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!