Start Spreadin' The News... Part Two

Teeny had two very big appointments last November. The first appointment was with a neurologist at Harvard and Mass General who specializes in cerebellar dysfunction. It took me two and a half years to get this appointment. Back in 2012, post-MRI, I read a bunch of medical articles about cerebellar hypoplasia and saw his name listed as author over and over. I felt like he might help us understand how Teeny learns, since his research led efforts to prove that the cerebellum does more than control motor function. He believes that it plays a role in learning and cognition. This doctor is mostly a researcher who rarely sees patients and even more rarely sees pediatric patients, but I felt that if I could just get him to look at her MRI, he would be interested. So I called and I emailed and I called more and I emailed more and I was on the verge of giving up when I heard an interview with him on NPR here, and this part was like saying Teeny's name:

"Research .... supports the idea that the cerebellum really has just one job: It takes clumsy actions or functions and makes them more refined. "It doesn't make things. It makes things better," Schmahmann says. That's pretty straightforward when it comes to movement. The brain's motor cortex tells your legs to start walking. The cerebellum keeps your stride smooth and steady and balanced. "What we now understand is what that cerebellum is doing to movement, it's also doing to intellect and personality and emotional processing." 

This re-ignited my spark, so I started calling and emailing again... and finally, finally, we got an appointment. This is really great news, right? YES. And it was also terrifying. Johnny was worried that he would tell us that we caused this, that we were somehow too rough with her and hurt her brain. A tiny part of me heard the naysayers in my head saying that her homebirth was what caused it, even though I knew better. Deep down I was worried that he would tell us he doesn't know what caused it or how we can help her. I didn't share Johnny's worry because I know we didn't cause it, and he didn't share my worry because he knows that with everything we do with her and for her, we are helping her already. So we had to agree to set aside our worries and just show up with an open mind and hear whatever he had to say. 

And what he said was that Teeny has genetically caused pontocerebellar hypoplasia.

Do not Google this unless you are prepared to see something horrible. The bad news is that PCH is devastating. It's rare. It's often fatal, often in infancy. The good news, if there can be good news when your child has PCH, is that this doctor believes that she has a new variant, and that this new variant is not neurodegenerative but rather neurodevelopmental. That is fancy for the fact that when Teeny learns a skill, she keeps it. She is more capable than she was at birth, where most kiddos with PCH by contrast lose abilities as time goes on. He said there is no question about her diagnosis from her scans but that she has more to teach us all because while she and PCH2A kids (kids with the most well studied variant) have some symptoms in common, such as being small and borderline (or not so borderline) microcephalic, being very sleepy as newborns and hard to rouse, having issues with tone. But where most PCH2A kids have terrible seizures, difficulty with talking and walking, and none of them eat on their own, Teeny is completely different. He was very, very surprised at her abilities. But he didn't really know what to make of what he saw. In short, after three hours of testing and discussion, we left feeling confused. We got a lot of information but none of it actually changes anything. Now we know there is so much to do, but there is nothing to do. We are doing everything right, but there is no cure. There is no way to know how she will do, since most of the children who have gone before her have already died. He said that just by looking at her scans and at the exact areas of damage to her cerebellum, he could predict some areas of strength and some of weakness. He said she could start to seize anytime. But he also said that it was his firm belief that he could prove this was autosomal (genetic) and recessive. He felt Teeny's story has not yet been written, and I asked him if he would be the one to write it. He said yes! I asked him if that meant he would be her new neurologist and he said he would be delighted. We have a lot to learn from him and my hope is that he feels he and medicine in general have a lot to learn from her. 

So great, now we know that I didn't cause it and Johnny didn't cause it but in reality, we both caused it because apparently we are both carriers of this terrible thing. How can that be? PCH is so rare that there are maybe 100 cases worldwide, yet he -- this person I really believe is as close to a soulmate as one can possibly have -- and I -- this adoptee with a hodgepodge of unknown genetics --  came together and made this happen? That is too much for me to wrap my head around, so we'll just leave it there for now.

