Friday, February 19, 2010

You will be happy

Initially when we heard the really bad news in early January, we had a period where we tried to adjust to it and then started putting some things in place. We hurried to get all of his legal documents current and had a lot of hard conversations. But since then Ryan hasn't had any big changes, so we've settled back into a new normal life. Most days I have some time with Ryan, he has a nap, someone else may visit and then Talyn, Ryan and I spend the evenings together at the pad. We eat dinner together, play a game and then Talyn and I go home to get him to bed.

On the weekends, we have been lucky enough to have him home for one or two nights too. Physically, his right arm continues to weaken, so he now has it in a sling to keep his shoulder and wrist supported. Some days he is very tired and others, surprisingly awake and alert.

At the end of last week, I caught a quick glimpse of another young brain cancer patient and his family, that we recognized from the Tom Baker Cancer Center. I told Ryan that he must be touring the hospice and we hurried outside to say hello. He is younger than Ryan, with a young wife and his parents were there too. It was at that moment that it struck me how unfair this all is. To us, we've always just accepted this as our life. But looking at a similar situation as an outsider, it seemed incredibly wrong. And that image stuck with me for many days afterwards.

Last weekend was a hard one mentally for us both. We had our hard time initially adjusting to the news in early Janaury and getting through the hard planning and conversations, but then we had some time to just be. But lately we've had another period where we have stopped and the reality of what is happening has hit us.

I have continued to try things to keep my energy up and reiki has been helpful. Our friends also arranged for me to have a hot stone massage - that was really helpful! Finally, I went to a work dinner and got to re-connect with a bunch of people that gave me a lot of positive energy, as they asked about Ryan and assured me that they are thinking of us and sending us lots of positive thoughts.

At that dinner, I had one conversation that really stuck with me. Someone pulled me aside to ask how things were going and in that moment, I let go a bit and told him that I didn't quite know where to keep my head these days. He said he didn't know either, but what he did know is that however things turned out ... "you will be happy". No one had said that to me yet, or if they did it hadn't hit me like this did. I actually breathed a sigh of relief and felt a bit lighter, with some new confidence that I could get through this and find happiness again some day.

In the last couple of days, we had another small challenge. Talyn accidentally poked me in the eye and when he did it, his fingernails sheared my cornea. I have been through a lot of different painful events in my life, but this one took the cake. I have never passed out from the pain and this time I came very close to that. I am on the mend now, after spending a couple of days looking like a "wanna be movie star" with sunglasses on at all times. One of my darkest thoughts has been "what if something really bad happens to me physically when I am home alone with Talyn? How can I handle that?". But the most important lesson I learned from all of this is that I can do this alone...if I need to.

Wednesday, February 10, 2010

Trying to hold my heart together

It is incredibly heart breaking to watch this happen to someone so full of life. I try to comfort myself in the positives - I was lucky to have such an amazing husband for the time I did, it truly changed me for the better. He has taught me to slow down (still working on that one), let more things roll off my back, has given me an amazing son and really helped to make me who I am today.

For those of us around him, we know that things are progressing, but I try not to see it. When he comes home on the weekends, it is the clearest to me. I have to help him get around much more than the week before. Although he tries his best to do everything on his own, he does need more assistance now. His right hand is much weaker and doesn't do much he wants it to and he struggles more with walking - but I am still so proud that he is defying the odds as his mobility was supposed to be gone by now.

The last two days I have felt a tight ball in my heart. It just feels stuck and I don't know how to make it better. I went to acupuncture and my doctor told me that my emotions are really stagnated (which is shown in medical terms by my liver not moving like it should and not riding my body of the toxins it should). This is a real warning sign to me because that can lead to bigger problems if my body remembers the ugly cancer stuff it had before.

So, I started going back to the gym this week. Working out has always helped me work out the bad stuff before, I run like mad and feel better as I push my lungs and visualize me pounding on the ugly things in my life at the time. I am also going to Reiki and get some help pulling some emotions out of me. I don't feel like I'm trying to hold anything in, it's just stuck. So a good friend recommended this way to get someone else to help me pull it out.

Talyn continues to do fairly well, but has his moments where he is trying to figure everything out. He has even said some things this week that break my heart. He told me that he wished I would die and daddy could stay and be with him, but I realize they are out of anger. It still breaks my heart that I can't fix it all for him. He went to his weekly play therapy session last week and was really struggling with being there. He said he wanted to go and was having a bad day when she was asking him the hard questions. So we ended up finishing early and shortly after Talyn started vomiting. I took him home and spent the day cuddling him and watching G-Force.

The great thing that happened this week is that I got a ring made for my right hand ring finger. I realize that I will have to take off my wedding rings at some point and that will feel like Ryan is really gone. But with this ring, I can always wear it. I chose Ryan's birthstone - a blue topaz and it is held together by three small bands to represent the three of us together in our hearts forever. It is a reminder of all of the amazing things Ryan brings to my life and that whatever happens in the upcoming months, having him a part of my life for even this short time is not something I would change if I could.

Monday, February 1, 2010

My little protector

Last night I was giving Talyn a bath at Ryan's new "pad" (that's what he wants us to call the Hospice) and he was asking some more of his really hard questions. Then he said "I can wait until I get bigger and then I will marry you!". I started crying quietly and he said "isn't that a good idea momma?" and I said "you are the best my love". In his little word, he had something all figured out to try and fix this terrible, unfixable thing that is happening in our world.

Ryan moved into the hospice last Thursday and even though we were struggling with the timing of the move terribly, it was even better than we thought it was when we got there. The house and its staff are absolutely amazing. We had no idea it could be a good thing mentally as well, but it is. It's a place that allows me to relax because they can cook meals for all of us and has a great playroom for Talyn. So it's quickly turning into a family place for us that is safe and quiet.

Then we took Ryan home for a weekend pass. I was a bit nervous about that. After only a day in hospice, I was already worried about how I would manage. When we got home, Ryan was a bit nervous too - he missed his safety net and the convenience of everything in his room being so close for him. He got fairly tired moving around our house and was actually happy to be back at the pad last night.

I continue to be mostly "ok" - whatever that means. Last night when Talyn and I got home for the second night on our own, he quickly fell asleep and I watched Desperate Housewives - something Ryan and I always watched together. It was a good show, but something came over me at the end when Bree attended a 50th wedding anniverary. At that moment, the reality hit. Ryan and I likely wouldn't get that and I wanted it. But there's nothing I can do to change the future.

The company that I work for continues to amaze me too. They are giving me this time off to be with my family. I can't help but feel some guilt bubble up to the surface from time to time about that. But at the same time, things are so busy that I haven't yet found a way to fit some "me" time into my days. Hopefully this week I can find a way to work that all out.

Friends and family continue to swoop in where needed to help us out with the smallest day to day things and that is helping tremendously. It's hard to know what we need, but they seem to.

Now it's time to get up and get on with another day and hope that it's a good one. Our love and thanks to you all!