Newsflash: In Vitro is hard!

Fertility Meds

Every time I think I’ve got the hard stuff of this year behind me and I’m ready to get back on the horse of regular life, the next thing comes along and knocks me flat again. We’re now at a year and a half of health garbage taking over my life – when it wasn’t outright threatening it – all with the hope of having another baby. This kid better be dang cute, that’s all I have to say. And, of course, it better exist.

I have gotten through the egg retrieval phase of IVF, which really really sucked. Like, bad. Over the years I’ve known hundreds of people who have done IVF and everyone said it was hard, but nobody really prepared me for exactly how hard it is. Granted, I am a medical marvel that will find every possible complication, but still. I had to put every single other thing in my life on the back burner and just do this. While Bear got Atti on the bus and raced home from work to pick him up, I laid on the couch watching old episodes of the Bachelor and moaning.

Every ounce of energy that wasn’t necessary for breathing was draining into my ovaries. I slept and slept and slept and I was still exhausted as my egg factories were kicked into hyperdrive, reacting to the oodles of medication I was taking every day. My belly was so swollen I looked like a waterbed, and I was covered from hip to belly button in giant bruises and puncture marks.

Since I’m one of those women who has pain during ovulation, and here I was hyper ovulating, it was not only exhausting, but PAINFUL. And even taking advil freaked me out, panicked I’d be causing harm to the eggs or risking the whole process. I used a heating pad to try and get a little relief but even then I was too worried about making hard boiled eggs to have it help much.

But all of that investment in energy paid off when we got news that there were over 30 eggs waiting to be retrieved. I went in for a quick procedure where they sedated me and then used a needle to aspirate up each of those little eggs. By the time I woke up they were already at the lab being joined by a sperm that had been individually chosen as the best candidate. I had visions of embryologists looking through their microscopes at a little sperm beauty pageant, the winner crowned and injected directly into the egg. Then we just had to wait and let nature take its course.

Of course, since I am, once again, a medical oddity, I had complications even from this little procedure. I had some bleeding that they couldn’t get stopped easily, which resulted in bleeding into my abdominal cavity. Apparently, I’ve learned the hard way, there is a major nerve that runs underneath the diaphragm and sends the impulse to move up and down to breathe. This nerve gets aggressively irritated by blood. So for nearly three weeks this nerve was driving me to distraction. The first night I felt like I was drowning, it felt like I couldn’t get my lungs to fill. Then as my body slowly, slowly, slowly absorbed the blood that was causing all the problems, I began to breathe easier, but I still had intense shooting nerve pain up into my shoulder. After a month of exhaustion making the eggs, I had another month of pain just trying to heal from getting them.

It was disheartening to watch the numbers go down at each stage of development – 30+ eggs retrieved, 16 fertilized, 12 grew to day 2, 8 made it to “blast stage” and on and on. I kept trying to remind myself that it didn’t matter how many embryos we had as long as we got a baby at the end, but it was terrifying to think of everything I’d put in to this process and know that it could all still go wrong at so many different points.

Just before we were ready to proceed to the implantation stage – where they put the embryos into my uterus and wait to see if a pregnancy is achieved – we got yet another twist thanks to my dang malfunctioning body. My hormone levels were out of whack and they felt it was best to wait before trying to get pregnant. So they took our little embryos and popped them in the freezer until I could get everything all cozy for them. I admit, I was crushed. This just felt one too far. After all the pain and exhaustion and sacrifice, to still not have it work out for us, I just about lost it. But once I could calm down and think it all through, I was kind of glad to have a little time to heal before launching into a pregnancy (knock on wood). This whole process has been so rough, it ended up being a good thing to be able to get myself back together before dealing with pregnancy symptoms on top of all the pain and exhaustion I’d just gotten through.

We’ve got four little embryos waiting for us in the freezer, and now we’re just waiting until I can dedicate another month to shots and daily office visits to see if all of this suffering of the last year and a half will prove fruitful. Hopefully August will be a lucky month. Hopefully those four little popsicle babies will actually make it into this world. And hopefully they’ll all be just like Atticus.

