Time for a Change

Lately I have found myself down in the dumps. Could be that I am still trying to juggle working 40 hours a week and maintain a clean, healthy, home. It could be that one of my childhood friend’s sister is lying in the ICU after a horrific motorcycle accident. It could be that a special needs little boy, that I didn’t know but was a classmate of one of Tyler’s friends passed away after suffering a seizure. It could be that I find myself missing my Grammy and Tony’s grandparents. It could be that many of my friends are having their second babies and I know if I could have more, we would be too. It could also be that Tyler’s seizures still are not under control. Our lives are based on how Tyler is each day. Planning a trip now involves making sure we know where the closest hospital is and making sure we have enough medication with us before taking off. I feel so confined because of these horrendous events that have entered our lives. We have to plan hour to hour instead of day to day or week to week.

But these feelings needs to change. Yes I am allowed to still miss people that have passed away. Yes I can still feel concerned for those who are sick. Yes we still will need to make sure we know where the hospital is and have our medication but why should that stop us? There are millions of people out there that suffer from seizures. Some of these people work, some of these people even drive. They are not confined to the walls of their house. They live their lives to the fullest. And isn’t that how we are supposed to live? I mean Tyler wouldn’t be doing half of the things that he isn’t if we didn’t make the most out of each and every day for him. We can’t stop doing that now. He will regress if we do.

Before Tyler was born, I would say I was a faithful Catholic. I went to church weekly and said daily prayers. When Tyler was born, I did say my daily prayers, as we needed him to get through everything but I found myself having a lot of resentment. And each time I wanted to start opening up and thinking about going back to church, something painful would happen again and I found myself angry. Loosing 4 grandparents in one year, Tyler developing behavioral issues, Tyler having intestinal virus’, Tyler developing seizures. It was all too much and it was easier to be angry at HIM as I knew he had my cards in his hand.

But today, when I woke up, something came over me. Something inside of me said that I need to start believing again. For the last 6 years, I have heard from numerous people that God only gives us what we can handle. And every time I heard that, I cringed. I have always thought I was tough but what we were given has always felt like too much. I have felt suffocated and confused as it felt like too much for 2 people to handle never mind one person. But today, as I watched Tyler sit in his chair and play ball with me something finally clicked. I need to start believing and letting God guide me through each and every day. I need to trust that there really is a plan and it isn’t up to me to figure it out. Some would say I am a bit of a control freak and I now realize that part of my trouble has been that I can’t control things with Tyler and that leaves me feeling lost. I don’t like not being able to plan things and fix things and do things the way they should be done. I have finally come to accept this and I feel like a huge weight has just been lifted.

I am sure there will be days that I feel overwhelmed. I think that is natural being the parent of a special needs child. But I can no longer let my internal issues run my life. Tyler is going to be 7. He is going to be going to school full day in the fall. My baby is growing up so quickly and I need to enjoy every possible second. I need to capture more things on video and in pictures. I need to write more accomplishments down. I need to relish in the miracles that he has already accomplished and those that he still will. I have been given a miracle and that needs to be celebrated! I know 6 years ago I never imagined we would be doing this…..