I wrote this back in January of 2009
Looking on the Bright Side
As parents of children with chronic health care needs, we are taxed with keeping our emotions in check and not allowing our anxiety to show. Our children depend on us to teach them how to cope with their illness. If we lose it, they will lose it. If we do not cope, they will not learn how to cope. This can be quite difficult in the face of constant stress and new medical challenges. One way that I have learned to manage is by counting our blessings.
One of my children with Shwachman-Diamond Syndrome also has a plethora of other medical challenges. Among other things, he has had neurosurgery for release of tethered spinal cord and dealt with a neurogenic bladder for as long as he can remember. As we stood in an exam room long ago, I had to remind myself, "Pattie, if you don't lose it, he won't lose it. If you lose it, he will lose it. If you don't cope, he won't cope." At that moment, I immediately began to count my blessings and tried to see the blessings in his having to begin intermittent catheterization (IC). It was very hard for me to contain my emotions when the doctor explained our options that day. I knew that everything I was feeling was magnified for Joseph. I knew I had to keep my cool so that I could help him cope. It was difficult to find positives in IC, no doubt, but I knew if we wanted to make it through that first day, we would need to focus on the blessings to get us through. As our friend Angela Brown used to say, "Positive thoughts equals positive results." The first step in being positive is to count your blessings.
I admit that I am not always that great about counting my blessings, especially during periods of extreme stress. Before we began our training session, Joseph and I knelt down and prayed. My heart almost broke when he told me, "I don't think Jesus is with me. If He was with me, none of this would be happening." We later talked about how Jesus Himself cried out from the cross for His Father. I told Joseph that He did that so that we would know that He understood how we felt. We also talked about the positive side of IC while we were waiting for the nurse to come in to train us. We counted our blessings.
It has been life-changing to do intermittent catheterization every four hours during the day. I would be lying if I said I can always see the blessings in IC. The first week of IC was painful beyond measure. When he was upset one night during this first week, I began to talk to him about how we could look at the positives. This new treatment would be hard, but he would be dry and hopefully not have accidents. He would be able to go and play and not have to worry about accidents. He would not have to worry about whether or not his friends might notice. He could come in for IC and go right back out to play. I explained that while he had to restart medication he disliked, we would be doing it on a different schedule so that the side effects might be lessened. These were all things we could check off on the "positive" column. IC would also be protecting his kidneys from damage due to his high pressure, neurogenic bladder.
As he laid there in bed, he cried a bit when he realized that IC might be forever. Joseph said that he wanted to be a normal kid. I told him that I never wanted to minimize his problems or make him think that having health problems or having to catheterize was not a big deal or something worthy of being upset over. After I said that, I added, But, you know, we really need to count our blessings. There are so many children out there who have it much worse. While catheterization isn't fun, you will still be able to go outside and play, you can still ride your bike, play baseball, swim and so many other things. You'll have to catheterize every four hours, but you will still be able to do all of the things you were able to do before."
That night, we also discussed difficult topics. I told Joseph that even kids he feels are "normal" wish they were normal. It can be a normal part of childhood to feel as if you do not fit in, that you are somehow different than others--so what he was feeling was, in fact, NORMAL. We also talked about how everyone has strengths and weaknesses; everyone has struggles and suffering. These topics are not easy to bring up with a child, but they are important concepts for a child to learn. As parents, it is our job to help each of our children build upon their strengths and overcome their weaknesses, chronic illness or not. My one healthy son struggled for many years with reading comprehension problems while my SDS boys never dealt with learning disabilities. We all have problems to overcome, it is only a matter of degree. Counting your blessings is a conscious choice to look at the positive things in your life. While you do have to pay attention to the medical details, you do have a choice about how it affects your outlook.
Feeling better after our long talk, we said our prayers and he fell fast asleep. A few days later, as we were walking into the grocery store, Joseph announced, "Cathing isn't going to be so bad." His dad looked at him and said, "Well, that's a positive attitude to have." Joseph then said, "Well, I learned to look on the bright side from mom." That spoke volumes to me. As a mother, I really do influence how my children cope with adversity. If I am negative, then they will be negative. If I am positive and count my blessings, then they will learn to do the same.
Intermittent catheterization is our latest hurdle to overcome, but we have used the "technique" of counting our blessings to cope with the many other medical issues we have faced in dealing with Shwachman-Diamond Syndrome and Mitochondrial Disease for many years now.
Joseph's Point of View: Looking on the Brighter Side
By Joseph Curran
I am eleven and I have Shwachman-Diamond Syndrome and I have to do something called intermittent catheterization (IC). Life hasn't always ben easy, but I try to look on the bright side. I learned to look on the bright side because my mom taught me to. I was upset by IC until I looked on the bright side.
Since I was little I have had a lot of medical procedures and surgeries. I started looking on the bright side of things and got through the procedures and surgeries better. I learned that even when I am sad Jesus is with me, even when I think He is not. I learned to cunt my blessings and look on the bright side and that there is always something to be thankful for. Looking for good things when life is hard makes me feel happier.