Working Towards Walking

IMG_4874Last week I took John Paul down to UVA to see a new specialist in Pediatric Physical Medicine and Rehabilitation (or PMR for short), Dr. Lunsford. He is a recent addition (within the last couple of years) to the Children’s hospital down there, as they’ve never had a PMR doctor that specialize in pediatrics.  Our orthopedist referred us to him to follow.

(Let me back up and mention also that when we saw the Orthopedist right before Christmas, he had John Paul measured and fitted for custom braces for his feet, so that he can train his ankles to point straight when he tried to stand up.  Those are supposed to arrive in the next few weeks and we’ll be working with his PT at school and here at home to build up strength in his ankles and legs.)

img_4716I think it’s safe to say that John Paul’s anatomy kind of goes beyond the scope of a regular orthopedist or physical therapist, and the PMR doc is definitely a beneficial addition to his team.  He was so kind, enthusiastic, and positive.  John Paul was not in the least bit cooperative and wouldn’t let anyone examine him without throwing a fit; but despite that, Dr. Lunsford was able to assess quite a bit just by watching him bend over on the table, use his fingers to play a game on my iPad, and hop around a little on the exam table.

Up until now, no one has ever mentioned to us that there is a possibility of John Paul walking. I don’t even let myself think about that too much because I just can’t imagine how it is possible.  (How does one walk without knee joints and with one leg longer than the other one?) But that didn’t really seem to phase Dr. Lunsford – he started showing us gait trainers and explaining how they help strengthen while keeping him from falling, etc.

John Paul seems so motivated to stand up and will even take steps, if he has someone holding on to him.  I think as he gets older and continues to observe other kids, this desire is just going to get stronger.

IMG_3838So….I guess we’re going to go there.  We’ll be going back soon to get him fitted and measured and pick  out a gait-trainer that will work best for him. It takes a while for it to arrive -up to 6 months – so he was anxious to get us started with the process.

Like everything else up until now, we’re just taking it one day at a time and letting John Paul guide the pace. He’s pretty resistant to direct therapy; in fact, at his school IEP meeting his therapists all decreased their time with him this semester because he is being so stubborn.  They are still going to work with him, but they will act more as a consultant with his teacher rather than taking him out of his class and working with him one-on-one.  I’m fine with that, as long as he keeps making progress — and he seems to learn more and do more just being around other kids anyway.  So we’ll see how it goes.

My siblings and I have been playing around with Instagram stories lately — I tried to make a ‘story’ of our visit to UVA and did a terrible job of explaining the whole thing in 15-second increments.  And I of course was holding it vertically so that kind of stinks. But I saved it (I know, the idea of I. stories is that it disappears after a while, but i think that’s dumb) and pasted it together so someday I can show John Paul what a stinker he was (and what a compassionate, sympathetic mother I was, haha).  Here it is in case you missed it:

Dr. Lunsford Appointment from Jillm816 on Vimeo.

2017 Reading Challenge

I only got a little over halfway of the books read for Modern Mrs. Darcy‘s 2016 Reading Challenge.  Nevertheless, I decided to give it another try this year, using a different strategy by picking books that I probably am going to read anyway. Is that cheating?  Maybe.

There is another challenge available to those who want to read “for growth” in 2017….but I know that would just set me up for failure.  We set the bar nice an low and strive for mediocrity, and usually succeed.

reading-challenge-02

Here’s my list, and let me know if you want to play along.  .. I’m always looking for book recommendations!

