Our child has food protein-induced enterocolitis syndrome (FPIES), a severe allergy of the gut. His daily needs affect our daily life in massive ways. The process of Brighton’s diagnosis was one of the hardest times of our lives. We spent many draining hours at the doctor’s office and hospital which turned our life upside down.
Looking back on that difficult time, I feel like we learned a lot about how to support others in similar situations. I realize every situation and person is different, so what was helpful and comforting to us may not be to others. Here’s a list of things we found to be helpful when we were dealing with the unknowns, tests, procedures and endless doctor appointments.
1. Choose your words wisely. This is difficult to do, but made the world of difference for us. Everyone always has the best of intentions, but that may not come across to a tired, drained parent. Never say, “I know what you are going through” or “I’ve been there before,” because the reality is, you don’t and you haven’t. Even if your child has the exact same disease, your life is different. Your situation is different. Your child is different.
Never say, “Oh, it’s probably nothing,” “It will get better,” or “He’ll be fine and outgrow it.” These words are not comforting in those difficult moments. The truth is, it isn’t nothing. If there is a team of doctors at the children’s hospital running test after test on our infant, there is something. And yes, we pray Brighton will outgrow FPIES, but in the meantime, this is our life and it isn’t easy.
Honestly, the words that would help the most were when people said, “I’m sorry; that really sucks,” and “We are praying for Brighton and your family.” For some reason, it made me feel comforted when people acknowledged how much it just sucked.
Even though they weren’t in our shoes, they were acknowledging it wasn’t easy. They weren’t acting like nothing was wrong. They weren’t acting like they knew what we were going through, and they weren’t acting like they had our child figured out. They were acknowledging we were going through a rough time and that made us feel supported. The last thing someone with a sick child needs is to spend time talking to someone that is going to make them more frustrated, sad and exhausted.
So even though you have the best of intentions, choose your words carefully. It makes a difference.
2. Call. Text. Write an email. Send a letter. Be present. Some people wouldn’t call or text. They knew what we were going through, but they never acknowledged it. Mostly because they didn’t want to bother us or they didn’t know what to say. I get that. And I appreciate that. However, it can be hurtful when family and close friends just disregard the situation. If you are calling at a bad time, that person won’t answer. If you text at a bad time, they will text you later.
Be present in their life.
Ask them how they are doing, how their child is doing, and how the other kids are dealing with it.
Or just listen.
It would help me to talk to someone that would just listen. Sometimes these parents need to vent. They don’t need you to say much, they just need to you to listen and to love on them. Other times they don’t want to say anything. They haven’t fully digested the situation, but they still want to know they have people there to support them. Let them know you are thinking and praying for their baby. And don’t be offended if they do not answer or respond right away, or if they never respond. Understand they have a lot going on, but know that reaching out to them and supporting them means so much.
3. Be helpful. This is a tough one, because everyone appreciates help in different forms. Try to talk to that person about what would be most helpful, but give them options. Don’t just say “let us know what we can do or when we can help” because honestly, that person will never ask for help. Give them a few options and tell them you are going to help no matter what, so they need to pick what’s best from these options. They need the help whether they say it or not.
Some helpful ideas would be to bring a meal, drop off groceries, wash their floors, watch their kids so they can have a night out, or watch their other kids when they have a big doctor’s appointment, so they can fully focus on the appointment. Love on their children. These kids are feeling the stresses of what is going on. The biggest blessing to me was not only when a friend took my kids during the doctor appointments, but knowing my kids were being loved on and having a fun time while I was at the doctor.
There are also helpful things you can do without coordinating with that family. When we went through everything with Brighton, it was fall, and the beautiful leaves were all over our yard. I remember thinking how badly I wished a magic fairy would come and rake our leaves.
If you see their plants need watering, go water them. If their yard hasn’t been mowed in weeks, mow it. If their yard is full with leaves, rake it. If their gutters are full, clean them. If their driveway and sidewalks are covered in snow, shovel them.
You get the point. Just show up.
You don’t need to knock on the door or bother anyone — just be a blessing by doing the tedious yard work. Better yet, do it when you know they won’t be home. It truly will mean the world to them when they come home and see there’s one less thing they have to do that week.
If you live out of town and have the means, send a gift card. A gas card, since the amount of money spent on gas to appointments is costly! A $5 Starbucks card. A care package. If you don’t have time, quickly order some snacks off Amazon (you’d be amazed how difficult it is for these families to get to the grocery store). If you don’t have a lot of money, send a card to let them know you are thinking of them. Little things go a long way and having a community of supporters makes a world of a difference.
4. Show up and support the cause. We were very blessed to have amazing insurance during this period of life, so the cost of hospital and doctor bills were not a stress for us. I cannot imagine having the stress of the added cost of every appointment. All the tests, appointments with specialty doctors, procedures, treatments and surgeries add up. Some families have fundraisers online or in person. Show up to them. Give to them. Even if you only give five dollars, it will help them.
5. Pray for them. There is only so much that doctors can do and the rest isn’t up to us. God has done amazing things. Pray for those children and those families. It is the single most important and easiest thing you can do to help.
What about you? What would you add to this list?