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?

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!