Getting up to speak never frightened or scared me, until the day I had to eulogize my dad. My mom told the purple balloon story, my sister talked about how they had so many special places together, it couldn't be just one where she would feel or think of him, and then it was me. His youngest daughter that felt like a part of me died when he did because we were that close. I didn't want to cry in front of everyone, but every time I practiced at home I would end up in tears and choke on my words. But here is what I said about my daddy:
"My whole life I had heard that I had a special connection with my dad. I know that every person in this room and beyond also had a special connection with my dad, but this one didn't grow with time, but happened instantly and was unconditional from the start. From the earliest of memories, dad told me how he was allowed into the nursery when I was born, which was totally different than when my sister was born - sorry about that. He would brag about this almost every single birthday of mine, especially about how special it was to hold me and about the moment I reached for his finger. He knew instantly we had something special. We always had a special relationship. Whether it was how we talked to each other or how we goofed around, we were something special.
We loved spinning on the tea cups at every Disney park we went to; we were spinning buddies through and through. And at Disney there was no way I would drive on the Tomorrowland Speedway or Autopia without Daddy in the passenger seat. Even in my late 20's, which you can see pictured in the collages, I still insisted that daddy be my passenger. And I assure you, I would still to this day want to spin in the tea cups with him or be my passenger in one of those cars. That was just daddy and me.
Not only did I get my dad's features (no paternity test required), but I also got his generous heart, which many if not all of you have expressed about my dad. He was a stand-in dad for a friend during their special LGBT graduation ceremony, he wanted children with different abilities and special needs smile, and most importantly, he was generous to his family. Staying home and taking care of two girls is a lot to take on but he was always there. He even nursed my mom when she was diagnosed with cancer after every appointment, tear, or harsh reaction to the chemo and radiation. He was one of a kind.
I hear how much he loved us all. No one needed to tell us that because we could all feel it and see it. He played a daddy bird to me at zoo camp when he flitted around like a bird to give his baby bird (me) a gummy worm and he was one of the only dad's there. He even volunteers to parade around a Disney restaurant and pay homage to the grill gods. Something that we all laughed about and enjoyed because he played up any character he could just to give us those smiles and memories.
He was a proud dad of my sister's and my academic accomplishments, including my sister studying at his Alma Mater and even getting to study abroad in England and when it came to me, my dad got my letter from the Jane Addams College of Social Work. I was going to see the family that night but I couldn't wait to hear the news so I asked my dad to read the letter. As soon as he got to the 'Congratulations' part, he was crying and telling me that I did it and he was so proud of me.
All daddy wanted to do was to be with his family and especially his girls - even if that meant calling us in 'sick' for the Cubs home opener. Dad's love was so deep that he even snuck his way into being a bridesmaid at my wedding. Seriously check the pictures, my sister is not alone up there, daddy is right there taking on the bridesmaid role perfectly. That's just how close and special we were to each other.
Daddy was a spark of pure love and generosity -not to mention a family man through and through. My wish is that through this immense loss, this spark gets passed on however it can. To your family, charity, or even strangers you don't know. While a giant part of me is missing because my dad, who was like a best friend to me is no longer here, I am hoping to try and fill that loss by carrying on his legacy of love and generosity with the help of all you. They are big shoes to fill, but we must carry his spark and pass it on whenever and wherever we can."
Sunday, January 26, 2020
Preparing to Memorialize Our Spark
The next few days until January 4th, the day we were hosting daddy's memorial felt like a heart wrenching, slow motion kind of torture. My mom, husband, sister, and I hung out every day working on memorial boards and just spending every day together - which sometimes ended up in just floods of tears.
We even took a day to visit my husband's parents to see them since we could not let them see dad in the hospital. It didn't get easier being around close extended family, I just kept breaking down. My father-in-law has always had a good relationship with me, but I think with my daddy's passing, he want to be more of a father figure. He suggested that my mother-in-law and father-in-law come over for New Year's Eve later in the day. My husband agreed and I tried to go along with it. As soon as they showed up, I felt so disconnected and just out of it. Like I couldn't enjoy anything or even communicate without crying.
As soon as midnight hit, my husband came straight over to me, kissed and hugged me and told me everything was going to be okay. Immediately I welled up with tears and ran into my bedroom and started balling with tears. I couldn't imagine a New Year with promises of hope and new slates when everything fell apart and I can't see the bright side of anything when a new year meant no daddy. No emails, no more birthday cards, no vacations, no more visits, no more watching the puppy bowl, not seeing my sister fall in love and get married, no hugs or "I love yous," and future dreams that will never be realized like being a grandfather.
