is thinking of you and acknowledging the situation’s difficulty can be immensely meaningful.
- Send a message to let your friend know know you’re thinking of her. Somewhere in it, assure her that you know things are crazy, and you don’t expect a response. For bonus points: check in often; set a reminder on your phone if necessary.
- Be the point of contact for a group of mutual friends. Sending updates is time consuming, overwhelming, and emotionally trying. Offer to disseminate information to a larger group. Wait patiently for those updates, and don’t pry.
- Don’t be offended if your friends don’t want you to come to the hospital or the house. If you bring something to the house, offer to drop it on the porch; mean it and do it if asked. Your friends may be too exhausted to engage. They may want to protect their loved one from exposure to additional germs (or protect your loved ones from exposure to theirs!).
- Recognize that hospital stays are minimally exhausting and stressful with a possibility of being traumatic. Be sympathetic and open to your friend struggling with grief. This article gives some helpful, practical information on helping someone who is grieving.
Food is love
Is it just me, or is food preparation the first thing to go out the window when things get stressful? And yet, especially with small children, it feels like you eat approximately 250 times per day. Food is an excellent way to love a family in need.
- If they’re in a hospital, contact the facility and see if they sell gift certificates for the cafeteria and/or food service to the room. Especially with a little one, not having to leave the room to eat can be a huge stress relief.
- Use the hospital website or a Yelp search to see if the hospital has any commercial restaurants or coffee shops in it or within walking distance, and then email a gift card.
- Gift cards from food delivery services like Grubhub, DoorDash, Uber Eats, or Waitr can be used at any time. Not all services are available in all areas, so do a quick search of the hospital and/or home address on the site before committing.
- Notify the family ahead of time and agree on a time to drop off a meal. Or drop off freezer meals they can pull out when they need them.
- If you know a group of people familiar with the hospital family, consider organizing a meal calendar. Meal train provides a free online service for organizing a calendar.
- Drop off groceries. Or use a grocery delivery service or Amazon to have the basics sent home.
A note about siblings
Hospital stays are hard on siblings. One or both parents may be spending inordinate amounts of time at the hospital and may not be completely emotionally available when home. Siblings may be in the care of loves ones, perhaps not in their own home. Not to mention the fear and uncertainty surrounding their sibling’s illness.
- If sending something for the sick child, consider something for the sibling. I know costs add up, but even a sheet of stickers, a snack, or a card with his name on it can mean so much to a sibling who has been attention-deprived and lonely.
- If you know the sibling well enough, consider inviting her over for a play-date or meal.
- Offer to taxi siblings to and from school or activities, helping both them and their parents.
- Acknowledge how hard the situation has been for them and how well they have handled it.
Consider the adjustment period
Hospital life is tough, but it’s easier in some ways than readjusting to life at home. Some of the tasks formerly performed by hospital staff now fall solely on caretakers. There’s the stress of real-life (laundry, dirty bathrooms, return to work) plus often residual medical care and the emotional baggage of trauma experienced during the stay.
- Now is still a great time to send love in the form of food.
- Make a pharmacy run.
- Offer to hang out at the house while your friend showers, naps, runs to the store, or just steps out into the fresh air. Don’t be offended if he doesn’t feel comfortable taking you up on this. Parents of children with extra medical needs can be very protective, especially after a traumatic experience.
- When your friend feels ready, take her out for coffee, a drink, a yoga class, a movie, anything that will help her recharge. Don’t wait for her to tell you she’s ready; chances are she won’t. Keep extending invites; she’ll accept when she’s ready.
- Hire a cleaning service. I can’t afford to do this one, but if you want to be someone’s absolute favorite friend, I don’t think you can go wrong here!
A little goes a long way
Given our experience, I can promise that anything you do for a hospital family is valuable and more meaningful than you know. Many of the ideas in these lists are things that people graciously did for us, things I will never forget. Those little gestures offered comfort on days that had very little positivity. Although living in constant survival mode may have prevented me from understanding the full value in the moment, I can see in retrospect how much I needed that kind of support. If you know a family who could use your help, send the message, send the chocolate, hire the cleaning crew! Do whatever little thing you can do because it will be huge for the family that needs you.