Diary of Sydni Taylor
Timeline: JAN/05 - FEB/05 - MAR/05 - APR/05 - 5/1/05 - 5/2/05 - 5/3/05 - 5/4/05 - 5/5/05 - 5/6/05 - 5/7-9/05 - 5/10/05 - 5/11/05 - 5/12/05 - 5/13/05 - 5/14/05 - 5/15/05 - 5/16/05 - 5/17-18/05 - 5/19/05 - 5/20/05 - 5/21/05 - 5/22/05 - 5/23/05 - 5/24/05 - 5/25/05 - 5/26-28/05 - 5/29-30/05 - 5/31/05 - JUN/05 - JUL/05 - AUG/05
May 1Dear Sydni,
Today was a good day. It feels so welcoming to jot down that I’ll say it again: today was a good day. I was by your side (at the hospital) for ten long hours – but it was time well spent. Your latest round of chemotherapy ended yesterday; therefore this particular Sunday was all about replenishment (i.e., you received a blood transfusion, magnesium transfusion, meds, etc.). You rested ever so comfortably; signs of arching were almost imaginary; and even your cry exhibited signs of normalcy. I may have been exhausted but it was stress-free fatigue – I’ll take it: today was a good day!
I was also able to bring you home this evening – though the night (of course) sped by incredibly fast: Mommy went for a long walk as I watched you & Tari while, at the same time, administering your meds & feeds. Then when your mother got home, I tried to catch up on lost ground with work. I most definitely burned the midnight oil this evening; but the vision of your angelic face while sound asleep on my lap was enough to give this father the oomph needed to carry on into the early morning hours. So let it be written my child – through your strength I will endure.
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
At about 4:00 AM this morning you somehow managed to yank out your feeding tube. Your mother called the hospital and the doctor subsequently noted there was no need for alarm, especially since you were scheduled to be in the clinic at 9:00 AM. But of more significance was how comfortable and settled down you appeared without the tube. It backed up any theory that at least a portion of your discomfort might be tube related. Unfortunately the benefits far outweigh the negatives (as your need for the feeding tube is unavoidable at this early juncture of chemotherapy). It was simply a promising thought that maybe – just maybe – some of your pain is not neurologically related.
Today was Mommy’s birthday; she seemed in such high spirits to have you home on this special day. At one point this morning Tari jumped in bed to give you a hug and the happiness on your mother’s face was inexpressible. “Children are the anchors that hold a mother to life” (Sophocles).
Overall I would give you a B- today. Random irritability returned after your tube was reinserted at clinic; other than that the day flowed. I watched you at night until 2:00 AM; then your mother took the night shift until daybreak. Rest well sweetheart – may all your dreams come true.
On Angels’ Wings my daughter – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Today we were fortunate to have a nurse for ten hours; for that reason I was able to spend my day at work and early evening playing with Tari and the dogs. The latter would prove to be quite a scene, as a leisurely stroll along the beach soon turned into a free-for-all in the water. It was my fault; I made the mistake of allowing Barney & CJ to play in the sand. Logic says putting Golden Retrievers anywhere near the vicinity of water = swimming. And of course, while I was chasing the dogs, Tari had plans of her own!
Your day was mezza mezza. In the afternoon your mother took you to an appointment with Dr. Madsen, during which your shunt was (re)set to 60; as a result, I have a sneaking suspicion that you may be irritable in the coming days ahead. In the evening, activities at home were pretty much status quo: I watched you until 2:00 AM (you had one high quality throwing up episode at 1:30 AM – otherwise you slept soundly on my lap); Mommy then took over until the morning. All things considered, I’ll take this day’s minor chaos. Until tomorrow……….
On Angels’ Wings my angel – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
The good news: we had Nurse Lin for ten hours again today; the bad news: lack of sleep finally took a wallop out of me – I struggled with a cold and nasty sinus headache throughout the entire day. I should have seen it coming; for the past two nights all I dreamed about was vacationing at a spa. I tried to walk it off in the late afternoon, hoping that nature’s beauty found within the clouds of an approaching storm would inspire me - perhaps shake out the cobwebs. But alas it wasn’t meant to be.
