Finding A New Normal

Our first winter in Philadelphia was tough on Leta. She was really sick all the time, and we had to rush her to Children’s Hospital multiple times for pneumonias, RSVs, or the flu. Even the common cold seemed to hit her hard, and she would de-saturate drastically. What should have been normal oxygen levels of 98-100 would go down into the 60’s, sometimes lower. Leta would turn blue and not even her oxygen would help her stabilize. Sometimes, she would end up with a collapsed lung. Our life became an endless round of 911 calls or insanely late hour drives to the CHOP emergency room. CHOP would become our home away from home for weeks at a time. After 8 hours getting through the emergency department, Leta would be checked into the pulmonary floor. Ten years ago, before the new patient room wings were built, rooms were scarce, and nurses were scarcer. It was impossible to get a “single” room, so you always had roomates and no privacy. I would share rooms with other moms who all had a unique look in their eyes. They had the face of someone sleep deprived but with a sadness in their eyes that could only be caused by a traumatic experience; Not unlike PTSD syndrome that war veterans get. I didn’t realize that I had this look too. I was not familiar with hospitals, having never been very sick in my life. My only experiences had been in labor and delivery rooms. So the sounds and smells and urgency was all foreign to me. The constant beeping of monitors and alarms going off made me feel like I was in a combat zone.

And this war I seemed to be fighting, was chronic and unrelenting. A lot of moms on the pulmonary floor had kids with cystic-fibrosis; a disease passed down through families that causes thick, sticky mucus to build up in the lungs and digestive tracts. It is one of the most common lung diseases in children and young adults and it is life-threatening. Even though Leta did not have CF, these moms and I shared an unspoken bond. We know it just by looking into each other’s drained eyes. We bypassed the formalities of polite chit-chat. Within moments of meeting each other, recognizing our common battle, our conversations and friendships ran deep very quickly.

Leta’s lung disease was an anomaly to the pulmonary doctors at CHOP. She was undiagnosed and no genetic condition seemed to fit her pulmonary issues or physical traits. The doctors all scratched their heads as to why her lungs were so damaged. But with each visit to CHOP, I grew to be more and more familiar with the sounds of a hospital. The constant beeping sounds of IV machines dispensing fluids and the alarms of the oxygen and heart monitors, and the occasional CODE BlUE alerts that would cause all the nurses on the floor to triage quickly down the hall. There seemed to be a rule, intuitively understood by parents, that you should never ask what just happened during a Code Blue. Instead, I would lie in bed with Leta, relieved to know that in the continum of care she was faring better at this moment than some other poor child down the hall. There were always kids far sicker than Leta. Some never leaving the hospital again. One minute I would feel sorry for myself and angry at god that my little girl had to suffer, and then a moment later I would be eternally grateful that she was still here. Besides learning the internal CHOP emergency codes: Code Red, fire; Code Amber, child abduction, Code Brown, weather emergency, CHOP was teaching me how to have perspective. Eventually, I would even have moments of great comfort being in the hospital. It was the one place that being with Leta felt normal. I could relax my guard as the vigilante caretaker, knowing Leta was safe.

But at home things began to fall apart. I began to get weepy at night and cry for hours. I would lash out at the injustice that I had a special needs child. And I would even scream to my husband that I didn’t WANT to have a special needs child. As if I could give her back at this point and have a re-do. At home I indulged myself in my pity party. It wasn’t fair, why me??

People with the best of intentions would tell me that “God doesn’t give you anything more than you can handle.” And “how special I must be that God trusted me with his special angel.” These sort of statements just pissed me off and didn’t make me feel any better. I felt justified in my anger. And worse I was resentful of all the other moms out there who seemed so effortlessly to be birthing healthy kids.

I spent a good two or three years being angry. Angry at everything. I was toxic. And besides Leta being medically fragile, she was a complete handful. We called her a whirling dervish, the Tasmanian devil, a small brown bear at times. Leta had extreme ADHD (Attention defecit hyperactivity disorder) and was unable to focus on any one task for more than 5 seconds. This left us chasing her around the house from one mess to the next all day. She had an endless curiosity and could pull things out of drawers, shelves, food cabinets, refrigerators, faster than the speed of sound. Eventually we got smarter and smarter about leta- proofing our world with safety latches, but this didn’t always stop her and she seemed to just get more creative in her ways of destruction. So coupled with my anger, I was exhausted, sleep deprived, which just made me… well, angrier. And this feeling wasn’t mine alone. My husband showed his anger passive-aggressively or in outbursts of OCD. He would go ballistic over dirty clothes in the hamper, or messy closets , or his favorite was screaming at me for “my drawers of shame.” Leta’s sickness was something none of us could fix, so he would try to control the chaos of our life by cleaning or pointing out the little things that I had done wrong that day. I was too exhausted most days to worry about the messy closets and dirty dishes. I resented that that my life had fallen so far from normal. And poor Jack. He was only 4 years old but angry too. He was a beautiful child, out-going, kind hearted and smart, but he would have horrible outbursts. One day while I taking a rare nap, Jack startled me awake, holding his guinea pig 2 inches from my face.

He said, “mom, mom… something is wrong with my guinea pig, he is not breathing.”
I looked and sure enough, the guinea pig he was holding right in front of my eyes was dead.
“How did this happen sweetie?” I tried to ask calmly
“I don’t know,” he said “He wasn’t listening to me and doing what I wanted him to do, and I got mad.”
My heart raced to images of Lenny from “Mice and Men” or worse. Was this an early sign of my four year old child’s murderous pathology? I knew it was time to get help!

Jack was seen by our friend and therapist. Her diagnosis? Jack is angry. He is not getting the attention that he needs and is not being taught the skills to cope with Leta’s chronic illnesses and condition. She suggested we teach Jack the language of special needs. We helped Jack memorize this sentence. “My sister has pervasive developmental delay of unknown etiology and lung disease.” At first it seemed like a foreign language, too sophisticated for a small child to remember, but Jack learned it in a day. When other kids asked him what was wrong with his sister, he no longer had to shrug his shoulders and feel embarrassed, he had answers. Jack was immediately empowered by these words and seemed happier. And to my great relief, there were no more mysterious rodent deaths in our house.

We knew we all needed to find a way to make the anger go away. I decided that my way was to try to have another baby. And when I finally did get pregnant again, my anger lifted. My family was not going to be defined by Leta’s chronic sickness and special needs. We were going to find joy again and find our new normal.

One thought on “Finding A New Normal

  1. Liz Gray says:

    Wow Lainey … Very powerful. Your anger, your husband’s bursts of OCD and Jack’s hamster … Your honesty helps me and others (and I don’t even have kids!). Thanks.

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