DISASTER!!

If you take bright red wool, a white corduroy background, and highly acidic cat pee, guess what you get.

Tree skirt DISASTER!

I had *just* finished the binding on my beaded tree skirt, piled it on my desk while I toyed with the idea of buttons, and one of my soon to be killed cats decided to make themselves extremely comfortable.

I think a cat skin coat is going to be my new summer accessory.

Tree skirt DISASTER!

I soaked it in my fancy embroidery soap, ran gallons and gallons of cold water over it, and only succeeded in spreading the hot pink around.

Tree skirt DISASTER!

Looks like I’ll be starting this one over. After I stop sobbing and extricate myself from this gallon of ice cream.

Because this is just how my life works, this comes on the same day that we got bad job news for Bear. I shouldn’t blog this, but, anyway…bad news.

Today is one of those bitter days.

Atti’s teething about four teeth at once, he’s had a low-grade fever on and off for nearly a week, and I cannot do anything to make him happy.

In the past couple of weeks it seems like a little lightbulb has turned on for Atti. All of a sudden he’s interacting with us so much better. He can start to communicate with us, to follow simple instructions, he’s aware of so much more. Which is of course a good thing, but it brings some big fat complications.

Now that Atti is aware of what he wants to do, he’s also aware of what he can’t do. I keep hoping that it’s just the teeth, but lately when I put him down for tummy time he just starts throwing a fit. Instead of working and muscling his way over to a toy, he starts to cry and bangs his head. And instead of my sweet, peaceful, content baby, I suddenly have a very bitter little man.

I keep trying to remind myself that in parenthood, everything will pass. For good and for bad, everything will pass. So maybe I’ll be in for a rough few months, but I shouldn’t let myself think that this is how it’s going to be forever. But boy is it tempting. He’s more dependent on me right now than he even was as a newborn. At least then he would sleep, or I could pop him in his sling. Now I have to lug around a 20 pound sack of flour, all day long.

When someone you love is going through therapy, there’s a standard pattern of behavior. They work and work and work and seem to get nowhere, so you agonize that they’ve reached their limit and whatever ability they have right then is all they’ll ever have. You worry and grieve about their options and what this means for you as a caretaker, and just when you’re ready to give up and settle in to what your new life will look like, they have a breakthrough. The elation you feel is more than can be described in words. The clouds part, heaven itself seems to shine down upon you, you weep with gratitude and pledge to always remember this feeling and never be so pessimistic again. You commit to celebrating achievements and to stop focusing on limitations.

And then time goes on, they work and work and work and seem to stagnate, and no matter how big the previous breakthrough, no matter how glorious you felt before, you will still eventually face those feelings of hopelessness again. You will still have visions of yourself dealing with this same problem 10, 20 years from now. You still count up all the things you’re sacrificing.

And then they have another breakthrough, and the sun comes back out from behind the clouds.

The sun will shine again for me, I’m just getting tired of living in this gloom.

I love you guys…

How can I even begin to thank you guys. I cannot express how wonderful it is to be so thoroughly cheered on by old friends, new friends, readers, and the whole of the internet. It is a powerful feeling to have all of you behind me and I really do feel the strength of all the prayers and good thoughts and hopeful intentions. Please forgive how horribly behind I am in my emails, but believe I treasure every one.

We’re coming to terms with things over here, and a couple of my oldest and dearest friends managed to say some things that really made me discover some faith in myself. Crysta rewrote that whole paragraph I wrote about Atti’s strength to become her speaking about me. And dear dear Jana reminded me of how I have tackled things in the past. I thought it was so funny, I do so love my moment of drama, but now it’s time to get down to business and find that action plan Jenny pointed out.

I’ve been thinking pretty much non-stop about what the doctor has said. I really wish I could just write her off as a quack, or hate her somehow so I could work on proving her wrong with all the spite in my heart. But she’s not a quack, and I’ll adore her forever. I’ve decided that it was her job to convince me of the odds against him so that I would be absolutely ferocious about pursuing treatment. I can’t afford to waste time hoping that it’s just a phase or thinking he’s just a little bit slow, I have to understand down to my core just what he’s fighting against so I can give him the support he needs. Her job was to scare me into action.

But I also think that she just doesn’t know this kid. The other day I was firmly entrenched in my couch bed, eating coffee ice cream and ignoring the shower for the mumblemumble day in a row, and I just had no emotional resources to be an interactive parent. Normally when it’s Atti’s tummy time I keep a pretty tight reign on him. He likes to roll over and hang out on his back, so on a regular day I stay close to keep flipping him back over. During my pity party I just let him go. There were toys scattered all over the floor and I watched as he rolled from one end of the carpet to the other, pulling himself along like an army commando, huffing and puffing and scooting along to get to the toy that played the music.

