Monday, November 19, 2012

And Now The Struggle Has A Name**

**(Hat tip to the Tragically Hip, some band I've never heard of, for having a song with that title. I found it on Google and didn't even bother listening to the song. I hope it's a good one and if it's not, don't tell me.)

It's amazing how accurate a mother's intuition can be. It's truly remarkable how I, generally crappy at reading people, picking up on clues and hints, oblivious to subtleties, have been right about every single thing so far when it comes to Teeny. I just know. And now I am getting used to writing blog entries that no mother ever wants to write. I am getting used to being able to trust my intuition about it all. But I'll level with you. I've been pretty smart all my life. I've been a doer, a fixer, a getter of As, recognition, promotion. My hard work always pays off. I see a problem, I solve it. There's always a way. So what am I supposed to do when a problem lands in my lap that I cannot fix?

A month ago we had Teeny's Big Scary Meeting with the representative from Early Intervention. The folks from our agency who were there with us called her the EIOD. I forget what that stands for, but basically she was a tiny woman buried under laptops and papers and lots of red tape, who looked doubtfully at our beautiful and happy daughter as we all took turns describing her issues. Teeny cooed at her as she tried happily to eat our service coordinator's pendant. The woman smiled at her from under her paperwork and offered us the bare minimum in services. We all stood up and cried out in protest. But no! What do you mean? Look at her. She can't crawl correctly. She falls when she's up on all fours. She can't sit up. She can't talk. Okay, okay, the woman agreed. Twice a week PT and twice a week OT. What about speech? I demanded. Too soon, she said without even looking up. I want to state for the record, I said, having no idea if there even was a record being recorded, that I think she will need speech. I don't want to wait until this contract is up to begin that process, so I want it documented now in case we need to revisit before the contract runs its course. She nodded, but offered nothing. We're seeing a neurologist, I added. Her ears perked up. Do you have any documentation? Not yet, I said. He requested an MRI but we haven't done it yet. Well, get me something from the neurologist and then we can talk, she said. She looked away, closed her laptop and started shuffling papers. And then the meeting was over. 

I felt almost exhilarated. I had advocated for my kid! By pushing back, I got her twice the services the EIOD offered initially. It felt like an exercise in negotiation. I was reminded, somewhat absurdly, of the negotiations we had to practice in my Organizational Behavior class over the summer, and interrupted myself by saying but this is her life we're talking about. Did I say that out loud? How could one push back make such a difference in a child's life? I will never know.

So I thought that was it, we were in and we would start the next day. But then the agency couldn't find anyone who was willing to go to Harlem. So they "contracted us out" to another agency, who basically did nothing but send us a magnetic calendar with their logo in the mail. No one called us. Then the hurricane happened and I had to grit my teeth and acknowledge with an admittedly forced feeling of compassion that no one was going to get back to me for at least another week while they dealt with the outfall. I watched my phone like a hawk, eyeing it for numbers I didn't recognize. Normally those are calls I avoid, but now I was grabbing my phone no matter where I was or what I was doing, and shouting "HellothisisAimee" breathlessly, fumbling not to hit the touch screen and accidentally mute myself as I tried to plug in a headset while I was walking to the subway or in the middle of a work meeting. An OT finally called me and offered us a 7 am slot. I asked for the opportunity to discuss with my Not A Morning Person husband, who agreed. But by the time I called the OT back 12 hours after we spoke for the first time, he had already had the case reassigned. Bastard. A few days later I got a call from a PT who barely spoke English. Now, I'm not a speak-English-or-go-home person by any stretch of the imagination. In fact I like to pretend that I speak a number of languages as fluently as I did when I was living and traveling all over Europe and acting like I was German or French or Icelandic, but the truth is, I can't anymore. I envy Europeans and Scandinavians in particular for being just naturally trilingual or more. But this guy had such a heavy accent of some kind or other that I was instantly furious at him and I hated him, absolutely certain that he would be of no help whatsoever to my kid if we couldn't understand him. I gave him a chance anyway and set an appointment for a few days later. Twenty minutes after the time he was supposed to arrive, my blood was boiling and Teeny couldn't hold out another second. She conked out for a nap and I was left to watch the phone. At which point he called to say he was on his way. I told him to forget it. Almost as soon as I hung up, the replacement OT called me - twelve days after the first one told me the case had been reassigned to her. I asked her where she had been. Well, she said, you know.. the hurricane. I couldn't get into the city. I asked her somewhat obnoxiously if her phone had stopped working. She said no. And I said goodbye. And wondered if I had just burned my last bridge. How the f**k I was going to pull a PT and an OT both willing to come to Harlem for my kid during times that worked for our crazy schedule out of thin air?

