URL change

To all who have this bookmarked, please note the URL change.

It's now SamandMaya.blogspot.com.

Sam's next surgery will be Jan. 20. A new post is coming soon.

Hollow bones

“I wish I could see Mr. Sun, or, Father Sun

I wish I had hollow bones

so I could fly in the air

next to him

I want to be a bird

I want to be iridescent

so I can be a sparkle

in the sky”

• Maya, June 8, 2010

I wonder why it seems I hardly ever get my happy blog out.

Sam has been walking for weeks, beginning two weeks from when he got his spica cast off in the ER. He’s doing really well. That’s what Dr. Albright said when we went for X-rays at Mass General. He is way ahead of schedule.

“He’s got good bones,” Dr. Albright told me.

He also told me that when he goes in to remove the metal brackets in each leg -- which were added after each surgery to correct coxa vara on both sides -- he will want to put Sam in a full spica cast just to be safe. For four weeks.

We’re looking at January for Sam's third surgery, one year after the first surgery on his right leg.

Sam in his last spica cast, known as a "one and a half" since only one side went down to his ankle. The next cast will be a "full," as both sides will go down to both ankles. Maya, Sam, Dave (not pictured) and I had fun at this wheelchair-accessible playground in Sudbury.

That was quite a blow, though I have to say it was a tiny bit of a relief too. Dr. Albright had told us in the Newton-Wellesley ER when he came to personally remove Sam’s cast on a late April Friday night that we’d have to keep him off his feet for six or eight weeks.

“How do you do that with a 3-year-old?” I remember asking.

I don’t know for sure, but I think when he’s looking at the size of Sam’s bones at each X-ray, he is considering how small they are and how big the metal is. The brackets will leave some big holes in those bones, and one fall, or one kid falling on top of him, could break it and would require another surgery and more titanium.

And obviously, Sam is immune to pain and sitting still, even after two major surgeries and weeks in two body casts. He just is determined to become mobile again the second those casts comes off.

Dr. Albright wants to be safe.

So I showed Sam his bones on the screen. I showed him the before picture, where his femurs are angled severely. In the second X-ray, I showed him how much straighter his legs were, with a ‘typical’ angle, and pointed out the metal. (Unless I take a picture of our X-ray printouts, there's no way to show an example. I think the technology is that new, and the condition is that rare.)

“That’s really cool!” Sam said.

I agreed, it was cool, and reminded him how much like an X-Man he is.

I figured it was as good a time as any to tell him what was ahead, since at least he had a visual and could understand.

“Buddy, I know I told you that you wouldn’t have to be in a cast again, but Dr. Albright has to take that metal back out, and just to be safe and keep those legs strong, he’s going to go ahead and put you in another spica cast again. OK?”

“Alright,” he said, rather brightly actually. “Is that today?”

“Nope, not till winter,” I told him, making sure to match my tone to his.

“OK! .... Look! That’s my BONES!”

It didn’t even phase him.

On the way home, we listened to The Pixies (Doolittle) really loud and I cried a little behind my sunglasses, just knowing we had another one ahead, even though I think the reasons are good. (As loud as hell/ a ringing bell/ behind my smile/ it shakes my teeth...)

Then I’d turn to look at Sam, and he would give me this huge, lit-up grin, like nothing bad was in his world. Nothing bad.... He’s such an amazing kid.

Maybe I haven’t been taking this for what it’s worth. It’s been easier to just live and not acknowledge the day-to-day differences of our lives.

But grasping that this isn’t just one isolated surgery, it’s repeated surgeries, has created the dawning that there are certain things I have to address. We can't deal with the surgeries, and put off dealing with the differences in our lives later. This is just a way of life now, it’s not a fluke. I feel like Maya ... I want to have hollow bones.

But all my bones are so dense that I feel every little twinge way down in the core of them all, in each crevice of each bone in each piece of cartilage in each little appendage. I weigh about 1,000 lbs. I just think about potential pain for him, and feel the old ulcer (I think) twitch. (Whatever it is, hopefully Monday's endoscopy will bring some results.)

