Clueless

It is finally sinking in that our lives will be different.

I've tried so hard to keep a positive attitude that I don't think I've acknowledged the reality of our situation. I'm working on doing that these days, but I'm back to the place where I don't know how much to tell Sam at age three.

He understands so much more than he did, now he is aware that he can't run as fast as the other kids (or really run at all yet) and one day, frustrated from never ever winning a race, he began bawling. "Mommy, why don't I ever winned the race?!" I picked him up, murmured that he wasn't as big as the other kids, and that I know, it's hard not to win sometimes. Right now he still wants me to scoop him up in my arms and kiss his fat cheeks, but I'm wondering about later.....

When something like this happens in your family, at least for me, you just spend all your time thinking, "OK, whatever we have to do to make things right, he'll be fine, everything will be OK....". He's not that much smaller than the kids his age, maybe we don't even have to approach the whole Schmid thing, and talk to him about dwarfism. But that doesn't feel right either. On the one hand, I don't ever want him to know he's different. But even more, I want him to be proud of who he is and understand why things are more difficult for him than for others.

He already knows something. Then there's this blog, where I've just aired his whole medical history. I'm back to wondering if that hasn't been such a good idea. Maybe I should go back, change the name. But I guess it's probably too late for that too.

Next year he's going to preschool, and I will have to bring him with a step stool. I have to put a hook in the bathroom today so he can reach the hand towels.

He wants to be independent, and still relies so heavily on adults for assistance, going up and down stairs, getting up on a swing...

He's nearly 3 and a half years old, and all these things that you take for granted, he really struggles with. Don't get me wrong, he's doing great, he has well surpassed doctor expectations with his recovery, and we keep focused on that in this house.

But reality is setting in for me. Finally. My 3-year-old boy can't climb stairs without help. He can't run. He will do these things, I'm confident, but it pays for me to acknowledge how tough this must be for him. I don't want to give it too much weight, I don't want him thinking he CAN'T do this stuff, but I also need to recognize what is real for him.

I don't want the kids to pick on him, but am unsure whether he will want the attention of me putting a flyer in everyone's cubbie, a suggestion on the Little People of America's Web site. I thought it was a good idea.... it would help the kids to understand that he's a bit smaller, but they should not pick him up and that after the winter, he'll be coming to school in a body cast, and will have to relearn to walk after that.

It's so hard because he's in between. He's not, actually, a little person. He is small, but he's not that small ... I really want him to be proud of just the way he is, because really, he's perfect. I probably should write a letter to send home with parents. But then, I want him to have the option of telling people himself if he wants. Then again, I need him to know that being small is wonderful, even if our culture places so much value on height in boys and men. But I'm sensitive to the fact that he might not necessarily feel as if he belongs in either world.

What do we do?

I have no idea, I just fluctuate all the time. It's been so much easier to deal with the day-to-day and not think about his future. But here he is, a smart, bright 3-year-old who will get that he is different. He will recognize this, and if he doesn't, another kid will surely point it out to him. Even I am just coming to terms with his differences. You want so badly as a parent to think there's "nothing wrong," but I'm finally accepting, yes, he has a genetic disorder that leads to bone abnormalities, making it more difficult for him to climb and run. This is our reality.

Just the other day, Maya told him he was a little person. I think that's the term she used, which I found interesting because I don't know that we've ever used that term in front of her. I think she was just trying to convey that he was her little brother.

He got really upset, shouting, "I'm not a little person! I'm a BIG BOY!"

I told him that was true, he was a big boy, but that he was her little brother and he would always be her little brother. I told him that I was Uncle Scott's little sister, and no matter how old I get, Scott will still be my big brother. I think he got that. I also said that people come in all shapes and sizes and colors. You know the talk. The acceptance talk in terms a 3-year-old can understand.

The thing is this, how can you help a 3-year-old be proud of who he is, when success at age 3 is measured by who is fastest and who is the biggest? Maybe it's best not to drop a big bomb on him so young .... just kind of gently fill him in as time goes on. I don't want to be deceptive. But then again, he's only three...

