You Can Do Anything!!! by mommy Shana

I haven't posted on this blog for a while.  I have been very busy (as stay at home moms often are) and have sort of let your mommy Jess take over :)  Recently I was reminded of why I should post more often.

Recently (about 2 months or so ago) I was verbally attacked by other moms on a Facebook support page (mom’s with hemiplegic children) for a comment I made, and realized just how far we have yet to go.  To sum up the exchange, it started innocently enough, with a simple question about riding a tricycle.  Greta has been insistent on riding a tricycle like her twin brother has been able to for more than a year now.  We practiced every day, at her request.  I bought about 5 different tricycles during a 3 month period of time of various designs, types, and modernity.  I tried lots of "tricks" and prior advice I'd gotten from others.  Nothing worked.  To be clear I don't care if she EVER learns to ride a tricycle.  I'm pretty sure one can succeed in life without mastering this skill.  However, Greta cares, and thus I never stopped her from trying.  I researched online, did advance searching of other blogs looking for success stories, I asked professionals: no one had an answer.  So I made a stupid decision, and asked other mothers on a support group FB page for children with your particular type of CP if you could ever learn to ride a tricycle.  Framing it as whether it was one of those things that just took a lot of time to learn (like walking, sitting up, rolling over, etc.) or not possible.  I did get a few helpful responses, but not very many.  Instead I received a number of posts telling me not to make you practice so much (let's chalk these up to poor reading comprehension as I specifically stated this was something you were very interested in), a few that said I should NEVER tell you that you can't do something (let's thank these folks for creating a generation of children who believe they can do anything, http://www.hulu.com/embed/xOR__JDNXqDVbyr2vZEdzw ), and then it happened.  I responded with a "thank you for the tips and advice, however there are some things hemi-kids can't learn to do and I wasn't sure if the tricycle thing might be one of them.  As a family we are ok with the fact that Greta may not be able to do or learn some things".  Uh oh…this evil mom was about to be destroyed. 

Angry comments began piling up.  Likes for each of the comments where reaching the double digits.  Mothers began telling me how wrong I was, how wrong my parenting was, and how this wrongness was going to destroy your life.  Bragging began, with mothers ignoring my post but noting their hemi-kid did learn to ride, but only because they (as good mothers) believed in them.  There were so many ways to respond to my post and even to disagree on how best to learn would have been supportive…the um…point of the page.  Instead I got back-handed shaming like: “of course we NEVER tell our child they can’t do something”, and “we make sure to tell our child they can do anything their able bodied brother can do” and worse “I think it’s important that you not tell your child they can’t do something.  Research says that it’s bad.”  Any attempt I made to elaborate just made things worse.  I tried to explain, noting that "maybe telling our children that they can do anything may not be such a great idea, maybe acknowledging that a child with or without hemiplegic cerebral palsy could only do their best might be better overall", only fanned the flames.  One mother questioned "who the hell I thought I was", others made fun of my attempt to integrate some research I had done as part of masters’ coursework that supported my idea by calling me "uppity" and explained they didn't need "some fancy pants degree" to know they were right.    It ended with one mother exclaiming that it was FAITH that helped their child, and that you Greta, with your faithless parent, would never learn because I had no faith in you. 

In the end I learned that only 3 of the 20 or so children the posts referenced ever successfully mastered the tricycle.   So I didn't quite get the answer I was looking for, but I got the response that I needed.

Now I know what you're thinking, I should just blow off anyone who used the word "uppity" and call it a day.  But instead I was upset and sad, I felt horrible for having been scolded and wondered why so many mother's felt it was not only acceptable, but their duty to call me out as a bad mother.  Once the irrational and over the top insensitive comments, based on little evidence and lots of fear, had sat for a few days I was able to think clearly.  I decided these women were FULL OF SHIT.   Yes, I said it, full of shit.  How's that for uppity?

Even I know I can't do certain things because I have an autoimmune disease that makes some things impossible.  Hell, there are things I can’t do simply because I’m a short woman.   I'm relieved that I understand my limitations, and then focus on my strengths and use them to help me succeed.  Honesty is something I value and think as a society, moves us FORWARD.  However, being a person who refuses to hear the voice of anyone else, who refuses to consider other points of view, is in fact, disadvantaging themselves and their child.  I listened to their side, I understand deeply why it is so alluring to tell your child they can do or be anything they want.  But when I see my child crying, sweating, dragging  her left foot in the grit at the edge of the curb as her brothers race past effortlessly, I think out of respect to my child, honestly acknowledging that this might not be possible is the most ethical and fair (but hard) thing to do.  Did these mothers not read that I had purchased 5 different tricycles?  Could they not picture me at one dingy thrift store after another scouting for the perfect design to make you fly?  Did they not understand how much it hurt to toss each one into our basement to grow cobwebs and sit like a skeletal reminder of what we were unable to accomplish each spring, summer, and fall for almost 2 years?  Maybe not, but I'd like to think that regardless of our "fancy pants" differences, we can assume we all try the best we can to be good parents. 