I have to talk about what can only be described as a heart warming sister-sister moment. While your mother was out partaking in a charity walk, I was watching you and Tari. At one point I couldn’t find your sister (despite the fact that I heard her speaking to someone). Well, I walked into your room and right then-and-there my heart melted; there was Tari reading to her best friend Sydni. She may not know how to read, but that sure did not stop her. “There can be no situation in life in which the conversation of my dear sister will not administer some comfort to me” (Mary Worley Montagu). Indeed – even at the age of innocence!
On Angels’ Wings sweetheart – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
The all-too-familiar sights and sounds of NEMC echoed aloud as you were unexpectedly re-admitted this morning. Initially you were brought in simply to be examined – as Mommy and I have been uneasy with (a) your excessive vomiting over the past few days and (b) possible (vocal) seizure activity. As it turned out, your counts were at zero and you had a low grade temperature (which eventually spiked to 101.4); so you will now stay put for at least forty-eight hours.
Your mother (once again) had a very long day at the hospital; I therefore came up to relieve her from mid afternoon until early evening. You were clearly uncomfortable and threw up quite a few times; it was only after I administered mouth care that you finally nestled into my arms for a nap. Days like today are ever so taxing on the human spirit. Nevertheless, I am reminded of an old Irish Proverb: “Even the longest day has its end.”
I am weary and weak, but today I still believe:
Lord, You have always given
Peace for the coming day,
And though of anxious heart,
Today, I believe.
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
I wasn’t able to see you today. Your blood work came back and you do in fact have an infection; as such, with my cold still lingering (even though I could have worn a mask) your mother and I decided it was best not to risk exposing you to my germs. Mommy tells me your vomiting has gotten much worse; a battery of tests will hopefully bare the root to your discomfort. Until then, we are reminded that this is indeed a marathon to be strewn with scores of peaks and valleys along the way.
Tari was asking for you more than usual this evening. I tried to give her some extra special attention as we watched her favorite shows and played hide & seek; my favorite flash was when your sister dressed herself for bed (she was adamant about wearing her pajama pants on her head). We had lots of fun – though my focus often returned to thoughts of how much she truly loves and misses you. I pray for the day when her best friend can always be by her side. "Sometimes life is hard to bear when a friend is just not there” (William Franc). Rest well tonight my daughter. You are in my heart and prayers.
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
The past three days have not been pleasant; my emotions right now are sapped - utterly shattered – so much so that I find myself at a complete loss for descriptive words. In fact, I can’t even come up with non-descriptive language to articulate my feelings. This is just so demanding across the board – an unremitting nightmare. How can one heart feel so heavy? Can the human spirit bend much more? You know what sweetheart – I don’t even want to put in writing how I feel; it is just too painful. Know this: my love for you and Tari transcends words. I am trying so hard to be a good father; as God is my witness I am trying.
I pray that the hope inside my heart and dreams within my mind are not far away. “To those who can dream there is no such place as faraway” (Anonymous).
On Angels’ Wings Sydni – On Angels’ Wings!
I love you with all my heart!
Dad
Dear Sydni,
Where do I begin today? An inflamed esophagus may be at the root of your excessive vomiting; unrelieved episodes of apnea have advanced concerns over breathing; Perkins School for the Blind called this afternoon, reminding me “oh yeah………”; And the list goes on.
Life indeed appears stressful at the moment (this being an understatement of epic proportion); even so, I was inspired by sorrow this evening. I do not profess to be a songwriter; however, I decided to channel my energies tonight by writing a song for you. I will never give up on you Sydni. From the bottom of my heart I love you and I Still Believe!I Still Believe
In my previous life never could I imagine,
What it meant to be challenged each day,
You see I once took for granted the simplest pleasures,
Blessings which have since gone away.
Just imagine my sorrow when my child they said,
May not live – she may never survive,
And to make matters worse it divided my family,
How I struggle to keep hope alive.
