Diary of Sydni Taylor
Timeline: JAN/05 - FEB/05 - MAR/05 - 4/1/05 - 4/2/05 - 4/3/05 - 4/4/05 - 4/5/05 - 4/6/05 - 4/7/05 - 4/8/05 - 4/9/05 - 4/10-11/05 - 4/12/05 - 4/13/05 - 4/14/05 - 4/15/05 - 4/16/05 - 4/17/05 - 4/18/05 - 4/19/05 - 4/20/05 - 4/21/05 - 4/22/05 - 4/23/05 - 4/24/05 - 4/25/05 - 4/26/05 - 4/27/05 - 4/28-29/05 - 4/30/05 - MAY/05 - JUN/05 - JUL/05 - AUG/05
April 1Dear Sydni,
As I wakened this morning my first order of business was to thank God for the Blessings which He has bestowed upon our family. How could I reason otherwise? To wit: as I gazed upon you resting free from anxiety within your crib, an upwelling of the purest love overtook me. At that moment I was reminded – through your suffering I have been rewarded with great appreciation and awareness. I see not my suffering child but rather God’s miracle in the making. “Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved” (Helen Keller).
The better part of today was SOP (“Standard Operating Procedure”), i.e., organized madness. The only medical issue worth noting was the readjustment of your feeding tube. Other than that, your mother and I are still trying to work through a structured system (at home) moving forward. Sometimes we cannot see eye-to-eye. We just disagree. It will play out though – it’s all good.
In the meantime, we shared a wonderful evening alone together as Mommy caught up on some much needed rest. You slept effortlessly in my arms until near midnight; then when you would stir, I cradled you even closer and sang “When You Wish Upon A Star” as I prayed for your dreams to come true. Reach for the stars my angel. “Dream the dreams that have never been dreamt” (David Bower).
On Angel’s Wings my child – On Angel’s Wings!
I love you!
Dad
April 2Dear Sydni,
Your mother and I were emotionally beset today as we set eyes on how your struggle for survival has touched so many lives. A fundraiser was organized to assist our family during these troubled times; but the greater message was clear: this family is truly blessed. The outpouring of love and encouragement from our family, friends & “new” friends could only be defined as overwhelming. At the end of the evening, it was too much for me to bear as I broke down in a flow of uncontrollable tears. Accepting help was and remains a humbling experience – but I am sincerely thankful. “We not only need to be willing to give, but also to be open to receiving from others” (On Hope).
It was divination that God chose to open the skies on this day; for as friends and strangers alike were wrapping their arms around our family in a collective show of support, the torrential downpour sent from above signified that, though your suffering is part of His greater plan, God weeps for His messenger child. The calm within today’s storm reminded me that the hand of God is at work through your sacrifice. What’s meant to be will find a way. “Life is God's novel. Let him write it” (Isaac Bashevis Singer).
Today friendship doubled our joy and divided our grief (Swedish Proverb). By all definitions it lifted our spirit and spoke to our soul. Amidst nature’s fury, our friends painted a picture of hope – a true masterpiece. And we are evermore grateful. "A friend may well be reckoned the masterpiece of nature" (Ralph Waldo Emerson).
On Angel’s Wings Sydni – On Angel’s Wings!
I love you!
Dad
April 3Dear Sydni,
The little things in life are far too often taken for granted. Ironically enough, it is those modest sources of pleasure which can yield the richest rewards: happiness and love. As such, today was a great day. I held you while sitting on my own couch; you sat in your bouncy seat for the first time whilst Tari tucked you in; Mommy took a nap in her own bed; you turned your head from right-to-left with relative ease, exhibiting excellent range of motion; you even cooed. Boring? Absolutely not – we felt like a normal family. “That man is happiest who lives from day to day and asks no more, garnering the simple goodness of a life” (Euripides).
Tomorrow your chemotherapy treatments will begin anew. Whereas you are a week delayed (for this cycle) due to last Monday’s brain surgery, unfortunately your treatments may be extra aggressive. As fate would have it, just when we are seeing signs of your personality it is time to make you very, very sick again. This is the part where I am supposed to say my faith is strong; but as a parent, it pierces my heart knowing full well that you shall experience excruciating pain all over again. Even so, my faith is resolute. “The will of God will not take you where the grace of God cannot keep you” (Anon). Where God guides, He provides. My faith is steadfast as today I pray for your strength. “As your faith is strengthened you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit” (Emmanuel Teney). Rest well my angel – today I believe!
On Angel’s Wings Sydni – On Angel’s Wings!