In thinking back, perhaps it is not the specific insults but the overall message that because of my perspective my daughter would not succeed that hurt.  I suggest we see it from a different perspective.  It isn't about "can't" or faith or will or support it is about acknowledging your child and their body with all its variety.  That my dear Greta is why I think you are lucky.  Instead of telling you that you can do anything I'm giving you reality.  Not only am I giving you that, I'm also telling you that it's ok to acknowledge that you can't do some things, and that it doesn't have to matter.  I don't have to lie to you to make you or I feel better.  Your disability is not something I pretend doesn't disable you.  Those mothers suffer from a form of denial that I don't.  In their defense, when your child is diagnosed with CP it is heartbreaking.  Everyone copes differently with the reality of raising a child with a disability in a world built for the able bodied.  Some mothers, they prefer to tell their children that they can do everything their able bodied sibling can.  The truth is, you CAN'T.  There is nothing wrong with being disabled Greta.  There is nothing wrong with me telling you the truth and both of us learning along the way what you can and cannot do.  How frustrating would it be for you if you didn't learn something as quickly, or you couldn't play guitar like your brother Jack, or you couldn't ride a bike like your brother Gus, and instead of compassion you received a message from me that your struggle was all in your mind?  I won’t do that to you Greta.  I will always be supportive of you, and I will always concentrate on your strengths, without resorting to a fantastical lie that might sound great on paper but in practice just makes you feel like a failure.

Greta, you can't do everything, which is why CP is a disability.  However, if you ask me, ignorance is a disability as well.  So for the mothers who decided to treat me so poorly, I feel no shame.  I have learned that the support community for children with CP is pretty thin.  There is little room for diversity and the kind of support they offer isn't so much encouragement as it is entrapment (note: there seems to be much more support in twin CP groups).  

Today I feel lucky.  Today I feel happy for you, and I feel pity for those that felt they must attack my parenting in order to feel ok with their own. It isn't easy to hear the truth when denial is a part of your life.  Next time I won’t defend myself, better yet, I won’t even bother to venture into places where there can be no variety of opinions.  I've since left that group and it felt good to just delete the whole thing.  Just like it felt good to heave the last tricycle down the stairs and replace it with layers of wood to burn in our fireplace.  Screw tricycles, I for one would rather assist you in your efforts to craft the perfect s'more while indoors.  And I happen to know you are one fearless sled rider so bring it on winter.  As the chill replaces the warm breeze of fall the freedom to accept you as you replaces the stifling silence of dishonesty.  Of course if you want to try the tricycle again this spring, I will not deny you the opportunity to try and learn.  If it doesn't work out, I hear those electric scooters are super fast!  (Helmet needed of course).  Oh, and don't forget, your one handed mini golf is actually pretty good.  You were the first to get a hole in one in the family!

Peace out CP Facebook group, may your minds grow one day to accept your children as they are instead of how you wish they could be.  Being supportive of other parents is a LARGE point of the group, so you may want to keep that in mind before your "advice" becomes scolding of other parents who think differently than you and are in no way hurting or harming their child.  However, since you felt so justified in telling me that I was so very wrong, this post was so very necessary.  I'm sure this is not an isolated incident.  So please, try to remember that not all parents have to tell their children that "you can do anything!" and that they are not bad parents for doing so.  Advice is great and always appreciated.  However, someone asking if something is possible for a child with hemiplegic cerebral palsy is a NORMAL question, and in no way supports critical and unjustified attacks.  Moving forward, I will continue to respect and encourage my daughter with anything she wishes to learn or try, and I will also tell her that she may not be able to do EVERYTHING, and that is OK:)

Timeline of a Stroke by mommy Jess

I’ve been asked in various capacities to create number of timelines in the past three months. What I created had more in common with a police report than an attempt to capture a piece of time. So what would a real timeline look like?


The Timeline of a Stroke:

It was easy at first, privileged really if I were to be honest. We lived a glitter speckled life where white carpet expanses unfurled into manicured lawns and we dreamed together, out loud, in a bed that looked, as much as it felt, exactly like a cloud.

It was harder, a little. When the contours of the ceiling, set at improbable angles, echoed our infant son’s cries letting them bounced across the house like June bugs and driving us to bicker over bottle washing and laundry folding when the sleep deprivation became too much. 

 

It was exciting, grownup. When we somehow found a way to buy a home of our own. We painted it the colors of a globe: vast blue oceans, rugged earth mountains, green meadows. Planted hopless lilacs, while plugging endless leaks and creaks.

Then it was funny, or at least induced a true grin. Twins, two, double. Our cups runneth over. And mirror images of infant paraphernalia multiplied in our house as if engaged in furtive fornication behind our backs.

