Being a Father of a Chronically Ill Child
Supporting Fathers
What I want this space to be is a place where we as men can come together and share our experience of dealing with being a father of a chronically ill child. There are few if any venues where men can talk about things that are tearing them apart without worrying about being shamed or criticized. This blog is the safety zone where you can sign in using a fake name and maintain annonimity and get and share info about what is really on your mind. To know you are not weak , you are not crazy ,and most importantly you are not alone. We are here to help one another through the most terrifying experience a father /parent can go through. The possible loss of our child.
This is not a BS forum. It is not to bitch about Doctors, Insurance nightmares, difficult circumstances, or religious views. We are here to give and get front line help from those who are in the same boat. Weather you are just starting out or are in a long time, we can lend an ear and support each other when the other is down or hurting from watching his child suffer, a fathers worst nightmare because we can’t fix it.
Being a Father of a chronically ill child myself, my intent is to build a nationwide network of fathers who have been helped and are helping those coming behind. There are 32 million of us dealing with a chronically ill child, and my research says we as dads are not handling it well at all. This is an opportunity to turn our selves into a healing force that is changing the face of family life. Will you join me? I will lead by example and together we can blaze a new road that is somewhat smoother.
I feel that this site can be a good vehicle for trading thoughts and feelings with other men who face some of same issues that I do. Guilt, helplessness, fear, anger, sadness, frustration are all feelings that have to be dealt with daily. Nothing is harder than watching your child constantly suffering. Other than the homecare nurses that are present 16 hrs. per day in our home, I am the primary caregiver for my son James. Because he is a male, I have assumed many of his daily maintenance requirements, including washing and toileting. Just getting him from one position to another is often agony for him, something I will never get used to seeing. Through all of this, I am unofficially expected to be the “rock” of our family. After one of his more recent long hospital stays, during which he experienced cardiac arrest (which resulted in a permanent vent, trach, and g-tube), and was hospitalized for over 3 months, I knew that I needed support…I couldn’t hold up over the long run. Some friends of a friend of mine from work that belonged to a non-denominational church came into the ICU ward where James was being cared for, and prayed for him while consoling us, even though they were meeting us for the first time. I was impressed by their genuine sincerity, and have since become a member of this church. It provides me support from people who really care, and an opportunity to help others in need, which I find is a great comfort to me. I am not necessarily promoting religion as the answer for everyone, but I do think that it is critical to get support from somewhere outside the immediate family. We men may feel we have broad shoulders, but we cannot do it alone.
I feel that this website will be very effective in providing a forum whereby fathers of chronically ill children can express their thoughts, feelings, and suggestions. Dads also need support…mothers are commonly thought to be more emotional and in need of support, while fathers are supposed to be the “head of the family”, the “rock” in the face of adversity. It is our job to keep things stable and keep the family together. This responsibility at times can be overwhelming…we need outside support systems just like anyone else.
My son, who has Duchenne’s Muscular Dystrophy, is 24 years old and confined to wheelchair. A couple of years ago, he had a septic attack due to an infection which resulted in cardiac arrest, and had to be revived with electric paddles. After 14 weeks of hospitalization and rehabilitation, he returned home with a permanent vent, a trach, and a feeding tube. Our entire family was especially stressed during this time, and I discovered that I desperately needed to expand my personal support systems. I found tremendous support in a non-denominational church that has provided me with a large group of compassionate, supportive friends. I am not advocating any particular religion, or religion in general, but this route worked for me…we all have to find our own way through the trauma that we face in our lives. Hopefully, this website can help fathers in similar positions to communicate and offer advice, thereby becoming a useful source for support.