Test

the good, the bad and the ugly

Goodness, it's been interesting around here! This is gonna be kind of long - my apologies in advance. First off, the good: Oliver had a great appointment at Shr*iner’s Hospital a couple of weeks ago. His x-ray is still unchanged, which has been a happy surprise, and means one of two things: #1: He has somewhat asymmetrical ossification of his hip bones (which looks just like early Perthes on an x-ray and would make that very likely in combination with hip pain) combined with recurring transient synovitis, a painful occasional condition in one of both hips that happens for some kids after colds. It’s fairly common, and harmless in the long-term, and he’d grow out of it in a few years. His most significant pain has come after colds, so that points in that direction, and it would also explain the episode of pain in the other hip. However, he had no pain after his recent cold. Or #2: He does have Perthes, but an extremely mild course of it that is unlikely, at this point, to get significantly worse.

Either possibility is much better than the scenarios we’d been given to expect since his diagnosis – he’s surprised the docs, but in a good way. Someone asked me if I was “mad at the misdiagnosis” –but let me be clear: we don’t at all feel that he’s gotten anything less than the best care he could have – his progression has just not been typical. Thank goodness for that! Both the Gill*ette doctor and the Shrin*ers doc had the same opinion and feel he does need to refrain from high-impact activities for now. The wheelchair is going back to the supply company, and he can walk as long as he wants now – so traveling, summer hiking and camping seem to be in the offing again. He will need continued monitoring and does still have pain here and there – but that’s it for limitations. He can swim, CC-ski (if we ever get snow!), climb, and many other things all he wants. So hooray! When we get the final go-ahead for him to run, we want to have a “running party” in the park to celebrate, and hope you'll come if you're close by.

Unfortunately, x-rays aren’t the only thing that has surprised doctors about his little body lately. The day after the Shri*ner’s appointment, Joel took him to the doctor for wheezing, and she put him on prednisone. This isn’t so unusual for our Mr. McWheezy once a winter or so – he does have asthma – but he was worse the next day. His (extremely experienced) pediatrician was rather floored by how low his oxygen sats were – most kids would be audibly wheezing and have chest retractions with O2 at 86/87, and she gave him an emergency neb treatment and sent us on down to the hospital a couple of miles away. He was within the “call an ambulance” range at that point, but I got him there faster than they would have. He spent the next three nights there, continuing to produce numbers that were much worse than he looked. It was quite honestly, terrifying a couple of times – that first night, after we’d settled into bed after hours in the ER and him getting a full 2 hours of straight albuterol (can you even imagine? I feel all jumpy after one squirt), his O2 dropped to as low as 82 and bounced from 82 to 85 for a full half hour. The whole medical team was called in, ready to intubate, but that only helps to force open the airway, and his wasn’t closed. He was actually moving air, and just lying there sleeping. They turned his oxygen up incredibly high, and were clearly confused as to what was going on – with numbers that low, they said he should have been wide awake, gasping for breath. All I could do was hold his hand and pray.

Thankfully, his numbers did creep back up with the extra oxygen, and while he gave us a couple more little scares here and there, he slowly improved over the next few days. We brought him back to the ER for a check a few hours after going home because he didn’t seem great to us and it’s just so darn hard to tell with him – but he checked out OK. He’s back in school, was at first still getting albuterol every 4 hours, but now he's doing fine on just his daily preventative inhaler.

It's scary, though, knowing that the typical checklists that keep most kids safe won't do that for your child. His doc said that had we called the nurse line rather than bring him in, that might have been a fatal mistake, because he wouldn't have shown us any of the red flags they look for, and they would have told us he was fine to stay home. This is not my first rodeo with this child - I've been well aware for some time that he can be much worse off than he looks. I can take the annoyed looks by urgent care doctors when they tell me I don't need to bring him in for a cold. I hit us rather hard, this time, though, that Oliver’s had a lot of bumps in the road in his short life. We just want the kid to catch a break for a little while! What a winter – not that we ever for a moment resent caring for him, but it’s been emotional, logistically demanding, and exhausting.

One, or two, or even three, you can kind of absorb and move on from after the crisis has passed, but man, significant medical care is, frankly, one of the defining elements of his childhood. That’s now how we’d like to view it, but I think that it’s a reality we need to understand and accept in order to fully support him. He had a rocky beginning, a very serious case of sepsis at 6 months that could have killed him had he gotten antibiotics any later, several episodes of significant asthma needing ER care or hospitalization, a tonsillectomy combined with the flu that required almost a full month before he truly recovered, Perthes disease (or something), and last week’s roller coaster. It’s been tough –we love him so very much, and while I never think it’s a good idea for a parent to insist on protecting a child from every adversity, we just want things to be a bit easier for him for a good length of time. I think it affects Noah too – he worries in his own somewhat private way, and I’m not thrilled that he sees this kind of thing as almost routine at this point.

Thankfully, Noah is really thriving in school and life right now – so is able to roll with things pretty well. But it is what it is – we do the very best we can to prevent health problems, but we don’t really control these things. I think it’s important to treat children as resilient people, capable of handling challenges. I try to draw on that when interacting with Oliver and resist this overwhelming sense of how vulnerable he can be, because it’s important that he doesn’t just see himself as “the kid with all the medical issues”.

On the advice of someone I know who has dealt with many medical issues with her child; I try to emphasize how he overcame his challenges or how he was helped by others with them more than the challenges themselves, in addition to emphasizing their temporary nature. I also try to find him ways he can feel good in his body – being outside, swimming, and such. I can’t wait until we can get back to all that – spring can be the worst time for pollution, and pollution is one of his big triggers. I feel badly about that, raising him in a metroplitan area that has high-pollution days. We did purchase a really good HEPA filter for the house to try and minimize that, and I get daily pollution counts from the web, as does the school nurse.

