Happy New Year!

It was a long 2009! Looking back over the year we see many ups and downs. In the big picture, the year proved to be very good for Jacob. We passed the one year mark of his diagnosis and with that, Jacob still remains to be above where he would be expected. He did have some progression. Not just stuff that we saw but tests showed changes as well. I think our biggest challenge has been his behavior. At times things have made me more emotional and I just broke down. It’s one thing knowing your child has a terminal illness but another thing is seeing how that affects your child. Watching him struggle and raise his frustrations is hard. It takes a toll on all of us. Our other kids have to live with this lifestyle and I have to say I am pretty proud at how they handle things sometimes. Other times, it wears on them too. We tried harder to make more time for the other kids and we will continue to do so this year. I think that makes a big difference with them.

The year gave us the opportunity to bring more awareness. We were able to get ourselves on the radio, in the newspaper (front page!) and on TV a few times. Doing that was not easy since I am not a public speaker and usually keep this stuff to myself. I had to set that aside and take the risk because I knew it could have the chance to help Jacob. We had a $2,000 check donated from an organization in Jacob’s name for research! We were amazed at the public response and overall, felt we were pretty successful in letting others know about Batten Disease. August came around and we had our first Jacob’s Prayer fundraiser! Our friend, Floriza, put a lof of work in and that too was a big success! We have had so many asking about another one so we have already been working on setting a date for a second!

We were so happy when the Bishop granted permission for Jacob to be Confirmed and receive his First Communion. It was a Blessed time and something we love seeing him take part in each and every time we attend Mass. Although he is not fully aware of everything, there is something there that he does seem to “get”. I can’t explain it but it is beautiful to see. God is so good!

In July, Jacob’s Birthmother came here to MI for a visit. It was her first visit here and it was a wonderful time. We were happy to share that time with Jacob with her. We are so Blessed that she chose us to be his parents and can never thank her enough! Another visit may be in the future! Just after she left, we headed to St. Louis for our first experience at the Batten Disease conference. It was a very emotional time to say the least but we are so glad we went. We got to meet so many wonderful families and lots of amazing kids! Although we knew what this disease does to children, that trip really opened our eyes and made it more reality. It did bring comfort knowing we have this “Batten family” to be with us on our journey. We are already planning on attending the next one in July!

Jacob started 1st grade and all day school! We were not sure how he was going to do but I think he is adjusting pretty well. We have had days where he said school was fun and if you knew Jacob, he never used to say that! I hope he continues to enjoy being at school! I miss him a lot but there are certainly days where I am glad he is there!

Jacob turned 7 in Nov.  We are so thankful we have this time with him. We are trying hard to give him as many experiences we can since we don’t know when more changes will happen. Jacob is full of wishes and dreams. It’s tough knowing what is to come but when we take the time to do some of the things we have, it takes us to a different place where we can sit back and enjoy the time with Nick, Jacob, Sophia and Joshua. We will not take life for granted. It is too precious. We will continue to plan as much as we can.

This disease is brutal. It has taken the life of so many children and several in the last few months. A couple days ago, the little girl Allie that I had mentioned finally went to sleep and earned her wings. Only 12 years old! I followed her carepage and talked to her mom. She was physically suffering in unimaginable ways. How does one watch their child go through that? How do you pray that God will let your child be at peace knowing that means your child must die? I know our goal as parents is to have our children go to heaven but this way seems so unfair. I don’t like to use the word hate but I HATE this disease! I HATE knowing there is no cure! I HATE seeing my child slip away!

We still have a child who remains having unspecified Batten Disease. We went through all the testing and it still left us without an answer. We are working on what our next step is going to be. We continue to talk to researchers. We pray that 2010 will be the year that we not only find out what form Jacob has but find a cure! We can’t do this alone. We need to continue to bring awareness about Batten Disease. You can help us by letting others know about this! You can help by passing along Jacob’s website we are using to bring that awareness www.jacobsprayer.org We can’t give up on HOPE!
Thank you so much for all your support and prayers over the last year. We can’t imagine doing this without all of you! We are grateful to have so many wonderful caring people in our lives! Jacob is one very special boy! By the way, Jacob loves seeing messages left on the guestbook! If you get a chance drop him a quick note from time to time!

Wishing you all a Blessed 2010!

Chris