Unlikely, Indeed!

Christmas Eve has always been a special night. New outfits, carols by candlelight, anticipation for the morn. This year, however, challenged our ability to revel in all the joys Christmas brings. Papa wasn't home.

Christmas Eve came, and we all hustled and bustled amidst concern for Dad. Our church service was at 4pm, and it was going to take a Christmas Miracle to get the Barclay5 there in time. David and I toyed with the idea of not going at all. But he suggested we get ready and surprise Papa, bringing Christmas Eve Service to him, bedside at the hospital.

With renewed excitement, everyone cooperated, dressed and loaded into the car. We discussed our plan: the kids would go in the room first, we'd sing several Christmas carols and hymns (I have a book, thankfully), read the account from Luke, and close with Silent Night.

In my minds eye I knew my Dad would be thrilled. But I never anticipated the beauty that would transform a stark-white, lonely room into a Cathedral of sweet praise. We sang with such joy, my dad wept like I have never seen before. It was joy, and gratitude, and humbleness, and a holy peace all mixed together and flowing without restraint. What a gift for us all. Christmas came in an unlikely place.

We gathered ourselves, wiped tears, hugged, kissed and went on our merry way to dinner awaiting at Mimi's. I was quite shocked to realize as we opened the non-sound-proof door that an audience had gathered - Christmas had come for them, too, through unlikely (and somewhat out-of-tune) voices.

But isn't that just how Christmas is. Christ, God's son, came to us in human form in the most unlikely of places - a lowly manger. Christmas came, and still comes, no matter where we find ourselves. Sometimes, we just have to look!

Papa came home this evening! Our post-Christmas gift - and my number 152.

I'll Have a Blue Christmas..

without my Dad home. Sadly, Papa had to go back to the hospital this afternoon. Possibly an infection, his sugar levels are HIGH, and a list of other issues. Please pray, if you can.

Mimi insists that the show must go on. So, to that end, we will all have dinner Christmas Eve and take turns visiting our guy.

My dad is such a sport. On the phone with my mom, asking how daddy is doing, his response, "I feel good!"

Just love him so!

Reasons to Smile...

Maeve and Myles had a Snow Day, reason enough. We live real close to my in-laws so Maeve was able to do some baking with her Grandma. What precious memories these will be for my girl.



Recently, Maeve saw The Nutcracker Ballet starring my niece, Morgan. Well it has been none-stop-nutcracker-love ever since. Eamon is the honorary audience for all show times.

Myles is not exempt from the performances. It is not clear what role he was assigned by the boss. But the boy has heart - look at that passion.

All that fun aside, the real reason for our smiles is that Papa has come home from an almost 2 week hospital visit. Myles was so excited he said, "Mom, quick call Papa on the cell-o-phone (is that not the cutest, ever!), tell him to come right over to see our tree!"

We will let Papa rest for now, but ah - it is so nice to have my daddy home! Now Christmas can come.

Home for Christmas - my number 151!

Click!

Even a snow storm couldn't keep the Barclays from therapy! I remembered the camera and here is my best effort, in between cheers, of capturing the Mister doing his new thing - standing.

Indeed a miracle!

Getting ready...

And, "1, 2, 3"...Up you go!

Checking out the new view.


That's our boy!



Yeah, we are all so proud!

Even Eamon is feeling the pride, and joy -such joy, but there is a delay with the camera so I missed his most jubilant of smiles.

Ah, worth the trek with 3 kids in the snow. Eamon standing - I really like the sound of that. Number 150 on my gift list, for sure!

This Day Last Year...

Eamon came home from a three week stay in the hospital. He had been admitted because of a respiratory virus that reached a critical point. Eamon was released on oxygen with hopes of weaning, eventually.

I read this quote from Albert Einstein on another blog:

There are only two ways to live your life.

One is as though nothing is a miracle.

The other is as though Everything is a Miracle.

We choose the latter. We choose it every day, sometimes several times a day. There are days when the miracles are obvious, and days when it requires a bit of searching. But they are all miracles nonetheless.

Eamon is 22+months when he wasn't promised one single breath. He is laughing and reaching. Eamon's muscles are strengthening. He can now bring arms to a flex-muscle position and those little leggers are being lifted. This for a boy they thought had a degenerative muscle condition. All miracles.


David had a vision of Eamon standing by Christmas. Even I raised an eyebrow at the reality of such a position in the immediate future.

Eamon has extremely low muscle tone. He is not yet sitting, or even holding his head. Several weeks ago, Eamon was fitted with braces meant to keep his feet at a 90* angle eventually allowing for some weight-bearing on his chubby little legs.

