Joshua's Journeys #8 Our First Conference

COURAGE IS NOT DENIAL. But sometimes courage looks like denial to other people. (T.S. Hartshorne)

Within moments of hearing the words “CHARGE Syndrome" last July in the NICU as we stared at our beautiful baby wondering what those words would mean to us, it wasn’t long before Phil asked for a laptop and we were searching for all the information we could about CHARGE. We came to the CHARGE Syndrome Foundation website and noticed that their biannual conference would be held in Bloomingdale, IL. Was that a sign? Why else would they choose our neighboring town of all places. We looked forward to the conference time as we started our journey with Josh: his many surgeries, therapists, trach changes, g-tube mishaps, you name it. When Josh left us on March 14 we were left with the question of should we still go to the confernce? Did we belong there, since we no longer had our CHaRGEr here with us? What would others think of us? How would we handle being there emotionally?

I decided to sign us up. Phil figured if he wanted to work he would, or if there was a time where no sessions were of interest to him he would go back home and get some things done since we were so close to the resort. Friday came and we both headed in to the conference. The first person I saw heading down the hallway to the conference center I smiled and said hello, put my head down to keep walking, and then stopped and turned back around, as did she. “Oh my gosh!” we both said at the same time “Hello!” and gave each other a big hug. It was Joshua’s vision therapist. Of all of the Early Intervention therapists Michelle was my and Josh’s favorite. I could tell Josh enjoyed her company and the visual stimulation, and I felt she really taught me some things about CHARGE, about Josh, and about deaf blindness. She is an amazing person that I have not, and will never forget. After our embrace she asked about the Charge for CHARGE race that I am hosting next weekend. I thought it was amazing that she had heard about it! Throughout the whole weekend I learned that people did read my posts on the listserve, and they genuinely were excited for what I was doing.

We continued down the hall and up the stairs to the conference check in. I gave our last name, and then was greeted with, “Oh, this is Josh’s mom.” I again looked up in awe that someone knew who I was (Josh’s mom!). The welcome didn’t end there, we were soon greeted by Crystal and Eva. Eva is Josh’s first crush, although they never met. At Josh’s wake, at nothing but the most perfect moment Phil and I were blessed to see Crystal and her beautiful daughter Eva come into the room. They drove an hour to get there and it meant more than I can ever tell them. It was such a joy to meet another child with CHARGE, after all they’re a rare breed! She reminded me so much of Josh, and gave em a glimpse of what he would be like in a few years. Crystal has become a very special connection in my life, and I am so grateful that she had the heart and the love to come during our darkest of hours. They were also at Josh and Joey’s birthday party, will be coming to the run/walk, and we will be able to see them again in September for their bowling fundraiser. I know we will be seeing them more and more as months and years go on, and I am so glad that we met.

Crystal had also organized and invited me out to dinner on Friday night with a few other CHARGE moms. I had said I would go months ago when I first heard. I offered to find a good place and make reservations, although we stayed at the hotel which worked out very well. The point is, I was all gung-ho on the idea, until that night came. While I felt welcomed from the beginning (by this point many others had said hello and called me “Josh’s mom”- people that I had talked to over e-mail, people’s blogs that I’ve visited, etc.) I still felt like I shouldn’t go to dinner because Joshua is not with me any more. At our first break, some people were talking and another familiar face from a foggy day appeared. Kim. She was another mom that had come to Josh’s wake. She had twins as well, and one with CHARGE. Unfortunately she knew all too well what I was going through as she lost Kate only 2 years before. I remember asking her if it would ever get easier. What a question to throw at her! She never said yes, but was able to comfort me in a way I won’t forget. I was so thrilled to see her there, and even more excited to know that she would be going to dinner as well. I wouldn’t be the only one there that had lost a child to CHARGE.

Let me mention briefly here, that Phil did not leave that day to go home and work, to catch up on any projects/chores, or even to play video games. He was as thankful as I was to have decided to go to the conference.

Waiting for everyone to show up for dinner we were all being introduced to one another. Some of us had heard or seen each other’s names and were putting faces together, and everyone was asking how old their son/daughter was. It wasn’t the first time that day that I had to say that my son was an 8 ½ month old CHARGEr when he passed and has a surviving twin that just turned 1. In the normal world of typical babies and children you’d get a look of “open mouth insert foot” but not here. It is very hard to explain to someone not in the world of disabilities, especially CHARGE, but they were interested in hearing what happened. They were not horrified, they were genuinely concerned, and for the first time I felt there were people that truly understood my mixed emotions of life. Not once that night did I feel left out, I felt like I had as much to offer as others, and I felt like Josh was alive and with me again. Heading back to the hotel for the night time event, a couple of us were talking and sharing stories. We all had some similar situations, and realized that because of our experiences we have learned who and what matters most. Many people have been removed from our lives for various reasons, while many new friends have entered, others that may have surprised us with their support and love have reentered our lives.

During the sessions I felt the adrenaline rush come back of getting so upset at doctors and nurses and having to advocate with all of my heart for what I truly believed in and loved. I felt similar pride in hearing other people tell stories of their children as I did when I would see Josh do something that no one thought he would ever do. I felt the fear of the unknown, the guilt of wondering if I’m doing something wrong, or if I should be doing something more- for Josh and Joey for that matter. I felt like I was back to my normal life…my life where Josh and Joey consumed my everything. I felt like I was that much closer to heaven, to Josh, to a world where all seemed as it should be.