And, if I let him in on his real physical limitations right now, will that make him think he is limited always? Will he think that he can't play soccer, which he desperately wants to do? Do I sign him up for soccer if he insists on playing, knowing fully well he can't keep up with the other kids and it might cause him embarrassment and frustration?

I know I have to keep him in activities he can be successful at now, but what are those for a 3-year-old boy? So much of those revolve around physical capability, or at least assume that basic physical motor skills are available. I can sense from Sam that he does not want to think he is limited in any way. We do lots of art projects and have instruments.

Yesterday I mentioned as I watched World Cup soccer (replay) with the kids that I am not a fast runner. I am not a fast runner. But I have endurance, I told Maya and Sam. I can run a lot longer than many people, but I can't sprint fast.

Maya said, "I'm a fast runner!" and of course Sam said, "I'm a fast runner!"

In his little mind, he IS a fast runner, and is it so wrong for me to want to let him believe that? It might actually be wrong, since like I said, some kid will point out to him that he is not a fast runner.

But if he believes he's a fast runner, and wants to become a fast runner, maybe he will. If I tell him he has this condition, will he think he can't ever run fast? Who am I to say he isn't fast?

I don't really want to limit my little boy that way. But I also don't want to ignore what I know.

And on top of all these questions I'm asking myself, Maya had another seizure, for 15 minutes. Her cardiology tests came back fine, so we still think this is something to do with the wiring in her brain, but we're now faced with medication. After four seizures, it's time. I don't want her to have one in class, I think she'll be mortified and scared, and worse, I think the kids will be afraid.

If it changes her at all, we can just take her off of it. It's not like she'll be on it forever. We're still hoping she'll outgrow this, whatever it is. But having ruled out other possible causes, if it is a glitch in the brain wiring, medicine would probably help everything fire correctly. (I should probably note, we feel strongly that we need to make the decision involving Maya and medication ourselves since we have probably educated ourselves more than most on Maya's specific situation.)

I wish it were that easy with the questions I have about Sam's issues.

The questions I have about him are much less scientific though, and much more nebulous. If we make the wrong choice, it's not like we can just erase what we've already said or done -- just change our minds again, say oops, and move on. So I'm probably not actually asking for feedback* as much as I'm finally putting this out there: I have no idea what the hell I'm doing.

* If anyone who has gone through something similar has any ideas, please feel free so share. I can always put my email address in a comment and delete it if you want to stay anonymous on my site.

The world catches on

It is finally striking me how small Sam really is. Now that we're moving back into fall attire, and Sam is solidly a 24 month waist, I realize I'm rolling pants up three and four times. When they come unrolled and drag several inches below his feet, he'll sit down on the floor, crying out in frustration: "Mommy! Fix my pants!" If he has a choice, he opts out of pants altogether. I can't really blame him.

At least now he still has the 24 month option. I figured out with Maya that 2T is a longer, more slender fit, where the 18 and 24 month pants are more robust in the waist and shorter in the length.

I finally have embraced the fact that having a son with Metaphyseal Chondrodysplasia, Schmid type means I have to learn to sew. I will need a sewing machine, and soon. I don't want Sam to be picked on for having to roll his pants four times.

I'm not the only one who has noticed there is something different about Sam.

His gait is already earning him attention from the bigger boys at Maya's school. In fact, on a day that was already tough for me, two little boys looked at Sam and began mimicking his limping waddle, and when we began to leave, one meanly jeered, "Yeah, GO!" and waved his arm like he was throwing an imaginary ball toward the front door.

I stiffened, trying to refrain from going psychotic on these little 5-year-olds. Two nearby teachers were talking -- the classes were in transition and I know they were trying to work out the new system. So I said loudly, "Oh, that's not nice. You remember what it was like to be the little one."

Mrs. P, who turned out to be Maya's new, very sweet teacher, snapped to attention and said, "Who wasn't being nice?" The two boys snickered.

I just opened the door, lifted my head and walked out behind Sam, who had actually just seemed thrilled that the bigger boys were playing with him, in his mind.