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Milestone

Atti Kiss

All of last year I felt like I was drowning. Whether it was the life threatening depression that turned out to be a med reaction to my endometriosis treatment, or the kidney stone that sent me to the hospital, or to finish out the year, freaking whooping cough, I was limping through just trying to make it through the day. In that condition I had to jettison every responsibility that was more taxing than breathing in and out and not dying. No more craft designing, no more blogging or Youtube-ing, no more contributing to the household. Bear has proven once again to be an exceptional partner and over the year he’s handled meals, organized help, and gotten Atti on the bus every morning.

As I’ve recovered, that last task was the one that loomed larger and larger in my mind. Slowly I started adding responsibilities back into my day. I’d do the laundry, I’d go grocery shopping, and then I’d fall ill again. I’d start to recover, blog through December, and then get sick all over again. But as I felt better and felt empowered to start picking the pieces up again, any mention of being responsible for waking up early to get Atti on the bus would send me into a panic.

You know that one thing that really isn’t that hard, but you dread it and so it grows and grows and becomes even more insurmountable to you? Like calling the credit card company or making the appointment or going to the DMV. It will just take a minute and then you’ll be done, but you can’t bring yourself to do it? And the more you put it off the bigger and bigger it grows until you just can’t see how you can possibly manage it? That’s how getting Atti on the bus became to me.

I should stop here and say – I know. This is nothing special for parents all over the place. And I am super lucky to have a partner who can take over for me for so long. But Atti also isn’t your typical nearly seven year old and getting him ready is A LOT more intense than shepherding him around the house as he dresses himself and eats his own breakfast. It’s a very physical labor that involves lifting and hauling and bathroom trips and trying to yank pants over his hips and putting braces on his legs and carrying him to his wheelchair and getting the heavy wheelchair full of kid down our super steep driveway without accident. It’s all the work you used to do with an infant, but that infant weighs 40 pounds. And is on wheels.

So it’s hard work that I wasn’t capable of for a very long time. Because I was too weak, because the most important thing governing my mental health is the amount of sleep I get and for a long time I couldn’t count on getting that by 7 am, and then because it had grown into this overwhelming and terrifying task loaded with shame. Because this is nothing special for parents all over the place, what was my problem? Because I love my son with ferocity and I couldn’t manage to do this for him. Because I was forcing my partner to carry all the weight of our family by himself. And that shame grew and grew until it threatened to bury me.

Today I got Atti on the bus. It was difficult, just like it is on my best day, but I managed it. And as I kissed him goodbye and he went through his morning goodbye call and response (“Ba-Bye! Have a good day at school! Mwah!” Repeat two times) I nearly broke out in tears. Because I did it. My fears of falling to pieces or not being up to the task didn’t come through. I have been beating myself up for months that I wasn’t able to do this for Atti, comparing myself to every other parent, and making the mistake that just because a task is common, doesn’t mean it’s easy.

I conquered this big shame covered complicated task and that means that I am officially back on my feet again. A little wobbly, but here.

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2015 coming in with a wheeze

She-Ra

In case you’ve missed my whining on facebook or twitter or instagram, I have Whooping Cough.

Bear thinks it’s hilarious. He keeps asking me if I need to eat citrus for my scurvy. Or if I need to watch for symptoms of Scarlet Fever. Of course, I would get this stupid old-fashioned illness that most people get vaccinated for and never even think about. Of course I would.

Just before Thanksgiving I had such crippling abdominal pain I couldn’t move. I actually had to have Bear call the ambulance and a bunch of dicky EMT’s stood over me and yelled at me to stand up while they rolled their eyes at me laying on the bathroom floor in shock. Luckily my ER doctor was an angel and ran every test and determined that I had passed a kidney stone and had a kidney infection.

And all that is after six months of suicidal depression because of a reaction to medication.

So basically, it’s been SUPER FUN over here.

I had hoped that the New Year would bring me a new lease on health, or at least back to my typical state of functional enough poor health, but here I sit, unable to change the laundry over lest I exert myself too hard and have a coughing fit. I am so over this bullshit.