Her second appointment was for a neuropsychological evaluation, which was done the following day by a colleague of the neurologist also at Mass General. We decided to do this to help us understand how she learns and what her potential could be. Schools like these evaluations to help make their admissions decisions because the test evaluates school readiness and, somehow, cognitive potential. It also makes recommendations for educational settings and related services. This test is a very big deal and usually a very expensive deal. When we had it scheduled in New York, we were quoted upwards of $6,000 and no one took insurance. But because this one was set up in conjunction with the neurology testing and because this particular neuropsychologist happened to be in my network, we paid nothing. Not even a co-pay.

The neuropsychologist and her assistants completed the testing in a few hours; it resulted in fourteen pages of confusing scores, recommendations and other details. The document does not do my daughter justice. She is so much more than scores and observations and a litany of things she cannot do and a short list of things she can. And at the same time, the neuropsychologist and those who worked with her that day did have some insights into her abilities and her potential. As much as I hate to admit it, the document does in some way describe her. The bottom line is twofold: one, PCH is so rare and strange that her strengths and weaknesses are a little all over the place (so, for example, she tests very high for "school readiness" but very low on visual spatial skills) so her scores are essentially meaningless because their pattern is that they have no pattern, and two, because of her strong social, emotional and verbal aptitudes, there is no better setting for her than an integrated, supportive classroom.

Which is exactly what we knew all along.

Motherlode article!

Hey, y'all! My latest blog post is in the Motherlode blog of The New York Times!

Gene Genie

This week Teeny had her long-awaited appointment with a geneticist.

We'd made the appointment right after her MRI, and at that time it was just another thing we were supposed to do to rule out something very scary. Every step of this whole horrible journey has been suggested to us to rule something out and with every test and every report and every exam, she ends up testing positive for something no one thought she had in the first place, which really, really sucks. Needless to say, I was not especially looking forward to this visit.

Children's hospitals try so hard to be cheery but despite the bright colors, teddy bears, and balloons, they are torture for everyone. The parents dread being there because it's the last place anyone wants to take their child. And the siblings think they're at a party for every other kid in the world but them. I walked in with lead feet and a heavy heart because this was the place where Teeny had her MRI. It was the very Omphalos of bad news. I never wanted to come here in the first place, yet here I was, going back for more. Bee, on the other hand, saw all the sorry attempts at cheerfulness and was excited by it all - and jealous. We walked past the sad hospital shop where plush dolls, games, and kids' clothing were for sale. "I wanna go in there, Mama," she demanded. When I ignored this request, she raced up the ramp, happily checking out the colorful murals and paintings. Then she stopped at the desk where we had to sign in and pointed at the floral arrangements and mylar balloons shaped like Mickey Mouse awaiting delivery to patients. "I want one, Mama," she said again and again. I explained that they were for the kids in the hospital, but, too young to be more than fleetingly empathetic, she was just envious. 

We checked in and the security guards handed us our guest passes. Passes? I remembered my club days, full of guest lists, passes and wristbands. They meant excitement and fun. Who wants a free pass to a children's hospital? This is a party you couldn't pay me to crash if I didn't absolutely have to. I tucked the bizarrely pink papers into my coat pocket and tried to remember where he said we had to go. 

All the way down the hall and then right, walk straight and take a left at the north elevators, but don't forget to stop in the billing office, the last door on the right. We stopped there to register and sign away our lives and our paltry savings. The walls were painted with rainbows and the chairs, each a different color, looked like a box of crayons all lined up one next to the other. There was a huge tank in there full of big, active fish. Our girls were mesmerized, so we were able to fill out paperwork, photocopy insurance cards, and pay co-payments, all without a peep of protest. 

