Almost two weeks have passed since we got the diagnosis. The range of feelings both Johnny and I experienced was a little like cramming all of puberty and adolescence into ten or eleven days. I can't speak for my husband, but as for me, I won't lie to you. The way I felt last week was second only to me at fourteen, miserable, suicidal, lying on the floor of my room in the dark, blaring Pink Floyd's The Wall or the Cure's Pornography, easily two of the most gut- and heart-wrenchingly, agonizingly hopeless records ever written, absolutely certain that the best thing I could do for myself and for the rest of humanity was to end my life. This is the stuff of Sylvia Plath. It's stuff I really never wanted to experience again.
Years ago, I was in a group therapy for a short period of time. We were learning Dialectical Behavior Therapy, or DBT. In one exercise, we were asked to describe the pain we lived with. For me, the word I settled on after much deliberation, was anguish. It still moves me to tears when I think back on that very sad and dark part of my life. I was so unhappy for so long. Anguish is painful, bleak, full of shame and misery and hopelessness. It's rough. I was really hurting.
Those of you who knew me then know that I can really do miserable. Back then it was somewhat comforting, like an old security blanket. But you know, I had no good reason for being so unhappy. I had a home, I had school, a job. Family, friends. Resources, opportunities. I wanted for nothing. I just hated everything. Sadly, the security blanket of miserable gave me a sense of belonging, if you can believe that. It was my identity for far too long. But I've long since shaken that off and developed a more productive sense of purpose and a true love of life. Now, at 39 and with a perfectly good reason to be unhappy, it feels self-indulgent. I'm not going to tell you what Johnny and I talked about. I'm not going to repeat the questions I asked, the what-ifs, the fears I spoke aloud. These are things I never wanted to say and never will say again. This is not radical acceptance. I don't want this and I'm pissed as hell that it landed on us. I am furious that Teeny's life will be affected. I am not done grieving the loss of the parenthood I wanted, and the family I expected. But I am not wasting any more time with what-ifs. As someone I loved many years ago once wrote to me, "That's not my program anymore." After a few days of tears, wallowing in self-pity, and the kinds of conversations parents should never have to have about their children, after a Thanksgiving in which I felt really un-fucking-thankful for this crappy hand we were just dealt, I realized that I was dwelling on stuff that might or might never happen, and I was forgetting the kid in front of me, who was here now, and needed me now. I realized that I needed to focus not so much on the things Teeny may never do but rather the things she's already doing. My heart swelled again with love for this beautiful girl who is a lot more than just a diagnosis, and I remembered my favorite quote, by George Bernard Shaw, that I saw for the first time pinned to the wall in a classroom in the school I used to teach at:
"This is the true joy in life, being used for a purpose recognized by yourself as a mighty one. Being a force of Nature instead of a feverish, selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy. I am of the opinion that my life belongs to the whole community and as long as I live it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die. For the harder I work the more I live. I rejoice in life for its own sake. Life is no brief candle to me. It's a sort of splendid torch which I've got to hold up for the moment and I want to make it burn as brightly as possible before handing on to future generations."
This is the way I live, and it's the way I love. Remembering this, I emerged de profundis, anew. Here's why:
Teeny is there. She's present. That MRI report is terrifying, horrible, scary. But this little girl has shown me a thousand times in the past week alone that she is going to do her best to beat this thing.
What I've learned is that nobody really knows what's going to happen to Teeny. The neurologist would not commit to a prognosis regarding her cognitive abilities. Basically he and my radiologist friend agreed that her success will be largely dependent on her environment - her therapy and her family -- and her own sense of determination. The neurologist told us not to come back for at least three months because there was nothing more he could do until he got a sense of how well she was responding to her services.
So I wanted to make sure she had access to every single service that might help. I did a bunch of research right away. I ordered books like What To Do For Your Brain Injured Child and The Woman Who Changed Her Brain and some others. I found a place in PA that offers week-long seminars for parents of brain injured children that we can't afford to attend. I've been in touch with a neurologist whose lab does extensive research on the cerebellum. I've printed out every scientific article and study I can find on cerebellar function and dysfunction -- and read some of them. I scrutinized Teeny's MRI report and looked up every word I didn't understand. I felt like I was taking a crash course in neurology as there were more words in the report that I didn't understand than words I did, but now I can read it fairly fluently and even I found a mistake in it that up until this point no one had caught! (Now I'm working with the neurologist to have it corrected.) I'm reading as much as I can about neuroplasticity and have learned that even the cerebellum can benefit from it. I'm reading about various therapies that claim to be able to heal brain injuries. I keep reminding myself about the study I read in which rats were given a lot of stimulation in their environment - toys, mazes, light, etc., and the control rats got no stimulation at all. When they were euthanized their brains were weighed and the stimulated rats' brains weighed significantly more than the control rats' brains. People are coming out of the woodwork to share their miraculous neuroplasticity stories. In the introduction of The Woman Who Changed Her Brain, I read about the single thing that people who overcame brain injuries and deficiencies had in common. "Our shared determination... was actually a shared strength in frontal lobe functioning, that part of the brain critical for planning and seeking solutions. A hallmark of good functioing in this region of the brain is driven determination in pursuit of a goal." Determination is one thing that Johnny and I both have in spades, and it seems that while Teeny may have gotten the shaft the day they were handing out cerebellums (cerebella?), she was definitely at the head of the line to get her frontal lobe, whatever that is!