I love you!
Dad
April 4Dear Sydni,
Here’s the deal sweetheart – I refuse to be downbeat. Your mother and I relished in our wonderful weekend with you; yet within hours of your re-admittance at NEMC today, Mommy called me with all sorts of unenthusiastic updates. Clearly you blossom within the warm surroundings of home. Chaos, quiet, commotion, silence, bedlam, calm, barking, whispering: it matters not as long as you are at rest in South Boston. I am reminded that living one day at a time is a key to happiness. “Live your life each day as you would climb a mountain. An occasional glance toward the summit keeps the goal in mind, but many beautiful scenes are to be observed from each new vantage point. Climb slowly, steadily, enjoying each passing moment; and the view from the summit will serve as a fitting climax for the journey” (Harold B. Melchart).
As I pondered this gift of vision that your suffering has bestowed upon me, I glanced to the Heavens and instantly identified with the poetry in the sky. "If the sight of the blue skies fills you with joy, if a blade of grass springing up in the fields has power to move you, if the simple things in nature have a message you understand, Rejoice, for your soul is alive” (Eleanora Duse). Today, I am the luckiest man alive. And I have an angel to thank.
On Angel’s Wings my dear Sydni – On Angel’s Wings!
I love you!
Dad
April 5Dear Sydni,
Know I am smiling right now for today you told me all will be OK. As I sang “In My Daughter’s Eyes” (during administration of your chemo) all it took from you was a glance of reassurance; nothing more. Of each and every time in your presence – my spirits are lifted ever so high. Imagine – a suffering 4 ½ month old child is heartening her Daddy day in and day out. Then again that is the wonder of this miraculous journey. I am comforted because long ago uncertainty was replaced by certainty. Now, my vision is not blurred; I acknowledge unknown stumbling blocks lay in wait. But my true ability to see lies deep within the chambers of my heart. And I am at peace by placing my faith in God’s hands. "I have held many things in my hands, and I have lost them all; but whatever I have placed in God's hands, that I still possess" (Martin Luther).
Today’s focus was to create a family environment in the hospital. Tari and your mother worked as a team in assembling a jigsaw puzzle; I held your hand as you slept through treatments. Then later, while Mommy and your sister dined together across the street, I stayed behind and wrapped you in my arms simply to say “Daddy’s here – I love you”. I made a promise that I would cherish every moment spent with you and Tari for I can never know when it will be my last. “Perhaps parents would enjoy their children more if they stopped to realize that the film of childhood can never be run through for a second showing” (Evelyn Nown). Be strong and come home soon my angel.
On Angel’s Wings Sydni – On Angel’s Wings!
I love you!
Dad
April 6Dear Sydni,
Oh did I ever see your grit and mettle today! The atmosphere in your room was entirely laid-back ‘at first’; you were content and at ease within your crib as a host of medicines were being administered during your chemo treatments. Then one disturbance after another would ensue: first it was the nutritionists; next neurology; followed by physical therapy; then your nutritionists yet again; sandwiched in between were nurses and oncology. Surely the entire City of Boston must have heard your scream….. “enough already”! All I could do was fashion a smile and utter “that’s my girl – tell them who the real boss is!”
Sydni, I was so pleased during my stay today. All intermittent pain from the chemotherapy was expected. However, I was thrilled to observe you lying abed with zero arch. It was the first indication (for me at least) that your most recent brain surgery has indeed relieved the pressure on your brain. You were alert; moving your eyes and following objects; your arms and legs were shifting about; and warmest of all – I heard you cooing nonstop. I am crying as I type for I am so filled with joy. God gave me such hope today. “And thou shalt be secure because there is hope” (Jb. 11:18).
Tomorrow is a big day: your shunt was installed at Boston Children’s Hospital; NEMC makes use of a totally different type of shunt. As such, because of you the manufacturer (of your shunt) is coming to NEMC in order to train the staff in its proper usage. This way – when you receive an MRI on Friday – there shouldn’t be any uncertainty.
My angel, you continue to inspire my passion and enliven my soul. “Only passions, great passions, can elevate the soul to great things” (Denis Diderot).So unto the world,
Let them praise and aloud sing,
Blessed be God’s child,
Who arrived On An Angel’s Wing!On Angel’s Wings my dearest – On Angel’s Wings!
I love you!