He’s going to do it. He’s going to figure it out. I just have to find a way to give him the freedom he needs, and the support he needs at the same time.

I’ve been hiding from the internet

I guess I need to find a way to accept this. Atti has now officially been diagnosed with Cerebral Palsy.

We knew he was at risk since before he even left the hospital. Sometime before he was full term he didn’t get enough oxygen to his brain, and spots of damage were formed. It could have been because he was so tiny that his body was just incapable of getting the air where it needed to go, it could have been one of the five times that he pulled the respirator out of his throat, we’ll just never know.

At the time the doctors told us that they expected it to be mild and that he would most likely be able to retain function. We had another visit with his Neonatologist on Wednesday and she said that it was now officially CP and no longer just your garden variety preemie delay, and that it seemed to be manifesting more severely than previously thought. Her best guess now, based on statistics, is that he may eventually walk, but probably only around the house. He’ll probably need a wheelchair. He may have trouble eating and speaking, drooling, using the bathroom. There’s just no denying it anymore. My sweet miracle baby is going to spend his life fighting this disability.

I am very much of two minds about this.

Part of me knows with a deep conviction that he will be able to surprise all the doctors. This is my kid. He is stubborn, he is willful, and he is not going to be content to not do something he wants to do. This is the same kid that set hospital records by ripping his respirator tube out five times before he was even old enough to have hand eye coordination. This is the kid that allegedly has limited fine motor skills, until he wants to get that eye patch off. This is the kid that will do anything it takes to make music come from whatever is in front of him. I cannot imagine that this boy will be content with doctors expectations and not drag himself towards more by sheer force of will.

The other part of me is paralyzed with fear. But more for myself than for him. Motherhood is demanding at the best of times. I was just starting to feel like I was figuring this out, even with therapy every single day, even with his dependence, I was getting a routine down. But now. Oh dear.

Suddenly this requires even more of me than before. And I’m realizing that all the plans I had for myself, all my own dreams and goals, are now going to have to go away. We’re going to have to double up on Atti’s already extensive therapy, and now instead of having everyone come to me, I’m going to have to take him all over the county to his appointments. All of the therapists I’ve grown to love so much are going to move on to other cases and I’m going to have to start over with a whole new crowd. This all just got a whole lot more serious.

No parent wants to see their child limited. Even in the best case, if he does manage to walk and talk, there are still doors that are now firmly closed to him. He’ll never join the military (Whew!) He’ll never be an athlete or fly a plane like his dad. But we’re realizing that every parent eventually has to come to terms with their child’s limitations. Every child has talents and inclinations, and limitations of their own, and every parent has to eventually accept that their baby is not going to live the life they had scripted for them.

I see it all the time in my work with the teenagers at church. In the teenage years kids begin to choose their own path and it is so hard for parents to sit back and watch. To watch as little Johnny shows no interest in whatever life his parents wanted for him and decides to pursue fillintheblank. Maybe the parent had dreams of Harvard and the child does not enjoy school. Maybe the parent wanted a professional basketball player and the child tops out at 5’3″. It happens to everyone. And they all have to accept it.

We’re just having to accept it a whole lot sooner than most people.

Now if you’ll excuse me, I’m going to go crawl back into my nest of blankets on the couch and resume my deep deep depression.

Coolest Video Ever

Architecture in Helsinki – Like it or Not

Architecture in Helsinki – Like It Or Not from helsinkids on Vimeo.

Found on Best Week Ever.

Is this the coolest thing you’ve ever seen or what?

We just got back from another visit with the eye doctor, and Atti now has to get his eye patched for four hours every day. Which basically means I have to hold the eye patch over his eye for four hours every day. *whimper*

I think I need to watch the video again to cheer myself up.

Computer update

Two weeks and counting, and the guys at Fry’s haven’t even touched the thing yet. We went in on Thursday to check up on things and they said it was still near the back of the line. We were at least able to convince them to order the new hard drive ahead of time so it didn’t have to wait around for parts to arrive when they were finally ready to pay it some attention.

This current Fry’s guy also warned us that the information is almost positively lost. We called the super powerful data retrieval folks that Fry’s referred us to, and they’ll happily check things out for us. It will only cost us somewhere between $800 – $1800.

That’s kind of a lot of money. Even for something as priceless as baby photos. Thank goodness I’m a blogger and we still have all the photos I’ve shared. We lost a lot of his pictures, but between flickr and costco.com saving all the photos I’ve sent off to print, we have the best ones. So we’re not going to bother calling in the super-experts, which means what isn’t on the external hard drive is gone.

This has been such a colosal bummer for me. My craft book is probably safe in some version, but who knows how much I lost. All my podcasts that keep me sane and sleeping through the night, all my work. And of course the pictures.

