Anonymous

If there's one blog of mine to read as soon as it posts, it's this one.

Otherwise, you might be a little confused when you see not only has the name changed, but all the names have changed.

The people in this blog will become Maya and Sam. I will become Rachel and my husband will be Jim. Even the URL will change, if it's available, to MayaandSam.blogspot.com. My email address will stay the same so people will still be able to communicate with me. I have contemplated deleting it entirely, but selfishly, I'm just not ready to do that yet.

My son Sam (this will take some getting used to!) is almost three and a half. He's in preschool now, and Sam doesn't know that he has metaphyseal chondrodysplasia, Schmid type, a genetic disorder that is linked to dwarfism. He does know he had bilateral coxa vara, a rare bone condition that was brought on by Schmid. That he knows because he's had two major surgeries, and two osteotomies, each followed by a month in a spica cast.

Sam is starting to realize something though. He's a very smart 3.5-year-old. He sees the look of surprise people have when I tell them his age. He realizes many 2-year-olds are bigger than him. He refuses to let Maya refer to him as her little brother. Yesterday I found him a Batman cape, finally, because he'd been wanting a superhero cape for months. When I told him I needed to pin it up, he ripped the mask off and said, "I don't want my cape anymore. Take it off!" The only reason I could think of was that he was embarrassed about being what he perceives as too small, yet again.

He is also aware of his physical limitations. He knows most toddlers don't need help up and down regular-sized stairs (though he is getting so much better at this after his surgeries) and he sees them jumping off of tall things and landing on two feet. Sam doesn't even attempt this, but he is trying more and more to jump off small things to practice. He is doing so well, his jumping is getting better and better. Before his surgeries, Sam couldn't go down a slide, or if he did, he could not land on his feet. He's doing that now too post-surgery. But I think Sam just wants to be like everybody else.

It's this feeling that has led me to the sinking awareness that I should never have broadcast our real names. So as soon as I post this blog, I'm changing it all.

Sam's geneticist (all the medical names will still be true in hopes it will help others who might need expertise on these subjects) had told me it was important to protect his medical confidentiality, but I didn't listen. I don't know why I didn't listen; I think part of me just never expected Sam to become old enough to have an opinion about this. Or maybe it was just that I fully intended to raise him knowing about his genetic condition and have pride in who he is, just as he is. I still want to do this, but giving a 3-year-old this much information doesn't feel right either.

I've hit a wall again in knowing what to do, and as time passes I get more and more perplexed, to the point of nausea, about how to handle this.

I know I don't want him to hear about his situation second-hand.

I know I don't want to tell him about this too young and have him just be angry and never want to speak of it because he's embarrassed.

I definitely don't want to assume he will want this information out there.

I try to think back to 5-year-old Rachel, and how important size was then, and how everything was judged by how big you were and how fast you could run. I was the youngest in my family too. Adult Rachel often forgets how much that stung sometimes. Some of this is just knowing he is the youngest, and a normal part of that. But I am sensing that some of it is outside the realm of typical, and I always said I wouldn't just pretend all was typical when it's clearly not. That doesn't help anyone.

I know it's too late for some of you, but if the local people who do know our identities would keep this very discreet with your children, I'd really appreciate it. On the flip side, please let me know if people are very curious about his size. It's hard for me to gauge, other than the expressions I see people wear when I tell his age. At the public gardens the other day, I saw one man stare in shock as he heard Sam articulate something so brilliantly (he is verbal even for his age). I saw him nudge his spouse and ask incredulously, "Did you see that little guy talking?! That was amazing!" I don't know if Sam saw, but I'm sure he hears plenty of other comments and sees plenty of other stares.

And that makes my heart sink.

I suppose it's time to contact the LPA ... even if it's just for logistical answers, like, is there an implement that would allow him to turn the bathroom light on, for example, so we don't have to leave it on all the time.

My good friend on the phone last night, we'll call her Jill, said she just gives the talk about how people come in all shapes and sizes, and I love that talk. We have that talk often in our house. How much do you really say to a 3-year-old? Will Sam be angry with me for not telling him always? I just figured I'd raise the kids with the awareness. I go back to my adoption example. I always figured I'd always tell kids they were adopted (if I had adopted, which I didn't) so they didn't have the bomb dropped on them when they got older. But the way we're headed, there will be a bomb.