In good news, we have a new member of our fuzzy family and she is taking very good care of me. Every picture I have of her is blurry because it’s taken from about two inches away while she’s sitting on my chest. She takes her role as nursemaid very seriously. Her name is She-Ra because she’s my little princess of power, and she’s another purebred Ragdoll, this time with lynx point markings. I love her and say the stupidest and most ridiculous things to her in the stupidest and most ridiculous voice. I wish I could blame the cough syrup with codeine, but it predates that.

Since Cheetara died, I have been missing my own little companion. One of the reasons we love Ragdolls so much is that they pick their person and bond to them. Gizmo is Atti’s cat, Jem is Bear’s, and my lap has been empty for years. Finally, FINALLY! I’ve convinced Bear that that can’t go on any longer. We are a three cat family. I think he just felt sorry for my stupid sick body.

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JORD watch giveaway

JORD watch
While I was sick I had to quit a lot of gigs. I left design teams, I returned products and money for posts I’d agreed to write, there were a whole lot of opportunities I had to let go of in order to get healthy. That’s hard on a whole number of levels. It’s hard to have your work suffer, it’s hard to feel like you’re burning bridges or letting people down, it’s hard to admit your limitations. Everyone was nice and understanding, but there was one company that went so far above and beyond that I have to brag about them at the same time I brag about their product.

Months ago, like maybe around Mother’s Day, the folks at JORD watches approached me about reviewing their product and hosting a giveaway. I went through my usual screening process, checking what the corporate values were, if the product was sustainable, and of course, whether I would actually spend my own money on the product. JORD is committed to using sustainable resources in the sourcing of their products, and when I first started learning about them they had just released a special watch design with proceedes going to the Pujols Family Foundation, a charity dedicated to those living with Down Syndrome and those in poverty in the Dominican Republic. The watches passed all my tests so I asked them to send me one that I could try out.

For real – it is indescribably gorgeous.

I love it. I truly love it. Wood is such a beautiful material that I love having something so fine to celebrate it. It’s not cold and it doesn’t trap my arm hairs like a metal band, but it also doesn’t sweat like a leather band. I wore this throughout a sweaty summer and felt just fine. It’s surprisingly light, and it’s so unique I get comments every time I wear it. It’s the best thing I’ve gotten in ages.


So even if all that happened was that I got a beautiful new watch I was totally besotted with and recommended it to you guys, it would be a successful partnership. But how the marketing manager I worked with treated me was what bumped this up from a post about showing off something pretty to an unqualified rave.

Like I said, everyone was nice. All the corporations wished me a speedy recovery, they all held doors open for me to come back, everyone was understanding and supportive. But they also have a job to do, so most of them went for the quickest resolution to our relationships. One company emailed me several times a week to make sure that we settled on square terms – not really easy for me to deal with when my health was such a concern, but never rude or unwarranted. JORD, however, just sent me support and well wishes and told me to take my time, they’d check back in around the holidays. They never suggested that I send the watch back – which would have broken my heart but they would have been well within their rights to do it. I never got an email that didn’t first address their support and concern for me, and by the way, could I just give them a timeline, and also, if they could do anything to help me they would.

I’ve worked corporate marketing jobs, so I know that one individual nice person can only go so far. That nice person has bosses with their own timelines and agendas. They want to know how their marketing budget is working out, where to put their future marketing dollars, and see some return on their investment. The fact that they set all that to the side, along with the concern that I’d never fulfill my agreement to them and just keep the watch with no marketing at all, meant that they prioritized respect for people over their business agenda.

How rarely does that happen?! As major chains make their employees come in on Thanksgiving, it’s getting harder and harder to find companies that make you feel like you’re putting your money in a good place. I’m so happy to recommend a company that makes a beautiful product made by good people.

wooden watch
And you can have one too! JORD has earmarked another of these beauties to give to one of my readers. Just leave a comment and I’ll pick a random winner on Black Friday. Good luck!