Luckily my high school connection saved me again. A friend and classmate of mine told me her stepmother was an OT and might be able to refer me to someone. With one email she put us in touch and with another, I suddenly had an OT and a PT who knew each other (and actually lived in the same building!) willing to come to our house. They both called me early last week and my poor service coordinator, helpless except to process endless paperwork to arrange things as I directed her to, filed the changes with the EIOD. Services should finally be starting tomorrow, Monday.

All of this kept me very busy, so busy that the date of the MRI that our neurologist asked us to schedule snuck up on me. It was last Tuesday, the 13th. By the week before, I was not sleeping. My stomach was upset, I was nauseated and afraid that I was getting sick like I had been earlier this year with my Mystery GI Illness that vanished just as suddenly as it appeared nine months prior. No. I was just stressed. When I relayed my symptoms to Johnny, talking to him through the bathroom door, I realized he was right there too. Nervous stomach. Anxiety. The jitters. Sleeplessness. This stuff is visceral when it comes to worrying about your children. It's not the same as the sweaty palms or tight chest you get when you're nervous about a job interview or a blind date. This is fear that's as primal as childbirth. It really hurts.

An MRI really sucks when you're a baby because you have to be sedated. And before that, you have to be fasted. So there you are, awake in the middle of the night and you want your mama's milk but you can't have it even though she's right there and you know she's got plenty. So you're cranky and hungry and thirsty and you don't sleep. And mama doesn't sleep so she's not as sweet and cuddly as you're used to and you just don't know what's going on. And then you have to go somewhere that smells funny and a bunch of people you don't know pick you up and poke you and prod you and stick things around your head and on your arms and on your fingers and toes and then in your veins and you are basically bundled up into a baby burrito and strapped down so you can't hurt yourself or anyone else and then your mama is asked to leave and she's crying and you're screaming and it's awful.





They told me she woke up and needed more pentobarbital twice.

And to add insult to injury, while your kid is in the scanner and you can't be there and you're in the waiting room of a children's hospital, truly the Saddest Place On Earth, with a bunch of moms whose kids are so sick, much sicker than you think your kid is, the ladies you want to kick because they call you "Mom" instead of "Aimee" come to you and tell you there's a problem with your insurance so you call them and you get an automated response and you're screaming "representative! representative!" and everyone is looking at you and they come on the phone only tell you you're out of network and would you like a list of covered hospitals and you're saying but she's in the scanner now and at the same time you're trying to calculate what a bill for an MRI could possibly look like and how you are going to pay that and then the nurses are calling you because she's awake and you hang up on the representative and go into recovery and there's your baby girl, all wired up with IVs and pulse oxes and all kinds of technology, and she barely recognizes you because she's high as a kite. The nurses are only too happy to hand her off to "Mom" and they forget to offer your husband a seat and so you're sitting and he's alternating crouching and leaning against the horrible hospital crib and you're shifting the weight of a groggy baby from one hip to another, and you turn off the garbage TV they turned on that you're watching but Teeny isn't. You send your husband off to get copies of the scans and you wait, one minute at a time, for them to tell you you can leave. You snap a zillion pictures to keep your hands busy, while the nurses give you funny looks, musing all the while to yourself about how cute it will be when this is over and you write a blog entry about this experience and how lucky you are that it was all for nothing. And all you can think about is getting away from the people who call you "Mom" and toward your next cup of coffee.






