Diagnosing Hypochondroplasia: the first step

You'll notice a tab below the blog's title banner labeled "Our Story." I realized today that I never completed the full story of how Belalu was diagnosed with hypo. So, after a long jump in time, I'm picking up from that thread. The last post was here, when we realized she was unable to straighten her arms. Her growth chart was showing some slowing down, but not enough to alarm the physician too much.

I've found some pictures to show how she usually held her arms:

At two months

At four months

It's hard to tell because of her dress, but if you look closely, you can see that they are not completely straight. This is as straight as they would go.

So, she was enrolled in the Birth to Three program, and we'd have a teacher, PT, and OT visit the house every other week to work on her tone and mobility. Her arms seemed to be getting looser, and I was convinced that everything was physically fine with her when we had her nine-month well check.

Our regular pediatrician was out on maternity leave, so we saw a young doctor who was there while she was out. We got through the whole exam, and just as it appeared that we were done, I asked him, just to confirm what I already thought, that there were no concerns about her height, since the Dr. had mentioned something at the last appointment.

He looked at her chart, looked and her, and said yes, actually, her height was still dropping, though her head was increasing. Then he said, just like that, as if he were talking about the weather, "you know, she has the characteristics of a dwarf." J and I just stared at him. Then I told him that I had actually asked the Drs in the NICU if that was a possibility, and they said no. He asked us if they had tested her for dwarfism. We said that they had given her what seemed liked hundreds of tests in those ten days, surely one of them would have picked it up. He said that it was a specific test and he'd check her records. He left us alone there in shock for a few minutes and then came back and said there was nothing there about it, so he'd call the geneticist at the other hospital and find out. "I'll give you a call in a couple of days," and that was it.

Ok, I may be remembering in fragments- I do recall he did at some point say something about how she would be able to lead a relatively normal life, that it wasn't a big deal, blah, blah, blah... but his attitude was complete nonchalance and almost dismissal. We had overrun our time for a well check and he was ready to pass us on to someone else. We never heard from him again, and didn't really want to. After a day of waiting and wondering, I called the geneticist myself and found out that she had not been tested and scheduled the early appointment we could get- for two and a half weeks away.

I spent that time asking myself: if she had dwarfism, how could everyone have missed it? All those tests, all those days in the NICU and subsequent Drs appointments at two different hospitals, all the specialists... I refused to form an opinion about it until someone told me with concrete evidence. J, meanwhile, spent what seemed like every day and every night researching the internet, learning about all the different types of dwarfism. One day he was convinced she had one type, the next day it was a different one. I couldn't listen to all the medical terms and speculations- I just wanted to know for sure what was going on. I refused to get upset before there was a diagnosis. She was fine, she was healthy- this was all I could see. But after a while, J settled on hypo and there was my explanation for why no one had realized it before. And I started to believe it, and I started this blog to work through my thoughts about what this would mean for her and our family. My first few posts live that experience.

Thoughts a Year In

We are now over a year in from the diagnosis that changed our lives. In many aspects, life is exactly the same as it would have been if Belalu didn't have hypochondroplasia. Nevertheless, it's always in the back of my mind, but just as one facet of the many that make up who she is and how she'll face the world.

I am not afraid of different. I love that my daughter is different, and hope that my son will be, too, in his own way. I do not wish for either of them to have "an easy life." That does not mean I want their life to be hard, but I won't wish away the difficult moments. Easy does not make strong. Easy does not invoke contemplation and growth. Easy does not stir us to respond to challenges that compel us to shape our values and define who we are.

I cannot anticipate the challenges either of my children will face. I just try to prepare them to be morally and emotionally strong, compassionate and respectful to themselves and others, and to have integrity. To search for their passion and to value their place in the world. With these tools, I hope they will be able to face whatever challenges arise, and they will be better people for it.

Our Story: Ten Days in the NICU

That day after Belalu was born and had been sent to the other hospital began a week and a half of surreality (I think I'm making that word up) that I wouldn't have been able to anticipate. I was alone in the hospital room in town, while J and our newborn daughter were in another state. He was essentially all alone, too, as he spent the day helplessly watching as they subjected her to test after test. She continued to have blue episodes, and we were very concerned about how the lack of oxygen would affect her cognitive development. Honestly, I don't now remember all the different tests she underwent, but I know they gave her an MRI and a CT scan. It was a Friday, and by the end of the day they had some additional testing to do, but since it was now the weekend, we would not get any further answers until Monday. So, we had to accept that we would continue to be confused and scared and not have any answers to allay our fears for at least two more days. We felt helpless.

My hospital discharged me as soon as possible, and by Saturday afternoon I was with my baby again. I tried to spend as much time in the NICU as possible, but the nurses would constantly urge me back to my own room as I fell asleep with her in my arms. J was back home with Juju and Essie, so it was a quiet, lonely room, though I was so grateful for the Children's Miracle Network that allowed me to stay at the hospital for free. It was so hard, though, being in the neonatal wing, hearing all those other families loving on and enjoying their newborns and then going home with them as I continued to wait until the day we could leave with her. I believed that my newborn needed to be touching one of us almost constantly- E had slept with us from the very beginning, even while still in the hospital, so having a long hall and many walls between us was a separation that wore on me physically. The few times I left the hospital to get some fresh air and a change of scenery, I think I had something resembling a mild panic attack. I would have trouble breathing, my pulse would race, and I just felt anxious until I was back holding her again. At the same time, I was experiencing my first nights without Essie. I had never been away from him overnight before. Those four days I was worried about when I thought all I'd have to deal with was a c-section seemed like nothing compared to 10 nights in another state.

