What started as a routine surgery ended with a five-day stay in the Pediatric Intensive Care Unit. That was followed by four more nights on the surgical pediatric floor before being released.
Unless you've slept on a vinyl bed with your baby hooked to wires and tubes, you won't understand the weight that comes over a parent’s heart.
When life seems to sit precariously on a ledge, everything in you weakens and the world around you seems to crumble.
In a room of no privacy, you find the loneliest days. Fatigue is as constant as the stress of the unknown.
Normalcy for siblings is elusive. My husband was home with our older daughter to keep her from missing her first summer camp. We didn't see each other for ten days and with no cell phone at the time, we talked for just a few minutes a day.
You can imagine how thankful I was for friends who lived nearby and a cousin who was visiting. Their kindness saved my sanity. It was the strength I needed and the human touch I craved.
Several years and multiple hospitalizations later, we found ourselves admitted locally. By then, our having a child with special needs seemed to be an old hat to those around us. Again, we had very few visitors, but those who did made up for more than they will ever know.
One friend came a few days into our stay and sat with our girl so we could see outside the sterile walls. My husband and I actually headed out to dinner.
As soon as we got to our car my cell phone rang. My oldest daughter was hysterical. Her friend had just been assaulted while they were riding bikes and she needed us to come home.
It was another reminder that families rarely go through one thing at a time. Supporting friends sometimes takes creativity.
My ability to minister to other families in crisis has been shaped by the kindness of others. Those acts of blessing are multiplied in the lives of those receiving your gifts of love. They give strength now and courage to pass it on later.
I honestly believe that most of us have wanted to reach out. Sometimes it helps to know how.
Keep in mind the rule that applies across the board in all comfort situations: Always offer something specific.
Telling someone, “call me if you need anything,” is a beautiful thought, but it puts the burden on them to not only make the call, but to ask something you might not be able to fulfill.
It's awkward to reach out and ask for help, only to be told “I can't help you with that.” It's also taxing to have one more thing to do.
The following are suggestions on how to bless the family, which in turn will help the patient. I've asked some friends with experience for suggestions too:
1. Call and ask if you can sit with the patient while the caregiver engages in self-care. Pediatric patients can rarely be left alone. (This goes for patients with cognitive or communication issues as well). Just simple self-care tasks will help give strength to keep going. When you offer, feel free to suggest they take some moments to shower, grab a bite to eat, squeeze in a nap or take a walk outside. State up front how much time you have to offer and when you can be there. The more flexible you are the better since so much time is often spent waiting to talk to a doctor during a very small window of opportunity.
2. Bring in a meal from home or local restaurant. Although many hospitals have improved their food choices – cafeterias and fast food can get old quickly. Call first and offer specifics. “I'm going to stop by Red Robin, can I grab you a meal to bring up?” Even a stop at a local coffee drive through might be welcome. (This is for the caregiver. Patients should only eat what the doctor has approved.)
2. Offer to help out with siblings. Offering playtime or a place to stay overnight can be a lifesaver. Think about giving rides to school and other activities or helping the parent coordinate care with mutual friends. Remember to allow the siblings to share their concerns with you without answering too many questions. Any change of status or important news should come from the parents.
3. Offer to make and maintain an information page. There are websites like CaringBridge.org or carepages.com for long-term conditions. It allows the family to choose who sees their updates. Facebook has a “page” option that has become popular over the past few years. You can offer to share moderator duties with family until they feel comfortable managing it themselves. This is a great avenue for supporters to keep track of progress without inundating the family with questions. As moderator, you are able to screen unhelpful comments or answer basic questions. Be clear, this isn't a place to give care advice or opinions. Offers of prayer and support are what the family needs unless they specifically ask.
4. Coordinate meals for family at home. As always, ask the family their wishes. They may need someone to contact their church meal coordinator with a request. Some churches don't have manpower to provide help, so relying on friends and extended family is a great option. You may also opt to set up an online coordinator such as takethemameal.com, mealtrain.com or caringmeals.com. These often have options for out of town family to order delivery. The family may not want this every day.
5. Offer to bring a meal to the home yourself and use disposable dishes whenever possible. The family doesn't want to come home and be stuck with delivering dishes to their home. Send containers that you don't need to get back.
6. Drop by with a sack of groceries. If the hospitalization or illness is long, shopping is one more thing that gets neglected. Coffee, milk, bread, eggs or other staples may need replenishing. Remember, anytime you provide food, it helps to know dietary preferences and allergies. Toilet paper, facial tissue and even plastic baggies may be needed.
7. Offer to bring extra clothes to the care facility. If you are close friends, you may be able to get a key and pick up a change of clothes. This is especially nice if the hospital is far from home.
8. Create a care tote or basket. These are the items that still bless me to think about 13 years later. Although a basket looks nice, a tote can be useful and takes up less space. My care totes have evolved over the years and are always planned individually. You can use a nice reusable shopping bag if you can't locate a canvas tote. This can be a project where a group of friends can contribute different items. Be personal and creative.
Here is a list of my favorite care items. You don't need to include everything, but this is a good start:Warm lap blanket; thick or fuzzy socks; a real coffee cup (Styrofoam cups get old fast. Think about more than one for family and visitors; herbal and regular tea bags; a devotional or inspirational book;magazines or word game books; healthy snacks (think of things that can't be found in the vending machines); gift card for the hospital’s coffee cart/café; a preloaded cash gift card for hospital food or the gift shop; media gift card (Amazon or iTunes for movies, books and/or music helps pass the time); personal care items (A nice toothbrush, hand lotion, soap or shampoo is an extravagance after hospital brands).
It really is the thought that counts and in my experience, this really will speak louder than words.