It makes me insane to think of anyone teasing my kids, particularly for something out of their control. He didn't realize it that day, but the day will come that he does.

I think it was the same two boys that had also made fun of Maya's brother's "ugly face and head" one day last year. Mrs. L caught that one, and let me tell you, I wouldn't mess with her. She had those boys over at her side in an instant to reprimand them, and I loved her so much at that moment.

I feel like these kids are noticing what adults have too but can't quite place -- yet -- and that is that Sam has a form of dwarfism. Despite everyone saying Sam probably won't be different, I see that he already is.

According to the geneticist's note:

"Their (The endocrinologist's) note mentions the fact that he clearly had short stature, with a height of 76.4 cm, which had fallen from the 25th to less than the 5th percentile. In the meantime his head circumference of 49.5 cm was maintained at the 70th percentile, a relative macrocephaly. His weight 11.5 kg was holding at the 10th to the 20th percentile."

These small boys had picked up on the fact that Sam had a waddling gait due to the Coxa Vara, and that his head was not quite in proportion with his body. It astounds me that such young boys would be able to discern differences like that and hurl them out as a reasons to ostracize my sweet little boy.

Regardless of what anyone has said, he has a form of dwarfism and it is increasingly apparent. I know people mean well when they say people might not notice, or that it doesn't matter. Of course it doesn't matter, to me, I love Sam just as he is. He is awesome and resilient and hilarious. But the reactions from the rest of the world are beginning to drive home that we should raise Sam with this understanding so he can handle ignorance with grace and humor.

Now is a good time for me to put out there something I have heard and never understood. I have heard people say that they would not change their children, regardless of the situation, because that is what makes them who they are. I'm reading a book now called Expecting Adam, and author Martha Beck says she would not change a thing about her son with Down Syndrome. I didn't get it, but now I do. Sam is delicious -- he is precious and his strength is remarkable. If he falls and cries, you know it hurt, because 19 times out of 20, he pops right back up and blurts out "I OK!" before you even have a chance to ask. That's not to say that I don't knot up inside when he can't walk up average-sized stairs, or jump. I might take away the pain if I could, but I wouldn't change his stature. I would change how the world reacts to his stature.

Though I don't mind that he is different, other than how it affects him, I don't want to pretend that he is the same. I don't want to feign a reality that he can't relate to his own experience. I understand we're all different, and all the same, but some differences are more immediately apparent than others.

I also don't want to dwell on the differences, or let them define who he is. As I've written before, I just want him to be proud of who he is. I know this isn't easy while growing up, and people with far more marginal complaints beat themselves up over not being blonder/darker/prettier/skinnier/bigger/taller/cuter, or whatever, despite having physical health and capabilities that others would love to have.

I guess my biggest wish is that the world wasn't so scared of or voyueuristically fascinated with differences like dwarfism. With Metaphyseal Chondrodysplasia, the form is much slighter than other forms. That means Sam could end up being 5'6" or he could end up 4'6" on the shorter end. The geneticist had assured me that he would be short statured but in proportion -- though when I read her note, I realized, that's relative to others with different types of dwarfism. Clearly, he has different proportions than average-statured kids.

These boys have made me think about something I read on LPA's Web site in what I call the "Welcome to dwarfism" handbook.

It had mentioned that kids with dwarfism often benefit if their parents send materials in for classmates so they can understand it, and so they feel free to ask questions. That leads to knowledge and understanding and ideally, makes teasing less likely. I had thought maybe we wouldn't need to do that since Sam might end up of nearly average height... maybe we shouldn't draw unnecessary attention to him. But if people will notice anyway, maybe we should prepare everyone. And if he ends up on the smaller end of the spectrum, people will notice, he will notice. But on the other hand, I don't want to make him self-conscious about something in addition to his physical limitations if he doesn't need to be.

As usual, I go back and forth and I guess this falls under the all-encompassing heading of: Things to Figure Out As We Move Along Because There Are No Easy Answers.

Greeting the world

It's amazing how different it feels to hear certain things knowing other things.