So you get your coffee and you go home believing the worst is behind you, updating Facebook with a picture of Teeny asleep on your chest and a caption saying "We survived!" After all, the neurologist suggested the MRI just to rule things out. You feel like you went through this terrible, awful, no-good exercise because you had to do it to prove that your kid is fine, that there's nothing serious going on. You realize you've missed some work and you cram the rest of your week full of meetings, before and after the follow-up to the neurologist that you tell yourself is just a formality.




It doesn't even occur to you that there could be more to this story until you are sitting, two days later, in the stuffy waiting room at Columbia University Medical Center's pediatric neurology department, waiting. And waiting. You hate being here because there are so many sick kids, and your kid is not like that. Yet some part of you knows this is not going to be just a kaffeeklatsch. You haven't slept, you are so stressed that you want to eat the whole house but your stomach is so sick that you can't eat a bite, you are breaking out like a teenager. You reach over and pluck a grey hair off your husband's head. He is seven years younger than you and has never had a grey hair before. The receptionist tells you that the doctor is just reviewing your case and will be with you soon. And you wait. And then you see him our of your peripheral vision, file in hand, and he doesn't meet your eyes. Suddenly you get it. You turn to your husband and ask, "What if this is really bad?" He swallows hard and looks away. You get up and busy yourself with a diaper change, and then your name is called.

And all at once, life would never be the same again.

Neurologists are not known for their way with clients and patients. This one is pretty nice though. Everyone told me he would scare us by making us do a battery of tests to cover his butt, that the tests would all be negative, that the neurologist would make us rule things out one at a time so that if he said she was fine, we wouldn't sue later if she ended up having some minor thing. And that in the end, she'd be fine and this would be just a scare. But this is not how it played out.

What happened instead is that he sat us down in the same exam room we met him in a month before and he fumbled his words. As soon as he did, I knew something bad was coming. He said he preferred to just show us the scans so we could see for ourselves. He pulled up one scan of Teeny's brain after the other on his monitor, and he pointed to a dark place deep in the center that wasn't supposed to be dark. He explained that for some reason, one that we would likely never know or understand, Teeny's cerebellum is not fully developed and her pons is too short. This explains all the delays she has with motor skills, because the cerebellum controls all of that. It could and probably does control a lot more too, according to new research, but we just don't know exactly what. He read off some very scary sounding language from a report he had from the neuroradiologist who looked at her images and told us the good news too: that her cerebrum and the rest of her brain looked fine. He told us that this was a non-traumatic injury, probably related to an infection or an inflammation at some point before or after her birth, and that we might want to consult with a geneticist if we chose, but that he was sure it was not genetic. He kept talking, pointing to grey matter and white matter and myelin and all kinds of words that made me think of ninth grade biology and I felt suddenly very small and very far away. I felt an odd indignant feeling, like he shouldn't be talking this way in front of Teeny, who bounced happily on my lap while these terrible words swirled around the hot and stuffy room. At the same time I almost felt bad for him for having to break this news to us. What a crap job it is, ruining people's lives like that. He picked her up and she smiled at him. He measured her head again. Small. I asked about her microcephaly, and if she would look deformed. He said, what, you mean like Zippy the Pinhead? I could not believe he actually said that. When I recovered, I said, yes that is exactly what I mean. I saw microcephaly on your original report and that's exactly what I thought of. He said no, she's beautiful, her head isn't that small. She's just small. No one will ever know.

What he didn't come right out and say was that everyone would know that our child has a brain injury that cannot be fixed. That cerebellar hypoplasia, her likely diagnosis, is one that will affect her for the rest of her life. He talked about the brain's plasticity, especially in very young children. He said that it's very encouraging that she's been responding so well to PT. That healthy parts of the brain will often compensate for parts that are damaged in some way. He wouldn't commit to a prognosis, saying it's really anyone's guess how she will do with more therapy. He did say we needed more services, and now. More PT, more OT and speech too. He agreed to write a letter to the EIOD for us to try to get the contract amended now. He told us to come back in another three months or so. I couldn't think of anything else to say, so we gathered our belongings, a copy of the report, and our girl, and we left. I didn't take any pictures that time.