Dad
April 7Dear Sydni,
Daddy labored through an emotionally draining and worrying day; nothing relating to you sweetheart – my dejection centered on a collection of external factors. The initial angst was triggered by a call received from a best friend who is battling chemotherapy linked with leukemia. His prognosis is good; but my disquiet arose when he told of the excruciating pain resultant from his one drug. If he suffers from such unbearable pain, then what is my baby being subjected to with the aggressive administration of five toxic medications? It took my breath away – I was literally numb.
Next an outside issue cropped up relating to funds. Normally nothing whatsoever to be bothered by; but having to deal with the matter on this of all days created stress in an already overwrought environment. The timing was unfortunate. Finally factor in my not seeing you today, added to your mother and I remaining at odds over certain issues, and it all equated to an unhappy day.
“God, grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.” (Reinhold Niebuhr)Then I remembered my Longfellow: “Into each life some rain must fall, some days must be dark and dreary” (Henry Wadsworth Longfellow). I chose right then-and-there to change my glum deportment. I picked up your sister from school; we drove directly to Target where she picked out a few jigsaw puzzles (her new favorite pleasure); she and I laughed and played together all night; for a spell (whereas the weather was so delightful) Tari and I sat outside on the front steps and tried to identify all of the sounds of nature; I benefited from some quiet reflection on the roof deck; and eventually it was time for bed. I thank you God for this most amazing day.
On Angel’s Wings Sydni – On Angel’s Wings!
I love you!
Dad
April 8Dear Sydni,
Negative news was met with unflustered repose this afternoon; an MRI revealed the shadow seen (on your CT) a few weeks back is in fact residual tumor. Chemo most likely will not shrink the growth so the issue becomes – can we wait or must you undergo brain surgery for a fourth time? Your mother and I will speak with Dr. Madsen on Monday. Until then we shall delight in the bouquet known as today. “All of us tend to put off living. We are all dreaming of some magical rose garden over the horizon instead of enjoying the roses that are blooming outside our windows today” (Dale Carnegie).
Believe it or not (notwithstanding the aforementioned) it really was a wonderful day - for you came home. This latest round of chemotherapy concluded last evening; as such, Tari and I picked you up shortly before dusk (your sister was very excited – as evidenced by her refusal to leave the house until I located her “I’m The Big Sister” sweatshirt). However, the drive home was not so pleasant; you more than likely were feeling the ill side effects of your chemo treatments (i.e., excessive vomiting). I pulled the car over so Mommy could better tend to your discomfort; though Tari held her suggestion as more useful: a medley of Winnie-the-Pooh-Clifford-Itsy-Bitsy-Spider-Scooby-Doo songs. “Sweet is the voice of a sister in the season of sorrow” (Benjamin Disraeli).
Once back home and settled, I chose to end the evening with a walk along the beach. A warm setting sun splashed the canvas as the daylight hours turned dark. It was a good day.
On Angel’s Wings my little angel – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Today actually kicked off (for me) at 2:30 AM. You were coping with a great deal of discomfort and your mother desperately needed some sleep. Therefore, I took over parental duties until 6:00 AM. I held you in my arms for the duration; unfortunately, whereas my entire center of attention zeroed in on your getting sleep, as a consequence I got none myself.
But the time was well spent and I’ll tell you why. While caressing your chubby cheeks in the early morning hours, God and I had a little chitchat as I sought guidance. I was not questioning His way; no, my plea sought continued strength to keep this family together. As solid as our faith may seem – and it is unwavering – the stress on your mother and I nonetheless is beyond description. I simply noted that I could do with His lending a hand from time-to-time. And guess what – He showed me a sign.
My mind was drained and body exhausted; yet even still, when Mommy took over at 6:00 AM, for some reason I chose not bed but in its place a stroll to Castle Island in order to catch glimpse of the sunrise. Honestly, the lone thought on my mind was to take in the fresh air. Except when I turned to leave, my eyes instantly set upon the footprints in the sand. I then scanned the beach in its entirety and no other prints could be found – the whole seashore was untouched. Seeing the sunrise glisten off the footprints in the sands, God’s message was loud and clear: He carries me in my times of despair.
After that for the remainder of the day I had clarity of thought and peace of mind; you were more relaxed and cozy; Mommy appeared focused and stress-free; Tari engrossed herself in puzzles and stickers; and Barney & CJ slept and slept. The cherry that topped this day was when Nana & Papa joined us for the evening meal – our first dinner guests since that fateful January day. On this day our family touched normalcy – and for that I am thankful. “One of life’s gifts is that each of us, no matter how tired and downtrodden, finds reason for thankfulness” (J. Robert Maskin).
On Angel’s Wings my dearest – On Angel’s Wings!
I love you!
