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Most depressing picture ever

My life has always been relentless. But this is ridiculous.

Everybody suffers in this life, and I really really dislike it when people stay stuck in their pain and treasure it. When they insist that their pain is THE MOST SPECIAL PAIN. When they refuse to gain empathy or perspective and just canker. I’m not one of those people that falls for the “someone always has it worse so you don’t get to be sad” trap, but I am someone who believes that pain is not an exclusive club and you are never alone in your grief. Which is why I blog.

I’m not a war refugee or a torture survivor. I’ve never been incarcerated for something I didn’t do. But that’s pretty much how far I have to go to find someone who has had it worse than me, and in a way that reveals either my total brokenness or my health and resilience, I can never decide which, I find that somehow comforting. And hilarious.

It’s hilarious because I have a twisted sense of humor and an appreciation for the absurd. It’s comforting because this world does not know how to deal with pain. Every negative emotion is a problem. And if you are a religious person, it’s of the devil. We’re supposed to fake it till we make it and look on the bright side and have a positive attitude. And those things are all fine if you’re grumpy over daylight savings time or frustrated with the people you have to share a living space with. It does not work for tragedy. And it DOES NOT work for mental illness. But that’s what we get anyway. One size fits all advice even when it binds us.

Because of that, we often need permission to feel those feelings. We need someone to say, “That is really hard. It must make you sad.” or “That would make me feel really angry.” Most of the work I see happening in group therapy or among friends or in my role as a peer counselor is validation. “I see that. It would make me feel frustrated too,” feels like salve on a burn. “You are right to feel that way,” is like an incantation. We spend our lives either hiding and ignoring our feelings, or fighting for the right to have them.

So when I am *this* sad, and *this* weary, it actually feels perversely comforting to look at the facts and go, “Yeah. You should be sad. The only thing that would be worse is if you were trying to escape Syria right now.”

Atti’s surgery went really really well, but his recovery has been super rough. He had to stay twice as long in the hospital as he was expected to because a body with Cerebral Palsy is like a beautiful 150 year old house. Even in the renovations you’re going to run into problems. Atti’s bladder refused to work, so he had to be catheterized for far longer than expected. And the catheter kept clogging leaving him writhing in agony and screaming “I’m Sorry! I’m sorry!” over and over again, but unable to tell us where it hurt or what the problem was. His spastic body ramped up with fear and pain until his whole body was tied up with cramps, and every treatment for one thing caused a new problem somewhere else. He was in such turmoil that he could only be calmed if one of us stood at his bedside petting his hair and playing his special lullaby over and over and over again. For seven straight days.

And in the middle of all this, I started bleeding.

For two years we’ve aggressively been pursuing fertility treatments. Treatments that forced me into a mental hospital and major surgery. And, because, of course, when all the conditions were finally right for embryo transfer, Atti was about to go in for the surgery we’ve been waiting for for a year. Of course. And while he was in this painful recovery process, that’s when it became obvious the procedure failed.

It’s hard to know what to call this. It wasn’t that I just got my period – this was a rejection and far more physically involved, but since I wasn’t technically pregnant it’s not exactly a miscarriage either. But those embryos meant something to us. To Bear they were babies. To me they were possibility. And either way, they’re gone.

And we just had to keep putting one foot in front of the other to be there for our boy.

We took Atti home a few days after that and it’s still been harrowing. His catheter got caught on the wheelchair when we were trying to load him into the car and broke and partially pulled out. Atti was screaming, I thought we’d have to be readmitted, and there was a moment where I honestly began to collapse and prayed for death to claim me there and then in the hospital parking lot.

His pain has been so intense we’ve had to keep him medicated around the clock, which meant we were waking up every four hours to screams of pain and had to soothe him back to sleep for another hour, like we had a newborn that couldn’t be removed from their crib. His catheter clogged again, only, not being a medical professional, I didn’t realize what I was looking at and thought it was opioid constipation, so he screamed all day until a nurse friend came over to help us. Then it happened again the next morning and we had to take him back in to the hospital and spend the whole day there while they tried to see if he was ready to leave the catheter behind.