I'm not sure if it was the pain medication I was taking from the operation or just plain shock, but I felt very little emotion during the NICU days. That first day, I remember looking down at my tiny little girl, who had had a healthy, uneventful pregnancy and had been born on her due date and just wondering- what were we doing here? It was a surreal place. There were no windows and the lights were always very dim. Most of the time, the only sounds were the beeping of machines or the low talk of the nurses to each other. It felt completely removed from the rest of the world. Suddenly, we were in a new category of parents. Our daughter was most likely going to have special needs. We both come from families with very little health concerns- I always took my health for granted. I had stepped foot in a hospital less than five times in my entire life- and almost all of those times were related to visiting people who had given birth. And yet, here we were. I couldn't wrap my head around it.

They finally figured out that the blue episodes were seizures, but this lent little knowledge to her state. We were just going to have to wait and see if there would be cognitive or physical delays; if the seizures would appear throughout her life or if she would outgrow them; if she had a condition with a name or would have no further health concerns. There was one Dr. in particular who was determined to give us an answer as to why this was happening, but at the same time told us that the best news would really be that there was no answer to the seizures, because that meant she might just outgrow them without further complications. Ultimately, that's how we left the hospital: without answers. They had figured out a medication that seemed to stop the seizures (Keppra), but that left her sleeping almost constantly. She was to be hooked up to a monitor in case her breath stopped or her heart slowed, an infernal machine that would go off throughout the night because she liked to sleep on her stomach and this made her breathing shallower. We were trained in CPR in case a blue episode came and didn't go away, and I was petrified she would die in my arms, because I still had a hard time recognizing the episodes when they did come.

Interestingly, that first night I was reunited with her she was lying asleep in my arms and I was just watching her. J and I had been lovingly joking to each other about her short legs since the ultrasound, and her arms and legs did seem to be disproportionately shorter than her torso, with its hugely distended belly. Suddenly, I thought to myself, "maybe she's going to be a dwarf." "Maybe that's all it is." I didn't realize then how many health problems people with dwarfism can have, so at that moment it would have been such a relief to me to know it was dwarfism and not a more dramatic physical disability like CP, which had been proposed at one point as a possibility. When I asked the medical team in the morning if Belalu could have dwarfism, though, they resoundingly told me, no, it wasn't that. This strong negation of my guess then obviously made her diagnosis nine months later so much harder to grasp.

A Stool for Belalu

Our daycare/preschool center is affiliated with the university where we teach, so in addition to each classroom teacher, each room also has a number of university students who work there as well as other students who come in to get classroom experience while taking early childhood courses. It's a great program and has been named one of the best in the state. We've been really happy there, for the most part.

I mentioned yesterday that B's teacher told us she had ordered a stool for her and we had been taken aback, because it seemed like it was too early for those kind of adaptations. I've been thinking about it and realized that what most bothered me about it was her being singled out already, before it seemed necessary. I resolved to talk to her teacher about it tomorrow, when she went back to school.

Tonight, however, was date night, and we're very lucky that one of the center teachers lives two blocks from us. She's still a student, but her maturity level far exceeds her age. She's studying Special Education and hopes to work in our district when she graduates. Her mother was Belalu's classroom teacher until she (B) moved into the toddler room a couple of weeks ago. Anyway, she watched the kids tonight and before she left I asked her if she knew the full story about the stool, because I had some concerns.

She told me she was glad I had asked, because she'd been meaning to bring it up these past couple of days. She then explained that she was the one who had initiated the stool being ordered. There are two sinks in their room; one they all can reach with help of a small stool, though she said Belalu has to reach in more than the other kids, and another average-height one that is where the empty cups end up after meals- they have to toss them in because none can reach to place them in. I asked if only Belalu would be using the stool, and she told me that in that room, it was going to be for all of them. However, it would then move up the rooms with her, as needed. These had been my two primary concerns. She also explained that she had been very intentional when picking it out for her, so that it would have railings that she could use. She assured me that she understood how important it was that Belalu not be singled out or treated differently. In fact, she brought that up before I had a chance to ask. I know a day will come when she'll need some modifications or adaptations made for her, but I'm glad it's not here yet, and I'm so relieved to know she has an advocate keeping an eye on her when we can't be there.

22 Months: An update

Belalu is quite the toddler these days. She will emphatically point her finger at you and say "no!" in a very firm voice. She oftentimes insists on walking up and down the stairs by herself. When she can, she'll hold a railing, but if not, she'll use the wall and then swing her leg around till it's on the next step. Going down, she carefully will walk or scoot on her butt, depending on how tired she is and how high the rise is between stairs. She sometimes will pull her brother's hair or hit him when he won't share with her, but then immediately rubs the same spot and gives him kisses and hugs.  Getting her in the car seat these days is often a physical struggle, and then she has to be removed screaming from the same seat when we reach our destination. However, it's not all testing limits and gauging power. When she hasn't seen me in a couple of hours, I get a very high-pitched screech of pleasure and then an enthusiastic "mama!!!" She talks a lot, and prefers to sit and look at a book by herself rather than be read to, though that is being requested more and more, too, especially if it involves Elmo. This amazes me, because she has no interest in watching Sesame St, and has maybe seen three clips of it in her life, and yet adores all the books and toys we have that feature him. She loves to sweep and help wipe up spills (in fact I think she often creates those spills just so she can wipe them up).

