Last weekend I got a frantic text from the family of one of my son's friends. Their daughter, who had had a liver transplant a few weeks ago was showing signs of rejection. They were at the hospital and were wondering if their son could sleepover because they weren't sure how long they needed to be there. I mean, we have been there, done that. Long time followers of my blog know that my husband is very sick. He has been really sick for the past 3 years and had 3 operations in 10 months.
I immediately said yes and as I was waiting from them to bring him over, it got me thinking. Now we were by no means best friends, but we knew them from hockey and our sons go to school together. I think the boys had had one sleepover before. Were we their first choice? They would have had neighbors who were closer. They have a large extended family. Where were all their close friends? We had never even gone out as a couple (they have recently split). I had never stopped round for a drink. So as I pondered their choice, I realized that what had happened to us, had probably happened to them. It also happens to a lot of families with children with special needs.
Slowly, or sometimes fairly quickly, depending on the type and severity of what has happened, your friends and a lot of times your family, stop coming round. They stop calling. They stop dropping by. I don't think they mean to. It just happens. They don't know what to do. They don't know what to say. So it's easier to just stop altogether.
If something happened in your family today, something where you needed a helping hand from someone, would you have someone that would help you? Would they still be there a year from now? Twenty hospital visits later? In the middle of the night when you have to rush to the hospital and need someone to watch the other children? Would you be there for someone else?
Take a step back and have a look at the families of the special children in your class or someone you know that has a spouse with a chronic illness. Can you tell that the mother is working on fumes because she's been up all night due to the fact her child doesn't sleep and yet she still has other children to care for and job to go to? Does someone snap at you or seem snarky because they have had to fight day after day to get services for their child and whatever you said was the straw that broke the camels back, even though it had nothing to do with you?
Over the years when I've gotten my class list for the fall, I've sometimes gotten notes that a particular family may be difficult to work with, demands too much, or may be just plain old mean and miserable. Nine times out of ten, most of these families have been through so much in the 3 to 5 years that their little one has been around that it's finally taken a toll on their emotional well being.
For example, for the most part I'm the most easy going person around. After my husbands second surgery, he was in critical care and due to some miscommunication, they wouldn't let me in to see him. By this point, I was running on fumes due to lack of sleep and the situation at hand. Well, I had a complete meltdown in the hallway of the hospital. Am I normally like this? No. But to this day, I'm known as the "difficult wife" who threw a fit in the CCU. I still to this day start to get a panic attack when he's in the hospital with the thought that they won't let me see him.
Our prior experiences make us who we are today and that may have not been who we were a year ago.
So how can you help? How can you make sure that this doesn't happen with someone you know? Here 5 tips that might help if you don't know what to say or do.
Offer to do something that needs doing around the house, like cutting the grass or walking the dog. How about the weeding the garden? Making lunches for the children to take to school? These are all things that get overlooked when you are overwhelmed. If the person refuses, do it anyway and surprise them. They may think that they are imposing on people or that people will think of them as weak or not able to handle things if they are not doing everything on their own. If you are dropping off food, make sure it's something that just needs heating up. The last thing you feel like doing after returning from the hospital with a sick child or spouse, is trying to figure out what to feed everyone.
If you go to visit someone and they are not in the mood to either socialize or talk, don't be offended. Sometimes there is only so much you can deal with in a day and once you have hit that limit, that's it. My husband has often said things that people have taken offense to because he was trying to hide the fact that he was in so much pain. When people are at their limits or are on heavy medication, the filter attached to their mouth may not be working to filter their emotions in socially acceptable ways. Don't take it personally and don't be angry with them. Realize that they are dealing with a lot and need empathy and understanding not judgment and criticism. Come back another time, don't stay away because of one bad visit.
When you come to visit, be mindful of what you say and talk about. If someone has been in and out of the hospital for years or is dealing with a sick child and endless doctor and healthcare visits, they may be resentful if you are talking about your latest trip to Hawaii, your brand new car, or your latest trip to the spa. Grabbing a shower or throwing on clean clothes can sometimes be a huge accomplishment. Take your cues from the people you are visiting. If you can tell they are becoming upset with what you are saying or seem uninterested with the pictures of your latest trip, then move on. You don't have to keep up an endless stream of conversation. Sometimes just being there showing your support is enough. Don't be upset if the medical issues of the child or spouse always seem to dominate the conversation. Remember, when that's all you know, that's all you have to talk about. Don't tell the person to stop "talking about it" or to "get over it" and "move on with your life". If you stopped by to visit to support your friend or family member, then support them. Don't belittle what they are going through as unimportant.
Especially in the case of the caregiver, make sure that you are prepared to help if you offer. I had so many people tell me "make sure you are taking care of yourself" but no one actually did anything. I had people tell me that were "disappointed" that I didn't come to a particular function or tell me that I just "need to get out and take a break". But no one actually came to watch my kids and husband while I left for a bit. He wasn't capable of taking care of himself let alone watching the children. They didn't understand that I couldn't go to their party because who would hook up my husband's IV or help him change his ostomy bag. Was I suppose to leave him at home suffering while I went to the spa to relax? The guilt of doing something enjoyable can become overwhelming. The same is true of families of special needs children. If you offer to help, learn to work some of the specialized equipment or procedures that are necessary so that the caregivers can have a break. Don't just tell them they need to "get out more". It's very hard to find babysitters that have medical training. If you invite them to something, like a birthday party, or at Christmas, know that if they say yes, you may have to do a lot to accommodate them. There may be an issue of accessibility into your house, a lot of equipment involved or the mental anxiety that comes with being afraid of something happening when you are out of your environment. Be honest about your feelings, let your other guests know that they are coming so that everyone can welcome the family in what might be a very difficult time in their life.
If you have gotten this far, then thank you for reading. This is a topic that is near and dear to my heart. Don't walk away from the people that need your help. Instead, find out how you can help support them.