I know others deal with far worse. We do have a lot of loving support from family, church, and friends, and that makes things immeasurably easier. His class was so sweet –they sent a big card, and his teacher said a few were really very worried, and needed some reassuring, so she checked in with us regularly so she could update them. That kind of broke my heart – perhaps some have dealt with losing a relative in the hospital or something. We have a good plan to prevent asthma exacerbations more aggressively, and see his awesome ped again on next week – the one who knows that with this kid, you really have to go by the numbers. We are to get a :sat check” with every cold, and may eventually end up with a pulse-oxometer at home. I try to remember that his medical issues aren’t permanent (though mild asthma might well be here to stay at this point, it really should get better eventually, as the worst years are usually 6-8) and there is good reason to hope that Oliver will grow up to be a healthy, thriving, deep- breathing, running young man and still have that beautiful smile of his, as will his brother. Let's just pray that the excitement is over for the winter.

yeah!

Awesome news for Oliver! Good hip looks OK - just stiff, but his range of motion was SO much better in the right that she said he can actually walk for now unless he's limping. No running, jumping or hopping, but he can walk as long as he isn't limping. It's hard not to worry it'll flare up again, but we trust our doc - we can always dial back what he's doing if it doesn't go OK. He'll use the wheelchair only for long walks - like to the mall or something. The doc said the PT we're doing at home is clearly helping, and that his exam looked really good. She also seemed hopeful that it wouldn't get that bad, and mentioned again that there's still a possibility he has a congenital variance rather than true Perthes. She'd earlier also said not to get our hopes up about that, though it's hard not to. But it's amazing how suddenly doable "not running, hopping, or jumping" feels compared to thinking that Oliver might be in that chair full-time for a long time. The ER doc had said, "it looks like a duck and quacks like a duck but we need a little more time to prove it's a duck", so I was fully prepared to hear that he might or does have Perthes in the 2nd hip. What happened instead was such a happy shock. We'll take it as long as it lasts - what a wonderful Christmas present.Time to focus on something other than this disease for a while.

Update

Merry Christmas, everyone. This is a busy season for the family of a church musician –and this year is no exception. Somehow, though, I haven’t had the bouts of frustration I usually have this time of year – the feeling that our priorities are being pulled a little out of whack as we move from one busy event to the next or give in to the pressure to buy too much stuff for too many people. I’ve managed to turn down a couple of worthwhile but potentially hectic events, we’re keeping the Christmas giving simple and fun and not too excessive, and the boys have been overjoyed at the best Christmas traditions – trimming the tree, participating in the Christmas pageant at church (where they each got to read part of a Rudyard Kipling poem aloud), singing Silent Night at the end with just candles lighting the whole church. Oliver whispered to me as he had his candle lit, “the light represents a gift from God!” I don’t quite know how this particular Christmas, with all its stress and sometimes sadness, can feel more like what it ought to be than the same season celebrated under more ideal conditions in recent years, but it does. Something about all of this puts the season in its proper perspective -and it is a powerful reminder to me that less really is often more. We’ll spend Christmas even with Joel’s family and then head to Bryn Mawr church that evening. Christmas morning will be spent at home opening presents and eating pancakes. A few days later, my parents come to bring in the New Year with us. Lots of goodness coming our way.

That said, things aren’t exactly easy around here. Oliver has been having some pain in the other hip, and it is unclear exactly what that means. He says it feels just like his Perthes hip, which of course, is not good at all. At first it came and went, so we hopes he’d just strained it, but now it’s more often and we see the doctor again on Wednesday. Chances are, we won't know anything from an x-ray this early, but we need a plan for what can safely do right now. If he does have it in both hips, it’s a serious game-changer: he’d have a poorer overall prognosis in terms of how long it will take to heal, how likely he is to need major intervention and/or surgery, and how likely he is to have trouble in his forties or fifties. It also means he’d be a lot more disabled for the duration of the disease – probably confined to a wheelchair for all or most of the time. We may need to look at ramps; a lot of the things we’ve been able to do will not be possible, and school will be a lot harder. It’s overwhelming to even think about, to be honest, but I am continually reminded that we can do the things we think we cannot do. Oliver has good days and bad days – he is still very angry sometimes, though he puts on a good game face in public. He hasn’t been as focused in school, and he’s definitely in some pain, sometimes significant pain. I think he’s trying really hard to adjust, but it’s just really hard sometimes. It's painful to watch too - I know what chronic pain is like, and I really wish I could take it away for him.

He does have a new and much better wheelchair – it turns out the company that gave us the first one gave us the wrong size, and a crappy refurbished one at that. When they swapped it out, the difference was huge – he can do a lot more with it. It’s also slightly lighter than the old one, and with the feet off, I can just manage to get it in and out of the car. I have this complicated but (barely) workable thing going right now where I put the 15 pound transport chair in the front seat, the wheelchair in the trunk, and use the lighter chair for quick outings and the wheelchair for everything else. Last weekend, we went to the (wonderfully accessible) Works museum, Subway for lunch for the boys, then the Courage Center to swim. We took the wheelchair in to the museum and the Courage Center, and Oliver completely propelled himself, and very well. He needs the exercise and the feeling of independence, so that’s really important. It’s not as big a deal for a quick run into Subway, and using the transport chair for that saves my back one time of hauling it in and out of the car. When I do haul the chair, I balance it and then slip it over the bumper and back off of the bumper using a very slippery sleeping bag, which helps a little. Our life is full of these messy adaptations these days, it seems like. A minivan would be a lot easier, and we’re thinking about trading in our Civic hybrid for a used one, but we hate to give up our very reliable and efficient car for something that would be probably less reliable, with higher miles, and cost more to drive. We’ll see. There’s not much he can’t do with a wheelchair than an adult couldn’t – popping wheelies and all. He’s getting adapted gym class now as well, which is great – he practiced advanced wheelchair skills, learns some ball games, and really gets his blood pumping.

