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.

Thursday, April 7, 2016

How Church Can Help You Love Like A Sunbeam and Shine Like A Catholic Mother


I was raised to attend church every week. As I did that with my family growing up we made friends and were able to give and receive help. I know I am blessed to live in a country where I can do it now with my own husband and children. In both instances my family became a part of a congregation of people with shared values and shared experiences that united us with our fellow church goers. These experiences shared together, life experiences - some, where you help someone or they help you to come through a hard time, and also spiritual experiences where you feel the power and love of God together can be found no where else.


Lately two experiences have crossed my mind about why I am thankful for church and being a part of a congregation of others who worship God in a similar was as me. One of the experiences is mine, and the other is one I just observed. My experience is not linked to an outstanding life event like death or even really tragedy, just a rough spot in my life.

I was in the middle of an emotional place. Changes had come my way that I did not expect. Both physically and emotionally I felt rotten and was finding it hard to keep my mood up. It was easiest to think negatively about myself and what was happening in my life.  

During this same time I was given the opportunity to change my job, or “calling,” at church. I had been working with the teenage girls for a few years in my neighborhood church, but at this time the change came for me to work with the 3 year olds. In the church I belong to the class with the children who are the age of 3 are very correctly called “Sunbeams.”

I walked past the other children and adults in the room and sat down on the front row with the Sunbeams. I felt the same negative thoughts about myself begin to play in my head that had been so frequent as of late. As I sat there completely absorbed and wallowing in my self-inflicted pity party one of the little girl Sunbeams came and stood next to me. Soon she was on my lap. Next she gave me a hug. Then she raised up eye level with me and stared at me for a while. She smiled and raised her Sunbeam hands to my eyes and started touching my pink eyeshadow very softly. She spent the next two hours being my friend, me her new teacher who she completely accepted and was ready to love just for being there.

The only guest I had at my pity party left right then and because of her kindness and acceptance I was able to focus on being a friend and serving someone else. I was so grateful for her Christ like example to me and use it as inspiration for how to accept and love people around me.

The next experience I keep thinking about in regards to being a part of a religious congregation happened while I was at work in a Catholic church. I was working as part of a wedding film crew. The bride’s family that we were filming that day was very special. The father of the family was a very loved and admired patriarch who was suffering from ALS. At this point in his disease he was not able to speak or move on his own and was restrained to a motorized wheelchair. The whole day as we were with this family from early morning to late night I was very captivated to watch the meticulous care and concern his daughters and wife gave him on this busy and grand day for the family. He was never forgotten about or not included (including his daughter pushing him around the room for their wedding dance together). But throughout all this display of love for this father on this day what I think about most often is what happened during the Catholic communion line.
As the congregation participated in communion the line exited past this father and mother of the bride. The mother stood proudly next to her husband in his wheelchair. Each member of that congregation walked past this couple. I stood behind my camera and watched as each one made eye contact, touched hands with, and expressed love to not only the wife who could respond back to them but also to her husband who could not. These people clearly had a familiarity with this family and this man and wife. They had seen him as he was before his disease took over his body. They had watched the change happen to him and surely had walked a few steps with this shining Catholic mother who gracefully was walking up the mountain put before her.

I was so impressed! The love and Christ like example shown in that Catholic congregation has stuck with me ever since.

It is very comforting to see that as I participate in my religious congregation and as I have seen others participate in theirs, God works through his children to uplift and give light to the dark places in our lives.  
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