Monkey Wrenches of Mamahood

Just when I was flying high; the summer ended wonderfully, Zee was getting ready to start her new school, and I had a few days free, which I was planning to use to get some organizing done in the crib, the bottom fell out.

It was 5:30 am on Tuesday, September 7th and Zee woke up complaining of a headache and she was holding her right eye. She’d also wet the bed, which is something that hasn’t happened in several years.  Spence cleaned her up and once her bed was stripped, she snuggled up to me on the couch. She then let us know she had to use the bathroom and since she was still groggy, Spence scooped her up, plopped her on the pot and left her to do her business. He returned less than a minute later and she was slumped over to her left, foaming at the mouth.

He called her name a couple of times and this is when I ran into the bathroom. She was totally unresponsive. We ran with her to the couch and laid her on her left side as Spence called the ambulance. I grabbed up my wallet, a small blanket and phone and kneeled beside her as her body began to shake and her left arm and leg flailed about wildly.

I was scared sh*tless.

All of our friends and family know that Zee was born with a congenital birth defect called pachygyria (her brain is loosely coiled in one spot, making it a bit more difficult for the electronic messages to get to where they need to be) that manifested itself when she was about seven months old. All of a sudden, while on vacation in Florida, Spence’s grandma noticed that her left arm was bent at the elbow and her hand balled tight into a tiny fist. Once we returned to New York, we took her to her fabulous pediatrician and were immediately set up with early intervention, a neurologist and orthopedist.

By the age of one, she’d been poked and prodded, full body x-rayed, had an MRI (where they had to put her under) and began twice weekly physical, speech and occupational therapy. The pacchygyria is in her right brain, so it affects her left side. By two, early intervention added a special educator who worked with her twice a week on pre-academic skills and she finally walked by herself completely around 2 and a half. She never crawled.

At three, she entered a pre-school that was intense. By the end of her first year, she was walking up and down the stairs without mama’s help and doing all sorts of fabulous little-people stuff. She’d completed her first year of dance at The Harlem School of the Arts, which helped her balance and sense of her body tremendously. She’s worn leg braces and slings, had Botox injected into her leg, and participated in intense “camps” where she learned how to work with her left arm a bit more. When she graduated from pre-school after two years, it was impossible to notice there was an issue unless you had a trained eye.

Because of her “disability”, she was put in special education, but since she has no cognitive or behavioral issues, it was difficult for us to reconcile her placement. Yes, her kindergarten class had 5 children, but like most traditional institutions, they still taught the same old way, and being the mama I am, I know how my baby learns and what type of educational environment she needs. Suffice it to say, she is now in a mainstream program that nurtures the entire child.

I say all that to say that we all thought the worst was behind us. We knew that a pachygyria diagnosis came with the chance of febral seizures and were told that if she didn’t have one by six, then the chances were nil.

After we got into the ambulance, she seemed to become a bit lucid, then once again, she slipped away, foaming at the mouth. Once we arrived at the pediatric ER at SUNY Downstate, she looked dazed and then it happened, her entire body went into convulsions. All 45 pounds of Zee was shaking uncontrollably. The team sprang into action, keeping us abreast every single step of the way. We never had to ask a question; from the moment they intubated her, gave her a form of Valium to stop the seizing, knocked her out to get the CAT scan, we knew what was happening, why and what was going to happen next.

Three hours later, we were in the pediatric ICU; my baby was unconscious, but there was no bleeding in her brain and she hadn’t lost any oxygen. I was praising every God I knew. I was also thankful for the prayers of all my friends, family and extended family who I’d been texting throughout the morning.

Zee remained in ICU until Thursday. Her tubes were removed the next morning and she had an EEG on Wednesday afternoon. She was weak, her voice was super low, she couldn’t stand by herself, but she was determined to leave, as evidenced by her constant lamentations of “I want to go home”. In fact when I told her we couldn’t she looked past me and asked the doctor. She had an MRI, for which she was made unconscious, on Thursday morning and when she was told she could eat, she said she wanted everything!

This entire time, I did not leave the hospital. I sent Spence home to pack some bags, but I refused to leave Zee’s side. I began having flashbacks to when we received her pachygyria diagnosis and thought about how I thought it was all my fault, something I did/did not do, etc. and although I know there was nothing I could do, I still had that mama guilt.

Zee was put in a room in the pediatric ward on Thursday afternoon. One of the nurses gave Zee a bath and we changed her out of the hospital gown into her brightly-colored loungewear. We then made our way down the hall to the education center where Zee flitted around, playing with the giant doll house and then the keyboard. Later that evening, we were told she’d be discharged on Friday and that night, I actually got some rest; in the lounge.

On Friday morning, after breakfast and a visit from the doctor, we took a walk around the ward, got visited by a clown, and hung out in the education center making fabulous Playdough creations. I sent Spence to fill Zee’s prescription for ant-seizure medication and after lunch, I bathed and dressed in street clothes. Because she was now having fun, Zee finally stopped singing about how much she wanted to go home. In fact, she wanted to stay and play.

Once Spence returned, we made our rounds of the ward, thanking the doctors and nurses, as well as the staff of the education center and were gifted with some fabulous books from scholastic and an afghan knitted by the ladies of the Red Hat Society in the Bronx.

On the cab ride home, all I could do is exhale, constantly. I was/am grateful for my baby’s health being restored. We slept for a good 12 hours and Zee started her new, non-special education school on the following Monday. She’s all about her martial arts and violin lessons and reminds us to give her her medicine twice a day.

She’s back to herself, mama, not so much; but I’ll get there.