Thursday June 13, 2013 Recovery
Sorry for not writing for a while but surgery and drugs made it hard to pull words together. I left off on Sunday June 2nd with my Mom’s 80th birthday party. It was a great time with a small group at the end for a bond fire. She is amazing how well she is doing at 80. She has had fewer problems in her life than me and she has a few years on me. Oh well, some of us just get the extras sent our way.
On Monday (June 3rd) morning I went to the hospital with Scott and my Mom. They did all the regular check in stuff. The doctor was about an hour behind so we had Richard and Bee come to the hospital and hang out with me until I was sent into surgery. I gave them all a hug and kiss good-bye. Some one or two had asked me if I was afraid and I said no. How could I be afraid after never feeling any fear when sending my daughter in for brain surgery (twice). No fear of surgery for others or me. I guess I just have that trust that I have chosen a good doctor who will do the very best that he or she can do. I also had 3 major surgeries by time I was 13 and several after so I was use to it. I do remember the fear I had with the first surgery (at 6 years old) I was sure to share those feelings with the doctors and nurses when Kathryn had her first surgery. I never wanted her to have that same fear. She did pretty well. The lady (social worker) did notice Kathryn was a bit afraid and got her medicine to relax her. Kathryn had also dressed in red that day so if they got blood on her clothes it would either blend in or be easier for me to get out. Always thinking of others.
My surgery went very well. The anesthesiologist went over all the meds he was going to give me. I told him it sounded like he was going to take real good care of me and he was going to make sure I wasn’t going to get sick. He was giving like three different drugs just to keep me from getting sick. He was a great guy. I think he was kind of blown away with our knowledge of drugs and what they do. Little did he know of whom he was dealing with and our extensive involvement with Kathryn’s care. We were taught well. When I saw the surgeon before surgery we talked about his daughter a little and her graduation. Then I did tell him I had one last thing to say, “ Remember to measure twice and cut once.” I think he was a bit shocked but I also think he felt my humor.
After surgery I felt fine. They really took good care of me. They didn’t get me up right away like I was told they would but I was glad. I was tired and drugged. My first up was to the bathroom. A success! Since my surgery was later in the day on Monday I spent Monday and Tuesday night. I didn’t sleep either night. I kept the TV on and took little snoozes. Because I get itchy with oxycodine they gave me Benadryl too so snoozing was not a problem. At joint camp I did well. She even let me try the cane out. I did fine but a bit wobbly. We both agreed that the walker would be a better choice for the first week or two. I felt like I was treated like a little princess my whole stay. Everyone was super nice and really on top of it.
So I came home on Wednesday and made it up the stairs to sleep in my own bed. Actually the stairs were not a problem at all. Just slow and one step at a time. I have just been doing my exercises and being a good patient so I don’t hurt myself and extend the recovery time.
Over the weekend I had visitors from school. It was nice to see them. My Mom has been down helping nurse Scott take care of me. I told him I could stay by myself but he wasn’t ready to leave me alone. Over the weekend we also watched the long Island Median just by chance we flipped to it on the TV. It was about a Mom who lost her son. He was 19. His story was a bit like Kathryn’s. His cancer was so an old man’s cancer not one found in a 19 year old. Same as Kathryn’s. He also lost his voice towards the end just like Kathryn. And of course they were both so young, he 19 and Kathryn 20. Both died of cancer. I watched as Scott wiped his eyes. It is hard to watch these shows but it is also good. We both feel Kathryn is here with us. We know she is here but we can’t see her, hold her or talk to her. That’s hard but knowing that she is here gives us a sense of peace.
Also received a noticed that Rowan’s parents have returned home. Rebecca wrote her final blog. It was truly beautiful. She writes so well. She shared how “You Are My Sunshine” was one of Rowan’s favorite songs. She loved to sing it. My Dad would sing this song to me. I loved to have him sing to me. Rebecca wrote about her friends and family clearing the house and rearranging the furniture so it wouldn’t be so shocking when they returned. It would be hard to walk in and see Rowan’s things sitting there waiting for her to play. I can understand. I suppose I kind of did some similar things. I got rid of all the medical stuff immediately. The fire department was willing to take things away and I was happy to have them clear the house. We called home health services right away to take everything. We moved it all to the garage immediately to clear the house of the medical equipment. Then we went through Kathryn’s room to put together her service. I was blessed to have so many people to help. It must have been extremely hard on Richard. I know it was hard on Scott and me but my Mom was hit heavy too. I did send Rebecca an email but have not received a return. I know they are hurting and it will take time for Chuck and Rebecca to return to life. I had finally taken my life back by September. Kind of had to as I returned to work but I also started to work out and get my body back so I could be me again. This is part of the steps a grieving parent takes. Scott also took his life back around October and did things to bring back the real Scott. Even though you still grieve you have to learn to live again and be who you once were before tragedy hit.
On Monday the 10th I felt kind of sick to my stomach all day. I felt clammy and just icky. But Tuesday was a whole new day! Thank goodness. I felt good enough to grade tests that night. And on Wednesday I felt good enough to surf the Internet. I have dropped most of the drugs so my head is starting to clear. I couldn’t really put words together very well. On Wednesday a friend had posted another mother’s writing called Ben’s room: This Mom lost her son Ben at 4 years old to brain cancer. They have set up a foundation to help support research for pediatric brain cancer. They support other forms of treatment rather than chemo and radiation. Here is what she wrote:
The other day after we dropped Ryan off at school, I went up to his room to return the sweatshirt he proclaimed he would not wear. Though I had made his bed and straightened his room up earlier that morning, it was now a complete mess. There were numerous stuffed animals, sports paraphernalia (including goggles – why?) and various musical instruments scattered on the now unmade bed. Multiple team jerseys and athletic shorts lay strewn on the floor. How did he even have time to do all this I wondered? And why do I even bother to clean it up? For ten minutes after he is home from school it will look similar – only with a different choice of items scattered about. But in the midst of my small frustration and bewilderment I glanced across the hall to Ben’s room.
