Wednesday, March 31, 2010

Small moments of Ryan

Every time I want to write an update on Ryan, I for a second wonder if I'm jinxing myself. If by writing something, another change will come right away. I know that's ridiculous, but I've always been a bit superstitious and this experience has made me more on edge all the time.

Since last week, Ryan's left side has seen a bit of weakening and that has made it hard for him to get around much at all anymore. He spends most of his days sleeping and is up for about 1 hour every day (if you put all of the time together). But in that time, he is mostly quiet or is trying to communicate something that you can't quite understand. It reminds me of when Tricia was in ICU. They are trying so hard to tell you something, but it's not coming out the way it should. So it's like the hardest game of charades you've ever played and if you don't figure out the answer very quickly, they will get frustratatd and just go back to sleep.

Ryan still tries to get up to go to the bathroom, probably mostly from his amazing fighting and stubborn nature and partly his memory forgetting that he can't, so Kevin, Jo-Ann and I are doing a sleeping rotation in his room. We have a little cot set up so that if and when he tries to get up, we are right there to help him. Then on the other nights I am either at home with Talyn or offer him the option of staying here with me in the guest room.

Talyn is still up and down. Some moments are better than others and he still asks why the doctors can't just cut into daddy's head and get the tumour out! When I told him that it would be too dangerous and would hurt daddy more, he said that he wanted to be a doctor so that he could help fix people. Wouldn't it be interesting if that is the good he gets from this situation? The motivation to study to be a doctor and try to "fix people".

I am trying to manage my energy and be here with Ryan as much as I can to try and get that little bit of Ryan time every day. We all still struggle with watching him within this body that is failing him now and his mind that is mostly foggy, knowing that he wouldn't want to be here. But then we see a couple of moments a day that show us that Ryan is still there - a head nod with a half smirk or a sassy word and we try to take it in and cherish it for the days when there won't be anymore of those.

Thursday, March 25, 2010

Walking the Line

These days have seemed to just melt by and I have to think for a minute to remember what day of the week it even is. I am spending most of my time at the hospice with Ryan now and still struggling with the balance of time with Talyn too. It's something that I have always struggled with throughout my life and now the balance between them both and my own needs is very tricky at best.

Ryan's family is here to be with him and my mom is here to be with Talyn. That allows me to be whereever I want at any moment - which is mostly at the hospice. I always think that if it was me who was confused, sleepy and in a new place alone, I would want him with me - so I am trying to do the same. I can tell he wants me here too because when he does quickly open his eyes every hour or so, he scans the room and then when we meet eyes, he gives me a big smile.

Last night I stayed at home with Talyn and Ryan's brother stayed up here so that I could try and regain some energy. But my heart felt like it literally stopped when my cell rang at 12:30 am from the hospice and the lady at the other end introduced herself. In that moment I thought...."this is it - the call I've been dreading. I can't believe it happened on the night I am not there." Instead, Ryan was very confused and wanted to speak to me, so they called to try and calm him down. Once I explained where I was and that it was the middle of the night and he'd see me tomorrow, he settled down a bit.

Ryan is continuing to battle an increasing headache and is on some heavy pain medications to keep him comfortable. But he says it's always there a bit. His days are spent sleeping more and more and his words are very mixed up. Most of the time, we just try to assure him we understand and that everything is okay and he settles down to sleep again.

In my readings about people that are near death, there is often talk about unfinished business and experiences of crossing over and coming back. We've seen lots of interesting things with Ryan that continue to signal the time is near. He wakes frustrated about something that he needs to get done - unpluggling cords or talking to someone. Once he even told Kevin that he had to go somewhere soon and that he didn't know where it was, but that it would be really good. He will also think that his right hand is moving again and then realize it actually isn't. Are you getting goose bumps yet?

There are many hard parts to what is happening right now. But the worst is watching his body continue to fail him and knowing that if he knew this was happening, that he would want to go. But we can't just snap our fingers and make that happen. On days where I feel strong, I say out loud to someone that I hope he goes soon, because I know that this isn't the life that he wants to live. But then I instantly feel my heart breaking and think that isn't what I want at all. I just want him to stay with us forever.

Yesterday I went to Talyn's school to see what work he's been doing lately. After he finished one exercise he told me that now it was time to make a wish. He wished that we could be a family that allowed guns in our house (we are trying not to allow toy guns in our house - even though he still makes them out of anything he can find) and that his daddy wouldn't die and he could stay alive with us. I told him that I wished that no matter what happened, daddy wouldn't be in pain and that the two of us would be okay.

