My Mom Holding My Safety Net in the Wrong Place

My mom has been my safety net for my whole life. She just sometimes doesn’t hold my safety net in the right places. When I first got sick she didn’t know where to hold my safety net because the professionals were all insisting that there was nothing physically wrong with me. They insisted that I had an eating disorder.

Because she was holding my safety net in the wrong spot, I fell. Hard. And whacked my head on the floor of an elevator when I passed out after a routine blood test. My dad had to rush me to the ER. At the ER a doctor with a monkey fingerling named Mr. Bananas clinging to his stethoscope examined me.

“Becca is extremely fragile right now,” the doctor explained to my dad. “Her medical condition goes beyond what can be explained by simple malnutrition or by the effects of an eating disorder.”

Locking My Safety Net into Position

Once I was officially admitted to the hospital, my mom locked my safety net back in place again. This time in the right location. The tune everyone had been singing was completely different now that my blood tests that measured the levels of inflammation in my body were coming back sky-high.

I also had no bowel sounds, and the X-rays and scans showed that my belly was backed up with so much poop it was practically going to make me explode. I overheard one of the nurses tell my mom not to get rid of any of my vomit buckets.

“We have to make sure that she is not throwing up any of the poop that she is so backed up with,” she explained to my mom.

A Psych Case With My Safety Net Shoved to the Side

Sometimes I looked at Katie’s half of the room. My roommate, Katie, was a six-year-old recovering from a ruptured appendix. Katie’s side of the room was plastered with “Get Well” cards. She had one big giant one from her whole first grade class, where all of the kids had signed their names on it. Katie was, what people thought of, as acceptably sick. I was not always acceptably sick.

Sometimes I was sick. Other times my parents tried to put my safety net in the wrong place. They tried to turn me into an anorexic. Anorexics in the hospital tended to be viewed as a psych case or a waste of space. A lot of doctors, nurses, and aides in the hospital viewed those two labels as interchangeable.

When I’m “Acceptably Sick” My Safety Net is Positioned Right

When I first arrived at Regency Medical Center, I was acceptably sick. I belonged on that pediatric medical/surgical floor just as much as my ruptured appendix roommate.

Every time I started puking my mom would be my safety net and come to the rescue. She would push that red button with a picture of a nurse on it on the remote control attached to my bed. Then the nurse would come in with these little syringes she called Zofran. Slowly, she would push them through the tube in my arm called an IV. A couple of minutes later the nausea and vomiting would slow down.

My Bubbie Beverly is Another Safety Net

My mom and my grandmother who I call, “Bubbie Beverly,” stayed with me every day for the entire month that I was at Regency Medical Center. Not only was my mom my safety net, my Bubbie Beverly was my safety net too.

When my stomach hurt so bad that I lay doubled over in pain, my mom or my Bubbbie Beverly would get me Hugsly. Hugsly was my stuffed penguin that my mom would put in the microwave for 90 seconds. Then he would heat up and I would put him on my belly and he would help some of the pain ease up. If Hugsly didn’t work they would make sure that the nurse brought me a syringe filled with medication to take away some of the hurting. Then they would turn down the lights, rub my shoulder and talk to me in gentle quiet voices.

The Bottom Line is, “I Still Can’t Eat!”

If my IV line came out of my vein and my hand or arm started to swell up like a blowfish, they would get ice packs for it. Then they would hold my hand and play with a teddy bear with me to distract me as the nurses dug around in my arm with a needle. It was so hard for them to find new veins for new IV lines.

During the day my dad was my safety net too. So was my grandpa. They came to visit and acted goofy to cheer me up.

“If you eat something, anything, I will eat an entire banana. Peel and all. Livestreamed on YouTube.” My grandpa promised me.

No Safety Net for the First NG Tube

I just laughed, but it was a strained laugh. He still thought that I could eat if I wanted to. So did the rest of my family.

One day the doctor came in and jammed a tube up my nose, down my throat, and into my stomach. My mom, being my safety net, let me squeeze the life out of her hand. The tube was called an NG feeding tube, and they hooked it up to a big bag of liquid called tube feed. It looked like a protein shake. My nurse showed me the pump on the IV pole that the bag was attached to,

“This pump controls how fast your tube feed goes in. We are giving it to you at a super slow rate right now. Slowly, we will turn it up to get your body used to recieving nutrition.” She explained to me.

The Torture of the First NG Tube

Even though it only went in super slow at first, it made a burning pit in my stomach. The tube feed also created so much intense nausea that I constantly was fighting back projectile vomit. Because I felt so sick from the tube feed, I barely noticed my tearing eyes, my raw throat, and my constantly running nose.

The sicker I got from the tube feed, and the more I complained about it, the more my safety net my mom was trying to hold up for me, slid out of position.