  • For the cover:
    The Evolution of Calpurnia Tate, Jacqueline Kelly
  • Un-put-downable: The Martian, Andy Weir
  • Set where you’ve never been but would like to visit (Cornwall):Ross Poldark, Winston Graham
  • You’ve already read: Leave It To Psmith, P.G. Wodehouse
  • A juicy memoir: Wodehouse on Wodehouse, P.G. Wodehouse OR Hold Still, a Memoir with Photographs, Sally Mann
  • About Books or Reading: The Bookshop on the Corner, Jenny Colgan OR The Storied Life of A.J. Fikry
  • In a genre you usually avoid (non-fiction, historical): George Washington’s Secret Six, The Spy Ring… Brian Kilmeade
  • You don’t want to admit you’re dying to read: Is Everyone Hanging Out Without Me? (And Other Concerns), Mindy Kaling
  • On the backlist of a new favorite author: Kate Morton, The Secret Keeper
  • Recommended by someone with great taste (by friend Sherry): So Big, Edna Ferber
  • I was excited to buy but haven’t read yet: All Creatures Great and Small, James Herriot
  • On a topic I already love (food): Bread and Wine: A Love Letter to Life Around the Table with Recipes, Shauna Niequist

Recent Netflix Picks

ill-have-what-phils-havingI’ll Have What Phil’s Having – I can’t remember how we discovered this, except I believe we caught the second half of one episode on PBS and then found that all the episodes were on Netflix as well.  Phil Rosenthal was the creator and head writer for Everybody Loves Raymond, (which I actually never really watched much of).  However, Phil is a very funny guy and has a love for good food and beautiful places, so it turns out to be a great combination.  He narrates his travels to different cities and tries out their food and then comments about it.  Sometimes it’s weird, sometimes it’s slightly awkward, and sometimes it’s sublime. But it’s always entertaining. And he meets up with celebrity friends sometimes. My favorite parts were when Phil skypes his mom and dad and tries to tell them about his travels.  His parents are hysterical — you can see where Phil got his material for Ray Romano’s parents. There are only six episodes right now, but I just read a few days ago that Netflix has picked up the show (which PBS dropped because of production costs) so there is more to look forward to someday.

1 season, 6 [54-minute] episodes

***

the-irish-pub-dvd3The Irish Pub– Patrick and I stumbled upon this one and really enjoyed it.  It is not action-packed by any means, but it is a fun documentary  about the Irish people and their beloved pubs, which are so much more than places to get a pint (although that is certainly not insignificant).  If you like Ireland or have any degree of Irish heritage (and who doesn’t), you’ll find this charming.  Many of the pubs featured are very old and haven’t changed much since they were built. Generations were raised within their walls; marriages contracted, children reared, and lifelong friendships cultivated. Nobody loves telling a story like the Irish, and you see why in this movie.

 

1 hr., 14 min.

***

thecrownThe Crown – I really enjoyed this biopic of the young queen Elizabeth II, (me and the rest of the universe…) much more than I thought I would.  Netflix really pulled out all the stops and produced a beautiful and moving series. It rivals and even at times surpasses Downton Abby and some other dramas like it. The pace is much slower, MUCH slower (there are no dead Turkish diplomats getting dragged into empty estate bedrooms in the dead of the night), with an emphasis on the actors rather than action, but there are some really powerful scenes, especially between Elizabeth and Winston Churchill. My favorite episode was the one about the portrait. John Lithgow is so convincing as Winston Churchill — at least, I thought so… I had never heard the story of this ill-fated portrait, and although the Crown takes some liberties with history, it is still an intriguing story of art, truth, how we see ourselves, and how it may differ from how the world sees us.

I’m glad there are going to be more seasons — at least 2 more– but beyond that, different actors will be cast for the roles of Elizabeth and Philip, which will be interesting!

1 season, 10 [57 min] episodes

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cincoCinco (Jim Gaffigan) – always hilarious. Some of the jokes I had heard from other places – interviews on late shows, etc., but most of it was new stuff to me.  And I laughed out loud a lot. For the most part clean (a couple of off-color jokes but not too bad).

Hilarious bits about binge-watching on Netflix, trying to take donuts onto an airplane, county fairs, how much people love Fall, and of course — his kids.

 

 

1 hr, 13 min

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elstree_1976_2015_posterElstree 1976 – Okay this is a pretty nerdy, quirky pick, but i like nerdy, quirky things; I like “behind-the-scenes” kind of stuff. I especially like to see anything Star Wars related when it has to do with the original movies – stripped down of their CG modifications and all of the hoopla that has grown up around them.  I’m talking about episode IV, model spaceships in cardboard boxes, people dressed in fur costumes and trash cans. Nobody even knew who George Lucas was, for Pete’s sake!  I remember my brother playing with Star Wars action figures when we were little and what a huge revelation it was when he discovered Darth Vader was Luke’s father.  It just was a movie that boys liked, not the massive cultural explosion it is now.

