A Year Ago…

February 18th, 2014 was a day that made its mark on the Hooper household. We found out Scott had a tumor and that it was likely cancerous. Our lives turned upside-down in an instant. I wrote about that eventful day here.

The average time someone with Glioblastoma lives for is 15 months. Just 15 months. Can you believe that? Scott did not quite make it to 12 months. We were told that because of his age and how well he responded to treatment, he might be one of the lucky few people who lives years and not months. Sadly, this was not the case.

I’ll tell you, though. So much can happen in one year. Our lives can pass us in the blink of an eye. Our children grow up too quickly. Before we know it, you’re old and surrounded by grandchildren. But really, stop and think, how much can you fit into 365 days? One year of your life. 525,600 minutes gone by.

When you find out that your timeline is much more finite than you had originally expected, what would you do?

I’ll tell you what Scott did. First off, it is not the glamorous, take life by the reins and live life to its absolute fullest. At least not necessarily for Scott. He had a disability to overcome. A disability which meant over 40 days living in the hospital doing therapy and learning how to adjust his life in accordance with his abilities. It meant loneliness for him as I could not be there every minute of every day. My life was consumed with taking care of children and finding us a home. It meant sadness and depression. He eventually was no longer in denial and he had to come face-to-face with brain cancer and a disability. He had to come to terms that he would be dependent upon me, his mother, and others around him. He might never get to work again. He felt useless. Helpless. Hopeless.

I can’t speak from personal experience, but I can speak from observation. When someone learns that he or she is going to die, they appear to go through the stages of grief. Grief over the life they once had and grief for the life they will miss when they are gone. Scott went through many of those stages, while in the hospital and after he came home.

We talked about legacies he could leave behind for the kids. Video recordings for each one of them that he could create. But just talking about it would leave him sobbing. The thought of his babies growing up without him in their lives tore at his being. It is something no one ever really thinks about. Eventually, though, he was resolved to having more pictures of him, especially with the kids. Eventually, though, he came to the realization that he needs to enjoy life and to create wonderful memories with me and the children. And we did just that. We did so many things with him and created so many wonderful memories. And while I think we still could have done so much more, I can say that without a doubt, we had fun and we did make the most of what time he did have left.

“Man walks down the street in that hat, people know he's not afraid of anything.” – Wash, Firefly

A busy week…

This week has been crazy and hectic. The van had been in the shop for a while and I got it back last Friday. But it immediately gave me issues, unrelated to why it was in the shop. So, this week it is back in the shop on a recall related issue, but it may be a month or more before they can get the part.

One the kids fell at school, spraining her ankle. And I spent three hours at the Social Security office one day and another 30 minutes the next day. So many little issues that I wish I didn’t have to deal with right now. Of course, that isn’t how life works.

But I do have many positives. So, last month, Melayna and Tristan started karate with Tristan’s friend, Malcolm. This week, Tristan got his first stripe.

I went with Melayna and Tristan to Family Writing Night at their school. They had a “photo booth” station with all sorts of funny props.

 

I got to see a bunch of Scott’s childhood pictures and realize just how much Melayna looks just like him.

But the best part of my week was hanging out with friends on two separate nights! I was slightly dreading Valentine’s Day. My first holiday without him and it had to be Valentine’s Day. I miss him so much and wish he was here. To hold me. Kiss me. Sweep me off my feet.

So, Friday, the kids were at Karate Parents Night Out and I went out to eat with Ginia, Brian, and their friends at Shugga’s. The food was great. The company was even better!

For Valentine’s Day, I was kind of in a bummed mood most of the day. That is, until, I went out with friend’s whose significant others were okay with me stealing for the night. We had a girls night out and went to see 50 Shades of Grey. Yes, that movie! My favorite moment of the evening was at the end, Dani, who was the only one in the group that did not read the books, loudly said “What the hell!”, after I whispered to her “And that’s it”. Most of the theater was laughing. We were in stitches just laughing so hard. After the movies, we went to Back East Bar & Grill for drinks and food. More embarrassment ensued as they talked about all sorts of things most people don’t talk about in public.

 

Oh, and this was waiting for me when I got home (Dani gave me the chocolates earlier, but Matt, her boyfriend, came by the house and dropped off flowers and the little cuddle bug)

While I wish so badly it was Scott who gave me flowers and chocolates and cuddle bug, I am so thankful for Dani and Matt. And all my friends who took me out tonight.