Will he be scared and shut down if I tell him this young? Will he be relieved to know why some things come harder for him than others?

Right now his favorite book (one I need to buy, we got it at the library) is Giraffes Can't Dance.

Gerald the Giraffe gets laughed at by the other animals when he attends a dance. Gerald has a hard time, he tends to trip over his own feet. Sam falls down a lot too. Gerald can't dance like the others, who all have their own special wonderful dance. They jeer at him until he gives up and leaves the dance.

He's feeling pretty bad when a cricket comes and tells him that he can dance if he finds his own song, and stops trying to dance to everyone else's. Gerald listens to the breeze in the grass, and the cricket's song, and begins to move his own way. The animals gather around him and cheer at the most beautiful dance they've ever seen.

Every time we read it, Sam lights up, and I try not to cry.

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.

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?

He walks again

Sam would stand, wobbly, in full concentration, just like he did when he was 13 months old. Then he would try to go, but his little right leg would buckle, still not used to movement after spending nearly four weeks in his cast.

"I'm OK!" he would say good-naturedly, and climb right back up again. He knew not to try again right then, but a few hours later, or maybe the next day, he'd go for it. I am constantly impressed with his good humor, his coping abilities and just his sheer determination.

The doctors said it would be three or four weeks before he'd start walking around, and then he'd probably drag the right leg around with him.

Last night as I was getting Iliana ready for bed, I heard Jim say, "Rachel?!" in that tone of voice that means I need to get in there right away. But I happened to be getting a rare and precious Iliana bear hug, so I was going to need more than that. "Come here!"

Then I heard, "Mommy! I can walk again!"

Iliana and I both jumped up and ran out of her room just in time to see Sam, looking awestruck himself, hobbling toward us. "I can walk again!"

Iliana and I both clapped and cheered, and she even jumped up and down and said, "Good job, buddy!"

It sounds made up, but I swear it, this is what happened. I'm so moved by her grace and support of him. I love her so much.

The look on Sam's face was almost just like the first time he went for it, and walked to me almost two years ago. I remember the Bob Dylan onesie he was wearing and his expression perfectly. I actually managed to get a picture of that joy and pride, mixed with a little bit of wild fear at this newfound skill, and the liberation and separation that would come with it.

I guess that was the only difference. There was no trace of fear this time, just pure joy and pride, and still the amazement that it was actually happening. It's been since January 14 since he last walked, and to a not-yet 3-year-old, that must seem a long time.

The doctors had said it would take three to four weeks until he walked. Last night it was one week and four days after the cast had come off. I am so proud.

He hobbled all over the house, saying, "I'm doing it! I'm walking!" When I told him it was time to read a book before bed, he said, "I don't want a book! I want to walk!"

He is not dragging his right leg, it's just a little wobbly, and he's getting used to the length discrepancy.

It is even more striking how much longer his right leg is than his left leg now that he's walking, when it used to be the other way around. He is having to learn to compensate the other way, so I'm glad the surgeries will be close together so he won't be thrown off again when the legs match in length.

Already I had been struck by how much he has been preferring his right leg since the surgery, when he used to prefer the left, I'm assuming because the angle was less severe. So even with the pain of surgery, and the lack of mobility caused by the body cast, he still prefers his right leg now because intuitively he knows already it works better than his left. That is so telling to me.

It makes me feel so confident that surgery to correct the coxa vara was the right thing to do. I can't wait until he feels both legs moving the way so many of us take for granted.

I can't wait to see him running.

They say he might not necessarily be an athlete, and I don't care one way or the other, but I do know enough about my son to know if he wants to be an athlete, he will be one.

In fact, we've been watching Olympic snowboarding and both kids want Jim to teach them next winter. They're in awe of the fact that he once did a 540, and regularly did 360s. He says it might not be so easy now that a decade has past, but I think he'll surprise himself. I hope we can make this happen next winter.