It's hard when that all comes rushing into your mind all the time.
As soon as I collected myself I came out of my bedroom and everyone was packing up and leaving. I felt like I scared everyone out of our house but at the same time I knew it was too soon to "celebrate" anything.
After getting over that then we had to make arrangements at the funeral home. I felt totally out of it mentally and emotionally until the details came around. Death certificates, what should go on his memorial card, both versus and picture, and then it came time to pick out and urn and cremation details. The funeral director told us he would be present for the cremation and watch my dad go in and come out. At that point, in my mind, I had lost it. Thinking this wonderful person being reduced to dust or nothingness, killed me inside. I wanted to buy daddy's urn because we had a special connection and I chose an urn that has the color of the ocean and dolphins and is more rectangular, which I think is more his style. I was also very specific on what I wanted written on his urn and so it reads,
We even took a day to visit my husband's parents to see them since we could not let them see dad in the hospital. It didn't get easier being around close extended family, I just kept breaking down. My father-in-law has always had a good relationship with me, but I think with my daddy's passing, he want to be more of a father figure. He suggested that my mother-in-law and father-in-law come over for New Year's Eve later in the day. My husband agreed and I tried to go along with it. As soon as they showed up, I felt so disconnected and just out of it. Like I couldn't enjoy anything or even communicate without crying.
As soon as midnight hit, my husband came straight over to me, kissed and hugged me and told me everything was going to be okay. Immediately I welled up with tears and ran into my bedroom and started balling with tears. I couldn't imagine a New Year with promises of hope and new slates when everything fell apart and I can't see the bright side of anything when a new year meant no daddy. No emails, no more birthday cards, no vacations, no more visits, no more watching the puppy bowl, not seeing my sister fall in love and get married, no hugs or "I love yous," and future dreams that will never be realized like being a grandfather.
It's hard when that all comes rushing into your mind all the time.
As soon as I collected myself I came out of my bedroom and everyone was packing up and leaving. I felt like I scared everyone out of our house but at the same time I knew it was too soon to "celebrate" anything.
After getting over that then we had to make arrangements at the funeral home. I felt totally out of it mentally and emotionally until the details came around. Death certificates, what should go on his memorial card, both versus and picture, and then it came time to pick out and urn and cremation details. The funeral director told us he would be present for the cremation and watch my dad go in and come out. At that point, in my mind, I had lost it. Thinking this wonderful person being reduced to dust or nothingness, killed me inside. I wanted to buy daddy's urn because we had a special connection and I chose an urn that has the color of the ocean and dolphins and is more rectangular, which I think is more his style. I was also very specific on what I wanted written on his urn and so it reads,
"Our Spark
Howard Kalov
December 28 1957 - December 28, 2019"
His memorial card was also written by me by two of his favorite Disney character, Sonny Eclipse and Figment. It reads,
"Goodnight little star
watch and keep him till we meet again
in the glow of a love without end
shining brightly like you do."
watch and keep him till we meet again
in the glow of a love without end
shining brightly like you do."
Daddy, you will always be that One Little Spark to us."
Breaking down after that visit at the funeral home was so difficult. But we still had to try and focus and now plan how we were going to honor him on his memorial on January 4th 2020. I would just break down at home going through pictures to put on memorial boards but I knew what to do after that when it came to floral, décor, and how to pass on my dad's favorite charity for donations in his name. Most of this was a given. The floral arrangements were going to be the colors of Figment : purple, yellow, pink, and white. His charity of choice was Give Kids the World Village, which helps kids with other abilities or who are on a Make a Wish trip get to stay at this beautiful resort at no cost and be able to do thing like be able to go swimming in a wheelchair or ride a rollercoaster, plus there is ice cream 24/7.
The hardest part was picking out and going through pictures of my daddy. All I could see was a very happy and loving father and husband who was full of life and laughter. While that is a good thing to look back at, it is hard when you realize you will never see that smile or hear that laugh and you are left without a daddy or a spouse for the rest of your life. The three of us balled like babies putting the memory boards together but they really showed who he was. We separated the boards into categories: Loving Spouse, Family Get Togethers, Baseball Howard, Disney Trips, and Other vacations and trips through the years.
In addition to the boards, we had his Gift of Hope Medal displayed, the Give Kids the World Charity information, 2 purple roses by his urn, little mementos of him, and lastly purple Mickey shaped balloons. This may seem odd for a memorial but let me explain.