So Friday at therapy, sweet Ms.Lisa and Ms.Tracy (PT & OT) thought to position Eamon so that he could be brought up to a stand. Mind you, he has never had any weight on those legs. With an exuberant, rocking motion and a "1,2,3" up Eamon came. I was watching from the sidelines and could clearly see a muscle contract in his thigh - there is a muscle under that chub! Eamon also pushed against the ground, STOOD for a second (or two), then landed with a great laugh in Ms. Tracy's lap.

We cheered. And after the shock subsided tried again, and again.

I can not explain the beauty of seeing the prince upright. He looked like such a big boy.

Standing by Christmas - what a miracle.

(I will be sure to take the camera aong on Friday. But truthfully, I am so thrilled to watch him - I forget to click:).

One Size Does Not Fit All

I tried to squeeze my post-Thanksgiving/pre-Christmas bloated hands into adorable pink gloves that claimed to be a fit for all. Note the word squeezed. The gloves did not fit. Rarely can one-size-fit-all.

Last week, I had a surprise visit from a friend I haven't seen in apparently 3 years. She wanted to know all about Eamon, an abridged report of all we have experienced in the Prince's 22+ months. The sprint down memory lane forced me to retell the story and be reminded, again, that clearly God knows that one-size is not the right fit. His grace, which incidentally is the theme of our Eamon adventure, is customized. Perfectly molded for each circumstance and new each day. It never loses staying power. It is completely divine. A miracle.

So many are hurting. Cancer looms, death knocks, sickness robs, betrayal stings, finances scare. Sincere pray waiting to be answered. And yet, it is. Grace. Allowing human hearts to rise above what would otherwise destroy. Hearts able to be at peace and experience joy in its simplest, most profound form. That is Grace. Strength that defies - Grace. Vision that can see "plan B" might just be the real plan. Being in the eye of the storm - Grace.

So when asked, "How do you do it - be Eamon's mom?" The answer is I don't, it is all Grace. I couldn't read an other's script. This grace is customized for my "broken road".

Customized-Grace, my number 149!

Glimpses...

from around our house, and reasons to be thankful this season.

Breakfast, Barclay-style, sunglasses and suited up for a pirate adventure because that's just the way we roll. (Number 141)

The reality of trying to get your children to pose.

(Number 142)

Love of another kind!

(Number 143)

My very own Pilgrims.

(Number 144)

Maeve rehearsing Psalm 100.

(Number 145)

The most wonderful time of year. Not really a tree farm, but M&M thought as long as the trees were up on the stand, we were cutting it down. Works for us!

(Number 146)

That face, love it!

(Number 147)

Eamon, laughing all the way, ha-ha-ha!

(Number 148)

Eamon's shirt, I Believe, true in so many ways.

We believe in the sweet wonder of Christmas.

We believe that Eamon is our gift in any season.

We believe that God has a plan for the prince.

We believe in the power of prayer.

We believe Eamon will continue to strengthen.

We believe that God is good, regardless.

Gobble, Gobble!

Happy Thanksgiving from the Barclays!

Endless Thanks

On the eve of Thanksgiving, traditionally a night that hosts church services solely designed to give thanks, I want to cultivate a heart of gratitude.

Throughout my days I encounter many moments where God seems to give me a "wink" but I am not always quick to jot it down, or type as the case may be. Inevitably, I forget those specific "winks". And so the Gift List, intentionally looking for and documenting reasons for my joy.

If I was able to attend such a service dedicated to praise this is what I would have to offer:

133. Impromptu lunch with my friend and our children. Our shared history makes conversation possible above the chaos that naturally ensues when little ones and alarming child are involved.

134. Missing my family -odd intro to this gift, but Mimi and Papa are out of town for the holiday. So even though I might still have been with David's family - something just doesn't feel right. It's good to miss people sometimes because it reminds you of the blessing of closely located family. I don't want to take that luxury for granted.

135. Thanksgiving Chapel Service at M&M's school this morning. Children singing praises, reading God's word, and leading those attending by example set the tone for this holiday season.

136. The Thanksgiving Prayer Walk that followed chapel. It was a small gathering of parents that walked from the flagpole to 7 identified locations around the school building praying for our children and their teachers. It was such a sacred assembly because God clearly is found when two or more gather in His name.

137. My little ones excitedly preparing for a reader's theater presentation they will spring on the family at our celebration tomorrow. Complete with pilgrim hats and props.

138. Eamon's contagious smile, warming my heart with each breathy laugh.

139. A new seat for the prince, albeit a loaner, allowing him to join us at the Thanksgiving table. Sitting up, soaking in all the sights and smells. Laughing, I'm sure, all the while.

