Wednesday, June 3, 2009
I recently started a new special little thing with my sweet little Aria. (For those who don't know, Kylynn's middle name is Aria and I often called her by it, or sometimes shorten it to Ari. She answers to it for me. It's another one of our special little things I guess.) Since she was a baby, at night, after she was asleep, I would go into Kylynn's room and pray for my little girl. Recently I started printing out pictures of angels and leaving them in Kylynn's room with my prayer for her that night written on the back. Kylynn loves this. I love it too, but it does make me a little bit sad also as I find myself, not just praying for my Squeakers (again, a Kylynn nickname), but also trying to write something meaningful and instructive for her. It's hard to explain so I'll give you an example of what I write for Kylynn:
May 18, 2009
Mommy prayed for you tonight, Kiki. I prayed that you may always have hope no matter what life might bring you. Sometimes life throws some rough stuff at us, but if you hang onto hope and your faith, darling daughter, you will always find a way through.
I love you more than anything!
Sweet dreams, Kylynn, and God bless you always!
After my surgery I was staying at my parent's for a bit and it was usually my mom who would read to Kylynn what I wrote on the back of her angel pictures. One morning after reading to Kylynn my mom came to me and said that she thought it was a good thing, what I was writing for Kylynn, but that it also made her sad because she felt like I am trying to prepare Kylynn for a time when I wouldn't be here anymore. That is exactly why it makes me a little sad too, and it is, indeed, part of why I started doing the angel pictures for Kylynn. My sweet little girl has an amazing relationship with God for someone so young and I want to encourage that in her. I also want her to know that I pray for her all the time. I, also, want to teach and tell her somethings now so that if anything happens to me she will have that knowledge and faith to draw on. And when I'm gone she will have all her angel pictures and mommy's word to keep forever.
But my pictures of angels are not the only angels that my Aria has. No, hardly. My little girl has more angels than she will probably ever know. It has been my wish that Kylynn go to St. John's school when she starts kindergarten in the fall. My reasons for this are many. At St. John's, I feel like Kylynn would have more support and understanding as she tries to deal with her mommy being ill. There is only one class of each grade at St. John's so Kylynn would be with the same kids year after year and I hope that would give a group of friends that become close, like a family, and that those friends can help Kylynn through any troubles she may face. Kylynn has such a strong faith already, I want that to be part of her everyday life. I think the quality of education and amount of personal attention Kylynn would receive at St. John's would be much greater than what she would receive at a public school. The list goes on and on. So Kylynn was enrolled at St. John's and my husband and I took up the worry of paying for her education in addition to all my medical stuff and just the everyday stuff. It was going to be a stretch for us and possibly an impossible one, and then, angels descended into our lives. Some of my dear, dear friends, Michele and Sheli in particular, took up the cause of raising money for Kylynn to go to St. John's and soon after they did Kylynn's little life started to just swarm with angels. Friends from high school that I haven't talked to in years (special thanks to you, Joe!), other friends, friends of friends, relatives, and strangers have all come together to help make my wish for my daughter a possibility. I am overwhelmed by everyone's kindness and just so very, very grateful. There are not words enough to express just how much it all means to me and how very touched I am by it. My Aria is blessed to have so many angels in her life, and so am I!
And so, even on the rainiest day, there are angels to be found everywhere! They may wear the disguise of stranger or friend, you have but to look closely and you will see them.
Tuesday, June 2, 2009
Back, long before I had this lovely blog, I kept a blog on my MySpace page. I recently went back and re-read some of my old posts and for some reason my old "Swamp Castle" post keeps popping into my head. So I thought that I would re-post the "Queen of the Swamp Castle". I originally wrote the post on April 13, 2007, some stuff has changed since then, but much is the same. So here ya go!
There's a quote from Monty Python and The Holy Grail in which the "Lord of the Swamp Castle" (for lack of a better name) is telling his son about the castle which he will inherit. A rather funny scene and the quote goes something like this:
"When I first came here, this was all swamp. Everyone said I was daft to build a castle on a swamp, but I built it all the same, just to show them. It sank into the swamp. So I built a second one. That sank into the swamp. So I built a third. That burned down, fell over, then sank into the swamp. But the fourth one stayed up. And that's what you're going to get, Lad, the strongest castle in all of England."