It was scary, magical in a way. When a family of three became a family of five in a bloody battle waged on a stormy day in April below the Mason-Dixon line.

It was hilarious, actually. When everyone cried at the same time, when we propped bottles under our chins and between our toes, turned up the music to find the exact level of cacophony equal to silence. We were given brief gifts of filtered sunlight through our old hickory trees on the rare cases when we managed to find the magic to please everyone, even if only for a moment.

It was dangerous, really. To begin asking those questions of our own child, like dropping packets of sugar into a gas tank. No going back. No more nice. No more real smiles now.

Then it when it was over and done, we sat thinking, “what do we do now”. A life that feelt motionless, like a stuck clock, refusing to move and let us go.

 

It was relentless, the idea of peace a good joke now. Sleepless nights, untold havoc on me, on mommy Shana, on us all as we tumbled through days filled with appointments and therapies and dashed hopes like acrobats. We performed our parts as if actors in a play all the while trying to camouflage the damage and still keep breathing.

It was foolish, maybe, as we fled it chased us, over 1,000 miles away to escape, and all that emptiness between us when we sat wondering what back in our little home painted like a map had found a way to nestle into our bones as we worked to build this new life knowing now we would never be able to let go.

It is forever, perched there now. Enough for me to see, visiting every day at the most inconvenient times, in the most inconvenient places.

It is reality, eternity. Slowing down a racing boy to make him wait for his stumbling sister, buying a plastic pool with a slide not even thinking she can’t use it (making mommy Shana rush that very day to find her a purple pool of her own, with a heart only I know was broke, absolutely broke, by Greta’s frustrated tears and what must have felt like Shana having forgotten her) Letting the medical collector calls go to voicemail, listening to her lilting narrative of how the doctors cut her leg open and how her hand won’t work, making space for her in this world through our work and advocacy only to be told our pain won’t fit into the mold of what a good mother looks like. Hating people, hating that I hate people, hating that I hate myself.

And of course, setting it all aside to play dolls with Greta and find Gus’s pajamas, and play go-fish with Jack, to go to every park and creepy petting zoo in New England and to indulge in the improbable toy or two now and then. It was approximately 11:45 September 15, 2012 when I played Greta’s favorite song and heard her sing, “a sort of fairy tale with you” in her petite pixie voice, right on cue. What else can I say; this was and is a stroke.

World Cerebral Palsy Day? by mommy Jess

Today is world cerebral palsy day. Do I wish one a happy world cerebral palsy day? Is it something we celebrate? Of course not, but the mischief maker in me does wonder what would happen if I did something on this day other than think about cerebral palsy?



What if instead of finding time to fill out my daughter’s disabled parking placard application today (seriously, are they ever going to just give us a permanent plate?), or rifling through files to find that one doctor, that one time, who accurately diagnosed her vision problem so I can follow-up, or trying to discern whether our new insurance policy is better or worse I instead used that time to make scrapbook pages for her dusty baby book parked high and untouched on our closet shelf?

What if instead of making sure Greta’s leg brace sock matched her dress so that her preschool teacher would find her cute, instead of intently scrubbing the ice cream (I kind of let her eat) for breakfast off her face, instead of taming her crazy curls I just shoved her feet into some rain boots and let her jump in every puddle she could find on this rainy day?

What if instead of spending all night trying to understand the medical neurology articles I dredge up regarding chronic periventricular hemorrhage, the functionality of the corpus callosum in one's brain, or the causes of infant stroke I instead commented on people’s Facebook posts?

What if I stopped trying to construct a careful narrative to help explain to her, and you, and everyone else and just shrugged it off as a funny quirk -this stroke- maybe it wouldn't hurt so relentlessly?

Well, I guess that last one is a little too far-fetched even for this dreamer. But maybe, just maybe, world cerebral palsy day could be something else for me, if not for our little family.  A day to stop thinking about cerebral palsy.

Outrage Fatigue by mommy Jess

Coined by the brilliant writers of The Daily Show I seem to be suffering a debilitating case of outrage fatigue. This, combined with the general madness of summer, has kept me from updating the blog so I’ve resorted to making a list of the sources of such fatigue and promise a real post soon.


1. Spiritual disability: yes, some people think this is a real thing and worse yet have told mommy Shana she has it. I suppose that means I do to, but I prefer the term “spiritually dead” as it implies no heroic efforts will be made to save me. Again, in some fields this is considered a real! thing! Is this what progress looks like? Cut to me sitting in a corner lamenting the demise of knowledge, intellectual progress and the commodification of the term "disability".

