Many people have commented on brave and strong I am to be blogging about this experience. I have even had some ask me why I am sharing so much personal information.
While sharing this journey has been very hard, I feel like no one talks about infant loss or babies being stillborn. When you lose a child at birth or a few months before, you join a secret society no one wants to be in. However, you are stuck there, and the only ones who want to talk about are the ones who have actually been through it. Other people just tell you not to withdraw from life or that you can always have another baby or it was meant to be. The people who are in the secret society know exactly what to say.
I want this whole secret society to end. People need to know their words can cause pain. They need to know what they should and shouldn't say. I don't really think they mean to be insensitive, but most are. I want people to be willing to hear about my Jenna, to know she lived and moved and was loved. Why should people look at my funny when I start to talk about her? She was my daughter, and I loved her.
My other reason for doing this is that I don't want anyone who is going through this to feel alone, especially those mothers and fathers whose child has been diagnosed with Trisomy 18. When I first got the diagnosis, I felt like I was the only one around. I had never met anyone who had a T18 baby. I wanted to find others who had been through what I had. I'm actually hoping to connect with people who have had Trisomy 18 babies through my blog. I would love to hear comments from you.
So, I'm going to be sharing my deepest darkest pain and most of my thoughts. I might even share details most people would not want to hear. However, I think those details and my pain and thoughts will help someone else, so I'm willing to forgo my privacy to do so. I don't want all of this grief to be in vain.
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3 comments:
I think there should be a list made, telling people what isn't appropriate to say to a mother who has lost a baby.
Some of the stuff I have heard just about knocks me on my bottom when I hear it. I want to scream at people!!
I hate the whole reasoning of, "Well, you're young, you can have more!" No kidding!! But that doesn't make the hurt of losing Cameron any less, you big a-hole!
Or someone who has lost a child at an older age. Someone said to me, "Well at least you didn't lost them when they were 3yrs old."
You're right, I didn't...and your point is what exactly?!
At this point, I'm trying to think of ways to get my point across to them while being as polite as possible. As much as I want to start throwing punches, I know I can't :)
Just know that you blogging and sharing your personal information is likely to be helping another grieving mother while also helping to heal you. We do it to pour our hearts out to the only people who will understand - ourselves and other mothers who have also lost their precious babies. It's our own therapy!
I am so sorry for your loss! My son, Christian passed away on Friday from T18 and the pain is difficult to bear. The Now I Lay Me Down To Sleep website (www.nilmdts.com) has a page on what not to say to parents grieving over the loss of a child. Like we are struggling to cope with the loss of our childen, our friends and loved ones struggle with finding the right words to comfort us. Not only are we left to pick up the pieces of our shattered hearts...but we must find understanding behind the meaning of seemingly heartless comments from people we know. I know your pain. Keep blogging...there is so much you can teach others! We must find strength in each other because, like you've said, we are all linked together in this secret society. I am always here for you if you want to talk about your precious baby girl. Love, Leah
I am so sorry for the loss of your daughter. I too lost a little boy named Tristan Asher who was born with Trisomy 18 on December 3, 2007 and lived 56 days.
I completely understand what you mean about people saying the wrong thing and it hurting or not saying anything at all. I love to talk about our little boy and feel we should, not only because he is still a part of our family but it allows us to keep his memory alive.
I was so fortunate last Fall to find a group of girls that were all pregnant with Trisomy 18 babies and we walked this journey together however it was lonely until then because we did not know anyone who had ever lost a baby either.
We created a blog also and you will find 2 lists on the side, one is babies that had Trisomy 18 - I didn't know if you had found any of them yet.
Again, I know the loss you are feeling and agree with the commenter above, blogging will help you heal AND it will help other moms that are grieving.
Sincerely, Yvette Hostetter
www.tristanasher.blogspot.com
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