Monday, July 20, 2015

Haunted By PBS : I Want To Change My Answer


       Last October I was able to participate in a market research study. It paid me $200 to spend a few hours on a bus with 4 other women in my similar age bracket. The bus drove us around to a couple of large chain retail stores to compare their Halloween displays and discuss what we thought about them. I have found when I finally make it to the end of all the preliminary questions on the surveys for these studies I know I have made it into the group they are looking for when the over-the-phone interviewer gets past what brands of laundry soap I use and finally asks me a super deep “yearbook question.” What moment in history would you like to go back to witness firsthand? What would you tell the high school graduates of today if you could give them one piece of advice? For this Halloween candy display study the question was, "if you could live in any era of time other than what you are living in now which would you choose and why?"

        It was an easy answer for me. I have dreamed of what it would be like to live in the late 40’s early 50’s post WWII era for a long time. I love the hair, clothes, homes, décor, etc and have thought it would be fun to live in a time like that. Then this past year I was thrilled to find the PBS show “Call the Midwife,” which takes place in the 1950’s. I quickly became hooked on the series. Not only did I love how the stories of the characters and women delivering babies intertwined with interesting social issues but also it was so cool to see the hair, clothes, homes, and décor I love while watching.

         There is an episode of the show that has haunted me. Haunted is dramatic, I should say instead, it has given me a reality check in why I am extremely grateful I don’t live in 1950. It is the CF episode. The family being spotlighted in this episode has a mother who has delivered this new baby, her second, and is really struggling with it. She is constantly feeding the baby, can’t keep up with his diapers (of which she thinks are strange diapers, and not at all like her first baby), and can’t satisfy the baby despite her best efforts. She can’t keep up with the amount of diapers and bottles. She is made to look like in the beginning of the episode, perhaps a mother who just can’t hack this second child, or maybe has post-partum depression, etc. Then at the end of the episode it’s discovered that the baby has CF and is experiencing all the symptoms of having a pancreas that isn’t able to do its job and the Mom isn’t crazy at all but has a baby with a body that needs medical help to function without severe abdominal pain.

        I have been thinking a lot of that episode of Call the Midwife while I sit and feed Ruby. I hadn’t before thought of or been able to see in such realistic light the mothers of CF children from the generations before me. I realized how blessed I am to know how to help my babies. Even in just these past 4 weeks we have seen the difference that going from zero, to one, to one and a half, to now two capsules of Zenpep (that’s Ruby’s brand of pancreatic Enzyme) has made on her disposition and well-being as she grows a few ounces each week. 3 times her dose has gone up in 3 weeks of life, carefully calculated by gram by very educated CF specific nutritionists.  I can only imagine the desperation that I would feel to see my baby clearly in pain, clearly not experiencing proper digestion, and not knowing why or how to help.

         It has made me extremely grateful that I can give her the help she needs for her stomach to not constantly be cramping and aching like it would if she didn’t have her enzymes. I am very thankful that I don’t have to live in the medical world of 1950. That I can instead borrow the hair and red lipstick of the era when I am feeling up to it, and keep the phenomenal medical advances that have been made for my children in 2015. Plus I also get to use disposable diapers, which is pretty incredible too.  
Image result for call the midwife cf episodes 

2 comments:

  1. Kamarah, I just started reading your blog today, and can't stop reading it! I just happened to come across your blog while searching for information about CF for a college assignment I am doing. I am working with a partner on this assignment, and through our discussions we learned that we both have CF in common. She has a 5 year old daughter with it, and my brother and sister died from it in the 60's, two years before I was born. I remember the CF episode in "Call the Midwife" very well! As the mother spoke of her child tasting salty, I immediately was drawn into the story; I KNEW what this episode would be about, and it gave me a small glimpse into what my parents probably went through back during a time when there was little information or treatment. Yes, you are truly blessed to be living today, when there is so much more information, and treatments for children with CF. Reading through your blog, I can see that this is not easy, and I have so much admiration for you and your husband and for the voice you have for CF. Thank you for sharing this part of you and your beautiful family. My heart goes out to you all.

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    1. I am so happy you found our blog and that you enjoyed reading it! I hope your project is a success and I am happy to meet another member of a CF family.

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