Through my mom's eulogy she shared this beautiful story of when they were dating and went to Disneyland. One of the restaurants they went to gave them Mickey balloons, which weren't practical for rollercoaster riders, as my mom pointed out. So they both decided to give their balloons to children who looked like they could use some Disney magic. My mom had a blue balloon and my dad had a purple balloon. Well my mom wanted to ride the rides as soon as possible so she found her kid pretty quickly, but daddy was taking his time. She, in the most playful way, told my dad he is going to have to find someone soon or they couldn't ride anything. Right as she said that, my daddy turned around and saw a young girl in a purple wheelchair, who appeared to have cerebral palsy. Daddy immediately went up to the parent asking permission to give the balloon to this girl and of course he got a huge yes. Daddy then asked the girl if she would be willing to take care of his purple balloon because the balloon wanted to be with her all day and that he would be honored if she would. This little girl was ecstatic because it matched her wheelchair and because of daddy's kindness. He tied the balloon to the wheelchair and told her thank you for taking care of this precious balloon.
That's the kind of guy my dad was. As a family we still give away stickers or gifted cookies we get at the resort because you need to make opportunities of magic whenever you can.
So that's why we honored him with purple Mickey shaped balloons.
When we had that all figured out, the hardest part was how to eulogize my daddy because he meant more than the world to me and was like a best friend. When you are not ready to say good bye and are still in disbelief how can you even find the words? He was the most loving, generous, and brightest spark of laughter and light, and anyone would tell you that. But as his little brown eyed girl i had to put into words 31 years of love, memories, and undoubtly heartbreak.
Monday, January 13, 2020
The Day We Lost Our Spark
December 27th later in the day daddy was taken off of life support. The breathing tube came out and he was trying to talk. From what I could understand he was asking where was he and what happened, but before we knew it those comfort care drugs kicked in and the last sounds I heard from my dad were incoherent and he seemed scared. We are going through a ton of emotions because none of us knew how long it would take for him to pass. One minute we are crying profusely, the next trying to make a joke seeing if we could get a smirk out of him. There was nothing but deep sadness and fear in that room. What would we do without daddy? What would mom be like without a spouse?
12:00am on December 28th 2019, was daddy's birthday, a day he always hated but made sure he would let his two girls make a big fuss over him. My mom, sister, husband, and I sang him happy birthday one last time. I felt like it was the least we could all do. We were swapping turns napping, but I never stopped holding daddy's hand. I stayed in the same position until the end. Somewhere around 4:15am, my husband wakes me up from sleeping on my dad's arm and tells me, it looks like this is the time. We are all standing around him saying how much we love him and his pulse went to 0 and then bounced back to 100. To me, I know there is a medical reason for it and it is stress related to passing, but I felt like he didn't want to leave us. Then at 4:40am his pulse starts dropping again and we are all saying I love you holding his hands and giving him kisses. At 4:45am daddy passed away and the spark in our lives was officially gone. The last things he heard was I love you daddy and B loves Fa.
We all cried waterfalls and were in disbelief. I never watched someone die, let alone someone I was so close to. Daddy was like a best friend and a big piece of me. When he died, I truly feel a big piece of me died that day too.
So now the nurses and doctors are checking that he indeed passed and is cleaning his body. Afterwards we are allowed in to say our final good-byes. I was last because this was my daddy and I couldn't face this horrible nightmare. I said, "I am going to miss my spinning tea cup buddy and my Tomorrowland Speedway/Autopia buddy, but most of all I am going to miss you daddy. I love you so much and unconditionally." Then I kissed his forehead which already started to turn cold and we left the hospital with his belongings and instructions for how daddy would get released from the morgue to the crematorium. It was the most surreal and upsetting experience I have ever gone through.
Mom, my sister, husband, and I went out for breakfast but all I could do was cry and barely eat. I must have cried that entire day. When my husband and I returned to our house I had to tell my Lucy baby (our Doberman) that Uncle H passed away and wouldn't be visiting her or giving her peanut butter anymore, but he loves her and we promised that every peanut butter Kong will be in his honor. Then I look at our Christmas tree. My fear of daddy never opening his Birthday or Christmas presents came true and the sobbing continued. My husband and I laid in bed with Lucy for comfort, but nothing can heal a piece of you that is lost.
Nothing can replace a daddy or the love we all had for him.