This documentary follows the British actors and extras who had roles in the original Star Wars movie — the actors whose faces are never seen but are now enshrined as movie icons: Darth Vader, Greedo, stormtroopers, etc..  Some of their faces were seen – as rebels pilots or other extras – and they of course had no idea what Star Wars would become — but it didn’t take long for them to begin to realize that this sci-fi movie was different.

“I walked out onto this massive soundstage, full of sand, with this spaceship which I later found out, was the Millennium Falcon at the other end. And I thought, this is quite impressive. Because of course all sci-fi movies in the ’60s and ’70s were B, C, D or E movies– you know, ‘Attack of the Killer Tomatoes’. But I thought, you know, this is quite interesting, well maybe it’s not going to be as terrible as it promised to be.”   -Paul Blake, “Greedo”

The first 20 minutes or so are primarily about the background of these obscure actors, but at about the 25:00 mark they start talking about the movie.  Some fun behind the scenes stuff, fun trivia, deleted scenes, etc.. It’s interesting to see how even the smallest roles, even the extras, are sought for autographs by fans of Star Wars.

This documentary was probably 45:00 longer than it had to be, in my opinion. Maybe I’m just not as nerdy as I claim to be — I mean, I had never even heard of the characters Biggs or Fixer so I kind of felt like a moron.  Actually the documentary kind of assumes that the audience already knows that there was a Fixer character and he was deleted from the film. So this movie definitely has a target audience.  Which wasn’t necessarily me.  Ha.  But I liked it anyway.

1 hr., 41 min.

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chillwithbobrossChill with Bob Ross and Beauty is Everywhere — I’d be remiss if I didn’t mention these two collections of Bob Ross’ PBS show.  Like most everything PBS does, this is not a complete collection of the show, because PBS likes to be a butthead and decide what they’re going to share with people.  So if you see “Mr Rogers’ Neighborhood” on Netflix, you get excited because you haven’t seen Mr. Rogers in years, but then you realize that it’s not really “Season 1”, it’s a hand-picked selection of episodes that have no continuity. Once episode you’re talking about the opera coming up on Friday, and the next episode Prince Tuesday is worried his parents are getting a divorce!– it’s just a random collection of shows that PBS decided to release while withholding the rest of them in their super-secret PBS vault!

So, it’s unfortunately not the complete Bob Ross collection, but continuity is not so much an issue with Bob Ross because he finishes a painting every episode.  I loved Bob Ross and have for a long time — I remember discovering his show in syndication when I was in high school and then mimicking his painting style (which doesn’t work with watercolors, by the way) and then Mr. Butz immediately called me out and told me not to paint trees like that hippie guy with the squirrel. HAHAHA!!  Okay, so Bob Ross was not one of the great masters.  But he sure is fun to watch.  And addicting.

I had this streaming on my laptop one day when I was piecing a quilt in the basement, and Thomas and George were immediately sucked in.  It’s Bob’s voice that first gets you hooked – he’s so soothing and comforting. And then you realize he just painted a mountain by scraping his little knife across the canvas with a blob of paint.  What!  And then you can’t look away.

If your children are driving you crazy, Bob Ross has an amazingly calming influence. Give him a try.

2 collections, 26 [27 minute] episodes each

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If you have a series you’ve really loved on Netflix, I’d love hear —

Looking Back at 2016

I’ve resolved to blog more in 2017, but I’m not off to a very good start, as this post has been sitting in my ‘drafts’ for 4 days now and I’m just now sitting down to write something!  I was going through pictures of John Paul’s year and thinking about how far he has come.  It really has been a great year for him as far as his speaking abilities and his ability to drive his chair around.

Starting preschool in the fall was probably the biggest change and what has helped him grow so much in these areas.  I was so anxious in sending him- how he would respond and how his peers would respond to him, but it has exceeded my expectations in so many ways.

