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.

Ghosts of Christmas Past by mommy Jess

As you may remember, last year Jack had a sweet altruistic understanding of Christmas that somehow allowed Santa to act as not only a toy distributor but a miracle worker as well:
http://walkingwithgreta.blogspot.com/2010/12/hard-questions-by-mommy-jess.html

This year, remembering fondly his Christmas wish from last year, I asked him whether he thought Santa would still “fix” Greta. He sighed with the impatience of a teenager and said “No Mom, I know Greta is broken forever” you could almost hear the implied “duh” dangling at the end of this proclamation.

And just like that, in the course of a year, he’d gone from blindly optimistic to realistically jaded. The transition from 4 to 5 has been marked by changes big and small, and this was further proof that time marches on whether you want it to or not. After all, he’s been through a cross country move, starting kindergarten, and witnessed countless overheard conversations about therapists, doctors, insurance, and far too many pleas of “Jack please go play I’m busy!” this year. Too many days of picking him up from school with red-rimmed eyes, too many ruined family outings, and too many run-ins with the cruelty of small children has produced a harder Jack. One who still hoists Greta out of the snow where she’s gotten stuck but one who keeps an eye on the places he’d rather be going.

Can’t say I blame him or even mourn this change, it was something I understood as inevitable. This comes with growing up. Every year a little more magic will be lost only to be replaced with reality, which let’s be honest is never as good. And what would be the alternative? So many times I hear about children who faked believing in Santa long after they knew the truth in an effort to spare their parents sadness at the realization they had grown up. I never wanted that for Jack, he needs room to grow and my feelings, however fragile, shouldn’t be his concern.

And yet, there is still part of me that longs for the pure innocence of his second Christmas when I awoke at 5am to fill 25 helium balloons of red and green to festoon his presents just so I could hear him shout “balloons balloons!” over and over. And of course I still smile remembering his third Christmas when it took him till noon to open his gifts so intent was he at examining each trinket and treasure. That same year we hung 5 stockings, two representing the spinning and swirling babies in my belly, and allowed our pupils to dilate at the visual representation of our soon-to-be family of five.

But my smile fades and my eyes grow dark when I remember the next Christmas, when we masked our fears and doubts about Greta with spiked eggnog and sugar cookies both of us knowing something ugly was lurking in our future. And the following year when we attended the holiday party for the local social service agency that housed the early intervention program that had become such an encompassing part of Greta’s life. Where Jack won the “super sib” award for being such a good big brother to his disabled sister, Greta danced in her clunky leg braces to “festive” renditions of Jingle Bells, Gus cried from all the commotion, and our hearts broke in ways we never imagined possible.

And now, this year, even in a new state, in a new part of the country I can’t escape these ghosts of Christmas past. Since I haven’t yet reached Scrooge level and been blessed by a visit from the ghost of Christmas future I’ll stick to the present where I can happily report that the Christmas machine is well underway in our house. Our elf (yes, we have tricked our children into believing in Santa’s version of big brother), Neil, keeps watch as I wrap presents well into the night once the kids have fallen asleep. Mommy Shana and I have had several interesting discussions about the intricacies of toy assembly and I can say, with honest cheer, that our kids LOVE Christmas.

So happy holidays to all of you dear readers, whether it is Christmas you celebrate or Winter Solstice, New Year’s, or Chanukah or all of the above. We all deserve some kind of celebration even if only to acknowledge the survival of yet another year. Me, I’ll keep making the same Christmas wish year after year, for peace. Peace for you, peace for me, peace for the world and peace for everyone. Maybe one day it will come true.

CP Connection by mommy Jess

So there a movement to blog about cerebral palsy (CP) and link it all together under the CP Connection by this blog:
http://elliestumbo.blogspot.com/search/label/CP%20connection/

As you may have correctly guessed by now I’m a bit of a loner and terrible at joining communities. Mothers of Multiples, support groups for parents of kids with CP, all of them sound like torture to me. But since electronic networking takes no actual social effort on my part I’m happy to do it.

But what to write about? CP pretty much dominates this blog and let’s be honest, I’m not the blessings and rainbows kind of blogger most folks like to read.

So maybe I can try to talk about that, and ask the greater electronic world out there when I’ll be a better person because of this? After all, that is what conventional wisdom says, that I will become a better person and so will Greta, and mommy Shana, and even Gus and Jack for having overcome this “adversity”. I’m still waiting to be transformed.