Atti in recovery

Today he is outside in the sunshine playing on his ipad. He has left the pain medications behind and is now soothed by music and attention. He’s still strapped into all his immobilizers and can’t sit up, but it’s only boredom we have to fight now, not pain. Which means that all that grief I’ve been shoving away is sneaking back up on me now. So I tell Atti I have to work and go into the bathroom for a 5 minute break down. Or I’ll cry at his bedside and tell him that I’m sad we don’t get to have more babies in our family right now because I think it’s important to show him how to cope with hard emotions.

I’ve been hiding in work – work I haven’t announced here yet because there was too much hard stuff in the way, but I’m developing a media startup, complete with keeping startup hours – but over the last couple of days I’ve been blocked. Completely blocked over the dumbest stuff. I need to work on our social media campaign and just write a bunch of FB statuses, and I can’t do it. I’m staring at cursors and debilitated by depression. Because now that the crisis is over, it’s time to process. And I don’t want to.

But that’s another thing about having a life as hard as mine. You only have two choices for survival: 1) ignore and deny it all and let it corrupt your soul, or 2) deal with your shit. So I’m dealing.


Getting back on the horse

Atti sleeping
The last few weeks have been tough around here. I know, I know, when are they not, right? Such is my lot in life.

Some of it is just the stuff of every day life – the chaos of a new puppy, the entire family having the flu for two straight weeks, the filth that develops when the whole family has the flu for two straight weeks – some of it is quite a big bit of health news that deserves a whole post of its own another day, and some of it is stuff that we actually planned and signed up for. The fact that it all comes at us at once, that is just classic ‘how we roll.’

Atti’s fourth birthday, coupled with some ramping up of some of the symptoms of my endometriosis, made us reevaluate where we’ve been with the whole fertility thing. We’ve been trying for baby #2 since Atti was still baking in his little plastic box in the hospital, knowing that the odds were everlastingly against us and the best possible chance we had was immediately after a pregnancy. But that hasn’t worked out for us. I have a whole bunch of friends who went through endometriosis and once that first child came they became pros at it. I have two different friends who tried for YEARS, had their first child and then had three more in three years. Not so much for us. Not even a pregnancy, let alone one that stuck around.

As each month went by, the pain came fiercer and fiercer. When I had maxed out on advil and I had used up the last of the painkillers from Bear’s wisdom tooth surgery, I knew it was time to face going back in for help. Kaiser has many virtues, especially when you’re the parent of a child with special needs, but doctors who have the time to listen to your concerns and consider your entire history are really not available. My OBGYN is perfectly nice, but is also under pressure to crank out the visits so I can’t exactly sit down and tell him every single thing we’ve been through. He wanted to put me straight onto drugs that would increase my fertility until I insisted on treating the endometriosis first.

So I am currently on Lupron. This is my third time with this drug, but I manage to forget what it’s like every time. The massive mood swings, the emotions, the hot flashes. I went to the doctors office my normal self, got a quick shot, and I came home transformed into Mrs. Hyde. Our plan, that we came up with in literally four minutes worth of doctors visit, is to do a quick three month course of the Lupron, and then go onto Clomid to increase my fertility and give Bear’s few little swimmers as many targets as possible. This plan sounds great to me, but I confess I’m a little worried. No doctor has ever suggested such a thing. And I’ve seen a lot of doctors. Does that mean this guy is a creative problem solver? Or didn’t give me the time and attention I needed to make an appropriate treatment plan? I have no idea. I just know I got the Lupron I went in there for, and I’m willing to try just about anything to have another baby.

But I’ve heard that the emotional upheaval of Lupron is nothing compared to Clomid. If Lupron makes me feel like I have PMS, Clomid will apparently make me feel like I have bipolar disorder. If Bear and I stay married through all this work of trying to have another kid, we’ll all know it’s true love.

