People often comment that they do not know how we do it (raise a large family with such difficult medical needs), implying that somehow we had a choice in the matter. They hint that we requested or raised our hands and said yes to our children having psoriasis and that we demanded the majority of the kids have Juvenile Arthritis and oh, we wanted a smattering of Chrons along with a rare often fatal disease. Our fingers wiggled in the air and we asked for a few of the kids to have a form of dyslexia. The whole notion borders on insanity to think I somehow controlled what genes my children would receive at conception.
A few times a year, I have strangers in front of my children demand to know why we
have five kids with complex medical problems when abortion is legal in the United States. There are so many ways to address this but I keep it very simple and I ask the person which one of my kids here should I have killed? One hundred percent of the time, that statement shuts down this line of inquiry.
I have never regretted any of my children and I thank God every day that He has given me the perfect family. I am not going to lie, life has been a struggle and at times, so incredibly hard. Honestly, I don’t know what kind of person or family I would have without these difficulties. Study after study has shown times of extreme difficulty can split families and that the divorce rate is much higher in these situations. In my family, it has done the complete opposite. It has driven my husband John and me closer to God. It has made me
a better Catholic who relies on faith. My husband converted to Catholicism 26 years into our marriage in part because of the testament of our family and the miracles we have witnessed.
Some of the things that have happened can only be explained by saying God was with us and heard our prayers. I have always felt God’s presence in the middle of a crisis. I have little understanding when I read the research that shows people turn away from God in bad times. All I have left in those times is my loved ones and my faith. I live my life in the moment. I cannot change the past but I can learn from it. The future can be very scary at times not knowing what will happen, especially when it comes to my kids. I cannot worry
about a future that I have no control over. I am no saint and sometimes the doubt and worry creeps in, and I am left feeling hopeless. It is then my prayers turn very simple; “Help me." or "Help my child.” and “Thank you for one more day.”
There are times my children struggle also. When the negative and venting becomes too much, I make the kids list all the positives that juvenile arthritis has brought into our family. Our list has reached 86 positive and wonderful things from a disease that has taken so much away from us. I am grateful for the adversity and what it has taught me. I don’t pretend to understand why any of this has happened. "Why me?" or "Why my family?" has never been in my vocabulary. I rejoice in the simple things of life and I can thank God every day for the love He has given me and for my not so perfect family.
I can wax and wane about daily living with a child with a chronic disease. I can give you tips how to manage the multiple doctor appointments, with homeschooling, scouts, and a full-time job. I can tell you how to keep all the balls in the air that you are juggling. The first thing I would say is believe and have faith. If you struggle and don’t believe or have faith, then bring those concerns to God and ask for help from Him. God does not ask us to be perfect. Hopefully, you will discover as I have; it is not a life I would have asked for or even could have imagined. But at the end of the day, it is a pretty darn good life, and 100 times more than I could have dreamed.