So in the name of the Father, and of the Son,
And of the Holy Ghost I pray,
I still believe Lord,
All I ask is – please - show me the way.
I still believe Lord, I still believe,
I’ll spread Your message should I receive,
Some sign of hope which You may leave,
I still believe Lord, I still believe.
I still believe Lord, I still believe,
I’ll spread Your message should I receive,
Some sign of hope which You may leave,
I still believe Lord, I still believe.
So what’s the message,
why must I wait,
My heart is breaking right now,
I will do whatever it takes for my children,
I am Yours, dear Lord, I avow.
O Praise
For in the midst of my praying,
God spoke right out of the blue,
He said “you’re chosen for a purpose,
It is your Faith that will let you through”.
I still believe Lord, I still believe,
I hear the message how to achieve,
It is through Faith that I believe,
I still believe Lord,
I still believe.
I still believe Lord, I still believe,
I hear the message how to achieve,
It is through Faith that I believe,
I still believe Lord,
I still believe.
I still believe Lord, I still believe,
I hear the message how to achieve,
It is through Faith that I believe,
I still believe Lord,
I still believe.On Angels’ Wings my daughter – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
We were fortunate to have Nurse Lin today from 8:00 AM – 6:00 PM; however, as fate would have it your daylong contentment ended as soon as darkness fell. Mommy watched you last night so this evening was my turn; not a good night as from midnight straight through to 5:00 AM you cried almost nonstop. Vomiting episodes were moderate though arching (your method for coping with pain) was pronounced. And of course Tari desired my attention at 3:00 AM, 4:00 AM & 6:00 AM (Mommy slept on the second floor in order to rest soundly, which she both needed and deserved) so sleep was not in the cards for me during this watch.
I am not complaining. Yes, your mother and I are physically exhausted; our minds are at times weak & weary; but we will find a way to conquer our lassitude. “Let me not pray to be sheltered from dangers, but to be fearless in facing them. Let me not beg for the stilling of my pain, but for the heart to conquer it” (Rabindranath Tagore).
On Angels’ Wings dear Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
In my opinion today was your first pleasant day in weeks; I am guarded to pronounce anything more optimistic at this time. You were adorable in your pretty pink outfit; oh how your mother, Tari and I love you so!
This afternoon (while returning from running an errand) I pulled over a few blocks from our house to take a moment and smell the fresh air; to simply catch my breath. And as I gazed upon the downtown Boston skyline, it struck me: we no longer have a home in which we can simply “catch our breath”. Our family goes directly from one hospital (New England Medical Center) to the simulation of a hospital at a location which was once called our home. Nurses are present all day long and into the evening hours; friends and strangers have rallied to our side this week (sleeping overnight to assist with your care while Mommy and I try to maintain our sanity by getting some much needed rest); but as a result, I now have to put my pants and shirt on if I just want to get a cold glass of water in the middle of the night (I am not complaining though – we are desperate for sleep and very appreciative to these caring friends); medical equipment, medicines and charts consume the kitchen, the refrigerator and your room; as an example, last night was sweltering and I could not walk around my own home without wearing a shirt because a nurse was present. And there is no end in sight.
This sobering insight has afforded me a better grasp at the root of (at least a portion of) our family’s overwhelming stress. I turn to prayer as I ask God to guide us towards a way out; to help us get back up on our feet. “God shall be my hope, My stay, my guide and lantern to my feet" William Shakespeare).
On Angels’ Wings dear Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Today had a wonderful family feel to it: you had a second consecutive “agreeable” day; Mommy and I opened our hearts to each other as we discussed accepting the differing roles and responsibilities thrust upon us in our new reality; and Tari was the picture of a child filled with love and happiness. As a matter of fact, this day had such a warm feel that your mother and I accepted a last minute dinner invitation to a BBQ with our dear friends (Chad & Kathryn) who live just down the street. It was our first night out - together as one - since God chose to put our Faith to the test.
