We arrived in Orlando, exhausted from our trip, concerned about the state of my Dad's health but excited to share Neve with the Florida family. My Mom picked us up from the airport and I had Neve all dressed up in a cute little pink dress much to Hamish's dismay (he has a thing about not wanting to dress her too "girly" which I don't really get cause after all she is a GIRL!).
It was at this first meeting of Grandmother and Granddaughter that I realized how bad the family was holding up. We had been getting all the medical facts and heard the concern in the voices over the phone, but to read the truth in the body language of my Mother made it much more real and much more terrifying. There was a cloud over her face, the light was gone and there was a heaviness about her (and I don't mean her weight because she also looked like she was wasting away). She greeted us in the way one would expect but something was not quite right; she was not quite there. Her heart and mind were in another place and with another person. I knew then that we would not get her back unless and until we also got my Dad back. After 50 years of marriage the two were really one.
The next morning I readied to make my first trip to the ICU to see my Dad. Hamish set up his traveling office in my parent's home library and my sister Jen's nanny Pearl took charge of little Neve. Pearl is a wonderful caretaker who adores babies and having her standing ready to help out with Neve made it possible for me to be with my Dad (and at Publix). That first morning I dropped off Neve and Jen's three dogs curiously sniffed at the new arrival all swaddled up in her bassinet - then they all snuggled in - each trying to be the closest to the little breathing creature.
Over the course of the time we spent in Orlando, I would often come to pick up Neve and find her surrounded by her cousins and the dogs and the birds and Pearl. Everyone on the one couch in the family room together, hovering over a sleeping or eating or awake little Neve. Neve became their center of attention - a tiny magnet with incredible pull!
I braced myself as I drove to the hospital that first day - not really knowing what to expect. Having been told things were bad, I was determined to keep a stiff upper lip and remain positive no matter what I was feeling on the inside. My being in Florida it turns out was as much about being there for my Dad as it was about being there to support my Mom and sisters, so I vowed not to show fear or doubts but to remain positive. I understood the dynamic enough to know that negative only brings on more negative and increasing the negative was not going to get my Dad any better.
The nurse took me back to the ICU and instructed me on putting on the proper infectious disease gear. My Dad had picked up some very bad infections from being in the hospital for so long so to enter his room you had to wear yellow gowns over your clothes and plastic gloves. He was completely unconscious when I got there, but moving his body in a convulsive, repetitive motion. It started like a wave that rolled from his head, shoulders and hips to his feet and back. Two seconds of calm and then it started again - over and over and over and over again. He was sweating from the exertion but would not or could not stop.
Nurses would come and go, yelling commands loudly -- but no response other than the repetitive motion. The wounds on his face and neck due to the surgery that originally put him in the hospital were swollen and not healing well due to all of the movement. He was on a ventilator through a trache in his throat and had a feeding tube coming out of his nose. His hands were tied down to keep him from doing more damage. The room was loud with strange beeps and lights blinking and lots of machines with tubes coming out of them and going into him.
Right, ok, deep breath, keep your cool -- I could feel my Mom and sister Rebecca looking at me to read my reaction. The newbie again so soon - this time the ICU newbie! I walked over and took my Dad's hand and said hello in the loud ICU voice - "IT'S GAELY, I'M FINALLY HERE!". I wish I could say that he reacted to me, that he woke up, but no, that would not be until much later.
Days bled into weeks and the routine was set. Mornings with Neve, go to the hospital and relieve first round visitors, have lunch with my Mom at the hospital cafeteria (complain because they charge for crackers), spend more time with my Dad, then off to Publix to grocery shop then pick up Neve, then start dinner, baths, bottles, clean up, repeat. We ate dinner most nights at Jen & Rob's house but shared in the responsibilities - almost a communal lifestyle. It was all really a blur only delineated by the progress my Dad was making or not making - which was the constant conversation point.
We became a big presence in the daily routine in Orlando and I like to think that it helped to have us around. My Mom had been mostly staying alone in that big house and now she had a daughter, a baby and an office all set up in her house. She had taken over the running of the house (a REAL lady of the manor!) which was my father's traditional duty and I marveled at how she grew more confident in the role and showed such pride in the fact that she had not killed one single fish or peacock!