The Sound of My My Safety Net Getting Further and Further Away

She made up a kind of script that would say to everyone who came into the room to take care of me.

“Becca is very sick right now, but this all stared because she was on the high pressure gymnastics team and wanted to lose weight to make her coach happy. She started purposely starving herself, and now she needs to be in the hospital on a feeding tube and an IV and has to get a whole bunch of IV meds.”

This wasn’t even true.”

The Truth About the Gymnastics Team Factor

Yes, I had been on the gymnastics team. I started doing gymnastics at age four, and made the team at age seven. When my mom and Dr. Monroe forced me to quit at age nine, I had been on the highly competitive level six team. But I had never had any desire to lose weight. Because I worked out so much, I had always been thin and wiry and petite naturally. I never really paid that much attention to my size anyway.

Coach Brian had always talked about loving our bodies whatever size they were and treating them respectfully. He talked about eating healthy, but still letting ourselves have treats every one in a while because we deserved them. After every gymnastics meet on Sunday, no matter if we won or lost, he always took us out fo ice cream to celebrate.

The Mystery Disease

I had obviously not started starving myself on purpose. I had something physicallly stopping me from being able to hold down food and the reason I was on all those IV medications also had to do with irregular heart rhythms, too low blood pressures, and out of control nausea and pain.

Looking back, maybe my mom subcosnciously realized just how sick I was and was trying to protect herself emotionally from the out-of-control feelings of knowing her daugher was gravely ill with a disease that she couldn’t fix on her own.

As the doctors continued to run tests, they hit a brick wall. Nothing was making sense. They knew that I couldn’t hold down any foods or drinks. I hadn’t pooped in over a week and my scans showed that I was full of poop. When they put their stethescopes to my belly and listened, they heard no bowel sounds. The levels of my C-reactive protein and my Sed rate were the highest they had ever seen in a kid my age. My heart rate through the roof. The heart monitor was constantly alarming because of my irregular heart rhythms. I barely had a blood pressure. There was no break for my from my intense pain.

All the Diseases I Didn’t Have

On the other hand, they couldn’t figure out what was wrong with me. None of the testing showed any obvious problems. All of my imaging studies showed that my insides looked normal, besides the severe constipation. They drew so much blood every day, but besides the inflammation labs and my corrected malnutrition, everything was normal. My blood counts were severely low indicating severe anemia. But my dad convinced the doctors it was from having my blood drawn so often.

I didn’t have cancer, Lupus, Lyme disease, an infection, or any other weird diseases they’d worked me up for. Now that I was rehydrated, my kidneys were in good shape, and there was nothing wrong with any of my other organs.

Putting a Square Peg in a Circular Hole and Losing My Safety Net

The whole time my parents and my outpatient doctors were insisting until they were blue in the face that I had an eating disorder.

Both my parents had PhDs. In an attempt to put my safety net in place, they had voraciously read all the books on eating disorders they could get their hands on. I think part of their research had shaped their thinking of me. It had allowed them to put me, a square peg, into a circular hole. When my behaviors, emotions and verbalized thoughts didn’t match up with the circular hole, they used some elbow grease, took a lot of awkward forcing, and shoved me in anway. Kind of like my dad insisting that my anemia was from having too much blood drawn.

Then they ratttled off all their proof to the doctors and were somehow able to convince them that the issue was an eating disorder after all. It got to the point where everyone agreed that my inability to eat was a refusal to eat on my part.

The Missing Work Up and Becoming a Psych Case

The extremely important tests that the hospital never ran on me before dismissing me as a psych case, were an endoscopy and a gastric emptying study. The gastric emptying study is the gold standard test for checking for gastroparesis.

Even though my parents were certain that I had an eating disorder, their love for me extended for light years. They just once again had their safety net in the wrong place.

Both my mom and dad wanted the best care for me. Even though the doctors at Regency Medical Center were pushing for me to go to their child psychiatric unit, my parents weren’t satisfied. They talked to my unit’s social worker and researched online nonstop. Finally they found a treatment unit for girls with eating disorders that appealed to them. It was in New York City and the hospital it was in had a special program to find apartments for families of children that were in the hospital there.

My Safety Net Fighting for the Best Eating Disorder Unit

Most of the patients on this eating disorder unit recovered from their eating disorders. Especially the younger children, and they had very low relapse rates. The only problem was that this program was intended for girls aged 12 to 18.

“Sometimes we take girls as young as eleven, but having a ten-year-old here would be pushing it,” the program director told my mom. She was circling the landing zone with my safety net. It was in the wrong spot again.

My mom who is the epiome of the phrase, “you catch more flies with honey than with vinegar,” sweet-talked the program director’s ear off until he agreed that –

“She can stay at the inpatient children’s psychiatric unit for kids age five to eleven, and have meals and some therapy groups with my eating disordered girls”.