Dad
April 10 & 11Dear Sydni,
I have come to the conclusion that wearing a watch is entirely pointless nowadays; as is too often the case, two days intermixed as one when Sunday somehow coalesced with Monday. At this point I am as likely to be awake at 4:00 AM as I would at 4:00 PM. But it’s all good. “An earnest purpose finds time, or makes it. It seizes on spare moments, and turns fragments to golden account” (William Ellery Channing).
Sunday morning started with my final long training run before the April 18th Boston Marathon. A zephyr wind provided the perfect backdrop for this 10 mile jog. Though if this exercise was any indication, then next Monday’s marathon is sure to be exceptionally emotional; as today I clearly envisioned your angel’s wings carrying me every step of the way.
You had such a restful day. In fact, it gave your mother and me a rare opportunity to be unconfined. Nurse Christine stayed at home while you slept; (After dropping Tari off at Nana & Papa’s) I ventured over to Northeastern University to watch my baseball buddies play Hartford University; Mommy went for an afternoon jog with a friend. Without a doubt we enjoyed the value of this unbound day to its fullest. “No matter what looms ahead, if you can eat today, enjoy the sunlight today, mix good cheer with friends today, enjoy it and bless God for it” (Henry Ward Beecher).
Your calmness turned to agitation in the early morning hours of Monday; as such, Mommy and I changed guard at around 3:00 AM. I had difficulty soothing your distress until something like 4:30 AM. However, I still preferred not sleep as you lay so angelic-like on my lap; therefore I continued to coddle and caress your body until about 7:00 AM. It was a sleepless night enfolded in love; I protest not.
Everything else about today was positive. Mommy brought you to NEMC for the administration of one of your chemo medications; but she tells me your entire day was quite smooth nonetheless. I took advantage of your relative composure by attending the Boston Red Sox home opener (against our rival New York Yankees) at Fenway Park. Dare I dream of continued normalcy once imagined?
Rest well tonight my angel. “Let God love you through others and let God love others through you” (D.M. Street).
On Angel’s Wings my child – On Angel’s Wings!
I love you!
Dad
April 12Dear Sydni,
As I labor to note down my thoughts of this day, it ultimately dawned on me: I have not a thing to say. Your mood was calm and demeanor comparatively unperturbed. In all honesty, in the midst of such equanimity for a few hours there I was able to stop thinking about my reality – the value of which did not go unnoticed: “If we only knew the real value of a day” (Joseph Farrell). Beyond question – I do.
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
April 13Dear Sydni,
Last night your irritability re-emerged; as such, your mother took care of your every need from 1:00 AM until daybreak. Of course sleep was not a follow-on option because she then brought you to NEMC (at 8:30 AM) for clinic. I doubt that Mommy’s exhaustive commitment can ever truly be defined. She has been a warrior by your side; a warm voice; a tender touch; an advocate; a loving clutch; a best friend; a nurse’s aide; God’s other gift; faith unafraid. Indeed, is there anything more devoted than a mother’s love? “Mother love is the fuel that enables a normal human being to do the impossible” (Marion C. Garretty).
In the afternoon I spoke with Dr. Madsen regarding the remaining tumor. More surgery is most likely unavoidable; the residual growth must be taken out at some point. It appears to be situated well enough for him to get at – which is good news. Nevertheless, he and Dr. Kretschmar have yet to determine a timeline for action. Thus we wait.
My day ended faster than it began, which I could not allow. There is always time for time. “And if not now, when” (Talmund)? Accordingly, I chose a walk along the beach which (as hoped) presented idyllic surroundings for reflection."Reflect upon your present blessings — of which every man has many — not on your past misfortunes, of which all men have some" (Charles Dickens). It was a good day!
On Angels’ Wings my child – On Angels’ Wings!
I love you!
Dad
April 14Dear Sydni,
Today rang a familiar tone in that my day was in progress by 2:00 AM. Of late your difficulties appear more pronounced at night. Of course, I lulled you to sleep here-and-there; but for the most part it was an unbroken routine until 7:00 AM: fifteen minutes of slumber followed by thirty minutes of tetchiness. I won’t lie – this night by night lack of sleep is literally sapping every ounce of my strength. But I’d give a lifetime of sleepless nights to comfort your distress; I’d take on eternal suffering to spare your pain. Hear my prayer oh Lord, you have been my strength in times of trouble. My tears ask that you ease my baby’s heartache; I give myself to thee. "To ease another's heartache is to forget one's own" (Abraham Lincoln).
