When Ben was born, in the few days he was with us, I searched the Net frantically for any stories of hope. I read up frantically on brain bleeds, on CP, on apnoea and bradycardia, on PDA’s, on his chance of survival, on his chance for any type of normal life. It was a frantic, desperate search for any help or support I could get.
Along the way I came across SA Preemies, a support group for parents of preemies in South Africa. I joined them and they gave me wonderful support. Then Ben died. And I had nowhere to go. It was then that I met Sheena, a fellow preemie mom whose beautiful preemie daughter had died. The two of us became the core of a support system for people who had lost their preemie babies. It was a small group, as South Africa is not a big Internet community.
It helped me tremendously to give support to other people. It helped in my healing.
However, it is becoming increasing hard for me to be that support person, or even to receive the news of other preemies lost. I know people think it would be easier for me to deal with the loss of Ben now that I have Adam and Kate, but instead it’s harder. Seeing how much they love and laugh, how they grow and develop every day, loving them so much, it makes me ache for the child of mine who will never get to experience that. It is physically painful for me to think that Ben will never laugh from his belly when I swing him around, or get excited when he sees his daddy. All these little things that Adam and Kate do every day make me realize how much little Ben has lost, and how much I have lost through his passing.
I can’t go there any more, I can’t see and hear other stories of preemies without a physical ache in my soul.
I want to withdraw myself as the support person, but more than that, I want to be taken off the email list. I feel terrible about this, but I can’t handle hearing the sad news of preemies lost, and to be honest, I find it hard to read the wonderful stories of preemies who have made it.
However, I am very torn. A part of me says that I am being unfaithful to Ben’s memory by removing myself from the group. Logically I know that is not true, but I am scared that people will interpret it as such. The only way he lives on is in my memory, and his father’s and family. And your memories as well. I don’t want him forgotten about, or not spoken about.
I don’t want to “move on” – please don’t say it, don’t even think it. You will never “move on” from the death of your child. Ever. Just as that child is from your flesh, just as that child owns a piece of your heart, their loss will always leave a hole that no other child can fill. Children are not replaceable or interchangeable. So it’s not about moving on. But it’s also not about wanting to live in that sad place forever, no, it’s not that.
I think it’s about not having to brave about the raw spot. I don’t want to be brave about it, I want to be focus my energies on just me and my family. I feel as if the energy it took for me to be brave has worn out, I need to not have to be strong for others. Maybe not forever, but for now.
So, I am going to ask them to withdraw me as the support person, and to be taken off the email list. It makes me sad though. It seems to be so symbolic in a way that makes me sad.
It’s very hard. I miss him so very very much. My first-born. My special son. Wish you were here with me, my boy. Love you deeply. With all my heart. Mommy’s little boy.