In December we had follow-up appointments with some of his specialists – his developmental pediatrician and his orthopedist.  Both were very pleased with his progress.

The developmental pediatrician was so thrilled with his progress in speech that he told us we can follow up in a year instead of 6 months. He mentioned that John Paul exceeded his usual expectations for a 3 year old with apraxia. This was great news for me to hear, and I have hope that someday you won’t even be able to tell he had trouble learning to speak.

Our orthopedist suggested that we have John Paul fitted for leg braces in order to help him stand for short intervals.  These will be custom formed so that they will keep his feet and ankles in a straight position.  He won’t wear them all the time; he uses his feet for so many other things, like scratching his ears and pushing buttons, so it’s not practical to have his feet all bound up.  But I’m thinking they will be helpful in training him to stand.  It’s really a shot in the dark – he will probably hate them and refuse to wear them – but we may as well try!  His physical therapist at school will spend time working with him in this area as well.

John Paul has surprised us in so many ways already and I’m confident that if we give him the right tools he will continue to amaze us!

I’ll close by posting some of my favorite photos from the year.  Happy new year, and here’s to a fabulous and fruitful 2017!

 

Lesser Known Carols: The Apple Tree

A few years ago, during Advent I used to pick Christmas carols that I thought deserved more airtime and wrote blog posts about them and a little of their history.  You can read the whole series here:

Lesser Known Christmas Carols

It was really the only time I wrote blog posts with any regularity, and I miss those days when I was home long enough to even sit down and write blog posts at all.

But the other day I heard a carol that I had never heard before, and I was struck by the unusual words:

1.The tree of life my soul hath seen,
Laden with fruit and always green:
The trees of nature fruitless be
Compared with Christ the apple tree.

2. His beauty doth all things excel:
By faith I know, but ne’er can tell
The glory which I now can see
In Jesus Christ the apple tree.

3. For happiness I long have sought,
And pleasure dearly I have bought:
I missed of all; but now I see
‘Tis found in Christ the apple tree.

4. I’m weary with my former toil,
Here I will sit and rest awhile:
Under the shadow I will be,
Of Jesus Christ the apple tree.

5. This fruit doth make my soul to thrive,
It keeps my dying faith alive;
Which makes my soul in haste to be
With Jesus Christ the apple tree.

And if you read the lyrics, it’s not really a Christmas carol per se, I guess.  But if you are a believer in the significance  of Christ’s birth and why it occurred (which is the whole point of celebrating Christmas in the first place, but a lot of people might not care about that and just happen to like presents and sweaters and eggnog-which are of course all delightful), then it makes sense to sing this song at yuletide.

It is a kind of paean of gratitude to the Savior, after all. This world is a dreary place (despite all the presents, etc.) full of suffering, uncertainty, and death. Nothing here will ever satisfy us or bring us peace in the way which Jesus can.  Our hearts are restless until they find Him — and how lucky we are that God chose to send him to us via Mary in that little form of a baby.

An apple tree seems like an odd thing to equate with Jesus.  I suppose it could invoke that original Tree in Eden which Adam and Eve ate of and condemned the human race. Jesus is the New Adam, says St. Paul and the church fathers, and the Cross has often been paralleled with the new tree of Life to replace the tree in the garden.  In fact in medieval windows they would often make the cross a green color to show that it was life-giving.

chartres-cathedrale-vitrail-crucifixion

Trees are symbols of life; they offer shelter and food and comfort for living creatures. Jesus compared the kingdom of God to a mustard seed which grows into a great and prosperous tree. And, Jesus compared himself to a tree saying, “I am the vine, you are the branches, etc.”

In the beautiful love poem, Song of Solomon, it reads:

As the apple tree among the trees of the wood, so is my beloved among the sons. I sat down under his shadow with great delight, and his fruit was sweet to my taste.

4 He brought me to the banqueting house, and his banner over me was love.

The carol was written in the early 1700s as a poem and soon was published as a hymn.  Here is a beautiful version of this carol as sung by the Kings College Choir. Enjoy! And happy Advent!