We’ve also lost all the emails and contact information we ever had, so if you’d like a Christmas card this year, please email me your info (and any info you may have for someone else we know) to either tresa at reesedixon dot com or tresa at tresaedmunds dot com .

I will continue poking along on this ancient laptop and trying not to have daily panic attacks over how much I’ve lost and how cut off from the world I am.

A typical week

I am so very very behind in what I have to share with you. I’ve been working on the house like crazy, I have all sorts of projects and cooking and what not, and it’s all just sitting in my little notebook on my desk. I’d love to tell you about how my Obama/Biden bumper magnet was stolen at the Priesthood session of conference and how it is one more example of how torn I am right now between what I feel is right and the community I belong to, that I feel so isolated and how exhausting it is to always be told how wrong you are, but do I have time to put those thoughts together in a way that appropriately reflects the nuance of the situation and the loyalty I feel towards both groups? Of course not. Here’s why:

Monday: Call the ophthamologist office at 8:00am to try to get an appointment. Call at 8:30, miss out because all the appointments are booked through the year, try again next week. Drive an hour away for an 11:15 flu shot and an RSV vaccine shot, then spend the whole rest of the day dealing with a kid who’s pissed off he just had to get two shots.

Tuesday: Frantically straighten up house. 10am Infant Stimulation Specialist comes over to play with Atticus and check up on his development. Cram some food in his face, but not yours, 2:30 the Physical Therapist comes to put him through his paces. Spend the rest of the day dealing with a kid who’s pissed off he had to have two workouts today.

Wednesday: My one day off all week. Work on Atticus’s halloween costume, put his costume on the ironing board giving him just enough time to launch himself off the desk and land on his belly on the floor three feet below, splitting his lip and bashing his chin. Spend the rest of the day dealing with a kid who’s pissed off his mom let him fall on his freaking face.

Thursday: Do all the normal kid routine, but be dressed, lunch packed and studied for a five hour night class (more on that later) in time to drop him off at Dad’s office at 4. Deal with a kid who’s pissed off his mom is ignoring him all day.

Friday: 12:30 appointment with the audiologist who is concerned enough about his hearing to want to do yet another appointment since he didn’t respond to all the auditory cues. Because he’s just a particularly willful kid and he never responds to what you tell him to respond to, not because he can’t hear. Race back home in time for a 1:45 appointment with his Occupational Therapist. Spend the rest of the day dealing with a kid who’s pissed off he’s had a crappy week being poked and prodded and bossed around.

But at least he gets a nap. Oh what I would give for a nap.

^*%*&#$ Computers!

I was working in my studio today, happy as a clam and whistling a little tune, when all of a sudden I started hearing this unholy grinding noise coming from another room.

After ruling out anything easily fixable, I wandered over to the (brand new) computer with my throat closing with every step. I have such irrational panic about the computer. I have so much of my work on it, all my designs and pictures, Atti’s whole life worth of pictures, music and podcasts I listen to all day long, all my phone numbers and addresses, my whole outside world. I don’t spend a lot of time with people in the flesh. I have therapy appointments of one kind or another with Atti every single day. On top of all the hardships of this year, I have no social life outside of the internet. The internet is what allows me to function happily in my hermit existance.

Hearing the sound of gears grinding growing louder and louder the closer I got to the computer sent me panicking nearly to convulsions. The computer was completely frozen, so I turned it off and turned it back on, except it wouldn’t turn on. When Bear came home we rushed over to Fry’s hoping it would be a simple fan problem. Maybe all the cat hair I swim through made it’s way inside and is jamming up the works. No luck. The noise appears to be a catastrophic hard drive failure.

The computer’s under warranty, so we’ll get a new one with no problem. The issue is that they’re not certain they’ll be able to get anything off of it. At all.

No pictures, no patterns, no programs, no podcasts, no pictures.

Bear is confident that everything will work out OK, but what really hacks me off in the moment is that I had been working on the pattern for a stuffed black cat I made LAST YEAR that I was so excited to share with everyone. So now even if they manage to get anything off of it (and Bear is literally calling the people who retrieve data for the US military to make sure they do) there’s no way I’ll get it in time to share the pattern I’ve been sitting on for a year. Plus I’ll have to live without podcasts for two weeks, and surf the internet on an ancient laptop that takes five solid minutes to open a page and isn’t even compatible with flash.

I realize this is the very definition of a first world problem. But it’s the first world problem that hits me the hardest in my soft spots. Wanting to be productive, creating roots and commemorating branches, treasuring the life we’re creating together, overcoming the anxiety I struggle under….this darn computer is a symbol of my whole life and all my efforts, and it’s broken. It’s hard not to extrapolate that into meaning more than it should.