When I try to sing to her, she usually puts her hands over the ears or says repeatedly until I stop, "no, no, no!" When her brother sings to her, she claps and says "yay!!" They both are working on sharing, as her interest in what he's doing grows. E has learned to ride a big boy bike now, so we lowered his balance bike hoping it would be low enough for Belalu, and I really thought it would be, but was very disappointed to discover that it's not. She's really interested in bikes, and every Tues when we leave the Y, there's a women's bike group gathering for a ride at that time. Belalu just stands there and looks at all of them. I have to pick her up and carry her away or she'd never leave.

The biggest milestone for me lately is hard to discern below, but is the best picture I currently have on my computer of her ..... pigtails!!! Her hair is finally long enough to put up! I'm trying to get her to let me pin her hair back with a barrette in the front, since she sweats so easily in the heat, and the best strategy so far seems to be putting in about five in a close row and hoping she tires of pulling them out before she reaches the last one or two. I've never been able to keep a headband on her for more than three seconds.

She's now in the toddler room at daycare, and the teacher told J yesterday that she's going to order Belalu a higher stool for the sink. I guess she wanted to put her cup in the sink by herself and couldn't do it, so another kid helped. But the way she described it, B wanted to throw it into the sink and couldn't, so we're wondering if it was more about her coordination than her height. I need to talk to the teacher myself and ask more questions for clarification. Obviously, we are happy she is being sensitive to B's needs, but we're wondering if it's really necessary right now for her to have a different apparatus already.

Besides bikes and bubbles, Belalu's favorite thing ever right now is babies. She is mad about babies. Whenever she sees one when we're out and about, she shrieks "BABY!!!!!" and runs over to pat its head or give it kisses or stick her finger in its eye or nose or mouth. Given her affinity for them, I thought she'd like the documentary "Babies," which E had seen and liked at about her age. Ummmmm, yeah.... she might be a bit obsessed. Every time she sees my computer now, she shrieks "babies!!!!" and runs over to it, repeating the word until I put it on or dissolving into a fit of tears if I don't. She won't watch cartoons, but she'll watch this for a good 30-45 minutes. One day I had taken it back to the library and she was insisting on watching it, so J found a National Geographic documentary on Netflix that she happily watched most of. I was happy she didn't like watching tv, but with her toddler moods, it has been nice to have a little peace and quiet while I prepare dinner or to be able to sit and knit while watching it with her.

So, that's our soon-to-be two year old lately. She is adored by us all, and we love witnessing her develop, even as she continues to be the sweet, independent, determined girl she's always been, just in new ways.

Out Story: Belalu is Born

We had the EV (external version) scheduled on her due date, August 18th at 10 a.m. In the middle of the night before, I had a lot of contractions, but didn't think too much of it. When we got up, E asked if we could take a walk around the block, so we did- literally one block. My contractions increased during the walk, to the point where I had to hold on to J's arm by the end. We got back home to get E ready for daycare and us the hospital, but I quickly realized that I was in labor and we needed to go right then. We dropped him off, and when we got to the hospital I was over 8 cm dilated.

I knew Belalu was still breech, because together with the contractions, I could feel her kicking me- she was lying diagonally. They gave me a shot to stop the contractions and the Dr. came in to tell me we'd be going right into surgery, since they couldn't do the EV if I was in labor. By that point, I had resigned myself to letting go of all expectations for her birth. My low point had been earlier in the week, and at this point, I just wanted to meet her and make sure she was healthy. So when the local anesthesia didn't work, and they told me they would need to give me a general one, I just surrendered and said, "fine." I still remember lying there in the OR with all those people around me, saying good-bye to J and thinking, "I am living exactly what I was petrified of." I wouldn't even be conscious when she was born. My sister, husband, and sons would meet Belalu before me. It was the complete opposite of E's birth. But as I was thinking all this, I was calm because I had surrendered all control at that point. It was what it was. As long as she was healthy, it would be fine.

Once I finally was able to hold her, I was happy to see that she nursed right away. Her apgar score was not great at first, there had been a lot of meconium, the nurse told me. She had been born at 11:40 a.m. and was 7lbs 9oz and 20 in long. Soon after we had met, Belalu was lying in my arms and J noticed that she was turning bluish/purple. I didn't think too much of it, because babies are so funny looking and weird colored at first anyway. But it happened a couple more times that afternoon, and he was really worried. The nurses and mid-wife, however, dismissed any concerns.

That night, everyone had gone home and I was lying in bed, dosing, with her in my arms. A nurse came in and told me the Dr.-on-call wanted to do the newborn exam and it wouldn't be too long. I dosed off and woke up an hour later. It was about 4 a.m. Belalu still wasn't there. I called the nurse and asked where my baby was. She told me the Dr. was still observing her. I dosed again, woke up, and asked once more why they hadn't brought her back. She told me that the Dr. would be in soon. When she came in, the Dr. told me that she had detected a heart murmur and Belalu had turned blue again. They were going to send her to a hospital across the river in another state, half an hour away. They had called an ambulance to take her, but because of my surgery I had to stay where I was.