2. The Olympics: Yay! I like me some awesome global sports coverage that highlights interesting types of competitive sports and tell the stories behind the women and men who have devoted their lives to them. However, the disability discourse created in this environment is just…yuck. We like to call it inspiration porn
(http://buildingradicalaccessiblecommunities.blogspot.com/2012/02/inspiration-porn.html ). It is so exhausting to unpack how problematic this is with all those well-meaning folks out there that just love to use a little girl in leg braces running as some agent-less source of inspiration for them to feel good about themselves. Again cut to me sitting in the corner trying to imagine Greta being a source of inspiration for people and resisting the urge to make her wear a t-shirt in public that says “I am NOT your inspiration porn” (and no, I would never do that, what kind of parent do you think I am…okay don’t answer that).

3. The medical system: is there a reason we cannot find a competent doctor in this foreign land? Our newest orthopedist, upon being asked by me how long the effects of Greta’s tendon lengthening could be expected to last said…wait for it… “forever”. Um…isn’t there some kind of CP 101 that would make you eligible to speak to patients/parents? Cut to me clutching Greta and backing slowly out of the room only to find that all pediatric orthopedists are now gone from the this “world renowned” medical center. So I guess it is only geriatric surgeons who don’t have the slightest grasp on stroke or brain function and have been fixing broken legs for the past century for us. And this is with the good insurance!!!

4. The school system: Greta and Gus got to take part in a preschool for a staggering four weeks this summer (Mondays and Tuesdays only, from 8:30-11:30). Fine, wonderful! The fact we were informed about it the night before via email…hey, whatever it is summer we can go with the flow. The fact that we have been told nothing about fall and have the sinking suspicion another late night email with the details is headed our way late August is annoying. But the worst part is not knowing what Greta will receive is not being able to adjust other aspects of our life to pick up the clear slack this preschool program creates. Cut to me trying to find private physical/occupational/speech therapists and being told none have experience with “kids like that” upon which I slammed my phone down three times and sent myself to a timeout conveniently located next to the coffee maker.

5. Blogging: why won’t Blogger let me upload adorable pics of the kids? Who knows, they may be working in collusion with the hiring department of aforementioned medical center, or um, it could be user error? Either way I’m pretty sure this blog’s readers aren’t here for my whining they want cute pictures and I need to deliver! 

Okay, I enough complaints for one post. In other news, the kids are awesome. Jack is lean mean tan swimming machine after summer camp, Greta and Gus are potty trained (owed mostly to the efforts of mommy Shana) and we have had some seriously fun times this summer (the kids got pooped on by an owl, hilarity ensued). So next week I promise something more cheerful, don’t give up on me yet!

Liar by mommy Jess

I’m going to make myself unpopular and I don’t particularly care. I am straight up sick of the mommy blog-o-sphere that deals with children with disabilities. I’m sick of dominant heterosexuality, the whiteness, the economic status, the bright photos of expensive vacations, and most specifically this “gee golly gosh god sure did hand us a tough load to carry but I’m going to smile my way through it” attitude. I don’t exactly begrudge any of the above (okay, maybe the vacations) but I think the push for parents to smile or make the best of things is at best unfair and at worst dangerous.


Now let’s be clear, because when we talk about attitudes towards our children things tend to get black and white very quick. I’m not advocating adopting a permanent cloud of gloom that blocks every ray of sun. I’m just inserting the idea that maybe, just maybe, it is okay for parents to be sad, traumatized, to mourn, to grieve and to know there is nothing wrong with them for feeling that way.


I’ve heard so many mothers over the past month note they have accepted their child’s disability and the ways in which it has changed their life and view this as a mark of maturity. As though moving past those moments of sadness was some kind of accomplishment for which they should be rewarded and can now move on to putting all that unpleasantness behind themselves. Maybe so, but to me it seems shallow. I think they’ve succeeded not in acceptance or maturity but in fooling themselves.


And, because it is THE pervasive narrative of mothers of children with disabilities it leaves the medical community, the early intervention service providers, and the rest of the world expecting this eventual acceptance and thus at a loss when they don’t find it with us (and presumably with others who don’t live in a manufactured fairy tale).

Knowing this, my life is 90% lies because while I have the energy to do many things I do not have the energy to change this deeply ingrained idea. And, really let’s be honest I don’t have the power. So now the sorrow, I swallow it with a smile. When my eyes fill with tears watching Greta struggle to navigate the simplest playground I blame it on the sunshine. When I hide the boxes upon boxes of medical records in the deepest corner of my closet knowing that a run in with them will cause my throat to close and my heart to flutter I say I like to keep things neat. When I wake, every night unable to sleep for hours I point my finger at wanting to catch up with some tasks at work and not the simmering rage that is always boiling below my skin waking me with nightmares of indescribable horror.


Full disclosure I have always operated as a “normal” mother with my children. If you didn’t really know me you wouldn’t even see the darkness cross my eyes only to be quickly blinked away. Having to hold these lies is exhausting. I don’t have any real friends. I don’t have real relationships with my family. I feel like I’m being infected with plastic and the only response I get from those most like me is that one day I’ll accept things as they are and be like them. To which I can only muster a bitter laugh because as tiring as this act is, at least my mask comes off.

