Today we had our ECI consultation for KayTar. Basically, we signed a lot of paperwork and set up a lot of appointments. She has three evaluations (speech, physical, nutritional) scheduled for September, with a fourth (sensory) to be scheduled soon, as well as her neurologist appointment, MRI, and well baby visit. Two months ago, I thought everything was okay. I had some concerns about KayTar's development, which is one of the reasons we switched pediatricians, but I had no idea the depth of the problems we were facing. Her pediatrician had never voiced a single about her development, in the year and four months we had been seeing him. I noticed things here and there that weren't quite right, but because he never mentioned it, I assumed I was being "that mom"...the mom who worries about everything when there is nothing to worry about, the mom who should have the parental controls set to keep her from Googling anything and everything under the sun that could be wrong with her child. When we went to our first appointment with the new pediatrician, she noticed all of the things I was concerned about within ten minutes of being with KayTar. We treated the ongoing constipation she had been experiencing, and set up a second appointment to discuss the delays.
KayTar is eighteen months old. She is still on an all baby food diet, because she cannot tolerate anything thicker than a Stage 2. She loves to "eat" things like crackers or cookies, but she spits out all the pieces. If a piece sneaks by her, she gags and throws up. She cannot even tolerate table foods like mashed potatoes. She is not walking or standing independently. She only started crawling on her hands and knees in the last month. She is currently only saying two words, "Go." and "Sit." She had more words in her vocabulary, but has lost them. She used to say things like "Mama." "Dada." "Bubba." "Dog." "Diaper." but she doesn't anymore. She has just recently learned to play with a few of her toys appropriately, things like her Dino Ball Drop and her stacking rings, instead of just mouthing the pieces or banging them together. She cannot follow commands, ie. "KayTar, come here." or "Roll me the ball, KayTar!" She is still very much an infant in a toddler's body.
On top of the developmental delays, she has begun having seizure-like episodes. She had her first one in May, and we were unsure of what was happening. Her previous pediatrician tested for meningitis, which came back negative, and never followed up. About a month ago she had a second episode, and then a third, two weeks after the second one. They seem to be progressing.
When I walked into that second appointment with the new pediatrician , my whole world changed. There was so much information to absorb that it just wasn't possible...for days after, I kept waking in my sleep, remembering bits and pieces of what she had said. "The delays are significant and we have to find the answer." At this point we are still waiting. We have had blood work taken and results returned. It is not chromosomal or metabolic. We had an EEG while we were in the ER for her third episode. It came back abnormal. I asked our pediatrician what our possibilities were at this point, and she said physical problems with the brain. It could be a structural defect, perhaps something didn't develop right prenatally, or it could be a tumor. We don't know. If the MRI is inconclusive, we still won't have an answer. September will be a long month.
After that appointment, I quit my job. I am now a stay at home mother, or rather, KayTar's administrative assistant. I keep her calendar and a notebook filled with contact names and phone numbers, along with appointment locations, instructions, and times. I am here to spend all the time I can with KayTar, and my older son, BubTar, and to keep things as normal as I can for both of them. Its amazing how one moment can change the entire course of your life. I can handle it changing my life, but I don't want it to change the lives of my kids. They deserve to enjoy their childhood and not have to worry about big things like this. I am thankful that this experience has taught me how to live in the moment. I don't spend my days fretting over the future, about things I can't control. I spend my days loving these kids and soaking up every moment and memory I can with them, because in the end that is all that really matters.
Two years ago, I started this blog with those words. Two years ago, my life as I knew it previously; my two healthy, typical kids, my full time job, our two incomes, our plans for the future, had suddenly been ripped away. I was alone in an unrecognizable world, silenced by my fears. I was full of words that I couldn't bring myself to speak aloud, and so I wrote them instead. And I've continued to write them, daily or weekly, ever since. This is where I pluck worries from the weighty trees of my mind, studying each one intently and describing it to the best of my ability. One I've felt the weight of it in my hands and detailed every inch of it, I drop it into the basket. Processed. The trees are ever lighter for it, the branches suddenly unburdened, free to stretch towards the sun once again. And you, you all, are the basket, delicately catching the burdens I discard, cradling each one gently, forever a soft landing. The trees willingly relinquish their fruits, knowing that loving hands and a warm reception awaits.
When I read through that first post again, my heart was instantly in my throat. I remember that quiet anguish, those gnawing fears. I remember all the things I didn't know, things that are so clear in hindsight. I reread the list of words she had lost and gained, and think, "She lost those, too." and in the next instant I think, "But she has gained the world." I read about the episodes, all three of them, and want to stroke my hair from my own slightly younger forehead and say, "Oh, baby girl. You don't even know. There are more to come, so many more, but you'll get through it, you and she. They don't get any easier, but you'll carry her through." I read about the concerns about her wee brain and I want to scream, "It isn't a tumor!" so it can stop eating me up inside, and whisper, "But it is something." so I'm not blindsided. I want to go back and hold my own hand, carry myself through, whispering hope and calm into my own very frightened heart, sharing the knowledge and wisdom I've gained.
Then, KayTar was a mystery, the pediatrician was the unknown hero, and there were so many questions without answer. Now, KayTar still has a bit of mystery about her, though not so much in the ways that really matter. The pediatrician is no longer unknown, although she is still our hero, consistently providing KayTar with the best possible care and always willing to go above and beyond for us. There are still many questions without answers, but we've learned a lot along the way. I still worry about how things affect BubTar, like when we had to leave his birthday celebration because KayTar had an episode, how he apologized, how he was afraid to go back to the museum because he didn't want to make her very sick again, but I know we're doing the best we can with this, that most days our lives are pretty normal.
I don't look through my own archives very often, unless I'm searching for something specific. It is a little uncomfortable to reread my own words, instantly transported back to the fear or worry or pain of a particular moment, to stare back at a giant I've since overcome, still feeling every bit as small as I did the first time I faced it. Even though I don't read through it often, I am so pleased to have these words and moments recorded to remind me of where we've been, how it felt, what we've overcome and gained. There are moments of great joy stored here, her first signs, her first words, her first steps. There are dark moments here, too, moments filled with worrying about my sweet girl and her mortality, trips to the hospital, tests and results, the records of nearly every episode she's ever had. There are mundane moments, too, the universal moments of motherhood we all seem to share, lost teeth, sleepless nights, the hilarity of small children. Every bit of it coming together to tell the story of us, the story of her, the journey of our becoming.