I called J at 6 a.m. and told him what was happening. When the Dr. had been telling me all this, I was numb and completely calm. When I talked to J, my voice broke. Having to say it out loud was much harder than just absorbing the info as they told it to me. He came right over, and they wheeled our baby into the room so we could say good-bye. She was so tiny in that huge incubator. She just looked so alone, and I reached in through one of the holes to grasp her little hand and give it a squeeze. J followed behind the ambulance to spend the day with her as she underwent a battery of tests. I was left back at the hospital, alone.

Our Story: The final days of pregnacy

It had been so exhausting traveling alone with a toddler three weeks out from my due date. I got home that night and collapsed into my bed. As I lay there, I could feel her flip inside me. I had an appointment scheduled with the midwife the next day, since she hadn't seen me for a month, and she confirmed that the baby was breech. I panicked.

I did not want a c-section. I wanted a completely natural birth. I had had such a wonderful experience with E, and I had been hoping to have an equally great experience with Belalu. Plus, I had E, who had been my constant companion all summer and who I was already worried was going to feel slighted when the new baby came along. He had been super clingy in the past few months and I couldn't imagine that having a baby would make that better. Not to mention, having to stay at the hospital for four days of recovery and then not being able to lift him.... I did not want, could not have, a c-section.

I went to work trying to get her to turn. I had read that sometimes babies flip for a reason, so I didn't want to do anything invasive in case she had the cord around her neck or something equally dangerous. For example, I was offered some homeopathic pills that I decided not to take (and I was forever relieved that I had made that choice, since I had so many what-ifs on my list while we were in the NICU, and this was one less thing to wonder about). I did do handstands in the pool and supported shoulder stands at home. I had done hypnobirthing with E and hadn't really trained with it as much this time, but I did order the CD for flipping the baby. I drove and hour and a half to see a chiropractor specializing in pregnant women. I did acupuncture and moxibustion. I did everything I could to get her to flip back, but nothing worked. The last option was an external version (where the Dr. physically turns the baby from the outside), but it could induce labor. J was due home five days before my due date. I really wanted him to be there for the birth, so we decided to schedule the EV on my due date. I was scheduled to go in at 10 am, and was told to be prepared to have a c-section that day if the EV didn't work.

In all these days leading up to my due date, I felt helpless. I saw a c-section looming and was petrified. I didn't want surgery. On the other hand, all this time I spent trying to flip the baby was time I could have been spending with E enjoying our summer together. This wasn't how it was supposed to be. First, this baby comes out of nowhere and now I'm going to get cut open because of her? How had I gotten to this point? What was happening??!?!? (I'm sure the pregnancy hormones and not having my husband there didn't help my mental state ;) I was angry, I was scared, I was frustrated. I felt completely and utterly helpless. It was my lowest point- those finals days before my due date. Little did I know then, it was all just making me stronger for what was to come.

Our Story: The Ultrasound and the rest of pregnancy

Since I had no idea how far along I was, they scheduled an ultrasound for my first appointment. I was already into my second trimester, so not only did I find out I was pregnant that week, but that I was having a girl! It was so surreal- we had been hoping for a girl, but even that news was a little muted by the overall shock of me being pregnant and having an important job interview two days later. I had essentially skipped the whole first trimester, at least in terms of the waiting game. Mid-August didn't seem all that far away.

During the ultrasound, the technician made a comment about Belalu's legs being short. No one took it any further than that. And when I mentioned this detail to Dr. Pauli last fall, he told me that it would have been too soon to detect hypo based on leg length. But the fact remains, her legs were shorter than average from the beginning. Incidentally, we didn't do any testing. It was too late for many of them, but I wouldn't have done them anyway, just as I hadn't with Essie. I was very upset that I hadn't been taking prenatal vitamins and had been taking birth control, but the nurses and midwife assured me that the baby was healthy. Luckily, I don't drink much alcohol anyway, so while I had had some while unknowingly being pregnant, it would have been a drink here and there. Nevertheless, all these factors raced around and around in my head when we got Belalu's diagnosis and the nagging question is still there: did I do something to cause this condition?- Even though I've been assured by many Dr.'s that isn't the case, I still wonder, how much do they really know about hypo and the factors that cause it?

My pregnancy was pretty uneventful. I had had gestational diabetes with my first pregnancy, but strangely enough did not have it with the second. I did travel to Argentina when I was 7 months pregnant. It was a grueling trip for work and especially hard while bringing a nursing toddler along. Later that summer J went to Spain to visit his family while I went to Maine to visit mine. He didn't want me home alone with E for a month, so I flew back home with Essie by myself three weeks before my due date. Again, more "what-if" factors for us to mull over while in the NICU.

Our Story: Discovering I was pregnant

I had wanted to have kids close in age, but 2011 was going to be a very busy year. We had three overseas trips planned and a trip to the East coast. I was going to be interviewing for a tenure-track position at the university where I had been working on a contract basis since 2005. If things had gone according to the first plan, my second child would have been born at the beginning of Summer 2011, but with the busy year ahead, the second plan was to have him/her the beginning of Summer 2012.

In December 2011, E was still nursing, but it suddenly got very uncomfortable for me. I was nauseous, but not to the point of illness. I just didn't have much of an appetite. My lower back had begun to ache. I was feeling sluggish, but we had just moved E to his own room in a crib and he wasn't taking it well, so none of us was getting much sleep. It was winter, and the cold didn't do much for my exercise motivation. I figured my back hurt because I wasn't getting enough exercise, and I also blamed the lack of exercise on my lack of appetite.