Building a Better Baby by mommy Jess

Every doctor we have seen since Greta’s diagnosis has been insistent that early intervention is the key to making Greta “better”. We lean close, listen to them say “babies brains, they are like plastic, they can make new pathways with work, anything is possible with enough effort” like an addict snuggling close to their next fix. All of them, from neurologists to occupational therapists promised to build us a better baby. Whether through pumping her with Botox, cutting her tendons, stretching her muscles, restraining her body in casts, forcing her through painful exercises we have been told of dozens of ways to make Greta work “right”.


I remember her first pair of leg braces, purple and green polka dotted and shoved into large black orthotic shoes that were supposed to mimic mary-janes but instead looked like miniature Frankenstein footwear. They didn’t fit right, in fact none of them since have. The Botox didn’t work either. Who knows if this most recent surgery will?

I fired her new physical therapy team when they wanted her to spend 30 minutes blowing bubbles with her left (affected) hand. I’m pretty sure we can do that at home. What I want is impossible, it is unfair for me to blame a 20 something physical therapist used to working with the idle rich on their tendonitis and knee strains for being unable to perform a miracle.

I watch her without her braces, without the bulky temporary cast. She is wearing her bright blue swimsuit complete with a hot pink skirt jauntily tied around her waist. She gingerly tiptoes over the uneven rocks of the local splash park. Bright red scar on the back of her calf gleaming in the brutal sunshine. Her posture is bent, her steps small and deliberate. She doesn’t see the other kids coming, whizzing past on her left side, until it is too late and they’ve thrown her into the railing. She doesn’t fall; she stops and deliberately rights herself, scanning the landscape for a safe escape.

I want to run and help her but know she has to try herself. I ignore the jagged steps half her size, the sharp angles of the fountains, the dangerous drops and treacherous sculptures. I close my eyes picturing her tumbling down down down but make myself stop. She is unsure; she grips the railing like a vice with her right hand, wrapping her elbow around the hot metal, knowing she can’t make it past the place where the railing dissolves into high concrete steps and leads to the place she wants to go and instead hobbles and hops to a safe place to rest. She knows she can’t follow the others.

She knows. She knows now. She speaks in her toddler dialect, asking why her left hand won’t open, telling me that she can’t do things like swing on the big-kid swings as she points to her curled fist. She gathers objects, careful to never take more than her right arm can hold. She is fearful of our back patio steps, crying out “hold you, hold you!” (her words for asking us to carry her). She has panic attacks when she feels trapped at the playground, when she can’t hear us calling and thinks we’ve disappeared, or when she can’t seem to see us because we are too far beyond her peripheral vision. People stare she screams so loud. I wish I could say I don’t care but I want to explain it isn’t her fault, it isn’t our bad parenting it was an accident, an injury, a bad decision, or a bunch of bad decisions, a punishment, a disaster, fate or I don’t even know what.

I don’t want to build a better baby. I’ve stopped believing in brains being plastic. I don’t want to figure out how I’m going to explain to Greta why.

Instead I want to stand in the wading pool, let the water drench my clothes, let the stones cast to the sides of the path cut my feet so I can hold Greta’s hand while she shrugs and slumps her way up the stairs. I want to smile and say “YAY, you did it!” and watch her smile of accomplishment while ignoring the other parents who sit a safe distance away and roll their eyes at the helicopter mother who won’t let her kid go. I want her to catch up to her brothers and slyly look the other way when she carefully aims a water fountain at Gus’s shoulders and giggles like a maniac at the ensuing surprise. I want her to know I’ll be there to get her down. I want her to know there are crackers and ice cold water (courtesy of the ever thoughtful mommy Shana) in the car. I want to wrap her in a sun warmed towel and carry her there taking in her in shampoo, chlorine and sunblock perfume.

I don’t want to look her in the eyes because her beseeching gaze paralyzes me. I want to let her lazily bounce her hand out the open window me feeling the relief of having nearly escaped the burden of time always pressing down on my shoulders and she tasting the New England summer air.

The Fight by mommy Jess

In this place in which we live, where ice still bleeds from the cracks of boulders creating rivers perpetually frozen in time, it would seem like a good location to hone one’s survival skills. And yet we suffer the same blows and weather their impact without the benefit of this granite slated landscape’s assistance.

Pain cannot be contained. Both mommy Shana and I have navigated several odd interactions in the past few weeks that would pop the seams of any bright side bubble we could possibly fashion. Neither of us has the energy anymore to slap a smiley face on things and yet we still find ourselves smiling, laughing till we cry over Jack’s silly dance, Gus’s wardrobe, Greta’s spot on delivery of a belch in a silent grocery aisle.

Look on the bright side I hear all over the place, the siren song urging one to count their blessings is so loud I can barely hear it over the roaring din of the kid’s constant clamor. And yet, like a note intently placed to introduce a new melody, I hear another rising tune. This song holds us hostage by its tightening grasp. It has all the upbeat capacity of Adele’s newest ballad laced with Quaaludes and it’s playing on every station on the dial.

