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Parenting with Crohn's Disease
After finally getting our kids to bed, my wife and I were frantically trying to get ready for our weekend vacation. OK, to be accurate my wife was frantically trying to get us ready; I was trying to stay out of her way. Then it happened, we heard our 4 year-old crying from his room. We both rush upstairs to see him sobbing covered in vomit. The poor guy was really upset and my first reaction was to run over and hug him, vomit and all. Then I remembered I cannot do that anymore.
A Iittle background
I went into the ministry because I enjoy being with people who are in pain or loss. I know that sounds wrong, but the time spent with someone in pain, helping them, listening to them, is when I feel I have been the most useful to others. If you follow Myers-Briggs, I am a Feeling Male, which means I value how people feel and want them to be better. So when my child began throwing up, I had to force every instinct down and take a back seat to the whole operation.
Let me explain, last year I was diagnosed with Crohn’s disease. It is an IBD (Inflammatory Bowel Disease) which as best as I can understand it (my degree is in Divinity, not Biology) my body is now ready to attack any foreign substance in my large intestine. My body also has no problem with destroying the large intestine to get at the foreign substance, which is basically the food that I am done using. So after about four months of losing 10 pounds each month, a trip to Mayo’s and many, many tests, doctor visits, and painful trips to the ER later, I finally have everything under control. Or as under control as it is going to get for a long time. Now we get to the problem.
Due to the medication I am taking, my immunity is down. If I get sick, I get REALLY sick. This wouldn’t be a problem if I was living in a bubble, but I am the father of two kids, a 4 year old boy and a six month old girl. They are the joy of my life, but as any parent knows, kids are a biological weapon waiting to happen. My son goes to pre-school, so he is surrounded by kids all day, which means he is faced with germs constantly. Whenever either child gets sick, I have to go into the guest bedroom while my wife takes the brunt of the care and exposure to the disease. This is really hard on my, because I am hard-wired to care for the sick and in pain.
This disease is very much a learning process for me. I am one of the lucky ones where the medicine I have been prescribed is actually working on the disease. Many others have to face countless surgeries and pain that can never be relieved. It is a very painful process to be diagnosed and to live with Crohn’s disease, or the sister disease Ulcerative Colitis. Both challenge the way of a person’s life and force them to make new decisions about how to deal with others. In my job I have to go to the hospitals on an irregular basis, but my presence is needed there when I get called. I have to try and be as healthy as possible so that when I get exposed to sickness I have a slight chance to not get sick myself.
It is unfortunately better for everyone if I stay out of the way when someone gets sick. This is a long thought that ends with the following question:
Is there anyone else with this same dilemma? A parent, or care person who struggles with a chronic and challenging illness and would like someone to talk with, share resources or whatever? I am open to suggestions, thoughts, or even corrections to my understanding of Crohn’s, as I have only had it about a year now. I guess, I really just want to know if others feel the same way I do, or am I just whiny?
If you would like to know more about Crohn's or Colitis, www.ccfa.org is a great website.