I want to send some praises for blessings that God has sent our way. First is Macki Penick, her heart has touched our entire family. She was led by God and listened to the call. In doing so, she has blessed our family tremendously. It goes far beyond monetary things; when someone does something for our family, we are humbled beyond your imagination. I have never been a person to accept things from others; I have usually been the one to supply their needs. God is teaching me lessons in accepting help and support as well. As crazy as it sounds, it is really hard for me; it touches my heart so deeply that it hurts because I am so grateful for everything. I am very behind on my thank you notes, which is very unlike me. I want to apologize and want everyone to know that with every note I write tears flow, so I have been putting it off because it is very emotional for me.The Batten conference was an overall good experience. I did not learn anything new and realized that I actually knew more than most presenters. All they knew was research, which was old data. The parents are the experts on this disease, and it was with them that we shared and learned the most. However, with this disease being a progressive brain disease, it unfortunately affects every child in a different way and affects different parts of the brain at different times. So what works for one, may not work for another - extremely frustrating! I thought maybe some parents would have this magic formula on how to live joyfully and in the present every day, but everyone was struggling just as we are. I realized that we are doing really well for the cards that we were dealt.
We got Addie genetically tested at the conference and should get the results within a month or so to see if she is a carrier. If she is, then before she has children her husband will need to get tested as well. She said she didn’t want to know and would just adopt children, but we surpassed that hurdle. The Sibs program was the best thing about the conference! It was done by adults who had a sibling who had passed from Batten Disease. They wanted to give back and have worked with this program for years - such a blessing. If we go back to the conference next year, it will be because of this program, and to think I was worried about Addie. It took some time, but they knew exactly how to get her involved. She wouldn’t open up but maybe next year she will feel more comfortable. It was a great experience but an emotional one that has taken a toll on all of us. We are drained for sure, but life goes on. School is starting and we are getting things ready for that. William will be going to a new school and starting kindergarten in an inclusion classroom, and Addie will be in the fifth grade, our last year before Middle School. Both will be at the same school, and we’re looking forward to a good year.
Thank you for keeping up with us on William’s Journey!