DanielleKessner

This is a little (i.e. a lot!) long so settle in…..

I found CHERUBS in 1999. I had just joined the computer age and got connected to the Internet for the first time. I decided to see what I could find on Diaphragmatic Hernias. It had been almost 7 years since my first baby Alyssa had died from CDH so I was positive there would have been huge advances - maybe they now knew what caused it! How wrong could I be!!! But......

I found CHERUBS and that changed my life in such an amazing way. I can still remember sitting in front of that computer every spare moment I had over those first few days. I read and read and read. I cried, I laughed. I really can’t express what a profound impact it had on me. For 7 years I had been alone with this horrible thing called CDH. For 7 years I had been alone with my grief (small town - no support groups in the area when Alyssa died). And now I was able to talk to other parents who got it - they had been through what I had and I swear their words were at times stolen from inside my head!!!

I left a message in the guest book and contacted an Australian lady who had also left a message there. Sue, Henry’s mum  Sue was the first CDH mum I ever spoke to and even though we haven’t kept in touch very much over these past few years she is one of those special people in life.

Next contact came from the legendary Judi, Christopher’s mum. She encouraged me to join up and talk to other families. We exchanged many long emails back in those days. I know she spent just as much time emailing lots of other members – she really did so much for so many of us. Like Sue, Judi and I haven’t really stayed in touch. Like Sue, she is still very special to me and I will always be so grateful for the support and friendship she gave me.

There were a number of other members in those early days that I chatted with and have fond memories of. A few I have reconnected with since Dawn has started this new site. It is always so wonderful to read their posts, see how they are doing and catch up for a quick chat. They all helped me finally deal with my grief – a long way down the track but better late than never!

(I must say here that there are a couple of reasons why I lost touch with some of my close cherubs friends. Number one, life moves on. It is hard to spend so much time talking about our grief that inevitably there comes a time when enough is enough and we head down another track. We don’t get over it. We never forget. But we do move in another direction. Number two, I became so involved with CHERUBS Australia (read on!) that I really didn’t have time to do the one on one stuff that I originally did. Sad but something had to give)

And then there is Dawn 

One of the most special people ever placed on this earth. She is so amazing. I thought so then and my respect and admiration for her has grown 10 fold over the years. She gave me my life back. It’s as simple as that. Oh, I was living, had gone on to have two healthy children and doing quite well. But CHERUBS…it helped me become me again. And Dawn is CHERUBS. She created CHERUBS, she has carried CHERUBS and she has done so much of the work on her own. And she will always be my friend 

Dawn called for her first lot of State and Country Representatives not that long after I became involved. I was interested but a little scared and not sure I would be any good. Dawn convinced me to give it a go (she is very good at that, lol). I decided that if I could help even just one family not be so alone with this then I would have achieved something special. That was my goal.

So I got my little list. There were eleven Australian families listed. Only eleven! I emailed or wrote to each of those 11 members and introduced myself. I think I got a response from all but one. A few were quite keen to talk and I was able to put a few members in touch with each other given that they had similar circumstances. By this stage my husband Julian was in the Army and we were living in sunny Queensland. One of the members also lived in Brisbane. Joanne, Ariana’s mum. Ariana had survived but Jo’s next baby, Minya, was stillborn. So she understood my grief. We chatted on the phone. We went to visit each other. We became friends. To this day Jo and I stay in touch. We see each other at least once a year (I am back in Victoria) when we meet up and share a motel room at our CHERUBS Australia Annual Forum (talking and laughing the night away). We have often discussed how long this can go on – will we be little old ladies sitting at the forum telling the young ‘uns what it was like back in our day, lol. Jo – another one of my very special cherubs’ friends 

So things were going well being the Australian Representative for CHERUBS. I could talk to the grieving members because I was one. I could talk to the surviving families because I was always so happy to hear about a cherub who had made it. Then the heart stopping email arrived. Dawn wanted me to contact an Australian lady who was expecting a cherub – she was diagnosed at 14 weeks of pregnancy. I was frozen with fear. What would I say? I didn’t find out about Alyssa’s CDH until after she was born so I had no idea what this poor lady was going through. How would she respond to being contacted by someone whose baby had died? So I ‘sucked it in’ and sent an email to her. Judy . I held my breath waiting to hear back. I was so relieved at her response. She told me that hearing from me was like being thrown a life jacket. Jo and I got to meet with Judy while she was pregnant with Harlee. Jo helped me through the whole experience as she had know about Ariana’s while she was pregnant.

