I was sitting here thinking tonight about my boys, and the conversations we have had, and the decisions we have made along the way. One day I hope that my sons will say to me, Mom, you were a really great mom, and if I never accomplish anything else that alone will make my life complete.
Its been a busy 6 months in our lives, with highs and lows. Aidan had a tonic clonic seizure back in November, and had another one last week. Pretty scary, but at least this time I was more prepared for it. We are now waiting for him to see a pediatric neurologist and don’t really know what to expect. He has been forbidden by his doctor to play video games, and I extended that to computers and tv as well just as a precaution. Its really hard for a kid these days to forgo this without feeling like its a punishment, but thankfully he is also an avid reader and has spent the time rereading the Harry Potter series.
Rowan went in today to do an initial intake interview for a long term study on a special enzyme called “LUMINENZ-AT”. They took a stool sample and will be checking to see if his body is not producing enough of a certain enzyme that breaks down proteins to create amino acids that create neurotransmitters. Forgive me if I didnt get that exactly right, but the general idea is it could help him break down food better to improve the absorption of it and thereby increase brain functioning. If is deficient in the enzyme he will be admitted to the study, which could be upto 3 years long. They will do evaluations and testing, which I hope can give us more tools to help Rowan and understand him better. He was pretty unimpressed by the whole thing, but enjoyed the free M&Ms and finally was won over by giftcards to his favorite store … Target. He wanted to go straight there, but I convinced him tomorrow would be soon enough.
In other news we finally closed on our first home purchase and as ecstatic as I am, my feelings are still mixed. After the initial elation, comes the moving process, which is a bit ill timed considering I am taking summer classes, the boys are in their last week of school and John is working the whole time (as am I, but less so). So these next few weeks will be rough, but I hope things will settle back into a routine by mid July at the latest. Buying a house is thrilling, exciting and scary at the same time, because suddenly we have this big bill we didn’t have before, and this huge long term commitment. I know it was the right thing for us to do, and I am happy, but I still haven’t adjusted yet. We are so tempted to go out and buy all this stuff for the new house, but I’m trying to rein us in because we just plopped a big sum down and need to be caution with our spending until we acclimate to the new budget.
I don’t think the boys have really mentally transitioned to thinking of the new house as home yet, partially because we haven’t gotten the furniture over there yet. John still asks me the address. The first thing we did after we got keys was go swimming in the pool. Day 2 consisted of swimming and moving a few more things over, and day 3 mostly cleaning and no swimming (much to the kids disappointment). Upon leaving Rowan decided we were not getting a new house and became very upset saying “We’re not getting a new house”. I don’t think it will be real to him until we are all moved in and I can honestly say we will all rest easier when we are settled in.
So today (Saturday, 10-13-12) will mark a week since I started trying to quit smoking. Not totally there yet, but I’m working on it. Wearing a nicotine patch and I have cut down to less than 8 cigarettes a day. Yes, I know your not suppose to smoke with the patch on, but the patch only provides the nicotine for a pack a day habit and I guess my habit was a little stronger than that. I am smoking less and less and hopefully will cut it completely out by November. That is the goal anyways. I haven’t told my son because I don’t want to get his hopes up to high, but I did tell my grandma that I am trying and it made her happy. When I sat down and looked at my life trying to figure out what I could accomplish in a year or less to make her proud, it was the only thing I could think of.
Well I am feeling a little better about the whole hospice thing now. We have interviewed a couple of them, sought the advise of friends, and selected the provider that gave my grandma the options she wanted. I have also talked to her oncologist and have gotten a better handle on what to expect in regards to the time we may have left. I realize that there are no guarantees and that things can change quickly, but if we are fortunate we may have a year with her.
Last night we sat my oldest son, Aidan, down and explained what was going on. He took it better than I expected, and I was able to hold it together better than I expected to. We cried a little and talked about the blessings that we do have, like knowing that our time is limited how we can make the time we have really special. I have a lot of things that I want to accomplish this year, not all of it will happen and what saddens me is that later I wont have her to share those accomplishments with.
We have opted to wait to work through this with Rowan. He doesn’t have a good concept of time and I don’t think he really understands what death and dying means. To him its what happens in a video game and you just start over, in video games he loves to make his characters jump off cliffs and fall into lava, laughs hysterically Everything is in the moment, I don’t know how it will be handled when it comes. Both my boys are really close to her, and each has a very different relationship with her.
Rowan was the one who would just go sit and do things in her room, just coincide with her. Cuddle in her bed, sit in her lap, just get her to watch what he was doing. She let him just be, total relaxation. I’m a little worried because , although John doesn’t see it or agree with me, he has seemed to pull away from her since she moved out. Part of that is just that he isn’t looking to her for basic needs like he did when she was here. But since I don’t know what is going on in his head, I don’t know if he is scared or afraid of whats going on. He won’t get close to hug or kiss her, and I know she understands, but it has to hurt. She looks different now, and Rowan does well with change for an autistic kid, but its still hard for him. He doesn’t like people to not be there every day. The few times we have traveled with out him, or that my grandma has traveled with out him, he always gives the cold shoulder for awhile when we return. I wonder if he is confused and is doing that to try to get her back. If I could only have a real conversation with him where he could tell me what he is thinking …
I got a call from my grandma to come see her yesterday. She has been battling stage 3B Cervical Cancer with clear cell sarcoma for a several months. These last couple of months she has been more in the hospital than out. The chemo and radiation has really taken its toll on her.