Three months later, we go to Puerto Rico during spring break. I haul out the summer clothes, and I'm dismayed to discover that they are snug. If I overindulge, my stomach is the first place I show it. I was still exhausted, but that was pretty much a common state for me those days with an active toddler, a full-time job, and a dissertation to defend. Then I almost fainted, twice. Suddenly, (yes, really, it took that long) it occurred to us that I could be pregnant. J said it first. I remember exactly where we were in Ponce, PR. I had just left the Music Museum after nearly fainting. It was hot, there was no air conditioning, I could have been dehydrated... I excused it away, but J pointed out that my back was bothering me, my stomach was looking really round, and I was constantly needing to pee. The possibility began to enter my thoughts slightly, but it was still too terrifying to acknowledge.

The first day after returning home, while J was still at work, I took out the other test from the box I had used with E and gave it a try. Positive. I couldn't believe it. I couldn't get ahold of J, who was in a meeting, so I called my sister. She was excited- I was petrified. This wasn't the plan. It couldn't happen this year. I had too much going on. I was on the mini pill and nursing. I couldn't be pregnant. I had an interview later that week for the position I had been working towards for years. I couldn't start a new job by going on maternity leave.

I called my midwife's office and explained that I thought I was pregnant, but that maybe the test had expired and I should get a new one. She asked me what made me decide to take the test, and when I told her all the "signs," she just laughed and told me I was definitely pregnant. We had to schedule an appointment right away, because I didn't know how far along I was. Though December's discomfort did enter my mind, I couldn't believe I would have made it three months without realizing I was pregnant.

In spite of all my logistical concerns, I was actually pretty happy that I was pregnant, since I had wanted my kids to be close in age. Work pressures had forced me to postpone my original plan, but apparently someone else had their own plan, and she wasn't waiting for me to feel "ready" for her. She was coming on her terms. (I have a feeling this is going to be a life-long theme with this girl ;)

Our Story: Introduction

Belalu, May 2012

Around this time a year ago, we were in limbo. We were waiting for an appointment with the geneticist to see if she would diagnose Belalu with a form of dwarfism.  J was pouring over webpage after webpage, trying to determine if she had dwarfism, and if so, what kind. I was trying to stay neutral, waiting to see what a Dr. said before reacting to something that may not have even been true. He would come to me several times a day with medical terminology I had never heard before and couldn't wrap my head around "lordosis" "foramen magnum" "skeletal dysplasia"... My head spun with it all. Then there was the diagnosis. And I began writing here, to sort out my thoughts. However, I never did get around to talking about the year and a half before that: my pregnancy and her first months. I kept meaning to, but just never did. So, now, on the one-year anniversary of learning that Belalu has hydrochondroplasia, I want to do just that. I'll post by stages. I remember first entering the LP world and soaking up every bit of info I could find that could give me some insight into my daughter's condition, so I'm hoping that parents in a similar situation may find this helpful or interesting in some way.

Noticed

Today Belalu's size finally hit me. Her friends are all different ages and sizes, so I never really saw before how small she is for her age. Some friends of ours have a daughter who just turned one recently. They have an older daughter, and when Belalu was born, they gave us a bunch of clothes for her to wear, and then I was going to pass them back for the second daughter after she was born. Now, the second daughter is passing on her clothes to Belalu. They are almost a year apart and are the same size or in the case of pants, Belalu is far smaller than the other child. Most of her pants are size 6-12 right now, but she also still wears some 6 or 9 month ones, and those are the ones that best fit her leg length.   

As an introvert, I like to observe. I don't like to draw attention to myself, especially if I'm out in public or in a group setting. I get very nervous and ineloquent when everyone listens to something I'm saying and stumble around saying whatever comes into my head. I then spend the rest of the day/night rewording in my head everything I said. So, as it becomes more and more apparent to the random observer that Belalu is different, the more nervous I get about confrontations, difficult conversations, a litany of questions; when all I want is for me and my family to go about our business unnoticed. I know I will need to set an example for my children, and I'm really afraid that I'll think of the perfect response or thing to say... five hours after the fact. I don't know how to prepare myself for what's coming, because I don't know what it will be. And it'll likely be when I least expect it. I try to tell myself that humor and equanimity are the best traits to cultivate. So, I'm working on starting there.

Book Review: Little People: Learning to See the World Through My Daughter's Eyes

I've been slowly making my way through this book since last summer. I've really enjoyed it, but it is so close to home I've found myself only being able to read it while in a pensive mood already. It brings up a lot of questions and thoughts that I don't always want to think about right before falling asleep, which is usually when I have time to read for fun.

Dan Kennedy is the father of a girl with achondroplasia. I really appreciate and relate to his thought process as he searches to find meaning in the diagnosis and grapples with where his daughter will fit into society. It was affirming to read someone's perspective with whom I share a lot of the same conclusions, if not a bit unnerving to read about someone going through a similar thought process I was in the middle of undertaking myself.

That was also the most unsatisfying part for me about the book. The parts where he talks about his struggle to understand what Becky's diagnosis will mean for her was almost too familiar. His questions then are my questions now. And of course, since it was written in 2003 and she was on the verge of adolescence, there are no answers. I finished it and wanted a sequel.

