Postcard Series - Take 2

Good Morning Hilton Head!

A great start to any day is a walk on the beach. Maeve and Myles slept in, so I was able to wander the shore line.

Thoughts and prayers mesh out so easily in the gentle waves.

A late breakfast at our favorite - Harbortown Bakery! And then it was off for a bike ride.

Myles and Uncle Tim riding a not-so-straight line.

Aunty, always looking fabulous!

Herself, taking in the sights.

Some of the sights.

Across from the Light House

Lunch and back to the beach/pool. Lots of laughing and relaxing.

Uncle Jerry and Aunt Colleen, always ready with a pose.

Our very own Merman.

Myles, taking a break from digging.

Look what Maeve found...more reasons NOT to swim in the ocean.

Jaws was fished out and released right back into our swimming area...the ONLY reason I need to stay out of the water!

The view from our balcony as we returned home for dinner. Mimi and Papa had everything ready, all we had to do was eat. A full day, memories in the making. We love this place!

Postcard Series - 2009

Here we are again, Hilton Head Island 2009! Many changes have rolled into our lives, but this place seems to be a constant.

Maeve, Myles and I flew down early this morning. David and Eamon are home, we just couldn't arrange the myriad of details to make it possible for the prince to travel this far. David is working shortened hours and nurses are in place led by Super Nurse Maria! Although I have peace leaving Eamon in Maria and David's care, it is still bittersweet.

The prince had a quick and fairly local mini-vacation to Connecticut. We had a great time, enjoying our family alone - no nursing for 4 days! This week is different, but all three of our children will get what they need. The prince, some special bonding with dad; M&M, focused mom-time with the bonus of cousins, aunts, uncles, and grandparents!

What a beautiful, sunny beach day! We swam, combed the beach, drank fun concoctions, laughed and played! Pictures of the prince smiling sent to my phone were the cherry on top.

Myles, as silly as ever, having fun with a "bum" leg.

The brothers, silly as ever themselves.

Look Dad, Muscles!

Digging a home for the sea creatures collected.

A sea star!

Lessons I'm Learning Along the Road - Part 3

From deep soul checks to paradigm shifts, I find mothering Maeve, Myles and Eamon to offer ample opportunities for my own growth.

Humility

The nurses who care for Eamon act kindly, seem to genuinely care for the prince, and certainly perform many tasks throughout the day and night. But, I was stopped in my tracks by the beautiful expression of service Nurse Maria bestowed on my son. After a full day of effort from himself, Maria prepared a bucket of warm water, gathered a towel, wash cloth, soap, and cream. Settling in next to Eamon, she began to wash his feet.

I am not sure I could find a more succinct demonstration of humility. Jesus washed the disciples feet - the master bowing before the servants. Divine concepts run contrary to our human ideas. It's better to rule over, get ahead, demand respect...right? Not in God's kingdom. I felt humbled to see Eamon, our prince, exalted in a tangible and utterly loving manner. And, I felt the sting of all those times I have chosen to exalt myself over the needs of others.

Maria's example challenged me to look for occasions to wash feet. And, if you only knew how detestable feet are to me...I have often said I love David down to his ankles. The chance to extend "Jesus" to someone other than myself, remembering fulfillment comes from doing His will.

And He washed feet!

True...Eamon's feet are precious - I do like under-10 year old-feet, but that's another story.

Jumping Back In!

Because I don't know where to begin. My hiatus is hopefully over, but for tonight just a quick Prince update.

A little more than a year ago, I had met with Eamon's "then" neurologist. She was thorough, really thorough, and tossed on the table the idea of a tracheotomy. The thought brought Mimi to tears, David to outrage at the absurdity of its necessity, and me to a "just-kicked-in-the-stomach" feeling.

I followed-up with the pulmonologist, who settled me with a "We are not there yet, May never be there" response. And so, the idea was put away.