I'm so grateful to have the fortune that this surgery is even an option.

I'm so grateful to have such amazing and graceful and wise-beyond-their-years children, and so grateful to have such an incredible husband.

I'm grateful to have such amazing friends and family who have been so supportive through all of this, gone to immeasurable extremes to give all of us a little more comfort.

I know this all is so trite, but it is what I feel. I feel so blessed that I don't even know how to process it. I don't even think I deserve to be this lucky, but I'm so thankful that I am.

No more cast!

As Fancy Nancy says, I am ecstatic.

Sam's cast came off two days early on Monday, February 8. The reasons aren’t exactly great; finally he exploded so far up the back of the cast I knew I couldn’t have gotten all of it. I called first thing Monday morning and was told to bring him right in. As soon as the home health aide and the visiting nurse were on their way out, I was calling Sam’s physical therapist to tell her we couldn’t do PT that day.

Jim and I ended up bringing Maya with us since we had not expected to go Monday to get his spica cast removed. Chris, Jim's mom, was going to come and help us out that Wednesday so Maya wouldn’t have to get dragged on the trip, but we had no choice.

When we saw Sam's pediatric orthopedist, Dr.Albright, he asked when he was set to see Sam. Wednesday, we told him, and suddenly I worried he would just have us wait until then to take the cast off and X-ray Sam, but he sent us right down to get that cast taken off, only three and a half weeks after Sam had surgery to correct coxa vara on his right hip.

(The left hip will be done April 8.)

We stumbled upon the oddly placed and obscure cast room, and everyone seemed confused. Apparently we’d been directed right there instead of to registration. But no matter. Two guys in scrubs came in wielding huge tools. Sam was laying on his back, and getting nervous.

“Iyana?” he cried out at one point, wanting to see his sister, and she came over to him and kissed his knee, and then his arm so he could feel it.

One man held what looked like an old-fashioned vacuum cleaner while the other took what looked like a circular saw and began cutting. It was loud.

Maya hid behind a curtain, peeking out occasionally.

“Please be careful of hurting my brother!” she called out.

I tried not to laugh or cry at that second, but I had to keep petting Sam and telling him it was going to be OK. He was really still and really good for about the first 10 minutes, but when the tech started using sort of reverse pliers to pry the thing open, it started to ache. I could tell he was doing his best not to hurt the cut, but it was impossible.

“Get many of these?” I asked him.

“This is my first one, can you tell?” he asked back. I’d been kidding. He hadn’t necessarily put me at ease. But I'm sort of kidding again, I knew he was fine to remove the cast, I just know it's pretty rare to come across a kid in a body cast.

Finally, he got one large chunk of leg off.

Sam immediately started screaming. Not crying. Full-on screaming -- high pitched, pig-in-a-slaughter-house screaming. As soon as the air hit his skin I saw a rash instantly emerge. Under the tiny red bumps were large peeling scales.

Maya’s eyes were wide and her brows were furrowing and she cried, “Ooh!”

I motioned to Jim to hug her; at this point Sam was clasping both my arms and I was hunched over him in a sort of awkward hug.

The final 10 minutes or so of getting this thing off, I stayed like this, and Sam cried, and Maya almost cried but didn’t. She just looked so concerned, and about 20 years older than she is.

Finally he cracked the rest of the thing off, while Sam screamed. I guess the air hitting that skin really hurt, and the incision had to hurt too.

Finally I was able to lift him off the table, and he seemed so small and frail, like a little snail out of its shell. I had no idea how to hold him so I didn’t put pressure on his incision, but finally worked out a system. He nestled right into me, and I felt the warmth of his whole body against mine, and just drank it in. I had so missed his core next to mine. And I get my Maya snuggles, but she is less likely to stay still these days, and she is getting very big.... and trying to comfort a child post-surgery is much more difficult with this barrier.

We went back up to X-ray, and I just held Sam, and we literally left a trail of white flakey skin that was falling off.

People in the waiting room just looked at him, horrified and wondering what happened to him, and I was thankful to sit next to a little kid, around 10, who just looked right at him, then up to me and asked matter-of-factly, “What happened to him?”

