Calm Christmas

I absolutely didn’t expect to have a calm or very enjoyable Christmas. The weeks prior had indicated December wasn’t going to give us a break, and then Jack was slated to be with his dad all week, which generally makes it harder for me to get into the festivities. Still, I dutifully did my shopping and wrapping and decorating. It turned out to be worth it, too!

The Sunday before the holiday, I decided I didn’t care if we weren’t having a big family gathering – I was gonna bake anyway! So I got together with my friend Kurstan and we baked our hearts out. We made cookies and brownies and rice crispy treats and then split them between the two of us. I find baking relaxing and it was also wonderful to spend so much time with Kurstan – between our jobs, her upcoming wedding, and various trips and illnesses, we don’t get to just hang out as much as we’d like.

On Christmas David and I were joined by his sister Stella, my mom and her partner Jim. We opened stockings, had a delicious dinner that was just the right size, played games, and opened up a bunch of presents. We got some awesome things that we wanted and some even better things that we needed. Oh and I made a cake that David has been requesting for the past four years – it turned out perfectly delicious.

Yesterday we had tickets to go see the San Francisco Ballet’s Nutcracker. It was supposed to be the three of us plus Stella, but David got sick and had to stay home. Jack’s friend Alex took David’s ticket and then Alex’s family ended up getting seats behind ours, as well, so we went in a big group. Thanks to a friend I know in the ballet, we were able to get backstage and see the sets and play in the fake snow, too. It was a magical experience! I’m so glad we got to share it with friends. And Jack loved it just as much as he did two years ago!

Jack got to open all his presents yesterday. He got so much stuff! We’re not quite sure where to put it all but he is super happy with his gifts. I even scored him a couple things he didn’t know he wanted (most beloved is the fire-breathing Toothless from How to Train Your Dragon). WOOT. And he now has a TON of Dr. Who toys, including the 11th Doctor’s sonic screwdriver. He’s barely put that down since he got it. I’d say that makes him a happy camper.

So, we didn’t have a huge gathering of friends and family or a giant spread of food, plus some of our celebrating was delayed, but the holiday was pretty drama-free and relaxing. And you know what? I’ll take it!!

Happy holidays, y’all!

I Can’t Write About Spain

I want to write about how amazing last week’s trip to Spain was. Because truly, it was wonderful. I needed that change of scenery. I needed to get away from the stress of day-to-day life. David and I badly needed that time together to be a couple and not caregivers. We got that in Spain and it was lovely. It was so very worth it!

Some day, we’ll go back.

We had a whole week abroad free of worry (for the most part). And I wish I could say that I feel refreshed after that change of scenery, but I don’t. I know I should feel happy – my soul renewed and inspired – and I should be ready to tackle everything all over again. I feel conflicted instead of happy. Less than a day back and the blanket of depression I’d tried to leave behind me when I got on the plane to Madrid enveloped me all over again. Every time I’m asked how Spain was, I say, “it was…good.”

Spain was awesome.

On the other hand, I was not awesome; therefore Spain was…a mixed bag.

I just want to forget the less wonderful things, but I can’t. I’m stuck.

I spent a lot of the week battling a nasty cold that seems to have turned into a sinus infection. I dealt with insomnia (which hit at different times than my husband’s insomnia). Half the time I longed for the comfort of my own bed and an ability to recover from my cold without missing out on a whole world outside the hotel. I was so overwhelmed by many of the wondrous things we saw and yet I lacked interest in other things that I usually would enjoy. I had very little appetite to take full advantage of the foods and wines I had been looking forward to trying. I was so out of it by the end of the trip that I accidentally forgot a painting we had bought in Seville in the hotel lobby before we left on a train back to Madrid. Then on our last night in Spain, David and I argued, my debit card was eaten by an ATM, and I woke up in the middle of the night with a debilitating migraine that had David looking up the cost of medical care for tourists.

There was a lot of bad. It wasn’t all bad and in fact I felt mostly relaxed while in Spain, but there was enough bad to reinforce the feeling that the universe continues to punish me for something that I’m not even aware of doing.

That’s ridiculous, I know. This is life and there are good things and bad things and if I could just remember to think more about those good things than the bad things, I could be a much happier person.

