Parenting a Liver Child

For those of us who have the privilege of parenting children with liver diseases, life has taken a decidedly different turn than we could have imagined. I doubt any of us woke up one day and said, "You know what, it would be outstanding if we discovered our child has a life-threatening liver disease." This kind of challenge and excitement we could all do without.

As we have learned, we have no input into caring for a child with biliary atresia or the myriad of other liver diseases. But we do have a choice with how we deal with it and the example we set for our families and friends, and particularly for our other children.

I think I can speak fairly confidently that all liver families have had their days where they thought they were walking this frightening path alone; where we were ready to throw in the towel and surrender; where we kept thinking, "why our child?"; and where we really thought we were at the end of our rope mentally, emotionally and physically. We may have been concerned  with what this looks like to our other children or for those close to us. I know I have. It's not so much the image I portray to them but how they see me dealing with the stress, the separation, and if they think they are loved less because so much time is spent with another child.

This is particular difficult for very small children. Our own Katarina was not yet 3 when Sarah was diagnosed with biliary atresia. We spent almost two weeks in the hospital completely away from her and our two older children. The subsequent long hospital stays when my wife was away from home for many days at a time took a visible toll we are all still recovering from. Katarina felt it perhaps more than Caleb or Arianna, though they certainly suffered as well.

My point for this post is three-fold. First of all, never fall for the lie you are alone. We all share life together and we need to let a network of concerned people, whether friends, other families or complete strangers. The "strangers" - other liver families - we have met have blessed us as I have documented before. So, first, get a lifeline. Second, try as best you can to break away from the hospital to spend quality time with your other kids. We failed in this regard before we finally found a routine that worked. Yes, we were emotionally and physically worn, but it is absolutely essential your other children realize how much you love them as well as their sick sibling. Do what you can to explain the illness and why you have to be with their brother or sister. Just love on them the best you can.

Lastly, know there are others right where you are and who understand what you are going through. We may be dealing with different liver diseases and degrees of urgency, but we have all lived through learning there was an illness that was threatening our child's well-being. Live your life, seek help, love one another and get time away. It's imperative each parent gets a break from the daily grind of hospital life. There is too much at stake not to do so.