For example, when the woman sitting next to me on the airplane to St. Louis told me she believed Sam would be tall, I probably felt differently than I would have before I knew Sam has a form of skeletal dysplasia that will likely keep him between 4'6" and 5'6".

Before learning that, I probably would have laughed. Nobody in my family is very tall, really, and Sam's height percentile has steadily dropped since he was born. Not really surprising to my 5' 7" husband Jim and me; we had just assumed we would have smaller kids.

But as this lady looked over at the row of three -- Maya, Jim and Sam -- she asked me Jim's height, and sagely informed me:

"Your son will be taller than him. I can tell. Look at his hands -- they're big for his size."

I was reminded of the puppy paw theory and didn't realize it applied to humans.

I smiled at her. She was a very nice lady. I didn't say anything.

"You can always tell when you look at a toddler's hands how tall he will be," she continued.


I didn't tell her that with metaphyseal chondrodysplasia, Schmid type, (and finally a pronouncer, now that I've got it: muh-taff'- uh-SEE'-ul con'-dro-dis-PLAY'-zsa) Sam's hands would probably look larger in proportion to his arms (and legs), because his limbs are disproportionately smaller than the rest of him. Not much, but a bit. That is the case with most types of dysplasia, or at least, that's my understanding.

I am used to people commenting on his waddling gait, which is increasingly pronounced the older he gets. Not because it worsens, but because it is more obvious as he grows that it is more than just a toddler gait, and more glaringly asymmetrical. It earned him the nickname "The Mayor" from Jim early on, and that name caught on. It wasn't just his swagger, it was also his genial nature and outgoingness. I would always nod and agree enthusiastically when people would giggle and fawn over him. I still do typically.

But some days, it feels different than it did prior March 16 when we first saw the pediatric orthopedist and found out he had coxa vara. Now some days I don't grin quite as widely when they talk about his waddle, though I still agree, it is ridiculously cute. But I feel sad too because I know it will cause him pain after his major operation on both sides and six weeks in a body cast, and I know he has to work harder than other kids to move. Certain things, he just can't do, and I watch him struggle and offer gentle help.

I try my hardest not to ever let him feel my sorrow; I think that would feel terrible as a child, and he is so happy and bright. He doesn't know anything different, and he's tough. I don't let it out, except occasionally after the kids are in bed. I've heard different theories about this, from people who say not to ever get down because kids feel that, to people who say you have to mourn exactly when and how you need. I think I'm somewhere in between, but fortunate to feel positive most of the time.

The rest of the family rarely calls him the Mayor anymore, probably because they feel the same sense of sorrow that he has to struggle at times.

I am also accustomed to people gasping or trying to feign non-surprise when I tell them that Sam is nearly 2 and a half. Or they will stare open-mouthed when he starts talking. He is eloquent for his age, and he certainly is eloquent for the age people assume he is. I am guessing that's around 20 months or so, considering his gait and his size. Before I knew about his genetic condition, I just figured it was his hips combined with genes... though, looking at pictures of Maya, I realized she definitely had more of a kid stature, less toddler stature, by this age.

But the airplane lady was the first to openly comment on his height specifically. Oddly, she was there to inform me he would be tall, not to mention that he is small.

Reflecting on this later, I remembered back to one of my cousin's softball game. I was probably about 11 years-old, visiting the same family in St. Louis we were traveling to see that day, and a little girl started talking to me in the stands. She was really cute and funny, and I asked her how old she was. She said she was eight. I remember being stunned because she was so clearly short for her age, that I just started talking before I could stop myself.

"You're really tall for your age," I blurted out.

The second I said it, I thought, "WHY WHY WHY WHY? You couldn't just keep quiet?!" I don't know why I chose those words. She was obviously small, but knowing it would be rude to say "You're really SMALL for your age," instead I said "tall." It's like I couldn't stop it from coming out....

And to my humiliation, the little girl shouts incredulously up the bleachers: "Mom! HEY MOM! This girl thinks I'm TALL for my age!!!"

I turned about 100 shades of purple, I'm sure. I stammered something about how second grade was so long ago that I couldn't remember how tall people were....