Painting with a Twist

Scott and I have been to Painting with a Twist several times together and once with the kids. I’ve even gone with a friend as well. Today, I went by myself. It was a benefit event for the Black Forest Animal Sanctuary. It was also a ‘Paint your own Pet’ session, where you submit an animal photo and they prep the canvas for you to do the painting. They create an outline and give you some guidance, but otherwise, it is all up to you. I chose to do my mother-in-law’s dog as a birthday gift to her. Her birthday was last month and I told her that I planned on doing this, so she was getting her gift late.

 

Here’s the outline they did. Below the paper plate are my paints.

They suggested that we start with the eyes and then the nose.

A little darker than what she’s supposed to be, but getting there.

Finally, it is done! I wish I could have spent more time on the background, but otherwise, it

A pain I’ve never felt before

I still can’t believe he’s gone.

The day he died, I woke up to a change in his breathing pattern. Short, rapid, shallow breaths. And the gurgling noise. He was no longer coughing to clear it out. And he wasn’t responding to me.
I remember calling Ginia. I reported the change and she suggested I clear out the excess mucus and use a medication in our emergency kit to reduce secretions in the mouth. I started to clear his mouth out when he instinctively started to cough. The coughing got bad enough to cause him to vomit. All of it was just bile. He hadn’t eaten in five days. Ginia got the on call nurse to head on over and while I was off the phone, Scott puked again. This time projectile vomit all over me and the floor.

After Jane arrived, I started to wake up the younger two kids and take a shower to clean up. I got the younger kids ready to go and my dad and Gloria took them to school. We told the older two what was going on and they opted to stay home. I remember at some point my dad and Gloria taking them out for lunch and to the mall. I remember Jane leaving and Lisa taking over, then Ginia coming over as well. They told us he may have just a few hours left.

I remember talking to him. Holding his hand. Caressing his cheek and hair. I remember kissing him many times.

I found myself playing music for him. “Best Friend” by Tim McGraw. Music from the Lilo & Stitch soundtrack.

I reminisced by browsing through old pictures and watching old videos. Lisa and Ginia listened the videos from the other side of the room.

Hours went by and not much change. A flood of warm wishes, thoughts, prayers, and offers to help filled up in the comment section of my post saying that Scott has taken a turn for the worse.

Eventually, the kids were picked up and home with us. My dad and Gloria went home. The kids kept themselves occupied in the living room.
I received a text from my friend Dani asking if I wanted her to come over. I finally said yes. She came by around 5:00pm. We started to get dinner in the oven when she came. Then we sat in the room just chatting away about Neil deGrasse Tyson and other funny things. Just before 5:30 we noticed there was a change. His breathing slowed considerably. At least half of what it was. We stopped talking and paid close attention to him. After only a few minutes, his chest swelled and he let out a loud sigh. But no breath came in. His head jerked a couple times, his left arm and leg tightened. Then a stillness that caught me off guard. His mother pressed her fingers to his neck. She swears she feels something. But then thinks it could be her own fingers. I put my ear against his chest. Again, the stillness. No breath. No heartbeat. Nothing. He was gone. It was 5:33pm.

I remember Dani behind me, her hands on my shoulders as Scott took his final breaths. I remember feeling pain, but a sense of relief as I know that he is no longer suffering. I am not surprised that Scott waited until my friend Dani came to be there. I think he wanted to be sure I had the support he set up prior to his passing. Scott was really worried about me. He knew that I’d take care of the kids. That they would be fine. Me, on the other hand, he was concerned. I tend to take care of others before I take care of myself. He knew that I am a sensitive person. His caring for me began the day he went into surgery. I was crying. I was worried about him. He looked at our friends, Jenny and Jose, and told them “Make her smile”. He wasn’t worried about going into surgery! He was worried about me. He’s asked Dani to look after me when he was gone. He made her promise. He took his final breaths once he knew she was there for me. Her hands on my shoulder and ready to be there for me.

The rest of the evening was somewhat of a blur. Jenny and Jose came over to say goodbye. Ginia and Jeff came over to mark official time of death and to call the funeral home. We brought the kids in the room to also say goodbye. I remember the older girls crying. I remember Melayna looked at Scott and she started to cry. I picked her up and she began to look away from Scott. She was too overwhelmed. I asked her if she wanted to leave the room and she shook her head yes. I handed her off to Jenny and quickly turned my attention to Tristan. He was looking up at pictures hanging on my wall. Tears held back. I took him in my arms and he wept for a bit. Hayley came to hug us both. Tristan then asked if he could go play on his Kindle and, of course, I let him.