Until yesterday, I hadn’t broken down in a while.

My close friends in Ulster County talked to me about this, said this might be the main cause of my stomach distress, and I agree. There hasn’t been an outlet. I explained, that you really have to be on for those kids, even when there are worlds behind your eyes shattering, you have to look solidly ahead, for them, and nod calmly, take a few notes, give your kids a book to read while you listen to the doctor, talk in chipper voices when they’re screaming in terror or pain. That’s just the way it is.

I suppose, as I was told last weekend, I have to find more time for myself to break down, and thank you friends and mountains for tapping into that quiet place that knows what is best for my self ... it’s why I could allow myself cry in the car. Sam had no inkling; I felt better than if I hadn’t.

I think shoving all this down has kept me from realizing some big reality in our future too -- if Sam is going to live as a typical kid his age, we are going to have to tinker with things to see to it that he can interact with the world the way a typical 3-year-old should.

The surgeries have put him up near the first percentile for height, but until then his growth had continued to decline below the charts. It makes sense; his skeletal dysplasia (Metaphyseal Chondrodysplasia, Schmid type) is associated with dwarfism, though his projected height is between 4.5 and 5.5 feet.

We’re going to have to find creative ways to rig the slider so Sam can reach it until he’s tall enough. I have some ideas about that.

We have to put a low towel rack in the bathroom so he can dry his hands, and we have to add height to his stools so he can do things independently, like turn the water on to wash his hands or reach countertops. We need more step stools, some with two or even three steps.

I’m even thinking of reducing the heights of stairs out front so he can move up and down them without using his knees. Now he either has to get wet if it’s raining, or I have to carry him. Typically, I carry him.

He wants to do things himself, and if his world were geared just a touch smaller, he could. I want to empower him to not need me. As much as I love him trusting me to be there for him, I have to make this all work for him.

If we can give him the tools he needs to be independent as his age would dictate, he might not notice for a while that he’s smaller than many others. It’s not that I don’t want to celebrate his differences, I do, I just don’t want him to realize obstacles as a result of them. I definitely don’t want him to get hung up on any of those obstacles should they occur.

Really, he is such a happy kid. Right now he doesn’t notice that kids are taller than him, partly because he’s usually the youngest in any given situation. He and Maya are both so extraordinary. I would even say they sparkle, though it worked better in Maya’s poem than it does here. What can I say? My 5-year-old already writes better than I do.

Old pros

We’re getting a little tired.

Sam is trying so hard, and he’s been hurting so badly. We got his spica cast off two weeks ago today at the ER. Dave and I were supposed to have a date, but instead we took our little boy to the emergency room. His orthopedist met us there (I LOVE HIM!) and removed his cast. Sam screamed complete terror and pain, and I held him, and held it all together, and so did Jim.

“You’re a good boy,” I said cheerfully, hugging him as he bawled and howled. “It’s OK! It’s almost off, it won’t hurt you, you’ve done it before, you’re almost there, you’re so strong, you’re so brave, I love you so much, I’m going to give you a huge present tomorrow, and guess what? Uncle Larry and Aunt Cristy and Jack are coming tomorrow!”

It was an steady babble of anything I could think of to calm him down.

After ten minutes or so, before the air hit his body, he actually did get distracted by the idea of the Beemer visit, and by a Child Life specialist who brought in a noisy Thomas book. (I also love those Child Life specialists. Twice they’ve saved us in the Newton-Wellesley Emergency Room, once with each child. Twice the same specialist saved us at Mass General as we strolled Sam into surgery.)

We’re used to this now. We’re used to a toddler screaming in pain and terror, and I’m comfortable now doing my song and dance to make him feel as comfy as possible after his sixth round of X-rays at 10 p.m. while he’s hurting and just wants to go to bed. Now it’s not even an effort to hold the tears back, now they just don’t come because we know that being strong is the best for Sam. If we trick even ourselves into thinking this is all OK, yeah, it’s tough, but we can do this, it's bound to make him more at ease. And we can do this.

Before we went to the ER that night, Maya started to cry.