This February, Eamon reached his most heightened respiratory crisis - failure to be exact. The idea of a trach was not only on the table, it was the center piece. The ICU Dr mentioned it after Eamon was intubated, but reserved its full discussion for the next day. Well, the next day came early...he walked in the room about 6am. Eamon's labs were back showing chronic CO2 retention that had reached a fatal level. My breathe catches remembering just how sick our sweet prince was.

Ironically the week before the hospitalization, I had gravely discussed the potential need for the trach with Eamon's physical therapist.

And now, we were face-to-face with the decision. Obviously, we chose the trach - a decision that was clear and peace-filled. God had been preparing us.

It has been a long couple of months, lots of ups and downs readjusting to our newest normal , but the trach has brought new life to the prince. He is doing amazingly well! Stronger, more consistently connecting with us, and joy - such joy. There are days, I believe he is trying to get on up and march around the house. He is growing, longer and not leaner, looking more proportioned. His hands are open and reaching, his vision seems more attune, and did I mention the joy. He laughs, belly laughs, smiling most of the day away.

We are so grateful for what the trach has brought to Eamon, the chance to be his best self.

Celebrating at the 4th of July Parade

The state of nursing remains unchanged, but new insurance covering both nursing and equipment is in the works.

Until then, this is the new look of nursing in the Barclay home.

Nurse Maeve, gloved and workin' the stethoscope. Eamon looks concerned.

The Waiting Room

Wow, it has been a long time...I almost forgot I had a blog! Life has been full, to say the least,and I have chosen to keep my words few because truthfully I needed to work through some raw emotions. But I am feeling the wind blowing my wings back open, readying me for some soaring.

Eamon is doing well, in general. We have experienced some increased apnea episodes necessitating the tweaking of ventilator settings and respiratory treatments. He still maintains his breathing (day and night) on room air - an absolute miracle. Eamon is gaining, at his own precious pace, strength in his arms and legs. He is learning to swallow and managing his "oral secretions", a.k.a. drool, much better. We are seeing so much purposeful movement - activating specially adapted toys, scooting around the house, and responding with delight to the people around him. Eamon continues to rest in a peace that seems "other-worldly".

Nursing care coverage has recently changed. Eamon still medically requires 16 hours per day, but we have been reduced to a daily 8 hour shift. This situation poses a great challenge. We are scheduled for minimal night coverage, leaving me as the "nurse-in-charge". I am feeling the effects of sleep deprivation, but believing that increase is coming - soon! Several promising scenarios have surfaced, please pray.

My friend, Super-Nurse-Maria, and I were chatting several weeks ago. She was sharing about a cancer diagnosis her husband was given 6 years ago (he is well today!). She recalled the alarming phone call announcing that life as they knew it was about to change, clearly remembering a sense of calm mixed with excitement that arose in her spirit. She explained that we all are in a "waiting room" of sorts. Life progressing, aware of God - possibly, but not yet face-to-face with Him. Until...whatever circumstance calls you in, no longer waiting for an encounter, but fully present with the One who ultimately orchestrates it all. An intimacy born of trial, depth of knowledge the reward.

The apostle Paul pleaded three times with the Lord to remove the "thorn" in his flesh. Instead of removing the difficulty, God promised a grace that is sufficient and power made perfect in weakness. I have asked God to remove our "thorns", but they persist for reasons I trust to God. Paul even goes on to "...boast all the more gladly about my weaknesses, so that Christ's power may rest on me." and to "delight in hardships and difficulties, for when I am weak, then I am strong."

Feeling weak, but knowing that is the beginning of strength. My soul boasting in the Lord!

Sinking

"If Grace is an ocean, then we're all Sinking." - K.Walker

It is unfathomable, we are incapable, of grasping how God works together all things. Our stories are complicated, yet if you follow closely, they are intricately woven together in the most coherent manner. Today particularly, I am feeling the "lightness" that follows a time of darkness. Joy is a constant, happiness is circumstantial, today my soul is embracing both!