The hardest part of all this is not the medications or the treatment plans or even the mood swings. It’s that in getting proactive about my fertility, we have to open this door again and face all the loss and disappointment we feel every month it doesn’t work. During these last four years there were loads of months that it didn’t work out when it didn’t bother me. It’s easy to get caught up in the stuff of life and not pay super close attention to the big empty spot in your heart. But getting serious and really doing the work means paying attention. To my body, to my fertility, and that means to heartache. It’s so much easier to just close that door and skip merrily along, but what I really want is on the other side. So I have to be brave and face the loss in hopes that someday I’ll get to face the bounty.





Atti’s Halloween costume

I was racking my brain trying to come up with an outfit for my little guy this year. He’s not obsessively into anything that would make planning a costume easy. I was in the middle of a phone call with my friend Sara, complaining about this very problem, when the perfect idea hit.

I’ve made no secret that we are ridiculous saps around here. I call Bear, Bear, friends and family have always called me Tree (even though it’s spelled funny, my name is actually pronounced TREE-sa, so that’s an easy one) and when we talked about a kid that was a little bit him, a little bit me, it was easy to see that it would have to be a Koala Bear – a little bear who lives in a tree. I know, I know. We’re disgusting.

Koala Bear Costume

It was a really easy costume to make, so let me walk you through it.

Koala Bear costume Step 1

Fold a piece of fun fur in half and cut it to the size of your kid. The fold makes up the shoulders, so I just laid Atti right on top and cut the other three sides. Then I cut out a notch for the neck, and cut the front of the vest up the middle.

Koala Bear costume Step 2

Refold the vest to lay right sides together, and sew up the sides, leaving a few inches open at the top to make arm holes.

Koala Bear costume Step 3

Cut another piece of fun fur for the hood. Long enough to touch shoulder to shoulder, and deep enough to cover the back of your child’s head.

Koala Bear costume Step 4

Fold to make right sides together, and sew the back closed. If you give the top a little big of a curve, it won’t look like a conehead.

Then just sew the hood to the neck of your vest. Line up the middle of the hood with the middle of the back of the vest, right sides together, pin in place, and sew it down. For Atti to cooperate with wearing it, I couldn’t let it choke him, so I just sewed the hood to the back and sides of the vest, and then cut any remaining hood off at an angle so it blended in. Fun fur is extremely forgiving, and once you hem it, it will look like everything you did was intentional.

Koala Bear costume Step 5
In this picture you can see just how imprecise I was. That’s the best part about Halloween costumes. It’s not like you’re going to be entering it into the fair or anything.

For the ears you’ll need to cut four little half circles. Sew the pairs together on the curve, leaving that flat part open.

Koala Bear costume Step 6
Cut a couple pieces of wire big enough to match the curve of the ears and stuff them inside. This will help the ears to stand up better instead of just flapping next to the head. Once the wire is inside, just sew those ears right down to the outside of the hood. I arranged them so that the round part was facing the front of the hood when I sewed them down. I think this way works best to get them up and out.

Koala Bear costume Step 7

The cutest part of a little fuzzy thing is the paws, so since I had plenty of fabric leftover, I thought I’d make a little pair of moccasins to go with the hoodie. I totally just scrapped this together, but hey, it worked. I cut four pieces of fur about 3/4″ bigger than an outline of Atti’s foot, and then I sewed the pairs together, right sides together, all the way around.

Koala Bear costume Step 8

With these little tribble looking guys, I cut a hole about the size of a quarter right where the foot slips into a shoe, then I turned them right side out. Cut a straight slit down from the hole to make enough room for the foot.

Koala Bear Halloween
When I laid Atti down on the fabric to start cutting out the pieces, he would not hold still long enough for me to do the job. He kept rolling over on his belly and rubbing his hands through the fur yelling, “Kitty! Kitty!” I think in his world, everything fuzzy must be a cat.

You can probably guess by the apples in my hair that I am supposed to be a tree he’s clinging to, and then Bear’s going to wear a big ugly Hawaiian shirt and carry the camera and call himself a tourist. We figure that we don’t have to put a ton of work into making us look cute when I’ll be carting this little sugar snack all over town.


Mama Bear in action

Koala Bear
Who could discriminate against this face?