I scrolled farther and farther down in the online support groups I found, reading back over months of posts. I read questions, answers and comments by parents of kids with CH who have varying degrees of recovery. It seems that cerebellar hypoplasia is often accompanied by a whole range of other issues. Fortunately, Teeny appears to have none of them (yet). Among the diagnosed, some never walk or talk. Some can't feed themselves and must wear backpacks to hold (and hide) their feeding tubes. Some have had major eye surgery as babies. Many are autistic. Yet others have learned to walk and talk, have graduated high school and college, have jobs and learned to drive. There's one fellow in particular on there who has cerebellar agenesis (i.e., he was born with no cerebellum whatsoever) who has achieved all of those things. He's incredible, as are the other adults and young adults who post in this group. Their grammar and spelling: perfect. Their awareness of their challenges: dead on. I pored over pictures and videos posted to the group. Do the kids look sick? Can you tell? I got the names of institutes, schools, doctors, therapies, etc., that have helped other CH children. And I created a spreadsheet on my Google drive with all this information and more, and I go through it a little at a time.
Of course I'm getting her checked out for everything I can think of that can accompany CH - she's got appointments coming up with a geneticist and a pediatric ophthalmologist. We are waiting for clearance to see EI's developmental pediatrician. I submitted a request for a speech evaluation, for nutrition services. And so on. You should see my spreadsheet. It's a work of art.
The hardest part so far is what I'm working on now: getting her a Medicaid waiver. Apparently even though we make too much money to qualify for Medicaid, certain disabilities entitle people to it anyway, and once they get it, it covers medical equipment, home modifications, some schooling and programming, additional health care not covered by private insurance, even respite care. But every agency I've come across has a very long waiting list. But we're on them now, and I haven't given up yet.
And life goes on. Bee is having trouble sleeping through the night, which means no one in our house sleeps through the night. Johnny and I have been taking turns sleeping on the floor next to her, which really stinks. Our finances are tighter than ever so we're looking at a pretty bleak holiday season. One of our cats is sick and we can't figure out what's going on. My in-laws experienced significant damage to their home in Hurricane Sandy and we can't help them. Work is very hectic as I prepare to execute a strategic plan that will take my team in a radically different direction. I can barely find the time to get to my own PT appointments, set up through no-fault insurance to ease the neck and shoulder pain I've had since our car accident this summer. Of course as soon as I made it to my first appointment and relaxed into the heating pads nearly four months after the accident, the insurance not-so-kindly set up a series of appointments for me with their own orthopedist, probably thinking they smelled a rat. No rat here -- just someone who took three months to get to an appointment because of all the other crap that's going on. And oh yeah-- I'm still in school. Life is big. Really big. And Starbucks poisoned me again today with a full caf venti Americano instead of decaf, so while I'm grateful that it gave me the energy to stay up and write this entire entry in one sitting, tomorrow is going to be a tough day.
In the meantime, we've had a number of breakthrough moments. Here's a good one. In the last few days, I've taught myself a handful of signs. I read that this could help Teeny communicate, since passive and active speech could be separate and distinct challenges for her. But I felt silly, signing "Mama" and "Daddy" over and over with my thumb on my face and my four fingers extended like a turkey. Harder was the sign for sister - could I really expect her to copy that? I was doubtful as I signed "diaper" and "milk". But then this weekend over dinner, when I said and signed "more" and every time I did, I offered her another bite of tofu or brown rice pasta. Suddenly she brought her hands together. She watched me intently, and copied what I did. She had trouble pointing her fingers together instead of bringing her palms together in a clap, but she got it. And although she can feed herself perfectly well, she opened her mouth and waited for more. Success! I felt not unlike Anne Sullivan, Helen Keller's teacher, when she finally made her understand that the fingering into one palm and the cool sensation she felt in the other meant water. And I wasted no time in stuffing more pieces of tofu in that little open mouth. She's the healthiest eater in the family now. Too young to be picky, she'll try anything, and I take full advantage and feed her lots of "brain foods," lots of omega 3s, proteins, vitamin Bs, antioxidants. And I nurse her as much as I can. Because I'm at work during the day, this means I nurse all night. She wakes up 3 or more times at night, wanting milk. Most nights I end up bringing her into bed with me because after the third or fourth time I'm too tired to sit in the glider with her. But she is finally building tone in her arms so she hugs and clings to me now, and cuddles when we co-sleep. I know my breast milk is exactly what she needs to get proper nutrition, and I can't help but think that these opportunities for quiet mama snuggle time are helpful for her development too.