I'm not sure when the tears started, or when I realized that I was not surprised. I knew there was something very wrong all along, and no one believed me, and here it was. I am not sure when I went from being sick from nerves to being sick from finally knowing the truth. I only know that I was suddenly acutely aware that my life would never be the same. It was cold and grey outside, bleak and raining. We had no umbrella, I was late for a meeting at work that seemed important when I booked it, but we needed to walk. We needed to talk. I needed to cry and hug my baby. I had her bundled up in the Angel Pack on my chest. She fell asleep and my heart grew fiercely protective of her, of our family. And I heard myself say something I never thought I would. I stopped dead in my tracks on some decrepit sidewalk on Amsterdam Avenue in Washington Heights and grabbed Johnny's arm and I begged him not to leave me ever. I told him that this was going to be very hard for all of us for a very long time and that I know marriages have ended over less serious things. He is my love, my life partner, my best friend. I could not do this without him. We would need each other through this and Freyja would need us both. He hugged me and made me promise too. And I cried. I cried because this was not what I signed up for when I told Johnny two years ago almost to the day that I wanted another baby. I cried because I was ashamed that I actually thought, stupidly, to myself what if she never goes to Harvard? I cried because I was crying, if that makes any sense. I wanted two girls close in age who would be in similar stages of development at the same times, who would be the best of friends and the worst of enemies but always as thick as thieves. I thought of Bee, only two and still such a baby emotionally but precocious in every other way. She's learning to read and write as she's learning to sit on the potty. And now we don't know if Teeny will ever do any of that. Bee - my mini-me - loves her sister so much. I never had a sister growing up but always wanted one. What is it like for a gifted child to have a special-needs sibling? What is it like for parents to have two children with such disparate needs? Whatever is in store for this family, it wasn't what I planned.

I know I'm not in control here. I know there's nothing I can do about this but a lot of footwork: research, phone calls, appointments. I have to practice doing the things I hate most - calling people I don't know and asking for help, asking questions I don't want to be asking. I have to worry about how we are going to afford all this. I have to practice telling people. Someone close to me asked me not to blog about this. I understand why. This is big and personal. Family business. But it's our reality. We don't know what having a diagnosis of CH is going to mean for Teeny. I have to tell people, because as one person I told put it, knowledge is power. I tell people and they know people who have access to resources, people who have special needs kids, people who can help. Three days in and I'm already on a Yahoo group and a Facebook group. I have a dozen schools and research facilities to look into. I have seen videos of CH kids walking, running, swimming. They move like Teeny does - weakly and with little coordination, but with a sweet determination that cheered me. Most importantly, they move. I have already seen CH kids who have grown into adults post in the Facebook group assuring parents of newly-diagnosed CH babies that they have a chance, that they themselves have graduated from college, can read and write and run and dance. On the other hand I have also read about the high rate of autism amongst CH kids, and how many of them are non-verbal. They have poor eyesight and often have poor hearing. Some walk with walkers. Others never walk or even sit. Time will tell what this means for Teeny, but right now I already know that our lives are different. I blog about my life and my kids. How could I not write about this?

I'm turning 40 soon, and I've had a lot of bad things happen in my life. This is without question the worst of the worst. And yet I am handling it better than I have handled many things, and it's because of you all. If you're still reading, it means you care. I have support now. I have the family I always wanted, I have a job I love passionately. I have friends and extended family who reach out and continue to even when I'm overwhelmed with life and don't get back to them. You aren't keeping track of who called whom last. You know I need support even if I don't want to talk about it, so you reach out. The people I have shared this with personally have cried with me, they have hugged me, they have expressed their unconditional love for us. Some of them are doctors, and have offered to review the records and offer their expert opinions. Others are moms who have been in my shoes in some way or other, feeling the fear I am feeling right now. And still others are just people who love us and are sad that this is happening. But they have all said the same things. I am so sorry. What sad news. I am here for you. What can I do to help?

