Things are fine, things are routine. I watch two of my boys grow and develop at a lightening fast pace. The two year old is remarkable. I think to myself, are all two year-olds this amazing? Or am I just paying more attention? My six year old is growing into his own person. Full of joy and compassion, frustration and determination. Are all six year-olds like this? Or am I just paying more attention?
I watch Dermot stay the same each day. Days filled with stretching, meds, equipment, lifting, drooling, and all the other minor irritants that eat at my sense of well being each day. I'm angry that these things don't allow me the patience for the everyday occurrences of life. Everything seems amplified and dampened all at once. Things that used to matter so much don't and things that shouldn't matter do.
We took a trip down to Mayo Clinic a few weeks ago. We had a few tests done (EEG, Blood draw), saw a few doctors (metabolic/geneticist, a neurologist/epilepsy specialist) We answer all of their questions about Dermot. "Was your pregnancy normal?" When was his first seizure?" "What drugs has he been on?" "Can he roll over, sit up, crawl?" "Is he developing new skills?"
Sometimes I drive alone in my car with the music way too loud and I am overcome by grief. Sometimes I'm out running and begin to cry spontaneously. Sometimes I watch my other boys hug each other goodnight and get teary eyed. Sometimes it just too much to bear. Sometimes.
There's no way to describe the feeling of watching your son grow, but not develop. Wishing he'd stop growing so I'll always be able to hold and carry him. Knowing that the day will come soon when I will not be able to lift and carry him. Helpless. Preparing for the next stage of Dermot's life is beyond difficult. Each day I try to move towards it. I leave him in his chair longer than I want to because he's too heavy to lift and my back is already telling me enough. I order the wheelchair from the medical supply company. I consider ripping the carpet out of the hallway so his chair rolls smoothly to his room.
I have to catch my breath before the silent panic inside me takes over. I have believe that Dermot is making me a better person for everyone in my life. "Adversity introduces man to himself" a poet once wrote. I do believe that. I try not to judge, I try not to gossip, I help others whenever I am needed. I forgive myself for not being perfect and I allow myself to feel my feelings. Most of the time, I don't question it.