She started PT and OT last week. After the second PT session, the therapist said "Oh yeah. She's gonna walk."
In the first OT session, that therapist told me to look into Special Instruction for her. My heart sank, but I added it to the spreadsheet. Then after the second session, she changed her mind and said she probably wouldn't qualify for it. (We're collecting documentation for it anyway.) "I think she's okay cognitively," she said. "And," she added, "she's really very cute, too." She brings toys with her, and all kinds of tools and practical suggestions to make things easier for us at home.
In the past week, Teeny has gotten two teeth and seems to be getting another still. Both Johnny and my mother insist she's gotten much heavier. Always very underweight and small for her age, at 14 months old she wears size 12 -18 months in some clothes, 18 - 24 in others. She's sitting by herself and is working up to a high kneel. Yesterday the OT talked about us setting up a place for her to pull herself up to a stand safely, believing fully that it's right around the corner. She's curious and exploratory. She putters around the apartment and we find her, much as we did her sister when she was eight or nine months old, in the cat food, under the dining room table, rooting around in a basket of toys, pulling herself up by holding onto a chair or onto my leg. She made her way into the kitchen last night when I was cooking dinner and discovered Bee's animal magnets on the fridge. I have a whole series of adorable pictures of that and of her pulling out every single tissue in an entire box, but alas I have no storage left for pictures on this blog!
She now loves the iPad and fights Bee for it. She points at Grover in the The Monster at the End of This Book app, and screeches with delight at the many toddler apps that Bee played with and has since outgrown. Best of all, she now copies her sister. Obsessed with learning to write, Bee makes "shopping lists" every day. Teeny made one too:
And she is trying her darndest to talk. Her first and clearest word is "up." She also definitely says "da-da" -- meaningfully now -- referring to both Johnny and me. And she says, more or less clearly, "cat."
I reconnected with an old, old friend recently. Her son has special needs as well, and I sat down with her to talk about her experiences and to learn more about how the system works in New York. We talked for two and a half hours. As we put our coats on and headed out into the first really cold day of the year, she stopped me. "What are you and Johnny doing to take care of yourselves?" I had to think about that. Johnny was home now, I said, playing Zelda on his WiiU. He needed a break this afternoon so I brought the girls to my mom's. "But what about you?" she asked again. I didn't have a great answer.
But that's not the end of that story. I don't want to talk about it at work. To be clear, I don't mind talking about it with my coworkers, but when I'm at work, I want to focus on work. So I get to escape to my beloved job most days and not talk about cerebellar hypoplasia at all with anyone. I need that. One of my BFFs took me out for a mani-pedi today. I loved the hour of pampering, just sitting next to her and catching up like normal people. One colleague offered to have our apartment cleaned, and another sent me a gift certificate for a pedicure. Relatives who live eight hours away made time in their holiday schedule to visit and love on the girls. On Sunday morning I went for the first run I've gone on in two weeks, cheered on my my new virtual running pal. Yesterday I went to sleep at 8 pm. My mom has come through numerous times to give us badly needed breaks, or to be on Bee duty while we take Teeny to yet another scary appointment. Johnny gives me impromptu massages and takes great pains to keep the house clean. Tonight he cooked dinner while I put Teeny to bed. Friends, family and colleagues have reached out to offer to help in whatever ways they can, and to let me know they read the blog and that they care. Some of you I haven't even had a chance to get back to, but I will. I am very fortunate to have the people in my life that I do. Seriously, people. I love you. You know who you are.
Suddenly it feels like we have two kids in the house again. Two active, bright and healthy kids, and two bright-eyed and involved parents. This is the way it was supposed to be. So what if we have a long road ahead. It's not, as Johnny and I like to joke, all puppies and rainbows. Nothing's easy in life, and Johnny and I both have overcome huge obstacles to be the parents -- hell, to be the people -- we are today, so we know this first hand. I know there are no simple answers to Teeny's problems. In fact, for now there are no answers at all, and that's the hardest part. But even though we didn't sign up for this and we'd trade it away in a heartbeat, we're up for this challenge. We are determined. And clearly, so is she.
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