Not long after I had contact with another pregnant mother, Caitlin mum of Rhian. I felt more confident about this side of things now – thanks to Judy and her acceptance of me, even though my situation wasn’t the most positive! Caitlin went from an expectant mum into a grieving mum. It broke my heart that gorgeous little Rhian couldn’t stay - just like it does every time one of our member’s loses their cherub.

Two months later Harlee was born. What a roller coaster that was. I was still so upset about Rhian that I just couldn’t face Harlee not making it. He survived. I was over the moon. Harlee was the first surviving cherub I got to hold – some time later when he was almost a year old. It would be fair to expect that I had mixed emotions holding this little boy who survived when my little girl didn’t. I can honestly say though there were no mixed emotions. I was just so happy to hold this little man! So happy that CDH wasn’t all bad. Judy – another one of those special people 

A couple of weeks (or less) after Harlee was born, devastating news came through on the listserv. Dawn’s little boy Shane had passed away. I was stunned. I still can’t believe it. Shane lived over the other side of the world. I never met him. But I knew him. We all did. His mommy had done such a remarkable job of sharing her precious little boy with us via email that it was like he was our little buddy. He inspired his mum to help so many of us from around the world. He will NEVER be forgotten. He will ALWAYS be so very special.

My aim was to be able to help at least one family not be so alone with this. I achieved that goal. So then I had to create new goals…I created a website, I started a newsletter, we held our first Australian Get Together. We became CHERUBS Australia. Our group continued to grow. My list of special cherubs’ people continued to grow. There are so many on that list now. I would love to name them all but am worried I would leave someone out. They know who they are – or at least I hope they do! And each and every one of our little Aussie cherubs holds a special place in my heart – not to mention so many other cherubs from around the world.

So here we are. September 2007. CHERUBS Australia is currently in the process of applying for official non-profit status. We have a solicitors firm representing us pro-bona thanks to Linda, mum of Emma. I have a number of wonderful members who help me with the running of our group and with the decision making in relation to becoming official.

I have achieved my initial goal a number of times over. I have achieved a lot of my other goals. I am proud of what we have achieved and I look forward to making an even bigger difference in the lives of families in Australia affected by CDH. I do it all for Alyssa – I get a huge amount out of it as well but it really is for Alyssa. As selfish as it is, I would swap it all in a second if I could have my beautiful little girl back. But I can’t. So this is what I do. Making something positive out of the worst thing that has ever happened to me.

A friend (non-cherubs) asked me recently if my volunteer work had a ‘use by date’ on it. Would there come a time when I said that’s it – no more? I couldn’t give a definite answer. I guess there will be a time when I step down and let someone else take the reins (believe me; I have tried to hand them over a couple of times already, lol). But I can’t imagine walking away from CHERUBS completely. I would never walk away from Tara or Ethan completely. They will become adults and will start to live their own lives. I will have less and less to do for them. Maybe the same will happen with CHERUBS – I could never walk away completely because Alyssa is so tied in with it.

Things are looking very exciting for CHERUBS Australia at the moment so I can’t back off now. I hope all of our Australian members can join me on the ride and do whatever they can to help our group and families from around our country affected by CDH.

The work I have done over the past 8 years has given me an insight into what Dawn has done and continues to do. It blows my mind to think of all the work she does. The time. The effort. The commitment. CHERUBS currently have over 1800 members. Dawn does the bulk of the work. CHERUBS Australia has maybe 100 members. Comparatively I do so little and at times I find it draining and want to walk away. She is simply the best 