After packing up your medical equipment & meds - we were off. And what a fun family night it turned out to be. With the exception of an extremely violent vomiting episode that occurred along the four block drive, you were a champ all evening; Tari could not have been more playful – and her innocence was endearing (upon our arrival, your sister exited from the car and declared to a passing stranger: “Sydni just threw up”); & of course the BBQ was ever so savoring; it was a normalcy not recognizable but we genuinely delighted in the gift of the moment. “Only when your consciousness is totally focused on the moment you are in can you receive whatever gift, lesson, or delight that moment has to offer” (Barbara De Angelis). Today, my dear Sydni, I still believe!
On Angels’ Wings my child – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Your mood today was tetchy and vomiting sporadic; overall I would give you a C+. Your mother and I did have some breathing room this afternoon, however, as Nurse Christine put in a full eight hour shift (despite it being the weekend). Freedom being a rarity these days, we jumped at the opportunity by taking pleasure in family time with Tari: the playground at Castle Island; French fries, a hot dog and ice cream at Sully’s; and lots of smiles on your sister’s face; it was time well spent – quite priceless.
With Spring in the air, I also made sure to take a moment and appreciate the beauty of a blooming tree or budding lilac. The colors of nature raise my spirits to an unspeakable high. “Nature always wears the colors of the spirit” (Ralph Waldo Emerson). Until tomorrow…..
On Angels’ Wings my dearest – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
While Nurse Christine was with you from 8:00 AM – 8:00 PM on this quiet Sunday, the rest of the family broke off in different directions: Mommy spent most of the day attending a baby shower in western Massachusetts; Tari split time between Nana & Papa’s and Aunt Carolyn’s house; and I – hoping to work all afternoon - unexpectedly fell asleep at my desk for nearly four hours. All-in-all, it was a quiet day (for yourself as well).
You were extra cuddly this evening during a visit from Nana & Papa. While you snuggled within the safety of Nana’s arms, our hearts were warmed as we fixed our eyes upon your tiny little hands grasping onto her loving fingers. It felt good to smile this evening. “The world always looks brighter from behind a smile” (Author Unknown).
Our dear friend Noelle is caring for you overnight so your mother and I can be assured of rest. Sleep well sweetheart. May the dreams within my heart become the realities of your tomorrow.
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
May 16Dear Sydni,
I have said this before but it’s worth repeating: I am forever thankful that God brought you into my life! You have awakened the spirit within. Today, while observing your grit and determination (during physical therapy) I was inspired like never before. The expressive look on your face this afternoon was all telling: resolve; strength of mind; courage; “staying power” - it was empowering. You simply refuse to give up! It was as if you were proclaiming “Setbacks, Daddy? What recent setbacks? That was yesterday”. “It's no use going back to yesterday, because I was a different person then” (Alice in Wonderland by Lewis Carroll).
A colorful setting sun closed the chapter on this hopeful day. Rest well my angel - may the dreams within my heart become the realities of your tomorrow.
On Angels’ Wings my child – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
The good far outweighed the bad over these past two days. Wednesday did pose more of a challenge as you kept me awake from midnight to 5:00 AM (sometimes I wonder if you have day and night mixed up). Anyhow, other than one rather forceful vomiting episode at 4:20 AM, it was all manageable. Although I did get a chuckle while cleaning myself off immediately thereafter; at least someone can sleep through the night!
Now the positive: you appear to be making enormous progress in physical therapy:
• You are moving your head (from side-to-side) on your own;
• You have begun to swat at your new mobile;
• When given a toy, you now attempt to play with it and/or grab at it;
• You are putting your hands together freely; towards your mouth; etc.
Your mother and I are guardedly delighted. Despite all of your complications, for the past two days you have been defying the odds by exhibiting normal baby traits (albeit at a slower pace). Lord knows patience is a virtue as we have a long, long road ahead; nevertheless, on this day a spark of hope was lit within our hearts. “Hope is patience with the lamp lit” (Tertullian).
Later, a walk along the shores of Castle Island provided the perfect backdrop for quiet reflection; truly, you lift me up beyond the most high!
