I know so many people don't know what to say to me. Most of the support that I have received has been positive and I am grateful for that! I thought it might help to write down some things for those who are afraid of saying the wrong thing. I completely understand how difficult it would be to come up with words to someone in my situation. I hope this helps. (Some things may apply after Carleigh passes.)
-Don't keep repeating those famous lines of "It was God's will", "God has a plan in this", "Everything happens for a reason", and "God never gives us more than we can handle". While all of these statements are true they are not very helpful. I know for some mothers it really bothers them to hear statements like this. As for me, they really don't bother me as much but hearing them over and over does get a little tiring. Do know that I trust God completely in our journey and since learning Carleigh's diagnosis my faith has not wavered but has grown stronger. If you are praying for us just let us know. Prayer is such a powerful tool and to know that we are in yours brings me comfort.
-Don't say "You can always have another one", "Be grateful that you have Kyndra", "Well, at least she passed before you got too attached" or "Just enjoy the time you have left with her". Carleigh is my precious daughter and she is not disposable. If I had a choice of losing her or stabbing my eye out with a fork I would take the fork. I would die for her just as you would die for your children. Yes, I am grateful that I have Kyndra and that she is healthy. Look at it this way-if your mother died in an accident and you grieved would that make you less grateful to have your father? I love Carleigh very much and was attached to her the very day I found out I was pregnant with her. I very much enjoy having her kicking inside of me. I don't take a single day we have together for granted. Do say things like I am a wonderful mother to Kyndra and Carleigh. Every woman likes to hear that they are a good mommy.
-Don't say things like "Things will go back to normal before you know it", "Time heals all wounds", "You'll be okay", or "Isn't it time you got over it?". Grief is not an emotion I enjoy. I wish I never had to experience this road but I am and it will be a part of me forever. Do realize that any grief I experience will have to fade on it's own and not on a specific timeline. I may still feel the effects of Carleigh's death for years to come and important days such as her birthday, Mother's Day, and holidays may be harder for me. I will be suffering a death in my family and not just some medical condition.
-Don't imply that Carleigh is an angel because she is not. She is a child of God. Humans cannot be angels and it says so in the Bible. I know a lot of people like to think of babies being angels to possibly make it easier to handle. Carleigh will not be "an angel in Heaven looking down over me". She will be happy in Heaven with Jesus and be carefree and that is exactly how I want it for her.
-Don't say that you understand how I feel when you really don't. Unless you are carrying a child who will die, you really don't understand how I feel. Do realize that even if you have experienced loss, or are going to, that everyone experiences grief differently.
-Don't pretend that this isn't happening and don't change the subject when I bring it up. If I'm talking about it then it means I want to. Pretending that this isn't happening to me just makes me feel alone. Also, don't try to avoid me or be afraid that mentioning Carleigh will make me feel sad or cry. At times I may be ok and other times I may break down. It's ok for you to show your emotions in front of me. It shows me that you care for me and Carleigh very much. Do acknowledge what is happening to us. Sometimes saying "I'm sorry" is enough. You don't need to be eloquent with your words. Just say it and mean it and that's all that will matter. Receiving kind notes, flowers, and gifts are appreciated but don't be resentful if I don't respond with a call or a thank you note.
-Don't say "I'm sorry for your loss" when my baby is still very much alive. This phrase is not appropriate when Carleigh is still kicking inside of me. Please save it for after she has passed.
-Don't be afraid to share your good news with me. I am happy good things are happening to you and your family/friends. Just remember that your good news will not cancel out my grief or make things better. Do realize that nothing you say will make me sadder than the reality of what will happen to my child.
-Don't suggest donating her organs. How would you feel if you were asked this about your child, especially when she was still alive? Do know that organ donation has caused an ethical debate because of the difficulty in determining brain death since babies with anencephaly usually have a rudimentary brain stem. This would be a personal decision and it doesn't need pushing.
Please remember that this is the worst thing that I have ever had to experience. It is going to take me awhile to figure out how to live with it so bear with me. It is usually the simple little things that you say or do that mean so much. It is wonderful to know how much you care. Also, never underestimate how much a hug helps.
It Is Well With My Soul
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