“Are you going to be gone a week again?” she wanted to know.

We hugged her, and told her no, we’d be there in the morning when she woke up. Thank God Chris was in town, or she would’ve had to accompany us on this late-night excursion. It tugged when she asked that question, but I didn't have to fight any tears.

In the ER, the X-ray attendant told me how helpful it was to have me in there, when many moms exacerbate the kids’ fears. “We’re old pros,” I told her.

I'm toughened on one hand, so it's easier to keep it all contained. But I am at the same time all raw and exposed. I’m like a crab in its shell and at the same time right after it sheds, simultaneously hardened and ready to do whatever it takes to make it easier for my kids, while also weak and vulnerable, with fleshy exposed parts that could be fatal if somebody so much as scratched them.

Just seeing Sam crawl around tonight, so frustrated, but so determined, wore me down. He’s such a great kid, and it’s getting hard to see him so frustrated by the pain and the inability to walk for a second time.

He was shouting angrily from the couch this morning, no he didn't want to go outside. He wanted to just sit on the couch. I finally gave him the option to take Tylenol himself or I'd hold him and give it. He took it, then just looked at me and said, "Mommy, I still can't walk."

"I know buddy, but you will soon. You're getting stronger, and I know you're sore from practicing so much yesterday. Soon. Just keep trying, but if it hurts, rest."

He's been so fussy the past two weeks. Of course I’ve had deadlines, and a work error that more took work to correct, and plenty of worry on my part. Dave has had a tough couple of work weeks too.

Sam wants me near him always, he wants to be held. He tries to strengthen his muscles, and last week began crying when I told him to take it easy as he tried to jump holding on to his spica chair. He thought I was chiding him, when he expected me to be so proud.

I am proud, but that cast came off really early after his second surgery, a proximal femur osteotomy on his left leg this time, to correct the coxa vara on this side. Four days made such a difference, and he was in such pain. He began crawling less than 48 hours after the removal, and cried for a week as a result, but refused medicine and refused to admit anything was wrong. He had a canker sore, and stopped eating. (But at least we figured out why his appetite had dwindled, and it's on the rebound.) He fell yesterday and hurt his hand. Still, he refused Tylenol. Today I didn't give him the option.

But at this point, we have got to be on our way to coasting. I keep thinking we'll turn that corner every day. Today has got to be the day, and it's promising thus far. Sam's playing, the medicine helped, and he continues to work his legs.

When taking the kids to drop Maya off at preschool on Tuesday, one mom said, “You guys are always smiling! You’re so happy! After all you’ve been through. You’re awesome! You’re such a great mom.”

This comment couldn't have come at a better time. Maybe she sensed that we were all wearing a little thin. Or maybe we just all genuinely seem happy. I hope that was it. Basically, I think we are happy. Just a little thin.,

Her comment was so appreciated at that moment, I had to measure myself to make sure my emotions went one way instead of another. I could've beamed with pride, or just as easily wept.

Being able to control which emotion shows itself has gotten easier, but the ability to do this has taken its toll too. I thanked her, and told her this compliment came at a crucial time.

“At least I’m faking it well!” I joked. She told me if I needed help, she'd be there.

I’m sure Sam feels me getting worn down, and I’m trying hard to stay strong so he can feel comforted by me instead of uneasy.

He’s always sending repulser blasts everybody’s way and saying he’s bad. “Sam can you pick that up please?” (Repulser blast noise and hand.) It’s funny now, but his whole attitude seems different. Maybe it’s just because he’s three. I do know they get possessed around this age. But I also think he’s finally frustrated by his situation and lack of mobility.

Sam’s cruising now, and last time, it made me so happy to see him hit this milestone again. It still makes me proud, and I’m encouraging him more now than last week. But in all honesty, seeing it a third time when he’s three years old hurts.

Knowing that he will, as Dr. Albright finally prepped us two weeks ago, be immobilized yet again when they remove the metal from his legs, has me down. He won’t be in a body cast, but it’s six weeks of little movement, no running, jumping, climbing. I’m not sure how you tell that to a 3-year-old boy. We will have to stay in the hospital overnight again.