Here's what you can do: you can be my friend. You should know that right now I probably hate you a little bit, especially if you have a child with a fully developed cerebellum. So basically that covers nearly everyone I know. The rest of you I hate for being childless and not having any idea what it feels like to have to be selfless and put another human being's needs first, and to be so scared of what that means. I don't really hate you, you know. I'm just feeling a touch of the Why Mes and Why Not Somebody Elses. I'll get over it eventually, but I will get over it faster if you ignore that I feel that way and just act like my friend. Take me to coffee. Come with me to get a manicure (I desperately need one) or a massage or let's go for a run - make me find the time. Offer to babysit and know that we probably won't take you up on it. Offer to come hang out with us. You can bring takeout or a six pack and we can watch movies and chat while the girls are asleep. And please: Pick up my kid when you see her. Hug her and treat her like you did a week ago, or a month ago, before you knew. She's the same happy and loving little girl that she was on Wednesday, before we knew that this thing had a name.

I don't want you to act like she's contagious. Now more than ever she needs people in her life who make her smile, who encourage her to move and to engage, to push buttons with her, to ask her to poke at your nose and point to bright lights, cats, and Daddy. 

Forgive me for saying this, but I don't want to hear anymore about your sister's cousin's friend's kid who didn't walk until three but is now an Olympic gymnast. Those stories were encouraging a few months ago but not now. However, if you are parenting a fragile child, a special needs child, a child whose health and/or well-being is somehow compromised, if your life was forever altered by a doctor's diagnosis, no matter how similar or different, I do want to hear from you. I want to learn from you. I want to know how you became resilient and how you take care of yourself. I want to know what you had to do; how you battled the insurance companies, the state, the many agencies; whom you know; and little things like how you had to behave, what you had to wear and if people took you more seriously or gave you more financial aid if you covered your tattoos. You think I am kidding. I'm not.

I don't want you to tell me you admire me, that you don't know how I do it. I've been mama to a special needs kid for three days now and already I seethe inside when I hear that. You do what you have to do for your kid, right? It's not like I have a choice. I know this comes from a good place, but I'm not in a good place with this yet so I can't hear it.

I don't want you to tell me that she's an angel or that God only gives us as much as we can handle. Give me a break.

And if you are a health care professional, please do not call me Mom. I am not your mom. I am a person and if you don't know my name or have two minutes to look it up on Teeny's chart, please just ask me. If you don't, I will simply ask you to please call me Aimee.

What is cerebellar hypoplasia after all but two words -- two words that don't define me or my daughter. I am not "Mom." I am Aimee, and this is one thing about my story. One thing of many. And she is Teeny, and this is only a part of her story too. She is a fighter. And she's ours.






4 comments:

  1. I hope you find those friends who you can best relate to, who are long on good advice and short on flowery inspirational sentiments. I can't speak from there, but I can almost definitely promise that you will have two girls who are best friends and worst enemies and sisters, life long.

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  2. My dear and wonderful Aimee.
    Next year, either around Easter time, or the beginning of summer when school is out, I will definitely take you out. Or babysit. Or both. I will definitely run to your kids, and you, and Johnny, and give you all the love and the hugs and the kisses I have been saving for all of you ever since I saw (only the two of you!) last.
    I will watch movies and chat and laugh and talk and cry and play and enjoy. Sumarrós too. She is so excited to see all of you :)

    You do what you have to do for your kids, and for yourself. That is the only thing that we can do. I will be there along the way, if you ever need me. I can take screams and cries and laughs and love pretty well.

    Love you guys.

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  3. Aimee!!!!! Thank you for writing this- you have no idea how much comfort I got as I read this and related to so many things you described. We're going through the neuro thing right now and everything you wrote here is so true. MRI fasting, hospitals, gifted sibling, Autism, making connections, and MY NAME IS NOT MOM!!! Thank you for being real. This is what I needed right now!

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  4. Aimee, I just love you so much. I don't know what else to say. The way you take care of business, and the way you let it rip. My mind is blown, reading this just now. Freyja was just a little younger than this, I think, when I got to hold her, and fell instantly in love.

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