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3 Potential Career Ideas for Parents of Children With Propionic Acidemia

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Maya and CJ smiling
CJ and Maya.

I am a full-time language arts teacher and a part-time small business owner. I am also the mom of two children with special needs. Both Maya, age 6 and Christian, age 3 were born with a rare metabolic condition called propionic acidemia (PA). The genetic condition does not allow their bodies to process protein properly. Children with PA are on a very strict/low protein diet in combination with specialized formulas and medication. They require many appointments with a genetic team and need their health monitored closely.

Managing my children’s care can often feel like its own type of job, which has provided me with several skills I would have never predicted to be part of my everyday life. If my career as a teacher or small business owner does not work out for me, I can think of at least three other careers that I am highly qualified for thanks to PA.

1. Mathematician/scientist. While some children with PA are tube-fed, Maya and Christian both eat by mouth. Maya is allowed to consume 12 grams of protein daily and Christian is allowed 8 grams. Reaching these precise numbers requires a lot of counting, weighing and calculating. My kitchen often looks like a science lab filled with scales, measuring cups and food journals. For example, if Christian wants chocolate-covered raisins, I look at the nutrition label and see ¼ cup equals 2 grams of protein. Then I see that a ¼ cup is equal to 32 chocolate-covered raisins. After I watch Christian eat to make sure none of the raisins end up on the floor, under the couch, or spit out, I recount that he ate 21 of the 32 raisins which equals 1.3 grams of protein. I add it to the food journal. This meticulous counting continues all day, every day, for both children.

2. Nurse. Like many other special needs moms, I have become well versed in the lingo used by nurses in order to fully understand the care my children require and crucial updates to their health. Because of PA, I’ve learned all about ketones, emergency room protocol plans, metabolic disorders, deficiency of enzyme propionyl-CoA carboxylase, amino acids, hypoglycemia, acidosis, hyperammonemia and cardiomyopathy. But while I may be able to talk the talk, I can’t even imagine the amount of skill and compassion nurses bring to work each day and appreciate every second of what they do for my children.

3. Event planner. With propionic acidemia, every small event becomes a big event. Leaving the house requires an extensive amount of preparation and packing. There is never a time my husband and I can just grab the kids and go. One day of travel requires a whole week of planning ahead. If we are able to have a family member babysit for a few hours, we need to spend more than a few hours preparing, planning and packing. This kind of attention to detail and planning for any and every kind of emergency would certainly come in handy in making large-scale events come together (hopefully) seamlessly.

While propionic acidemia has changed our lives in many ways and created a reality of counting, tracking, planning and medical terminology, we always look at the positive things PA has brought us. It has brought us two beautiful children who bring love and compassion to everyone they meet. Propionic acidemia has brought us closer as a family and has led us on a journey of acceptance and understanding.

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Originally published: July 11, 2016
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