Maya wants to go to playgrounds, but I just feel too awful bringing Sam there when he can’t even walk. I feel awful for Maya, who just wants to play as we normally would on a lovely spring day. We go outside and I'm CONSTANTLY working to find something fun they both can do.

Yesterday I pulled their play kitchen out of the garage and cleaned it, and their shopping cart filled with play food, and put it into the “cafe” part of the swing set Dave built. I opened some sparkly cider and we sipped it out of plastic cups while Sam and Maya prepared me an array of foods at their cafe. We must have done this at least for an hour.

I dropped $40 on new games at Target, money well spent just because it was something engaging we all could do together.

But still, they’re watching too much TV and I’m not engaging and playing the way that I want to. I’m trying now to stop the guilt by changing our habit of flipping on the TV after a moment of frustration from any of us. We’re reading more. My house is filthy though, and we rarely eat before 7:30.

Like I've said a million times, it could be so much worse. But right now, I fluctuate between being proactive and strong to being a sludgy stagnant puddle. More than ever before in my life, I lack motivation when I need it most, and I just want to withdraw.

But then Sam kisses my finger, holds on to me, tells me I’m such a sweet mommy. Tells me I’m a precious mommy. Maya smiles at me, kisses me, tells me I'm the best mommy in the whole world, and also figures out a new way to race so a crawling Sam can tie with her each time.

“We both won!” she’ll shout, and he laughs, so proud and thrilled.

They make it impossible to withdraw, or to stop feeling altogether.

They are so funny and awesome, it helps, and makes me feel kind of guilty even admitting to all this. Sometimes I don’t even want to write this down and share it with the world because I don’t want to feel like I’m complaining. But that’s exactly what I’m doing.

Or maybe it's not complaining, so much as venting. I know other parents have to feel this way, even if the challenges are different. I had put a status update on Facebook exalting Sam's first post-cast bath. He had been so happy. One mom commented how strong and brave we all are (I totally feel like a fraud when people say this) and how she shouldn't take something as simple as bathing her children for granted.

To which I responded, "We're not saints, we'll be taking it for granted in two weeks when Sam is kicking and flailing and doesn't want it ... it's what I tell people who think I'm doing a special or good job ... the reality shifts, and then it shifts back. Each reality comes with challenges. None is bigger than another."

Everyone goes through their parenthood challenges, and maybe it's not as obvious or overt as this one, but there's always something.

I think it comes down to this: I know I have to be strong for my family, but I get worn down seeing their frustration and pain. I try to keep things light when they’ve just had it, but sometimes I feel like I’ve had it too ... we’ve been so resilient to this point, but all are beginning to wear thin.

Knowing there’s more to come in the six months just when we thought we were all done, a whole new round of surgery, another hospital stay, more immobilization .... I’m going to try not to think about it yet. I knew the metal had to be removed, but I guess I hadn’t considered the magnitude of that surgery.

I think if Dave and I could just get out to a movie and dinner to recharge, to actually talk, it would help. Anyone know a good babysitter who doesn’t charge money?

Overwhelmed ...? Understatement

I'm going to do my best here not to sound as beaten as I feel.

Sam's surgery is a week from Thursday.

We've all got a cough that has lasted for weeks, and I think carrying this cold, or swine flu, or whatever, has taken its toll on me.

I think I will have to take Sam back in to make sure the antibiotics kicked out his double ear infection; he seems to be feeling lousy again. They won't put him under unless he is totally healthy.

Not only that, we all have a ton of appointments before then. I have an EKG (echocardiogram) and an MRI scheduled for tomorrow. The MRI is to look at my head and see if the big fall I took a year ago Christmas Eve is the culprit of these intense stabbing headaches I've been dealing with for the past 13 months.

The EKG is because the doctor heard a heart murmur and said that this can sometimes cause aneurysms. Don't you just love to hear that word at a doctor's appointment? I doubt this is the case. He told me aneurysms can sometimes cause headaches. It was my understanding that aneurisms caused death.

