For the most part, I speak my mind. Always have, always will. I don’t really have an inside voice. I am not afraid to express my opinions, or say what others can’t. A successful dinner party at my house would involve an evening free of politics, and religion. If we just stick to entertainment, shopping, and travel, we are pretty much in the clear of any debates erupting.
It is not always easy for people to stop and think before they speak, and some people really do not realize that what they are saying can at times be very hurtful. This becomes especially true when a subject area is very sensitive. I have really tried personally over the years to not offend anyone intentionally, and if I do say something that upsets someone, I will quickly attempt to make amends.
I believe that there are many reasons why people say the wrong things to us time and time again. I think part of it is that they are ignorant to the topic, and the feelings of the person involved. It is hard to relate to a situation if you have never been in it. Sometimes they have no idea what to say, so something insensitive comes out. Others do not listen, and they just say the first thing that hits the tongue. And I also believe that some people are just mean, and to be blunt, stupid.
I would like to think that over the last 5 years or so, I have gotten tougher in many respects. It’s not to say that things don’t bother me, and comments don’t get under my skin, but I am able now to respond quicker with a retort, or in most cases just ignore it. I will also correct people and put them in their place if I feel it is deserved. When the events of Aug 2nd 2007 first happened, and for about 2 years after that, I cried about so many things people said to me, and I continued to dwell on comments for years. I used to think that the things people said were personal to me and my situation, but when I started to talk to other parents of kids with special needs, or who had lost a child, they would say they were hearing the same things.
Last week, one of the most devastating things that can happen in life, happened to a friend of mine. Her beautiful and amazing 2 year old son passed away suddenly in his sleep. He had been born at 24 weeks, and was later diagnosed with CP. He triumphed over many things, and was a very happy, smart and determined little boy. As I started to share the news with people, I began to hear the same comments coming up over and over again, and it took me back to when I lost Braden. All of those feelings came to the surface, and I started to become emotional. It was then that I decided I wanted to list a few of the things that no one should ever say to a parent of a child with special needs, especially if their child has passed away. This goes for friends, family, doctors, support workers, coroners, therapists and anyone else who comes in contact with the family who is going through this excruciating time. Especially to the doctors and other professionals. You wouldn’t believe how many of them are lacking a sympathy bone. I don’t care who you are, you should never say these things. I have so many to list, but I am only going to put my top 5 picks for now.
1) “Things happen for a reason”
Really? Because I would love to hear your reason for why a child dies at such an early age, or why he has such significant disabilities. Someone explain to me the brilliant reasoning that put us in this situation. And if there is a reason, it is probably not a good one. The reason we are in our personal situation is because of a vicious disease called Twin to Twin Transfusion, and because some doctor didn’t treat my son for jaundice. So unless you can give me a good reason that will bring me solace, don’t utter this phrase.
2) “At least you still have other children”
Having other child/children does not make losing a child, or having a child with disabilities any easier. It’s not like someone ate the last piece of pizza, but at least there is leftover Chinese food in the fridge. Or at least it isn’t raining out, or at least I didn’t break a bone. This is not something you say to comfort a parent. When Braden died, I heard over and over how lucky I was that I still had one twin left. Am I blessed to have Maclain? Yes. Am I lucky to have one twin left? No. I would say that is very unlucky. Oh, and while you are at it, don’t ask if we plan on having more children to make up for the one we lost, or the one with the handicaps. And if you ask me if I am going to have another child to help my typical child deal with the burden of caring for their sibling with the disabilities I may actually reach out and hit you.
3) “It could be worse”
Ya? Tell me more? What is worse than losing a child? What is worse than having one of your precious children severely disabled? And do not tell me you know someone who has it worse than me. You have no idea what I am going through, and you cannot at all compare my situation with anyone else’s situation. Easy to say when you have never experienced the loss of a child, or had a very sick child, or had a child pass away. Easy to say when you have typical children, healthy as horses, who are not faced with a disability. A child dying is the worst thing ever. Period.
4) “It is for the best”
Best for whom? People actually commented to me that it was probably best that Braden had passed away in utero. What if he was disabled as well? He could have had issues and our life would have been harder. Are you kidding me? Are you for real? The best would have been having both of my twin boys alive. I hear professionals tell parents all the time that their child passing away was for the best because of their significant health issues, or disabilities. Would I want my child to suffer? Absolutely not. But I would be surprised to ever hear from a parent that having their child pass away was for the best.
5) “ God doesn’t give you more than you can handle”
Well, guess what. He does give us more than we can handle. We just figure out a way to make it all work, and we don’t always do a great job of it. Does that mean that God only thought you could handle perfectly healthy typical kids, but He figured that for some reason I could handle losing a child, and then having another one with CP in addition to my typical child? Did I somewhere along the way do something to give Him the impression that I was looking for more to handle? I don’t think so. I am a pretty lazy person; I would rather not have to work this hard. It certainly wasn’t my work ethic in university, or the way I tackled my chores that may have shown Him I was able to handle more than the average mom. If given a choice, I certainly would not have chosen this for my path in life. Give someone else my share, I don’t really want this much on my plate to be honest with you.
I will stop there for now.
It truly is not easy for most people to know what to say when they are faced with an uncomfortable or upsetting situation that someone they know is experiencing. And as big as a mouth as I have, there have been several times when I just did not know the right thing to say. If you are at a loss for words, just be honest and tell the person you are trying to comfort that you have no words, and that you are sorry for their loss, or you wish you could make them feel better. Sometimes it is ok to just say nothing. A hug speaks volumes. A shoulder to cry on means the world, and just offering an ear to listen says more than you can imagine.