Project Put Together Starting Point

I feel like I need to have a place to begin on this project of mine, and that means that I need to take a deep breath and share some true confessions with you. These are the secrets I know we all have, but like to pretend otherwise. But I’m going to trust in the internet and believe that I’m not alone in this.

I am really lazy about taking care of myself. Maybe lazy isn’t quite the right word, maybe it’s more like taking care of myself has been a really low priority. When we all have the same 24 hours in a day and a whole lot to cram in, some things have got to go. And for me, that is almost always personal care.

  • I am 5’9″, 180 lbs and I have never ever ever been successful at any kind of exercise. Let alone enjoyed it.
  • I have more pajamas than any other clothes.
  • I tend to go about 3 days between showers, barring goop or scent issues.
  • I almost never do anything with my hair, telling myself that “messy” is in.
  • I only wear makeup on Sundays.
  • If possible between appointments, I will go a full week without leaving the house, even for a walk.
  • Until a few weeks ago I never drank water. Almost all my hydration came from Coke.
  • I don’t take the trouble to eat during the day, normally having some crackers at 3pm and then dinner.
  • Over Atti’s lifetime I’ve gone from reading a couple of books a week to reading one every couple of months, and only if I take my time in the bathroom.
  • I put off my own doctor’s visits because I can’t handle another appointment after all of Atti’s.
  • I never take care of my skin with special face washing or lotions.
  • I really don’t know much about makeup at all.

So this is where I’m starting. And from now on I’m going to do better. I don’t want to be a frumpy martyr mom who lives through her kids. I want to have the respect for myself to take care of myself.

My first step was to give up the Coke, and, seriously you guys, I never believed I could do it. But I did. I’ve been guzzling water like crazy for weeks. One big advantage was that some combination of the new medications I’m on makes Coke taste different. And that was the out I needed. Also really really helpful to get me over the hump was Mio.

Then I knew I needed to address the exercise issue. Not for any weight goals, I feel like I need to completely avoid that as a focus, but for activity goals. With my years and years of health issues, I have a very low tolerance for exertion. And then when I get motivated I always always exercise to injury because my will is more powerful than my body. So I’m not allowing myself to even try anything strenuous. Right now I’m just trying to create a pattern.

My first week on the Zoloft Bear swore he was seeing changes already. I mentioned that to my psychologist and he said that Zoloft wasn’t created to work that way but that, “once people commit to mental health, often their behavior changes on it’s own.” I’m seeing that in myself big time. I want to be wholly healthy, and that means I have to make some changes.

Knowing when to say when

Me and Atti

Because I have no filter and can’t seem to keep anything to myself, I’ve been open in the past about living with anxiety and OCD. But also because I am a chronic smart alec, all my joking may have come across as “I hate getting dirty. I totally have, like, OCD or something.”

Just to be clear, I don’t have “like OCD,” where people think it’s necessary to apologize for liking to be clean. I have Obsessive Compulsive Disorder where I have panic attacks when the garbage can is full, I avoid leaving the house because the world is so scary, my hands feel dirty after I touch doorknobs and I’ve spent literal hours on the computer bouncing between email accounts and my favorite news sites to see if anything new has been posted in the three seconds since I last refreshed.

When I was a teenager I had a really bad experience with medication, so in the years since then I’ve done everything possible to avoid it. I have a ton of coping mechanisms that help me deal, arranging my schedule to allow me as much time at home as I can without being a total shut in, lots of counted crosstitch to ease those counting urges, soothing behaviors that make no sense to a non-obsessive mind but ease my nerves, and skills learned in therapy that help me power through thinking I recognize as irrational.

But as I’ve written and written, this year has been a doozy. With each disappointment that came along I felt less and less on top of my emotions. Unwanted thoughts and fears would stay with me and were starting to affect how I lived. One of the reoccurring thoughts that I have been obsessing over is that I’m going to lose control of myself and hurt Atti. It’s not a desire to hurt him, it’s a script that plays in my head over and over again that some force I can’t control is going to come over me and make me hurt him. As I saw this happening over and over again in my head, I started to be so afraid of this I wanted to limit my interactions with him. Which got me to recognize that this disease had progressed past the point where I could handle it by myself.

Over the last month I’ve seen a psychologist and a psychiatrist and taken tests and borne my soul and I’ve started taking Zoloft. The first couple of days were super rough. I felt like I was on a bad speed trip. My skin felt like it was vibrating. Then I started to settle in as we slowly ramped up the dosage, but once I started taking the full amount my doctor prescribed I got horribly depressed.

