Adam's Camp

Camp began on Monday evening with a dinner and gathering. We were so lucky to be able to spend the week with two other families that we have been in touch with now since about 6 months after we got Livi's diagnosis (probably summer 2007?). When we received the diagnosis, I went through a period of time that I was overwhelmed and just couldn't grasp all of the information and what it meant. I spent some time researching, but although I had the name of a support group to contact in the UK and a lovely letter from another family reaching out to others, I wasn't ready to begin that path yet. I am so grateful to that I finally did though and only wish I would have done it sooner. First I wrote to the family in TX who had sent letters out to many geneticist's offices. Then, I joined a support group called UNIQUE and found a family in UT. What a wonderful support that these two families have been. The group has continued to grow and now is becoming more and more organized. We are in touch with approximately 40-50 families across the world.

So, you can see why our week was very special--not only did Livi get the opportunity for some intensive therapy but probably more importantly, we all got the chance to be surrounded by people who know exactly what we are experiencing and feeling and can relate. Jocelyn went to a sibling group and made a great friend from California who she is now pen pals with. The girls parents stopped me on our last day and spoke to me about how grateful they were that their daughter had the chance to connect with someone her age who also had a sibling requiring a bit extra attention. She had never gotten to meet another person like that. From what I overheard from other moms (and after asking Josie directly about it), they had the opportunity to talk about what they liked about their siblings and what was frustrating. Josie had a lot of questions for me after the camp about Olivia's diagnosis and what exactly it meant for Olivia. It was good to be able to discuss this at a time when Josie was ready to hear it and not just as an explanation for why 'life is not always fair'.

Some highlights of the week:

The cabin was 2 bedrooms with a full kitchen. It reminded me of Rockaway Beach a bit except that these had no TV. The girls thought it was fantastic, however, and wanted to buy the cabin and move to Colorado. Bunk beds were a highlight.


We had a campfire one evening and there were SMORES, singing and playing. The girls had a good time and we got some goofy pictures out of the deal!

We made it to two trails while we were there. Jason and I spent the morning with one of the families making walking sticks for the girls while they were at camp. It took about an hour to sand them and get them smooth and then it took some time in the afternoon to burn their names onto them and put a couple of coats of polyurethane on for protection. The girls had a good time using them!