It all started towards the end of the last school year. She was living with us and had started getting sick, nothing specific, just not feeling well. She stayed in bed more, her arthritis ached, was sleeping a lot. I didn’t know she had been bleeding, until one day she told me that she needed to go to the hospital. This was memorial day weekend. All summer we waited for the paper work to be ready for the treatment to start, why it took so long we didn’t know at the time, and is honestly a story for another day. This post isn’t about that.
She moved out of our house early in the summer because she worried the effect she would have on my boys constantly seeing her sick and because the chaos that is our life was too much for her to handle now. She finally started chemo & radiation the second week of this school year. Its hasn’t been pretty,but I kept thinking that it would be over soon and life would go back to normal. And it will, but it will have to be a new normal, because things won’t be going back to the way they were before. She has been in and out of the hospital, on and off oxygen, fighting nausea and diarrhea, nose bleeds, incontinence . For her its been demoralizing and depressing, as I am sure that it would be for anyone going through this. But the thing is that I thought, we all did at one point, that this was a terrible price to pay, but it was temporary. The was a finite end in sight. I knew that there were risks, and chance of course, but I believed that her cancer was curable. I misunderstood. It was treatable, not curable, big difference.
So not knowing all of this yet, she called me up today and said she needed to talk to me. When I went over, she basically told me she was tired of being sick, nausea and all the other things that go along with treatment. She never wanted to see the inside of a hospital again. She has surrendered, I don’t want to say given up, or stopped fighting. She has fought, and she hasn’t given in, she has just put it in Gods hands now. She has lived her life trying to follow her understanding of his word. Now she is ready to let what ever happens happens. It’s about quality of life, not the quantity that she has left.
I wasn’t in total shock, but neither was I quite prepared. I didn’t understand a lot before today. I didn’t understand that as soon as treatment stopped the cancer would spread aggressively, or that it was inoperable because of the clear cell couldn’t be exposed to air. We caught it too late, from the beginning of our journey, it was only going to be a matter of time.
Right now my heart is breaking, my thoughts are racing and I don’t know what to do. All of our family is in agreement that we will respect her wishes, even if we don’t like or agree with them. We are struggling with how and when to tell the boys, and how to prepare for a future that won’t include her. I know in some ways we are fortunate to at least have this time to prepare mentally, but it’s still really hard. The women in my family have a long history of being healthy and living to an old old age. Heck my great grandma (her mother) is still relatively healthy and active at 95+ years if age. I had always pictured her standing at my kids graduations and weddings someday. It never really sunk in that she might not be there for that. I am still having a hard time wrapping my mind around it.
Two things I hope for before her time comes, and right now we don’t even have a time table to grasp what that might be, one, I want to have a big family picture made of my family, my sister’s family, my father & step-mom Mamaw and maybe even my cousin & her son if we can. Two, I want to have a big family Thanksgiving feast together. I want to build these last few memories of her here, loved, with us. Something I can hold onto and my boys can hold on to after she gone.
John is taking the day off work, and we will all meet with the hospice nurses and see where we go from here.
It has been so long since I have taken the time to sit down and write, for me, for anything other than school. I always say I will get back to writing regularly, but then life I guess gets in the way. I suppose I should really do a life update, where I am, what I’m doing these days, but I’m not feeling it right now. Instead I am going to ramble on about my writers block. Back about a year and a half ago I started an honors psychology research paper on autism. Admittedly I had bitten off more than I could chew, with 13 hours of hard classes and a topic far too broad, so I told my prof that I was withdrawing from honors credit. But I did work on it, and I worked hard, I just couldn’t narrow my scope and get it written. Now I have always managed to pull it together, even at the last possible moment, and pull off an A. So with that in mind , it was hard to back down. Fast forward to today, and I can see that not completing that project has sown the seed of doubt in my abilities to write and complete a quality paper. Ever since then I have avoided at all cost academic writing. It has cost me dropping a few classes,, which is embarrassing. It has also made me get a lower gpa, which is going to be a problem if I can’t figure this out and pull it around soon. I hope to get into grad school one day in the next couple of years and I will need not only a stellar gpa but excellent writing skills. Can someone just slap me please? I need a shove in the right direction.
I couldn’t let this day pass without noting it here. People often talk about where they want to be a year, two years, ten years down the road. Ten years ago today I was looking at my life, thinking just that, except I didn’t like what I saw. I decided I had to make a change. That to this day was the single most difficult and painful decision of my life. But it was the right one, of that I have no doubt. When I looked at my life and thought about where I wanted to be ten years down the road, I didn’t quite envision where I am today, but I have done and experienced much more than I imagined. I guess timing and meeting the right person really is everything. Casey, I hope you have forgiven me for hurting you. I hope you have found out who you are and met someone who can love you as you deserve to be loved. As for me I have everything I could ever want, a man who understands me and loves me anyways, and the best sons in the world. John, Aidan & Rowan; you guys are my world. I love ya’ll so much. It’s hard to believe that I didn’t have any of you all 10 years ago.