Policies being created to base college applicants on the functionality of their brains, physical therapists chastising us for making informed medical decisions about our own child, little girls dancing in tutus on stages where a spotlight will never find Greta, school boards disinterested in disability services with eyes honed on a new baseball diamond. All of them we could dismiss with a little battle, a little fight on our part. All of them left to wither and wind their way under our skin until finding the spirit to bright side these things into oblivion with logic, ethics, and reason is impossible.

What is worse is I was doing better, so much better for a little bit there. I sat by Greta’s unconscious side after her surgery and did not sob bitter tears that I know make the staff oh so uncomfortable. I watched her birthday, their birthday, approach slowly from my desk-side calendar and shoved the dread and the re-living and the replaying down so far into the pit of my stomach I laughed my way through our bungled birthday party and only for a moment, the exact minute she was born, paused from my job as assistant to her princess party to hold Greta’s hand and trace a finger over a palm that is quickly changing from the chubby fist of an infant into the slender hand of a child, completely ignoring her left hand balled into that perpetually unbreakable fist, refusing to go there. I felt, that night, like yelling “I did it!” as their past two birthdays found me sometime around 6:00 collapsed with grief crying hot helpless tears in a bathroom somewhere.

It takes a certain kind of war to fight off the chill of April, they were right about it being the cruelest month, but yet here we are still fighting but still frozen. Still working to put those pieces back together but still so irrevocably broken.

Three by mommy Jess and mommy Shana

Ice cream, purple cast, sunglasses, and attitude. Three? Bring it on.

A Wish by mommy Jess

I don’t pray as most of you dear readers know. God and I finalized the details of our divorce sometime in the late nineties.

I broke our mutual silence to pray (or really beg) god to please oh please oh please let Greta be okay repeatedly every night for months and we all know how that ended. But really, even as a kid I was never that good at it. You know how they say you have to believe in hypnotism to become hypnotized? I never believed. I’ve only turned to beseeching the darkness to do the impossible at my most desperate. It is no wonder it doesn’t work. Neither did that birthday wish for my parents to finally get cable television when I was ten despite it being accompanied by the extinguishing of ten blazing candles atop my dairy queen ice cream cake with one perfect breath.

But I do kind of wish on shooting stars and wishing wells and other customary wish-based cultural touchstones. A few nights ago I climbed damp metal stairs on a pitching ferry boat in Maine with Greta in my arms to smell the night air. This was our last hurrah before her surgery to lengthen her tendons and goodness knows what else (they have to see once they "get in there"), a trip to help us forget what awaited us at home. On the top deck of the ship the sun was setting and I saw the stars come out and made a wish, something that sounded a little like a prayer but more like a plea. Who knows who I was talking to; the salty air, the whipping wind, the rocky sea, or the little girl breathing in and out in my arms, her chubby fist wrapped my scarf, silenced by the expanse before us, trusting me to hold her safe above the churning water.

A Wish for Greta:

Universe as you take my daughter from me to that cold surgical suite please let the surgeon’s hand be swift and skillful

Please let the nurses who restrain her while they pump cherry scented gas into her lungs and hold her thrashing limbs be kind

Please let her IV go in on the first try

Please let their words be soothing and her decent into unconsciousness be filled with serenity and not panic

Please let them be able to fix the tight tendons that are always pulling, pulling, pulling past the muscles, past the skin, past the tissue and bending her bones

Please let her wake up

Please don’t let her wake up screaming in pain unable to recognize me

Please let the medical staff be merciful and give her the pain medication she needs without me having to pull a “Terms of Endearment” Shirley Maclaine level freak out

Please don’t make her angry with me for doing this to her

Please let this be the right thing to do

Pretty please?

Karma by mommy Jess

A coworker recently lamented losing her belief in karma, mourning her shattered confidence that if she did the right thing she would be rewarded. It was hard to be sympathetic being that I don’t believe in karma, I don’t believe that being a good person will allow good things to happen to you, I don’t believe in god, and I sure as hell don’t believe that life is fair. But that, to you readers, is old news.

I mean if karma were to exist wouldn’t we have found some nice new house to move to that had great schools, great disability services, a short commute, plenty of room, and a park or two nearby? Instead we’ve been denied by more rental houses than I can count, my favorite reason, after calling within one hour of the house being listed and being detained by the owner for over an hour not once but twice to listen to him pontificate on his hideous art was: “I have just committed the rental of the house to someone with whom I have mutual friends. I felt it was a more compatible choice”. Or, close tie, the house that we viewed and submitted a completed application for only to be told 2 weeks later (after repeated phone calls asking for updates) that the house isn’t actually for rent just for sale. The house mysteriously remains listed for rent.