**Disclaimer** JORD gave me a watch to try but all thoughts and pictures and opinions are my own.

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Developments for Atticus

AtticusCan

In keeping with this crappy year, I am not the only member of our family facing medical problems. For Atti’s whole life we’ve been watching his hips to see if they would be damaged by the tight spasticity of his muscles, and that time has come. His hamstrings are so tight that they’ve pulled one of his hips out of its socket. It’s so far out you can actually tell by looking at him when he’s crawling around pantsless. It’s like his own muscles are drawing and quartering him. Sorry. Gruesome, but you get the idea.

Eventually Atti will need a total hip reconstruction. But before that can happen they need to get the spasticity under control. It wouldn’t do to reconstruct his hip only to have the muscles pull it right back out of socket again. We did a test last month for a muscle relaxant for him and it went really well, so later this week we’ll have a final consult about what the plan will be before having a surgery to implant a pump into his abdomen.

The Baclofen pump works in the same way as an insulin pump. It’s implanted in the abdomen, just under the skin, with the medicine going into the spinal cord to avoid the side effects you’d get if the medicine went to the brain in large doses. The dosage is fine-tuned to get the best results for each patient, and more medicine is filled by injecting through the skin into portals in the device. I’ve heard all the miracle stories, and during the trial it was obvious that Atti was relieved from discomfort and pain he lives with as part of his normal. It’s all going to be a good thing.

And yet, this is grieving me like nothing else. The thought of him having this hockey puck sized protrusion from his sweet little tummy… the thought that it might hurt him if we play Bongo Belly like we have his whole life…his sweet smooth little belly scarred up…I’m just so deeply sad.

It’s kind of arbitrary the stuff that really gets to us. He’s had so so many surgeries. He has scars, he uses devices other kids don’t, he’s already “different”, but braces and scars never bothered me before. I don’t know why this one makes me so sad. I have scars on my face, on my feet, and a giant one on my own belly courtesy of Atticus himself, and I never even think of them. It’s part of being a human and they don’t trouble me in the slightest. But I guess this is the straw on the camels back. I’ve been brave and pragmatic about everything else. This one I’m just going to face weeping.

Compounding my grief about the implant is the knowledge that we are running out of time. His entourage always used to talk about his future with the worst case scenario being “IF” he doesn’t leave the chair. It was expected he would walk, anticipated, planned for. Now I’ve seen them all subtly shift to “IF” he walks. It’s still something we’re hoping for, working towards, but it’s become the long-shot. I tell the doctors and nurses and therapists that he’ll be seven in February and universally their faces fall as they cast worried glances at each other, wondering if they’re going to have to break me the news. They don’t. I understand. 8 years old is the benchmark. After that the pre-pubescent changes begin and there’s no keeping up with them. His growth plates are closing, and so is our window.

Living a whole life in a wheelchair is hardly the worst thing that could happen. With more wounded veterans in wheelchairs, maybe by the time Atti is grown there will be more accessibility, or even new devices. My Father-in-law is always talking about how one day they’ll implant microchips in our brains and disability will be a thing of the past. It cracks me up, but he’s not crazy. If Atti had been born ten years earlier he and I would both be dead, so who knows what developments will occur in between now and his independent adulthood.

But still. It’s hard to let go of dreams. It’s hard to let go of that vision in your head of your child in a jersey or on the track. To accept the fact that life will be harder for him. There will be places that will be inaccessible. That he will know pain and have his body scarred. But all those things have been true for me and I wouldn’t trade my life with anyone. In the future maybe he’ll have a microchip in his brain, maybe he’ll have one of those walking exoskeletons, maybe he’ll be part cyborg. I really don’t care as long as he gets to have the fulfilling, independent life that is my heart’s true dream for him. This surgery is the next step there.

Both to independence, and to being part cyborg.

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Here comes the sun

SunThroughClouds

Hiya friends. So, it’s been a little while.

I have gotten so many wonderful loving emails and FB messages and blog and youtube and instagram comments, you guys mean the world to me. Truly. Thank you for thinking of me and reaching out and caring.

This has been a really really really rough year. Which means it was the best possible time to go on massive fertility drugs. I’ve been on Lupron three times before without incident, but this time, hoo boy. Was quite different. For the last five months I’ve been spending all my energy on trying not to kill myself. I know that sounds so dramatic and shocking, but it was. And I feel the need to speak it plain like that because when I would ask for help people would often blink at me, terrified. No one knows what to say or how to help other than, “Please don’t do it.” But I didn’t *want* to do it, my brain was trying to kill me.

