Posts Tagged ‘mental-health’

(Note by D: When I noticed how many people this blog seems to have reached, I asked Karlee to do a post about what it means to be a support person to try to continue the education thing that I try to do in most of my posts. I have not edited this in any way. I thought straight from her was the best.)


D asked me to write up a post as to what it means to be a support person. At first, I stared blankly at my computer. It seems like common sense to me to just be there and offer support. I don’t think – I just do. D made the comment that “I don’t know what its like to be in your shoes, just like you don’t know what its like to be in mine.” And that is true. It doesn’t matter how much I empathize with her and the situations with L and G, I cannot truly understand her side. All I can do is be there for her in any way I can or she needs me to be.

I sat down and made a list of things that came to mind in regards to being a support for a parent of a chronically and/or terminally ill child. I never sat down and purposefully set out to put myself in this role. I met D while we were both pregnant. We didn’t meet in person – we started out talking on a pregnancy forum and eventually Facebook and on the phone. It was after L’s open heart surgery that we really started talking daily. We didn’t meet in person until this last September. I didn’t think it was possible, but I fell even more in love with L. She is one heck of an amazing little girl.

D didn’t have the time or energy to really explain to me what was going on with L in the beginning. She was far more concerned with making sure that her baby was getting the care she needed. At the start, it was honestly curiosity that drove me to learn about L’s various heart defects and Pulmonary Hypertension once it was diagnosed. The more I got to know D and L, the more I was driven by compassion and a desire to help. I know that D said in one of her previous posts that I know probably as much about Pulmonary Hypertension as she does – she never asked me to. It was my choice and one I am glad I made. I have made it a point to help educate others as well. That brings me to my first point: Be willing to sit down and RESEARCH. Don’t rely on them to educate you. Take the initiative. Be prepared that what you will find might be terrifying and heart breaking – and you aren’t the one living the reality. Just think what it means to them.

Don’t say sorry, especially with any sort of frequency. I know it the gut reaction anytime a person hears bad news. IT DOESN’T HELP. I know this is one of the things I hear D say frequently. It gets irritating to just hear “I’m sorry”. Say it like it is – the situation sucks (depending on your language, there may be more then a few choice words added there). It SUCKS that L has a terminal disease and it SUCKS that G is still in the NICU and is on the vent. “I’m sorry” comes off as patronizing and weak.

This seems to be pure common sense to me, but I am still going to say it. Don’t make promises you can’t keep. Only make offers that you are truly willing to follow through on. They have enough disappointment and stress in their lives. You are supposed to be taking that away, not adding to it. If they ask you to do something, and it is within your power to grant, DO IT. It doesn’t matter if it is as minor as sending chocolate. It helps. I have lost track of how many packages of chocolate I have sent D.

Make them laugh. Even when things seem at their darkest, laughter helps. This was one thing I have been unsure of until recently. D and I both tend to take our conversations off on weird tangents, often with hysterical results. A few days ago, I stopped and asked her if it was okay to try and make her laugh. This was when G was really declining quickly, and I wasn’t sure if it was appropriate. The last thing I want to do is add stress. “Laughter is always a good thing.” Alright then. Bring on the boob jokes.

Finally, develop a thick skin. Chances are, some of the anger and frustration will be taken out on you. Sometimes frequently. Don’t take it personally. Move on.