With Nurse Christine watching you this afternoon, your mother joined me in a final pre-marathon workout – a relaxed four mile jog. It was such a beautiful day to be outside; and it was the first occasion during which Mommy and I were afforded alone time since the beginning of January. Life sure can change in an instant; all the same through the suffering of an angel my inner spirit has been freed. “Just as a candle cannot burn without fire, men cannot live without a spiritual life” (Buddha).
This evening you and Mommy were invited to a prayer group attended by Fr. McDonough, Fr. Augustine (a Mexican priest who some say is anointed in the Holy Spirit) and Ivan (a noted Medjugorje visionary). Many tears were shed during this extraordinarily emotional occasion. At one point towards the end of the evening, with Fr. McDonough and Fr. Augustine praying together over you and your mother, witnesses saw "rays of red light streaming from the top of Cathy's head that were descending to the floor”.
“May the God of hope fill you with great joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit” (Romans 15:13).
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Two words can best describe today: “Groundhog Day”. I was up at 1:00 AM and, from that point forward, my head never again hit the pillow. No need to dwell on the particulars – it’s the same picture within the framework of another day. But it’s all good. I recognize that this is a journey with a purpose. No doubt I will retrace these very same steps once more, and then another time, and yes, all over again at some point in the future. But I am prepared to go the distance faithfully. When I am weak, I will pray for strength; in times of strength, I shall give thanks. You have taught me to never underestimate the human spirit. “Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict” (William E. Channing).
Thus in my exhaustion I chose to enliven my soul by appreciating this very day. “Yesterday is ashes; tomorrow wood. Only today does the fire burn brightly” (Old Eskimo proverb). An awe-inspiring sunrise and sunset was just the thing to comfort my faith in God. And Tari’s purity of heart reassured hope.
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Today our character was tested as a slight curveball was thrown our way: a continuation of blood in your stool(s). After consultation with oncology, it was determined you may require a platelet transfusion. As such Mommy bundled you up, placed rosary beads in your hands and you were off. And sure enough, you were admitted to NEMC shortly thereafter. But there was no panic – your mother and I grasp the routine all too well: “You may have to fight a battle more than once to win it” (Margaret Thatcher).
This evening Mommy and I made a date irrespective of our unpredictable world of realism: a few hours at the movies to catch the 5:30 PM showing of “Fever Pitch”. It was so pleasurable to laugh and come into contact with normality. Nevertheless once over, our lives slipped back to reality. After kissing your mother goodnight, she returned to the hospital and I ventured home to take care of Tari. Back to following God’s lead. “Wherever the fates lead us let us follow” (Virgil).
On Angels’ Wings my angel – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
You have been on my mind the entire day; and I mean nearly every second. I am anxious about tomorrow’s Boston Marathon as I have no idea what the day will bring. Was my minimal training enough? How will the projected high temperatures affect my energy and concentration? Can I endure on emotion alone? The questions are many but they matter not at the end of the day. Your strength has inspired me for a lifetime - may your angels’ wings carry me through.
"Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" (Isaiah 40:31).
On Angels’ Wings my beautiful child – On Angels’ Wings!
I love you!
Dad
April 18Dear Sydni,
How can I describe that which is indescribable? Today is Marathon Monday: Hopkinton; Ashland; Framingham; Natick; Wellesley; Newton; Brookline; Kenmore Square; Boylston Street; 26.2 Miles; 70+ degree temperature forecast; Heartbreak Hill; Tradition; Today your spirit would soar like eagles. I utter once more: "Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" (Isaiah 40:31).
Daybreak: an eerie calm encircled our home. I arose at first light to prepare for today’s running in the 109th Boston Marathon. Stress was nonexistent; though butterflies were abundant. In truth, the very second I held you in my arms was the instant at which from top to bottom my nervousness faded away.
Morning: the Runner’s Village in Hopkinton was bustling with excitement. A cool breeze encased the rising mercury as my psychological zone came into focus. People spoke to me though I heard not one word. On this day I was alone with God and my angel – it was all about you. My heart felt enriched beyond dreams; and nothing is impossible when you believe. “What we wish, that we readily believe” (Demosthenes).
The 109th Boston Marathon: words cannot articulate the emotion of such an experience. I was moved to tears as I witnessed an immeasurable number of friends – old & new – lining the 26.2 course throughout the day. My first ten miles were near effortless as I hardly broke a sweat. Then at Mile 10 (in Natick) I was caught way off guard as Mommy, Barney & CJ (along with our dear friends Patrick & Danika) awaited my passing. It was a wonderful surprise!