As far as I’m concerned Greta’s stroke is the best advertisement for atheism I’ve ever seen. I still cry every time Shana and I talk about what to do, how to move on, how to let the past go. Dear readers, I must confess I am stuck. People say time heals all wounds but I still feel as raw as Greta’s newly scraped knee. And despite my being a well-educated woman of basically sound mind with decent interpersonal skills and sense of self, I can’t see a way out of this tunnel.
But there are benefits to being me (I think). Like not getting upset over $1,000 insurance bills. Or letting Greta watch the same movie over and over because it makes her snuggle into me on the couch. Or even laughing at silly work politics because unless you are telling me that Greta had another stroke, I really don’t get that upset.

And then of course there is Greta. Usually happy, a slight diva, easy to smile and slow to cry. Who is empathetic already, a phenomenal dancer, and loves all animals great and small. One might think, after reading the above, that I can’t appreciate what a wonderful and amazing child she is but I promise you that isn’t the case. I can see all these things in her but can’t keep my mind from playing the endless what if song.

So for all those parents who are better at this than I am let it be known that I am waiting to one day join your ranks but for now I will be here …waiting.

Thank You by mommy Jess

So, as promised, the obligatory (but non-the-less heartfelt), list of things for which I am grateful to make up for my past grumpiness.

Thank you life for the following (in no particular order):
1. my three beautiful children
2. my wife
3. christmas decorations
4. butterflies
5. pie
6. new shoes
7. the smell of winter
8. sledding
9. empathy
10.perspective

There is certainly more than these ten things to be thankful for but it’s a start.

Speechless by mommy Jess

For a number of reasons, big and small, this month has left me unable to string together a coherent sentence, let alone compose a logical and witty blog post. In light of this setback I offer this sloppy list of ten reasons why I’m speechless.

1. Our insurance is insisting we drive three hours to get Greta’s leg braces despite them being made at their local office five minutes from where I work. “In network providers” can suck it.

2. At least five people have told me Greta will be a better person for having to overcome adversity this month. Well intentioned attempts at dismissing my child’s struggles can shut it.

3. A student told a story of teaching an impoverished child in a developing country with cerebral palsy to type. I never thought about Greta’s ability to type before now. That was a dart I didn’t see coming. I spend most my life clicking away at a keyboard and never thought about this before? What kind of mother does that?

4. Two words: family drama.

5. My contact lenses fog up every time I cry making me spend most of each day in clouds of white.

6. I tried to read that inane book “The Happiness Project” and follow some of its recommendations and ended up feeling so angry at my failure I became certain I was reaping some kind of reverse happiness karma for criticizing its inanity.

7. My work and travel schedule has made it so I rarely get to see my own kids for days at a time. I miss them, I’m afraid they’ll forget all about me and the things only a mommy Jess can do, like teach them the dance routines to Lady Gaga videos.

8. After all the research I’ve done I’m afraid I know more about hemiplegic cerebral palsy and Greta’s stroke than most the new doctors I meet, which is scary and frustrating at the same time.

9. Things like huge breast cancer and autism awareness campaigns make me jealous. Then I feel guilty for feeling jealous. I am so heavy with guilt already that adding this new stone makes me feel like I will sink into the ground and flatten under all the weight.

10. Everywhere, every place I look there are healthy twins in happy smiling pairs. See above jealousy/guilt/shame cycle. How much grief can a heart hold before it bursts?

See… better not to say anything at all. I promise next week to have a list of 10 things I am grateful for, but for now...screw it.

Faking it by mommy Jess

Recently I committed fraud. A trip to the Department of Motor Vehicles in any state is not usually considered pleasant, but our efforts to become actual legal residents of the state in which we actually reside went surprisingly well. And no, I did not commit fraud in anything related to those efforts, but I did tell what felt like a lie.

Alone in the office, a tiny overheated box with inexplicable signs pointing patrons from one line to another and chains roping off random areas, the two office workers and I chatted about twins as Gus and Greta did their best to destroy the place. Mommy Shana left with them for a minute, leaving myself and the two employees alone. They remarked on the miracle of twins, on how cute Gus and Greta are (thank you very much), how big they were when they were born, how I made it almost full term, how lucky I am to have had a boy and a girl, how lovely a family we were. All these things are true but it felt like a lie.

With a heart as heavy as a stone I smiled and agreed. I stood on the stained carpet and accepted the accolades for all the things I had done right in their books. And while I thought fleetingly of saying, “well, Greta had a stroke so things have been hard” I just couldn’t do it. Not today. Not when all I could see in the back of my mind was the diagram drawn earlier that day by her new orthopedist detailing the slicing of ligaments and stretching of bones he hopes will make Greta more “normal”. I let myself get lured in to that siren song of normalcy and didn’t bother to set the record straight. For a moment I was just one of the girls, sharing birth stories, joking about twin skin (google it people, it’s not cool), and the joys and exhaustions of “double trouble”. And for a minute I knew, I could have been good at this. I could have been one hell of a mother of twins. One who knows where her birth certificate is, remembers the snacks, knows when only a piece of candy will do, and can remember to slap on some lipstick for her drivers license photo. Rest assured I wouldn’t have been that annoying supermom with the perfect figure and the obedient kids who just stepped out of a Gap ad, but I would have been damn fun and damn good at having fun and always brought enough wine to the party for everyone.