After five months of white knuckling, relying too much on stressed out terrified friends and family, and finally finding a psychiatrist in my area, I ended up starting an outpatient psychiatric program. For six weeks, five days a week, six hours a day I would sit in classes and group therapy while my meds were tweaked and reactions monitored. It really did save my life, because you know when you watch those pharmaceutical commercials and they talk about the huge list of problems it causes including thoughts of suicide and you think, woh, the cure sounds worse than the disease. That was true.

For some reason, this time on the Lupron I went into the deepest, darkest depression I’ve ever known. I was tortured with thoughts of needing – not wanting, I did not want it – to die. I would hold Atticus as long as he would let me and cry and cry and promise that I was going to be brave like him. I would move from the bed to the couch to the bed and count it as a good day because I made it through. My psychiatrist put me on some new medications, and day by day as I got further away from the drug that so affected me, I clawed my way out of that depression with a teaspoon. Slowly, slowly, slowly, I got better as the last Lupron shot ran its course. And as I got better we lowered the medications again until now I’m back where I started from.

Med changes are always hard. For a person with Bipolar Disorder the reactions can be unpredictable. Obviously, since three previous times on Lupron were a cakewalk and this time things all went kerflooey. It was really invaluable to have structure, support, professionals, and peers to rely on while the medications did their thing and we figured out what my brain needed to stop trying to end me. Turns out, it needed to not be on Lupron.

Before I go on, I don’t want to scare anyone. Lupron has been a miracle drug for me. If you need it I’d drive you to the doctor myself. It’s just that due to changes in my brain chemistry, I had an adverse reaction. It happens, it would happen for me again, but I’ll get to that. It probably won’t happen to you. This drug rescued me from disability on four separate occasions. It’s a good thing.

Four weeks into my treatment I started having shortness of breath. I thought it was anxiety, so I took more anti-anxiety medications. I developed a persistent cough, I thought it was seasonal allergies, so I took that stuff. I felt this ball in my throat like I was choking so I thought it was GERD and took antacids. Nope. That globus feeling – the feeling like something is stuck in your throat – became so intense I was gagging and dry-heaving. Turns out I was allergic to the new medicine too. A fraction of a percent of people develop swollen glands and shortness of breath, and guess who was lucky enough to be in that percentage. This gal! I’m a medical marvel! If there was an olympic sport in medical oddities, I would be Michael Phelps.

Luckily by the time the symptoms got so intense I couldn’t take the medicine anymore, I was doing really well on my own. I was far enough away from my last dose of Lupron that my moods were stable enough for me to stop the medicine causing the allergic reaction, and after a few more weeks taking things easy, regulating my sleep, and slowly resuming my activities, I’m feeling pretty much back to my typical self. I did it.

I’m so grateful for the people who support me, for having access to mental health care, for a family who could make sacrifices and pick up slack to help get me through, and I believe that the best way I can repay all of that is by first, taking care of myself, and second, being honest about my challenges to help remove the shame and stigma so many of us feel about our mental health struggles.

I’m an accomplished, successful person, and I also live with mental illness. The truth is that most of us do of one kind or another, and if we don’t then we are definitely touched by a loved one who lives with a mental health condition. It is a fact of our modern time. Our brains have not evolved to be able to deal with all the stimulus of our day. We have to stop being ashamed, stop hiding, and recognize that these are physical conditions.

I made it through, and if you are struggling, you can too. If you need help, there are people trained to help you. Please reach out.

1-800-273-8255
National Suicide Prevention Lifeline

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Safe and Sound

Gizmo
We had a major scare and a miracle here this week.

I’ve been hanging on by my fingernails, riding the hormonal roller coaster, and I’ve gotten into a bit of a rhythm. I’ve discovered that if I take a sleeping pill at 8 and then take a 2 hour bath, I can actually fall asleep and get through the night. That’s really what it takes. After two solid months of weeping on the shower floor at 2 in the morning, I’ve cracked it.

