Disabled. Challenged. Special. All words that we have started to accept and feel comfortable with. We can do this. We can help Cara overcome any physical and mental obstacle. We can help her find a new way of accomplishing anything. If she wanted to climb a mountain we would carry her and she’d do it.
My bedroom swings open shaking me out of a nap. “Call Dan. It’s an emergency!” My mom shuts the door and runs back downstairs where she was playing with Natalie. I grab my cell phone and call Dan at work. Just the sound of his voice make my limbs go numb. He starts to explain that the doctor was able to open the video clip we took of Cara doing some strange startling movements. Okay. She thinks that they are infantile spasms. Okay. Infantile spasms are a type of seizure. Okay. This new development combined with a “vastly abnormal” (cringe) brain has elevated her concern of a possible energy issue. What? She has called Doerenbecher Childrens Hospital at OHSU to try to get Cara a bed. What? For tonight. Wait, wait, how did we get to “have to go to the hospital tonight”? The numbness creeps into my head. I jump in the shower then start to pack a bag for the three of us. Not exactly an emergency but pain and fear tighten their grip nonetheless.
We arrive at OHSU in the early evening. Cara has a room ready. She will get an EEG in the morning. They need to test urine, blood, and spinal fluid (cringe). Urine was easy, just a couple cotton balls in the diaper. Blood was more difficult. Three pokes later and what felt like hours of screaming, they got the blood that they needed. Her eyes red from tears, hand and arm bruised from needles, we settled in for the night. The next morning Cara gets her EEG. Looking at our sleeping daughter with what looks like a hundred wires coming from her head, Dan and I look at each other. How did we get here?
A lumbar puncture is no big deal. Cara won’t even need to be sedated. No big deal?? Are you kidding me??? Even medicated I have never seen Cara so upset. The nurse and Dan worked on holding her down while I focused on dipping the pacifier in sugar water and talking to her. Her entire body was red and she screamed with such vigor that only a high pitch rasp came from her throat. She is 6 months old, 14lbs and it took two people to hold her in place. The procedure is harder on the parents than on the baby. I doubt Cara would agree.
We were told that Cara’s EEG showed that she was not having infantile spasms. I took my first breath in two days. We could go home. Go home without steroid injections we would have to give Cara ourselves. We went home with a small smile and celebrated a small victory.
Cara’s EEG was not entirely normal. She is having seizure activity that is being diagnosed as myoclonic seizures. She is on a very low dose of an anticonvulsant medication. At least it’s not steroids. At least it’s not injections.
“Hello Mrs. Williams. Is this a good time? Do you have a few minutes to talk.” A week after our stay at the hospital Cara’s lab results were in. My palms start to sweat. “I now have a bigger concern that Cara has a metabolic issue going on.” “Metabolic and mitochondrial disorders often times present themselves as an HIE.” Cara has been referred to the neurometabolic team at OHSU. It could be months before we get a diagnosis.
I call Dan after speaking to Cara’s neurologist and relay the information the best I can. “How are you able to tell me this keeping it together?” I have no other choice. Losing it helps no one. Losing it means I can’t be a good mom to my daughters. Losing it means I am giving up.
That evening we stand in our kitchen and just look at each other and shake our heads. How did we get here?
Here we are again. We thought we knew what was wrong and we were ready to move forward. We were comfortable with disabled. Comfortable with “special needs”. Comfortable with a static brain injury. Now we wait for more specialists, more tests and more results. There are hundreds of different types of metabolic disorders. Some with simple treatments. Some fatal. Many debilitating. All have no cure. The numbness flows into my chest.
In a very dark corner of my mind the images of my daughter dying keep trying to float to the forefront. Sometimes they make it. Most of the time I force them back into their corner. They won’t go away but I can’t acknowledge their existance. I can’t accept the possibility of losing my daughter, a part of my family, a part of myself. I can not lose my daughter.
How did we get here?