Guest Blog by Jennifer’s Dad
Libby asked me to write something from my perspective. My wife is an amazing writer so I ask you to cut me a little slack 🙂
I guess I will start from the beginning…Libby and I met at a friends wedding about 16 years ago. She was in the wedding and I came up from San Diego to attend. Turned out we had some of the same friends all through out high school, but I had never met her (we always say if we knew each other then, we would not be here together now). We would talk every once in a while when I would call up to the “hangout house” and she would be there and we would grab a drink when I would be in town, but we were just friends.
I moved back up to the bay in 2002 and met for a drink on St. Patty’s day with a couple of friends. From there it was pretty much history. 2 and a half years later and we were married. I actually kept her guessing a little along the way. About 2 months before I asked her to marry me I got her name tattooed on me…thank goodness that worked out!
About a week after we got home from the honeymoon I was informed that we had been trying to have a baby and we are having trouble….wait, what? You see Libby made it very clear at the beginning of our relationship that she wanted to be a wife and a mom and I was good with that. I just had no idea how quickly after becoming a wife she wanted to become a mom. For some reason, Lib had a hunch that there may be a hard road ahead in becoming pregnant. Unfortunately, she was correct. For the next couple years we had multiple miscarriages and had 5 IVF’s . I gave her shots and held her up when she was down.
This is an extremely hard road on a woman, but men do not talk about it much. I felt useless. I wanted to fix it so badly (that is what I do, I fix stuff, I find solutions to problems). There would be times where I would find myself slipping back into the bottle it was so overwhelming, but luckily I always found my way out. I was also very lucky to have a very supportive company. Not all companies would be as flexible. Only a few people around us knew of the struggles we went through.
There was a reason for all of it though…this is the road that led us to our Jennifer. The minute I saw her I felt this overwhelming light inside come alive.
Jennifer had me wrapped around her little finger the moment I saw her. I was the first one to change her diaper…I was nervous, but for some reason it was ok. The nurse put her 2 little footprints on the shirt I was wearing and I have it here in the living room. It breaks my heart sometimes to look at it…
I had a coworker tell me that when I talked about Jennifer that I would have this sparkle in my eye. I have always felt that proud feeling when I talked about her, but I had no idea that people could feel/see it in me. She was my princess…daddy’s little girl and she knew it.
Libby had talked about the bond that Jennifer had with her siblings so I will skip to the bond she had with Lib. Before diagnosis, she was a true daddy’s girl as I said before. Libby and her would have their “teenage” quarrels, but when it came right down to it, Libby was the one she went to when she got hurt. If she was scared, tired, cranky, got her feelings hurt, it was straight to mom (as it should be). Libby is the rock of the family. My job is to help support that rock so it does not crumble or roll away. I feel like I am rambling…
Let’s move on to October 2013. I am at a work training and am in Oakland for a couple of days. During this time, Libby had an appointment with and eye doc for Jennifer due to the eye starting to turn in. I received a call from Lib in the middle of the training and I sent to VM. Then I got a call from customer service at work…then I get a call from my boss and at that point I step out and answer. “Have you talked to your wife?” Turned out my little Nicholas shot a cool new jet plane toy into Lib’s eye, but she was ok. Just wanted to warn me they were in the ER. The next day I get a call and I am told that Jennifer had Sixth nerve Palsy. It could also be a tumor, but we will have a scan done next week.
“Should I come home?” Lib said no, but I got very scared. To be honest, I don’t know if I was really there the rest of the training and I was thinking that I just wanted to go be with them.
Thursday night I get home and I could tell Lib was scared. Her eye had already changed so much just in the couple days I had been gone. I went to work the next day and it was a really bad day. I needed to go to San Jose, on my way, I get a call from Lib and she said we are going to Stanford and to meet her there. WTF! My mind is racing and I just want to see my little girl and ease her (and Lib’s) mind. I want to comfort them and then hear that she is fine and that we will check her out more next week.
I got what I wanted; the first person that saw her gave me the answer I was waiting to hear. Everything looks ok go home. Luckily Libby does not accept the first response and always digs deeper, so she was admitted. She is very good at this and always has been. Everyone knows what happens next so I will skip to the treatment portion.
During Jennifer’s treatment, Libby, Charlotte and Jennifer all lived up in Palo Alto and the boys and I lived with Libby’s parents in Gilroy. While this brought the boys and I closer together, I have never gone through something so difficult in my life (until she went on hospice). I would work during the day and the boys would be with the in-laws. I would make it home for dinner most nights and I would put them to bed. I would then talk with Lib for a short time and then attempt to go to sleep. At about midnight or so, I would crash out and wake up at 2-4am to read what really happened during the day with my wife and 2 daughters. When Lib and I talked during the week, it was like she was in a fog and I just got the cliff notes from the day. I did not blame her, she was exhausted and trying to keep everything straight in her head for the blogging at night.
I understood, but it was difficult, until it became easy. It was easier reading about it and going through my own emotions in private without having to be strong for her so it worked…for a while.