12:00am on December 28th 2019, was daddy's birthday, a day he always hated but made sure he would let his two girls make a big fuss over him. My mom, sister, husband, and I sang him happy birthday one last time. I felt like it was the least we could all do. We were swapping turns napping, but I never stopped holding daddy's hand. I stayed in the same position until the end. Somewhere around 4:15am, my husband wakes me up from sleeping on my dad's arm and tells me, it looks like this is the time. We are all standing around him saying how much we love him and his pulse went to 0 and then bounced back to 100. To me, I know there is a medical reason for it and it is stress related to passing, but I felt like he didn't want to leave us. Then at 4:40am his pulse starts dropping again and we are all saying I love you holding his hands and giving him kisses. At 4:45am daddy passed away and the spark in our lives was officially gone. The last things he heard was I love you daddy and B loves Fa.
We all cried waterfalls and were in disbelief. I never watched someone die, let alone someone I was so close to. Daddy was like a best friend and a big piece of me. When he died, I truly feel a big piece of me died that day too.
So now the nurses and doctors are checking that he indeed passed and is cleaning his body. Afterwards we are allowed in to say our final good-byes. I was last because this was my daddy and I couldn't face this horrible nightmare. I said, "I am going to miss my spinning tea cup buddy and my Tomorrowland Speedway/Autopia buddy, but most of all I am going to miss you daddy. I love you so much and unconditionally." Then I kissed his forehead which already started to turn cold and we left the hospital with his belongings and instructions for how daddy would get released from the morgue to the crematorium. It was the most surreal and upsetting experience I have ever gone through.
Mom, my sister, husband, and I went out for breakfast but all I could do was cry and barely eat. I must have cried that entire day. When my husband and I returned to our house I had to tell my Lucy baby (our Doberman) that Uncle H passed away and wouldn't be visiting her or giving her peanut butter anymore, but he loves her and we promised that every peanut butter Kong will be in his honor. Then I look at our Christmas tree. My fear of daddy never opening his Birthday or Christmas presents came true and the sobbing continued. My husband and I laid in bed with Lucy for comfort, but nothing can heal a piece of you that is lost.
Nothing can replace a daddy or the love we all had for him.
The Days Leading Up To Our Spark Dimming
On December 12th 2019, mom had called and said that you went to the doctor because you weren't looking well.
A week before that, you and I had a conversation about how I was worried about your health since you decided to go off your blood pressure medication cold turkey without consulting a doctor. You had told me you would talk to a medical professional about my concerns and knew I was coming from a loving and caring place. Though I was shocked and somewhat angry that you could do something so reckless and dangerous without knowing the consequences, I was at least happy you listened to me and understood why I could be so worried; after all, you are my daddy.
When December 12th came, it was more than a mere doctors visit. Your doctor, who has known you for at least 15 years, told you to go straight to the hospital. He wanted some tests done and you were definitely showing signs of jaundice. You were admitted to the hospital right away and signed all the papers you needed to in case things went south and medical measures had to be taken. You wanted to live. You wanted to be resuscitated. You were 100% lucid and awake, talking and complaining about being in the hospital which was so you daddy.
Of course I was busy with work so I went by my mom's word of mouth. I was busy planning our all company holiday party for the 13th and I wouldn't be able to see my dad until the 14th. I wish I dropped everything and went to the hospital that day because my mom made it sound like this was going to be in and out testing and nothing more, but little did I know, that would be the last day my dad could have ever talked to me or even hugged me.
December 13th came and mom told me that his blood pressure was actually good but he was retaining fluid in his abdomen now and would need to run tests on his liver and kidneys. When my husband got home, I just about broke down in the strongest way I could and we talked. I do not have a medical degree but I do have a Masters in Social Work so I am aware of some diseases brought on by addiction or other environmental factors. I told my husband, with my dad's symptoms there could be no way we weren't looking at the worst case scenario - cirrhosis. That would mean complete liver disease and failure so much so that there are only two ways to cure it - transplant or die.
December 14th came and I was finally able to see my daddy. He was knocked out from pain medication since they needed to drain fluid and attach more IVs, etc. He could talk if he wanted to, but he was so out of it, I am sure he wouldn't even know how to work his vocal chords or his mouth for that matter. Daddy was trying to pull every chord out of his body, so my husband, mom, and I felt like we were wrangling a cat in some ways. (I know he would appreciate that analogy.) Nothing could prepare me for just how yellow his skin was because I have never seen someone with jaundice and here I was looking at my daddy who could match a Crayola crayon. Then a doctor walks in and says that they have applied for a transfer to UIC hospital in case they had discovered his tests proved he would need a transplant, UIC would be the best place to get one.
So later on it was confirmed that my dad did have cirrhosis and we were looking at the worst case scenario. In the middle of the night on December 15th, daddy was transferred to UIC hospital's MICU where he was placed on medication that kept him asleep to not feel pain. By the time he arrived at UIC hospital, he was even more jaundice and yellow than before.