I had to come back to the real world some time. I had to watch Greta tumble down the “zany” dips in the play place structure at the most depressing McDonalds ever (seriously, I think there was a ball pit for goodness sake, didn’t those go out with the Regan era?) knowing she was as doomed as Alice falling down the rabbit hole, that she would be trapped forever sliding around a greasy plastic tunnel like a turtle on her back till I came to help her escape. And I watched her realize her fragility and sense the treacherousness as she watched her brother go on without her rather than protesting being left behind and instead return to the table to sit and wait. And now I know that I am not very good at this, because to be good at it means I wouldn’t have to watch this scene and want to level that play place to the ground, I wouldn’t have to cry my way home from every doctor’s appointment, that I wouldn’t have to feel so sick at the sight of her medical records that I hide them in my car, that I wouldn’t be so bitter, so angry, so jealous, so utterly sour that I might be able to make a friend or two, and that and my heart wouldn’t be so frozen that I could see the glorious sunrise each morning above the mountain we know live perched upon and not wonder how Greta would tumble, falling forever unable to stop right down its side should I let her tip over the edge.

All this is not to say that I don’t appreciate my beautiful family as they are. Gus is back to rocking the Village of the Damned bob (paid for this time, so not my fault), Jack has emerged as a leader in social justice inclusion at his school in his own kindergarten politico way, and mommy Shana and I are about to not only legally married but legally recognized parents to all our kids. Chipmunks are nibbling our carved jack-o- lanterns and I fully expect to produce some cute Halloween pics of the kids crammed in costumes impatiently waiting for when they finally get some candy.

Greta, you are already a pro at playing pretend. You feed your babies and line them up and even let them take turns in the swing. One day your version of playing pretend might change. I can’t promise you it won’t hurt to fake “normal”, the closest I can understand is when I was back in the closet in the early 90’s and had to answer weird questions about boyfriends. I hope however, that you give yourself permission to be whoever you damn well please, and to celebrate passing at “normal”, mourn the necessity to do so, or refuse to play that game however and whenever you see fit. And, I secretly hope you do end up one of those super people who make everyone else feel like losers who could never compete with the brilliant, confident woman that is Greta, something tells me you won’t disappoint.

Witch Hunt by Mommy Jess

Being Halloween season, being that we now live close to the geographic area of yet another source of American embarrassment, the Salem Witch Trials (http://en.wikipedia.org/wiki/Salem_witch_trials ), and being that a class war seems to be erupting across this country I have been thinking a lot lately about witches, women, and the wars we fight.

Having to introduce our family to a whole host of new medical providers is stressful; it sometimes feels like a witch hunt or a war. Trying to strike the perfect balance of informed and dedicated with meek and respectful is tricky at best. I feel like a windshield wiper forever going too fast screeching in your ears, or too slow obscuring your view with droplets of rain. I think of each appointment like a performance. I present Greta, her history, we talk about the charts that her old medical providers refuse to send and I procure my own copies I brought “just in case”. Eyebrows begin to rise…I know too much. I step back into safe mom territory with some banal compliment about the provider and nod with the enthusiasm of a cat chasing a laser beam as they describe all the things I already know. I smile till my cheeks hurt and gouge a small moon-shaped hole into the palm of my hand to keep from letting my gathering tears fall when they casually talk about her damaged brain being impossible to “ever really fix”.

I know the drill. It feels like a battle, and I think of it as a witch trial because there is an implication that if I had done things differently (different orthotics, more speech therapy, different speech therapy, no Botox, more Botox, more stretching, less stretching, saw this type of specialist earlier, waited till later) that her abilities would be different. I know this isn’t true, as I’ve said before there is no magic spell I could cast that would change a thing and this witch mom knows it. But I lull these professionals into my clutches with this formula of likability offering as a potion too sweet to resist. Let’s just say, I know how to get what I want. Whether it matters or not is a whole ‘nother story, but I leave with the prescriptions or the devices or even sometimes the dreams for the future that I chose before our appointment even began.

But that is the world outside our doors and while I wish I could say the same battles weren’t blasting across our bedroom every night in my own head, they are. This modern day witch hunt is led by yours truly and is paid for and entirely funded by myself. It is about as useful as the mass hysteria of the 1600’s. I, perhaps cruelly, said to someone who asked how they could help after I received less hopeful news about Greta some time ago that unless they had a time machine they were useless to me. Yeah, not my finest moment, but that’s how we witches roll. Sometimes we offer poison apples and sometimes just poison.