140. Days off to decorate, a tradition for the Barclay 5 to deck the halls the day after we feast. And, a little extra exercise to assuage our guilt.

Happy Thanksgiving!

Building Cathedrals

My sweet cousin, Deirdre, sent me a video clip, The Invisible Woman. I found it to inspire what I endeavor to do, and remind me of all the wonderful mothers I am so blessed to know.



My ongoing gift list needs to include the many women who have shaped me, who have built when they thought no one was looking, and who continue to encourage me through my days. Number 131, my mom, thank you for pouring your life out - I hope to be a Cathedral worthy of your sacrifice.


And to all the other women (number 132), who set out to live selflessly, you point me to a better walk. My baby cathedrals are affected by your influence. So "with admiration for the greatness of what you are building when no one sees," I offer my gratitude.

Do Not Exasperate Your Children...

There is a scripture verse that warns against such activity. But, it's not easy to get a good picture.

As a side note to the agony I subjected the Prince to - the hat, a sweet little Irish knit that has been worn by all my babies! I just love that!

Our 7 Wonders of the World!

Well, the 7+ Wonders of our World. My children are somewhat fascinated with the idea of a free public library. So much so that we have started visiting the libraries that dot Bergen County. Some like to travel afar, some like to be connoisseurs, we like to fully acquaint ourselves with the vast circulation of books, DVDs and audio recording in our neighboring towns.

M&M don't quite understand the "free" part. Maeve, the only other card holder in our traveling band, tells me "Don't worry Mom, I've got it this time."

Their feverish excitement reminds me of a friend I used to teach with. Bashi is an avid reader, with a vocabulary that includes words like.......well, they are so impressive I can't remember the one I was going to reference. Anyway, Bashi was mugged several years back. While giving report to the police, she was gripped with absolute terror. Bashi realized her library card was included in the lost items. She had images of the assailant racing to her library, checking out all the new releases and DVDs with no plan to return them in a timely fashion, and ultimately sticking Bashi with untold overdue fees. Clearly, Bashi wins for greatest respect for "the card" and overall devotion to the Library, but Maeve and Myles are in close second.

The countdown has begun for Myles. At age 5, he too will be eligible for a library card. And then, Maeve will not have to always throw hers down for payment.

These Boots Were Made For Walking

Eamon is stylin' with some new orthotics. Exciting because this is the first step toward "standing". It will be a process, but the end result will be weight- bearing opportunities for the prince. These fancy boots, ok braces, will allow Eamon's feet to remain at a 90 degree angel. After an orthopedic clearance, we (drs/therapists) will fit our boy for a "stander". A somewhat Frankenstein looking device that will provide full body support in an upright position. Thus offering Eamon the experience of standing. Being upright allows for greater respiration, digestion, hip maturation and a whole new outlook on the Mister's world. I can hardly wait, but alas wait I must. Truly rehabilitative equipment takes forever to acquire. We are anxiously anticipating the arrival of Eamon's Kid Kart, a customized seating stroller and base, which we ordered June 3rd - yes, that would be almost 6 months ago, but I'm not bitter!

Regardless, we are thrilled for Eamon. He is ready for some new challenges.

If I may be so bold as to ask for a bit of detailed prayer for prince number 2. David and I often wonder if Eamon is uncomfortable, in any way, that we are unaware of. He doesn't speak, and while I feel completely in tune with Eamon and intuitively understand him, there are still some questions left unanswered. One that seems to plague us is whether Eamon has an itch. He would be unable to scratch it on his own, and how could he communicate such a need. I know it sounds trivial, but it upsets us to imagine our little man so uncomfortable. So to that end, David scratches Eamon randomly - a real full body scratch - just in case. And I, everyday during spa time rub and cream every exposed part of his precious body. Due to our diligent scratching, Eamon is probably the least itchy child around, but still a bit of prayer never hurt!

The Prince, in all his glory, watching Elmo - why is it every child loves that furry friend.

How Great is Our God

Yesterday, our church had a media presentation of Lou Giglio's How Great is Our God. It was an incredible display of the Heavens - stars bigger than words can explain being compared to the almost insignificant size of planet earth, and ultimately to the two cells that come together to form each precious person. To hear and see the magnitude of God's greatness, the display of his glory in the sky, and the intricate, coded details of our bodies certainly would convince anyone of His existence. One may still wrestle in our humanity to comprehend the indescribable of the Divine, but you could not rationally deny Him. David and I, along with the whole of the body at church were awe struck, humbled and ecstatic with the absolute wonder and enormity of our God. He has a plan.