I realize my questions about Belalu's interactions with the world will only be answered with time. I also realize that Essie is also likely to have difficulties at some point- I think most people do. (At least in our culture it seems to be a common part of growing up.) But I only find myself worrying about her. What if.... what if.... what if... you can drive yourself crazy with those "what if"s. And then I see her determination, her intelligence, her love of people, and I find myself thinking "This girl is going to be teaching me a whole lot about life and how to take on challenges." Because I really think that's what she's going to do. And I know she's going to be fine, rough patches and all.

I've got two more books regarding dwarfism on my reading list for this summer. This one is next. Anyone want to read it with me and have a virtual book club?

Comments with the "m" word

I didn't think it would happen so soon. Both times it took me completely by surprise, as I suppose it always will. Neither was directed towards Belalu, and so were conversations I happened to overhear.  The first time was about two weeks ago. We were at the Y, and it was someone who occasionally watches Belalu in the daycare center there. We were going into the daycare center and she was holding the door open and commented to a guy she knew: "I figured basketball's going on with all you tall guys coming in- I feel like a midget!" Essie had to go the bathroom, so I hustled him in, thinking about how I could approach her about it. But when we came out of the bathroom, she was gone. I thought about it a lot for the next few days. I decided that it was important to talk to her about it, since she could potentially spend time with the kids and may use the word again. Or even use the word in front of her kids and they would think it's ok to use, too. Or what if one or both of the kids had heard and understood? What kind of example would I be setting for them if I just let it go without talking to her about it? So, I wished I had said something. Then, I saw her again a few days later (I don't usually see her so often) and thought about talking to her then, but just didn't. I chickened out.

The second time was last night. E and I went to his first play. It was on campus, and we had a great time. As we were leaving, we passed the student who has dwarfism (I'm guessing it's acon, but I don't actually know), and stopped to talk to her about the show. Then we went further down the hall and E got fascinated with an antibacterial soap dispenser. The hall was pretty much empty, and as I was standing there with him, a group of three guys appeared and one said in a a low voice to the other two, "did you see that midget?" His friend said, "yeah, she's a theater major." They were speaking amongst themselves, she was already gone, but the hall was so quiet I heard them clearly. But again, since it was not a comment I was "supposed" to hear, I didn't say anything. However, my mood immediately plummeted. I was sad the rest of the night. Sad for what I heard them saying about her, and really disappointed at myself for not saying anything.

I'm not a confrontational person. I don't usually talk to people I don't know or intentionally draw attention to myself. If I had been part of the conversation in either case, I would have spoken up immediately. And after the fact, I know I should have said something even though I wasn't part of the conversation, but in the moment I just couldn't get myself to do it. It took me too long to get over the shock of the comment and then formulate how to respond, and by then the moment had passed. In the case of the first comment, though, I actually got a second chance, and I still didn't do anything. I feel like I have let my children down. I'm not setting a good example, and I'm not being Belalu's advocate. I've been unexpectedly thrown into a role that challenges me and my sense of self. Clearly, I have a lot of growing to do.

The Lives of Dwarfs

I read this book by Betty M. Adelson over the summer, starting it soon after we got Belalu's diagnosis. While J was online researching all the medical info he could find, the first thing I did was look for blogs, and the second was place an order on Amazon. This is her first book about people with dwarfism, and she recently came out with another one that is on my "to read" list.

As suggested by its secondary title, Their Journey from Public Curiosity toward Social Liberation, the book looks at the status of dwarfs in society from Ancient Egypt through the end of the 20th century. Its subjects include history, anthropology, medicine, art, literature, and theater and film. 

Adelson is a psychologist whose interest in the subject is personal: she has a daughter with achondroplasia. When I started the book, I found some of the writing awkward, to the point of being distracting, but I eventually got used to her style. She spent many years doing research, and it shows. This is the only book of its kind available; one that aims to encompass so many different aspects of dwarfism throughout history. Given my field of study, I found the history, art, and literature chapters the most interesting. I like that there are lots of potential role models mentioned for Belalu. The way the book is written, you don't have to read it all the way through in order, though I did. You could, rather, skip to which sections interest you most, as each one pretty much stands alone.

As I read this book, I found myself wanting to know more about the people, books, or movies mentioned. I think it is a great resource to have in our family library.

Comments

The other night we were at a social event for the kids' daycare and Belalu was walking around amongst the parents and kids. At the same time she took a little fall, a woman who didn't see her kind of tripped over her- it wasn't the woman's fault, and she didn't hurt Belalu at all, but later she felt the need to come up to me and apologize again. I told her not to worry, and then she asked me how old she was.
                     "Almost fourteen months."
                     "Oh. Poor thing! She's destined to have to look up at everyone, even other little kids."

I smiled and nodded, and then her daughter, who was about 7 or 8 added,
"It's so cute- she's so little and she walks!"

They were just being nice, I know, but they have no idea how right they were. The mom's words especially struck me as odd- I mean, why would you say destined to look up at everyone? Most kids will eventually grow to be the same height or taller than their peers.

Also, we've been getting a lot of "Oh, she's just like a little doll!" comments lately from strangers.

More thoughts on Disability

So, I'm still working out what this word means. In general, and for our family specifically. Thanks for bearing with me as I work this through out loud and in stages.