So how am I faring in my own personal witch trial? Poorly, I think I’m two steps away from being convicted. But until that day I rely on you Greta, your huge smile, your enveloping hugs (complete with back pats), your skipping dance, your willingness to try just about anything, your unrelenting morning cheerfulness as my defense against the accusations I fling at myself. And, since I’d like to think the crux of my closing argument relies on proof of using my powers for good I am planning to take Halloween by storm in our new community and will don my witch’s hat with good humor and will try to brew some spells of kindness and peace instead of battles and bitterness.

A Guide for Parents by mommy Shana

Last week I went to see my Gastroenterologist. Though I would love to go into great detail about my colon and experience living with ulcerative colitis I will spare our reader’s that particular info.
However, I couldn’t help but notice a wall of brochures next to me while I waited to meet the Doctor. One of them was entitled “A Guide for Parents” and was published by the Crohn’s & Colitis Foundation of America. I quickly grabbed this brochure and was perplexed. I was of course glad that parents would be given information specifically for them because as a person with ulcerative colitis I know that those who don’t have it know very little about it, but at the same time I thought about how I didn’t get a brochure for Greta and wondered, is there one?
When we found out Greta had a stroke, we didn’t get a brochure; we didn’t even really get a diagnosis. The only thing we were told was that her seizures, which brought her to the hospital, were benign myoclonic infant epilepsy which meant that her seizures were a result of her brain misfiring over the damage that had occurred in her brain and not generating new damage. We were given a crappy print out (I’m talking circa 1990 medical journal photocopy) of what benign myoclonic infant epilepsy was and was told she had a stroke, wouldn’t have another one, and we should be on our way. That was it. I’m serious. No one told us why she had a stroke only that it occurred sometime shortly before, during, or after birth. No one told us what to expect. We left without any answers and with more questions than when we had arrived.

What is it like to find out your child has permanent brain damage in the same way someone might tell you your child has brown hair or green eyes? It is odd, weird, confusing, scary, and incredibly frustrating. My daughter has permanent brain damage and yet the medical community acted as though it didn’t matter. Maybe there is a good reason why everyone remained silent about Greta having Cerebral Palsy but whatever the reason, it’s not good enough. The information we were given changed our entire family’s life, and yet no one wanted to talk about it. Isn’t early intervention key here? Not being doctors ourselves we had to rely on our own research and we feared that Greta would need a lot of care, and we were right.

What does it mean when your child has a stroke? I can tell you it takes a team of doctors to treat your child. Neurologists, orthopedists, physical therapists, occupational therapists, ophthalmologists, ENTs, the list continues. Greta has damage to her brain, which means a great deal. Her brain works so hard just to control her movements that stimuli around her can sometimes be too much. You will often see us join a fun group of kids, or try to enjoy an outing in public, only to leave 30 minutes later with a screaming toddler in tow. If there is too much info for her brain to process, she becomes overwhelmed and frustrated quickly. While she wants to keep up with children her age, doesn’t have the ability. We learned quickly after a failed attempt at part-time daycare, that Greta couldn’t do it. She came home tired, crying, and sore, and also seemed to be in pain. It is important to socialize, but Greta can’t socialize like other children. However, she is extremely social when you meet her! If you are in a quiet environment, or you come over to our house, I guarantee she will charm you. She hugs you and loves you. On her turf, you can see that Greta is a warm, loving child who just happens to appear to be suffering an exorcism in public.

So back to the brochure. Wow, what would I include? Maybe an introduction to the diagnosis;, the impact of the diagnosis; what causes it; what medications/therapies are used to treat it; side effects of the treatments; emotional impact; how a parent can help their child cope; how to tell family friends, teachers, etc. At least the parent would walk out of the room with that instead of nothing. A brochure would have been the smallest gesture of kindness and concern in a very difficult time. I did end up finding a brochure but it wasn’t from any physician or hospital, but an online listserv. Where I learned about future problems like riding a bike, learning disorders, and other problems that I hadn’t considered, and now feel more prepared to deal with should I have to. I also learned how to help Greta learn things and modify things so she could participate.

So what would have changed with a simple brochure? Certainly it wouldn’t have fixed the damage to Greta’s brain that I am reminded every day is permanent, but maybe it would have left me feeling less alone. We walked out of the hospital in the same emotional state we walked into it, and no one at all seemed to care. It wouldn’t be the last time, but it was the first, when we realized just how alone we were in this new world of disability.