The idea of Private Duty Nursing was a bitter pill to swallow for many reasons. That was before. Our nursing experience has been indescribable. Their compassion, skill, ability to be unobtrusive, has been a tremendous blessing to our family.

One angel, super-nurse-Maria, has been dropped into our lives for such a time as this, for sure. We work in tandem, so effortlessly, as if we've always been together. She is a beautiful example to me and my babies of working, in any capacity, with wholehearted devotion. No matter the task, Maria sets about as if it was her greatest honor. She has taken to doing laundry during the Friday over-night shift. This started as Eamon's loads, increased to include M&Ms', tacking on towel and sheets, culminating in today's blitz - it is all done! Folded to retail-store-standards, and poured over with tremendous humility. Maria believes this is her privilege. To Maria, folding laundry carries equal importance to changing a trach, listening to my baby's heartbeat, or administering meds. See, utter devotion, a tangible portrait of what it means to serve one another.

Imagine my absolute delight last Saturday morning after my house "fairy" worked feverishly through the night while I slept peacefully. I mean really!

Today's sweet surprise!

Oh, and SNM (Super-Nurse-Maria) makes rainbow jello treats for Maeve and her party-goers.

I am overwhelmed that God would allow my family to Sink in this kind of Grace! It is further evidence that to put my whole trust in an unseen, incomprehensible, all-consuming God is the most logical thing I do! I am free-falling, completely leaning into Him, blindly being led, and sure enough, He has "turned the darkness before me into light, and the rough places into level ground." (Is 42:16) These are the things that He does!

Himself, kicking. Yes, using muscles that were flaccid, recognizing cause and effect, and sinking in Grace!

And a Little Child Will Lead Them...

Last Thursday Eamon had a follow-up appointment with his pulmonologist. This necessitated our leaving the house, no small feat lately. One nurse, one mom, one prince, a rolling piece of luggage - aka, new diaper bag, suction machine, pulse oximeter, oxygen (just in case), kid cart seat and stroller base - whew! We were quite a scene in front of the building now trying to upload our gear. I was struggling with
the seat/stroller when an observer offered his assistance. I accepted, rather unlike me. Success was found, and off we went to the elevator. Again, the good samaritans stepped aside, holding the door and allowing us to use the elevator first. That's when it hit me, Eamon brings out the best in people.

After "Ears for Eamon", a group from WaltsBasement.com started to send gifts so Eamon could enjoy Disney at home. Packages from around the U.S. and Canada keep appearing filled with pixie dust and goodies from total strangers. People touched by Eamon, and inspired to do good for another.

Another pair of Ears - personalized to boot!

Mickey, in various shapes and sizes, trached-out for my boy.

Today's box - overflowing with love.

My incredibly talented friend and founder of "Ears", Miss Jodi, created this amazing compilation of pictures, quotes, and comments left on Facebook. Words meant to encourage, heartfelt prayers lifted on our behalf, and strength evident in numbers joined with one purpose - to believe for Eamon.

A sweet friend of my sister, Jenny, is getting married this coming Saturday. She and her future husband, Ryan, have decided in lieu of favors to make a donation in Eamon's name to Mary's Fund. A fund which supports many local special needs children, Eamon being a grateful recipient.

While shopping in Vera Bradley for some Easter gifts, I spotted a rolling piece of luggage. I thought it might work for Eamon's supplies while still being a bit stylish. The price tag was too steep, so I reported the bag was not even for travel but for my son's medical supplies. With just a bit of Q and A, the saleswoman suggested I call her privately so I could utilize her generous discount (50%). Instant friendship rooted in wanting the best for the prince.

Another friend and her husband pray for Eamon daily. He was already interested in medical "stuff", but after exploring trachs and their care has decided to make a career change, going back to school for respiratory therapy.

Little-ones and older-ones lowering their heads to intercede. Food prepared, coffee sent, help in various forms offered, perspectives altered, and choices impacted because Eamon lets "his light shine before men, that they may see ... and praise God".

There is no greater reward than knowing Eamon's life has influence and impacts, for good, the world around him.