The Word Itself
As a person who until very recently had the luxury of not having to give the word too much thought, I always took the word "disability" to have negative connotations. Dis-ability means, literally, "lack of ability", or "lack of aptitude". In Spanish, the adjective "minusválido" literally means "less valid". It's hard not to see a value judgement in this word, so I believe a more preferred term is "discapacitado." Like the word disability, the prefix "dis" implies a lack; they suggest that something is missing. So, is part of the problem that I am negatively interpreting the term "disability'? But, how can I not? The negativity is inherent in the prefix itself "dis."

This summer I read a wonderful example turning this negativity on its head, which I talk about here. And many people of short stature or parents of children with a form of dwarfism will emphasize that they can do the same things as everyone else, though they may have to do them a little differently. So, where does disability come in? When they cannot do something? When they need special medical care or require corrective surgeries?

Hypochondroplasia and Disability
Right now, Belalu does not have a disability. She is at or well beyond all her developmental milestones. She is not impeded in anyway by her hypo. In fact, we're always so surprised at her reach, given the length of her arms. She's constantly getting into things we thought were out of reach. The other night, she put her leg over the bathtub edge and got out herself! It seems that for now at least, flexibility and determination compensate for shorter limbs.

What is not clear to me, however, is how her condition will inform her physical negotiations of the world as she gets older. Why is there so much emphasis on the one hand about LPs being "just like everyone else" and yet on the other implications that short stature is or can be a disability? When I first heard about limb-lengthening, I thought it was a cosmetic procedure. However, many people say that it helps them get around easier in a world not built for them.

This summer I watched an old episode of Extreme Home Makeover, where they constructed a house for a family whose daughter has achondroplasia. At the beginning of the show, her mom talks about how their house is dangerous for her, the stairs are too steep and too many, the counters and the door handles are too high, she cannot do many things on her own because of the way the house is built. On the other hand, I watched an interview with the Johnsons, a family of dwarfs, and Barbara Walters, and they chose to not change anything about their furniture or their house, even though they were all little people. The parents said they would not raise their children to believe themselves disabled: "We don't have a 'woe-is-me' attitude" seemed to imply that people who consider themselves disabled do? But perhaps that was just the editing from the producers.

So, honestly, I don't know what to think. I still don't have a handle on what it is going to mean for Belalu that she has hypochondroplasia. Will she have difficulty negotiating day-to-day stuff because of her height or her bodily proportions? Will she need to have surgery (perhaps multiple ones)? Will she have a lot of pain at some point in her life? No one seems to be able to tell us that now. Like any parent, I want her to be able to do what she wants in life, and I want her to be happy with who she is. Her hypo is a part of her, but it does not define her.

Dan Savage and the It Gets Better Project

Last week we had the opportunity to hear Dan Savage speak about his It Gets Better Project. He told us the project came about as a reaction to the increased suicide rates of LGBT teens. He wanted a way to connect with LGBT youth, to tell them that life gets better after high school, but knew he would never be invited to speak to them in a public forum. The project features people uploading videos of themselves telling their stories to give hope to teens who may be bullied at school and/or at home.

The It Gets Better Project is one example of how the Internet can provide a powerful service. It's a way for people to connect with others who understand them, people who they would not have the chance to meet and talk with in person at a time when they need it most. I can relate to this need for connection- the first thing I did when I found out Belalu's diagnosis was search the Internet- not for medical info, but rather for personal blogs. I wanted to connect to others who could give me some insight to what this diagnosis would mean for our family. That compulsion was also immediately followed by my desire to join in the voices sharing their experiences. Hence, this blog.

I wish there was a similar project for us, the parents of a girl with hypo. I wish we could go to a website and see videos of LP people telling us about their experiences growing up, overcoming challenges, finding a job they love, starting a family ... That web page doesn't exist, but blogs do, and we can attend LPA events and meet people first-hand who can share their knowledge with us, so we can make sure Belalu finds a life of fulfillment, in whatever form that takes for her.

A couple of things that Dan said last week really stood out for me. Obviously, I have no way of knowing now what Belalu's sexual orientation will be, but I couldn't help parallel a lot of what he said about these marginalized teens to her own possible experiences as someone who will stand out as different and could also be the victim of bullying. First, he said that a lot of kids who are bullied at school go home to parents who are like them- racially, linguistically, etc- and can therefore sympathize with their son or daughter because they have similar experiences. We will not be able to relate to our daughter in this way. We will love her and support her, but we will not have had the same experience growing up as a little person that she will. Which is why I want to make sure that she gets to know other little people and has a network of support to turn to if she needs it.

The other thing that I took away from the talk that directly relates to Belalu is when a student asked Dan if he had any advice for LGBT activists. His response was to always have a sense of humor and to not assume that others are the enemy. I have not had to confront anyone yet about Belalu's condition. She is young enough that it is still not patently obvious. However, I know that we will have many incidences in the coming years where I will have to answer or respond to questions and comments- some of them misguided if not downright ignorant and hurtful. And I will need to model behavior for my children. And right now I have no idea what I'll do or say, and I imagine there will be times when it is so sudden, so unexpected, that it will take me aback and even a stock phrase won't come to me. And humor will not be the appropriate response. But equanimity always is. I write this knowing that equanimity is not my strong suit. Neither is grace or eloquence. But I have time to cultivate them both.