And we didn’t even get a brochure.

Baggage and Belonging by mommy Jess

Before I regale you with tales of this family’s great migration to the east coast, it is important for to me to encourage readers to take a look at fellow blogger Shasta’s post at Outrageous Fortune entitled “Dispatches from the Land of Not Okay” http://www.outrageousfortune.net/2011/09/dispatches-from-land-of-not-ok.html
All I can say is to that post is ditto. And, that I hope this essay will replace that saccharine drenched ode to ignorance “Welcome to Holland” currently given to many parents of disabled children (http://www.our-kids.org/archives/Holland.html ). I know I’ve criticized that piece before but I’ve always felt it proffered the worst myths of raising a disabled child while addressing none of the struggles. I know many disagree, but at the very least I think we can agree that parents of disabled children are due a new declaration and Shasta’s has my vote.
On to New England living where this family of five has seen a fox, wild turkeys, lived through an earthquake, a hurricane, and faced the first frost on our windows. We traveled over 1,000 miles felt at times a freedom akin to madness as we flew over the rocky pavement of our past to embrace the smooth concrete of our future.
Maybe we thought that by filling a box with the ill-fitting orthotics, the overflowing binders of medical information, the appointment card reminders, the individualized family service plans and the long applications for early intervention services we would never have to live those moments again. As if by the very act of sealing up the physical baggage of our broken hearts we could hide away that particular pain in the dusty corner of an attic somewhere and keep the lid closed forever. But it’s never that easy is it?
But the seams sagged and the joints became jagged and soon CP was spilling all over the seats of our minivan as Greta twisted in pain from the long car trip. Pouring down our driveway as she collapsed over and over unable to traverse the terrain and scraped a permanent scar into both her knees. Flooding into her bedroom as she woke each morning in the dewy sunlight pointing to her left (affected) side crying “boo boo, boo boo, owie” clearly becoming frustrated with her tightly curled tone and her body’s refusal to listen to her demands.
Cerebral palsy is a like a spell that is impossible to break.
It can’t be broken by outrunning it, nor removed by ignoring it. No amount of brand new purple sparkly curtains or new adventures to be had or cool breezes off the coast could stop its daily presence. And really what fools we were to think it could. Truth be told, neither of us did, but it was fun to think that for a moment we had outsmarted this damn debilitating disorder, even for a moment.
When reality hit it wasn’t with a jolt, like that day back in January staring at her blotchy MRI, it was with resignation. It was with sighs that it was time again to call the services, make the doctor appointments, locate the providers, weather the blank stares and let go of a silly daydream of living a normal life. We belong here, firmly in the land of not okay, but it sure was fun to run away, even for just a little while.
Greta, I have no doubt you too will want to run away someday. Heck, I remember running away from home at five years old, sheet trailing behind me, arms clutching my important dolls because my mother had done something so unforgivable (something of course I can no longer remember) that I had decided I was moving to the park. Like all moms she not-so-secretly followed me and soon I decided to come back home. I will follow you Greta, if you try to run from this life. Whether you run away from home because I embarrass you at a PTA meeting or you run away from home because you just can’t face one more day in a body that won’t listen to you and running is the only thing you can think to do I’ll be there to help bring you home… when you’re ready (and okay okay I’ll stop wearing those shoes to the PTA meeting, fine!).

Moving and Shaking by mommy Jess

Well dear readers we have a good reason for neglecting our blog for so long because at the end of this month we will no longer be Midwesterners but will become New Englanders. From the large public university to the small private, I have thrust this family into a world of change.

In the past 60 days or so we’ve had a garage sale, did tons of house stuff to get our house on the market, sold it (YAY!) for less than we paid for it (BOO!) but just by a little (YAY?). I’ve written my comprehensive exams, we’ve packed up our house, and we are now waiting for a giant moving van to show up on August 1st and take us away from the place we’ve called home for the past six years.

Moving is bittersweet. With the packing of each room so many memories come flooding back. That first day we turned the key into our very own home. An excited shout down our stairs waving a pregnancy test with two pink lines. The ultrasound that led to the assembly of not one but two cribs. In what seemed like the blink of an eye the change of our baby Jack into a real boy who climbed trees and knew about big boy things like Spiderman and football. The excitement (and horror) of watching my stomach grow and grow and grow. The late nights spent watching reruns of “Three’s Company” (seriously folks that show is really dirty, look into it) while attending to two crying newborns. The tears we cried when we began the long journey to Greta’s diagnosis. The fear we felt and the questions that were, and are, left unanswered hanging always on our shoulders. The hours of therapy, the constant heartache of playing “what if”, and the isolation of being so utterly alone. The arguments, the making up, the laughing, the playing hide and seek, the flowers we picked, the turtle that came by once a year to sun itself on our porch, the thunderstorm that blew our tree down, the dancing in our kitchen during dinner, all of it. The family we were and are started here.