But because I am hard headed, I keep thinking that I won’t always need that much caretaking just to fall asleep through the hot flashes and night sweats. So I decide to skip the sleeping pill, watch an extra couple of shows, and then I’m staring at the ceiling and hating everything. And I have to just stop trying to overachieve in the hormone endurance race and just do what it takes to get through it.

During all those long nights of thrashing around and exasperated sighing and whimpering into the shower tile, my fat boy cat Gizzy has been my companion. He’s not as demonstrative as my dear departed Cheetara was, despite all my work he won’t let me snuggle him while I sleep, but he is steadfast. When I can’t lie still he perches at my feet, keeping watch. When I finally collapse he saunters up the bed, plopping himself down between me and Bear like a jealous child trying to ensure there are no future children taking his place. And when I wake up in the morning, his fluff is the first thing that greets me.

This big dumb lunk is a longhaired gorgeous persian mix. I am always trying to hold him down to comb the mats out of his fur, and yet he won’t be deterred: he thinks he’s an outdoor cat. He wants to play outside with Atti every day and typically I let him. He never ventures far, he just rolls around in the dirt and suns his belly, and when I call them to come inside they both come grudgingly. But Friday night, Gizmo didn’t come in.

There have been a couple of other times when he went on a bit of a walkabout, so I tried not to panic. We live in an area where there aren’t many places he could go and not a ton of traffic to worry about, the real threat would be from other animals and I just wasn’t going to think about that. So I tucked Atti and myself in bed and told myself we’d hear Gizzy whining for breakfast in the morning.

But he wasn’t there. We checked with the neighbors, we drove through the neighborhood, and he wasn’t there Sunday. I was calling shelters and monitoring websites and he wasn’t there Monday. By yesterday, Bear and I were trying to resign ourselves to the thought that he was gone.

Yesterday a dear friend of mine had to say goodbye to her dog after a long illness and deterioration. I could barely offer her sympathy because I was working so so hard at being in denial about Gizzy. I couldn’t go there. I couldn’t face losing my sweet fat dummy in the middle of hormone hell, but there was nothing left to try.

Then last night I asked Bear to go out to the shed to grab some scrap wood for a craft project. After a minute I heard him scream my name in a way I’d never heard before. I thought I needed to call an ambulance. But instead of some bloody stump, Bear comes in holding a ragged and shellshocked ball of white fluff.

Somehow he had gotten himself locked in the shed. And he was trapped there for three or four days. In heat that was over 90 degrees, with no food or water.

We don’t know how he did it, we don’t even go over to that side of the yard very often so it’s not like we shut him in there when we weren’t paying attention, and Atti can’t get over there so it’s not like he did it. Maybe he found some little entrance he could get into but not back out of? Maybe the wind blew the door shut? But I don’t think the door was open in the first place? It’s a total mystery.

Also a mystery? How our sweet Gizzy managed to survive four days without food or water in a sweltering shed. I can’t even imagine what would have happened if I hadn’t needed that scrap wood. We never get over there, it’s nothing short of a miracle that it all worked out the way it did and Gizzy was returned to us, thinner, dehydrated, skittish, but whole.

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Sprout

Sprout

This was my Mother’s Day present from Atti, and it’s a pretty fitting metaphor for what I’m up to right now.

Remember when I talked about Therapeutic Boredom? And how being forced to slow down because of all the crazy hormones was forcing me to learn stuff? I had no idea.

I work really really hard at being emotionally healthy, I think that’s clear. And most days I feel like I’m pretty on top of things in that department. I know when to rest and when to push and what cues to listen to, and I make it a real priority. That’s how somebody can come from my kind of background and wind up as the person I am. A lot of really hard scary emotional work.

And other than what it takes to live with my mental illnesses, I feel like I’m pretty sorted. The stuff of my childhood doesn’t grieve me like it used to. Entire weeks will go by without me thinking about what used to cause me tremendous pain. I didn’t see a breakthrough coming because I didn’t think I needed a breakthrough.

But apparently I did. And forgive me for vague blogging again, but for once it’s too personal to blog about. I didn’t think I would have a limit, but what do you know? I do!