On Thursday, I'm seeing a neurologist and my primary care physician to go over all of this.

On Friday, Maya is going for her MRI and EEG. This is because the Monday before the New Year, Maya came into the kitchen woozy at about 7:30. I was out with Miles, Jim was chopping peppers for me after his dentist appointment. I wasn't out there five minutes when Jim shouted to me that something was very wrong with Maya. I ran in, and found him holding her. She was drooling all over the place, to the point that it was bubbling out of her mouth, and she said she had a headache.

She asked, "Why am I talking funny?" in this thick slurred voice. I thought she might be having an allergic reaction, but couldn't figure out the drool. I looked at her tongue to see if it was swollen; it wasn't. She seemed dazed, but not completely out of it as if she were having a seizure. There was no fever ... just pale skin with some splotches on the right side. The whole right side of her face was drooping as if she'd had Novacaine.

I took her to the ER. I didn't call an ambulance because she seemed to be coming back. I actually let her eat first, probably not smart, but she kept saying she was hungry. She seemed OK. Not quite herself, but pretty good, actually jumping around at one point.

We got there at about 8:30 p.m., and they did a CAT scan and a urine test. I assume the latter was in case we had some terrible drug in the house, and they also mentioned blood pressure medication. But that didn't fit because her blood pressure was fine. They pricked her finger to check her blood sugar, which was fine, and thank God the CAT scan came back clear. I guess the initial concern was a brain tumor or stroke. We got home at nearly 2 a.m.

She was such a little trooper. She picked out a little toy for herself, something they do in the pediatric ER, and then asked if she could find one for Sam. She took her time looking for something he would really like instead of just finding something she wanted.

We got in with this great neurologist, and I patted myself on the back thinking it was my persistence, but quickly learned that Maya's pediatrician is in the same practice with the neurologist's daughter.

I liked him instantly. He was was confident, but not overly so, and he was very connected and great with kids.

I had thought he was leading me toward questions that related to her sensory issues, and began to wonder if there was something there, but he didn't think there was any spectrum behavior at all. I really didn't think so either. I'd had a little scare a while back, but now realize Maya deals with stress by sort of disconnecting. We'd had a bout of that before we moved, but then as soon as we were in the new house, she was back to herself.

The theories now are: It could have either been a seizure, a migraine, a fluke in her neurological wiring that would cause episodes like this one, or just a fluke that will never happen again. I'm really liking that last option.

Last night I had a dream that Sam was going for surgery and I couldn't stop crying. I was scaring him by bawling so much, and I couldn't make it stop. I stopped at a hot dog stand, and cried when the guy at the counter said, "I see your lips moving but I don't hear a sound!" I cried at Trader Joe's today when I saw a mom kiss her baby. I cried when I made the appointment for Maya today and I cried while hanging out with good friends last weekend, though granted that was after having champagne.

For the first time, I really feel like I'm cracking. I really just wish it wasn't so close to when Sam was going for his surgery on the right hip. He needs me to be strong, and I'm just hoping I can do that for him. Maya needs me to be strong, during her tests and during this surgery and recovery too, and Jim is counting on me to be strong. I'm here all day with the kids, I can't check out.

(Fortunately, a couple days later, I'm feeling more myself. Praying it lasts... Also, I don't have an aneurysm. Yay! Time to explore TMJ.)

Two surgeries

Suddenly it struck me that we have our pre-op appointment on Wednesday. Then we'll get an actual date for surgery, and this just makes it all more real.

I had mentioned bringing Maya to the doctor one day a couple of weeks ago to check out her cough, and Sam told me, "I not want go to the doctor Mommy. I not want get fixed."

***

I wrote this before the all-day appointment yesterday, during which we assumed we'd get a date for surgery.

We did get a date. We were also told by Dr. Albright, Sam's pediatric orthopedist, that he would prefer doing one side at a time. That means, one major surgery to correct the coxa vara in his right hip lasting six hours, followed by six weeks in a spica (body) cast, followed by a month out of the cast ... then back to the hospital, another major surgery to correct the coxa vara in the left hip, followed by another six weeks in a spica cast.