So goodbye little yellow house. It is hard to let it go, but I’ve run my hands over these walls in a silent farewell and a wish of peace and happiness for the new family who will live here and make their own memories in this space.

And after a family meeting that ended with Gus biting Greta in the back, Greta yanking out a handful of Gus’s hair and Jack refusing to remove the skin tight pajamas he’d been wearing for a week we decided against the serial casting I mentioned in the past post, at least until we can get settled in our new home town. We realized that adding that particular adventure in medicine will just have to wait but we promise to keep you posted on Greta’s progress in the future. Right now she is still struggling with her foot turning out and her hand tightening, and after a failed attempt at part-time daycare we decided she would just have to help mommy Shana pack during the day. And by help I mean play with her dolls, unpack packed boxes and demand various snacks and other entertainment all day long. So shall it be for a few more weeks when we can report back on our new lives across the country.

Two by mommy Jess and mommy shana

Quietly, spring has crept into the damp, cold, dark world that was winter. With it comes the good things (green leaves, liberating the children from the house, birds chirping) and the bad (daylight savings time, yard work, and final exams). It also brings with it some uncertainty as Greta will be undergoing serial casting this summer on her left leg. Her tone inexplicably turned so tight in her left foot she began toe walking and turning in her knee causing tibia torsion, or twisting of her shin bones. She will undergo very focused Botox and then her foot will be placed in a cast for 4-6 weeks, changing the angle of the cast each week. Our hope is to correct her gait and get her ankle back from its current 90 degree angle. She will be fitted for new leg braces and night splint after the cast is off. All new things for us, so we spend a lot of time thinking about how we plan to spend the dog days of summer with an angry two year old in a cast that can’t get wet.

But spring brings with it another big change: that’s right the twins are no longer babies, they will soon be real toddlers when they turn two years old. Since they’ve gotten a head start on the terrible twos part, we are actually looking forward to this milestone. We already notice some changes. The difference between playing outside last year (“Gus stop eating dirt”, “Greta you are scooting a hole in your pants”) to this year (“Gus at least eat the dirt from the flower beds, its fresher” “Greta stop picking all my daffodils”) is stark. The fact that the three kids can play outside relatively unattended while engaging in only mild shenanigans is great. It is true that all three seem to always end up naked, and it is true that this isn’t winning us any prizes with our new neighbors whose similarly aged children all remain clothed, but there is something very amusing about watching our three naked butts chatting through the fence with the pristine and slightly scandalized children next door.

So right about now we should say how the time flew by, and how it feels like just last week we were holding a newborn twin in each arm and yelling out the door to Jack to get back in the house and for the love of god stop bringing us worms. However, we don’t feel that way. We feel like it was a lifetime ago mommy Jess was as big as a house (seriously, there are photos but mommy Jess routinely refuse to release them) and feeling the twins roll and kick all night long. We were different people who hugged each other tight and couldn’t contain our excited smiles at 6:00 in the morning as a thunderstorm gathered above us that day the twins were born back in April 2009. That couldn’t possibly have been us. We feel like every day since then has been as long, and as complex, as a lifetime.

In the past two years we’ve learned a lot. We’ve gained so much knowledge, so much confidence, and so much experience but we would be lying if we didn’t say we have lost some too. We’ve lost some innocence, we’ve lost some sweetness, we’ve lost some friends, we’ve lost our world view, and we’ve lost a large chunk of our hearts. But before you write us off as being bitter old heartbroken lonely shrews (okay, that’s pretty close to right) we must say that we feel more balanced than ever before. We suppose we are real grownups now. We feel like we can withstand the winds of winter and still welcome the buds of spring.

Greta, you’ve got two nailed. You are bossy, indignant, insistent, hilarious, unashamed, overconfident, and fearless. You are interested in everything and are able to charm even the most hardened doctor with your wide smile and perfect curls. You have taught us many things in the past two years, but we have the distinct feeling you are just getting warmed up.

So happy birthday Greta and Gus, here’s to two (but just so you know, we will always consider you, all of you, Jack included, our babies forever and ever, regardless of the passage of time).

The "F" word by mommy Jess

No, not that ‘F’ word! And not “feminist” either (as you many of you know I have tedious amounts to say on that subject as well). I’m talking about the future, that ‘F’ word. The ‘F’ word that ranks up there with the four letter version for parents of special needs children as noted by one of my favorite fellow bloggers at Love That Max (http://www.lovethatmax.com/2011/01/f-word-for-parents-of-kids-with-special.html ).

