I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Sunday, June 14, 2015

Seeing the Blame Through His Eyes

I have heard from other parents and seen in my own short time as a parent that my own flaws are magnified back to me to see clearer than ever through my children. When these moments of clarification randomly are received through daily interactions and family life it can be very powerful.

Last week Charles and I were sitting at the kitchen table. He quietly mumbled something to me, which I didn’t catch, and then said “never mind.” I asked him to please say it again. He said, “Mom I know it’s my fault that Orson had to get his button.”

What? Seriously? This sweet 6 year old brother is trying to take this on himself?
I assured him that in no way was he responsible, should feel responsible, or was to blame for Orson’s g-tube button, and then asked him why he thought he was. He said that he knew it was his fault because he always ate his food so fast and then would leave the table to play. When he left, Orson would want to leave too and that’s why he didn’t eat very well and that’s why it was Charles fault for Orson needing and getting a feeding tube.

My heart ached for the conclusions that he had drawn, had been blaming himself for, and had been carrying around with him. We immediately talked more about the facts behind Orson’s feeding tube, why he got it, etc so that Charles could understand better that it was absolutely in no way his fault.
That’s when the magnifying glass appeared and I recognized my own guilt, similar to Charles’ that the g-tube for Orson was my fault. It was pretty shocking to me to realize that Charles at age 6 would blame himself for his brother’s physical trial that he had no control of, but I was doing it too – not blaming Charles of course but myself.

 Thinking of Charles and my similar feelings towards this peculiar, foreign, and challenging part of Orson’s life I wondered why Charles and I searched for who was to blame for it, and found that we thought it was ourselves. I realized that these were dark thoughts, not thoughts and feelings of lifting and love that would come from our Heavenly Father, but dark thoughts meant to stop us from feeling joy and having the ability to easily move forward and work. Hugh W. Pinnock in 1989 said, “But to judge, blame, and not forgive always intensifies the problem. It pushes healing further into the future. It is not responsible.”
We needed to focus on being responsible with our thoughts, not going on a blame hunt then wallowing in our supposed findings. We, Charles and I, and especially me as the grown up mother need to ask more fervently for comfort, peace, and help from Heavenly Father to not dwell on blame, guilt, and the darkness in my heart that comes from those feelings for something that I know I wasn’t ultimately responsible for. The g-tube is part of Orson’s life for a while we need to work with it, help him protect it, care for it, and use it for what it can ultimately do, which is greatly improve his health now and long term. I need to look to the light that comes from the Atonement of Jesus Christ and the endless ways that it can start healing now, and not push it further into the future.

I am grateful as a child myself to a Father in Heaven who allows me to learn and grow and use what He gave me through the atonement of His son and my brother Jesus Christ. I am also extremely appreciative to see love through my children’s eyes.



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