I’ve been really proud of Noah lately, both in how he’s doing in general and in how he’s been dealing with all of this. As anyone who knows him knows, Noah is a bit of a spacey kid – very bright, but very in his own head. He’s not always easy to communicate with – he’s a true introvert,, and sometimes he’s thinking so hard, he doesn’t even hear you, or gets over stimulated by being around a lot of people then acts kind of goofy. His teacher did mention to me that “everybody thinks their six-year-olds are immature – that’s just six-year-olds”, which gave me a little perspective on his silliness – I had lunch at their school yesterday, and I see much the same in his peers, especially the boys. Noah is doing very well in school, though, doing lots of challenging work, being diligent about his homework, helping other kids with reading, participating more in class (his teacher’s big goal for him). With us, he’s been a big help with carrying bags, opening doors, and all those little details when we’re out and about. I could not have imagined a month ago how good he would get at all that, and how willing he’d be. It’s nice to see glimpses of a new maturity in him, and he can also be utterly sweet. I found this note on my pillow the other day:

Noah never says these words, and is very selectively affectionate, but he’ll write them down and put the notes in my pocket or purse, sometimes with a piece of Halloween candy taped to them. Ollie is such a lover, but I equally cherish Noah’s ways of expressing his love. I write him notes back sometimes, and he loves that too. That kid is just head over heels over the written word!

We see the doctor again tomorrow, but I doubt she’ll have a clear answer about Oliver’s “good” hip, as it’s not showing on the x-ray yet. This is typical, so it may be months before we have enough data to predict much What we will likely have is a recommendation about what he can and can’t do for now. We’ll keep you posted. Thanks for all your love and support.

Thanksgivings

We're plugging along over here – and adjusting to things pretty well, I'd say. We had an appointment with Oliver's doctor, and she was pleased that he was pretty much the same as before. There's a tiny chance he's got more of a congenital variance or abnormality rather than true Perthes, but it's not likely. We'll have enough data in January to know for absolutely certain. He has a little pain at night, but it's not too bad, though he shifts his position a lot and has a hard time sitting in a chair for a long time. He got permission to swim and to bike a little – not far and up big hills or anything, but the position that puts his hips in is good for the reforming of the bone. His range of motion is still decent – we do lots of PT exercise to make sure it stays that way, and the doc said that if she reffered us to physical therapy, the goal would be to get him to where he is now, so there's not much point right now. That could change, and we did apply for care at Shri*ners, which is a stellar orthopedic hospital for children near us.

I think we're going to confuse the heck out of the neighbors with child who takes the handicap-access bus, is sometimes in a wheelchair, and sometimes biking up and down the block! But it makes sense if you think about it – he can't do much of anything not fully weight-bearing, including walking. He can't very well use crutches over big snowbanks or on slippery streets, and in winter, I sometimes have to park halfway down the block, so a handicapped parking spot will be needed as well. I'm glad we have a little house, though, because in it, he is allowed to walk for a bit every day. The rest of the time he stays on crutches, a walker, or the chair. I'm grateful for his generally compliant nature and he's doing a great job with everything, but it does all get to him at times. He gets worried, and we have to remind him that we'll handle the details. The lift on the bus really scared him. He sometimes gets really angry and frustrated and anxious, and then he'll be back to his old self again. To me, sometimes 2 years or so seems like it will be a blip in the tapestry of his childhood, but other times it feels like a sizable theft. It's hardest of all to watch him watch his friends run and play. That makes me want to get him as much pool time as we possibly can.

One of the challenges that also really bugs Oliver quite a bit is the constant comments from adults. I think it's the crutches hanging off of his chair – people assume it's an injury or accident of some kind, and that sympathetic comments or questions are OK. And they mean well, we know that they do, but Oliver really just wants to be seen for the funny, sweet and curious kid that he is, and I think he feels like all people see is his equipment. And then there's the occasional true jerk – like the lady at the Glo*bal Market who teasingly accused him of faking his disability, causing him to burst into tears at the thought that someone would think that. I told her that her comments we not funny, helpful or appropriate, and I hope that Oliver felt I stuck up for him OK. I reminded both him and myself that there are many, many kindhearted people for every insensitive buffoon.

Last week, we went to Coura*ge Center, a center for people with disabilities to do sports, recreation, and therapy. We went to their family swim, and Oliver was so interested in all the wheelchairs, and all the pictures on the walls of people with handicaps doing athletics. There were several kids with wheelchairs at the pool. He really wants to go back there even though the Y is much closer, and I think that's because he really craves a place where he doesn't feel different. In the pool, he's just like anyone else – free in his body, but he also sees other people dealing with some of the same stuff he is. They have a weekly family swim that's not too expensive, and I think we'll make that part of our routine for now. We also need to figure out how to get both boys some lessons somewhere, because we might as well use this time to hone those swimming skills and burn some energy this winter.

Slowly, all these details are starting to feel more like just what life is right now, and less like a new part-time job. Joel and are organized and on the same page – we have a file with sections for research, medical records, school paperwork and what have you, and we work daily to have the same understanding of what needs to be done. We've had to push a bit with the school to get some of what Oliver needs a bit more formalized, but overall, they've been fantastic and incredibly kind and helpful. You would not believe all the little logistical details it requires to make things more or less normal for him – it's a lot, and his teacher has a whole bunch of other kids keeping her busy too. I've been equally impressed with the students at their school. Caring for each other in practical ways is a big focus there, and you really see that at work in a situation like this that requires a bit of extra understanding and assistance.