Before I go into the very logical reasoning behind this, which I agree with, I'd like to share my Liz Lemon meets Molly Shannon moment with you in the interest of levity ... and also in case any embarrassed moms find themselves in my awkward situation.

Luckily, Jim had gotten off work to come with us. I was so thankful for this because I can't tell you how many times I've done it myself, and it is not easy to take one to the potty while the other is on an exam table. Actually, I have told you this before.

We were waiting in Room 4 for Dr. Albright to come in and give us one date for surgery, and suddenly I realized I was sweating. Makes sense, they keep hospitals very warm for the naked people in there, and it was a little nerve-wracking waiting for the final date, the finalization that yes, surgery is happening.

Suddenly, I realized in addition to sweating, I was stinking. I remembered to get myself dressed, even used a curling iron (what?) on my hair. I got both kids dressed, remembered to bring two types of snack that each of them like (nobody eats the same snack, mind you) juice boxes and several books and toys. I even dug out a couple little Christmas gifts to each of them to give them in the office, a trick I learned long ago that was necessary if I was to have any sort of actual conversation about Sam's medical situation.

But I had forgotten something. What was it?

Of course, it was deoderant!

So of course I start sweating more realizing that I have forgotten this rather important step to getting ready for my day, and of course I don't have a spare in my purse, though I should for how often I forget it.

But then I have an epiphany, and I'm passing it to you other moms out there should you find yourself as scatterbrained and nervous and smelly as me.

Hand sanitizer!

I'm not saying it's the new Secret, but it's better than nothing and it works in a pinch .... so I'm squirting it in my hands and furtively rubbing it under my arms in a very Mary Katherine Gallagher kind of way, but of course Jim notices.

"What are you doing?" he asks.

So I have to tell him.

I figure since I told him, I may as well just tell everyone. In the interest of lightening the mood of the blog.

I'm glad I went ahead with that decision since the news was once again not what we were expecting. I may as well not ever say that in this blog since I say it every single time. I even wrote a whole blog about it. So from here on out, let's just all assume that nothing is ever as we thought it would be.

Dr. Albright finally came in (and I didn't stink anymore) and dropped the bomb.

"I know last time I think I told you I wanted to do both hips at once, right?" Yes, we answered. "Yeah, well now I think I should do one at a time."

I had brought up my concerns about Sam's Metaphyseal Chondrodysplasia, Schmid type, in terms of anesthesia. Because it's a type of dwarfism, I was worried about potential differences in dosage. I wanted him to be asleep for the whole 12 hours but I obviously didn't want him to have a hard time breathing. Wouldn't his genetic condition change how much anesthesia he could safely receive?

I still haven't connected with the anesthesiologist at Alfred I duPont Hospital for Children in Delaware, but want to before I talk to Sam's anesthesiologist because Dupont has so much experience with little people.

Then Dr. Albright started asking us about his size, and whether he'd dropped below the fifth percentile. He is below the fifth percentile; my understanding is that he's not on the growth chart in terms of height. He's in about the 20th for weight.

The genetic condition and anesthesia was a good point, and one that Dr. Albright seemed to already be thinking about. Because Sam has a narrower breathing passage than other people, putting him under for such a long surgery is more risky. (I have read that all people with a genetic condition causing dwarfism are prone to sleep apnea, and so this all clicked into place to me.)

The other concern is potential blood loss. Because Sam is so small, he doesn't have much blood to lose. When the bone is being cut, it bleeds. You never know how much it will bleed until you cut it.

That concern combined with the anesthesia concern was enough for Dr. Albright to want to be cautious and do one side at a time.

And of course, while inconvenient, Sam's safety and health are the only real concerns. Because this isn't emergency surgery, it's considered elective surgery. So Dr. Albright asked us what we wanted to do.

"It seems like you're uncomfortable doing both sides at a time," I said.

"Yeah, I would definitely say to do one side at a time," he answered.

"Then that's what we're doing," I told the doctor. I think we need the surgeon to be comfortable.

