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?"
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.
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?"
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.
ReplyDeleteI 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.
Delete