Upon approaching the Half Marathon mark, I became somewhat concerned; not due to pain, but rather lack thereof. I felt great – better than any previous training run – and was running at a brisk pace. For sure I would hit the proverbial wall before Heartbreak Hill – and this worried me. Then, at that very moment of unease, a song on my MP3 player spoke to me: “Hear My Prayer”. I had forgotten that I downloaded it about ten times to give me strength along the second half of the course - and did it ever. An overwhelming intensity and confidence overflowed within as I continued on. Honestly, the only difficulty to this point: whereas it was so hot, the salt from my excessive sweating was relentlessly burning my eyes; otherwise I was running strong on your angel’s wings!
There is no sugarcoating Heartbreak Hill. It is the Boston Marathon’s Mt. Everest. But at Mile 20, it was all good. I was met again by your mother, Barney & CJ; at that point I called an audible. Mommy had acknowledged how much it would mean to her if we crossed the finish line together; accordingly, I made a decision to walk the final six miles side-by-side with her so we could finish as one. My official finishing time was 5:17:26; but no one will ever tell me I did not win. Today was your day Sydni – one that I will cherish in memory for an eternity. “Memory is the diary that we all carry about with us" (Oscar Wilde).
On Angels’ Wings my beautiful daughter – On Angels’ Wings!
I so, SO love you!
Dad
April 19Dear Sydni,
Today’s genre can best be defined in one word: reflection. After being gone for the better part of the day while attending the funeral of a dear family friend, I spent the late afternoon and evening hours holding you close in my arms. Despite now having lost most of your hair from the chemotherapy, you looked radiant as you slept ever so soundly. Our quality time was emotionally gripping as it called to mind the intensity of yesterday’s marathon – a challenge that presented an irreplaceable opportunity to openly examine my life. “The unexamined life is not worth living” (Socrates).
Inside the depths of this reflection, as I gazed upon my running jersey, contained within each tinge of sweat I immediately identified pure love, inner strength & unyielding faith. As a father I hope; as a child of God I believe; as a determined soul I understand:"Grief drives men to serious reflection, sharpens the understanding and softens the heart” (John Adams). Today I believe!
On Angels’ Wings my child – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
My exuberance of the past few days was grounded as you spiked a dangerously high fever this morning. As such - amidst complete order and relaxed composure - you were rushed back to NEMC and subsequently re-admitted. “Always take an emergency leisurely” (Chinese proverb).
Unfortunately this threw today’s plans into utter disarray. Having been lulled into a false sense of security (because of your back-to-back-to-back good days), I scheduled a full day of business calls. But in this my current reality drama is not an option when faced with obstacles; thus I canceled everything on my plate and went with the flow. Then later, I nourished my weaknesses and limitations with a deep breath before taking in the wonders of a sunset. “When I admire the wonders of a sunset or the beauty of the moon, my soul expands in the worship of the creator” (Mohandas Gandhi). It’s all good sweetheart – rest well tonight as God is with you.
On Angels’ Wings my angel – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Today my afternoon and early evening was spent by your side at the hospital. For the better part of our time shared, I held you in my arms while you slept; however, on one occasion I laid you in the crib to afford you the opportunity to stretch your arms and legs. And though I turned for just a moment, all it took was that split second to be reminded how great a gift life truly is. My enlightenment came while setting eyes on a simple act – and from the depths of such innocence shined illumination: you had raised your right arm and were staring quizzically at your fingers as you wiggled them about.
A small milestone? Maybe. But at that very moment I saw not a child battling cancer; all concerns surrounding cortical blindness, partial paralysis and brain damage fell fleetingly silent. No - in place of reality lay a learning child. The purity of one basic act captured the spirit & soul of the gift of life. Indeed, this passing glimmer of hope aroused an emotive passion from deep within. “Hope arouses, as nothing else can arouse, a passion for the possible” (William Sloan Coffin, Jr.). Sydni, it is possible as today I believe!
On Angels’ Wings my child – On Angels’ Wings!
I love you!
Dad
April 22Dear Sydni,
There are days when the excessive pressure placed upon your mother and me is so severe that it simply explodes; it can crop up totally out of the blue and unfortunately today was one such day. My rendering of the dispute matters not because there are two interpretations to the account. And would it really matter? Certainly neither of us is wrong because we are basing our ways of thinking on heartfelt emotion. No, of greater significance is the harsh reality that our marriage could be in jeopardy if these intermittent outbursts continue. The root of our problem grows not round our love for one another - but rather from the differing ways in which we are both coping with the misfortune that has befallen our family. “Problems are not the problem; coping is the problem" (Virginia Satir).