It’s actually all great news. Once upon a time I would have come up against something that brought the grief back and I would have taken to my bed for a week. This time, I actually feel better. I feel like a literal weight is off of me. I feel proud of myself for being strong and brave enough to face hard things, and proud that I can use the tools I’ve acquired to take care of myself. I’ve been meditating, and taking long baths, and seeking quiet and candlelight, and making myself as physically relaxed and comfortable as I can be so that I can do the hard interior work of facing the worst, darkest, most terrifying corners and scrubbing them clean.

This might sound twisted, but I’m actually enjoying it. My body is not healthy enough to let me use it to feel powerful. No marathons or unassisted births for me. But this? This feels powerful. I am healing myself with the power of my own mind. I am sorting through old scripts, beliefs that don’t serve me, things that other people believe about me that I don’t, casting them all away, and watching as it’s so effective I feel it physically.

I don’t know why it is I seem to need hard horrible times to learn lessons, but I do. At least I can be grateful I’m learning the lessons. Maybe then I’ll never need to go through this again.

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Atti goes Boom

Atti in the fountain

Atti and I were out running errands together, and like any six year old boy he was testing my patience. We were in Bath and Body Works picking up some presents for Bear’s staff, so I had him in his wheelchair and had the unenviable job of trying to shop, listen to saleswomen, keep an eye on my kid, and block the doorway against a sudden sprint to the parking lot. Imagine a six year old with the bodily experience of a toddler. That’s what I’ve got. Experimenting with independence, learning consequences, asserting his will, but with twenty extra pounds and wheels.

One of Atti’s early therapists drilled it in to me that I can’t treat him like he’s made of glass. His body is no more vulnerable than anyone else’s, he just can’t control it. In fact, he’s actually MORE impervious to pain than a typical kid because of the way his nerves don’t talk to his brain. This kid bounces.

So it’s a running joke with all of my mom friends that I blithely sip my cocoa while they’re nervously hovering afraid he’s going to fall off his chair. In the words of that therapist: “:shrug: Then he’ll learn not to do that.”

Of course, the rest of the world didn’t get that memo.

At Bath and Body Works I was loading the car while Atti was in his wheelchair on the sidewalk. I was talking him through watching where he was going, looking out for the curb, being patient until I could help him, but like most kids, he didn’t listen. He saw the wheelchair ramp and decided to try and do it all by himself, but one of his wheels went off the curb and he fell forward into the parking lot right on his little face.

Experienced moms know, this sucks. When you’re talking skinned knees and not blood or broken things, it sucks way more for mom than it does for the kid. You have to console your child, you feel the typical “I let my baby get hurt” guilt, but since it’s just skinned knees and everyone’s fine it becomes one more pain in the neck hassle you have to deal with in your day. If it was serious you’d drop everything and run to the doctor. But since it’s not serious it’s just aggravating.

But when your kid is in a wheelchair, the world thinks that every fall is serious. When Atti fell over he started crying, but I knew it was an angry cry, not a hurt cry. So because the day had already been long and there were still four more errands that had to get run I was frustrated. And then I saw the people running and I had to put on my show for the public. People were sprinting from across the parking lot, a lady ran out of the store with her basket she dropped in the middle of the sidewalk, all because a kid fell from a sitting position onto the ground. The wheelchair makes it look scary.

Let me pause here in case I sound totally callous. Atti’s fall was roughly the equivalent of a kid sitting on a swing not in motion, and falling out onto their stomach. This happens on playgrounds everyday so frequently that notes don’t even get sent home about it. I asked my mom friends what they do in this situation and they said, “I say, ‘whoops! hop up!’ so they know it’s no big deal.” I’m talking your typical kid learning how to use their body and not paying attention kind of fall. And since Atti fell in his chair, the chair takes most of the impact.

But to people who don’t see wheelchairs every day, it’s terrifying. So then it becomes about their emergency, not my son’s.

