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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Hey, look! I’m participating in NaBloPoMo! You can, too!

Just Write [108]: In Charge

He walked into the bedroom where I was laying alone in the dark, hiding. A mountain of wadded up tissue was on my nightstand and my phone was in my hand. New tears popped into my already puffy eyes, even though I’d already been crying for hours. How could I still have tears left?

“I know I’ve said this before, but you need to ask for help. You need to tell me what you need me to do.”

“I don’t want to be in charge of everything,” I mumbled. I was completely enveloped in self pity.

“You don’t have to be charge of everything,” he replied.

I thought ‘you’re wrong.’

You need to tell me what to do.

That right there means I’m in charge. I have to know what needs to be done and I have to delegate the things I can’t do.

I never wanted to manage another person. Long ago I recognized that counting on other people to do things in my stead is not something I excel at. My childhood didn’t prepare me for that – it prepared me to take care of things myself. And that continued beyond childhood – I’ve made my career as an administrative assistant – someone else’s right hand. I’m the one people depend on, not the other way around.

Of course, being a parent means I am managing someone, albeit in a different way. I am the ultimate authority in my house about what happens with my son. I chose that role and I accept it.

I am not the best boss, but I fulfill my commitment. I’ve helped my son learn and grow and even thrive (despite his illness and my own shortcomings).

But taking care of a special needs child demands more of me than I ever knew was possible. I am not looking to unload the responsibility or shirk my duty. It’s just that sometimes it is exhausting. Because regardless of how many parents Jack has, I am still in charge.

I am in charge because I know more about him and his medical condition than any of his other parents – by choice. I am in charge because the doctors look to me first for information. I am in charge because I have the job that supplies the insurance. I am in charge because I have primary custody – again, by choice.

I am in charge because, in so many instances, I am the ONLY person Jack lets be in charge of things related to him.

I make his doctor appointments. I sort his pills every week and refill his prescriptions. I call the clinic…over and over. I refresh the test results page and I calculate his ANC. I arrange for childcare or changes to his schedule with his dad and step-mom. I know which foods he eats and which he isn’t into anymore. I know when he’s breathing funny or he is on the brink of a meltdown. I’ve documented so much of his life – on paper and in my mind – and I am the default caregiver because of it.

I could ask for help with all of those things, but taking care of Jack is so ingrained in me that it doesn’t even occur to me to ask for help. Why would I? It’s MY JOB. I’m his mother.

No one can lighten that load – I can delegate every parenting-related task I have, and I will still feel the weight of each responsibility because I am in charge no matter what anyone says.

****

This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.

I Need Peace

For only the second time in three weeks (if I’m remembering correctly – and I may not be!), Jack is at school. It feels like a major accomplishment! Just yesterday he was complaining about abdominal pain and difficulty breathing, but today he made it to school – on time, even!

Oh, happy day!

But – I.am.tired.

It’s hard enough to shut off worry when things are going as planned, but when they aren’t? Oh my goodness! I feel the worry like it’s a ton of bricks on my back and there is no break from carrying the load. I get slower every day, worn down, and dried out. Sleep isn’t restful and my head hurts constantly. Things that usually bring me joy are less satisfying. My tolerance for additional difficulty is NIL.

I was seriously depressed yesterday. On Monday Jack’s labs came back and were just as dismal as they were last week, even though he hadn’t had the antibiotic (that was supposedly causing the low counts) for ten days prior to that. When I called to speak with the case manager about it and ask when we’d get the test back that would tell us if the chemotherapy drug 6mp was the culprit, we discovered that the test hadn’t been done after all.

They forgot.

That freaking test takes a couple WEEKS to get back results so you can imagine how maddening that is. Jack’s been feeling like crap and had low counts for almost two months now and we have only guesses as to why and they FORGOT to take a vial of blood to send in a pretty important test!!!

GAH! It’s maddening!

Yesterday he continued to hunch over a bit while walking due to pain in his lower abdomen and ran out of energy when we ventured out to the Halloween store. I felt helpless. I emailed his doctor pleading for some sort of idea as to how to help Jack…and how to help myself.

If Jack feels better, I can feel better.

Thankfully, Jack is feeling better enough to attend school today and that helps things. It’s risky, but so necessary. I asked him to stay away from sick kids and I am crossing my fingers that he doesn’t catch anything. Hope, hope, hope. He has big ol’ circles under his eyes (9.5 hours of sleep isn’t enough, apparently), but it’s so important for him to see his peers and get to school at least once in a while! And it’s good for me to be at work and do my thing instead of being a hovering worry-wart constantly taking his temperature. Normalcy is important.

So I’m not as depressed as I was yesterday, but I’m still not super chipper. I guess I’ve hit upon a pocket of grief that I’d been storing somewhere inside of me. It started to come out at Type A Conference when I attended the “We Still Blog” session and heard Julia read her post Landing Into a New Life. I wasn’t just in tears, I was holding back sobs. I mumbled something at Julia about what that post did to me and she said, “I wrote that for you” (people like me, I think she meant), which undid the last string holding me together. My grief started to overflow and I couldn’t focus on the keynote following Julia’s reading. I fled the room and headed to the bar for a stiff drink.

Grief and tears leaked out in bits and spurts all night and, thankfully, I was surrounded by amazing women who hugged me and comforted me (those wonderful ladies deserve a post to themselves!) and got me through it. Thank goodness!

The outpouring of my grief caught me by surprise, though, and I guess I just haven’t quite put a lid on it yet. It’s been taking over my thoughts and stifling my words. I’m not sure what to do about it, so I’m just sitting back, letting it run its course, and hoping I come out the other side feeling more peaceful.

I need peace – even if it’s just for a little bit, and even if it doesn’t last.

Getting Away

Hello from Type A Con!

It’s kind of amazing that I got out of the house at all. I went in to wake Jack up for school yesterday morning and he wasn’t budging. After a few attempts, I decided he must really need the sleep so I left him to it. He woke up right as school was starting and immediately complained of a sore throat, a complete lack of energy, and pain in his elbow (side note: complaints of aches in weird places always set off alarm bells in my head – thanks, cancer!).

I had prepared for this possibility and had my good friend Sabrina on call in case Jack’s three other parents couldn’t get out of work before I had to get on a plane. I then prayed that Jack didn’t spike a fever, which would necessitate a trip to the ER. I also shoved down massive amounts of guilt over leaving my son home sick with someone who isn’t his parent. And frustration over the fact that this seems to happen every time I try to go anywhere!

I left the house, though, and I heard cheers in my head! And drove to the airport, worrying all the while that I’d get a call saying a fever had set in.

That didn’t happen, thankfully, and I made it to Atlanta with only a small flight delay. Upon arrival, I did find out there had been a snafu with getting Jack to his dad’s but it got worked out without me. Phew.

I hope, hope, hope Jack stays fever-free and out of the hospital while I’m away. Frankly, if he gets seriously ill while I’m away, I will freak out. I feel compelled to be there and see him with my own eyes when his health at a low point.

I had to get away, though, and I’m glad I did even if much of my mind is still back home. It’s easy to lose yourself when you’re a caregiver if you’re not careful. It is incredibly important to carve out time for yourself to stave off burnout and that is not something I am good at.

However, I’m getting better at getting out, even if I can’t let go. My life is all about counting the small victories these days, so I will take it!