On Angels’ Wings my daughter – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Today would prove to be a long & tiring day; mostly for you; somewhat for Mommy; & a tad for me. It all started with an MRI at NEMC; followed by a few hours of recovery (from the anesthesia); next was a trip to Children’s Hospital to have your magnetic shunt re-programmed; and after that, X-rays to confirm that the re-calibration was in fact accurately re-set. And in the face of it all, you were absolutely, without a doubt, the most adorable baby I had ever seen. At one point (this after seven long hours) you even looked up and gave me a smile; I am bursting with inspiration right now – you make my worst day seem like nothing more than a hiccup.
On the drive home, while sitting alongside you I was moved by your reflection in the window; a God wink if you will. For it has been through deep reflection that I have become enlightened; humbled. “Without deep reflection one knows from daily life that one exists for other people” (Albert Einstein).
Rest well my angel - may the dreams within my heart become the realities of your tomorrow. Today I believe!
On Angels’ Wings my child – On Angels’ Wings!
I love you!
Dad
May 20Dear Sydni,
O my beautiful child, I have no idea how to explain today’s update; how’s this for starters: it was a miraculous day! Picture this: huddled around a computer screen – analyzing yesterday’s MRI scan - were a score of radiologists and your oncologist. Radiologist: “Dr. Kretschmar, I thought immature teratomas don’t shrink with chemo?” Dr. Krestchmar: “Well (pause, insert look of utter bewilderment), they don’t”. (Insert silence throughout the entire room).
To everyone’s amazement, it appears your residual tumor unexpectedly shrank by almost 30%; this is unprecedented! I suppose Dr. Kretschmar, one of the top oncologists in the world for immature teratomas of the brain, put it best: “On a scale of 1 to 10, this is a 12”!Consequently, a fourth brain operation has been put on hold; instead, chemotherapy will re-start on Monday. Your mother and I remain guardedly optimistic; however, I’d be lying if I didn’t admit that we allowed ourselves to savor such remarkable news. We celebrated by taking pleasure in a family BBQ at your Aunt Paula’s house. And then, after returning home, Tari and I prayed to God; in your sister’s own words: “Dear God, please bring my best friend Sydni back; and bless her; and make her better. Amen”.
My dear Sydni, I do believe in the power of prayer; from the bottom of my heart I believe! And although I recognize that this journey is far from over, today God gave Mommy & me a wink. He hears our prayers; and with them the cries of everyone else from around the world. In the name of the Blessed Mother, St. Anthony and Jesus, I pray aloud:Hear my prayer O Lord,
From my heart and my soul I cry,
Praise God - You lift me up,
To places beyond the most high.On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Other than the now-anticipated-don’t-be-surprised-can-happen-at-any-minute vomiting, uneventful would best define your day. No curveballs, limited irritability and lots of rest; I’d give you a B+. The highlight of today came about while the family (i.e., you, Tari, Mommy & me) spent quality time at a parade (in Southie) honoring the crew of the USS John F. Kennedy. Mommy couldn’t help but notice how young those brave soldiers all were; and of course Tari kept asking “where’s Elmo”?
In a word, today was simply ordinary; but I’ll take it. “Appreciation of life itself, becoming suddenly aware of the miracle of being alive, on this planet, can turn what we call ordinary life into a miracle” (Dan Wakefield). Until tomorrow………..
On Angels’ Wings dear Sydni – On Angels’ Wings!
I love you!
Dad
May 22Dear Sydni,
Never a dull moment at 65 Marine Road: the medical equipment (relating to your feeding tube) malfunctioned in the wee hours after midnight; (whereas you are on a round-the-clock feed) that meant someone had to manually insert a syringe and feed you every six minutes (round-the-clock of course). Yes indeed, stress comes in all shapes and sizes these days.
