Today is World Cancer Day. A day to celebrate survivorship, a day to dispel the myths surrounding cancer, and for me a day to reflect on the changes that cancer has brought to my life.
I'd like to be able think more like Michael J. Fox does about his life situation when he said “I once said to somebody that in a way it was a gift… it really taught me acceptance. It taught me a lot about taking life on life’s terms." And yes, I have learned a lot from this experience and I have had to adapt to all of the changes. I just wish I didn't get so bogged down in feeling resentful that this is my life.
I made a New Year's resolution to try my best to be more positive this year; to focus on the positive things in my life, to see the good, and make the most of what I have. In that spirit, I am going to start my reflections of the changes cancer has brought to my life on a positive note. But this blog wouldn't be honest if I stopped there.
I have always considered myself to be an accepting person. I didn't hang out with the clique in high school. I had an eclectic group of friends and we were always open to having people with differences hang out with us. This hit home when I went to my 10th reunion and ran into a friend from my middle and high school years who was developmentally delayed. He was so happy to see me and remembered me because I was always happy to have him hang out with us and to include him in our activities. I went on to college and got my degree in Social and Rehabilitation Services and then my graduate certificate in Applied Behavior Analysis. I worked with individuals with Autism for over 15 years before having to give up my job to stay home with Tim. And I loved those kids (and also young adults) that I worked with!!
Where am I going with this? Well, Tim due to the location of his cancer and resulting damage, has a lot of the same challenging and let's face it "odd" behaviors that a lot of the individuals I've worked with over the years have. I always thought I was accepting of those behaviors but when it is someone who is in your family displaying those behaviors publicly, it's a whole different ball game. I have struggled to not be embarrassed by how Tim acts in public. While feeling guilty that I could even feel that way about someone I love. Remarkably, it's my kids that have taught me to be more accepting but each in their own way. Emma truly is accepting of Tim just the way he is and has found new ways to relate to him. She doesn't get embarrassed like I do. Abby, being a lot more like me does have trouble, especially in public places. But somehow seeing this makes me realize that both of us need to stop worrying about what other people think. He's not trying to be different, he wouldn't want to be seen this way. Of course, some days are better than others, some days I am more accepting than others. But the point is, this experience has taught me what true acceptance is and that's what I am striving for.
Often when someone faces a situation like cancer or any other serious illness, they say that they learn to live for the day. I remember Tim and I feeling that way after his heart surgery. And we really did seem to understand then that each day is a gift. I have a harder time with that this time around. Don't get me wrong, I am extremely grateful for every extra day that we get with Tim especially as we go well beyond the time we were told we'd have with him. It's just that each day he seems to slip a little further away. I talked before in my blog about seeing little flashes of the "old Tim" and that they kept me going on trying to find the perfect balance of medications. I can't say that I've had any of those flashes in a long time. And now the focus with the medications is all about keeping his mood stabilized and trying to decrease the challenging behaviors. My positive side keeps trying to bring out the old Tim while also trying harder to relate to what he is now. Not always easy but since I am home with him full time, I think it's all the more important to spend time with him and find things to do together.
Try as I might, I find I can't help but be angry that this is the life my children have to grow up in. It's so unfair to me that they don't have it as easy as I did, that they don't have a dad to help them with their homework, that they have to watch their dad closely out in public places so he doesn't wander off, that they have to constantly worry about staying calm so as not to make their dad lose his temper, and mostly that they have to worry about how long their dad will be around for. They both have held up amazingly well with all of this stress and I feel that they are both closer to me than maybe they would have been without this situation but I'm just going to say it.....It sucks!! Yes, it will probably make them more compassionate adults, yes they will be even more accepting than I was at their age, yes they will be stronger because of this, but why does something so terrible have to be a part of their daily lives??
Ok, where did my positivity go? I knew I wouldn't be able to keep it up, just as I have been unable to keep it up in my daily life. I think I am succeeding in my resolution in that I am more aware of how I am feeling and when I start to sink, I really am trying my hardest to think positive and bring myself back up. And my friends and family are helping me with that. Which actually brings about the biggest positive change to my life since cancer entered. I truly believe that I have developed deeper relationships with friends and family because of cancer coming into our lives. My friends and family (you all know who you are!) have been the only reason I have made it through the past five plus years. They have been there for me through it all, picked me up when I fell (numerous times), celebrated with me, distracted me, held me, cried with me, laughed with me, gotten angry with me, and most of all accepted me no matter what. Anyone who knows me knows that I have formed an especially deep bond with my cousin Lisa. Maybe that would have happened anyway, but I do believe cancer played a role in me reaching out to her. And trust me, she keeps me going on a daily basis!
On that note, a huge thank you to all who have helped me through the toughest time in my life! And Happy(?) World Cancer Day!
Tuesday, February 4, 2014
Saturday, November 9, 2013
Ramblings
This post is long overdue. Can't believe I haven't posted since June!!
A quick catch up. Summer was good for the whole family. We always enjoy taking the summer "off" and just hanging out at my parents place down the Cape.