When I’ve had friends who have gone off their meds and had a hard time, part of me always marveled at the stupidity. A diabetic doesn’t decide to see if they can get by without insulin, why would someone with a mental illness stop taking their medicine? I get it now. Oh boy do I ever. I always knew that getting the dosage right was an artform and can be difficult to get through, but now that I’ve lived it I understand the temptation to go off so much better. The physical symptoms were troubling, but that was nothing compared to what was going through my mind. I no longer feared losing control, now the script I was hearing incessantly was, “You’re not talented. You’re not special. You’ll never be as creative or successful as the people you admire, so give it all up. You’re not special.”

This is really unhelpful thinking for a writer. If I’m going to share my thoughts with the world, I have to think that somebody out there wants to read them. I wanted that sense of urgency that makes me unable to sit down to abate a little, but I didn’t want to sacrifice my whole sense of self-worth in order to get it.

I went back to my doctor and we scaled back the dosage and I’m doing much better. I’m through the worst of it now. I can’t say I’m quite feeling better yet, but I’m no longer feeling much worse. I’m completely unmotivated to do much of anything, I’ve been spending a whole lot of time watching old episodes of Kids In The Hall while I crosstitch on the couch, but I think that I’ll get better at that as I settle in. Another benefit of having friends walk this road before me is that I know I need to be patient and take care of myself, and one day I’ll look around and realize that I’m feeling pretty good.

For years I’ve joked, in my typical dark humor, that I don’t think of OCD as a disorder, I think of it as a superpower. Every time someone asks me how I do so much in a day that’s always the answer I give them – OCD. But I’ve finally crossed over to where it’s causing me more harm than it’s worth. I’ve spent hours of phone calls and late nights telling my depressed friends to treat their disease like the physical ailment it is, it’s time I take my own advice.

Disappointing News and a big Thank You!

It looks like I’m not going to Africa after all. Some of the details of the trip changed at the last minute which made it impossible for me to make it. This happens all the time in international travel, particularly when you’re arranging logistics half a world away, but with me having a small child and no family nearby, I just wasn’t able to be as flexible as I needed to. I’m horribly disappointed, but maybe I’ll go next year. In the meantime there’s plenty that can be done here to support the people of Gulu, Uganda.

To all of you who donated money, I cannot thank you enough. I so appreciate your support of me and these people. I’ll be sure and send you your money back as quickly as possible.

Blog recovery

I got hit HARD in Blogger’s meltdown last week. I spent the whole day right before the crash working on things only to have it disappear in the bowels of Blogger servers minutes later. It’s looking like what’s gone is gone forever, so I’ll be over here starting all over again. Be back tomorrow.

The Wheels on the Bus Take My Baby Away

Atti rides the lift
The big day finally arrived. After months and months of waiting for red tape, and insurance baloney, and meeting with all the people who had to give approval, we finally got on the route to have Atti bussed to school. It’s a day I’ve been looking forward to bittersweetly, knowing it would be hard to watch him go off without me, but also excited to have more time to myself and less driving all over the place.

Atti on the bus
The morning did not go exactly as I planned. We sang wheels on the bus and talked about what would happen and all the friends he would see, and then, Catastrophe. I wheeled him out the front door to wait for the bus, turned around to grab the camera and Atti rolled off, hit the grass, and rocketed forward right onto his face.

I freaked right out and raced to pick him up, and right then is when the bus pulled up. I tried to coo and snuggle to calm him while Bear wiped the blood off of his lip, but the busdriver was unfazed. He just went about his business strapping in while I frantically sang songs and snapped pictures and acted happy and Atti screamed. He just said, “Don’t worry, he’ll get used to it,” shooed me off the bus, and drove away.

My baby going off without me
I went inside all teary, paced around the house for an hour, snacked on food I didn’t want to eat because I didn’t know what to do with myself, and finally settled down for work. Just in time to get a phone call from Atti’s teacher telling me that his face was covered in fresh scratches and that he wanted to make sure I knew nothing happened at school. I wanted to crawl in a hole. “no,” I told him, “I did that.” Oh the shame!!

He made it home!
He made it home in one peace, shouting “Buh Bye!” to the busdriver as soon as he saw me. He seems to have made it through his harrowing morning without a crippling life long fear of riding the bus. The busdriver told me that every time the bus went over a bump or swayed from side to side, Atti would burst out laughing. Laughing with every bump in the road. Is this my kid, or what?

Tresa’s Terrible Horrible No Good Very Bad Year

So for those of you not keeping track, along with the the regular old facts of my life – child with CP, chronic illness, infertility – this year I am living in a Roadrunner and Coyote cartoon. Dead cat, 3 month sickness including a hospital visit, failed adoption, plus a few behind the scenes things I haven’t been able to mention including a new medical diagnosis that I’m trying to deal with.

