Dear New Parents:
Congratulations on the birth of your precious daughter!
We are beyond excited to welcome you to the Parents of a Child with a Rare Metabolic Disorder Program here at the College of Parenting (COP)! As you know, the odds of being accepted are one in 60,000, so this is a prestigious honor.
Because the training can be intense, we like to give you an outline of what your family can expect in our program. After a not-brief-enough “boot-camp” featuring sleepless nights marked by projectile vomiting, your daughter will be unnaturally lethargic and turn a sickly shade of yellow, after which you will be thrust into the Neonatal Intensive Care Unit (NICU) where you will begin the second phase of endurance training.
There, you will learn to advocate for your eight-day-old daughter as she is poked and prodded by every medical intern, surgeon, and random doctor within a 100-mile radius of our teaching hospital! Plus, you will learn the basics of genetics. Specifically, how both you and your spouse must carry the same recessive gene, and both of you must have passed it on to your child.
Your daughter, who lacks the enzyme to break down galactose – a sugar found in all dairy products and some fruits and vegetables – will be enrolled in her own partner program, known as galactosemia. You will learn how fortunate you are to have the diagnosis early enough to prevent her death or possible intellectual disabilities, and also that she must adhere to a dairy-free diet for the course of her life.
We pride ourselves on our supportive community here at COP. That’s why Easter Seals will be making home visits for the next three years to evaluate your child’s developmental progress, through speech and play therapy. Every month a benevolent stranger will enter your home, “play” with your daughter, and determine whether she is on track to become a typical little girl. “Play” will include watching your daughter take a bottle to determine whether the muscles in her mouth are developing properly, then ensuring that she can wrap her lips around a spoon. Eventually, your daughter and her Easter Seals friend will separate cute plastic teddy bears into color-coordinated piles and “talk” about her favorite activities, like swimming and going to the zoo.
We focus on the whole student, so we’ll teach you how to make delicious dairy-free meals for your growing child, which consist primarily of pasta with olive oil and salt, potatoes, and hamburger meat. Plus, we’ll show you how to ensure that well-meaning parents of “normal” kids don’t give her ice cream at birthday parties or make her feel any less ordinary than their own children by singling her out in front of all the others or absolutely insisting that she take a piece of cake. Further, we’ll teach you how to deal with the teachers who routinely forget that your child cannot participate in the pizza parties her class will receive for reading the most books in a single month.
Additionally, we’ll give you pat answers to use in response to repetitive questions regarding your daughter’s “condition.” Relevant topics include: Why My Child Can’t Have Milk with her Cookies; Why a Metabolic Disorder Is Different from an Allergy; Why You Should Keep Brown Sugar Cinnamon Pop Tarts, Plain Microwave Popcorn, and Hot Dogs on Hand When You Invite My Daughter Over; and so much more!
Here at COP, our sports teams consistently outrank our competitors. You can be part of the legacy by choosing any or all of the following: Running interference between your husband and the completely unnecessary specialists who are utterly fascinated by a child with such a rare diagnosis; keeping your sanity while explaining to well-meaning distraught friends and family members that while it is certainly nothing you anticipated, it could be so much worse, and juggling the logistics of your toddler son’s pre-school activities with your newborn’s doctor visits and nap schedule.
The best part of our curriculum? No upfront monetary fees! Your only payment will be in the form of exhaustion from sleepless nights with a fussy infant, anxiety over your daughter’s future, depression related to all of the aforementioned, and a healthy dose of reality combined with a hearty helping of humility when visiting the Children’s Hospital and realizing how lucky you really are.
By now you understand why our rigorous curriculum is top-notch. We believe good parenting lies in your ability to withstand daily tests of patience, medical knowledge, physical stamina, and mental acuity while somehow maintaining a calm demeanor and loving marriage. We guarantee you will be surprised at the depth of your resilience and appreciation for your supportive spouse.
Once again, welcome to the Parents of a Child with a Rare Metabolic Disorder Program at the College of Parenting, where our motto is: No Matter How Badly You Want it to, the Education Never Ends!
A Cuero, Texas, native, Jennie Badger has lived in San Antonio since graduating from Trinity University. She has worked in public relations, practiced law and voluntarily directed middle school musicals. Currently, she is a co-director/producer of Listen to Your Mother San Antonio. She has recently begun flexing her creative writing muscle and is thrilled to be published in Hippocampus Magazine. Jennie and her husband of 24 years are parents to three children.STORY IMAGE CREDIT: Flickr Creative Commons/Sara Stasi
