I will start by saying that we have been absolutely overwhelmed but the outpouring of love, thoughts, and kind words since we began to share our story. Everyone has been more than helpful and it means so much to us that baby boy is so loved and in the hearts of so many of our friends and family. That being said, there are some cliche things that people have a tendency to say to people who are struggling with a loss like ours. Honestly, I think it’s because most people just don’t know what to say, and instead of saying nothing, they say one of these things in an attempt to provide something in the way of support or encouragement. I have always been a pretty open person and don’t mind sharing this intimate and difficult part of our lives (obviously, I started a blog). I don’t mind when people ask questions because they are genuinely curious, and to me it shows that they care. It’s so much more awkward for other people, I think, because they may not know in that moment, on the spot, how to respond in the best and most supportive way. Everyone undergoing a journey like ours needs a different kind of support. Some need and want prayers. Some want resources. Some want to be left alone. Some want to talk about it. And some just want you to give them a hug and say “I’m so sorry. Please let me know how I can help”. I can tell you, though, unequivocally, most if not all people do NOT need or want the following:
- God only gives you as much as you can handle. Oh, okay, cool. Here I was thinking I didn’t have a choice in handling the shitstorm I was given. Now that I know God only tests us within a smidge of whateverthehell our personal threshold is, I feel much better. Thank you.
- I could never do it, I don’t know how you do. Well, what would you do? Not trying to be snarky, but if you could never do it, what would your alternative be? Run away? Change your name? Fake your own death? The fact is, you could do it and you would do it, because like me, you would have no choice. There are a lot of things I could never do. These include things like run a 5 minute mile, wrestle an alligator and give up chocolate for the rest of my life. These things do not include taking care of my children and family to the best of my ability and working through a difficult and tragic situation my family is faced with.
- God only tests his strongest warriors. I must be the strongest MFer on the planet if this is true. Besides the fact that I refuse to believe in a higher power that is seemingly in control of causing so much pain and suffering, I cannot wrap my head around having to endure the absolute most heartbreaking scenario any human can face, just because I’m “strong”. I’m not denying that I’m strong, I’m denying that I’ve been put in this situation because of it.
- At least you have other children. I guess that makes this one expendable?
- It wasn’t meant to be. But my baby dying was? Cool. Thanks.
- God needed another angel. This God person is really fucking selfish. No one needs my baby more than I do. Of that, I am absolutely certain.
- I know how you feel. Unless you actually do, don’t say this. This journey is not unique to me. I understand that, and am absolutely open to those who have been through it to reach out, if they’re comfortable. Some have and their ability to share in my grief after experiencing it themselves is so powerful and means so much to me.
- My friend/aunt/sister/cousin/acquaintances baby had this, and she is 7 and doing great! Don’t give up! It is very likely that you have absolutely no idea what the hell you’re talking about. If that person’s baby had exactly what mine does, the chances of him or her “doing great” are slim to none. We’ve been given the poor prognosis, his heart has begun to fail, and sharing your friends situation where her child is thriving is not helpful. I’m overjoyed that he or she is doing well despite some sort of CHD diagnosis, but very surely it was not the same one.
- It’s all in Gods plan. God needs an intervention and some life coaching, then.
- Everything happens for a reason. This is possibly the worst one of all. I don’t care who you’re saying this to and in what circumstance, but it’s never ever helpful. Is the reason it’s happening to me because I’m a shitty person? Is it the work of karma? God smiting me? This bullshit phrase insinuates that there is a reason and that the individual is deserving of their unfortunate circumstance. I didn’t rob a bank and get sentenced to prison. Going to prison, in that situation, would have happened for a reason. Losing a baby? Having a sick child? Having to make the choices we’ve had to make? I cannot think of a single reason we’re deserving of this fate. Don’t, under any circumstance, tell me there is a reason it’s happening to me.
Know your audience and choose your words carefully when you’re dealing with someone experiencing any kind of grief. I have a pretty thick skin, personally, and have most certainly been told some of these things. I can nod, smile and walk away. Sometimes, though, it’s important to maintain some distance from people who actually do believe having a sick baby is “part of Gods plan”. I can’t nod and smile in an attempt to keep the peace with someone who’s views very obviously stray so far from my own. Everyone is entitled to their own opinions and beliefs and I’m not an overly sensitive person by any stretch of the imagination. If you don’t know what to say, “I’m sorry” or “I love you” are usually always safe bets.