Lately I have been having some rough days. I have been feeling like this stinking cancer keeps taking things away from me. It started with three quarters of my liver but the damn greedy things wasn't content with that and has sneaking in regularly and taking other things. Next it was my hair, I know it sounds stupid, but oh, how I miss my long hair. And the loss of my hair in combination with the gifts of an 8 inch scar on my abdomen and a body that I swear the switched on me at the hospital, cancer has managed to take a lot of my self-confidence. Okay, I know that self-confidence can't really be taken without my relinquishing it in a way, but... Well, imagine looking into the mirror and seeing someone who you know is supposed to be you, but doesn't look much like you think you should look... It's just an adjustment, I know, but it's one I don't understand why I have to make it. And so the Swamp castle sinks into the swamp. Then cancer sneaks in and takes peace, stability, and that beautiful (although false) sense of being young and having all the time in the world to do and accomplish things. I'm 30. A decent number of years, but still not an age where you would think that perhaps the majority of your life is behind you. Now, I don't know and that uncertainty is enough to drive anyone crazy. Trips to Mayo for check-up are dreadful things. Will I be granted another month or two of relative freedom or is it back into the hospital for some delightful treatment? Some days it's a battle to push away the thoughts of the worst and all the "what ifs" and to just live... to just be like everyone else. And that stinking Swamp Castle sinks again. And then in a sly, stealthy attack cancer has managed to pick away at my job, part of my identity, and something I worked hard to build and was proud of. I am not working currently, I am on disability leave from my teaching job. Now, despite some annoying things, I really did enjoy my job and it does bother me that I don't have that right now. And to add insult to injury, the way my classroom is currently being run is... well, not the way I would do it and so much of what I worked so hard to put together has been taken apart. And I don't know when or if I'll go back to teaching, I hate that. Teaching has been such a big part of my identity. Again, I know this sounds stupid, but if you think about it we do tend to use our occupation as part of our definition of who we are. Crap, where did that damn Swamp Castle go?! Some things that cancer takes are less obvious or harder to explain. Like having friends who have cancer. Just having a friend who is sick, sucks. But when they start doing worse while you are still doing relatively well... There is a weird guilt to that, plus the pain of knowing what they are going through and what their family is going through. (Please keep my friend, Karen, in your thoughts and prayers) And among the harder to explain things is the despair or just overwhelming sadness that cancer seems to be able to set upon you without notice. Thank God it passes, but while it lasts it is miserable. For those of you who know me well, those are the days that I cry at everything. I hate those days, despite what my husband might say, that's not who I am and certainly not who I was.
It gets tiring to keep building the castle over and over and there always seems to be something else to cause it to sink, or as it has felt over the past few days "burn down, fall over, then sink into the swamp". But build it I do and each time I do so I think I learn something and hopefully make my castle stronger. Of course, one is apt to wonder why anyone would continue to try and build a castle on a swamp. But sometimes your solid ground gets snatched away from you and a swamp is all you have. Then the choice becomes do you just sit in the muck or do you build castle after blasted castle? I, as I imagine you would, choose to build. And one of these days the damn thing is going to stay up...
As I mentioned, a few things have changed since I originally wrote this. My friend, Karen, who I mentioned passed away just two short months after this was written, leaving behind two beautiful little boys and her sweet husband, Ed. I, still, am not back teaching and it looks as though I may never return to that part of my life. I really do miss the children I worked with and my two fabulous assistants, BUT now I do get to stay home with Kylynn and spend what energy I have on her, and that's a good thing. Despite the fact that my hair is finally below my shoulders again, I do sometime still miss my old hair, my long red hair, but at least I have hair and I am starting to look more like I used to. The emotional stuff that has to do with cancer is still all the same and I suspect that it always will be. I live in a constant state of "not knowing". I do have days where it is just overwhelming and I do have days where I just cry, but for the most part, I like to think that I have adjusted to the "new normal". In the end, I think cancer is always going to keep trying to knock down my swamp castle, but , with any luck, my rebuilds are getting stronger and one day, not too long from now, my castle with stay up despite what cancer throws at it.
So I would have to say that, even on the rainiest day, when the swamp is the muckiest, there is still the comfort that I, at least, have a castle and that this time it just might not sink into the swamp!