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Friday, August 4, 2017

Helpful Things to Say to a Parent Walking This Path- Grief & Trisomy 13

Mama's Organized Chaos: A Babywise Blog
   
There are 4 types of people I've encountered during this terrible moment of grief:

1. The people that don't know what to say, so they choose to not say anything at all.

2. The people that don't know what to say, but they reach out and admit that, in order to still show their support.

3. The people that say unhelpful things.

4. The people that know just what to say.
 
Sometimes people ask me what is helpful- what they can do to help, or what they can say to help. The truth is I had no idea. I had to learn from the people listed in #4 above... because until those people showed up and said helpful things, I didn't know what would be helpful!

I think the majority of people are in categories 1 and 2. A very small percent live in the last two categories, and most in #3 don't mean to say unhelpful things- I do believe that most have good intentions. The people in category #4 truly amaze me. I try to point out their gift when I see it, because it's truly something special that we can all learn from!


So to start with, it is really easy to outline what is not helpful:

- Saying you understand. The truth is, that unless you have walked this exact path (which very few have), you do not understand. Even paths that are similar, are not the same. Just as an example...a miscarriage or having a baby with a birth defect, is not the same as having a baby with a condition like trisomy 13- a condition with a terminal outcome with hard decisions that have to be made. They are all devastating situations. But they are all very different roads. It's totally ok to mention those things, and totally ok to empathize and share that you "can only imagine". Those phrases are fine. Just be careful to not compare. And those of us walking a path also need to realize (as I'll talk about below), that when these things are mentioned, it's a persons way of showing support and empathy- and to try not to take offense. Easier said than done, I know...but I know I make a conscious effort to do so.

- Your opinion. Unless it is directly asked for, no matter how close you are to someone, the truth is your opinion doesn't matter and is not helpful. I know that sounds harsh, but it is the harsh reality of this. The only two people that have opinions that matter in a moment like this are the parents.

- Your stress. No matter what the topic, your personal stress is not helpful to bring up in conversation. There is not much worse than having a baby with a death sentence. So normal complaints about the weather, the typical daily problems we all run into, etc... just sound so trivial and annoying to listen to when you are going through something like this. I can't handle my stress plus yours in a moment like this. That's just the harsh reality.

- Praying that I make the choice you'd make. The reality is that you honestly don't know the choice you'd make in a situation like this until you are actually facing it. Praying that we make the choice you think is right, is just another form of judgment.

- Saying things like "everything happens for a reason", or "just be thankful for your other daughter". I call bullshit on this (pardon my language). Just because I have another child, doesn't mean it's ok for the new baby to have a death sentence. I read an article recently, which of course I can't find...but I loved the line it had in response to this - "Which of your children would you give up?"- definitely puts it into perspective a bit.

- Judgement of any kind. Even if you've walked this exact path, you do not have the right to judge our decisions. Every family has a different route that is right for them. Try to stay neutral in your comments or refrain from saying anything at all if you can't.

Ok so those are the easy things to outline and avoid. The hard part is knowing what to say and what to do for someone in a situation like this.

Here are some of the things that have been helpful for us:

- Reach out. This road is so lonely, and so isolating. And in today's world with texting and Facebook, it's almost insulting to not reach out in some way. I get it. I get that no one knows what to say, so I'm super understanding of that. But I have to say, that when people have reached out, it has been so comforting. And it's 100% OK to say that you don't know what to say, but that you wanted to let the person know you are there for them.

- Offer help. We may not always take you up on it, but it is comforting to know that I have a place to take my daughter if I need a moment. It is comforting to know that I have a support system around me to help me hold up the pieces.

- Food. It's something little- but it's a big gesture. It's hard to keep living a normal life. It's hard to have the energy and the strength to cook good meals, and keep moving forward. So, meals or even brownies are helpful so we don't spend our life savings on take-out LOL!

- Prayers and positive thoughts. We aren't a religious family, but we definitely don't take offense to people offering their love, support and positive thoughts- even if in the form of prayers. It's so nice to know that so many people are lifting us up and thinking about April Rey. Those that have kept the statement neutral are on the right track- "praying you make the best choice for your family", "praying you have strength through this tough time", "praying you find peace with your decision", etc. are all good neutral things to say.

- Notice us. Take a moment to notice the strength it takes to walk this path. This is one that I didn't realize would be so helpful, but it has been the MOST helpful thing that people have said to me. When people comment and notice the strength, the bravery, the selflessness, etc. it is incredibly helpful to keep me going. My husband and I feel miserable. We feel broken. I don't feel very strong right now. I don't feel anything positive right now, so when people take a moment to point out all of these good things, it helps me to see them, and it helps me to keep moving forward.

- Offering a listening ear.   Sometimes silence is what's needed. Sometimes we need to talk. Sometimes we need to cry. Offering a listening ear is a great way to reach out.

- Don't give up on us. Keep inviting me to playdates, keep inviting me to the things we'd normally do. Don't take offense if I don't come. But it's nice to know we're not forgotten and can continue on when we feel up to it. And be forgiving if we don't respond right away. In fact, it's great to say things like "Feel free to not respond..."- because we just don't always have the energy or motivation to do so.

- Saying the baby's name. April is our daughter. Yes it is uncomfortable, but we don't want her ignored. We don't want her forgotten about. So when I hear people talk about April, it makes my heart so happy. She's not "baby", and she's not something that never happened- she's "April Rey Villegas".

- Honoring the baby. However the parents are choosing to honor their little one, it is so nice to have people take part in that. We chose to start a fund with St. Jude in her honor, and it's been lovely to see people contributing to this fund. People have reached out with things like a Christmas ornament with her name on it, memory boxes, and even planting trees, and releasing balloons in her honor. Oh how the happy tears flow when people reach out like this and think of something so special!

Now I do want to mention that I think most of us walking a path like this (although I'll only speak for my husband and I), realize that most people have very good intentions. We assume with every person that reaches out, that that is the case. I've only felt truly offended or felt like someone was judging me a total of 3 times now! When you think about that, out of all of our friends and family, and all of the people that reached out from finding and reading the blog, that's pretty amazing.

And don't worry, I've taken the time to let those people know that they offended me in some way (so no it's not YOU if you are wondering LOL). I do this, because I assume these people didn't mean to judge or offend me. I assume they want to know if they have so they can refrain from doing so in the future. It's uncomfortable, but I feel like it's worth telling them so it doesn't happen again- to me or anyone else, if they truly did have good intentions. I know I'd want to know!

So, take comfort in the fact that most of you are doing the right things, and saying the right things whether you realize it or not. I know it's easy to question yourself in uncomfortable situations like this, but I've been pretty amazed at the lack of judgment and overwhelming support that we've received across the board- from those close to those I've never met.

Visit the trisomy 13 page, for all of the posts on April Rey and trisomy 13.



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💙Don't forget to leave a comment below! I love hearing from readers! Tell me what you thought of the post, share your experiences, and even drop a topic idea down for me!

Hey guys! I'm Katrina (aka Mama)! I love country music, snuggling on the couch with our dog, and playing with our daughter. I am a fibro warrior, a former chemistry teacher, I love watching college football (go aggies!), and I love being a SAHM. Connect with me on Facebook for more adventures!

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