We continued on and our surroundings got less and less happy, less and less vibrant. By the time we made it to the central elevators, the paint was peeling from the ceiling and the floor looked like cheap linoleum. Up seven flights and down another hall and then into a stuffy waiting room with more linoleum, dirty chairs and a TV/VCR setup that was so old we couldn't even work it. It reminded me of an old insane asylum, like the one in One Flew Over The Cuckoo's Nest. We took off our coats, cracked a window and waited. All the coaching I did with Bee about picking out special toys to keep her busy was for naught: the iPad sat in my bag. She wanted nothing to do with it or anything else we'd packed. Teeny was fussy too; I tried to nurse her but she was wriggly and bitey so I put her down to crawl on the floor. I looked around at the dingy room. No toys. No posters, no murals, nothing. I couldn't help but think about how we keep ending up in these crappy, unrenovated wings of very fancy hospitals. As I sat there, I developed a theory that other, more common health concerns get the face lifts, the paint jobs, and the new furniture first. This particular hospital complex clearly threw less time, money, and effort into the offices for the rarer diseases. This waiting area was as depressing as the one at our neurologist's office. I was not impressed.

The genetic counselor was very thorough. She wrote down a lot of information and sketched out a family tree with a plastic tool that had different shapes cut out in it. Squares, diamonds, circles all indicated different ways people in our families were related and scribbles under them were shorthand for any of the health issues we relayed to her. Soon she had woven an elaborate web of shapes and notes two pages wide, yet our information felt woefully incomplete. I was adopted and my birth mother was adopted as well, so I know next to nothing about my genetic makeup. My husband's birth father passed away when he was much younger; his siblings have a different biological father. There a lot of unknowns for both of us. Still, we both knew enough to say emphatically that neither of us has or had anything like cerebellar hypoplasia in our genetic makeup.

After what felt like forever, we saw the doctor. Both kids were hot and tired and cranky by this point, but he was in no hurry. He talked for a long, long time, slowly and in a hazy monotone. After a while it took tremendous effort to listen because my inner adolescent heard nothing but Bueller... Bueller... Bueller while my outer mama was being used like a jungle gym with two overtired and undernapped kiddos clinging to me for dear life. 

It's a good thing I'm pretty well read about our situation because, nice as he was, it was hard to listen to this guy. When I am not fully engaged in a conversation I'm having, I start to notice quirks in people's speech,  grammatical errors, tics, or phrases they say over and over. I get so caught up that I barely absorb a word they say. This guy was a big fan of "Let me put it this way," and "Let me just say this." With the unbearable heat and the squealing children, I found myself counting those phrases before I handed Bee to Johnny and suggested they go investigate the vending machines downstairs. I jerked myself awake and attentive again. Luckily he hadn't said much I didn't already know, so I was able to be as tuned out as I was and still follow the conversation and ask relevant questions.  And it's a really good thing that I am practicing patience and acceptance around this whole issue too, because what I did glean from the geneticist is that he has no idea what's going on with Teeny. Just like everyone else. 

This is what I understand right now, in layman's terms: Hypoplasia means an organ is under-formed or underdeveloped, so cerebellar hypoplasia means a small, underdeveloped cerebellum. Teeny also has a short pons, so technically she has pontocerebellar hypoplasia. Cerebellar hypoplasia (CH) is also the name of a genetic disorder, the primary symptom of which is a small cerebellum. This neurological impairment seems to be far more severe than what Teeny has.  Pontocerebellar hypoplasia (PCH) is the name of a genetic disorder that is so grave, so truly terrifying that I don't even want to type anything about it here. Go ahead and Google it if you are curious, and read about the six or seven different types. They are all horrific and, ultimately, fatal in infancy or early childhood. Both CH and PCH are accompanied by a wide variety of other issues, essentially none of which we see in Teeny at all. Its possible that she has a (relatively) mild case of one or the other. But while no one wants to commit to anything without doing more testing, I get the sense that it's probably neither CH nor PCH.