As we chatted, Sam was called for X-rays, and then back into Dr. Albright’s office. He peeled the bandage off the five- or six-inch incision while Sam cried, and then had me help pick off the smaller tape underneath. Hard for him to do with the gloves on, so I used my nail, and a suture caught on one of them, and he screamed.

About an inch of the thing was almost open, filleted. It looked raw, but not red, and Dr. Albright was happy with his progress.

He is making strides, but a week later is not walking. The doctor said it would be three to four weeks, but I’m not so sure. He has said he can’t walk, but we keep telling him he will. He is so happy being out of that thing, and he crawls. Jm asked him a couple days ago if he was going to try and walk, and he said, “Not yet.”

He’s pulling up on chairs and tables. He’s cruising. He has gotten on his riding fire engine and can power it with both legs. He has stood unassisted. Today he is cruising round and round his train table for the very first time.

In a way it’s like watching him learn to walk again. It’s like getting to meet this milestone again, and I guess it will again in May or June. You’d think I wouldn’t be as proud and giddy and excited this time around, but I am. Maya has been really encouraging mostly, and very rarely goes and just takes something from him.

His incision looks much better too, and now Jim has told him he’ll have a cool scar. Jim calls him an X Man. Sam likes that.

We’re trying to catch up on everything that has been neglected, but of course we haven’t, and we took the past three-day weekend to just be ... enjoy each other, relax and revel in the fact that it was just the four of us. After an influx of visitors -- thank God, I don't know what I'd have done without them -- it's nice to just be together. I’ll try to keep the blogs coming to update more frequently.

I can’t express my relief at getting this thing off after just three and a half weeks. I can't even fathom having it on the original prediction of six.

I tried to chronicle a day while he was in the cast, and I’m going to include it here. Of course, I couldn’t finish it. And of course, I left a bunch of stuff out, but I want to paste it here so everyone will understand why they heard so little from me while Sam was in his cast, and just in general.

Some Thursday in early February, I don’t know which one...

8:15 a.m. Jim gets me up. This is wonderful because he’s been up since 5:30 a.m. with Sam, who can no longer sleep. He has (fortunately for me, not so much for him) just spent the last 20 minutes drying Sam’s cast after he had, um, sort of exploded up the back of the cast. This isn’t pretty, but we are obsessive about cleaning it and drying it so he won’t experience “skin break-down.”

8:30 a.m. I have my coffee in hand, and am racing around to get dressed and look as if I have washed my hair in the last three days, which I haven’t. Luckily because my mother-in-law Chris is here, Maya is actually dressed, fed and ready to go. It’s a miracle.

8:45 a.m. I check my email, realizing I have to fire one work-related one off before I’m gone all day.

8:50 a.m. I hoist Sam up and onto the couch so I can change his shirt, wash his face and put some ladies’ small sweat shorts on him. The extra smalls had worked well, but I had bought smalls so I could wear them when he’s done. They are way too big.

8:55 a.m. We should have already left, but I am still struggling to hold Sam with one arm while jamming his arm into his coat pocket. I will need to weigh him tonight just so I actually know how much I’m lifting. Chris is scrambling to make sure Maya has all her winter gear to take to preschool.

8:57 a.m. I run back into the house to get Maya’s bag of winter gear.

9:12 a.m. We park in handicapped parking at Maya’s preschool and I haul Sam’s wheelchair out of the back. I want him to go in today so he can see the kids.

9:20 a.m. Chris and I wheel Sam back to the car and I spend about 20 minutes trying to arrange his wheelchair in the back so it won’t slam against the back window or into his head. Frustrated, I give up and start to drive to Trader Joe’s.

9:42 a.m. I pull over at Blockbuster to hoist the wheelchair back out and try again, as it is slamming against the back window.

10:15 a.m. We arrive at Trader Joe’s and I hoist the chair back out, set it up, and then hoist Sam out of the car and try to arrange him in the chair.

10:45 a.m. Hoist Sam back into the car, collapse the chair and hoist it back into the car before spending another 15 minutes arranging it just so in the back of my RAV, and pile the groceries around it.