You were discharged late this afternoon; but with the tension surrounding the atmosphere at home, I chose to take a deep breath by walking Barney & CJ around Castle Island for an extended stretch. As I pondered how to best approach avoiding a shipwreck in our relationship, darkening skies from an approaching storm accompanied my thoughts. “It is better to meet danger than to wait for it. He that is on a lee shore, and foresees a hurricane, stands out to sea and encounters a storm to avoid a shipwreck” (Charles Caleb Colton).
May God’s hand guide our way. “The Bible tells us that a sparrow does not fall without God’s notice. I know he will help us meet our responsibilities through his guidance” (Michael Cardone, Sr.).
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
A subdued tone echoed throughout most of today; Nurse Christine tended to your needs for a full eight hour shift; Mommy and Tari enjoyed a day filled with mother-daughter activities; and solitude was my companion as I retreated deep within my soul. “Nowhere can man find a quieter or more untroubled retreat than in his own soul” (Marcus Aurelius).
Later, as darkness fell, I took Barney and CJ out for a long walk along the shores of Old Harbor Beach. Blustery winds masked the warm night air; but that mattered not as they took it all in. At one point I was given quite a scare when Barney became lost for close to an hour. I eventually called your mother and asked that she pick up CJ so I could cover more ground. Fortunately, while enroute Mommy spotted Barney about a mile away for a happy ending. I so love those guys! “Dogs are not our whole life, but they make our lives whole” (Roger Caras).
On Angels’ Wings my child – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
“God, grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.”
(Reinhold Niebuhr)We were most fortunate to have Nurse Christine for eight hours today (lucky because it was a Sunday); as such, I took advantage of the comparative freedom by running a few errands before spending the remainder of the late afternoon at the playground with Tari. Your sister’s ingenuous enthusiasm was uplifting as we laughed and played throughout our stay. "If you can give your son or daughter only one gift, let it be enthusiasm" (Bruce Barton).
Upon returning home, I tended to your needs while Mommy caught up on some sleep. You cried for almost six straight hours – not a great night for you; eventually settled, I caught a few 'z' s myself before the break of dawn. No complaints my daughter – sleep well. May God shine through as your dreams come true.
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Per a scheduled visit to NEMC this morning, tests confirmed your counts to be strong; as such, you were re-admitted to begin yet another round of chemotherapy. Your mood fluctuated from time to time throughout the day; otherwise it was hurry-up-and-wait until the paperwork was processed and a room readied for your arrival.
At the home base, Tari was unusually needy and emotional; thus every second of my evening was spent playing whatever games your sister so desired until she could play no more. “Nothing you do for children is ever wasted. They seem not to notice us, hovering, averting our eyes, and they seldom offer thanks, but what we do for them is never wasted” (Garrison Keillor).
Tonight Tari and I once again prayed to the Blessed Mother, Saint Anthony and Jesus – may you be the miracle child that our faith so truly believes you to be.
On Angels’ Wings my daughter – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Your mother and I had a lengthy chat today comparing notes so to speak; we are of the same opinion that (since your third brain surgery) you have been much more irritable over the past two weeks. As such we have determined a meeting of the minds is obligatory. Hopefully your shunt simply needs minor readjusting. Whatever the reason, logic dictates that it cannot be established unless action is taken – and right now, not tomorrow or the day after – so we will make it happen. Don’t worry sweetheart; Mommy & I will always be your voice in troubled times. Please be strong and remain unwearied as your mother and I lean on our faith for guidance. We believe that the love in our hearts and intuition in our souls will point the way. “Intuition is a spiritual faculty and does not explain, but simply points the way” (Florence Scovel Shinn).
You and I spent most of the late afternoon and early evening together as Mommy went home to enjoy one-on-one time with Tari. Maybe I am just being a proud father; but tonight I thought “this is the prettiest baby that I have ever seen”. Rest well tonight my angel!
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
I don’t have much to say other than I remain quite worried. Your ongoing irritability continues to trouble Mommy and me. This morning your mother set everything in motion (i.e., CT scan, EKG, consultations, etc.) in our efforts to root out the source of your discomfort. The tests are underway; now we wait.
I stayed with you today into the early evening hours as Mommy took Tari out to dinner and a movie. Whether cradled in my arms or outstretched in bed, you came across as exceedingly frustrated during my visit – almost as if to say “Daddy, how much longer must I deal with this constant pain”. I had a lump in my throat and ache in my heart for the duration. At least we can look forward to this round of chemo ending tomorrow. Anyhow, eventually I was able to settle you down; I must have pressed my cheek to yours a thousand times this evening.
