Recipe for Disaster

Recipe for Disaster

I love mashed potatoes, there – I’ve said it—boring, white, fluffy, buttery, mushy mashed potatoes, steaming from the pot. My eldest daughter, Jessica, also loves mountains of mashed, earthy potatoes. Jess is unable to chew functionally due to a rare chromosome deletion and developmental disabilities. When her food is not a proper consistency, it can be a Recipe for Disaster. Mashed potatoes are her ideal food.

Recipe: Mashed Potatoes

Ingredients:

4 pounds of russet potatoes

2-3 cloves of garlic, optional

1/3 cup butter melted: salted butter optional

1 cup of milk or cream (confession – I use water or vegetarian vegetable broth)

Salt and pepper to taste

JESSICA

Jessica was diagnosed as delayed in all her milestones when she was six months old. At age 21, a new genetic test called FSHD (the words and definition are so long and complicated, I will use the acronym and call it a day!) determined her accurate diagnosis. Essentially, FSHD is a simple blood test that allowed our geneticist to accurately determine that Jessica was missing DNA in her first chromosome. Her official diagnosis is 1Q43-44, which is more of a location of her missing DNA on the first chromosome than a recipe of her symptoms.

Our daughter requires assistance with all the daily tasks of her life. Think of every single thing you do, from waking up to the moment you go to sleep, and that is what Jessica needs help managing. Yet, with all her daily struggles, she finds the strength to take each day with a smile and a sense of satisfaction. Her lighthearted, carefree demeanor is one we can all learn from. That is why, when Jessica shows any distress or discontent, we must pay attention.

Jess is 43 years old, and at age 25, she moved into a group home for individuals with developmental disabilities. Her home is two miles from our house. The five women-friends-housemates have round-the-clock staff who assist, including preparing food with the correct texture and consistency. Jess will choke if there are large, chewy, hard, or chunky pieces. Her food is ground up in a processor. As parents, my husband and I must have daily faith that her staff members pay attention to the details — all the ingredients. Food that is not prepared correctly can be a recipe for disaster.

Speaking of Recipes

Peel and quarter potatoes in a pot of cold salted water. (I use Imagine No-Chicken Broth instead of water to boil the potatoes.)

Add cloves of garlic (if using) and bring to a boil. Cook uncovered for 15 minutes or until fork-tender. Drain well.

Heat milk on the stovetop (or in the microwave) until warm. (I save some broth to moisten the spuds instead of milk.)

Add butter to the potatoes and begin mashing.

Pour in heated milk or the broth a little at a time while using a potato masher to reach the desired consistency.

Season with salt and pepper. Serve hot.

Thank You, Alex

Mashing potatoes always reminds me of the day my son, Alex, visited his sister, Jess. This was before our current house manager and staff. Jess seemed off that day – her eyes were bulging and watery, and she was congested – yet it was more than that. She wasn’t her happy, engaged self. My son couldn’t put his finger on her symptoms, but was listening to her non-verbal cues. He mentioned his concern to the staff, who replied that Jess was fine. Staff continued to say that Jess looked like she was getting “sudden” congestion. Alex thought, “Huh? How do you get sudden congestion? This can’t be right.”

Call 911!

Alex clearly wasn’t satisfied with that response. He called me at work and said I should go to Jessica’s house immediately.

I arrived fifteen minutes later and knew instantly that Jess was in crisis; she was choking. “Call 911,” I screamed to the aide. By then, my husband, Mitch, had arrived in a separate car. Jessica’s pulse-ox (oxygen level) was good, but her watery, bulging eyes revealed more than simple sudden congestion.

The EMTs arrived and whisked Jess into the ambulance while Mitch and I followed in his car.

Once we arrived, Jess was quickly moved to triage, and that is when miraculously, mysteriously, magically, Jess loudly coughed and threw up a friggen, fully intact red potato. It looked at first as if she had expelled an organ! Yes, I have photos, and no, I will not share, or you will never eat potatoes again. We still do not know why her oxygen level was good or how she was able to breathe with a solid spud stuck in her throat.

PHEW!!!!

Mashed

The physicians monitored Jess for a bit, and eventually, she received the all-clear from the hospital and returned home that evening, back to her smiling, humming-a-tune self. I cannot say the same for the rest of us—we were like mashed potatoes from the stress of the event and all the “what could have happened.”

We rely on family, friends, and caring, observant staff to protect from Disaster

Our son was a hero that day. His instincts rose above the staff’s dismissive reply, and we are forever grateful.

New protocols were implemented at Jessica’s home. Jessica’s food is carefully monitored for texture and the size of the pieces before being served. This incident occurred in 2012, and we pray it will never happen again. We are fortunate to have our current house manager and staff, who are always aware of Jessica’s dietary consistency needs. And we rely on family, friends, and caring, observant staff to protect Jessica from harm. It’s a daunting thought; if I dwell too much on it, I can drive myself nuts.

Consistency and Attentiveness

Even though Jessica is in a group home, she is still our daughter and still needs intense family involvement.

Mashed potatoes are still my favorite food, and always a reminder of how things can change in a moment. Consistency and attentiveness are essential when mashing potatoes and caring for those who cannot care for themselves.