I like Sam's doctor a lot. He has spent so much time with us, and yesterday was no exception. He's good at gently guiding us to where we need to be, and there is no question in my mind as Sam grows that early surgery will be best for him. He really is inhibited physically, and he notices it. It's impossible not to notice. I'm glad Dr. Albright agrees with that.

At one point, when we were trying to answer Maya's questions, I told her that after it was all done, Sam would be able to better keep up when they race.

"In fact, he might even be able to beat you in a race," I told her.

I hadn't thought Sam was paying attention, but his head whipped up, and his face had this awe-struck grin on it.

I think that he suddenly got that. We'll have to focus on that when we're cheering him up as he goes through not one but two major surgeries and three months in a body cast.

I've never been looking more forward to July.

Up Down Up Down

There's a Yo Gabba Gabba episode with Jack Black, and he does a Disco Roll dancey dance (which I looked for and couldn't find) and the refrain is: "Up! Down! Up! Down! Up! Down! Up! Down! And roll! ..... And back! .... And roll! ... And back!"

I find this cadence echoing in my head frequently these days, partly because the New Friends episode is my kids' favorite and because I disco with Black like nobody's business. But it's also because one day I'm so completely up -- confident that I'm preparing myself for all of Sam's medical issues around his metaphyseal chondrodysplasia, Schmid type diagnosis and feeling utter confidence that we will all prevail and be fine -- and the next dragged-energy down, totally confused and unsure of how we'll navigate the future.

On Thursday I spoke to the pediatric orthopedist Dr. Maurice Albright about the surgery to correct Sam's bilateral coxa vara, about pain management and the spica, or body cast, for six weeks.

I felt so much better after that conversation. A lot of the answers were the best-case scenario, and that gave me hope. Dr. Albright spending 40 minutes with me on the phone in between patients in the OR also gave me confidence, as well as his steady assurance that he would take good care of our son.

He also consoled me in other ways.

A spica cast didn't seem as crazy and scary as it had before, and a good friend said he would help us build a spica chair for Sam, which is awesome.

I learned that Sam will need two sizes of diapers, one tiny swaddler size (or even a maxi pad, Dr. Albright tells me) to tuck into the cast and a big probably size 6 to go over him and the cast. We will have to try our best to keep it clean and dry ... a daunting idea for a toddler in diapers, but Dr. Albright said most people are able to keep it well enough to last the duration.

He's going to arrange for me to talk to the other surgeon (because Sam is so small and the surgery is so long and intense, there will be two of them) and to the anesthesiologist.

I am also still hoping to talk to the doctor in Delaware at the Alfred I. Dupont Hospital for Children, Dr. William Mackenzie, who specializes in pediatric orthopedics as well as skeletal dysplasia. I'd like to discuss anesthesia, and about pretty much everything, since the biological makeup of a person with a skeletal dysplasia (which is a type of dwarfism) is different from someone who does not have dysplasia.

We will give Sam Tylenol with Codeine in liquid form, so that alleviated my concerns of potentially giving him pain medication intravenously. He will have a general anesthesia for the 12-hour surgery, which will likely be followed by a spinal epidural to ease the post-op pain. He will probably go in on a Thursday (Jan. 7 or 21st) and come home Saturday morning if all goes well.

Dr. Albright sounded confident, but not eager or overconfident. It was just the right balance to me. He was exceedingly patient with my dozens and dozens of questions. Some of them were slightly more inane sounding than others, I suppose.

For instance, I asked if they had clowns.

I think Dr. Albright thought I was joking, but I referenced a story sent by a close family friend that found children were much less stressed when there was age-appropriate entertainment like clowns. Dr. Albright said he would see to it that Sam had access to child life specialists to help with anxiety.

I told him this was important -- the article (which I can't link here because the story was clipped from a paper and I don't know which one) mentioned that parents being present surprisingly did not reduce anxiety levels in kids unless the parents were receiving acupuncture or other calming techniques. (I'm wondering if Valium qualifies as a "calming technique.")

