Reflections

Over the past few weeks, I have received a few compliments about my losing weight. Things like, "You look great" and "I am so glad you're doing better."

The last one made me think a lot. Am I doing better after losing Joana? Why is my outside not reflecting the deep pain I am feeling? Am I "betraying" Joana by taking care of my body and looking like I am doing great?

Then I thought back to February when I was in the hospital and had major surgery, and my body looked anything but great. It was okay for me to look awful, because my body was going through some rough stuff. My outside for once matched my inside. It was okay to burst into tears at the most random times and it was okay to not smile and act like everything was okay.

But since then I have come to realize that I have to take care of my body better, and I have done a pretty good job. Exercising, eating healthy (for the most part), trying to get enough sleep...which all resulted in the above mentioned compliments. While it is nice to hear compliments, a part of me feels like screaming, "But I still miss Joana just as much! Nothing has changed, my daughter is still gone!" Am I just overly sensitive and maybe others don't even connect those two? When I hear "You look great," do they not mean, "You look like you don't miss Joana as much any more?" Do they truly just mean that they can tell I have lost weight? Am I reading too much into everything?

Well, now I am back to being in the hospital, probably looking awful since I haven't taken a shower, am on pain meds, and don't feel the greatest. Yes, my outside matches my inside.....but I want nothing more than to go home and go back to taking care of my body! My treadmill is waiting for me, my new blender is ready to make some awesome smoothies, and my bed would like me to sleep in it again....

An innocent compliment....

"I don't know how you do it. If my daughter died, there is no way I could keep on going like you do."

A very innocent sentence which was probably meant as a compliment, but it stirred oh-so-many emotions in me.

First of all, I don't have a choice. I would have never chosen to lose my daughter. Never. Yet, my daughter died, and I was left behind. She was robbed of many, many years of living, and I feel like I have to live my life to honor her and preserve her memory. Is it easy? No, absolutely not. Would I change things if I could? Absolutely.

Second of all, if you tell someone who lost a loved one that you couldn't go on if you lost a loved one, it implies that you love your person more than the bereaved person loved his/her loved one, and that implication stings. A lot. If you couldn't go on if your daughter died, but I did and do every single day, that must mean that I didn't love my daughter as much as you love your daughter. This might be totally irrational and make no sense to you at all...I am just writing down how I felt in this particular situation today.

I know it's hard to talk to a bereaved parent because - let's face it - we are always on edge, take everything personal, have terrible mood swings, and never know how we will react in a given circumstance. What was okay one day might not be okay the next, and what was not bearable today might be okay tomorrow. But one thing never changes....we miss our children with every fiber of our being, with every breath we take and on each and every day we are alive.

Giving up is not an option. My daughter never did....so what would give me the right to? I will continue to honor Joana and share her beautiful spirit with everyone who is willing to listen!

October 3

October 3...such a tough day.

Two years ago, October 3 was the last full day I had with Joana. The last day on which the sun set while Joana was still alive. The last day I was able to hug and hold her as much as I wanted. The last day I could tell her how much I love her from morning to night.

On that day I took some pictures of the two of us, and those are some of the most treasured photos I ever took. I want to share them and show the world how very brave my daughter was, how beautiful she was up to the very end. I have often thought about showing others....but then I get scared. On the one hand I would love to share them, but on the other hand I want others to remember Joana the way she was before her brain tumor took over. To me, Joana was always beautiful, from her first breath to her last, inside and out.

Two years without holding her, without hearing her voice, without seeing the love for life in her eyes and hearing her excitement when she talks about college and her plans for the future. Two years of missing her, and just when I think I can't possibly miss her any more, something happens and my heart hurts all over and just a little more than before.

I journaled on CaringBridge about Joana's last week, and I am going to cut and paste it here - not because I want sympathy, but because I want others to understand what it was like, and why it is so very important to find a cure for cancer. Cancer took so much from us, and more importantly, it robbed Joana of an amazing life that I am sure she would have had. She was determined to make a difference in the world, and I know that she would have.

October 4....9 days after her birthday and 9 days before her boyfriend's birthday. Right in the middle and very Joana like. I miss her so much....

Joana's last week (as recorded on CaringBridge)

On Saturday, September 28th, 2013, we celebrated Joana’s 21st birthday. We knew for a fact that it would be Joana’s last birthday with us, and we also knew that she really didn’t understand any more what was going on. But we wanted to celebrate her special day (even though it was 3 days late) with all of her friends and give her friends a chance to say good bye to her.

In the morning, our hospice aide Deanna came over to get Joana ready. She washed her hair, cleaned her up, dressed her nicely, and then let her rest a couple of hours before her party.

We had arranged to meet everyone at a café where we had a room to ourselves. When it was time to get Joana up, she had no idea why she was supposed to get out of bed and therefore didn’t cooperate very much. I tried for more than half an hour, but Joana was still in bed when my friend Laura called and asked if we needed help. She came over, and we were finally able to get Joana up and into her wheelchair and then into the van. After a very short drive, we were greeted by many of Joana’s friends at the café. Joana seemed to enjoy herself while we were there, but as soon as we were in the car to go back home, she had already forgotten where we had been. She never opened any of her presents, and to this day they remain unopened in her bedroom.

