Book review: Holy Thursday



One of the most beautiful books ever written (in my opinion) on the Eucharist was written by a French writer and diplomat in the 1930s, reminiscing about the Holy Thursday liturgy of his childhood. It is just under 100 pages and a fairly quick read, so it is not impossible to read it in a couple of sittings. I know a few people who try to read it every Holy Week as a preparation for the beginning of the Triduum and that lovely celebration of the Lord’s Last Supper…

you can read the rest here at Families Fully Alive.


John Paul is 4!

Today our little guy turns 4, and I can honestly say that the past year has flown by.  And yet when I look back I’m astounded by how much progress John Paul has made since his 3rd birthday.  He’s now been part of our family for as long as we were in college, which is funny to think about.

Lots and lots of ups and downs in the past four years….but mostly ups!  This year the big accomplishments were starting preschool, learning to swim (or at least beginning to), maintaining near-normal platelet levels (75,000-100,000!) and TALKING.  I never would have guessed on his 3rd birthday that he would be speaking in sentences one year later.

My mom and dad are in town to celebrate with us and we’ll be extending our celebration into the next week with some of John Paul’s friends.

It wouldn’t be the same without our little yearly ritual of a birthday video (now a tradition on this here blog).

I wanna try even though I could fail
I won’t give up, no I won’t give in
Til I reach the end and then I’ll start again

John Paul is 4! from Jillm816 on Vimeo.

Working Towards Walking (Part 2)

We have met with a PT at UVA Children’s Hospital to see if we can fit him with some kind of gait-trainer or walker.  This will help him at least develop his leg muscles and hip extenders to help him bear his own weight.

Up until now, his main mode of transportation is scooting around in the sitting position, and he bends over so much that it is very unusual for him to have his legs out straight.  He automatically wants to bend at the waist and fold up in half.  We’re hoping that with the foot braces and the gait trainer, he can try to brace himself on his leg and teach himself how to propel himself forward using his legs.

Of course, this is the grand plan in our minds, but John Paul has a completely different plan. It’s like telling a dolphin you’d like him to scoot up on dry land and start hopping around on his tail.  He’s just not going to do that so easily.  Besides, JP thinks he gets around just fine, why the heck are we strapping him into this prison and making him immobile?

All of these things are just in the beginning stages and right now we’re just kind of throwing around ideas.  It’s becoming clear that there’s not going to be a quick fix but that it will be a long-term process of trying things and seeing what works and what doesn’t.

One of the huge obstacles is the fact that his left leg is so much longer than his right leg.  For awhile the gait-trainer just went around in a circle because he was just pushing with one leg! Down the road, we’ll see about lengthening it with surgery.  But for now is there a way to help him use that left leg and develop those muscles?  He tends to favor his right leg when he’s hopping and sitting up and bracing himself to stand.  These are things that PT will be working on.

The dilemma for me, as his mom, is trying to figure out how much I want to push him in one direction, how much I should just let him do what he wants, and how many devices I really want to accumulate trying to give him mobility.  Part of me says, “try all the things!!” and the other part says, “a lot of that is going to be a waste of time and $$”.  But I don’t know what will work and what won’t, at this point, so it makes the decision that much harder.

The PT, who is an absolutely lovely person, is going to try to get us some kind of loaner walker device to try it out before we make the investment.  She is collaborating with the guys from prosthetics to see if they have any ideas about temporary solutions to make his right leg longer (special shoes?) And in the meantime she gave us some exercises for JP to try out to strengthen and extend his hips the opposite way – lie on his tummy and lift his legs up, etc.

It was an exhausting appointment; John Paul cried most of the time, and I came away overwhelmed.  But the take-away was that there are a lot of people out there who want to help, who are excited by the challenge, and that whatever John Paul does ultimately end up doing, we will have a support team to be there for him.

For now, though, we are going to take naps.  and have some chocolate.

(crap, It’s Lent. Never mind about the chocolate.)

IMG_5092 2

It Never Rains In Southern California

…unless, of course, you plan a trip months in advance to visit friends you haven’t seen in 12 years.  In that case, let me warn ya: it pours.

Man, it pours.

Joannie and I planned a girls’ weekend to visit our long-time pal from college and her sister and mom and dad.  The Peters are such a tight-knit, lovely family that when you befriend one of them, you befriend all of them.  And it’s not long at all before you feel like part of the family. At least that’s how we felt.

It’s one of life’s rare gifts to have a friend that you can just pick up where you left off so many years later. I have to admit that most of the friendships I made in college have kind of dwindled or faded or, worse – had a difficult fallout that was probably my fault, although my memory is terrible now and I can’t remember the reason. Another one of Life’s gifts is a poor memory when it comes to those kinds of things, I guess. Mainly you just move away or get married or get a job, and your life takes you someplace else, meeting (or birthing) new people fill your life up, and those friends that you saw every day turn into people you ‘keep in touch’ with occasionally.

Anyway, Therese and I picked right up where we left off and we laughed like crazy and reminisced and shared inside jokes and drank margaritas (not necessarily in that order). Her sister Bernadette is in musical theatre and has a lead as Rosie in the musical Bye-Bye Birdie, so we got to go to her Opening night. Joannie had a request to visit the Reagan Presidential Library in Simi Valley, so we did that one day (the one day it didn’t rain), and we also visited a couple of the California mission churches.

The weather definitely did not cooperate and so most of our sight-seeing was done from inside the car (sad face).  Therese lives a just a short distance from Disney and Warner Bros. and Universal so we drove by their huge studios several times just driving around. We drove through Hollywood but couldn’t see the famous sign on the hill because of low-lying clouds. One day it rained so hard the roads started to flood and they had to shut down I-5 because cars were stranded in floodwaters up to the doors of their cars.

Despite all of that craziness and drama, we managed to still salvage the weekend and eat at some great restaurants and see some sights (even though it was from the car).  We went to this awesome little tavern called the Tam O’Shanter that was a favorite spot of Therese’s mom and dad when they were dating…..and also of Walt Disney and his animators back in the ’30s and ’40s (they make an amazing mac n’ cheese). Best of all, though, we got to be with each other and talk, which I missed so much. Texting is nice, but it’s not the same, no matter how many emojis you use.  I just loved being in the same room with my friend again.

California Trip 2017 from Jillm816 on Vimeo.

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.


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


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


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.


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


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.


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:


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.


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.


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.


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.


“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.