* A small victory; independently breathing
Stephen Pecevich, a single dad of three in the Boston area, had his life take a complete detour when his youngest child was diagnosed with cancer before she she was even 60 days old. Follow the story of how this devoted father found faith and strength on what Stephen calls “a life detour”, as we publish regular excerpts from Stephen’s own memoir, which will be available in its entirety in the near future.
You stepped forward today (figuratively speaking of course). Your dedicated overnight nurse said you slept well all throughout the night (your first good night’s sleep). And then, at 11:00 A.M., the ICU staff began weaning you off the respirator.
It has now been nearly six hours and for the first time since your wretched surgery you are breathing strong on your own. Based on recent discussions with your neurosurgeon, I had been concerned that you may require a permanent Tracheotomy. But today you are surpassing all expectations based on where your doctors thought you would be at this early stage of recapturing an opportunity at life.
Breathe strong my angel. You can do it!
This morning a friend of mine brought over a bottle of holy water, which was taken from a spring in Lourdes, France. Millions of people from all over the world go to Lourdes yearly with the hope of obtaining help from the Blessed Mother. I sponged this sacred water lightly across your forehead and will dab it upon you nightly as I pray for a miracle.
I was able to be with you for but a hint of time today. The Boston area is expecting a blizzard tomorrow. And even though this was the first day where I’ve had a babysitter for Tari for any meaningful stretch of time, my day was still a blur. Nevertheless, those six hours of alone time allowed me to catch up on everyday issues which I have been forced to abandon over this past week.
I am not complaining though. I will neither find fault nor place blame surrounding our present reality. It’s just … you see, life is like a wheel in perpetual motion. It doesn’t stop simply because you (and we) are faced with this overwhelming tragedy. But that’s ok.
“Life’s not always fair. Sometimes you can get a splinter even sliding down a rainbow.” (Cherralea Morgen)
The time we did spend together today went as such: at the end of the day I drove to the hospital through two and a half hours of dreadful traffic (a drive that normally would have taken twenty minutes on a bad day) simply for an opportunity at a goodnight kiss.
After which …I had to immediately reverse course in order to fight through the (by then) worsening rush hour logjam so I could pick up your sister, who was being watched by Nana & Papa. It was the only time I spent with you today. But know that they were the best minutes of my day, quality time well spent.
I must tell you, my daughter, the power of prayer is awe-inspiring. You are being prayed for from as far away as Sweden and Australia. In just one week, your blessed spirit and determined will to live has strengthened the faith of thousands from around this country and hundreds throughout the world. Time will eventually enlighten my soul as to why God so chose you. Until then, I will continue to faithfully lean upon prayer as I draw down upon all of my emotional and devoted strength.
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Let’s start with the bad news and end with the good.
Last night Mother Nature let loose a merciless Nor’easter upon Boston – 26 inches of snow (and it is still falling)! Whereas I had Tari under my watch all day long, I wasn’t able to shovel out our car because I couldn’t leave her alone in the house (and even if I could, every media outlet was reporting that most streets were impassable; as such, advising the public to stay inside their homes for safety reasons).
City living and off street parking tend to go hand-in-hand. And so, whenever a typical New England blizzard pays a visit, the streets of South Boston more often than not come to a grinding halt. Today was no different.
At any rate, the bottom line is, I did not have an opportunity to visit with you today. This was the first occasion since January 14th where I wasn’t able to kiss you goodnight. I was not prepared for the emotional swing which would soon follow. The sadness within my dispirited heart was more than I could have ever imagined. I must have spent half my day gazing at your photos because I missed you so.
By the way, you should know that Tari’s innocence took full advantage of this window of opportunity while I was reminiscing. Using the term “mischievous child” would be letting her off lightly. But it was all good clean fun for sure. What did she do? Well, let’s just leave it at this regarding the end result; your sister spent hours sitting in the bathtub while I/we tried to scrub the paint off her face!
At the close of the day, Tari and I said a prayer, as we always do, asking that God Bless you. Your sister asks about you so so so often, Sydni. She doesn’t quite get what is happening right now, as no 2 ½ year old preschool child would [or should] understand. Then again she does distinguish something to be amiss. Tari so desperately wants to help her little sister. Time after time she keeps insisting that I take her Blue’s Clues band-aids and place them on your boo-boo.
She tells me it’ll help you get better quickly. Such purity and innocence … how did I never before recognize the blessed spirit that resides within my own children? Were my eyes always so sightless? “Blessed are they who see beautiful things in humble places where other people see nothing.” (Camille Pissarro)
My dear daughter, dare I ask why this journey is happening to you? To me? To us?
Could appreciation of such innocence be but one of the scores of lessons which the Lord above is trying teach me … by way of your suffering?
Sydni, I hope your sister cannot see the deepest worry which lies buried within my moistened eyes, brought on whenever she talks of you. Surrounded by an inner disquiet, which I suppose is every father’s right, I remain so concerned for Tari’s emotional state during this challenging time in our lives.
Okay, now for the good news: this afternoon the ICU doctors took you completely off the respirator. You were breathing entirely on your own today – with not one machine on standby to assist you. I am so pleased! As well, okay – for the time being at least, your seizures appear to be under control with your current meds. For that reason, the ICU staff also removed your seizure monitoring device.
You must feel so much more comfortable now that those forty electrodes and forty accompanying wires have been removed from your scalp. Soon, your nurses will also be removing the catheter from your kidney. After which, the nurse plans to bathe and clothe you (this will be your first time wearing a new outfit since you were admitted). You have been very alert all day which is at least a step forward all things considered.
What was my “true hope” moment of the day?
The neurosurgeons feel your cerebrospinal fluid is draining so well that they are now of the opinion that a permanent shunt might not be necessary. And your ventricles had decent pressure, so the draining tubes may be removed from your skull sooner rather than later. But wait … it gets better!
Today, you are being moved to another Intensive Care Unit because you are now the least critical patient in this particular Intensive Care Unit! Two days ago you were the most critically ill patient in the unit. Your neurosurgeon originally told me it might be months (at the very least) before you could leave ICU. And now this miraculous turn of events comes to pass?
Dare I consider it a glimmer of hope? Keep on fighting my child.
And I will keep on praying.
Sweetheart, in having to cope not only with your cancer but also with the concerns of whatever adverse outcome(s) which may or may not emerge as a result of your brain damage, everyone in this family will at some point face our own personal fears of the unknown, including Tari (though, despite her probable confusion already – I pray that the innocence of a child’s resilience will hold her hand throughout). Speaking for myself only, I expect that God will test my emotions all the way through.
I don’t doubt that I will get discouraged from time to time. Perhaps, I’ll even question my faith. But I envision any such uncertainty or doubt will be part of God’s test. And it is up to me…no, it is up to us…to show God that we trust Him.
I acknowledge that the road ahead will most likely lead me to a far-reaching and emotionally fatiguing experience. But as Joel Osteen suggests time and again within his touching orations: “I refuse to live my days defeated”. Something truly special is happening here. Yes, you heard me right. Even in the face of my anguished heartbreak, I faithfully believe this to be true.
God is hearing the prayers of one and all from around the globe. I know it. I see it in your eyes. And everyone else who is in your corner knows it too. Up to now, “all that I have seen teaches me to trust God for all I have not seen.” (Author Unknown)
God is bringing people together – because of you – for a special purpose; for an extraordinary purpose. I don’t know why you were chosen. I did not want my child to be special. I’d rather be rocking you to sleep at home as I held your healthy body. I don’t know where this crossing may lead us. God’s overall greater plans are most definitely well beyond my scope of understanding. Truth be told, within humility, I’ll even admit that of course I wish another soul were chosen instead of my own daughter…and my own family. Nevertheless, I sincerely do trust God and His Greater Plan.
I will stay within my faith. So let it be written. So let it be done!
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!
Stephen Pecevich is a former
financial services professional,
loving father of three,
songwriter, and poet.