5 Instagram Accounts That Make Disabilities Beautiful

October is (among many other wonderful things) Disability Awareness Month [it’s also Down Syndrome Awareness Month, Pregnancy and Infant Loss Awareness, National Respect Life Month, National Sewing Month, and National Pizza Month, along with many other causes dear to my heart — can we spread them out, maybe??  Maybe we could put some of these in July, whose only cause, although completely worthy of commemoration, is National Ice Cream Month. Who’s in charge of this stuff? But I digress.]

It’s no secret if you’re a faithful reader of this blog that John Paul changed my life.  I love him forever and thank the good Lord that He had John Paul in mind for us. This is in no way to diminish the love I have for my other boys, but it has in a funny and wonderful way enhanced that love, too.  Hard to explain, but love is funny that way.

 

There is a growing awareness of the strength and integrity of those with disabilities.  I’m sure it’s not only because it’s more on my radar due to John Paul.  I think the paralympics got more attention this year with more coverage than ever before; there are increasingly more people with disabilities highlighted on TV shows and commercial advertising, and a new sitcom about a boy with cerebral palsy (I haven’t seen it but in seeing the trailer I could see that it would resonate with a lot of parents with special needs kids!).

It’s a complicated world, not only because of the complexities and varieties of the disabilities themselves, but because of the way the world reacts to Disability.  It’s hard to find the balance between making accommodations without isolating them or making them feel like a burden, and treating them with kindness and charity without being patronizing or feeling sorry for them.  In the end, it’s all about treating them like a person — not ignoring or whitewashing over their disability, but acknowledging it, and then listening to them and being present to them.

In honor of Disability Awareness Month, here are 5 of my favorite Instagram accounts that love, respect and highlight persons with uniqueness:

@sitting_pretty

she is real and funny and happens to also be in a wheelchair.  Her photos are often bittersweet as she talks about obstacles she encounters trying to maneuver through the world. She recently wrote an amazing article about Ableism and its silent and devastating affect on the disabled and the culture at large, which you should read here. “Ableism” — it’s a thing….I don’t usually like labels, but this is one which I think is out there and glossed over pretty widely.

@etst

I really follow Kelle Hampton for her beautiful photos and her eye for design, but her kids are adorable, which just makes it all the better.

@thatdadblog

My sister told me about this guy who dressed up his baby like Elf on the Shelf and put him in all of these photoshopped photos doing hilarious mischief all over the house.  Then I found out he had a son with Down Syndrome named Wil and that Wil could fly….and I was hooked.

@luckyfinproject

Lucky fin!  As in “Finding Nemo!” This is probably the way I most often explain John Paul’s little arms to kids who ask what “happened” to them. (What happened to his arms?!) Except that JP has 2 lucky fins instead of just one.  This feed made me realize how many people out there have limb differences.  They are all over the place and it’s not keeping them from doing what they want to do.

@yooocandoanything

“Disability is a Gift”  — definitely a great place to find some inspiration and read some amazing stories. Sometimes the stories don’t have happy endings, and sometimes the stories are hard to read.  But they always speak to the strength and resilience of the human spirit.

 

 

My Etsy Shop is Having a Sale!

 

So I’ve decided to close my etsy shop at the end of the year. I’ve been thinking about it for a long time, and I have reached the point where I’m at peace with my decision. I have not had the time or the motivation to keep up with posting new items, paying fees, and most importantly, promoting the shop, which is probably why I haven’t made any sales in a while!

I still love to make things, but I would rather make things as gifts or for my own children, without having to worry about whether or not I can make it profitable!

So…in the coming months I’ll be trying to empty out my boxes of inventory. I’m planning on signing up for some craft fairs coming up in the area and discounting the items in the shop. Here’s a great opportunity to score a great deal on handmade items for you or for a little person in your life.

All you have to do is enter coupon code FALLSALE at checkout and you’ll receive 40% off your order. EVEN QUILTS! I already price items at a very reasonable point, so it’s a great deal. You will have to pay for shipping with your purchase, but if the total when I ship comes out less than when I’ve charged you, I can issue you a refund.