So we're OK, folks. We're not sitting around mourning what could be at this point, and it really is possible to get your head around something you didn't think you could and march somewhat bravely on in a fairly short amount of time. Oliver's not quite there yet all the time, but that's OK – understandable, and he has a lot of loving support to deal with that. I think it's quite likely that good will come of this, that it will shape his childhood in some positive ways as well as showing him what it looks like to overcome challenges as a family and as a community. That applies to all of us, actually. A bit of adversity can shape us in meaningful ways, whether as children or adults, even though as a parent, it's hard to watch. On the other hand, if he ends up as one of the 10% that gets Perthes in both hips, I might have a tougher time being so positive... Right now, I think that's my biggest fear, that he'll get it in the other hip in a year or two and end up with years of staggered disability and a poorer prognosis as a result. The other one is that he'll be in pain; it's hard to tell how bad that will be, but the worst is yet to come. Most kids do OK with some minor pain meds and being able to shift position a lot along with some other strategies, but some really struggle.

A couple of years I wrote what I was grateful for at about this Thanksgiving time of year – I think the above about covers it this year. There's lots, and we're not short on gratitude on the moment – it far eclipses any woe. Wishing you and yours a lovely Thanksgiving as well. Thanks for reading.

Halloween

A few photos here (viewable even if you're not on Facebook).

better

Every day still feels different around here -I can't say we're really quite adjusted yet to our new routines and what Perthes brings to our lives. I can say that we gave it our very best this week - especially Oliver, who had to go to school and adjust to being in a wheelchair and/or walker all day. He did really well, and the kids and staff have been extremely kind and helpful. In this situation, it's great that they're at a big school with good services and resources. At home, things were harder - he'd go all day maintaining his composure, and kind of lose it at home with being sad or angry. I think that's pretty understandable and normal, and even that's gotten better. Noah is adjusting as well, I think - the two of them are finding new ways to spend time together harmoniously, and sometimes that's hard. That boy can be so reserved and introverted, and I've made a real effort to try and talk with him often. Sometimes he just wants me to leave him alone so he can read.

One thing that made me feel much better about everything was the transport chair arriving. It weighs about 15 pounds and handles a little easier than a sturdy umbrella stroller - a huge difference from that 45 pound beast we can now leave at school. Ollie needs the wheelchair at school - he can propel himself in it, which he can't do in the transport chair - but the transport chair will allow me to take him places. I'm supposed to be on a 20-lb.lifting restriction with no bending while lifting - I really couldn't manage that getting that chair in and out of the car much longer. He can also scoot himself along in it with his feet, so he's not totally stuck in it as I'd feared he'd be.


And look how small it folds!



Ivy seriously has her eye on those tennis balls.



I also spoke with his doctor briefly, and she did say that the MRI didn't look any worse than the x-ray. That's good news -it's possible that this means his femoral head was only partially affected, which would mean a likelihood of better healing with fewer complications.

Tomorrow, we go pick up a handicapped tag or plates (a 2-year one which I promise to only use with my son in the car), and then the 3 of us will volunteer at the Twin Cities MCC World Relief Sale in the children's area, and then on to cousin Lily's second birthday party. (How did that happen, by the way?) Much to celebrate and be grateful for.

I get a little sad when I think that it will be some time before we see this:



But it won't be forever, and if his daddy is any indication, he'll have many years of tree climbing ahead of him. Oliver got invited to a birthday party this week - bowling, which I think we can manage. People have been incredibly helpful and kind - your support and prayers are felt and appreciated.

school

Yesterday, we went to church, and made use of the new elevator. Oliver was really quiet, and kind of upset a couple of times, partly because my mom had left that day, and he was sad about that too, and just overwhelmed. We went to the school playground, and he got some wheelchair races with Auntie Meagan on the baseball diamond. He had a great time until I made him slow down on his crutches at one point, and then he got furious at me. A lot of his anger is pointed in my direction, which I know is because he feels safe being angry with me. he accused me of treating him like a baby, so I've been trying to figure out how to protect his hip and still not make him feel like a baby because he's in a chair and limited in what he can do. I can handle that - it's understandable, and he also need and gets lot of hugs from both his parents. He had a better afternoon, watching a movie with popcorn and his brother next to him, and playing some UNO with his grandparents.

It was hard to leave Oliver at school today, but it seemed to go OK. The kids asked such great questions when we shared about his condition. He's going to get some extra swinging time at recess, since that's all he can really do there for now. He's pretty up and down emotionally, but I think he's doing about as well as he could be. I think he's just old enough to understand it's not forever, but in some moments, that's just not enough. It is what it is. We're lucky to have such great support, and believe me, we appreciate it.

quick update

We're hanging in there. It's been beautiful out, and we've gone out somewhere every day, partly to prepare Oliver a bit more before he goes back to school. Today, we went to piano lessons, the very accessible No*komis Library, and the huge and wonderful accessible playground at Hia*watha School. Oliver was in good spirits - he was able to get some exercise without overdoing it, and I think he felt a bit better about using the chair. Noah and he are slowly finding some ways to play together at the playground, though that's a challenge. Oliver could ride all over the playground equipment in his chair, practiced a bit in the parking lot, and was able to browse the books in the open bins at the library. We even practiced in the handicapped bathroom, and he was quite pleased that he could use the sink from his chair - though that may well not even be necessary often. He's also gotten much better with the crutches - which my mom was really good at helping him with. She has a lot more experience with them than I do because she's had so many knee surgeries. All in all, a hopeful day.