My husband had to work the week of the 16th-20th so his stomach was in knots since he would have to hear about my day and what was going on with my dad's condition. Every day that week we had to deal with more and more difficult circumstances. The first was talking with the Liver Team having them as both mom and I questions about his previous health, habits, and conditions if he were to get a transplant. We asked that they contact his primary care physician to get the liver information because even if there was something wrong he would have never told us. We did say he was an alcoholic; alcohol was a coping mechanism for the abuse and hardships he endured as a child, young adult, and even adult. Lastly they asked about conditions for getting the transplant. They had asked if he would comply to rehab and psychotherapy. My mom said yes and I said no. At the time I truly believed it and I explained why. I told the Liver Team that going through rehab alone and therapy alone would be so harmful for him and hurt him that I don't think he could be successful. He would need someone with him who has empathy and could hold his hand. Now I did admit I was conflicted because I wanted my daddy to get a second chance and live, but I knew he was facing some very harsh demons which got him here in the first place. So the Liver Team left and mom and I stayed until visiting hours were over.
I sat in the car silent. I didn't know what to say. And then the tears poured out and I couldn't hide my guilt any longer. I looked at my mom and balling my eyes out said that I was so sorry for what I said to the Liver Team and I really want to take it all back. I told her I felt like I alone condemned daddy to death because I wasn't as optimistic as she was. Of course mom reassured me (as well as my sister on the phone that night) that my opinion wouldn't be the only thing considered when it came to a transplant. But I still felt guilty and I really did feel like I condemned an innocent man to death.
The next day, tests were showing no improvement on the liver and now his kidneys were failing. He was getting put on dialysis and intubated for life support. I pulled my mom aside and told her I would never want to overbear her with decisions, but I feel like we should call my sister (who lives in Florida) and have her take FMLA for a few weeks and fly her in because she should be here. My mom said that's what I was here for to make those tough calls. So I went into the hallway, while mom stayed with my dad, and I placed a call that I was scared to make but knew I had to. So I called her and told her to tell her boss to get that paperwork ready that day because I was going to get her on a flight the following morning. Mom and I got her on a flight on United and had her returning on January 6th, which we could always change if need be.
So my sister comes in and I told her that I was not prepared for the sight that I saw so I would walk in with her and if she felt uncomfortable, we could walk out of the room for a while and then come back. My sister was fine but I could tell it was difficult especially seeing him hooked up to so many machines.
Then the Transplant Social Worker comes in and I am actually happy to see him figuring a) we could probably do some really good social work communication together and b) maybe I could rectify my guilt. So he really got a lot of information but definitely hurt my mom's feelings making her thing she had done something wrong by not throwing daddy out of the house for his drinking or other consequences. My mom couldn't do that to my daddy. He had been given up on and abandoned by everyone that was supposed to love him and my mom was not going to fall into that pattern. So I told him that and all he did was reiterate that if he were to get a transplant, if he were to start drinking again, there would have to be consequences. I assured both he and mom that I would help make this happen in different and unconventional ways. Then the time came about the rehab and psychotherapy question. My sister and mom agreed he would comply and then he turned to ask my opinion. I said, "When the Liver Team was here, at first I said no because going through rehab and psychotherapy by yourself to face these unthinkable demons would be really difficult for anyone, but especially him because he is so sensitive and has no real coping mechanisms. But after thinking about it, and feeling like I was in a sense sentencing my dad to death by saying no, I learned more information that changed my mind. He had signed every medical/legal paper saying he wanted to be kept alive. You wouldn't want that to waste away and suffer, you want a chance to change and make things better and he was making strides until this unfortunate event." Then the Social Worker asked me, and me alone to diagnose my father. I replied, PTSD and depression. It is that simple.
I went home sobbing to my husband telling him that for once I think I did something right. I think I was able to rectify my wrong, cure my guilt, and give my daddy a fair shot at a liver transplant for a second chance.
So after meeting with the Social Worker we had to wait on the medical investigation from daddy's primary care physician, because if he was told to stop drinking your liver numbers are bad, transplant would be out of the question. So we waited another day and then the Liver Team came back and I introduced my sister to them and grabbed my mom from the waiting room who was taking a call. The Liver Team told us his liver numbers were never bad enough for his doctor to have a conversation with him about his drinking and after collecting the data from the Social Worker they would just need Daddy to become more lucid to consent to rehab and psychotherapy and he would be #1 on the list for a transplant. There was a definite air of relief in the room knowing he never lied to us and this was just an acute and horrible random occurrence.
