Being at the beach is a relaxing experience for Brayden. He has been loving the sand on his feet. Jeremy has been working hard to keep Brayden involved in the family beach vacation, trying everything to make sure he is included and we are feeling like this is a normal vacation. We have set up a cabana for Brayden to sit, sheltered from the sun. We brought Brayden's little chair for him to sit in. The boys fill buckets and trucks with sand so that Brayden can sit in his chair and still be able to put his feet in the sand. While in the house we brought his music and fan so that he would hear the normal sounds of home and feel safe. Since he cannot see, we try find things that will involve his other senses to help him be aware of his surroundings.
Last summer we vacationed at the same beach. We were desperately trying to understand Brayden and his circumstances. We felt like everything had been turned upside down. Our normal life with three normal children, was not so normal anymore. A year later and we are still looking for normal.
A friend sent me a book to borrow, I have been reading on this vacation. The book is a father's memoir detailing his life with a son that has several brain abnormalities. I will have to talk more about this book in blogs to come. The situations are remarkably similar; from doctors, tests, therapies, emotions, questions, etc. Many of which we are experiencing. Almost every page has something that resonates with me.
Thinking about our quest to have a great normal vacation, his wording really hit it home for me and I wanted to share it. A few days before leaving for vacation, Brayden was not feeling well. I mentioned that I wanted things to start feeling normal. Do we ever find a sense of normalcy or at least a normal routine? Brayden is far from normal and likes to shake things up. Normal needs to be taken out of my vocabulary.
If you changed the name, it would perfectly fit our Brayden's situation.
Aidan's life was all about him and us letting go of expectations and desires. We had to let go, continually, of whatever image of him we held in our minds. As the typical became the impossible, we had to redefine his normal, our normal. It was now normal for us to run food into his small intestine (Brayden's is into his stomach) by either a portable pump or a large syringe. Seizures were normal; they still happened many times every day to various forms. We knew how to distinguish the onset of a major neurological explosion from the run-of-the mill seizure; it was routine for us. Not walking, not talking, not seeing-all of this was out unexceptional everyday experience. Of course, at times it could be deeply unsettling. Sorrow could easily arise if we dwelt too long on what a normal life might have been for him. With no real choice, however, we had to take normal for what it actually was. We had to let go of the ideal child.
Aidan's Way by Sam Crane