11:15 a.m. Pull into Target parking lot so I can run in for extra-small shorts while Chris waits in the car with Sam, but he says he wants to go in. I acquiesce and move the car to handicapped parking and start the hoisting process all over again.

11:45 a.m. I spend too much money at Target on toys and DVDs, which is dumb because I still have boxes of unopened toys in my bedroom. I try to force the chair in on top of the groceries, and have to remove the chair and the groceries and start all over again.

12:03 p.m. I pull into a parking lot near Target to take everything out and start over again. I think I have a system now.

12:15 p.m. I try to feed Sam lunch, but he’s so tired and cranky he does not eat. I have completely overdone it with him today. I change his diaper and blow dry his cast with a cool hair dryer, and put him to bed.

1:30 p.m. I get an email saying my 2 p.m. phone interview with the CEO of an engine manufacturer is cancelled, so I send an email to another source while Sam is asleep, the CEO of a boatbuilder, who calls me back around 2 p.m.

2:02 p.m. Sam wakes up and is terribly upset. He wants cheesy popcorn but only wants me to get it for him. I cradle the phone on my shoulder, trying to absorb the statistics on boat exports for a story I’m writing, and rush to get him his popcorn.

2:15 p.m. Repeat above.

2:25 p.m. Repeat above.

2:35 p.m. Chris comes and whispers would I like her to pick Maya up from school. At this point I have given Sam the whole bag of popcorn, but am still on my interview. I whisper to her that I will go just as soon as I’m done with my interview. I am typing the CEO’s comments the whole time.

2:45 p.m. Continue interviewing my source, even though I know I am supposed have left to pick Maya up from school.

2:50 p.m. Hang up the phone after thanking the CEO for his time, race out the door without a coat to get Maya, and dial my editor while driving.

3:07 p.m. Hug Maya.

3:20 p.m. Arrive home with Maya, and Chris informs me that Sam has pooped. Since Jim and I are the only ones who can lift him, I hoist him out of his spica chair and take him back to change his diaper.

3:22 p.m. I cannot find the maxi pads that I use to line his size 1 newborn diapers that we tuck inside his spica cast. After much scrambling, I find one and begin the blowdrying process. Sam is not happy about this. I tuck in the small diaper and maxi, and locate a size 6 diaper to wrap around the whole thing.

3:45 p.m. I help Maya do the Hello Kitty puzzle I got her while Sam puts together his new Cars puzzle.

4 p.m. T.V. I love T.V.

5 p.m. Try to decide what we’ll have for dinner. I decide to make a broccoli casserole and wild rice to go with the delicious chicken Chris made and brought.

5:15 p.m. Bring drinks to the kids, and peel them some bananas.

6 p.m. Scramble to get the casserole made after prepping the rice. Then it occurs to me that the kids won’t eat the chicken with tomatoes and mushrooms, so I poke around the freezer for an easy protein.

6:15 p.m. Assemble the casserole.

6:45 p.m. Realize I should have already started the rice, and the breaded haddock for the kids takes 30 minutes. There’s no way this dinner is getting ready before 7:30. As I set to begin catching up, Sam needs his diaper change, so I stop everything to change it and blow-dry his cast. This takes 30 minutes.

7:15 p.m. Kids are starving, so I wash Maya an apple while Chris cuts up a pear for Sam. We give them gifts she brought to distract them, a puzzle for Sam and modeling clay for Maya.

7:30 p.m. The rice is not done at all. The directions are crap, apparently.

7:45 p.m. I ask Maya to wash her hands, and struggle to get Sam’s hands wiped with a Wet One while he boxes me.

8 p.m. We are finally eating.

All this being said, and while I’m not looking forward to the next surgery, I am dreading it much less than the last one. We know much more this time, know how to handle and treat his pain and everything else... And in hindsight, it doesn't seem like a long time. It feels like he's been out of that thing forever. He is asking when he'll walk again, and I do feel really bad putting him right back through this again after he gets his legs back, but I don't want him in that spica in the summertime. If he was uncomfortable in winter, I can't imagine August.

Soon this will all be over!