Sadness

This stage of grief is the hardest one to deal with.

The depression and self pity can overtake you. The feelings of "woe is me"

Why me? What did I do to deserve this? Didn't I live a good life? Didn't I do good things?

When Dylan was born, and I first entered the cycle of grief, this one lasted far longer than the rest. This stage probably lasted for months if not more than a year.

This stage puts some terrible thoughts in your mind. Horrible thoughts of suicide cross your mind. "My life is now so horrible, why should I continue?" Thankfully, these thoughts are dismissed within seconds. Still, the fact that thinking about suicide even for a second shocks me as a person who never even offhandedly considered it.

The sadness reveals itself in feelings of numbness, almost like you are in shock. I felt like I was just going through the motions of life and not actually living it. I didn't want to do anything or talk to anyone. I just wanted to be left alone. I would sit in front of the TV without actually paying attention to what was on it. They were just meaningless flickering images in front of me. I stopped making any plans for the future. I just lived day to day with barely a thought as to what would be coming the next day let alone the next weeek, month, or year.

This is also the stage that repeats most often. Sometimes it goes away for weeks at a time, but then suddenly it comes back to you. The good thing for my sanity is that the sadness now only lasts for a few minutes to at most a few hours. However, anything can set it off, and you never expect it.

We have friends who have a wonderful beautiful daughter who is just a few weeks older than Dylan. I hadn't seen their daughter in a while and then saw her again when Dylan was about 18 months old. She was running around and laughing and feeding herself and hugging her mom and dad. It did not hit me until I remembered that she was nearly the same age as Dylan. When I came home from their house I cried and and was in depressive funk for nearly a day.

After a while you tend to forget what you don't have with a disabled child. Seeing a child Dylan's age just being normal, brought back all that loss and grief. I was mourning for that child that I imagined having. I was mourning for the child that I did not have. I was mourning the child that Dylan could have been. The child who would run to me and give me a big hug. The child who would give me a goodnight kiss. The child who would say "I love you".

Since that incident, I have thankfully seen my friends daughter on plenty of occasions without the same spiral into depression.

Other events have thrown me into depressions though.

The day that I realized Ava, my youngest daughter, had surpassed Dylan in every physical, emotional, and cognitive facet made me incredibly sad. My daughter was now walking, talking, hugging, and feeding herself. I was so proud of Ava for her accomplishments and I love her so much, but I was at the same time so sad that Dylan could not do any of this. The thought that a person over a year younger was now more advanced than him reminded me how far Dylan was from normal.

The day my wife and I visited the first school that Dylan would be possibly attending brought me incredible sadness as well. We visited the United Cerebral Palsy (UCP) school near us. Seeing all these severely disabled kids a few years older than my son, depressed the hell out of me. One particular child we saw who was about 4 or 5 years old was suffering from CP, he was sitting in a chair motionless being fed. He looked at us when we walked into the room and smiled at us. The smile was so much like Dylan's. It broke my heart. I pictured Dylan sitting there in 2 or 3 years. My wife and I were both in tears during the tour, despite our best efforts to keep calm and collected.

Every few years there is a get together for Emanuel Syndrome families. We have never attended one as Dylan was born too recently. Melissa insists that we should attend the next one. I honestly dread going there. I am afraid that seeing all these children and adults afflicted with Emmanuel Syndrome will throw me into a deep depression. Just like the UCP visit, it will show me what I have to look forward to, but now on a much more long term basis. I don't think I will handle it very well. I am sure I will get over it, but it will be incredibly difficult to be there.

The one good thing about this stage is that it does not last as long as the previous time it occurred. The things that brought it on before do not continually bring it on again. I have seen many kids Dylan's age now and it no longer gets to me. I have seen plenty of disabled children on additional school visits and it no longer gets to me as badly.

There is always the dread in the back of my mind that something else will happen. Some other shoe will drop, that will bring me right back into this sadness stage.

After having gone through this maelstrom of denial, bargaining, anger, depression, the final and healthiest stage is...