So the nurses took him off any medication that would knock him out so we could try and get him to wake up and consent.
Now we are at the week of Christmas. My husband has now joined us and is relieved that he can be with daddy. It took days for those sleepy pain medications to make their way out of his system, but we were there every day talking and trying to get him to open his eyes.
Christmas Eve rolled around and I insisted that my husband spend it with his family. Cuban Christmas Eve is such a big celebration I would have hated him to miss out on it, and so would daddy because he loved it too. So my sister, mom, and I went back to UIC Hospital and dad's eyes were open. His brain however was clouded with the toxins from his kidneys and liver but it was a step in the right direction. Just to see him with his eyes open gave us such good hope.
Christmas Day rolls around and there's my daddy. He is shaking his head yes and no to questions we ask him. He still couldn't talk because of the breathing tube but he was responding. It was one of those great days where you felt like we are going to make it and get out of this on top. My mom and sister wanted to leave and make the preparations for Christmas Dinner at my mom's house but I could not leave my daddy. I told them I am staying as long as I can with him and my husband and I will meet you at the house. They agreed because they all knew how painful and stressful this whole ordeal was.
We had a private moment just him and me where I said everything I needed to say. First I told him I forgive him for everything he ever thought he did wrong by us but most importantly I wanted him to forgive himself. He nodded yes. Then I said that I still need my daddy more than anything and that I love him and that I hope he felt the same. He nodded yes. Lastly, I told him that I loved him unconditionally, which meant no matter what I will always love you. Unconditionally love you. I asked if he understood and with tears in his eyes, he nodded yes.
My husband wanted to lighten the air in the room and told him that soon he would be out of this place and would be giving peanut butter to our Lucy baby (our Doberman). Dad shook his head no. It's as if he knew he wouldn't. I wouldn't let him end on a no nod so I kept saying how much I loved him unconditionally, which he would nod yes to. His nurse came in and called daddy the hospital's Christmas Miracle, if only she knew that he was an every day miracle to us. Right before we left for the night, we wished him a Merry Christmas and he nodded yes and then we said how much we love him unconditionally, and he nodded yes. Little did I know, this was the last genuine "conversation" I would ever have with my dad.
The next day, things had gone from Christmas Miracle, to worse. every vital number was going down and not showing any improvement and on top of it his blood pressure was low. The toxins were over taking his body. The nurses tried draining fluid from his abdomen again and dialysis but he was still in bad shape.
December 27th, a day that feels like everything moved in slow motion and sped up at the same time. My sister and mom were already at the hospital when my husband and I arrived. There was a Pathologist and the main doctor we had been working with and my sister and mom were already in tears. The time had come and the decision had to be made to take daddy off of life support and put him in comfort care until he passes. I was floored and questioned everyone how we could save him and they said they have tried everything but his body is just not strong enough. My mom looked at me and told me she had to make this decision once before and that I needed to trust her no matter how hard it was. I didn't want to give up on daddy and there is still a part of me that wishes we didn't. My mom called her two brothers and my daddy's best friend to say their good-byes before anything was done to make sure they had their moment with daddy.
One thing was for sure, daddy was surrounded by the people who loved and cared for him the most before he was taken off of life support.
A week before that, you and I had a conversation about how I was worried about your health since you decided to go off your blood pressure medication cold turkey without consulting a doctor. You had told me you would talk to a medical professional about my concerns and knew I was coming from a loving and caring place. Though I was shocked and somewhat angry that you could do something so reckless and dangerous without knowing the consequences, I was at least happy you listened to me and understood why I could be so worried; after all, you are my daddy.
When December 12th came, it was more than a mere doctors visit. Your doctor, who has known you for at least 15 years, told you to go straight to the hospital. He wanted some tests done and you were definitely showing signs of jaundice. You were admitted to the hospital right away and signed all the papers you needed to in case things went south and medical measures had to be taken. You wanted to live. You wanted to be resuscitated. You were 100% lucid and awake, talking and complaining about being in the hospital which was so you daddy.
Of course I was busy with work so I went by my mom's word of mouth. I was busy planning our all company holiday party for the 13th and I wouldn't be able to see my dad until the 14th. I wish I dropped everything and went to the hospital that day because my mom made it sound like this was going to be in and out testing and nothing more, but little did I know, that would be the last day my dad could have ever talked to me or even hugged me.