The days after her party are a blur to me. Joana was still awake here and there, but she spent most of her days sleeping. She didn’t eat much at all, and we could only get her to drink a few sips occasionally. Hospice assured us that this was normal, and since her body was starting to shut down, it would actually harm her if she was force fed. By Wednesday, October 2, we knew that Joana didn’t have more than a week left and we called her closest friends and of course Adam, her boyfriend, who came to Saginaw right away.

Joana slept almost all the time, and when she tried to talk, we couldn’t make out what she was saying. Her words were slurred and her voice was very quiet. On that Wednesday, after not speaking coherently for a few days, she opened her eyes and said clear as can be, “Wow, that just sounded like Guy.” She sounded very surprised, but as soon as she said it, she closed her eyes again and drifted off. That was the last thing I heard her say that I could understand. There is a huge significance to those last words which I would like to explain. Guy was Joana’s friend who had passed away from a brain tumor a few years ago. When Joana was diagnosed, Guy was there for her and explained how he made it through. When Joana was nervous about radiation, Guy would say, “I made it through just fine, Joana, and so will you.” Unfortunately, Guy’s tumor returned with a vengeance and took Guy’s life in a few short months after recurrence. I remember going to the funeral home with Joana, thinking, “This could happen to us.” There were so many similarities between Joana and Guy, and, unfortunately, both of their young lives were cut short. So you see, for Joana to talk about hearing Guy when she physically wasn’t able to speak clearly any more is more than amazing…

Later that morning was the last time Joana got out of bed. She sat in her wheelchair for a few minutes and sipped on some juice, and I took a few pictures of the two of us. Someday I might share these pictures, but not yet. They are very special to me, but they show just how sick Joana really was, even though she smiled and in one picture gave me a “thumbs up”.

On Thursday, Joana slept pretty much all day. She didn’t eat or drink any more, and wasn’t really responsive. I had wonderful friends stay at our house who took care of all the logistics so I could spend all my time by Joana’s side. They made sure there was food in the house, that the phone was answered, that there weren’t too many visitors at any one time, and the list goes on and on! I will be forever grateful that they were here and didn’t run when things got tough!

Thursday night, Adam stayed at our house and slept in the basement while I slept next to Joana. I had to push her morphine pump numerous times for additional doses (she received continuous morphine around the clock, but we were able to give her extra if she needed it) since she was in so much pain, and we had to call the hospice nurse twice during the night to come to the house because once the pump ran out of medicine and once because Joana’s heart rate was extremely high.

Friday morning started “normal.” Our hospice nurse, Elizabeth, came to evaluate Joana and to give her her meds through her picc line.  I showed her two Youtube videos of Joana (her speech at Relay For Life and the video for her youth group) because it was very important to me that she got to know Joana and hear her voice. Afterwards she examined Joana and then she took me in the dining room to tell me that she saw signs that Joana would pass away soon, probably over the weekend. I asked her if we should take Joana to the hospital, but Elizabeth said that Joana wouldn’t survive being transported in an ambulance. She then left to see another patient and told us she would be back in the afternoon to check on Joana.

Adam went home for a little bit to take a shower and get clean clothes. He was undecided if he should go, but I encouraged him because I thought once he came back, he would stay till Joana’s death and I thought it would be good for him to take a little break. I remember saying, “Nothing will happen in the next hour or the hospice nurse wouldn’t have left. It’ll be fine if you go home for a bit.”
Chris and I sat on the couch next to Joana's hospital bed and discussed if we should take David and Anya to their grandparent’s house for the weekend, or if it would be better for them if they stayed home. We never came to a conclusion, and Chris decided to take a quick shower while the hospice aide gave Joana a sponge bath. Deanna just started showing me how I would have to start turning Joana so she wouldn’t get bedsores when we noticed a change in Joana’s breathing. I remember looking at Deanna and she gave me a nod, confirming that the time had come…much quicker than any of us could have imagined. My friend Laura rushed to get Chris, and I held Joana, stroked her hair and her face, kissed her, and repeated over and over how much I loved her and that it was okay for her to stop fighting. She stopped breathing multiple times, but every time I thought she had passed away, she would gasp for air again. This seemed to last forever, but I believe it was only 10 or 15 minutes. At 11:48 a.m. on Friday, October 4, 2013, Joana took her very last breath. She never seemed scared.

I held her for a while longer, then I went to tell Tim, who had still been sleeping at the time. We decided to leave David and Anya in school till normal dismissal time so we could have some more time with Joana. Someone (not really sure who) called the funeral home but told them that we were not ready for them yet. Elizabeth came back and unhooked Joana from her picc line. Then I spent a few hours with Joana before Chris picked up the kids from school. We wanted to give them the opportunity to see Joana, if they wanted to. After they were home for a little bit, someone called the funeral home and told them they could come to pick up Joana.

There is so much more, but this gives you a glimpse of what happened during Joana’s last days.

I miss her so much, and most days it still feels so unreal. She was such an amazing young woman, and I will never forget the grace and courage she displayed during her five year battle.

She will forever live in my heart.