Atti was pissed off that he fell over. He was mad he didn’t navigate the wheelchair ramp by himself, but he was WAY MORE upset that a crowd of people were standing around gawking at his humiliation. So he’s screaming and crying because he’s embarrassed, but the crowd of people think he’s crying because he’s hurt and want to help the little disabled boy and his mom, and I want to tell them all to shoo and let me tend to the hurt feelings of my little guy. Atti won’t stop crying until they go away, and they won’t go away until Atti stops crying.

In that moment I feel the burden of representation. That’s my show for the public: the educator. The charming and approachable advocate of disability. The adorable little boy who makes disability not so scary. And in that moment when I want to tell them all to go away I think about my little friends whose disabilities carry disfigurements that make the world not so kind to them. I think of the kids without parents who can force a path in the world for them. I think about all the people with disabilities who are invisible to the rest of the world, who are pushed aside, who are unwelcome in public, who are vulnerable, and I think that doing a little education is not such a burden.

So while my child is crying I’m explaining Cerebral Palsy to the crowd. I’m helping them understand Atti’s speech and that he’s telling us how mad he is he fell on the ground. I’m showing them his chair and how lightweight it is. And inside I’m torn between wanting to respond to these people’s kindness with kindness of my own, and just shoving them aside to tend to my child.

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Feeling Rebirthed

Easter 2014
We had a quiet Easter over here. Just the three of us with a no-frills ham dinner, matching clothes courtesy of Old Navy so I didn’t even have to work at that, the first hour of church and then a visit to Bear’s work to check in on the patients and spend the holiday with his work family, then home for a nap. It was exactly the speed I’m running right now.

Last week I went in to get my second shot of Lupron and they couldn’t give it to me. The medicine got recalled and they didn’t have any new stuff. They seemed to feel that the dose I got didn’t apply to the recall, but I’m wondering if that’s why things have been so different this time. Why my emotions are on overdrive and completely disconnected from my brain, why I’m still feeling pain a month in, why I’m still living with the worst of the endo symptoms and the worst of the Lupron symptoms at the same time.

But all this time being forced off my feet has been so good for me in so many ways. I’m a big believer in what Joyce Carol Oates calls “Therapeutic Boredom.” That it’s only in the still and quiet times that healing can take place and discoveries can come to light. I’ve made a whole bunch of changes behind the scenes that are too inside baseball to bother talking about since they won’t change much about the blog but change everything about my workload. I’ve spent time examining my goals to see if what I’m spending my time on is what I really truly want out of life or if it’s where I’m spending my time because it’s “enough” for me. I’ve asked myself if I’m doing what I really want to be doing or if I’m doing things as a distraction from taking the risks I really want to be taking. And I’ve found some new horizons for myself.

Like I said, all this vague blogging won’t change a ton here, and it’s all too early to discuss even if it would, but I’m writing about it because I feel like I’m not alone.

I worked at a M&A firm back in the early 2000’s, and when the economy dropped our work dribbled away from a crazy torrent to a whole lot of nothing. My boss at the time called me into her office to talk to me about how much time I was spending on the internet and she said something that’s stuck with me, “We have to be careful not to let the work expand to fill our time. We have to let our time expand our work.” It was a great reminder then to use our slow time productively and to work just as hard in the slow times as I did in the fast times. But I also think about it a lot in my motherhood.

I can get so obsessed with getting a recipe right that I go a whole week without making dinner for my family. I can take something like a Halloween costume and make it as time consuming and important as the Oscars. I can have a big idea or a big dream and put it off for months or years while I work on holiday decorations or printables. None of those things are invalid or wrong by themselves, but they are a distraction if they’re not what I truly want for myself.

So with this slow down I’ve been forced to take, I’ve been asking myself some hard questions and reshuffling my priorities. And then a funny thing happened. I rediscovered my love for what I’ve been doing all along. I longed to come back here and talk through all my thoughts, I felt my creativity revving back up, but I also found the drive to tackle the big dreams. I had just let things get out of order and putting everything back where it belonged helped me rediscover my love and enthusiasm for all of it.

So hopefully soon I’ll have the big dreams far enough along to share, but in the meantime I still have some great things coming up. I’ve finally begun tackling the Master Bedroom makeover I’ve had as a crafty goal for more years than I can count and I have some pretty amazing results to share with you. And a whole new attitude while I do it.

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