Checking in!

Thought I would check in! Hard to believe the summer is nearly over! Last week Monday we celebrated Nick’s 12th and Joshua’s 2nd birthdays! It is scary how Joshua looks just like Nick did but boy do they have different personalities! Such a big difference between the 1st child and the 4th child! I told the pediatrician that Joshua was taking certain qualities from the other 3 and morphing them into one! He certainly keeps us on our toes! He laughs a lot but gets into trouble a lot too! Nick is starting 7th grade next week. I am not sure how I can adjust to saying I have a Jr. high student. He is ready to go back….to an extent. At least his cast is off from his broken wrist and soccer practice has begun.

This past Saturday, my Mom’s sister, Marilyn passed away. My heart aches for the pain my Mother is in.  I am so thankful she and her two brothers had the chance to see her one last time last week. Today was her funeral and I was faced with having more to talk about with Jacob and Sophia….the word “death”. Hard for them to comprehend at their age and yet I could see a somber look on their faces. Jacob even tried to wipe the tears away from my mom’s face. That leads me to think even more. Does he know more than I think he does? Overall, I don’t think he really does know what is to come. I had a chance to see and talk to many of my cousins today. My aunt raised 7 children, most of whom I had not seen in countless years. Hearing how old some of their kids are made me feel so old (thinking old as I turn 39 this Sunday)! I also had the opportunity to share a bit more about Jacob. What they heard was that he is a child with a rare disease with no cure….terminal. What they saw was a different story and one I prefer to look at. They saw a little boy LIVING. He was just a kid. One smiling, laughing and playing with his cousins. When I think about what the Dr.’s had said over two years ago and what I see now are so different. Over two years ago, we were told Jacob would soon become blind and lose his ability to walk. That “soon” came and went. How or why? Only God knows the purpose. Perhaps God has made him a child so willing to endure all that he has to help others. Jacob has embraced the surgeries and testing in a way I can’t even begin to imagine. He is one tough kid who can smile all through having blood drawn despite the tech having a hard time finding the vein. I have said before how I loved a quote from another Batten parent that their child was not dying from this disease but living with it. I admit there are days when that is hard to believe but that is so true in the overall picture. Although tests have proven to show changes that would be against him, he somehow manages to show us something new…in a good way. He is still a “can do” child even though he can easily call it quits. Jacob, Sophia and Joshua were working on puzzles today. Sophia whips through 63 piece puzzles with ease and Jacob sees that. He was struggling with what would be a simple puzzle that had less than a dozen pieces. He said he could not do it but I knew he could! He just needed more time and encouragement but I could see his frustration. He did finish and without me touching it! It is sad to see him struggle like that and at the same time, it’s a happy feeling to see him smile because he did do it!

My sweet Jacob. How I wish you did not have to be like this and that you could live being a typical kid. That is not to be. You have a special purpose. This is who you are. This is who God made you to be and it is a gift. I got to share you with others today and they could see just how special you are! I am so Blessed and honored to be your Mother. You are one amazing child and I love you so much!

It seems as though the weaning process from his seizure med is a success. We are not completely off his afternoon dose as we are only half way there but so far so good. On the other hand, his behaviors seemed to have increased. Their could be a correlation between the two. We are seeing his behavior specialist tomorrow so we will see what the plan ends up being. We may have to increase one or both of his behavior meds. We also recently saw a pediatric psychologist. We were referred by his Neuro but also had been recommended by his behavior specialist some time ago. Problem is that insurance does not cover this. We are returning to that office his week for some testing. I have a “book” of questions I have been trying to answer so far to turn in to them. Our hope is that we will be able to determine where he is at across the board. We want to know how to treat him in certain circumstances. For instance, if he is acting up a certain way, do we treat him at a 4 year old? Does he know more than we think (which I hope) or is he further behind than we think.  We are hoping this will help us take better care of him and make sure he is getting all the assistance he needs. We will not get results from the testing until later in September.

We will be heading to Jacob’s open house at school this week. We have not met his teacher yet and I look forward to doing so! Still waiting to hear from the bus on the times for pick up and drop off. Yikes! I am not ready!