Which is a good thing. If it's not genetic, it was caused by some static event, or "insult" as the geneticist called it. Everyone seems to agree that whatever it was happened in utero, mainly because I knew from the moment she was born that she was different. So then, what was it? The MRI does not show evidence of a stroke. If it's not genetic and it's not a stroke, there is a range of other possible causes for this insult, but it's not likely that we will ever know. But it doesn't really matter. What matters is that a static event, whatever its nature or origin, means nothing is changing, and that whatever Teeny has is not progressive or degenerative. Because of the brain's incredible plasticity, it means she has a chance at a full recovery. We don't know how likely or unlikely that would be, but it's possible. So obviously this is the least horrible scenario, and the only way we can be sure this scenario is ours is to do the extensive genetic testing that rules everything else out.

We have one team of doctors who think it is a static event but want to do the CH/PCH panel just to be sure. We have another team who thinks it *is* something genetic but not CH or PCH, rather something related to something very obscure and complicated that I don't really understand. If it's the former, as I said, the prognosis could be positive. Should it be the latter, I have no idea what we'd be looking at.  But of course I want to know whatever is knowable. Who wouldn't? 

The counselor and the doctor said we had a lot of options, so we agreed to do all the genetic testing possible. I consented to having Teeny's blood drawn, knowing that she is not always an easy patient. We made our way back to the happier part of the hospital, counted brightly lit moons and stars on the elevator ceiling, and then stopped for a few minutes at the four-foot copper apple made entirely of pennies. Climbing on and around it seemed to recharge the girls' batteries. But moments later we were at the mercy of the phlebotomist, who looked less than thrilled to see us. And Teeny protested loudly, but she was brave. We were all very glad that we got to go home after that.

All done!

The counselor called me a day later. I was home with Teeny in the middle of a PT session but I picked up anxiously. She told me to get a pen and then said that everything we wanted to do all together at one particular lab would be more than ten thousand dollars. I could feel myself turn pale and I almost dropped the phone. The CH/PCH panel and one of the others we wanted to do are both apparently some kind of insurance exception, she explained. This particular lab is notorious, she said, and it doesn't even bother to bill insurance for these panels because they won't pay out enough to make it worth their while. There were other options, she assured me, and she was going to do some more research on some alternate panels and different labs and she'd get back to me. In the meantime, she said, she wanted us to come back on Monday for another blood draw, to do yet a different and more basic panel on Teeny's chromosomes that might indicate problems. This one would be covered for sure. I acquiesced and hung up the phone.

I was stunned. Ten thousand dollars? And $3,975 just for the CH/PCH panel - the most crucial one. Are they kidding? I always pitied the parents who had to hold fundraisers for their kids' health issues but this is the first time I've been faced with a bill like this myself. What are these labs and hospitals thinking? Don't they know how difficult this is for the families involved even without adding this insult to injury? What about the fact that we are a one-income family? Don't they know that I have private preschool tuition to come up with? A mortgage to pay? Get in line, I said in my head. 

As I relayed this new development to Johnny, I wasn't sure how upset to be. Bottom line, if the genetic counselor can't find us an alternate, the testing is going to be cost-prohibitive. And that is what it is. Of course this kind of information will be helpful in determining a course of action. If we're talking about PCH, it could be life or death. It's very serious stuff. But I don't know. If we have to, we will find a way to make the testing happen with or without the help of insurance.

In the meantime, it got me thinking about genetics and how in this area, my life has been one giant question mark. So when I learned about a website that for $99 offers genetic testing via a mail-order spit kit, I signed myself up. A pal of mine did it recently and learned a lot about his ancestry and various medical predispositions. Who knows what it will uncover about me. Am I really Jewish? WillI die of a stroke at an early age like my mother? And maybe, just maybe, it will show some addition or deletion in a gene that might be in some way connected to neurological impairment. I doubt it, but you never know. For 40 years I've been in the dark, so I'm curious -- and a little scared -- to see what light will be shed.

And what if I ordered another spit kit... for Teeny? 

Life Goes On

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.