Tomorrow, we navigate church for the first time. I am so struck by the fact that neither Faith (where the boys and I go every Sunday) nor Bryn Mawr (where Joel works on Sunday mornings) were accessible a few years ago, and both churches have put in elevators and other improvements since. We are grateful for the commitment and good choices made by those communities in regards to accessibility, because otherwise, we'd be unable to come to church now! Our pastor is going to touch on what's going on during the children's time during the service tomorrow, and we'll do a quick explanation together. Oliver seems relieved about that - he's very disturbed by the thought of people being surprised by the chair and having to answer a lot of questions. I've been trying to head that off a bit for him with some e-mails to his friends' parents, and a few neighbors, etc.

Joel and I are also going to do a quick update at the sharing time in his class on Monday, and answer some questions if the kids have any. Oliver will get to pick a buddy to help him get to his specialist classes (like art and science), lunch, and recess. One of the things I'll go over in both church and at school is the most basic rule of wheelchair etiquette: that you don't move a wheelchair without the owner's permission. Oliver hates the idea of kids moving his chair or wheeling him around without him being OK with it, and that's a level of control he really needs to be permitted. We have that over our legs, and he needs it over his chair and other equipment. Oliver's teacher thinks the kids will be good about that and eager to help him - and she emphasized that he'll quite well-liked, known for being kind, and friends with a lot of different kids. That will help him a lot, and it was very good to hear.

the new normal

We’re plugging along through a lot of logistical details and challenges, and it’s really overwhelming at times. On Wednesday, the wheelchair was delivered. My mom came in right at that time, which was really good – it was kind of a tough afternoon. I can’t say I was at all prepared for how big and heavy a wheelchair actually is – even a lightweight youth model. When the boys were 3 and a half and we finally retired the twin stroller, they were 35 pounds or so each. Oliver is 60 pounds, so while I remember how heavy that 70 pounds was to push, I did not anticipate that this would be so much harder. A wheelchair is no stroller – it is heavy and full of hard places to hit yourself against, and awkward. Oliver really can’t propel himself far in it far– he will definitely need a push between classes. I’d thought that we could take it pretty much where we used to take the big twin jogger, but every section of sidewalk higher than about ¾ of an inch requires a stop and a careful push over, and there is no leverage bar in the back. The handles are a couple of inches too low for me and several for Joel. It is impossible to bring up or down steps even empty, or push up a steep hill, like the one to our front door, with a child in it. We can get it in the trunk, but within about a ½ inch, and only with the floor of the trunk removed. The whole thing feels terribly jerry-rigged and precarious and kind of impossible – I know it isn’t, but it feels that way right now. I have a bad back, and that doesn’t help at all. I did find out today from a co-worker that what we need to purchase is a transport chair – they don’t allow Oliver to move himself, but will allow me or Joel to get him to class and back and in and out of public places easily, and probably leave the wheelchair at school, where he can work up to some mobility with it. Maybe we’d bring it home on the weekends for longer outings. I just don’t see lifting a 45 pound chair awkwardly in and out of our car constantly. We've ordered one, and it should be here next week.

Oliver had a bit of a tougher time over the last couple of days, though he was very glad to see his Omie, and that helped a lot. The wheelchair was a shock for him – I think I’d unfortunately overpromised the mobility it would offer him, and it came as a surprise to both of us as we went around the block, how hard it was to maneuver and keep straight and go over cracks and up hills. He got pretty angry and upset in the middle of it, and really, I just felt he was so entitled to those feelings. It’s such a fine line in everything – I’ve been careful to cut him some slack when his feelings spill over and he gets frustrated, and lots of hugs and encouragement and validation, but I also think he needs some normalcy in terms of our standards and routine. I’m rather going on intuition here and it’s new territory, but I think he needs to know that there are still things that are the same – we still set the table, even if I bring the materials to him, he still needs to be respectful, he can still do his homework and feed the dog and go to school. If I thought letting him do whatever he wanted right now would help him, I’d do it in a heartbeat, but I think he needs to know some things are going on in a perhaps adapted form of what was. He’s a smart cookie – and especially good at seeing things from a variety of perspectives. I think that’s what lets him be such a little builder and engineer and so empathetic, but it’s also what’s having him mull over many worries and possibilities right now. I’m trying to make sure he knows that the big stuff, and any worrying, is the adults’ job – that it’s his job to just be a kid and do his best, and try and remember that this isn’t forever. If I’m careful of what I say in front of him, that’s why – he is the kind of kid who hears everything. We’re trying to find the balance between being encouraging and upbeat – which he responds well to – and also letting him feel what he needs to feel.

I guess I’m trying to remind myself of the same thing – that being a bit mad at the world and overwhelmed and sometimes sad right now doesn’t mean I’m not also utterly grateful that it’s not worse or forever, or that I don’t trust God or believe it will work out. I do.

A bright spot in our day over the last couple of days (besides my mom coming at what could possibly be the best timed visit ever), though also hard, was the school’s response. Joel and I had conferences anyway on Wednesday, and everyone from the school social worker to the specialists to his teacher and speech teacher pulled together to help us work through details large and small. I was so impressed and grateful. I find it rather terrifying that he’ll be away from us for 6.5 hours a day, possibly overdoing it under any one of those peoples’ care, and was much reassured. On Monday, we’ll bring him (that needs to be the plan for now, I think), and meet with the recess folks to see how we can get him some swinging time at recess every day. We’ll talk with the class about what’s going on, and answer their question during “sharing time”. Oliver will choose a buddy to wheel him around and help him to the bathroom - he can wheel there, and take a walker from the door.