Thanks so much for all of your kind words that continue to lift us up and bring us some much needed strength as we walk the line.

Thursday, March 18, 2010

My Ladybug

If you've read Ryan's blog, you know that we are seeing some more changes. He has been having some headaches which he is rating a 7 out of 10. But he has quite the pain tolerance after all he's been through, so I am fairly certain it would be off the charts for any of us. Over the last day, they have worked hard to minimize the pain and gotten it down to his "2 out of 10" (our 5 I'm sure). He is now on a steady dose of morphine and that seems to be helping.

He has also been very sleepy most of the time. Both the headaches and the sleepiness are common symptoms for the location of his tumour. They are taking very good care of him here at the pad and the doc will see him again on Saturday to try and assess how quickly things are going. For those of us close to him, it's heartbreaking to watch this all happen - but we just don't want to see him in pain, so are thankful that is being minimized.

Talyn has been having some emotional problems with all of this and it has been expressed as panic attacks when we come to the pad. So we are trying to reduce his visits in half and that seems to have helped. Thank goodness for Skype he can still see daddy when he wants.

And me? Well I am just keeping going. I am keeping myself busy with watching Ryan sleep and doing tasks, but what else can I do? Inside my heart is breaking in two, but I don't want to spend my time with Ryan now upset. I already know that his biggest regret in leaving so soon is leaving Talyn and I alone. If I just cried all of the time when I was with him that would make it harder on him. So I am continuing to find out how strong I am and wait for the fall that will surely come. My comfort is knowing all of the people that are there to catch me.

Over the past 2 months, I have been seeing a cute little 2 dotted ladybug. Some of you are reading this thinking - okay, get this girl some sleep - she is losing it! But I have always been with someone else when these sightings happen - Talyn, Ryan or Jo-Ann. And every time we get the little guy moved to a nearby plant. When I mentioned this to "the coolest spiritual person you'll ever meet" Shane, he wasn't surprised and told me to look up "ladybug" and "totem" on the internet.

What I found is that the ladybug is a symbol of many things and whenever I am having an especially hard time or discussion, they seem to appear. For me they signify a time of change and metamorphisis. They remind me that we've been fortunate to have Ryan in as good of health as he has been for as long as we have - and certainly for the first 5 crucial developmental years of Talyn's life. And they also tell me that although there is 3, soon there will be 2 - Talyn and I and we will be okay.

Love to you all....

Sunday, March 7, 2010

A legacy of smiles

We have seen a few changes with Ryan physically this past week and that continues to break my heart. He has double vision now for most things, wakes up most days with new weakness on the right side and lacks much of the energy he had only weeks ago. This all continues to be hard on him mentally and I really don't know how he does it most days.

With all of these changes, my mind has started to wander to the dark side. In earlier relationships, I was always the girl that completely lost myself in them. But with Ryan, I lost some of who I was and became who we are now. As I think about the potential future that awaits me, I worry about how to find my way in that new life. How do I try to rediscover who I am again at 35?

My eye is almost back to normal. That was one of the scariest things that ever happened to me and also one of the quickest healing things that I have ever experienced. Phew!

We have also had more visitors over the past couple of weekends. It's a very tricky balance. For me it's good to have company and keep my mind on today. It's also necessary for Ryan, as he has a much harder time every week getting up and down our stairs. But we also miss the time we used to have with just our family. In what seems like a life time ago, we had almost too much time together - doing boring weekend errands and resting up from a busy week. Now we don't get much of that and it's hard to even remember what that was like.

The best thing that has happened in the past two weeks is that we have completed Ryan's book and it's going to the printer this week! What book you ask? Ryan has always wanted to write a book to try and help other people and to leave his legacy. With the help of a family friend, Susan, he did it.

They spent lots of time together over the past two months - him talking, her listening and her asking questions, him answering. Then Susan spent a lot of time writing (a true talent she has) and getting all of the other details organized and ta-da - the book should be ready soon. Initially we are printing 200 copies and see where it goes from there. This wouldn't have been possible without Susan - THANKS for helping this dream come true for Ryan!

Although we are experiencing what seems like the hardest of times we've ever had as a family, we still find time to laugh and live in the moment. We got Ryan to a Flames game on Friday night (thanks Don) and still appreciate the time Ryan gets at home with us. Through everything Ryan has been through, he still manages to smile. So when you're having a bad moment take a second to reflect on that and pull yourself out. If he can still smile, then I'm sure you can to!