My gut hasn’t felt right lately - and my heart knows why. Be strong Sydni; the burden you bear on our behalf will be rewarded. In this father’s opinion you are the light of the world. “The burden which is well borne becomes light” (Ovid).
On Angels’ Wings my daughter – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
I am all-in sweetheart. Thursday intermixed with Friday as your irritability peaked to alarming concern for your mother and me. The result (for me) has been two hours sleep in the past forty-eight hours. I just about have the energy to type so I’ll summarize the activities of the past two days:
Thursday, 4/28th
• Concern over your ‘full’ fontanel led to presumptions relating to hydrocephalus. Thus your chemotherapy treatments @ NEMC were abruptly halted and you were sped to the Emergency Room at Boston Children’s Hospital;
• Mommy was ill today – battling vertigo; As follows, on but a moment’s notice, my dear cousin Caroline raced to BCH in order to assist your mother with Sydni; I brought Tari to Nana & Papa’s before ultimately arriving at the hospital to take over for Caroline as mommy then came home to rest;
• Fortunately, brain surgery was unnecessary; unfortunately, it was learned that your shunt was incorrectly programmed (it was set at 200 when it should have been calibrated at 30); this infuriated me as it became instantly clear that you have been in discomfort for the past two weeks due to human error; the shunt was of course reprogrammed;
• You were discharged at midnight; sorry to say, though, it took some time for the fluid to flow from your brain and dispense throughout your body; as Dr. Grodman put it – it is not like unplugging the drain in one’s sink where the water empties at once – it takes time for the fluid to draw off;
• The result was continued irritability and heart wrenching crying; I was not able to settle you until 3:00 AM; alas I sat on the couch amidst total darkness – you slumbering on my lap – while I stared into the emptiness until 7:00 AM (I dared not move and risk waking you);
Friday, April 29th
• I picked up your sister at 8:00 AM and drove her directly to school; I then returned home, packed my bag and brought you to NEMC for re-admittance (as you would resume chemo treatments today);
• 9:00 AM soon became 9:00 PM; mixed in between was lots of cuddling, intermittent crying, some painful arching but, most importantly, oodles of love.
Over the course of my fatigue and exhaustion – deep reflection once again reigned supreme. With you cradled in my arms, one simple look (that you gave me on Thursday evening while still at Children’s Hospital) started the rumination. My anger was reaching the mountaintop; it was as if you sensed my doubt. Deep in thought, beginning at that very moment and segueing into Friday, the following came about:Please Believe Daddy
Today as I held my daughter so tight,
A selfish thought arose,
What happened to my happy life,
This isn’t what I chose.
I thought that if I followed the rules,
Lending always a helping hand,
That my just reward would be healthy children,
Not bitter anguish and demand.
But then something special happened,
Just as my heart cast doubt,
This angel opened her tiny little eyes,
And her gaze began to shout.
Please believe Daddy!
That this is meant to be,
I know it’s hard to understand,
But trust and you will see.
Please believe Daddy!
That miracles do come true,
I see in your heart how very sad you are,
Have faith – God is with you.
Well tears filled my eyes as I pondered this sign,
How dare I question God’s way,
And as I kissed this angel’s chubby little cheeks,
Into her ear a whisper I would say.
I do believe my daughter,
You’re an angel sent from above,
God didn’t forsake my definition of life,
He instead blessed it with love.
I do believe my daughter,
That – yes – this was meant to be,
I understand, I shall follow the light,
Through you – God allows me to see.
I understand, I shall follow the light,
Through you – God allows me to see.On Angels’ Wings dear Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
It appears that you are slowly but surely regaining a comfortable tone. Any slow down for a speedy recovery is due to the fact that your brain must now (re)adapt to ‘normal’ pressure (which can be equally as taxing when considering that your head has been under such an unbalanced strain for so long). Thus, despite the recalibration of your shunt two days ago, this residual irritability was not totally unexpected. The more salient question has been: exactly how long would it take for your head to readjust to such ordinary pressure? The bottom line: you are a warrior!
My daughter, I wish I could sit here and proclaim with conviction that your future shall hold no further setbacks; alas I cannot. But know this: “In the darkest hour the soul is replenished and given strength to continue and endure” (Heart Warrior Chosa). Someday, we’ll look back and things won’t seem as difficult as they do now. Indeed!
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad