I originally found the grieving room as a sidebar to my hanging out on the kos site during the current democratic primaries. When I was asked if I would like to write I graciously accepted because in fact it is one of the few times that I get to speak about my son. I find it unwise to talk about my son, Dante with my mother much because she gets really depressed really quickly. I talk about him on occasion with my boyfriend but I find myself reluctant to monopolize our time together talking about him too much. Aside from the two mentioned I really don’t talk about my son with anyone else.
The aftermath of his passing has unfortunately left me pretty much to my own devices in that, don’t really have too many friends. It’s kind of a challenge right now to make new friends. Those "once upon a time" friends have pretty much taken steps back which actually started when my son was sick. The classic "Hollywood" response where people come over to check on you or offer to go shopping for you or cook etc. was not part of my experience either during or after my son’s passing.
Those of you who have had to deal with a terminally ill family member might relate to this – people tend to back away because they don’t know how to deal with the situation. And so it went with this situation and continues to this day. So to be able to come here tonight and offer my musings with regards to my son is indeed a blessing. Challenging although it might be, opportunities for friendships can be in the places one least expects. Even here on Kos (smiles)
An FYI - this is on the long side...
There are a myriad aspects to my son’s passing in 2007 and I am sure I cannot even begin to touch on the all in one sitting. I will however speak to some of the things that resonate with me and that struck me in dealing with his illness and subsequent passing in the event that someone out there is either going through the same thing or has gone through the same thing and can find some comfort and or relief through this.
My son’s descent into the madness of cancer started back in 2004 when he had a physical in order to obtain working papers for an upcoming summer job/internship with the local Transit Authority (NYC MTA). It was during that examination that it was found he had dangerously high blood pressure. I was actually called to the doctor’s office and urged to take him to the emergency room as a precaution and was informed that he would at the very least need to go on a no-salt diet or have to start taking blood pressure medication.
Let me just insert here that my son was a tall lanky teenager and that looking at him you would never even have thought that he was hypertensive.
After going back and forth with the E.R., we finally wound up going to see a cardiologist who decided to do a full workup including a heart sonogram, echo, etc. None of those things showed anything to be amiss either. It was, at the end of the exam that the technician hooked him up to the blood pressure reading machine that the nightmare began for us. His initial reading was 220 over 110 and if I hadn’t been sitting there looking at the machine directly im not sure if I would have believed it. I didn’t even know one could have pressure so high and still be alive. Here was my son sitting there like nothing was happening save the readings on the machine that were actually going up as we were sitting there looking in stunned silence.
The cardiologist made an immediate decision to admit him into the hospital and at that point they were interested in looking at his kidney function. It was with this in mind that they set him up for a sonogram the following morning and that was when we found out. During the sonogram there was a large mass detected behind his bladder that was in fact pressing on his ureters – the tubes leading from his kidneys to his bladder and in fact was almost completely obstructing the flow of one of them.
I will never forget the day they told me – I was so numb and so shocked that I couldn’t even really react. It was like some horrible dream that wouldn’t end. The name of the monster that invaded our lives was Pheochromocytoma – a rare form of cancer that literally has the ability to affect one’s blood pressure – elevating it dangerously which makes surgery/excision a risky proposition more so than usual.
My son spent his entire summer in the hospital and more than half of that time was spent in Intensive Care hooked up to blood pressure monitors while the doctors tried to find a combination of medications that would keep his pressure from elevating. That portion of the story could be a diary by itself and I will therefore not say too much on that other than it was a two month nightmare spent up one day and down the next. But even more importantly it was an opportunity to marvel at the courage and bravery my son displayed in the face of circumstances that adults would have been challenged to overcome.
I spent literally every day in the hospital and two doctors, Mary Bauldauf and Donna Borukof were instrumental in helping us get through that time. I am sure however if you spoke to either one of them they would tell you that in actuality that it was my son that helped THEM get through. Not a day went by when I was not accosted by one or other of the doctors and staff who were so pressed that they just had to tell me how much they admired my son, and how impressed they were with the poise that he displayed to them in the midst of what actually was his first time not only IN a hospital but his first time even spending the night away from home.
I should say at this point that during the course of that hospitalization, his main concern was not if he would "make it" but that he wanted to go back to school ON TIME so that he could graduate with his classmates. Surgery was decided upon and was done – again im not going to get into those clinical aspects or even speak too much on that – understand and know that so much went on during this time that it would be a disservice to try and commit it all here while at the same time trying to be brief. I will just say that he did have the surgery – he was fitted with a Broviac Catheter which he had to keep in for a time and In spite of the seriousness of the surgery and his time spent in the hospital all that summer – he did, to the amazement of the staff at his high school, East New York Transit Technology – go back to school on time. Because of the hard work and effort he had put in before all this transpired – he was unanimously elected Valedictorian of his graduating class and if there is a more moving moment than watching your son who almost lost his life just only months before giving the valedictorian address I am so sure I do not know what that could possibly be.