Yesterday, we met a friend and her kids at the park, and gave it a whirl as to letting him do some hanging and hand-over-hand stuff (which he can do, but I can’t really lift him to help with all that well), and swinging. It went well, overall, but was also hard. I could see him thinking, realizing that he can’t run after his brother and friends, was left out of a game of hide-and-seek. It was hard for Noah too – they were both upset at one point or another in the outing, but also joyful at times. And that was rather the point, to help him start to come to grips with that before he’s at school and we’re not there to give him a hug when he’s sad.

A lot of people have thoughtfully asked after Noah – and believe me, we’re aware that this is hard for him too. I’ve been giving him a lot of little bits of extra attention whenever I can, and letting him know that he’s equally important to us and that we understand this is a big adjustment for him as well. He’s lost his racing and climbing buddy, and Oliver is getting a lot of attention. He’s been pretty sweet with Oliver, but last night at bedtime, he said, “I hate Oliver’s handicap.” Those were strong words for my reserved little guy. I did order some book from the library on the topic of siblings with disabilities, and might look for a support session or something for siblings. So much to look into…

Right now, we’re focusing on the logistical details and such, and not so much the medical stuff – mainly because we have another appointment on the 9th, and there’s not a thing that will change between now and then that could be affected by my scouring the internet, and I can do something about the practical details. We want to get both boys swimming and possibly biking (that’s a possibility when he’s at his best, as it’s good for hip range of motion and much less weight-bearing than walking). We want to find ways to be active again as a family. We’re looking into the Cou*rage Center, and a tagalong bike, and other ways he can be active and feel good in his body. I see some glimmers of hope in the new normal, and I guess we’ll just keep plugging along until we find our stride. Thank you for your love and support.

Oliver's not so excellent adventure

I have some unfortunate, though not catastrophic news. As some of you know from Facebook, Oliver was diagnosed with Legg-Calvé-Perthes Disease this today. It's a disease where part of the hip bone dies due to loss of blood, and has to grow back, and grow back in the right alignment and shape. He's in the beginning stages, and it will take 2 years or so for it to heal enough to where he can be active again. He'll need a wheelchair and/or crutches or a walker some of the time and to avoid running and jumping. Surgery is a possibility down the road, and it is especially a hope that he doesn't get it in the other hip. He's got a fabulous medical team for this rare condition, which affects about 10-15 kids in the metro at one time. He also has a great attitude, and we know he can do this, even though it will be challenging. If you want more information, this is an excellent, short overview that fits with what the doctor shared with us.

We've experienced a lot of love and support from friends and family today, and really appreciate your prayers and support. There are a lot of details to work out - his school situation, finding him therapeutic swimming somewhere (a great non-weight-bearing option), just figuring out how to get him in and out of the house. He's 60 pounds and I have significant back problems - it's going to be a real challenge, and I don't even want to think about the snow. It's a lot to digest. I start to think we'll get through this (and I know we will) and then I think about Halloween, for example, with all those many steps, and it doesn't even occur to Ollie yet as he talks excitedly about Halloween. It will take a while for him to digest it, I think - and I think it will be hard to watch his twin do daily what he can't. It will be hard for Noah too - I reminded him at bedtime that he and his needs are just as important, and promised to check in with him to make sure he feels that thats the case. And yet, I know it could be much worse - this is a self-limiting disease, generally. He should run and walk normally again, even if he won't ever be a marathon runner. There are small blessings everywhere - that my mom happens to already be on the way here this week, that we could get into an MRI right away and be seen by the only doc in town who specializes in this, that Ollie has crazy upperbody strength from all that climbing he does. An even larger blessing is our wonderful family, church, and friends. Less wonderful is the fact that the clinic is a tier 2 on our insurance, and we have no other options - that makes things a lot more expensive. Shriners may be an option - we're looking into that. We see the doc again in 2 weeks, and should know a bit more then - she's sharing the results of the MRI with her colleagues in Texas, where they have a center for this.

We'll keep you posted - thanks for listening.

welcome to Plot 125

Six years ago, when the boys were wee babies and I was often tired and overwhelmed, I used to occasionally pack up both boys and a double stroller that only barely fit into my small station wagon and drive a couple of miles west to walk at Do*wling Community Garden. Dow*ling is a fairly vast community garden, one of the oldest in the country, and one of two remaining Victory Gardens dating back to World War II. During the height of the Victory Garden movement, over 40 percent of fresh vegetables consumed in the United States were grown in Victory Gardens. Dowlin*g is one of only 2 remaining Victory Gardens in the U.S.

The grounds are lovely and flat, and I loved walking the stroller along the paths, watching things grow, seeing how other vegetable gardeners like myself trellised, interplanted, and mulched. It seems cooler and breezy down by the river, and there are woods with paths, and an orchard to walk through. One afternoon, I looked down at my 8-pound babies and had a mental image of 2 healthy, strong boys running off into the woods there, and thought that perhaps when they are older, they could take part in this lovely community of gardeners with me, climbing the trees, roaming the woods, and enjoying a tiny slice of country life in our fair city. I submitted my name to the waiting list inside a small box on a pole at the edge of the garden. It felt a little foolish, I remember - to think I could tend anything beyond my new brood at a time when it seemed such a difficult thing to even find time to mow the lawn.