OH! I should also add that all the proceeds go right into a fund for John Paul and home adaptions that we need to make for his wheelchair (the elevator is the next big expense we will have).

Happy shopping! You might hurry over there before my mom snaps everything up!

georgiepie.etsy.com

~~* THANK YOU!! *~~

JP Starts School

Lulu's 1st Birthday Party

There have been lots of new and exciting things going on in John Paul’s world. He completed his first week of pre-school last week! I was not really prepared for it, mostly because who in their right mind starts school this early in August?! Actually, as it turns out, a lot of completely normal people do. But it rocked my world and I’m still adjusting.

John Paul, however, took it amazingly well. He had met his teachers back in the spring, and was familiar with the classroom, but I was not sure how he was going to react to going back there. He was SO excited. He was smiling and happy and gave his teachers a big ‘hi’. I was a nervous wreck dropping him off on the first day, but he loved it.

On that first morning, I anticipated taking him in by myself. It was an early morning, after all, and we are still most of us in Summer Mode. Sam, however, would have none of that. He wanted to go too so he could walk John Paul into his classroom and meet his teachers. There was no way he was NOT going to be a part of this! Well, as Sam was getting dressed, Andrew woke up and asked to go too, and then it snowballed from there and before I knew it, we ALL OF US were driving John Paul into school, even Patrick. John Paul and his support staff. TEAM JOHN PAUL!

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On the first day, I left JP’s stroller at school so he could be transported from place to place. By the end of the week, though, I was able to have a lift installed on the back of our minivan (thanks to a couple of very generous sources, you know who you are and we love you and thank you!) so now we transport his little power chair to school. (And he doesn’t have to take the bus.) He did great – he drove it right into his class like a champ. The trouble actually came when it was time to leave school for the day and he didn’t want to leave!

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This is what the lift looks like.  So much for blending in. On the up side, though we can usually get a great parking space…

Therapy starts this week, and he’ll receive PT, OT, and speech in rotation on the days he is there. It will be exciting to see his progress in the weeks to come!

I’m hoping eventually that panicky feeling I get when I think of him in school will go away.. maybe?

“Differently Abled” & The Trumpet of the Swan

trumpet-swan-marcellinoThe boys and I chose E.B. White’s first children’s book as our summer read-aloud selection.  I didn’t really know what it was about, although I was familiar with it (I mean E.B. White only wrote 3 children’s books, and we’ve read the other two). I soon realized that the book is about a little swan born without a voice who learns to use alternative devices in order to communicate.

Well, of course as a mom I immediately started relating to my own little swan who has his own version of a speech defect and is learning to use adaptive communication. Throughout John Paul’s little life journey we are constantly witnessing his ability to adapt.  And at times his adaptions actually become strengths.  True, there is a lot that he is still unable to do (walk, for example).  But in exchange for that he can drive around hairpin turns with a pretty complex piece of machinery.  At age 3.  True, he can’t form the thoughts in his head into words. But he listens and understands more than any of my other boys did at age 3.

So I found this little passage of the book, at a moment when Louie’s very verbose father is trying to console Louie about not being able to speak. He sub-consciously is trying to come to grips with the reality himself, for his is much more devastated  by the realization that Louis is ‘defective’ than Louis ever is:

“Remember that the world is full of youngsters who have some sort of handicap that they must overcome. You apparently have a speech defect.  I am sure you will overcome it, in time. There may even be some slight advantage, at your age, in not being able to say anything. It compels you to be a good listener.  The world is full of talkers, but it is rare to find anyone who listens. And I assure you that you can pick up more information when you are listening than when you are talking.”

“My father does quite a lot of talking himself,” thought Louis.

His dad goes on to promise Louie that he will make sure Louis has the tools he needs to excel in his life. (Unfortunately that means breaking into a music store and assaulting the storekeeper to steal a trumpet, but that’s beside the point)

The point is, Louis goes on to make some pretty impressive accomplishments for a swan. After a while nobody really even notices that he doesn’t make swan noises.