Okay, enough self-pity already. For now we just try to be chipper around the kids and keep packing boxes with no idea where we are going. I go to work and try not to laugh at the petty politics passed around the wide conference tables and listen with concern to the needs of my students and my employees and act accordingly in what I hope is everyone’s best interest. Like every aspect of my life since January of 2010 (Greta’s diagnosis) I do the best imitation of myself. Now it’s taken on a new iteration of denial and desperation and the cynic in me is left to wonder what’s next. For being such a skeptic though I must note that I sure do play by the rules even though they don’t play back. I’ve never even thought of doing the “wrong” thing, or making self-serving decisions just to make my life simpler, but I’m past thinking this behavior will reap some type of reward. So perhaps somewhere in me a tiny flicker of hope remains. Battered by threats of homelessness, bureaucratic impotence and visions of Greta’s recent insistence on dangerously rolling her ankle with each step, I may be down but I’m not out.

I am capable of compassion, despite what bitterness may leak from my unprotected cracks at times. Greta’s own physical therapist (PT) makes no attempt to hide she believes Greta’s gait is my fault. She insists that if Greta stretches more, wears the silly plastic braces that cost a fortune and can’t possibly contain the will of an angry two year old, this would not be happening.

I know she is mistaken and suffering under the delusion that many PTs have who deal with kids with CP, she thinks it’s a muscle problem, a tight tendon that can bend to her will, not a neurological impulse as strong as our need to blink when our eyes become dry. Try as I might I can’t convince her that Greta’s brain will insist on tightening that muscle no matter what you do short of putting her into an painful immovable cast or slicing the offending tendon nearly in two, which likely will happen in her immediate future. But she diligently shames our parenting week after week, and honestly I don’t have the energy to even argue with her anymore.

I pack up the countless articles gleaned from medical publications on the uselessness of these tactics and let Jack color large prehistoric landscapes over the words “chronic periventricular hemorrhage and imperceptible therapeutic response”. I watch her ministrations over Greta’s tiny curled foot as she rubs and stretches and massages and I look on with what could only be described as concern when we all watch Greta rise and skip around in the exact same way she did before the incessant stretching and hear her PT congratulate herself on how much better she looks. It is a special brand of delusion this woman has but as a comrade in delusional thinking I let her have it. I do wish her narrative didn’t cast me as the villain, but I’ve got villains bigger than anything she’s ever seen so how can I begrudge her a little black and white relief? I visualize her proclamations about our lack of intervention and Greta’s potential as if tamping a lid onto a particularly warped Tupperware container. It is with certainty she discusses Greta’s potential, who am I to shatter her illusions?

I am tired of potential, from therapists to doctors to family it is always about Greta’s potential. Potential to be “normal” to be “better” to “be more empathetic to others” to “be a better person”. I am mischievous; I wonder whether Greta’s symptoms will be worse than they imagine, that she will be bitter, cruel even in the face of what seems to be such a concrete example of the unfairness of this universe. Potential for what I always ask. It makes people uncomfortable so I’ve stopped. But nightly I wonder what it means to have potential and silently I think it has the same weight of having good karma: absolutely worthless.

Disability, Discrimination, and Drama by mommy Jess

What do disability and eviction have to do with each other? Ask our landlords, who after approving the provision in our lease to move to a month to month structure after the end our initial lease term (March 31), decided on a whim, to rescind that acceptance. We have been told by our lawyer, and our lease actually specifies, that the house is not even supposed be on the rental market only available for sale. After pointing this out to our landlord, who shall henceforth be known as Huge Entitled Baby (HEB) he sent us one angry email after another demanding random things until mommy Shana had to take a break and couldn’t respond fast enough (3 hours) and he decided to evict us.

HEB is a whole other issue, he’s actually cutting off his nose to spite his face by asking us to leave in March, let’s just say this isn’t the prime time to have your house sitting vacant in the middle of New Hampshire. Why I mention it here is the reason we could not sign another year lease was because of the disability services Greta is or is not going to receive upon her third birthday, April 23rd. The month to month provision that HEB gleefully exuded as a perk of choosing this home when we signed the lease, would have allowed us to make sure Greta either received appropriate services here, or if we would need to move elsewhere, would have given us time to find a suitable home.

The decision is in the hands of the school district and while all citizens in the state have access to services what district you live in can make the difference between Greta attending an all-day interactive preschool with both children with disabilities as well as children without to prepare her for a school structure, or us having to bring her to a cold room in the middle of the school with no other children to do physical therapy for one hour a week. Truly, the spectrum is that wide. But we were stuck with the end of March as the date for when this decision would be made, hence inducing the wrath of HEB.

With such important concerns about her future hanging over our heads to suddenly find ourselves potentially homeless, well it’s a bit to take in. But the real problem is that we have to put important therapies on hold for Greta and probably even an orthopedic surgery because we do not know where we will live.