December 13th came and mom told me that his blood pressure was actually good but he was retaining fluid in his abdomen now and would need to run tests on his liver and kidneys. When my husband got home, I just about broke down in the strongest way I could and we talked. I do not have a medical degree but I do have a Masters in Social Work so I am aware of some diseases brought on by addiction or other environmental factors. I told my husband, with my dad's symptoms there could be no way we weren't looking at the worst case scenario - cirrhosis. That would mean complete liver disease and failure so much so that there are only two ways to cure it - transplant or die.
December 14th came and I was finally able to see my daddy. He was knocked out from pain medication since they needed to drain fluid and attach more IVs, etc. He could talk if he wanted to, but he was so out of it, I am sure he wouldn't even know how to work his vocal chords or his mouth for that matter. Daddy was trying to pull every chord out of his body, so my husband, mom, and I felt like we were wrangling a cat in some ways. (I know he would appreciate that analogy.) Nothing could prepare me for just how yellow his skin was because I have never seen someone with jaundice and here I was looking at my daddy who could match a Crayola crayon. Then a doctor walks in and says that they have applied for a transfer to UIC hospital in case they had discovered his tests proved he would need a transplant, UIC would be the best place to get one.
So later on it was confirmed that my dad did have cirrhosis and we were looking at the worst case scenario. In the middle of the night on December 15th, daddy was transferred to UIC hospital's MICU where he was placed on medication that kept him asleep to not feel pain. By the time he arrived at UIC hospital, he was even more jaundice and yellow than before.
My husband had to work the week of the 16th-20th so his stomach was in knots since he would have to hear about my day and what was going on with my dad's condition. Every day that week we had to deal with more and more difficult circumstances. The first was talking with the Liver Team having them as both mom and I questions about his previous health, habits, and conditions if he were to get a transplant. We asked that they contact his primary care physician to get the liver information because even if there was something wrong he would have never told us. We did say he was an alcoholic; alcohol was a coping mechanism for the abuse and hardships he endured as a child, young adult, and even adult. Lastly they asked about conditions for getting the transplant. They had asked if he would comply to rehab and psychotherapy. My mom said yes and I said no. At the time I truly believed it and I explained why. I told the Liver Team that going through rehab alone and therapy alone would be so harmful for him and hurt him that I don't think he could be successful. He would need someone with him who has empathy and could hold his hand. Now I did admit I was conflicted because I wanted my daddy to get a second chance and live, but I knew he was facing some very harsh demons which got him here in the first place. So the Liver Team left and mom and I stayed until visiting hours were over.
I sat in the car silent. I didn't know what to say. And then the tears poured out and I couldn't hide my guilt any longer. I looked at my mom and balling my eyes out said that I was so sorry for what I said to the Liver Team and I really want to take it all back. I told her I felt like I alone condemned daddy to death because I wasn't as optimistic as she was. Of course mom reassured me (as well as my sister on the phone that night) that my opinion wouldn't be the only thing considered when it came to a transplant. But I still felt guilty and I really did feel like I condemned an innocent man to death.
The next day, tests were showing no improvement on the liver and now his kidneys were failing. He was getting put on dialysis and intubated for life support. I pulled my mom aside and told her I would never want to overbear her with decisions, but I feel like we should call my sister (who lives in Florida) and have her take FMLA for a few weeks and fly her in because she should be here. My mom said that's what I was here for to make those tough calls. So I went into the hallway, while mom stayed with my dad, and I placed a call that I was scared to make but knew I had to. So I called her and told her to tell her boss to get that paperwork ready that day because I was going to get her on a flight the following morning. Mom and I got her on a flight on United and had her returning on January 6th, which we could always change if need be.
So my sister comes in and I told her that I was not prepared for the sight that I saw so I would walk in with her and if she felt uncomfortable, we could walk out of the room for a while and then come back. My sister was fine but I could tell it was difficult especially seeing him hooked up to so many machines.
Then the Transplant Social Worker comes in and I am actually happy to see him figuring a) we could probably do some really good social work communication together and b) maybe I could rectify my guilt. So he really got a lot of information but definitely hurt my mom's feelings making her thing she had done something wrong by not throwing daddy out of the house for his drinking or other consequences. My mom couldn't do that to my daddy. He had been given up on and abandoned by everyone that was supposed to love him and my mom was not going to fall into that pattern. So I told him that and all he did was reiterate that if he were to get a transplant, if he were to start drinking again, there would have to be consequences. I assured both he and mom that I would help make this happen in different and unconventional ways. Then the time came about the rehab and psychotherapy question. My sister and mom agreed he would comply and then he turned to ask my opinion. I said, "When the Liver Team was here, at first I said no because going through rehab and psychotherapy by yourself to face these unthinkable demons would be really difficult for anyone, but especially him because he is so sensitive and has no real coping mechanisms. But after thinking about it, and feeling like I was in a sense sentencing my dad to death by saying no, I learned more information that changed my mind. He had signed every medical/legal paper saying he wanted to be kept alive. You wouldn't want that to waste away and suffer, you want a chance to change and make things better and he was making strides until this unfortunate event." Then the Social Worker asked me, and me alone to diagnose my father. I replied, PTSD and depression. It is that simple.