It wasn't a big deal. We hung out the rest of the game. Because we only visited occasionally from whatever base my dad was stationed, I never saw her again. I had forgotten about her until right then.

I think sometimes we are surprised by things we see, such as a person who is much smaller than we expect, but the urge to comment to the contrary is very interesting to me.

The airplane lady did not comment about Sam's current size, but on her idea of his future size.

I commented that the little girl was tall though she obviously was not.

In both statements, there was the idea that height was ideal, lack of it was a shortcoming. (That's not meant to be a pun, it's an example of how even our language is wired demonstratively where height is concerned. I'm sure I'll write an entire blog around the language of tall and short one of these days.)

It is interesting to me also that people feel at liberty to comment on stature. As as my new friend Pen put it, would they comment if our children were overweight or in a wheelchair? Maybe. I don't know. But in the cases I mentioned, the comments were contrary to the truth. I think that is really based on the fact that height is valued in our culture, no matter what we say or think.

I remember when Maya had increased in growth I had reported back to the family with pride. She had always been around the 5th percentile, and shot up to the 25th. I never minded that she was small, but for some reason I felt accomplished that she had caught up, so to speak.

I remember when she was a baby, so many people would always beam when they told me their baby was in the 90th percentile for height. (It seems like too many are in the 90th... if it's that common how is it the 90th? Or maybe we just know people with really huge babies?) I never cared that she was petite, I loved it. She reminded me of a little pixie.

Sam was a big baby, and tougher to hoist. He was born pretty big, and he stayed pretty big until about five or six months, when he leveled out. This did not come as a surprise to us at all; we were surprised he stayed so big for so long. But I remember hearing myself tell people where he was on the growth charts (down to 25th, or down to 10th) and people would reassure me, "That's OK. You knew he probably wouldn't be a big kid," as if I had said it with sorrow. And I really had not. While I did report with pride that Maya had gotten bigger, I never felt remorse or shame at having a smaller child. But still, I felt sometimes people would console me.

Some of this is evolution-based... just 100 years ago size did play a much more important role in our ability to survive, particularly for men. Today there are studies that show that shorter people typically don't make as much as taller people. These are all the studies we've been reading about white men versus any other ethnic group or gender for years.

The thing is, people have expectations and preset notions of what is ideal, particularly where physical attributes are concerned. Whether fair or not, whether we ignore them or not, label our children or not, they are going to infiltrate our lives. I want to handle every comment with grace and unflappable ease. Rarely are such comments mean-spirited, but even those should be met with calm -- they are made by people who don't understand and fear the unknown.

This is crucial to helping Maya and Sam realize that it's OK to be different. This is one of the main points made in the LPA (Little People of America's) sort of introductory, welcome-to-our-World handbook.

Some days maybe I'll feel like explaining a little bit. I have already given a sort of modified version: "Yes, Sam has a type of dysplasia that causes his bones to grow differently and create that really cute waddle, though it will require surgery to correct." I have had people debate me over the need for him to have surgery, and I mean fairly random people who have little or no experience or knowledge about any of this. It gets exhausting.

Some days, I won't be in the mood. I'll be tired, I'll be stressed, I'll be cranky or overwhelmed or overextended like most moms, whether they face these or other challenges. But I'm going to do my best to react like I did to airplane lady....

Just smile and say nothing.

The Beginning - discovering Sam's skeletal deformity

It was three days after Sam's second birthday, and we were headed to Newton-Wellesley Hospital.

At a glance, nobody would suspect Sam of being anything other than a totally healthy, intelligent and hilarious toddler.



We were referred to Dr. Albright because Sam's waddling gait had been nagging at me, as well as the fact that he wasn't climbing with his feet or running. This was all normal at 18 months, but it occurred to me that he was almost two. I had always been casual about my babies reaching milestones, but was suddenly struck by the fact that he seemed to have a harder time walking than other kids his age and was behind in several gross motor areas from the waist down.

On top of my concerns, two people on separate occasions had approached me very gently and kindly, about his walk that earned him -- along with his outgoing demeanor -- the nickname, "The Mayor." "Have you had his hips checked?" they asked.