It was my son’s decision even before all this started that he would go to college and in fact everything done was done as it would have been without the "diagnosis". He applied to several colleges, Howard, Temple, Drexel and others. He was accepted to all of them. He finally decided on attending Drexel after finding out that he had been named a Drexel Scholar and offered a substantial academic scholarship to attend honors college in pursuit of a degree in Civil Engineering.
When he went away to college I had no trepidation in my heart. We knew that his pressure was under control and that was the main concern at that point he had been before and during this whole ordeal asymptomatic so he wasn’t really suffering any other adverse affects or in any way unable to function normally. When he called me one day to tell me that his new team of doctors in PA wanted to try and surgically remove the remaining mass I took it as yet another of his many "surgeries" and just made the mental jump to figuring out how I would have to arrange my schedule and time so that I could go and be with him, post surgery until he was able to manage on his own.
I have read numerous accounts of individuals who "knew" when someone close to them passed. Stories about "feeling" something or seeing a presence or a visitation or such. I can’t lay claim to any of those things. In fact I would have to say the opposite in my case in that up until the actual moment that the doctor said the words "he’s gone" I had absolutely no clue what happened.
It bears noting here that my son was a major railroad enthusiast and actually had appeared on a documentary about the NYC subway system – NYC Underground(look for the kid with the navy blue Transit Tech T-shirt). After receiving the most incredibly devastating news that one can imagine I somehow managed to make it back home to New York and I had to ride home on Amtrak. I was in tears the whole ride back and received some harsh stares from passengers who I can only imagine were worried that their ride would be interrupted by the "crying passenger". That was the most difficult trip I have had to make and to this day I am only able to ride the subways with great difficulty.
Afterwards was mostly a blur with one notable exception. Because of his interest in subways and transit systems, my son was actually a part of several internet groups and message boards with fellow enthusiasts. One of the things I was able to get done was to contact the board that he hung out at the most and let his friends know what happened. I was so totally unprepared for the response that came back. I know he had a few friends he hung out with and I also knew that he would go on "excursions" that would be basically trips for enthusiast on vintage cars on the subway system but I had absolutely no idea how many lives he touched. Within hours of getting the message out about his passing I had received no less than 200 emails from people from all over the world, some who have never met him in person but were so very touched and impressed with him that they felt compelled to contact me. People from all walks of life and all cultures all races and all religions.....I hadn’t really had that really big cry up until then. But when I started getting all these emails – from young and old, fathers, mothers, brothers etc I cried....but it wasn’t so much in sadness it was with realizing how much that he meant not just to me but to others as well. I was completely overwhelmed. At his funeral a large contingent of his fellow enthusiasts mainly from the SubChatmessage board showed up and we celebrated the life that he led by joining together in this song:
Life is like a mountain railroad, with an engineer that’s brave;
We must make the run successful, from the cradle to the grave;
Watch the curves, the fills, the tunnels; never falter, never quail;
Keep your hand upon the throttle, and your eye upon the rail.
Bless'd Savior, Thou wilt guide us,
Till we reach that blissful shore;
Where the angels wait to join us
In Thy praise forevermore.
You will roll up grades of trial; you will cross the bridge of strife;
See that Christ is your Conductor on this lightning train of life;
Always mindful of obstruction, do your duty, never fail;
Keep your hand upon the throttle, and your eye upon the rail.
Bless'd Savior, Thou wilt guide us,
Till we reach that blissful shore;
Where the angels wait to join us
In Thy praise forevermore.
You will often find obstructions; look for storms of wind and rain;
On a fill, or curve, or trestle, they will almost ditch your train;
Put your trust alone in Jesus; never falter, never fail;
Keep your hand upon the throttle, and your eye upon the rail.
Bless'd Savior, Thou wilt guide us,
Till we reach that blissful shore;
Where the angels wait to join us
In Thy praise forevermore.
As you roll across the trestle, spanning Jordan’s swelling tide,
You behold the Union Depot into which your train will glide;
There you’ll meet the Superintendent, God the Father, God the Son,
With the hearty, joyous, plaudit, "Weary pilgrim, welcome home!"
Bless'd Savior, Thou wilt guide us,
Till we reach that blissful shore;
Where the angels wait to join us
In Thy praise forevermore.
The loneliness will probably never pass, the sense of loss is still there but perhaps not as much as it was initially. I am somehow managing to continue to go to work every day and function although I am oftentimes left feeling incredibly bereft. I find myself fighting every day to remind myself what my son Dante, taught me in his short time here, namely your life is what you make it be and no matter what transpires it is not the problems that you face but your reaction to the problems that will tell the tale.