Suddenly I felt a shred of control, just a bit of confidence that I could indeed handle this, all while buying a house. This was on the eve of a follow-up with the geneticist to discuss his metaphyseal chondrodysplasia (meh-taf'-uh-SEE'-ul con'-dro-dis-PLAY'-zsa), Schmid type.

As usual, every single time I get the slightest bit comfortable, things shift.

Here we go in genetics.

It wasn't anything specifically that the geneticist Dr. Angela Lin said that I didn't already know. It was just being there this time. I couldn't get my head together.

We talked about some genetically alarming things that may or may not even pertain to Sam's future. They were pretty much things I knew, like, Sam's chances of passing this to future offspring are 50-50. That is if he partners with someone who does not have Schmid. I wonder if it's the same odds for children by two people with different types of dysplasia as it is if they have the same. They are trying to find out for me. That's about all the detail I'm prepared to go into on that subject, and at this point it is not really what we need to focus on.

We had a brief discussion about the possibility of growth hormones, a topic that makes my insides cinch up and knot. I'm almost relieved learning today that it doesn't seem they will help in Sam's case. I don't ever want him to think we're trying to fix him, that he isn't right just the way he is. If others in the world are too stupid to recognize his greatness because he is of a different stature, I mean it when I say it's their loss. Sam is so wonderful that the people who really matter, who will matter to him, will not see his size as anything but a piece of who he is.

I had an eerie feeling with other doctors in the room, as Dr. Lin explained cues for identifying Sam's condition. I didn't mind this; I'm happy for anyone to be more educated on this, particularly the doctors who will help diagnose such genetic conditions.

But I couldn't help feeling protective of him there on that table, small and agreeable, as they discussed how you could tell that his fingers were smaller proportionately because of the hand creasing.

"Are his toes also out of proportion?" one asked.

Not really, Dr. Lin said, though the big toes were broader than an average bone stature.

I asked if this is why his second toes don't touch the floor when he walks. I know this because even when he's barefoot outside and comes in with little filthy feet, those toes are clean. She said possibly, she didn't know.

It was nothing these doctors did, it was just being the center of this discussion, almost as if Sam was a subject and not my sweet little boy. All of that while running down the hall to check on Maya using the potty... it just made me feel protective, like I wanted to snatch him and say, "Don't talk about his limbs as if they are a novelty!" I wanted to kiss everyone one of his tiny perfect fingers.

I maintain that they conducted themselves with perfect professionalism and friendliness and respect for us all. They obviously like Sam as a kid, who wouldn't? But something about it made me want to take my babies and run.

We left there dazed, as I hustled the kids across the street to get some pizza. Then to Ben & Jerry's for ice cream. And then to ballet.

The kids have been acting up. Last week I believe some things sunk in and stuck that hadn't before, and that ranges from my discussion with Dr. Albright to our morning at the hospital.

Jim and I are trying our best to get them excited about buying a new house (to us, actually it was built in 1949), painting their rooms whatever color they want, and then we find ourselves talking to them or around them about the logistics of Sam's surgery, body cast, genetic predisposition.

It's a whole lot for a 4-year-old and a 2-year-old to take in.

It's a lot for a 35-year-old to take in too.

But we're bumbling along, and I'm trying so hard to do things right by them. I just restarted Being The Other One by Kate Strohm, so I can help Maya along through this. Right now, I think she needs some understanding from us. When I noticed her being a little mean to Sam, not wanting him to play with her (more so than their typical brother-sister stuff) I made sure I asked her later if she was angry at Sam. She said she was, but didn't know why. I told her that it was OK to feel angry sometimes because he is getting so much attention in this. I told her she was a good girl. This seems to have changed her attitude dramatically.

Sam is still consoled by me holding him and rocking him and telling him Mama is here. Maya is getting to the point that she needs more. I'm trying to let them both know that we're all confused sometimes, we are all scared sometimes, but I know we will all be OK. We're a family, and we'll do this, and we'll be stronger for it.

I think all in all, we're doing a fairly good job with it all.

Up! Down! Up! Down! Up! Down! Up! Down!