And as awesome as God is, He is still intimately aware of us. Our needs, struggles, the places where we lack. Our comparative insignificance but to Him, we are marked in His image, beautiful and so loved.

He has a plan. And so, Eamon was perfectly created for a high purpose and to the Glory of his creator. I can hardly wait to see the unfolding, the majestic display.

"We wait in hope for the Lord; he is our help and shield. In Him our hearts rejoice, for we trust in his holy name."

Get Out the Vote, Barclay Style

It should come as no surprise that the Barclay 5 tend to be on the conservative side. Maeve and Myles have been quite attune to the presidential election. Several months back, while driving in the car, Maeve announces, "Obama, Obama, Obama. Barack Obama, I'm so tired of hearing about him!" To which Myles commiserated.

This certainly set a tone for M&Ms tolerance factor for the other side.

With all the tension the race for the White House has created, I thought a bit of levity was needed. The following story is true, but names have been changed to protect the innocent.

Maeve was busy hanging her coat at school when her friend, we'll just call her Jane, came along. Maeve enthusiastically asked who she (Jane) was voting for. Without hesitation, the unsuspecting girl answered "Barack Obama!". Aghast, Maeve responded with "W-h-a-t, don't you know he lies!" Poor, frightened Jane answered, "I didn't know." Maeve was still reeling when she later relayed the event to me. Horrified that her friend would vote for "Barack-O".

The girls have since settled on agreeing to disagree, and will continue on peacefully their friendship.

I am glad to see such enthusiasm for civics.
So tomorrow, Maeve and Myles will accompany us to the polls and cast "their" vote. No secret who Maeve is voting for! Go McCain/Palin!

Trick or Treat

Just some Pumpkin Fun! This pumpkin, in particular, is our inspiration for Eamon's ensemble. Veggie Tale Pirate, of course.

Myles is "batty" for his mommy.

The end of a hayride with prince #1, Eamon stayed home because it was cold and windy.

Our little "veggie" pirate. Ah Hoy There!

Quick name that picture! Napoleon, anyone?

The crew! Myles is giving two clues: He is red and really fast; yes, he is speed - Lightning McQueen. Maeve is "Bop Bop Bopping to the Top" as Sharpay.

Oh, and for good measure - Clifford, our family dog, is a Yankee!

Cousins! Emma is SpongeBob and Miss Charlotte is a wild chicken.

Everyone. All treats and no tricks. As I write, my M&Ms are counting out their spoils!

Unbelievable, we gave out just shy of 12 bags of candy. Our Hood is the place to be for treat collection!

The Latest Fashion!

Eamon and I spent Monday and Tuesday at the hospital for an EEG. Somewhat routine for the mister. We were warmly greeted by Drs, nurses and staff that we have come to know over the past year. Strange where life takes you, but it made for a more pleasant stay. They even reserved a private room with a view of Downtown and the Hudson River for us - it pays to know people!

The "Good News" is that there was no seizure activity. However, there is irritability in his brain waves that indicate the potential for seizures. Same report really as the last test. So no changes in medication, but a new prayer concern. Often, with infantile spasms, they progress to a more conventional seizure disorder. So far Eamon is good. Spasms are seizures, but a specific type that responds to certain treatments. Full blown seizures would be a new game we'd rather not play.

Thanks for loving Eamon, supporting him, and believing God has a plan.

Mystic or Bust

We headed north over the weekend to Mystic, Ct. The weather cooperated Saturday and was beautiful on Sunday!

Our first stop was the Mystic Aquarium. Beluga whales, sea lions, sting ray touch tanks and more! The kids loved it.

True to character, Maeve has found her latest future occupation - Beluga Whale Trainer Extraordinaire! The girl has plans - big plans.

Myles seems content to enjoy the marine life from a healthy distance. Oh, that smile!

While Eamon and I watched from a safe perch, our M&Ms fearlessly touched, even pet, the African Millipede. Myles wondered what was moving around on its back. Oh, no worries, just mites. Apparently, not the type to come home as a souvenir.

After a nice dinner, we ducked in for an early night. The kids loved staying in our first class accommodations - HoJo, Mystic style!

Then a bright start for the seaport. Beautiful views of the Mystic River were the backdrop of our day. Eamon strolled peacefully enjoying the scenery.

Maeve found her pleasure craft of choice.

Myles found his! He comes from the school of Bigger is Better!

And, I found mine.

We played.

And, built toy boats. Myles was open to Daddy's input for general design and craftsmanship.

While Maeve opted to create solo.

It was fun to be away, no beds to make or meals to prepare. The fun memories made are certainly number 131 on my Gift List.