School

We are doing fine; we have bad days but mostly good.  William’s seizures are getting under control with the increase in Onfi.  He is a happy child.  He knows he is loved as he feels it around everyone he knows.

We are going through a transition concerning school.  In August, William will be transferring to the special education class at Hill Farm Elementary, the same school Addie attends.  I am excited but nervous at the same time.  I will love having both kids in the same place and will actually have time to help more at the school.  We LOVE everyone at Access, William’s current school, and I cry every time I think about this transition.  I can take William to Access and know that Chelsea, Leslie and Stephanie, along with his therapists, love him; and that means everything to me.  They care for him on a level that is far more than just a student in a classroom, and that is what I want for William. I don’t have high aspirations of his learning the alphabet or numbers; all I want is for him to feel loved and wanted.
 
Addie gave me chills when I asked her about her feelings on the subject.   I know kids can be mean and wanted her to be honest with me about how she would feel about her brother going to the same school. She said, “I am excited.   Mom, I am proud of William.” It took everything in me not to cry, but I responded with, “I am proud of both of you!”

I know change can be difficult, but not all change is bad.  Everyone has an opinion on this matter, but it is a decision that we made prayerfully.  Circumstances may change and this option may not be available a little later, but for now,  William loves being around other children and that stimulates his senses in ways I could not do at home.  I have faith in the Hill Farm staff, because if I didn’t, William wouldn’t be going.  That’s for sure.  But with that being said, it is always a leap of faith to put your child in someone else’s care, especially a non-verbal child who is going blind in addition to other health issues.    It would be easy for me to keep him at home, but if I listen to my heart and do what I think is in William’s best interest not mine, school is where he needs to be.  

So, I ask for you to be in prayer for me.  William will be fine, and I have no doubt that he will capture the heart of everyone he meets.  It’s just hard for me to let go and trust another set of individuals with my son.

I have been putting off writing this blog until I could gather my thoughts.

William has been maintaining this past week which is amazing. We went a full week to school, which is great because it has been quite some time since we were able to go all week without sickness or doctor appointments. We have had a few non-stable weeks, and we are still struggling with seizures and playing with medications.

With this disease, your child can wake up without a skill that they had the day before. It is because of waste build up in the brain cells. That is why I cherish all of William’s smiles. Some children lose the ability to smile while others keep it until the end. Every day and every smile are cherished!

It also makes managing medicines and seizures extremely hard because, with this progressive disease, different areas of the brain are constantly being affected.  Medicine that worked last week will not be as effective now because the brain chemistry has changed. There is no rest in this area. William’s brain is constantly changing, and mine is always working trying to figure out what is going on, why this isn’t working, what changes we could make, and so on.  I am very grateful for my mom who is my sounding board, listening to me go over every scenario sometimes multiple times, knowing she has no clue what I am talking about but is just there to listen.

This might be a controversial topic, but I have had trouble lately understanding why God would want William to suffer so much.  I didn’t think I was angry with God, but I was, and in turn, I distanced myself from him. These were very hard weeks for me; without Him, darkness entered, and honestly, it was hard to function. It was when I reached my lowest that I cried out, “Why would you want this?” I felt his presence answer me, “Braley, I am hurting just as much as you are.  I didn’t want this to happen.  I have lost a son as well and weep for you. I am here to comfort you, please come to me.” This has helped me tremendously. There is darkness and suffering in this world, but we have a loving God that cares for us.

It warms my soul to know that others are reaching out and are concerned about our family. You will never know how much it means to someone until you are in a similar situation. God uses people to show us He cares; for that I am sure.

God bless,

Braley