It is a dark day today and I don't know why.........

Today is shit just shit. I don't know why but today is dark and I wish it wasn't. there is no big reason for today to be dark. Deni and I are exhausted from yesterdays app. but why do I feel so dark on the inside??
I feel like cranio is taking over my life just this week we have 4 app's this week two last week and more next week and it just keeps going. Is this never going to end???We wait for letters in the mail for new appointments, we wait for phone calls, we wait for headaches, we wait for questions to be asked that we can't answer, we wait for answers to be given knowing they won't ever really come, we wait for deep sleep, we wait for a normal day with cranio hanging over our heads we wait and we wait but try not to let it take over our lives but we are always waiting for something. It is a heavy burden to carry and I am exhausted. We are lucky we only live an hour and a bit from the hospital but it feels like going to mars where they speak a different language and you can't quiet understand it and what they are saying, it's a different planet. They poke and prod your baby and you sit holding their hand saying it's ok it will be ok, but will it????
They say yep there is something abnormal at the back of his eyes but we don't know what it is? It's not effecting his vision, but it's abnormal and we can't figure it out. Go home don't worry but come back in three weeks for another day of never ending tests to wait and see if they have changed and see if we have an answer.
I will wait because I have no choice but what do you do why waiting?
We have more appointments this week I don't know if I can do it, put on clothes go holding my sons hand while they talk about every thing that's wrong and what we need to do or not do. No one knows the answers yet and that's so frustrating, I wonder if they ever will know all the answers.
I  am losing the energy to function cranio is taking over my life and even my dreams. But there is joy. My son is alive and there is some solutions to his medical problems and we have a good life.
I feel very alone in this, normally when some thing happens I find a support group and I meet with them and we sit and talk and we are safe with our feeling and emotions and we are supported. With this cranio I feel isolated and distant.  I want my house to run smoothly but it feels stuck stuck in chaos. Tomorrow will be better, it has to be.