 

I remember at one point wanting to be alone with Scott, but Kate would not leave his side. In fact, she pretty much stayed with him the entire time, only leaving for an appointment earlier in the day and to occasionally take care of her dog. My friend Jenny stole her away from him so I could have some time alone. I didn’t get much time, but enough to talk to him, cry over him, kiss him, touch him. I so desperately wanted him to open his eyes and talk to me. Kiss me back. Squeeze my hand. Anything. But it wouldn’t happen. Not this time. Not ever.

Ginia and Jeff came into the room and both talked to me about dying. Their views on death. Much of it, I found very comforting. While we were talking, though, the funeral home showed up. I departed from my bedroom and went into the kitchen. After a few minutes, they told me I can say one last goodbye. He was covered with only his neck and head exposed. I kissed him. I told him that I love him. And I backed away. I could hear them take him away. I looked out the door as they wheel the stretcher to the van. I held on until he was out of sight.

What happened next was something I did not know I was capable of. I went to our bedroom to see his empty hospital bed. His sheets stained from the vomiting he did early that morning. That did not stop me from collapsing on his bed and curling up while I wailed an awful sound. I cried harder than I had ever cried before. I screamed for him. My chest was on fire, aching for him. Wanting so desperately to bring him back. I remember my dad was there, rubbing my arm, trying to soothe me. I remember him saying that this was a long time coming and that I had been holding it all in for so long. That I had been so strong for everyone. I remember Jenny and Jose behind me. Rubbing my back. I don’t know how long I cried for. How long I rocked myself while laying in his bed. They just let me cry. The let me wail in pain and sorrow.

*************************

Today, I’ve spent five hours today cleaning my garage. Going through things. Letting go of things I no longer need. Reminiscing over things Scott and I shared together. Since Tuesday, I really haven’t spent much time on my own. An hour here or there, but really, my friends all spent time with me in a tag team format. The guys helped with things around the house. Jenny and Dani made sure I had the company I needed to cope with losing Scott. I stayed up late and got little sleep. I cleaned and organized. I kept myself busy.

The kids quickly returned to school. They’d gone through this before. When Scott first went into the hospital, they were out for nearly a week. This time, they returned after only one day off (two for the girls). We told them all that if they are having a bad day, though, to call and Grandpa and Grandma would come get them. I did get a call. But not to come pick one of them up. Tristan asked his teacher if he could call me to tell me that he was having a good day. Just like his daddy, he was more concerned about me then himself. My bubbas, so empathetic. So loving. Definitely a momma’s boy.

I’ve been trying to remain positive and keep up my usual bubbly self. I don’t want something like this to bring me down. Scott wouldn’t have wanted that. I do have my moments of sadness. I could just be numbing myself to the pain by all these distractions. I can say that my friends have definitely helped me to smile and laugh. Again, something Scott would have wanted. I went to Melayna’s hundred day celebration at school yesterday. She was very excited to see me there.

And of course, Ginia goaded me into signing up for the Spartan Race. What have I gotten myself into? I’ve got a lot of work to do. If you’re in Colorado, please consider joining us. We are Team: Hooperpalooza. Our wave time is 1pm on May 2nd at Fort Carson. Click here for details: http://www.spartan.com/

The service has been scheduled. Now there is much to be done. But that’s okay. Things to stay focused on. To keep me busy.

The last sunset

Picture taken by Kevin Ahrens of Kev’s Kaptures
This photo was taken ten minutes after Scott passed away.

Dani Renaud
February 3 at 6:19pm

I'm so sorry to announce that Scott Hooper, beloved husband, father, friend, and son passed away at 5:30pm tonight. You will be so very missed by so many people. I love you. You may have gone but many people will be here to love and support your family through this hard time and for years to come.

Thank you all for your support and love for the Hoopers through this difficult time. They and especially Mary appreciate it more than you know.

The unthinkable

Scott has taken a turn for the worse. We are told it may be hours. I woke up at 5am this morning to a different pace of breathing, very shallow and rapid. He also isn’t responsive; he’s unconscious. This is it. His nurses have been here, switching off all morning. Checking him occasionally and doing their chart work in between. I have a permanent knot in my stomach. I don’t know what to do.

Birthday Video

A week ago we celebrated Scott’s birthday and his life. I hired a videographer to capture this special occasion. Dusty from Cinepro Studios captured the feeling, the emotion, and the love so beautifully. You might want to have a tissue or two handy.