At some point a year or so ago, I noticed that some people in the special-needs community used the term “differently abled” instead of “disabled” when referring to their children. I liked that idea – it seemed to fit John Paul perfectly. I guess I would much rather focus on the positive than on what he’s missing.

But then started seeing reactions and fallout about how the term is overly – politically correct.  It claimed that saying “differently-abled” glosses over the reality of the disability and is like denying that the person has real difficulties. I suppose I see their point.  I acknowledge that each disabled person has his own challenges, and that under certain circumstances, the term “disabled” really is a more accurate term.  I don’t think using one term necessarily replaces the other.

I just don’t see it as a denial; at least not in John Paul’s case. On any given day, there is a good chance that John Paul will hear a comment or impertinent question (however good-natured) from a stranger that emphasizes the negatives of his appearance. (At the pool: a girl asks where his arms went, and after I give her an answer remarks, ‘oh, he’s one of those people. i’m sure glad i wasn’t born that way.’) It’s natural to wonder about his limbs, but it’s sort of astounding how often people feel it is okay to ask what’s ‘wrong’ with his arms, even though we are total strangers.  (What happened to ‘hello, it’s nice to meet you?’ first?)

In other words, John Paul doesn’t need any reminders that he’s disabled. He doesn’t need anyone to point out that he’s missing some bones in his arms or that he does run around like his brothers.  He knows.  Tactless people remind us all the time. He might, however, need a little positive encouragement that he is wonderfully made.  He might need us to reinforce the idea that he is a treasure, and that he can do things – he just does them differently.  And if we use the term ‘differently-abled’, it’s because it’s the truth, not because we’re in denial or because we’re afraid of offending him.

On a side-note, this weekend the Wimbledon finals for mens’ and womens’ singles.  What you might not have seen covered were the finals for the mens and ladies wheelchair doubles.  I admit I didn’t even know these tournaments existed until yesterday.  (You can watch highlights from last years’ final here to get idea of the amazing athleticism of these individuals)  I don’t know about you, but the term ‘disabled’ doesn’t seem quite adequate here.

Anyway, I guess I’m kind of sounding like a bristling mama lion, but you get the idea.  Everybody wants to be known and loved beyond what is initially, outwardly perceived.  I would argue that disabled persons, on top of their own disability, are automatically at a disadvantage in this area because people don’t know how to or don’t want to overcome the barrier.  The idea of interacting with someone who is disabled can be intimidating — you might not know what to say, you are afraid you’ll say the wrong thing, you don’t want to offend but you want to be sincere– and oftentimes taking the focus away from the disability and focusing on strengths eliminates that barrier.

After all, John Paul is a little boy, ultimately.  He won’t eat anything green or anything mushy. He throws fits when he tell him no.  He loves trains and cars and dinosaurs. He has a little blankie he likes to sleep with.  And he just wants to be friends.  He might not be able to run but he wants to have a race with you up and down the driveway. He might not be able to say your name yet, but he will listen to whatever you have to say.

We are not the sum of our weaknesses and failures. We are the sum of the Father’s love for us and our real capacity to become the image of his Son — St. John Paul

Update: Halfway through MMD’s 2016 Reading Challenge

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The year is a little over halfway gone, and amazingly enough I am still plugging away at my list of books for 2016.  The good news is, I’ve read half of the books on the challenge list.  The bad news is, I’ve read through all of the books that I actually wanted to read anyway, and what’s left are the ones I’m not really crazy about.

Also, it seems like I find new books almost every day that I’d rather read instead! So the challenging part is still ahead of me.

Here’s my take on what I’ve read so far:

A Book Published This Year:

This was only the second novel published by this author, and it was very different from her first book. I didn’t like it nearly as much as Major Pettigrew, but it was still enjoyable.  It reminded me of too many other stories, thought, and the sentiments of some of the characters seemed a little too modern and jaded for a pre-Great War world.

A Book You Can Finish in a Day:

Loved it.

