Thursday, August 21, 2008

MISS Conference-Phoenix Arizona-September 25th~28th

I will be speaking at the MISS Foundation Conference in Phoenix Arizona, September 25th-28th. If you are a bereaved parent, I urge you to attend this conference. If you are a NILMDTS family, and would like to volunteer at the NILMDTS Display Booth, please contact me. I attended this conference in 2006, and truly walked away with my eyes opened. I would like to share with you something I wrote after the conference:

June 20th, 2006
"I attended the MISS Foundation conference in Phoenix Arizona this past week. This conference was attended by a wide range of people. Professionals, medical personnel and parents. Not just parents that have experienced the death of an infant, but parents that have experienced the death of a child at all ages. My original thought and plan was to be there to only display the information of Now I Lay Me Down to Sleep. I had not planned on attending any of the sessions. But I did end up attending several sessions and listening to a few of the various speakers and presenters.

My last session was with Hawk and Kara Jones, parents to Dakota and founders of KotaPress. Their session was called Poetry Slam. I thought this would be ‘fun.’ They gave us ten various words and twenty minutes to come up with a piece of poetry. It was harder than I thought. Towards the end of the session, we broke up into two separate groups. Again ten words. As a group we had to compile a poem using those words. We decided that each of us would take a word, and build our own sentence. We decided that there would be no main topic. Some of the words I remember were ZEAL, PRESCRIPTION, RED, DREAM…, Each person started writing.When we finished we were asked to read our poem. We went around our group, starting with the person that had the first word, and started reading our sentences. The end result was amazing. The pain, anger, heartache and despair over the death of a child.

Then there was the Memorial Service. There were tables set up where parents could set up a memorial to their child. I did not bring anything personal of Maddux’s. (remember I wasn’t there as a bereaved parent.) I asked the security man to let me in the exibit room, so I could get into some of NILMDTS’s display items. I took the image of Mike, Maddux and myself out of the photo album, and exchanged it with the image we had in a frame that we were using as part of our display. I then took ‘our’ photograph and placed it among all the other babies and childrens memorials that each parent so carefully and proudly had displayed. Seeing all of the childrens names largly displayed on the screen, one by one was so emotionally overwhelming. Then we all lit a candle in the 'memory' of our children. We all had the opportunity to get up, and as we lit our candle, say who we were lightening it for. We were all bonded together in that room. Bonded by the deaths of our children.

My point to this is: I attended a conference for bereaved parents. I didn’t think of myself as going as a bereaved parent. I went as a person who thought I could take away a bereaved parents heartache and grief. I can’t do that. None of us can. I will always be a mommy to a dead baby. My title will never change. Some people will look at me and instantly know this title, some will not. I now understand and accept this. But, how life sure has changed. I now have wonderful friends, that also carry the same title...Mommy to a dead baby. I have lost, what I thought were wonderful friends, that don't share this title. People that I thought would be friends forever. When you have the title of 'Mommy to a dead baby' people tend to shy away from you. The best way to describe this is like having an incureable, 'deadly' disease. And if they get too close, they can catch this disease. And they don't want to catch what we have. And it is so much easier to forget about our dead babies, than it is to remember them. I think I have pushed aside so much of my personal pain and heartache. So much so, that I felt distanced from the parents that I spoke with. Sure, I remember my pain. Pain so deep. A wound so open and raw. A pain that I thought only death (my death)could take away. Yes, I remember my heartache. Feeling like my heart had literally been torn from my chest. Shredded into pieces. Thrown violently on the ground. Stomped on. And then just left there lying. Lying all alone. Left for my empty, aching arms to somehow find the strength and the courage to find all the pieces and pick them up. But you know what? I can't find one piece. ONE LITTLE MISSING PIECE. No matter how hard I look, no matter how long I search, there will always be just that one little piece missing. And because of that one little missing piece, my heart will never be whole again. That little piece has a name. Maddux. All our our little missing pieces have names.

I am sitting here, writing this, completely and totally exhausted. Physically and Mentally. I had a beautiful break down on the plane coming home on Sunday. Sitting in my seat, hugging my Pooh bear, tears streaming down my face. Nobody asked me if I was ok. Alot of people saw me crying. They just looked the other way. I am sure, nobody knew my title 'Mommy of a dead baby' on that plane. It is just amazing how people deal with grief in our society. Much easier to stay away, than to get involved. So soon after Maddux's death, people asked me how I was doing? I said ok. Then on the outside, it looked like I was really doing ok. I am finding it really hard to go back in my grief. You all have heard that saying ' One step forward, two steps back.'I was pushing so many steps forward on the outside, not really realizing that inside, I was falling behind. And now, those around me, don't understand my behavior. They thought I was 'over' Maddux. Those around us will never know our heartache. Only those around us that have lost children. And even then, I know my personal pain, grief and heartache. I know the depths of it. I know the feeling of not being able to breathe, but to imagine another parents pain and heartache is simply unimaginable!I have never personally attended any bereaved parents group. Nor have I wanted to. I missed out on alot. I already have plans to attend a bereaved parents support group. It is so important to find any type of parent support in your area. It is important to find others that share with you, similiar heartache.

Here with NILMDTS we are trying to build that network. And we are off to a wonderful start. It is also important for me to write about the photographs I have of my son. These are the beautiful memories I have left of Maddux. The time we shared together. Capturing these memories in photographs are so important to a parent. As a parent of a child, living or dead, what is the one thing you share with others when you talk about your child, and they are not physically with you at the time? It is a photograph."

So, I must say thank you to Dr. Joanne Cacciatore. She is the founder of the MISS Foundation. She is truly an inspiration. Thank you Joanne...

1 comment:

Dr. Joanne Cacciatore said...

Gosh, thank you so much, Cheryl. It was great to see you again. You are a treasure!