And then it was back to reality when we came home. In September we had a door put on "Tim's room" to continue to try to find a way to deal with the ever present leg pounding. Tim had his MRI and follow-up with Dr. Plotkin in September as well. There was some new growth in an area he hadn't had before but they decided to watch it at this point and re-check it in January. The biggest recommendation that came out of the appointment was to continue to look for a day program for Tim both for more stimulation for him as well as for respite for me.
In October Tim went to visit his parents in Florida for two weeks. I spent some of that time in pursuit of a day program for Tim. It has been really difficult trying to find a program close to us that will spend time working with him instead of more of just a daycare option. I spoke to Whittier Rehab in Westboro and they informed me that they do not currently have a program but are hoping to start one in the future. I asked if it was possible to start the program with just Tim and they said they would look into it. Finally some progress! They said that until such time as they get it up and running, he could come on an outpatient basis for services. So I'm working on that now - getting prescriptions for speech, OT, and PT services. Hoping to start soon.
I pretty well feel like my emotions are on a crazy rollercoaster. I try so hard to always "look on the bright side" but sometimes I sink back into the "this is so unfair" frame of mind. Last night my car broke down and had to be towed. Not something that should push you over the edge but when you're living as close to it as I am, it doesn't take much. Having to figure out rides for the kids, appointments for Tim and I, and just the need to run out and get a gallon of milk becomes a daunting task. People are wonderful and everyone offers to help all of the time but I think I've discovered that I really hate feeling needy. I just don't want to be seen that way. As much as I know people are always willing to help, I just feel like a pain in the ass.
So once I knew it could be several days of not having a car, after almost giving into the tears that I knew were coming, I decided to rent a car. Not an expense I needed on top of the expense to fix the car, but to me a better alternative to having to ask for help yet again. I was feeling pretty frustrated about it when I decided to take one more look around the house for a key to my in laws so I could go and borrow one of their cars. Lo and behold I found it and canceled the car reservation. Feeling a little better, I found a ride from one of the best friends a girl can ask for, Laura Catlin, and we went to Norfolk to get the car.
This should have been the end of feeling bad for myself except I got back home and Emma noticed there were no plates on the car. A call to my father in law confirmed that the car is not currently registered and I would need to go back to Norfolk to get the other car. So there I found myself crying in the car on the way to Norfolk and the way back with the correct car.
And here I am still in need of a giant hug and a shoulder to cry on but once again not wanting to ask for help. Though I guess to some extent that's exactly what I'm doing. Why do even the normal things in life have to feel so hard sometimes?!
A quick catch up. Summer was good for the whole family. We always enjoy taking the summer "off" and just hanging out at my parents place down the Cape.
And then it was back to reality when we came home. In September we had a door put on "Tim's room" to continue to try to find a way to deal with the ever present leg pounding. Tim had his MRI and follow-up with Dr. Plotkin in September as well. There was some new growth in an area he hadn't had before but they decided to watch it at this point and re-check it in January. The biggest recommendation that came out of the appointment was to continue to look for a day program for Tim both for more stimulation for him as well as for respite for me.
In October Tim went to visit his parents in Florida for two weeks. I spent some of that time in pursuit of a day program for Tim. It has been really difficult trying to find a program close to us that will spend time working with him instead of more of just a daycare option. I spoke to Whittier Rehab in Westboro and they informed me that they do not currently have a program but are hoping to start one in the future. I asked if it was possible to start the program with just Tim and they said they would look into it. Finally some progress! They said that until such time as they get it up and running, he could come on an outpatient basis for services. So I'm working on that now - getting prescriptions for speech, OT, and PT services. Hoping to start soon.
I pretty well feel like my emotions are on a crazy rollercoaster. I try so hard to always "look on the bright side" but sometimes I sink back into the "this is so unfair" frame of mind. Last night my car broke down and had to be towed. Not something that should push you over the edge but when you're living as close to it as I am, it doesn't take much. Having to figure out rides for the kids, appointments for Tim and I, and just the need to run out and get a gallon of milk becomes a daunting task. People are wonderful and everyone offers to help all of the time but I think I've discovered that I really hate feeling needy. I just don't want to be seen that way. As much as I know people are always willing to help, I just feel like a pain in the ass.
So once I knew it could be several days of not having a car, after almost giving into the tears that I knew were coming, I decided to rent a car. Not an expense I needed on top of the expense to fix the car, but to me a better alternative to having to ask for help yet again. I was feeling pretty frustrated about it when I decided to take one more look around the house for a key to my in laws so I could go and borrow one of their cars. Lo and behold I found it and canceled the car reservation. Feeling a little better, I found a ride from one of the best friends a girl can ask for, Laura Catlin, and we went to Norfolk to get the car.
This should have been the end of feeling bad for myself except I got back home and Emma noticed there were no plates on the car. A call to my father in law confirmed that the car is not currently registered and I would need to go back to Norfolk to get the other car. So there I found myself crying in the car on the way to Norfolk and the way back with the correct car.
And here I am still in need of a giant hug and a shoulder to cry on but once again not wanting to ask for help. Though I guess to some extent that's exactly what I'm doing. Why do even the normal things in life have to feel so hard sometimes?!
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