Until recently I’ve been stuck in the past (admittedly a bit too much) with occasional forays into the present. I keep that ‘F’ word cushioned in the safe billows of intellectual cotton in the back of my brain that I call “someday”. This ‘F’ word is dangerous and unwieldy and I rarely let it out to play. It is prone to sending me to dark places, scary places, where I can’t find my breath or stop my mind from racing and asking for the impossible: to know how it will all turn out, to know that if it will be okay.

Instead we dole out our future in tiny portions, “we’ll know more at the next appointment”, “we’ll talk about it at her Individualized Family Service Plan (IFSP) meeting”, “things will be different in the spring”. Always, the future is there looming, but we cut it down into small digestible chunks and have stopped devouring our once spacious overflowing dreams.

Why? I mean, let’s take a quick look. Jack is approaching kindergarten, has made some friends at pre-school, and will ask “why” regardless of subject, from the abstract (death) or the concrete (sunshine’s effect on icicles) till I’m forced to either lie or distract him with something shiny.

Gus is well… Gus. But despite his need to hoard chapstick, credit cards, and sippy cups and his new obsession with holding two of the same item in each hand at all times is at least starting to slow down a bit and use his hands more gently. Sure, he spends most his day in a weird speedo like suit to help his proprioception but he rocks the baby bondage look. And, despite his lengthy stays in time-out, he can dance like nobody’s business (seriously, the kid was born knowing how to do jazz hands) and has come really close to growing out that horrible “Village of the Damned” haircut I gave him.

And Greta: Greta can walk! Recently I learned that her gait is more problematic than we thought and we really need to do better focusing on her hip and knee involvement. But honestly, I am still just over the moon that she can walk! Though her personality may be confused with the Queen of Hearts from Alice in Wonderland lately (seriously, I’m pretty sure if she could she would off everyone’s head and she has the whole family working to paint her roses red to avoid her wrath most days) but we can chalk that up to her reaching the angry toddler phase of life early and thus call her advanced!

So why the fear of the future? If I were to be so brash I’d say our future is so bright we should all be wearing shades.

Well for one thing “wait and see” is the party line of all physicians everywhere when it comes to CP, or even to Gus’s immerging issues. At first it was frustrating to hear, I remember angry conversations in the car following appointments where we lamented, “wait and see, what good is that going to do?! We want answers, statistics, something”. But now, “wait and see” has become like a lullaby. “Wait and see” is the verbal equivalent of a valium, seducing us into a false sense that waiting and seeing is a good idea, heck, even something we are capable of doing. Maybe we should just “wait and see” our way right through till retirement.

Of course that just isn’t possible, and of course the ‘F’ word is still always on our minds, we just don’t speak about it anymore. We aren’t stupid, we know right now that Greta can pass as a clumsy toddler to most onlookers (sans braces that is) but that unless time stops moving forward soon she will be too old to be a clumsy toddler and difference and disability will move from the invisible to the visible, from the private to the public. We aren’t ready for that.

The ‘F’ word feels like we’re tempting the same fates that brought us to this place. We whisper conversations about the future in the vaguest of terms, knowing that naming our plans is like inviting ruin. We have been burned before; we can’t forget what it felt like to talk about the future on our back porch while I was hugely pregnant with the twins and Jack picked us flowers compared to how it feels now. We cannot invite the pain of that comparison, at least not yet, and without the future to talk about anymore, it is kind of quiet.

So Greta, I will confess I spent a great deal of time thinking about the future- most of my life in fact. I couldn’t wait to leave high school, to graduate college, to get my master’s degree, to get a job, to get my PhD, to buy a house, to have babies, to do, well, everything I wanted to do! While all that time spent waiting for the future to hurry up and arrive wasn’t necessarily a waste I do wish I had occasionally slowed down and appreciated the present. But to be honest I just wasn’t made that way and don’t think I could have changed if I wanted to. So are you going to push towards the future always wanting to know “what next” or are you going to stop and smell the roses day by day, I guess we’ll have to “wait and see”.

Resolutions and Reviews by mommy Jess

Not only is it the expectation that one makes New Year’s resolutions (and post them on their blog) it is also the expectation that most blogs offer some kind of year in review, so here you go…

2010 in review:
We found out Greta had a stroke on January 13, 2010 via MRI during a hospital stay spurred by seizures. We were sad to see the actual damage on her brain in black and white, but not necessarily surprised because mommy Shana and I both knew for some time that something was going on with Greta. That day, that moment, when we saw the MRI results, was both a punch in the gut and a relief to finally have an answer to so much worry and wondering.