I want to focus on the good. I want to write pages and pages about the magical town of Sevilla and the sheer awesomeness of the architectural details we saw everywhere in Spain. I want to offer recommendations for places to try for tapas and let you know that Spanish in Spain is different than Mexican Spanish. I have lists to share – of American things we’d miss if we ever moved to Spain and things that Spain does better than America. I have nearly four hundred pictures to show off, many of which only offer hints of how mind-blowing everything was and really need some narration!

But I’m depressed. I’m still sick and I had another migraine last night. And it’s December, which has traditionally been a terribly hard month for me anyway.

So instead of writing about Spain, I wrote this.

I’m sorry.

Hasta Luego

In less than three weeks, David and I are taking Jack to school, boarding our dog, and jumping onto a plane headed for Madrid, Spain.

No, we can’t afford it. It will increase the already sizable amount of credit card debt we carry. But we are going anyway.

Jack will spend Thanksgiving week with his dad (who gets holidays on odd years) and my employer has issued an office-wide mandatory vacation for that week. So I have a week where I can’t work if I wanted to and I won’t have my kid. A whole week!

And lord knows we need a vacation! David and I haven’t had a true vacation together since our honeymoon three years ago. We are lucky if we get to spend an hour together each night, and usually that time is spent talking about Jack’s health. We are tired and depressed and even though we see each other daily, we miss one another.

So yeah, we’re leaving the country and getting as far away from our day-to-day troubles as we can. We are going to dedicate that week to taking care of ourselves and renewing our relationship. It’s all about us! We can wake up when we want to and go wherever our mood dictates.

I am excited and so very hopeful. I hope that the radical change in location will help us set aside our daily stresses and replace it with awe over a different country and culture. I hope we can stop talking about Jack’s health for a while and instead talk more about how fortunate we are to have this wonderful family. I hope we can reconnect and enjoy our love. Maybe we can even plan for the future.

Mostly, I hope we will come back feeling refreshed and energized and better able to handle the challenges that come at us constantly.Jack has a year and a half of treatment left. Hopefully this break will fortify us enough to make it through.

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Halloween and the Alien Astronaut

Yesterday was Halloween and as any special needs parent knows, holidays can be totally unpredictable. I wasn’t sure Jack was going to make it to school; similarly to how other recent mornings have gone, he woke up slowly and complained of chest pain. But I just kept on hoping anyway, and he totally rallied!

Since Jack hadn’t been to school much lately, we only just found out on Wednesday about the dress up parade they were going to have Halloween morning. Jack’s dad was in charge of his costume and Trick or Treating this year, but they wouldn’t see each other until after school, so Jack had to improvise and come up with something for the parade – something that included no weapons or masks.

Of course, he chose something from Dr. Who.

He still has a toy chest full of costumes (from his daycare days when he could dress up every day) and luckily, the astronaut costume still fits (I don’t know how!). Jack decided he could wear that and be an astronaut like in Season Six of Dr. Who. Since he couldn’t wear a mask, he wanted face paint so he’d look like an “alien astronaut.”

He sketched out how he wanted his make up to look:

Self portrait by Jack

Self portrait by Jack

After clarifying that he didn’t just want to look like his usual self (“No, Mom, I want a white face with black around my eyes!”), I set to work. I have to say, it felt very strange to apply make up to my son. He did surprisingly well when I put eyeliner around his eyes, too!

spaceface

So serious…

We rushed out the door and got to school in time for Jack to join in the parade. I couldn’t find parking so I did something new – I pulled up to the drop-off curb and let Jack out on his own.

For the first time ever, I let Jack walk up the stairs by himself and I drove away without walking him to class!

It felt weird but Jack was totally fine (of course). *sob* Later in the evening David told me he was proud of Jack, but more proud of me!

I ended up heading back home after realizing the headache from the previous night had turned into a migraine, but I felt proud of myself and my boy. Then I started mentally kicking myself for not getting a picture or staying to watch the parade (thankfully, his other parents got pics of him later in the day) before deciding not to worry about it and going back to bed.

Jack ended up wearing two other costumes for Halloween. He was a “scary scarecrow” for Trick-or-Treating and then some sort of death metal musician with a red cloak. The astronaut was my favorite, though. Somehow that costume felt perfectly appropriate for the milestone of going off to class by himself!