If anyone has any advice to give about how to handle comments, stares, etc. I would greatly appreciate it.

One Year Well Visit

Today Belalu had her one-year well visit. She's actually 13 1/2 months, but I called at the last minute for an appointment and we had to wait this long to get in. Here are the stats for the AH growth chart:

Weight: 19lbs, 11 oz or 8.93kg = 10th percentile
Height: 27" or 68.6 cm = under 3rd percentile
Head: 19" or 48 cm = over 97th percentile

As we already knew from our PT appointment, Belalu has blown past the 12 month milestones and has actually gotten most of the 15 month ones down alreay.

She's walking, waving and saying "bye-bye", says Mama and Papa, that, hola and hi, signs when she's all done, gives hugs and kisses, feeds herself, scribbles with a crayon, puts small objects and different shapes in their corresponding holes, stoops and recovers. She likes to drink from a cup, but gets most of it down the front of her. She understands "no" and "cacaplá" the sound we make with corresponding tongue out if she tries to eat something she shouldn't.

She loves to put on necklaces and bracelets, and then shakes her wrist or walks around patting her tummy and the beads. She'll point to pictures on the wall and say "that" so we'll talk about them with her- really she points at everything and does that, but we do it as a bedtime routine up the stairs and in her room with all the pictures along the way. She loves being outside, playing in sand and water and on the boat, even if it's parked in front of the house.

She is so communicative these days. She points at things and "talks" about them. The past few nights have been cooler, so she's been sleeping in footed jammies. When she wakes up in the morning, she'll start talking in her crib, and when I come in to get her, she's standing up, holding her foot up and pointing at it, "talking" - clearly showing me that her foot has gotten caught in her pajama leg and she wants it back in the foot part. She also looooves taking off her shoes and telling us to put them back on her feet.

She currently has three molars coming in (the first is already all up), but even so, she's been really sweet lately and a lot of fun to have around. She loves playing with her brother and gives him lots of kisses and hugs, along with her Cabbage Patch preemie who came with the name Bella Liv so my mom just had to get it for her. It's the perfect size for her to carry around, and sometimes I'll come in her room in the morning, and she'll be sitting and hugging her baby.

Whew! I didn't mean to go on and on. We're having so much fun with her and enjoying playing and spending time together. Now, if I could just get her to settle in the car so we could drive medium-to-long distances in peace, things would be near-perfect!

Insurance Approved!

Got the official word that our insurance will cover a visit to Dr. Pauli at the end of the month! We are very excited about this, obviously. I have to say, for the record, we've had great experience with our health insurance. A nurse called me last week to see if I had any questions about her health, though when I told her Belalu's condition, she said she'd have to do some research and call me back :) Fair enough.

She then asked me if we needed financial help for travel for any of our visits. ??? Since when does insurance offer that service? Since they are all fairly close by, I said no, so I don't have more details on that.

She also told me they have a free service where in addition to a nurse I can be assigned someone who will help me sort out all the various bills and claims, since we are now working with four different clinic/hospitals. 

I keep trying to figure out what the "catch" is in all this help, since you hear so many nightmare stories about insurance.

Regarding the Word "Dwarf"

The Fundación Alpe site has so many great resources in Spanish about achondroplasia. It has four main categories: Social, Médica, Educativa, y Voces (social, medical, educational, and voices). The description for this last category reads: "To be heard and to listen with attention to others, to those that have lived and thought about subjects that are important to us. Communication is the path to attempting to give some sense to the infinity of experiences in which we live. Here, expressions of subjectivity, perspectives of the world." 

I have only begun to explore all the resources available on this site, but one of the first things that I read really stood out for me as a mother trying to determine what a diagnosis of hypochondroplasia will mean for my daughter's sense of self and her interactions with the world. The original and complete essay is here. It's called "Sobre la palabra" by Margarita Guinovart, who has since passed away. The first part talks about the word "dwarf," according to the dictionary definition and the portrayal of them in Snow White. This is my translation of the last part of Margarita's essay, and I agree with her completely:

“I don’t expect the general population to know every growth restriction by its specific name or to be in-the-know regarding all the health care aspects and other facets related to each case, that would be crazy. I have a great curiosity for almost everything and, logically, I don’t know many illnesses, genetic mutations and deformities that drive many families crazy with worry. We can’t know everything.

My family and my closest friends are familiar with and know very well a large quantity of information of this sort. We are all very familiar with the word “achondroplasia,” but I admit that it is difficult to grasp. When we have to talk to someone outside of this “world,” of course we never say that Marina has achondroplasia. She is, simply, a dwarf. When someone requests more information, that’s the time to explain, to teach, and to bore, if necessary. But not everyone is willing, and we can’t expect them to be.

Perhaps I am excessively conformist, but it’s enough for me that people in general, the people that we pass by on the street each day, don’t get alarmed when they see that Marina is a dwarf. As pretty as any other girl her age, as smart as the others, as capable of becoming a marvelous adult human as any one else, although she’s 'tiny for her species' or 'of extraordinary smallness.'

What I want for my daughter is not that no one calls her 'dwarf,' but rather that this is only a description, like 'blonde' or 'big girl.' But to judge her in her totality, as a person, rather than only for her appearance… This I am ready to demand. I am ready to fight like a she-wolf for that. I’ll do it heart and soul for Marina, who is a dwarf, and for the “blonde” and for the “big girl.”