**I will add that grief is extremely personal and a never-ending journey, therefore what "I wish I knew before" might not be what all others who are grieving feel. Please use this as a reference, but understand that grief is not black and white.**
1. Don't be so afraid of saying something wrong, that you say nothing. You may fumble your words or stumble with your thoughts. You may have written the text 5 times already, erasing it every time because it just doesn't feel right. You have absolutely no idea what will happen after the words leave your mouth so you decide to just keep your thoughts to yourself. Nothing you think you might say will make a difference anyway, so the days pass and you say nothing. Time goes on and now you feel like it's too late to reach out, so you continue to say nothing. Please reach out. Send an emoji if you can't find the right words. Don't be afraid. You may not receive a response immediately, please don't take it personally. The fact that you took the step to show you care means more than you'll ever know.
2. Don't be afraid of saying something that will be a trigger. Life after the loss of a child IS one big gigantic trigger. Whether you say something about a specific topic or not, I assure you our child is always on our mind, 100% of the time. Your words aren't a reminder, because our minds are on a looped reel regardless. By bringing up a potential trigger you are allowing us to share our experiences of our child and by letting us know that you are thinking of him/her we know he/she hasn't been forgotten.
3. Don't be afraid to ask me to relive an experience. You know there are some situations that you need first-hand experience knowledge, and you want to reach out to the bereaved mom, but you worry about bringing it up out of fear that she doesn't want to discuss it. Sometimes that might be the case. Give her the right of first refusal. For me, the life of a special needs parent has always been about sharing our experiences. I like many other special needs parents, are well versed in many areas of medical complexities and just because our child is gone doesn't mean we have lost all of those years of knowledge and experiences. Sometimes we just need an excuse to talk about our child. Sometimes, even if it brings back negative memories we still would rather relive it than fear declining and never being asked to share again.
4. Keep reaching out. Friendships are of course reciprocal, but after losing a child a lot of us are barely hanging on. There are days filled with tears, anger, and various other uncontrollable emotions. Sometimes we want to talk until you regret reaching out in the first place, but other times your efforts might feel unnoticed or ignored, but I assure you they are noted and appreciated so don't stop in your efforts.
5. Grief is messy and ugly. There is nothing organized about grief. There is no way to put a positive spin on burying your child. Your role is never to be able to rid us of the pain, the emotions, the challenges, or the complete chaos we have found ourselves in. You cannot change the situation, you cannot make it alright. When we are sad, cry along with us and when we laugh, know for that moment we are genuinely happy. When we are angry, allow us to feel that anger deeply. Never share platitudes that negate what we are experiencing. Grief is individual. Grief is hard. Grief is at times extremely lonely and suffocating. Grief is simply our new way of continuing on our parenting journey. Your role is simply to love us and support us along the way and trust me, we need you.
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