We were fortunate in that Nurse Christine eventually arrived for an 8-hour shift (when she just as easily could have spent her Sunday relaxing at home). Even still, tension seemed to fill the air (it didn’t help that Tari was rather rambunctious this afternoon - on a day that was better served in the course of peace-and-quiet). So I took your sister out of the environment: we first attended the Boston Red Sox-Atlanta Braves game at Fenway Park (which lasted for seven potty trips – or, in layman’s terms, four innings); and following that adventure was a trip to the playground. By the time we returned home some five hours later, Nurse Christine had a new medical appliance working properly; you were irritable yet under control; and Mommy was afforded a well deserved break from us all. She has been determinedly by your side day-in-and-day-out; and a complete rest was just what the doctor ordered. “Sometimes the most urgent thing you can possibly do is take a complete rest” (Ashleigh Brilliant).
This evening your mother, Tari and I attended an art exhibit; one of our dearest friends (Opie Otterstad - along with his wife Buffy and son Tris) was in town from Houston while his paintings were on display at an art gallery in Boston. Although Tari slept throughout, it was a rare opportunity for Mommy & I to be out amongst friends – even if only for two hours. A day that started amidst organized chaos ended within an atmosphere of composure and relaxation (your demeanor included). Until tomorrow…………
On Angels’ Wings my child – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
This morning started with a surge of Patriotism; I ventured down to Castle Island for a glimpse at the aircraft carrier USS John F. Kennedy as it left port. Since January 14th your mother and I have been living our life (for all intents and purposes) within a box; I felt an emotional need to temporarily step out of the box in a show of support for our troops.
Today a new round of chemotherapy began. It was pretty much the same routine: Mommy brought you to NEMC for re-admittance; you both waited in clinic for hours until a room was readied; I took Tari to school in the morning; worked for a few hours; before I could blink it was time to pick your sister up; she and I then joined your mother and you at the hospital (so everyone could be together as a family); we stepped away briefly for dinner; and then after our meal was finished, Mommy and I split up – myself spending quality alone time with you and she doing the same while playing games with Tari.
Tonight a powerful visual made me feel so blessed. Your sister was playing with a patient named Jack (both are almost three years old). Jack has endured countless surgeries, radiation and is now undergoing chemotherapy. As they played together, I couldn’t help but notice an ear-to-ear scar crossing over the few remaining strands of hair left on Jack’s head. This happy young lad also was required to wear a mask (to protect his deficient immune system from exposure to germs). But that wasn’t the visual; no, it was of two children laughing heartily and playing enthusiastically despite appearances and surroundings. Tari cared not about Jack’s outer shell; and Jack’s unreserved happiness (in the face of his challenges) reflected the purest of innocence. It was an overpowering image.
I walked back to your room overcome with emotion. Your mother, Tari and I are undeniably bearing witness to an extraordinary experience; why is it that I feel so blessed? So thankful? So enlivened? I do not know how this script will play out; but I do know this: the journey is the reward. “It is good to have an end to journey toward; but it is the journey that matters, in the end" (Ursula K. LeGuin).
On Angels’ Wings my dear Sydni – On Angels’ Wings!
I love you!
Dad
May 24Dear Sydni,
Day Two in this latest round of chemo went okay for you; then again, the vomiting continues to persist so your mother & I remain unsettled. We do recognize that this incessant, forceful throwing up could be chemo related – but something just doesn’t feel right. As such, Mommy & I pressed the issue today when in consultation with your doctors. You are in wonderful, caring hands at NEMC; but that’s not the point. Your mother and I want answers – not theories and/or conjecture.
Today had a (good) peculiar feel to it. On the one hand, my seven month old daughter – but five months removed from being on her death bed – was sound asleep in my arms, getting a high dose of chemotherapy and, most amazingly, still fighting on; on the other hand, my three year old daughter and wife could be heard laughing and frolicking while hidden within a makeshift fort on the other side of the hospital room. My only thoughts: we can be happy no matter where God takes us; as long as we are together as one. It was a comforting feeling; I was in a good place today. I still believe Lord, I still believe!
On Angels’ Wings Sydni – On Angels’ Wings!
I Love you!