Then on Tuesday, catastrophic hard drive failure. My SECOND in three years. I must be sending out electric pulses or something. This one was our external hard drive, so the computer itself still functions, but it was some pretty epic data loss.

Since then I haven’t really gotten up from my computer. Losing stuff like this is a MAJOR anxiety trigger for me, completely bound up in how hard I work, my connection to the world, blah blah blah, I don’t think there’s anything that makes me freak out more than busted technology. I recognize that’s not logical, but neither is my anxiety.

Luckily, after the first hard drive failure, I started being pretty ridiculous about backing things up redundantly. So after a couple of days combing through the internet I was able to put things back together, mostly. I’ve lost all the pictures I didn’t blog between 2004 and 2007, but I’m pretty sure I blogged the best ones and that was pre-Atti, so we weren’t taking many pictures anyway. I can live with that. I’ve also lost my password to photoshop, but I found an open-source editing software called GIMP that I think will do everything I’d need to do anyway.

The music was the worst hit since that was the one area I wasn’t redundant at all. I’ve been re-uploading all my CD’s, re-downloading all my digital files, trying to remember what came from where. Stupid, time consuming, meaningless hassle that became so important to me in the middle of my panic. Bear and Atti spent the evenings playing together while I sat huddled over the keyboard like Smeagol.

The guy at Best Buy said that external hard drives usually only last three years. That seems like no time at all to me, and then I’d have to have a back up for my back up after year two. So this time I’m going to do online storage. I signed up at Dropbox and I’ve already used up my free space. If any of you want free online storage and sign up using this link, then I’ll get more free space to store my photos in. I’m really liking Dropbox, and I think this might be a good home networking solution. If everything goes in the box, then you can get to it from any computer.

So, crisis mostly recovered. But this does leave me pretty terrified considering that it’s only May.

Rocked out

Rocked out

The last couple of weeks have been another marathon of doctor’s appointments as we finally got the medical records issue sorted – kind of – and visited Atti’s pediatrician. He is. AMAZING. Staying late to meet with us, cheering me on to be Atti’s advocate with the schools, being proactive in all the ways I’d hoped he’d be (referrals) but easy going in the other ways I’d like him to be (antibiotics).

But the pediatrician being totally on the ball means that I have to step up my game too as we drove from one end of the Bay Area to the other end of the Central Valley meeting with specialists and spending hours and hours in the pharmacy waiting for medications.

One of the specialists was a pediatric ophthalmologist who recommended we start patching Atti’s eye again and have another surgery by the end of the year. This time, though, I’m not even going to attempt to use patches and instead we’re jumping straight ahead to using dilating drops to accomplish the same task.

Then we saw the urologist, who felt Atti up and then rushed us – efficiently, not panicked – right to his surgery scheduler. Tomorrow Atti has to go in for surgery on his boy parts. Nothing alarming, just a regular hazard of being a baby boy and things not dropping when they’re supposed to, but something we have to take care of before he gets any bigger and it turns into something to be alarmed about.

This has all been exhausting. Looks like Atti will have two surgeries this year, but hey, he made it through his whole second year without one. He’s due.

Atti’s surgery starts at 7am tomorrow morning and then I imagine I’ll have my hands full with a very cranky little boy, so I’ll catch up with you all here Monday morning. Be well friends, and may all your boy and girl parts be just where they’re supposed to be.

Why he’s not intellectually disabled

Pride

If there was any doubt left in me that those early tests were right and Atti is mentally disabled, here’s the proof I need that they were wrong.

Atti’s a really picky eater. Despite all those years of beautifully homemade baby food, he has gone full on carb-aholic on me, and if I let him he wouldn’t eat anything but crackers and juice all day long.

He’s so underweight that we are constantly debating if it’s worth letting him go hungry, or just stuffing calories in his face however we can. I am not a mom that shies away from discipline or time outs, but I also don’t want to turn eating into a big negative experience, so we end up doing lengthy negotiations where we beg him to eat three bites of his hot dog or he won’t get any more cheerios. There is frequently a whole lot of fanfare around The Last Bite.

The other day Bear was feeding him pasta with the promise that if he finished the bowl, he could have crackers. Atti was eating really well so Bear didn’t mention that Atti was closing in on his last bite, he just tried to keep pushing food. Finally Atti took the last spoonful of pasta so Bear set the bowl down on the high chair and got up to get the crackers. Atti looked down into the now empty bowl, realized he had *technically* earned his reward, spit his partially chewed pasta back into the bowl it came from and asked, “Crackers?”

Yeah, this kid knows what’s up.