Nothing was out of place. Clothes are folded neatly in the drawers; his animals cuddle together nearby on a shelf. All his favorite books are stacked evenly in his bookshelf, vacuum marks remain permanently on the floor it seems. The quilt is perfectly flat, his worn blanket and sweet band-aid covered sheep lay propped against his pillow. If you saw it, it would be clear that no child lives here – at least no child of mine.
One of the questions I get asked the most, interestingly enough is, “Did you leave Ben’s room the same?” The short answer is yes. His room looks very much like it did the day he died – minus a plethora of medications, tubes, oxygen equipment, pumps, etc. The sheets and bedding no longer smell like cancer. A window must be opened occasionally in order to avoid the scent of a musty library. His beloved husky hat now sits on top of his dresser. But other than that – it remains unchanged.
Ryan is welcome and comfortable being there. He knows what he can play with and what he can’t. In this new world of school and play dates, I will often hear his little buddies saying, “Whose room is that?” Ryan will answer matter of factly, “That is my brother’s room.” “Who is your brother,” they ask? “Ben,” he responds. Sometimes they leave it at that, other times the conversation continues. Occasionally I step in to assist Ryan in the midst of their dialogue – for though this is our “normal”, it is certainly not normal for his friends.
But as long as we live here this will be Ben’s room. It’s not exactly a Land of Nod advertisement – but it is what it is. In the initial days and weeks of his absence I spent most of my days there – in his bed. Now, four years later, I don’t go in there daily. Sometimes a week or more will pass. It is mostly a conscious decision now, unless Ryan is in there. But on this day I pause. I enter. I breathe. I look around his room and my mind still cannot comprehend… he was just here. He was just here.
It may not look like a church, but this space is holy to me. For it was in this place that Ben took his last breath. It is a small snapshot of his short life – of the things and the people he loved most. And so it remains the same. Only we have changed.
And with that I exit before I fall down the rabbit hole of grief.
Ben's Room - So many of us feel this way. Yes, we all go through this in our own way but the reality is that we don't really want reality. We would all like those rooms to be messy and filled with laughter and friends. Our children enjoying their rooms, as we once knew it. I was asked if I was going to move because of the memories. I said no, it is the memories that keep me here. I too can't imagine moving to a house that Kathryn never lived in. It just wouldn't be the same. Her pictures and artwork are all on display now more than ever. I have neatened and changed a few things in her room but for the most part it remains as she had it. Some day I will empty the closet. The drawers were easy, as you don't see into them. Her closet is open so to remove her clothes from there would leave a huge empty hole. One of which I don't want to look at. I have a hard time going into her room but did do it recently to clean and organize as she was nagging me to get it back to normal. I know she was the voice in my head, as she would have wanted it cleaned and organized. Scott goes into her room every day. He places his hands on her box of ashes and talks to her. He feels her presents and this makes him feel good.
My friend Terri came over to get the tickets I had bought for the Long Island Medium show that is tonight. We talked for a while. It’s been difficult for her as she lost her step Dad and then her “real” Dad and now her husband’s Dad is dying. She hopes to connect with her Dad. I told her if Theresa asked about a little ity bity girl you know you will need to raise your hand and acknowledge it is Kathryn. She assured me if anything like that happens she will jump up and then record it all on her phone as she would probably be too excited to remember to write things down. I just hope she has a good time.
Richard and Bee came down last night. It was a good Mommy fix. I congratulated Bee on her Degree. Richard has been checking in daily and telling about classes as he finishes them. He is really done with school. He will just have his student teaching in the fall. Actually it is a semester so he will finish the end of January. I think this quarter was difficult but I think his grades are going to be great! He thought his lowest grade would be in the class he got an A- in so he should be getting really close to a 4.0. He has worked hard. As they were here last night we talked Bee asked me about Rowan’s parents. We all thought it must be even more difficult for them not having a second child. I hope they decide to have another child some day. Rebecca actually had mentioned to me that a baby would be a great thing for me with my loss. She told me jokingly to talk to Richard and Bee and get them moving towards having a baby. I’m actually good where I am right now. I enjoy spending adult time with Richard and Bee. I feel we can share things with each other. I brought up how hard it is on those close to the family too. And as we are so close we forget about how much others close to us hurt. Bee said her grandmother said is was harder for her to watch her daughter suffer so much than it was to lose a granddaughter. I know it was terribly hard for my Mom. She hates it when I hurt. But she was also so close to Kathryn. She must hurt so badly and yet feels that she needs to take care of her little girl all at the same time. See, she is the best Mom. I love her so much.
So here I am (Thursday June 13). I feel pretty good. Got my Mommy fix, walked without the walker today, took less drugs and I am so grateful. I have a wonderful husband who has been a super nurse. My son is my friend and looks after me. My son’s girlfriend is also my friend who I love. My Mom is a delightful woman who I love being with. I have great friends and family. My job is good and the people I work with are supportive and caring. I live in a beautiful place. And even though I don’t have Kathryn with me physically she is here. I have her memories and will always feel her love. I’m a lucky girl!