Dr. Albright noticed his gait too. He also noticed other things, like limited range of motion in his legs, an asymmetrical swagger, and mismatched fat rolls on his kissable thighs. He ordered X-rays, which we took right then. Newton-Wellesley Hospital has a great children's section, where Maya could be in a small, private, enclosed waiting room while I shut myself in with Sam during radiation.

I remember glancing over at the monitor that instantly registers X-rays digitally. My heart sank; even with no medical background, from across the room, I knew his bones didn't look right.

The lab tech sent me home, even though I was sure the doctor had told us to wait. I took the kids to lunch at the cafeteria, drove home confused, and put my exhausted children in bed. They had been so good all day, with not-yet-4-year-old Maya entertaining 2-year-old Sam and singing to him when he would protest during the exams, though he mostly smiled and giggled.

The more I thought, the more sure I was Dr. Albright had told us to wait. So I called the hospital. Dr. Albright got on the phone impressively quick, which caused my stomach to knot up again.

"Can you come back? The X-rays are abnormal, and I'd like to talk to you in person so you can understand." he said. "How fast can you get here?"

I pulled the poor kids out of bed and raced back to the hospital, my mind whirling. What is wrong with my baby? I wondered, but kept outwardly calm so as not to upset Maya and Sam more than they would be spending the day in a hospital.

Dr. Albright spent a lot of time with us, explaining that Sam has a very rare bone disorder called Coxa Vara. It generally affects children on only one side, not both like Sam. It means the tops of the femur bones are, instead of at an obtuse angle, at more of a right angle. There is a more complicated explanation, but this one is more visual for me, though not completely technically accurate.

Usually it is congenital, or present at birth, though some vitamin deficiencies can cause it. Dr. Albright didn't think that was the case, but he had to take some X-rays of his wrists, and more of his hips, to be sure.



This is not an X-ray of Sam. Sam has Coxa Vara on both sides, which is demonstrated in this X-ray in the left hip/femur (hip on the viewer's right). The right hip (on your left) is a "normal" hip/femur.


It's safe to say I was completely stunned. I had initially come to this appointment expecting the doctor to tell us it wasn't a big deal ... maybe a referral to a good physical therapist. About six hours and a failed nap later, I felt tears needling at me, but gulped and forced myself to become fixed on Dr. Albright's eyes and focus on what he was saying. I had to make sure my kids didn't see me react and reflect what was in my gut right then, and I had to take all this in to tell my husband Dave, who was still at work.

We went back to radiology, and Maya again sat quietly, coloring in the waiting room, while I sat with Sam. After each image, I ran out the door to ask Maya if she was OK. She had to go potty, so I took her into the little bathroom, while singing Wheels on the Bus loudly enough for Sam to hear in between X-rays. The lab tech was amazed at how still and happy he was.

Dr. Albright came in to make sure he got the right pictures, which made the lab tech very nervous. At one point, she forgot to make sure Sam's parts were all covered, so I piped up before she could push the button. We may be getting lots of X-rays, so let's make sure the boy can still have children if he chooses.

He wound up having an abnormality in his wrists, and Dr. Albright referred Sam to an endocrinologist to make sure he didn't have Ricketts or some other absorption problem.

In the meantime, Dr. Albright told us to prepare ourselves for major surgery on both sides, a day-long event, that would land Sam in a body cast for six weeks. That was unless his bones changed drastically in three months, when he would X-ray them again. The initial surgery would be followed by a second to remove the metal from his body.

And I sat still, thinking, this surely could not be happening to my child.... surely, there was some mistake....

This was just the beginning to a long and jerky path that would jeer out of direction every time we got a handle on what we thought was true....

It has gone from a correctable skeletal deformity into the possibility (or probability, according to the geneticist two days ago) of Sam having Metaphyseal Chondrodysplasia, Schmid Type, a disease associated with dwarfism, and one that could entail several surgeries.


Every day we're hurled into something we didn't expect, and as a reporter and writer and mom, I'm making it my goal to find anything I can out there to help us along the way.