For years, I heard nothing. I checked in a couple of years ago, and found out the list was so very long, it had been closed. I gave up hope of getting a plot there, thinking it was just too unlikely we'd ever be called up. When they were one, and two, and probably three, it would have been impossible - they would have climbed all over things they shouldn't. At four, and five, it would have been a challenge, but maybe possible. But then, this spring, we got a call: our name had come up, there was a plot available for the modest price of $25 per year and 6 hours of work; compost, water, and access to a shed full of tools included. And they are six; old enough to roam without being constantly within my sight, to follow some rules reliably and well, to really help, even. This is the perfect age for such things.



Our plot came with a bed of strawberries, a rhubarb plant, and some garlic chives and onions. It had been rototilled, and there was a pole bean structure in need of some fixing. The soil needs some work - it is sandy and gray, but already, it had the bones of a lovely garden - 20 x 20 in full sun for much of the day, and close to the water spigot and tool shed. There are gardeners who have been part of this community for 40 years or more, and I often hear the laughter and banter of good friends calling between the plots. Once a month or so on a Saturday morning, a class is offered on seed-saving or some such topic. It is nice not to garden in isolation, and I've learned a few things already this year. And the sun! I've never had the luxury or growing things in full sun before, and what it difference that makes.




Sometimes the boys help, digging or watering, but most often they play and climb.





There are many kids who play and build in these woods as their parents dig and weed and water.











Sometimes we put their bikes on the rack and they ride all over.





We often meet people here for picnics, combining a little gardening and social time.



(Don't you love the mother-son resemblance in the picture below?)













The boys have named the paths in the woods, and some of the trees. They have claimed a spot under the trees and brush as their "camp", and made a pretend fire ring, and a structure out of sticks.



Do you remember doing this? I do. Kids don't often get the opportunity anymore, at least not here.





They run off together, into the woods, strong and lean and glorious, and check in with me to tell me their discoveries. I tell them mine - the beans are up, the berries are ripe - our souls are filled near to bursting with all that is growing and whole. Sometimes good things come our way at just the right time.

Mississippi River Gorge

The nice part for me and the boys when just one kids has social engagements of one kind or another on the weekends while Daddy is teaching is the built in time with his brother. We've been exploring in the river gorge, taking note of the flood levels, talking about the homeless people who live in the caves there, and even finding fossils. We live right near the long Mississippi's only gorge - a deep ravine that we drive over a lot, watching the river from up high, but have to work a little to get right beside. That quality makes it especially impressive when you descend the long stairs or winding steep paths to get there - suddenly being close to this great, powerful river roiling and churning past, watching the river traffic, noticing the birds migrating back up this great river "bird-way".





No*ah, who had to be convinced not to offer all my money to the homeless man we saw down there, got the idea to buy some winter wear at garage sales this summer and put it by one of the caves in the fall with a note . We're putting that on this year's "summer list" of things we hope to do for the first time. We make the list every year -our third annual list of free or inexpensive things we want to try or learn about or places we want to explore over the summer. Also on the list so far are: Biking the Gr*eenway to the Global Mark*et, riding the Lake Ha^rriet trolley, visiting at least 2 new regional parks and at least one new state park, and launching a giant water balloon from really high.

Really high.

now we are six

The boys are six. Really and truly grade-schoolers, losing all their soft little-boy roundness, all independent and capable and social. I adored having five-year-olds--I think it's been my very favorite age--but I think six-year-olds will be pretty great to have around as well. Their birthday fell on spring break, so we had a little party at a local climbing place one of those mornings. The boys had a great time, and I think their friends and cousins did too.







The picture above is of Za*ch, No*ah's best friend. He's a great kid, and lots of fun to have around. No*ah's the first of the two to have a real best friend, and it's both very fun to watch and also a little heartbreaking, because it's not exactly fun to be the one to hear your twin rhapsodizing about all the stellar qualities his best friend possesses. But, Ollie has adjusted and is making his own friends, who he holds a bit more at arm's length. When not with No*ah, Ollie can actually be pretty self-conscious. The other day, he spilled some water on his lap on the way to Zo*e's party, and he was mortified - so embarrassed to think someone might think it was pee!





It's been a nonstop birthday-party fest since then, with each boy going to friends' parties, plus Zo*e turning four.








SIX!

Long Winter

I am rather overdue for an update, aren't I? We are well, all in all. Don't the boys look so grown up all of a sudden? The'll be SIX in a few weeks! 1/3 of the way to legal adulthood. The boys like school, and are learning a lot. They are lucky to have science, art, and music in addition to gym and media every week (as not all schools do, anymore), but are also extremely into reading and math. They are both reading quite well, and our library trips now include a lot of leveled readers in addition to the Dr. Seuss, fairy tale and nonfiction fare they adore. I have very mixed feelings about kindergarten being the "new first grade" as it is these days, but thankfully, my own boys seem to do well with it and enjoy the more academic approach. There are kids in their classes who would have benefited from a year of the kindergarten of 20 years ago, I think--it's an awful lot, so soon. It helps that the Montessori approach is so hands on-- the manipulatives are really engaging -- and that they do have some control over what they're doing for some of the day and get to move around quite a bit. My boys are so very tactile, which can be a problem at times, but at their school, that can also be a strength. When I pass Olive*r's classroom on my way to volunteer in No*ah's, he is always deeply engrossed in a "work", looking quite focused and content, as is No*ah in his. The kids are sweet to each other, mostly, with lots of encouraging each other and hugs goodbye at the end of the day. On Friday, they are having an "in-school field trip"; the Co*mo Zoo is bringing a couple of live penguins right into the classroom and doing a presentation on Antarctica.