I want a do-over on 2011

I think this year is out to kill me. Not even two months in and so far my cat died, my camera broke, I’ve been sick for two solid weeks with a cold/sinus infection/bronchitis, we went through lengthy testing that threatened to label my child as mentally disabled, and now what I am about to tell you. To say that I am on a bad run is just not even close to accurate.

So along with all of those stresses, as well as big pressure deadlines for the charity I’m working with, there has been something going on behind the scenes over here that I haven’t been able to talk about.

We’ve been trying to adopt.

For the last ten years I haven’t been interested in adopting. People, in their well meaning ignorance, would tell us that we should “just” adopt as if the only barrier to being a parent was pride and a quick run to the orphanage. Having no stinking clue about the tremendous financial and emotional costs, having every fact of your life judged including, depending on the route you choose for adoption, your height and weight, making yourself as vulnerable as possible as you beg people to allow you to love them, and opening up your life and family to an unknown influence – gambling that the birth parents could be a beautiful union of families instead of a chaotic drain of toxicity.

Being a member of the infertility club as long as I have been, I know many many adoptive families and they are miracles. Every one of them. But I think it’s something you have to feel called to do to make it through all of the obstacles and I never felt called to it.

Until I met this one birth mother. She and I were friendly before I discovered she was considering placing her baby, but as we started going down this path, everything felt right and we both knew that we would be very important to each other. We dropped everything to visit her last month and it was beautiful. We clicked completely. Kindred spirits. From our end of things it felt like a miracle.

We just heard on Saturday that she chose another family.

I’ve been thinking and thinking how I would address this publicly. Chances are pretty great that she’ll read this post and I don’t want to say anything that would hurt her. I want to move forward in friendship with her. I don’t think that was a mistake. I do think that we’ll be important friends to each other. But I also can’t deny what I’m feeling.

But what I’m feeling is just a complicated mess of heartbreak and respect and humiliation and understanding and disappointment and support. How can I even begin to make sense of all this in my own head let alone on the page. I don’t know.

The birth mother is a singularly compassionate and sensitive person. I could never have asked her to take the decision more seriously or to have been more honest with us. I trust her to be able to make the right choice for her and her baby. I don’t doubt her.

And I can’t really be mad at God. There’s no reason why we’re more special than the other family hoping to adopt this baby. Why would this sorrow go to them and not us? Why should our dreams come true and not theirs?

No, there’s nobody to be mad at.

It feels a little indulgent to be so upset about a baby that was never pretended to be mine. I feel like I’ve had a miscarriage, but of course I didn’t. There were no promises, not even hints of promises. Just plenty of hope. And nowhere left to put it.

I don’t know what our next step will be. The caseworker promised me that as she has seen this happen over and over again these disappointments always lead you to where you are supposed to be. Right now I really can’t imagine going through this again, but I desperately want Atti to have a sibling before he gets too much older. And I want a larger family. I just wish I could make God want that for me too.

Happy Birthday to Atti

Mickey kiss
Our whole family is currently fighting off what feels like the plague, and I think this might be the moment of contamination. But it was too cute to resist.

Atti turned three on Saturday, so amid the rush to start school and another conference for me, we went down to visit the grandparents and have a day at Disneyland and party with the cousins before settling in to the school routine. It was madcap, to say the least.

Teacups
Atti’s a little daredevil and didn’t have much interest in most of the little kid rides, but he loved going high in the Dumbo and he loved the twisting teacups. Bear and grandma couldn’t keep up with him.

We ended up leaving by noon, since I was feeling pretty sick and Atti was worn out. It’s hard work for him to sit up so much, but he loved every second of it.

Saturday I went to another one of my conferences and avoided touching any of the munchable babies around. By then I was on day 4 of feeling sick so I thought I was recovering until I came home and could barely get into the bed with the coughing and shivering I was doing. I apologize profusely if I spread this to people. I thought I was on the mend, but apparently it was the calm before the storm and I’ve gotten absolutely walloped.

Elmo birthday cake
While I spent the weekend in bed and on every kind of drug available over the counter, Bear and his mom went into party planning super mode.

Bear bought toys for goodie bags and made this cake from scratch, and Sal took care of the lunch and all the fixings. The only thing I did was wrap a few presents because I felt guilty I wasn’t doing anything. And then I took back to my bed.

Birthday presents

Atti got some really great stuff. New school clothes, tons of learning toys, and lots of attention from his cousins.

And from his mom? He got this horrible mutant flu/cold/plague. Fortunately he seems to have an easier time of it. My immune system can always be counted on to fail me, so hopefully he won’t be incapacitated for a solid week like I have been. *whine*