Dad
Dear Sydni,
You were discharged today which was quite pleasing to your mother & me (as this was your shortest stay to date (in the hospital) following chemotherapy). Other than that it was a rather mundane day: I was busy driving around town getting your meds squared away (although I did stop briefly at Castle Island to catch glimpse of the Nor’easter passing through); Mom tended to your needs during the morning and afternoon hours; dinner time was sort of on the go (while I prepared for a two day business trip, Mommy performed a series of stretching exercises on you – all geared toward strengthening your neck muscles); and then later at night I (eventually) settled you down with a soothing massage. As you slept ever so soundly, for once I did a whole lot of nothing, and it felt great. “How beautiful it is to do nothing, and then rest afterward” (Spanish Proverb). Until tomorrow………….
On Angels’ Wings my daughter – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
These past few days were quite trying. I left your side for a two day business trip (to Miami); and before the plane ever left the ground, I was already missing you. To say the least, it was an emotional struggle being that far away. Oh how I love you so!
During my down time, the atmosphere surrounding Miami Beach encouraged deep reflection. You, Tari and Mommy never left my mind. In particular though, I was constantly drawn to the image of your mother’s sainted efforts; she has been a tireless and determined force by your side. When an opportunity finally arose to put pen to paper, I wrote the following in tribute to Mommy:Mother, I Love You So Much
If they could only see what I see,
You always by my side,
On an angel’s wing from heaven,
Sent to be my guide.
Your sacrifice and caring ways,
Are selfless like no other,
You’re this family’s Rock of Gibraltar,
I so love you mother.
Mother, you’re God’s blessed gift for sure,
Mother, oh how your love is ever pure,
Mother, where would I be without your touch,
Mother,
I love you so much.
Mother, you’re my rainbow each and every day,
Mother, your faith inspires me to pray,
Mother, where would I be without your touch,
Mother,
I love you so much.
Your love is the greatest gift,
That I will ever know,
A perfectly painted canvas,
Like Picasso or Van Gogh.
You’re my best friend and if I could,
I’d ask the world to pray,
For you, the greatest mother,
Today and every day.
Mother, you’re God’s blessed gift for sure,
Mother, oh how your love is ever pure,
Mother, where would I be without your touch,
Mother,
I love you so much.
Mother,
I love you so much.Rest well my angel - may the dreams within my heart become the realities of your tomorrow.
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Over the course of these past two days your mother and I gave you and Tari our undivided attention; it was your sister’s (3rd) birthday and we wanted to make sure the focus this weekend centered on family values and togetherness. The only time we segued away from this mindset was on Sunday; Tari’s birthday party (with her friends) was at the local pottery store and we decided you’d be better off at home with Nurse Christine (after all, it was only a two hour gathering).
On Monday (May 30th, Tari’s actual birthday), we all got together at Nana & Papa’s house for an enjoyable birthday celebration. Your irritability was limited to a mere two outbursts; otherwise, you were cooing and going with the flow. And Tari? She was the very picture of a happy-go-lucky child. From the outside looking in, it is difficult to imagine the trauma this family endures day-in-and-day-out. And I know why. Mommy & I are so proud to be your and Tari’s parents. In our darkest hours, it is you who have taught us how to cope. “Parents learn a lot from their children about coping with life” (Muriel Spark).
Rest well my angel - may the dreams within my heart become the realities of your tomorrow. Today I believe!
On Angels’ Wings dear Sydni – On Angels’ Wings!
I love you!
Dad
Dear Sydni,
Mommy and I were on opposing paths all day long: she escorted you to clinic @ NEMC; I brought your sister to her pediatric appointment; your mother then took Tari to the playground for a few hours this afternoon; I in turn worked for a few hours this afternoon; (while Nurse Lin watched you); Mom watched Tari in the early evening; I watched you in the early evening; then at 1:00 AM we swapped positions. Yes indeed, meet our new amigo - organized chaos. “Chaos is a friend of mine” (Bob Dylan).
If not for the hearty vomiting incidents (at NEMC) this morning, then you would have earned a much higher grade. The heck with it - I’m still giving you an A+! Sydni, may the dreams within my heart become the realities of your tomorrow. For today I still believe!
On Angels’ Wings sweetheart – On Angels’ Wings!
I love you!
Dad