I know I shouldn’t blog this…there enough people I know in person who read my blog that this might come back to the source, which really wouldn’t be very productive, but I just can’t hold it in. I haven’t been able to do anything since it happened but pace around the house and say, “A BABY! THEY KICKED OUT A BABY!” So let me try to tell the story while being a little vague to protect the (hopefully) temporarily stupid.

Last week Atti and I were at a playgroup. It’s one of those situations where the parents bring the kids, leave them with an attendant, and then go in the other room to hang out with the other parents while the kids experiment with a little autonomy. Many parents leave altogether and go run to the bank or something until the time is up. We signed up for the multiple week session, and when I signed up I talked to the lady about Atti’s disability. She assured me it wouldn’t be a problem, but I was welcome to attend with him to make sure.

Since then I’ve been pretty disappointed, but it was really important to me to make it work. For a bunch of reasons, but the biggest one was that it was recommended by his therapists that he spend time with typically developing kids to get motivated by seeing how they were able to move their bodies. It’s been challenging for me to see the gap between what he can do and what they can do, but I know I’m doing Atti no favors by sheltering him. So I sacked up and did it. In all the times we’ve gone, I’ve never had one of the teachers ask me about his needs. He just plays near the other kids, sits there for the instruction period, but is otherwise pretty much ignored. I tried not to think much of it because he had me with him and wrangling 20 two year olds is not an easy feat. It’s easy to ignore the one that’s taken care of.

Last week one of the attendants I really like was there, and she shooed me out the door. She promised that she would grab me if he needed anything but told me that I deserved a break and he could totally handle some independent play. I was a little hesitant, but I thought again about my instinct to shelter him, so I let him go without me.

I’m not even kidding – not five minutes went by and one of the other attendants was bringing him back to me. Kids often get brought out for stinky diapers, tantrums, separation anxiety, so I figured he just didn’t handle being alone very well. Until I saw my favorite attendant and she told me she got in trouble by the director. The director came in, saw Atti without me, and just said, “He can’t be in here without a parent.” and made another attendant take him to me.

We finished the rest of the lesson, but the more I thought about that the more it stung. I’ve never even met the director. She’s never even asked what Atti was capable of, she just must have known that on his chart it said DISABLED. I read the rules thoroughly. Not only is it nowhere in the rules that disabled children need a caretaker, it specifically states that they will make accommodations for children with mobility issues. If she had bothered to ask I would have told her that the only help Atti needs is a special chair to sit up in. He is perfectly happy to play lying down while the other kids play sitting. It’s not like I’m asking for something that would change how they operate.

I just continued to fume until the time was up, and on my way out to the car I caught up with my favorite attendant. I wanted to hear more about what happened before I went off on a tear. I could barely even say hello before she was all, “What was that, right? I’ve already called her boss and told him all about it. I couldn’t believe she said that, I was so taken aback I couldn’t even stand up to her.” A little while after I got home I got a call from the director’s supervisor and he was apologizing all over himself. I was so relieved that I didn’t have to convince anyone that what happened was wrong. He promised me that this “would be addressed.”

So in reality, I didn’t even have to make a big stink to stand up for the rights of my child. The people working there took care of that for me, and that’s probably the only reason we’ll finish out our time there. But I just can’t shake this…shock, I guess. I mean, the director is like a cartoon villain, right? She kicked out a DISABLED BABY.

I guess it’s hard for me to come face to face with the fact that Atti is going to face bigotry in his life. He’s so perfect to me, it’s hard to accept that there are people in this world who are never going to see him as anything but disabled.


Personality vs. Disability

Atti learning to walk
Atti in his little red walker. If it wasn’t rented I’d paint flames on the side.

Sunday’s are getting harder and harder around here. Atticus is now old enough to go into the children’s nursery and play with all the kids at church 18 months to 3 years old. Bear and I take turns staying in there with him because there are never enough people to go around, and with a roomful of wiggly bodies and wooden blocks, Atti requires full time attention.