Major Milestone

With all of the weird, “he’s seven months old, but they count him as if he’s four months old, but he’s behaving developmentally as if he’s three months old, or five months old, depending on who you talk to and the mood Atti was in when he was being evaluated” confusion, I’ve been a terribly neglectful mother in recording all his first’s.

And so many of his firsts were so gradual I didn’t realize he was doing them until he’d been doing them for awhile. Now he’ll grin at me, but for so long he’d just give me a little sideways smirk where I’d wonder if that counted as the real deal or not. I still don’t get a full on giggle out of him, more like a series of grunts. Does that count? Or does it have to be like you hear on TV?

Today he hit a milestone that is unmistakable.

Today he had his very first blowout, leaking down the legs, spread all over the two blankets he was on, don’t even try to clean up just strip him down and throw him in the tub, could you just hold still already so I don’t spread the poo around even more, diaper.

Why couldn’t he have been delayed on this one?

I’m a pratfall away from being Lucille Ball

My eye is on its way to recovery now. I have to goop it up every few hours with antibiotic ointment to try to clean up a very dirty kitty scratch. The offending cat is now in my lap trying to make things up to me. He’s very repentant.

I wish I could say that this is an unusual occurrence for me – this confluence of disasters that make everything go wrong all at once and leave me huddled in a corner somewhere waiting for the day to end. But it’s not. This happens to me all the time. As soon as one unfortunate thing happens it’s pretty much an avalanche.

Nearly every week I go for tacos with my sister-in-law Mari. We meet at Rubios and then we usually run a couple of errands nearby. The closest Rubios is in a parking lot with Target, Ross, Old Navy, and Michaels, so there is never a week when we don’t have to go to at least two of those places.

A few weeks ago I got to lunch late because I had about forty errands to run and I was trying to gather everything together to do it all at once. Coupons for this store, the paper to match for that project, the package to go to the post office, blah blah blah. By the time I got there they were nearly done eating. I ordered my food and started bolting it down when Atti started fussing for some more lunch. I reached into the diaper bag and realized that in my rush to get everything together and get out the door I left his bottle on the kitchen counter.

As Atti got more and more upset and started screaming louder and louder, I grabbed all my stuff up, abandoning any plans of efficient errand running, and hurried to get the car loaded up and him home to his bottle. I was struggling with the keys in my hand while I was trying to put his car seat in its base, so I threw the keys into the front seat, got him strapped in, and shut the door.

Only to discover that I had somehow hit the lock button in my struggles with the seat, and I had then locked my starving baby in a black car on a 95 degree day.

I lost it. I completely lost it. Luckily Mari was there to handle calling AAA, and her mother-in-law Virginia was there to keep me from going completely Mama Bear and ripping the door off with my teeth. The lock guy came out in a hurry and got the door open with no problem, and we discovered Atti sleeping sweetly.

I was really shaken up by the whole experience, so I abandoned all my plans of efficient errand running and raced home to smother my baby with love and cry about my failure as a mother.

The very next week at Taco Tuesday, we were shopping at Ross when Atti decided he had had enough of his car seat and started fussing. I went to the checkout, but it was Ross after all, where you get bargain prices at the expense of waiting in line for two days while one lone checker tries to do everything herself. After waiting in line for 20 minutes, all while trying to keep my baby calm, I was totally flustered and just wanting to run to the car. I started to wheel my cart out the door only to get stuck on something. I was fighting to push the doors open with the cart and get out of there, running over my own foot in the process, until a security guard came over to hold the doors open for me. Only then did I realize that my cart had one of those metal poles on it to prevent the cart from leaving the store. The professional security guard didn’t notice it, and instead watched as a sweaty lady with a baby tried to fit a round peg through the square door hole. I finally realized what was going on when I tried to figure out what it was stuck on, and the security guard brought me a new cart that I could actually wheel out to my car. Muttering a few thousand curse words under my breath, I finally got everything loaded up, brought the cart back, and got on the road.

Somehow, despite all the excitement, Atti had once again managed to fall asleep, so I decided to push my luck and go to Target. I leisurely strolled from aisle to aisle, went through checkout actually managing to remember to bring in my reusable shopping bags, only to discover that my wallet was missing.

I emptied the diaper bag, I searched the car, I went back to Ross, it was gone. By the time I got home someone had already charged a couple hundred bucks worth of art supplies on one of my cards.

Being the hyper OCD person that I am, I have a list of card numbers and phone numbers handy, so canceling cards was no big deal. No, the crappy bit is all the other things I had in my wallet. My Drivers License I have to go in person to the DMV to replace. My temple recommend which involves two different appointments. My punch card to the yogurt place that was almost full up. The $100 gift card to baby gap my sweet aunt and uncle and family sent to me. The complete list of Martha Stewart glitters with the ones I already own crossed off. All those new business cards I just made. Stupid jerks.

Anyway, I think you can see now why I so rarely leave the house.