Softly the Angelus sounded and over the roofs of the village / Columns of pale blue smoke, like clouds of incense ascending, / Rose from a hundred hearths, the homes of peace and contentment. / Thus dwelt together in love these simple Acadian farmers, – / Dwelt in the love of God and of man. Alike were they free from / Fear, that reigns with the tyrant, and envy, the vice of republics. / Neither locks had they to their doors, nor bars to their windows; / But their dwellings were open as day and the hearts of the owners; / There the richest was poor, and the poorest lived in abundance.

Evangeline is Patrick’s favorite poem and I can see now why it is.  It is a tear-jerker, though — there is a profound sadness in this story, but there is beauty in sadness and it is not without hope.  The world of Evangeline is fading away, if it even exists anymore – a world of forgiveness, self-sacrificing love in suffering and patience, and the belief that this world is not all there is. But ultimately, this book is about hope.

A Book You’ve Been Meaning to Read:

I liked reading Alice in Wonderland, although I found myself wishing that I could read it without having seen the Disney movie.  I wanted to appreciate it for the impact it had when it was first published. In fact I spent most of the time thinking about all of the stuff that Disney took out (the griffin) or added in (Tweedle Dee and Tweedle Dum). It was hard to read it with a clean slate. I loved the tea party scene, which was more subdued an very hilarious.

A Book Chosen for You by a Sibling:


This book was hard to put down and I was sad when I finished it.  Although at times the author was a little over-the-top poetic, I thoroughly enjoyed his descriptions of people and places of Rome.  This is basically his journal from the year he spent in Rome with his family, trying to write a novel but never being able to write anything but his experiences of Rome. He makes some pretty astute observations from a non-religious perspective about the Church and the papacy; although he is far from ‘getting it’, he appreciates something about its beauty and grandness.  [It left me thinking how much work the Church has to do educating people about its liturgy, history, etc.  (Easy for me to say, right?)]

Before electricity, before the umbrella pine out the window was even a pinecone, when the night sky above the Janiculum was as awash with stars as any sky anywhere, Galileo Galilei assembled his new telescope at a banquet in this very garden, just beneath my window, and showed guests the heavens.

I generally try to keep a reading journal and write down memorable quotes for the books I’m reading.  For this book, I found myself photo-copying whole passages and taping them into my journal.  It was just so beautifully written. (I noticed a lot of negative reviews on Goodreads of people who couldn’t stand his wordy musings and thought he tended to go on and on.  I guess he was kind of long-winded and maybe a bit overly flowery, but it didn’t bother me.  Maybe because I love Rome so much. If any place deserves flowery language written about it, it’s that place.)

A Book You Own But Have Never Read:

This book.  Oh, this book.  I chose this book for my Lenten reading.  It is so, so good.  It is so simple, but so deep.  You have to give all of your undivided attention to this one.  Benedict’s writing is so simple and direct that you miss the profundity if you read it distracted.  I had to set aside special time in the morning to devote to this one. Favorite quote:

…The proclamation of the Gospel will always be marked by the sign of the Cross – this is what each generation of Jesus’ disciples must learn anew. The Cross is and remains the sign of the Son of Man: ultimately, in the battle agains lies and violence, truth and love have no other weapon than the witness of suffering.

A Book You Have Read At Least Once

This was my third time reading Persuasion.  Reading Jane Austen’s novels a second and third time, you notice a lot of details about the characters and what’s going on in the background, since you don’t have to focus on what’s going to happen. Since I already knew where everyone was going to end up, I noticed that a lot of the dialogue had underlying meanings.  I noticed how much they discussed class and society and moving around in it and how obsessed they are about it.  They discuss it all the time, and the way she satirizes certain viewpoints is hilarious. I appreciated the genius of the author a little more this time around.  Sure, I love a good love story; but sometimes I wonder if most people who read Jane Austen’s books for the hot guy and never get past the wet shirt? I’m glad I read this again; I think there are certain books that you just have to read over and over.

A lady, without a family, was the very best preserver of furniture in the world.

Well, that’s it for now.  Now for the hard part – the banned book, the intimidating book (still intimidating me), the book I should have read…. Here goes nothing!