The first few times we’ve taken him went fairly smoothly. He doesn’t exactly play with the other kids. He barely even seems to register that there are twenty other kids in the room. He’s just been busy scoping out the new environment and laying on his back while he entertains himself by staring at his hands moving in front of his face like he’s on an acid trip. Now that he’s a little more familiar, he’s starting to engage more and getting really pissed off to discover all the cool tricks the other kids can do that he can’t.

Yesterday he threw a screaming hissy fit until I held him up on his feet in a standing position. But since he can’t stand on his own, it meant I had to hold this 20 pound kid aloft for an hour.

When my arms finally gave out and I couldn’t hold him suspended any longer, he stretched out on his belly and threw a full body, back arching, screaming, head banging on the floor, tantrum. I just tried to not burst out in sobs as I caught his head before he smashed it in the carpet.

Interacting with typically developing kids is good for Atti. It’s good for him to get pissed off when he can’t do something he wants to do. It’s good for him to see these behaviors modeled so he’ll work towards them himself. But holy crap is it depressing for me. Just the ease with which these kids go from sitting to laying down, or the way they can manipulate a toy with both hands, the way they interact with each other and the leaders, it’s pretty hard to deny how much work is ahead of my guy.

When my turn was up and Bear took over baby duties, I had to run to the bathroom to have myself a little cry and wash up before I went to teach my teenage girls. I splashed some water on my face, touched up the runny mascara, and went off to class where I sat by my friend EmaLee who is the mom of the most adorable little red headed two year old. I told her how hard the last hour was for Atti and she said, “Oh my gosh, that was us during Sacrament meeting! Did you hear Erek screaming? Last week it was so bad I had to go into the bathroom to have a little cry!”

Atticus is now 19 months old, which would make him 16 months old adjusted age. Although we are rapidly approaching that 2 year birthday when they stop adjusting his age, hoping that any prematurity delay will have worked itself out by then. He has such a strong little personality, just as I expected from day one, and it’s hard to know what he can’t do vs. what he can but won’t do. He’s always been a reserved baby, stingy with his smiles, taking his time warming up to people but especially new surroundings. Maybe what looks like a delay next to another kid is just his little personality. Maybe instead of the tantrums being a result of frustration born out of his disability, it’s typical toddler frustrated at the world behavior.

I just wish I had any kind of an answer, about anything at all really. One of the other moms on the panel I did last month told me that a diagnosis of Cerebral Palsy is like a diagnosis of bleeding. It could mean anything from a gaping wound to a papercut, and there’s no way of knowing which you’re looking at. I would really love to know what Atti’s ultimate abilities are going to be. Maybe then I could relax and just accept what he’ll be able to achieve. But knowing me, I’d just be even more impatient for him to get there.


2009 Year of Pleasures #35

Baby and Dad Cuteness

Bear is such a good dad.


Separation Anxiety

I’m sitting here typing this in the house all by myself. It’s so quiet I’m having trouble being productive. I have had two back to back all day marathons of doctors appointments*, so Atticus spent last night up at Grandma’s and then ended up getting stuck there when my Sister in Law started showing signs of going into labor. Bear ran up to take baby duty over, Grandma and Grandpa divvied up daughter/grandbaby responsibilities, and the whole family is holding their breath waiting for this little girl to make her way into the world.

*more on that another day.

When Atti was born and in the hospital without me, the hardest part was the intense loneliness I felt. People often tried to comfort me by reminding me that I shouldn’t miss him too much since he wouldn’t have been here yet anyway, but that did me no good. If I had managed to stay pregnant longer he might not have been *here* but he was still with me. Being at home while he was at the hospital was just agony. There were times when I felt that separation so keenly it felt like a death.

Prior to my week away last month, the longest I’ve been away from him was a measly 16 hours. Once. An anniversary dinner and hotel stay and then right back to baby as soon as we woke up the next morning. Because of his disability we have 8 hours of nursing care allotted to us every month and I’ve never ever used it. Not because I’m some ridiculous martyr, but because those first few months of distance made such an impression on me that I can’t help but be greedy for him. I want to drink him. I feel a literal, physical pull on my heart when I’m away from him.