I would try and visit them once a week and have dinner with them and then on Fridays they would come home and we would struggle to be a family over the weekend. By Sunday Lib and I had it figured out and then she hauled the girls back up to Stanford for the week. As if this situation was not stressful enough, we found ourselves fighting the first half of the weekend because I ran things one way during the week and so did she. Hard for me because I am stubborn and instead of letting go and giving her the reigns she had been holding with the kids, I thought I would show her that I could handle both like I do during the week.
Looking back, you can see things so clearly, but when you are in the thick of it, you can be blind. My poor wife is living the medical nightmare of our daughter going through radiation and I want to have a power struggle with her when she gets home…idiot. I think a little more than half way through I finally figured it out and took a step back.
I will say this, if I could have done it over, I would have taken way more time off than I did and I will for the rest of my life have to live with that regret. I did not get enough time with her and I am pissed off about it. I figured I had more time and that I could not really help during the radiation part of it. Bullshit. I did not need to help, I just needed to be there with my daughter. She was scared and changing so much and I missed that time. I think that it was a very special time for Libby, Jennifer and Charlotte and they all got so close and that is good…but I am very jealous. By the same token, I got very close with the boys and I know that it was good for them and I but still I wish I had spent more time with her.
We had a good time at her surprise Disneyland trip and make a wish trip to Disneyworld, but unfortunately the things that are stuck in my head are the times she threw up and the fact that I had to carry my 6 year old daughter because she could not stand for an extended period of time. That I had to hold her shoe on when I carried her because she did not have the muscle strength to keep her foot straight. That we got special treatment because my daughter was dying…I remember the temper tantrums because that stupid fucking tumor messed with her head.
I do remember some of the good like the way she looked at me when I would be goofy or the way she laughed with every ounce of her being. The way I felt when she would say the favorite parts of her day were the teacups and the Mator ride.
When we got back from the make a wish trip I had decided that I would go 1wk on and 1 wk off at work. That never happened…The week I was supposed to go back was the week she went on hospice care and we were told 2-3 months. Libby said maybe a month at most and she was unfortunately correct.
Watching your child slowly die is probably one of the worst things a person can go though. This cancer took her sight, then it took her ability to walk, then it took her ability to eat or drink, then it took her ability to speak, then being able to swallow liquid meds, then incontinence, gave her seizures and then took her last breath. I don’t understand how we live with ourselves while this beast is out there killing our kids!
I’m not the political one in the family, but the statistics my wife tells me about make me sick to my stomach. I am just glad my wife is as outspoken as she is and had the determination to make a difference. I am proud to support her in this journey and help anyway that I can.
The final days, I knew it was coming soon. The seizures started and I was afraid to move her, but I wanted to give her a little change in her day so I took her to the dance room to lay on the “snuggle couch”. In the evening we decided that we should bring her back to her room. I thought it had been long enough since her last meds that she would not throw up or dry heave. I was wrong and then what happened next I will never ever forget.
She had a seizure while in my arms as I was trying to hold the barf bag up to her mouth. Her arm went straight out and seam to twist entirely around. I still think I caused it somehow and I can’t shake it (I try not to think about this part, every time I do I completely lose it).
At that point she never came back. She was stiff as a board and seems to have lock jaw with her mouth wide open. Libby never left her side after that. The last day I had a hard time being in the same room with her. It was overwhelming and I think my mind just could not handle it anymore. Libby was basically holding her the entire day and night.
For the next few weeks I think I was numb (there I some days where I think I still am). I thought I was doing great, taking care of the affairs and my family. I think this happened for a reason. Luckily, Libby and I seem to have our weak moments at different times, which allow the other to be the rock and take care of business.
My company was very understanding and supportive. I took the next 2 months off and then went back to work 3 days a week. This is actually my first week back full time…feels kind of weird. It also feels like a life time since she died, but it was only 4 months ago next week…
The month anniversaries are not hard on me like they are Lib. I think the year mark might be hard, but what really gets me is the holidays and events. She was supposed to graduate kindergarten and I was supposed to surprise her with something special this past Wednesday and instead I was working and comforting my wife who was overwhelmed with emotion. I could not attend the graduation like my wife. Not that my work would not let me (they would) it was because that would be way too difficult for me to handle in public.
Since the numbness started to wear off I have to take some time every week to deal with the death. I force myself into this space that I hate. It leaks out a bit around the family but for the most part I need everyone to leave the house and I then deal with my emotions. I just have a very hard time doing it around other people. The problem is that if I don’t deal with it, then I start to get very annoyed with people. Family, friends, coworkers, and complete strangers; I am almost looking for people to say the wrong thing to me, looking for a fight. I also have visions of just driving away to some other state where no one knows me and I can leave this craziness behind. I love my wife, but thank goodness we have other children. I am a weird one, I want to fight and flight at the same time. I am also confident in our marriage so I can say this kind of stuff without her freaking out!
If there is one thing I can say to describe what the father is going through is that the man may look strong, but he is forever broken inside. This is not to say that I don’t love my other kids as much as Jennifer or that they do not bring me happiness and joy, because they do and I love them to pieces, it is that there is a giant hole that will never be filled no matter what else happens in life.