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!