Atti has developed a few new behaviors as a result of our time apart. After talking to me on the phone every night, now he freaks out if the phone rings and I don’t let him talk on it. Which of course is just him listening to the other person while he licks the phone and breaths heavily. The receptionist at the dentist office didn’t seem to enjoy that too much.

He’s also gotten so much more motivated to be wherever I am. During the morning I usually set him in the middle of our main living room, on that red circle rug that is so ubiquitous in the photos I take of him, and let him roll around and work on crawling and play with his toys while I spend some time connecting with my online world. He’s developed into a really good independent player, so I usually had as much time as I wanted. Now I have twenty minute bursts while he inchworms his way from the carpet to my feet and slaps the base of my chair until I pick him up. After a few minutes of songs and snuggles I put him back down on the carpet and he starts the journey all over again. He’s getting to be pretty darn quick.

At therapy we’ve been making fantastic strides towards his walking skills. He spends a lot of time in a gate trainer, which is basically a high tech version of those walkers that people had to stop using in the 80’s after one too many babies took a tumble. He sits in a seat that supports his weight and then steps with his legs to make the contraption move on the wheels. He wasn’t doing much with the gate trainer prior to the trip, content to let his therapist move his legs for him. Now I’ll sit five feet in front of him and offer him kisses, and he marshals all the concentration available to him to make those feet move and get to his momma.

I wonder sometimes. If we get to have another kid, will I be so connected to them? Is this the magic of motherhood? Or did something happen in those first few days, standing there in my hospital gown, looking at him in his isolette, me fighting for life to get back to him, him fighting for life to get back to me. I remember standing there feeling this *intense* spiritual connection to him. Like, so intense it almost had mass, kind of connection. I felt like what we had been through together united us, physically, chemically.

I certainly hope I don’t have to go through such a gauntlet again, but today, it was totally worth it.

The Bird
Here’s a little something to help all the sap go down a little easier.


2009 Year of Pleasures #33

Love Bump

This picture blows the lid off of any pretense I may have cultivated that I actually maintain basic levels of personal hygiene, but I just couldn’t resist. Three day unwashed hair or not.

Atti is such a fun and happy little guy, he’s the world’s easiest kid to entertain. Boop his nose and he’ll laugh for days. We’re always inventing one goofy game or another that we forget about by the next day, but this game seems to have staying power.

I tilt my head way back like I’m going to sneeze, and then as I bring it forward I say “Loooooooooooooooove…” and then he brings his head forward to meet mine as I say “Bump!” and then we both roll around with the giggles.

“Love Bump!” “Love Bump!” All I have to do now is say the words and he’ll still collapse with laughter. Plus, I think this is a good trick to have in my pocket when he gets so big he doesn’t want to cover my face in slobbery kisses.


2009 Year of Pleasures #32

As much fun as last week was, I’m thrilled to be home goofing around with these little characters.


The newest member of our family

Everyone, meet Gizmo


He is a flame point Himalayan/Persian mix which is like a cousin breed to our Ragdolls.

We found him on Craigslist and the lady said he was eight weeks old. On the way home I saw a couple fleas on him, so we went straight to the vet’s to get him dipped. The vet took one look at him and said, “That cat is not eight weeks old. He is way too young for anything other than a bath and a flea comb.” So we did as we were told.

How Gizmo got his name
And that’s how he got his name. Doesn’t he look like a little Gremlin here?

Snuggle buddies
We felt strongly about getting a kitten instead of an older cat. This little guy has a big job ahead of him to fill the shoes of our sweet Lobo, and as a kitten we have the best chance of training him (as much as you can ever really train a cat) to be Atti’s best buddy and playmate.

Although he hasn’t really needed much training so far. He seems to be taking to his job like a natural.

Since Lobo died I’ve been so sad that he wasn’t here just as Atti started really discovering the cats. Now that he can commando crawl he’s been trying to chase them all over the house, shouting Kitty! Kitty! the whole way, but the older girls want nothing to do with him. Now he plays with little Gizmo and laughs his head off as the kitten frolics around him.

sleeping sitting up
Until he just runs out of steam.