I went home sobbing to my husband telling him that for once I think I did something right. I think I was able to rectify my wrong, cure my guilt, and give my daddy a fair shot at a liver transplant for a second chance.
So after meeting with the Social Worker we had to wait on the medical investigation from daddy's primary care physician, because if he was told to stop drinking your liver numbers are bad, transplant would be out of the question. So we waited another day and then the Liver Team came back and I introduced my sister to them and grabbed my mom from the waiting room who was taking a call. The Liver Team told us his liver numbers were never bad enough for his doctor to have a conversation with him about his drinking and after collecting the data from the Social Worker they would just need Daddy to become more lucid to consent to rehab and psychotherapy and he would be #1 on the list for a transplant. There was a definite air of relief in the room knowing he never lied to us and this was just an acute and horrible random occurrence.
So the nurses took him off any medication that would knock him out so we could try and get him to wake up and consent.
Now we are at the week of Christmas. My husband has now joined us and is relieved that he can be with daddy. It took days for those sleepy pain medications to make their way out of his system, but we were there every day talking and trying to get him to open his eyes.
Christmas Eve rolled around and I insisted that my husband spend it with his family. Cuban Christmas Eve is such a big celebration I would have hated him to miss out on it, and so would daddy because he loved it too. So my sister, mom, and I went back to UIC Hospital and dad's eyes were open. His brain however was clouded with the toxins from his kidneys and liver but it was a step in the right direction. Just to see him with his eyes open gave us such good hope.
Christmas Day rolls around and there's my daddy. He is shaking his head yes and no to questions we ask him. He still couldn't talk because of the breathing tube but he was responding. It was one of those great days where you felt like we are going to make it and get out of this on top. My mom and sister wanted to leave and make the preparations for Christmas Dinner at my mom's house but I could not leave my daddy. I told them I am staying as long as I can with him and my husband and I will meet you at the house. They agreed because they all knew how painful and stressful this whole ordeal was.
We had a private moment just him and me where I said everything I needed to say. First I told him I forgive him for everything he ever thought he did wrong by us but most importantly I wanted him to forgive himself. He nodded yes. Then I said that I still need my daddy more than anything and that I love him and that I hope he felt the same. He nodded yes. Lastly, I told him that I loved him unconditionally, which meant no matter what I will always love you. Unconditionally love you. I asked if he understood and with tears in his eyes, he nodded yes.
My husband wanted to lighten the air in the room and told him that soon he would be out of this place and would be giving peanut butter to our Lucy baby (our Doberman). Dad shook his head no. It's as if he knew he wouldn't. I wouldn't let him end on a no nod so I kept saying how much I loved him unconditionally, which he would nod yes to. His nurse came in and called daddy the hospital's Christmas Miracle, if only she knew that he was an every day miracle to us. Right before we left for the night, we wished him a Merry Christmas and he nodded yes and then we said how much we love him unconditionally, and he nodded yes. Little did I know, this was the last genuine "conversation" I would ever have with my dad.
The next day, things had gone from Christmas Miracle, to worse. every vital number was going down and not showing any improvement and on top of it his blood pressure was low. The toxins were over taking his body. The nurses tried draining fluid from his abdomen again and dialysis but he was still in bad shape.
December 27th, a day that feels like everything moved in slow motion and sped up at the same time. My sister and mom were already at the hospital when my husband and I arrived. There was a Pathologist and the main doctor we had been working with and my sister and mom were already in tears. The time had come and the decision had to be made to take daddy off of life support and put him in comfort care until he passes. I was floored and questioned everyone how we could save him and they said they have tried everything but his body is just not strong enough. My mom looked at me and told me she had to make this decision once before and that I needed to trust her no matter how hard it was. I didn't want to give up on daddy and there is still a part of me that wishes we didn't. My mom called her two brothers and my daddy's best friend to say their good-byes before anything was done to make sure they had their moment with daddy.
One thing was for sure, daddy was surrounded by the people who loved and cared for him the most before he was taken off of life support.
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