In a just and fair land this type of thing would not happen, but if you happen to have HEB as your landlord…well money is indeed power especially in this small town. But aside from the harassment and threats we’ve received I have to wonder how many other families are forced into making such difficult decisions to receive services for their disabled child? People who meet me and learn about Greta automatically assume I have fought, or will fight, for everything she has which somehow makes me a good person.

I think these folks have it backwards. I am not good because I fight for her, the systems and people (i.e. HEB) who work to actively prevent disabled children from receiving services are the problem. Have they ever stopped to consider what they are fighting for? Clearly this is a question I can’t answer, but I can ask us all to stop and consider the same thing. I’m fighting for the rights of my family and for my daughter to get the same services she would get in any other district within a 50 mile radius of our home. HEB, I guess he’s fighting to make sure we little people know our place. Which one of us is right, well I can’t say as clearly that would be a conflict of interests, but truly people: what are you fighting for?

To my Son, The Dreamer by mommy Jess

To have an opportunity to watch your child from afar feels voyeuristic and bewildering, like catching a reflection of yourself in a mirror you hadn’t expected where you spend several awkward seconds realizing that yes, that is indeed you. It is not without my heart in my throat that I watch Jack line up after school on the days I am lucky enough to pick him up from school. He manages to seem aloof and strapping to his friends but to me looks vulnerable and small. He doesn’t stand out in a group but I’ve been told he doesn’t bend to peer pressure either. Something I take pride in though I claim no ownership of.

I dropped him off late to school the other day and watched as he wandered alone into the building. He kicked his oversized snow boots against the walls of the building in a dreamy dance that had him wavering from one side of the pavement to the other. He turned his head, side to side and up and down, motions exaggerated by his stocking hat. He seemed to be taking it all in. He was in no hurry. I have no way of knowing what he was thinking about, but I had the distinct feeling he was not worrying over the agenda of his day or even thinking of what waited for him inside those doors.

My son is a dreamer. He has trouble “staying on task”, he doesn’t read the insipid books created by his school with exhilarating story lines like Things to See! I should care, but I don’t. I know that in all likelihood he will lose this trait. That instead of meandering off the school bus, pausing to inspect a hill of dirt, and then running into my waiting arms grinning ear to ear, surprised as he is exhilarated to see me he will instead walk stick straight to the back seat, embarrassed to be seen with me.

So for now, dream on Jack. Life is just biding its time, thinking up ways to squash your freewheeling fanciful fun. Don’t let it win yet.

Happy Anniversary by mommy Jess

What is it about the human condition that even if we try and train ourselves to ignore the ticking of the clock we still hear it? That we can know with certainty the meaninglessness of the measurement of time and yet still attune ourselves to its march?

Greta’s MRI that confirmed the stroke she had shortly before, during or after birth was on January 14th 2010. Last year I noticed a general feeling of dread as that date approached even though nothing bad really happened that day. I mean, the stroke was months old by then isn’t really linked to a random day in January. I do know though that that was the last day we could pretend everything would be okay.

Though we had been engaged in speculation and maddening medical negotiations and late night research sessions since October, the mystery all ended on January 14th. And even though we like to think of ourselves as smart people who knew long before anyone would listen that there was something going on with Greta, before that date we could still sleep at night lulling ourselves with a “everything is going to be fine” lullaby.

So now it is almost two years since that day when the illusion of normal fell away with some lovely images of a then 9 month old child’s brain and the damage that had been done.

I remember fragments of that day. I remember relief that our fight for the doctor’s to listen was justified. I remember absolute horror at the revealing of the MRI images, I was surprised (I am still) by how upsetting they were to look at. I remember numbly calling people who had been following Greta’s medical journey and robotically telling them what we were told. I remember us not crying. I remember the urge, so strong I nearly had to sit on my hands, to rip the stupid electrodes off Greta’s head and unplug her from all the machines and IVs and what-nots and run away with her forever.

How can it be that two long years have passed since this day?

I do not recognize the woman who lived that day as myself. I am so different now that January 14th might as well have been the day the whimsical, impulsive, self-assured, confident, easy to laugh and slow to cry, hopeful, optimistic, dreamy Jess died and a new Jess who is bitter, full of self-doubt, is distrustful, jealous, angry, and full of guilt was born in her place.

Please save me the rage at this declaration, the accusations that I should really just cheer up, or stop wallowing, or whatever. I’m just stating a fact. I don’t expect the former Jess to come back, I see her from time to time though, she comes to visit: she sings old songs from the 90’s in the car, she patiently gets Jack yet another glass of milk at 2:00am, she combs Greta’s hair into impractical pig tails and makes the kids ice cream cones in the middle of the day, she fills the bathtub to the brim with bubbles, but she never stays. I’ve let her know her life is ready for her, the sheets are clean, the floors are swept, the laundry is folded and the dishes are washed should she ever decide to come back to stay.