Neve worked her magic with her good natured ways. There was always someone wanting to hold her (or a dog wanting to lick her!) and she perfected the role of the distractionist. When Neve was around, the conversation could turn away from the sadness and towards hope. I don't think another person could have done more to raise the spirits of the embattled family. With Neve around it was ok to reminisce about childhood stories or to talk about innane things like bottles and poopy diapers. She even worked her therapeutic ways on Uncle Rob - she somehow always ended up in his arms at the end of his work day and the two were happy as clams while the ladies did a major wrap of "One Life to Live in General Hospital - the Orlando Edition". Really quite the soap opera!
After my Dad's surgery, when his neck had swollen up too much for him to breath on his own and the infections set in and his heart decided it was all a little much for it to deal with, the doctors had put him on a number of powerful narcotics. His body was in constant motion with this involuntary convulsion thing and that caused the doctors to prescribe more and more drugs. We had very experienced ICU nurses tell us they had never seen anything like his constant movements and when an ICU nurse seems scared, you pay attention. These were dark days.
Turns out one of his heart medications was behind the involuntary movements. This was something my sister Jennifer had raised with his medical team just as the movements started. But the big ICU docs and surgical teams thought they had it all figured out and dismissed her outright. It was only after we fought (and I mean fought) to have a neurologist check him that the neurologist focused in on the same heart medication that Jennifer had identified as a problem weeks before and ordered that it be reduced and ordered that my Dad be weaned off the narcotics.
The progress was slow going but eventually the movements lessened and he began having waking and talking periods. He was in his own little world (and could actually be quite funny and quite sweet) and in time came all the way back to us - just like some darn miracle.
My Dad has made a full recovery and we feel like we have been given a second chance as a family. At certain points during his time in the hospital I can tell you that no one thought that was going to happen. We were in Florida for almost five weeks, three or so of which he was conscious but he only remembers the last day or two we were there. For the rest, he was in a fog of drugs.
There were so many moments and memories during this time that I won't soon forget. The ICU nurse we did not like, yelling at my Dad "Mr. Sparks, Mr. Sparks, Joey Sparks open your eyes if you can hear me" and no response! The multiple feeding tube disasters that almost always seemed to happen on the weekends when no one was around who could actually put the darn thing back in. I spent most of my first Mother's Day in the hospital on just such a Sunday with Jennifer, Rebecca and my Mom. All the Mom's together fighting for the patriarch. There was the time that Rebecca taught my Dad to use the nurse call button before he had really regained all his mental capacities and he spent the day calling in the nurses every five minutes (and because she was our least favorite, we let him go at it!). Classical music and Greensleeves (my Dad's favorites) being played over and over for hours at high volume until we were all driven insane by it and then when my Dad did wake up, him telling us to turn it OFF!
There were many mornings that I was sent in to the hospital with orders from Jennifer on demands to be made and doctors to be paged and diagnosis to be questioned - which I carried out with great "bad cop" flare. I organized a book to keep track of everything related to my Dad's patient care so everyone would know what was going on. I got the reputation as the "attorney" daughter and was treated with caution by the hospital staff. You've got to do what you got to do to keep your Dad alive so no regrets here!
All in all a difficult and stressful situation, but all in all a family strengthening experience. We came together and used our different skills to become medical care experts and health care advocates and family therapists. We were demanding, pushy, and fought like mad dogs -- and it worked. We took care of each other, we gave each other hope, we laughed because some times you just had to and we ate cafeteria salad for months straight and survived!
WE ALL SURVIVED!!
With Great Love,
G, H & N
And now we come to the end of this strange, wonderful, heartbreaking and magical story.
It took great will and determination to make a family and it took great will and determination to keep a family together. We fought for years to create a family of our own and at the end of this journey we have a wonderful daughter. She travelled the world from India to Australia where she charmed her Aussie family and then moved on to Orlando where she provided just the hope that was needed.
When called upon this same family mustered all of its powers to fight for a life on the line. And the someone so sick pushed through it all to come back because he wanted to be in his rightful spot at the head of his family.
A life created and a life saved. And so the world keeps turning . . . .
Love to you all --
G, H & N