I can’t hit everything that happened at the conference, and if you are still reading you are very patient. There was just so much that it is hard not to go on and on. I am thankful for catching up with and/or meeting Crystal, Kim, Amy, Shelly and Amy and of course their adorable little ones. Friday night after dinner there was CHARGE Idol where many kids performed in a talent show like competition. It was adorable watching them sing, dance, sign, play instruments, tell jokes, you name it. Saturday night was a carnival and silent auction. We had stopped home to pick up Joey. We knew that he’d be up past his bedtime but it was important for us to allow him some time with children like his brother. We packed up a bottle, pajamas, and of course his Mickey Mouse, which was really Josh’s from the NICU that Joey had become attached to.

At the carnival and auction we were walking around when I was stopped by yet another person that took my breath away; Tim, Christian’s dad. Tim was the third person from the CHARGE community to come to Josh’s wake. He lived nearby, he came alone since his son was not doing very well at the time. I remember him hugging me, and saying “It could be anyone’s kid, any one of us.” It didn’t matter that we had never met before, we knew what he was feeling. I was so glad to see him Saturday night. I had heard his son wasn’t doing well, and was nervous to not find him there. I hope that we are able to keep in touch, and as with all of the CHARGE families, my heart and prayers are with him and his family.

As the night kept going we changed Joey into his pj’s, gave him his bottle, and let him snuggle with Mickey. Max, another CHARGE kiddo, whose mom I had met at dinner the previous night, saw Mickey and was pointing at him. We let Max play with Mickey, and he fell in love. It was like watching Josh play with Mickey all over again. We explained to Amy the story behind Mickey, how he was given to Josh as his graduation gift from the NICU from one of his favorite nurses. We later had put a bunch of Josh’s toys on the floor to see which Joey liked best, and it was Mickey. So Joey has slept with Mickey nearly every night and nap since. It brought a smile to our faces to see Max playing with Mickey the same way that Josh would. You could tell he didn’t want to give him back, but reluctantly did.

That night I went home and while Phil put Joey to bed I walked into Josh’s room for the bigger Mickey. Josh had gotten another Mickey at the NICU. He did play with it, not as much as the one from Bethany, but it was still Mickey so it got some attention! I grabbed it from his room and looked around at all of his things: leftover supplies, toys, clothes…we really need to get in there one day, but that is a post for another day.

Phil came downstairs shortly after and we looked at Joey on the monitor. Joey usually falls asleep fairly quickly, or rolls onto his side of tummy. That night he laid on his back and was blinking brightly towards the monitor. Phil and I both laughed reminiscing about Josh, he never wanted to sleep but we would put him in his crib to try and keep him on a schedule and let him know it was bed time, but he’d just lay there blinking. Joey resembled Josh so much that night, and we couldn’t help but think it was a twin thing. Joey knew he was at a special place surrounded by special people that night, and he was laying there peacefully as if he were reliving some memories of Josh as well.

This morning was the final morning of the conference. I had be hoping the time would not come. I had sleepless nights every night of the confence, from excitement, to thinking about Josh, and wondering what the next day would hold. We walked in to the conference with Mickey in a bag for Max. There is no one we would’ve rather had Josh’s other Mickey than Max. He brought back some memories that bring tears to our eyes. He took to the bigger Mickey just as well as the one the night before, and once again I found myself smiling, crying, and hoping the moment wouldn’t end. He is a precious guy that reminds me a lot of Josh as well.

The conference continued and all I could think of was how I felt the last day of our honeymoon. To digress I will insert another quick (I know this whole post is very long!) story: the last day of our honeymoon we were packing up the room and getting ready to head to the airport. Phil turned to me and asked if I was ready. Tears streamed down my face uncontrollably. I did not want that time to end. I did not want to go back to the real world. I wanted to stay there with Phil forever.

I felt the same way the last day of the conference. As each person took the podium to speak a lump in my throat kept growing, at one point I even turned to Phil to tell him I felt like it was the end of our honeymoon. He laughed, and he knew the same feeling.

After the last speaker one more person came up to me. She asked if I was the one that had twins, I hesitated for a moment, and then she added that she heard I lost the one with CHARGE. I told her that I was she. After looking at her name I remembered it from the listserve. She proceeded to tell me that she too had twins, however one passed on in utero, and the other was born with CHARGE. She knows the feeling of losing a twin, which is a unique loss in itself, and then she proceeded to say through tears and a hug that she knows that she has her miracle baby, and I have mine. We are both thankful for the surviving twins we have, but will never, ever forget the one that left too soon.

There are so, so many more stories I could share and each one touches my heart as much as the next. I know I’ve gone on long enough and am wondering if anyone is still reading! Through the weekend I learned that by having Josh and being apart of the CHARGE community we will always be a part of this family. It truly is a family, only in some weird way less dysfunctional. I am so thankful for the friends I’ve lost, and grateful for those I’ve kept, as well as those I’ve gained that are in my life now.

We will be there in 2011!




I wish I had more pictures! I will have to look at Eva's blog!