One small step for Jack, one giant leap for mom (or something)…

alienastronaut

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Our Camp Okizu Trip

We recently spent a weekend at Camp Okizu, which is a free camp specifically for northern California families dealing with childhood cancer. Jack had attended with his dad and step-mom last year and everyone came back raving, so we were really looking forward to it. The camp didn’t disappoint and our trip was very special indeed.

So special that I’ve been ruminating over our experience and trying to put it into words since we got back a week and a half ago. The trip overall gave me a bit more peace, although I’m not sure I can explain why exactly. It was a little bit of stress relief, a little bit of validation, and a little bit of forced ‘dealing.’ It was a medley of awesomeness that was both healing and thought-provoking.

We each made our own name tags.

As for the awesome and fun parts, we spent some time shooting arrows at targets (I felt like Merida!), and Jack got to go fishing and actually caught a good-sized Bass. He was so proud! We sat down as a family for every meal! It was wonderful to sit together and relax and eat and talk without having to worry about cooking and cleaning. We attended a campfire and roasted marshmallows for s’mores. Jack ‘participated’ in a campfire song – which meant that he went up on stage with the other kids but acted like a frog eating bugs while everyone else sang and danced. We were afraid he was stealing the show from the other kids but everyone took it in stride (and we realized afterward that he was improvising because he has memory issues).

With some extra instruction, Jack hit the target!

We were told a couple of times that Jack was the favorite kid among the camp counselors. Jack always has a story about something strange and interesting, or a goofy joke to tell, and the adults just cracked up at his precociousness. Counselors sat with us every meal! One counselor made Jack a friendship bracelet and also helped him get a letter from the legendary camp mascot “Tajer” (who is part jaguar, part tiger, and part badger). I wish we knew her name and could thank her directly. The counselors were seriously amazing.

Sporting his new beanie.

In the mornings at camp the adults and kids were split up for separate sessions. The kids went and did various activities while the parents attended what was basically group therapy. We shared our stories – there were a many types of cancer diagnoses and families were in various stages of treatment. The founder of the camp led discussions on 504/IEP plans (and why every cancer patient should have them) and dealing with sibling issues, then opened things up to anything else that was on our minds.

The cabins in Harmony Ridge

One family there was dealing with a terminal diagnosis. Their story had quite an impact – they are living through our worst fears. It really struck me how unfair it is that a child can be perfectly fine and even neurotypical and then, out of nowhere, become incapacitated. Not long ago this child was attending school and playing with his friends and now he is in a wheelchair and steadily losing autonomy. Our story is a mere shadow of that, but still there are similarities. I’m reminded of the similarities – the scary parts of every case of cancer – whenever Jack wakes up and crawls to the living room because he’s feeling “floppy” from the chemo built up in his body.

We also heard from families who had similar prognoses to Jack’s and ‘smooth’ experiences who then went through relapse (one with ALL and one with another type of cancer). As strange as it might sound, that was both scary and comforting. I guess it’s nice to know we aren’t crazy for worrying about that possibility or for almost expecting it to happen. And these parents weren’t all that different from us and we could see them coping, so there was a sense of “if they got through it, we can get through it.” These people didn’t possess some special pool of bravery or coping skills that they were able to access when a new challenge came along. They just kept on doing the best they could and that was enough.

It was also nice to hear others – no matter the ‘severity’ of their situation – admit that they felt guilty for complaining about their difficulties. We ALL worried about those who had it worse than us.

It was funny to me that so many of us with different types of cancer situations were told similar things by doctors at the time of diagnosis – for instance, “this is the BEST cancer to have.” I don’t think it’s that the oncologists are intentionally distorting the facts to anyone – I think it has to do more with the strange nature of cancer – its complexity and the difficulty in determining statistics, plus the disconnect between science, medicine, and real life.

I think the only safe thing to say is that the ‘best’ cancer to have is NO CANCER AT ALL.

We plan to go back to Camp Okizu and I sincerely hope we will see some of the same faces we saw during this visit. I’ve heard it said before that the cancer club is not one anyone wants to be a part of, but you end up meeting some really amazing people in it. It’s very refreshing to see so much good all in one place.