The winter has turned out to be quite brutal, and it isn't over. We've been sick a ton, as has everyone one we know, it seems. Viruses just spread so nicely when everyone is cooped up together all the time! Ollie had one night in the hospital for asthma a couple of weeks ago. We've had two good blizzards, and many more very cold days interspersed with snowfall. There are huge piles of snow all around the house, as our bungalow style of house is prone to ice dams and we have to rake the snow off of the roof. After the first blizzard, roofs all around our 1920's bungalow neighborhood leaked and caused major damage inside. We had a smallish leak as well, and now we're trying to prevent a basement flood when the thaw comes. Others will have it far worse, though - major flooding is predicted for this spring in many parts of Minnesota, including St. Paul. We're not in a flood zone, thankfully, but are nonetheless praying for a slow thaw.

Those who Faceb*ook with me know that I'm pretty good about writing down what the boys say, lover of words and humor that I am. Below are some to share with you non-Faceb*ookers:
___________________

Oliv*r: "I still sometimes worry that gravity will end." No*ah, "That won't happen. But if somehow it does, let's hold hands, quick."

I asked Ollie where he got the idea for one of his "space adventure" drawings. He said, "From inside my 'magination. There's some really good stuff in there."

I have a sleeping little guy cuddled up next to me in our bed as I catch up on work. He had a bad dream. Lately, I keep thinking about how these tender moments won't last forever, and find myself being more patient with the need for reassurance, the band-aids for dubious injuries, a boy between us in the bed after a bad dream...

Found this next to No*ah's bed, after he spent a couple of happy hours by himself upstairs. He seems to have a head start on knowing thyself...

Oh good heavens - I am not ready for round II of Snowmaggedon. Blech. Time to start the seeds and dream of spring.

We walked past a decommissioned cannon near the Falls yesterday, and No*ah asked, "were people really tiny back then?" Because it didn't seem quite wide enough to shoot people out of at the circus.

No*ah: "Do chickens ever wish they were as smart as people?" Me: "I can't prove it, but I really don't think so." No*ah: "That's probably a good thing. Because we take their eggs and sometimes even eat them and everything - they might figure out a way to prevent that from happening."

Loved the Hiawatha Heartwarmer (winter festival) experience of standing on the lake making snowmen with about 50 other smiling kids and adults in the warm sunshine. Glorious.

We were talking about when the boys were babies someone dropped a huge box of diapers on our front step anonymously. Oliv*r's eyes grew wide, and he asked, "Did you need them because you were so busy you couldn't even stop to go potty?"

I got distracted by Oliv*r when I was decorating the cake, and wrote "O" for Oliv*r instead of "J" for Joel. Thankfully, I gracefully improvised...

Dentist today - 2 cooperative and polite boys, no cavities. Oliv*r wanted to know if there was anything he could do to move things along and finally get a loose tooth. I ♥ our dentist.

Me, in the car: "You're kinda quiet back there, No*ah." No*ah: "I'm just reading things as we go by them. Could you please slow down a little bit?"

Oliv*r: "I had a dream last night that the number 14 was made into an odd number somehow. It was TERRIBLE!"

No*ah: "I think people need to make up their minds. They can either *say* the d in Sun*dseth, or I won't write it in!" Oliv*r: "Yeah!"

Windchill of -25 to -35. My neck gator froze to my nose. Send tea.

Some kids count sheep. No*ah...recites the life cycle of the ant.

Oliv*r: "I think it's time for some tea and crackers, and some jazz, and maybe some drawing or a game of Uno in my slippers." Such a little aesthete - he has all his senses covered...

Oliv*r: "I just don't understand why *every* computer in the media center broke on the same day!" We had a little talk about the meaning of "the network is down". He asked if I got to watch a Magic Schoolbus movie at work when that happens too.

I have Magic Schoolbus-obsessed children. The original J. Cole ones only, though --none of those new smaller dumbed-down ones. Fun, though I'm not so fond of being "The Frizz" in their Magic Schoolbus games. Sensitive subject, the frizz.

Oliv*r: Mama, did you know that there are music people called "The Bare-Naked Ladies"? Me: Yes, I did. Oliv*r: I don't think they must play their music in the wintertime.

Methinks that perhaps only thing more beautiful than a man folding laundry is a man teaching his son how to fold laundry...

No*ah: "Ollie, my favorite thing to do in the whole world is to play with you. And read books." Oliv*r: "I'm too young to know what my favorite thing is yet."

The Works

We've been having a lot of fun at The Works, a hands-on engineering museum for kids. Here are some Facebook pictures you can see even if you aren't on Facebook.

It's been such a particularly cold, snowy winter this year - and this is the point where it always hits me that we still have a couple of months to go before it gets all that much better. This week, it's barely been above zero. Ugh. So we really appreciate these cheery indoor places where we can use our minds and our bodies!

indoor fun

As our winters are about 5 months long in Minn*sota, we always have to find lots to do indoors. In addition to our usual repertoire of crafting and doorway-climbing, here's some of what's been keeping the boys busy after school:

Puzzles, of course.

Every year for the last several years, we've put our tree outside still in the stand after Christmas (and after removing the ornaments), then create ornaments for the birds. We've done garlands, and pine-cones covered in lard and birdseed. It's a nice way to enjoy the tree and share it without all the pine needles in the living room!

The boys have ways of spending time with grandparents too. Grandma often stops by first thing in the morning and walks the boys to the bus on her way to walk at the YWCA. The boys also visit there, and it's so nice that they're only a couple of miles away. To visit with Omie and Opa beyond traveling to see them, the boys Skype and get read to through Readeo - which I highly recommend if you have young kids with far-away relatives that want to keep in touch. The picture of them above is of them being read to by Omie. She reads the book aloud and turns the pages, just as she would if she were sitting right with them. The boys can see her face as she's reading, and she can see them too. Grandma is a better bet for sitting on their cold feet, though.