Since then we’ve been working with therapists and doctors to get Greta up to speed and can report with great joy that she is walking, that she is talking very well, and that she is one of the hardest working babies I know.

In 2010 we’ve traveled to Denver, painted most of our house, watched Gus and then finally Greta take their first steps, heard first words, fully transitioned from “baby” to “toddler”, watched Jack grow into a big boy, learned all about dinosaurs and then Spiderman, we’ve gone to zoos and pumpkin patches and gardens and even Chuck E. Cheese a few times. In other words, we’ve lived our lives.

In 2010 we asked a lot of questions too. Questions about the future, and about the past. We played “what if” everyday (and to be honest most nights too). We dared to feel grief in public and we dared to be angry about loss. We talked about the social isolation of disability and homophobia and we made decisions to make up our own milestones and live our own way whether with friends and support or without. We thought about tone and balance and wondered, always, if we were doing the right thing. We asked nicely, tried reason, and finally begged for people to stop using terms that belittled our child, and all children with special needs, and failed miserably, left to move on knowing that for some the power to dismiss an entire group of people as less than others with cruel rhetoric was more important than being a good friend.

Resolutions:
We’ve resolved to go to more fun places and have more adventures.
We’ve resolved to spend more time with friends who treat our family (all members) with respect.
We’ve resolved to challenge cruelty towards those in the minority despite it making people uncomfortable and us unpopular.
We’ve resolved to eat more ice cream snow and listen to music that moves us whenever we feel like it.
We’ve resolved to be honest and speak from the heart.
And, finally we’ve resolved to find peace, in whatever form, and whatever way we can in 2011.

A very happy New Year to all of you and a very hearty goodbye to 2010, which brought with it every possible emotion imaginable and will be remembered but not necessarily missed.


To Greta:
Greta, what can I say about resolutions? You’ll probably watch mommy Jess make and break many during your life. But, there is something to be said about the smooth expansiveness of the unmarred year that unfold upon us on the stroke of midnight each new year’s eve and here’s to another chance to do things “right”.

The Hard Questions, by Mommy Jess

Parenting is full of hard questions. Until recently Jack was content to talk about subjects but not really question the specifics of how or why. Folks, things have changed. Between trying to explain where the dinosaurs went, why Jack doesn’t have a daddy, and when Santa Claus is coming we’ve been up to our eyeballs in tricky topics. Really, our problem is self inflicted having decided before Jack was born that we would NEVER lie to our children. Cue to November 2009 when we realized that Santa was a heck of a bargaining chip and all our ideals began to crumble. But while Santa Claus seems pretty innocuous, I will admit to squirming a bit on trying to answer questions about death, extinction, family composition, and other recent topics without inflicting some kind of lifelong trauma.

By far the hardest questions Jack has been asking me lately have been about Greta. We have talked with Jack about Greta in the past. He was content with the explanation that Greta got hurt when she was a baby in mommy’s tummy, and because of that she needs more help learning how to do things (roll over, walk, use her hand, clap, etc.). Until recently he seemed to accept this as a part of our family narrative and (bonus) as a reason to be more gentle with Greta and take on the role of her helper at times.

However, lately he has been asking a lot more questions. Early morning or late at night are times when Jack turns particularly introspective. This also happens to coincide with times when I’m under-caffeinated or over tired and thus less articulate than I would like to be. This morning in particular marked a low point in parenting when Jack (after seeing a diaper commercial featuring newborns) said, “Greta was hurt when she was born”. I responded, “Yes Jack, you are right”. He said, “Remember when Greta went to the hospital?”. I said “I do”. He said, “Now she can walk”. I said, “That’s right, she can”. He said “Her hand doesn’t work right, it’s like this (making a tight fist)”. I said, “That’s true, but she works hard to use that hand, and I know you try to help her”. Note: by now I’m starting to sweat, this is a long conversation to have at 6am and it doesn’t seem to be heading anywhere good. Jack said, “I think her arm and leg is still broken”. I said, “They aren’t broken but they do work differently. You know how Greta walks different?”. Jack said “yeah”. Then a pause, a long pause. “I think Santa will fix Greta”.

Oh no, now I’m crying (what can I say folks, did I mention this was at 6 in the morning and he was wearing footed PJs and bathed in the glow from our xmas tree, and looking oh so sweet and certain?). I try to hide my tears from Jack and say, “Santa is a great guy, and I’m sure he’ll bring Greta some special things but he doesn’t really do that”. “No Mommy, Santa comes and then Greta will jump with glee!” (I kid you not, he actually said “jump with glee” I’m guessing this is something he got from school?) “We will listen for the reindeer on the roof and come downstairs and Greta will open her hand like this (holds hand open) and jump like me”. All I could muster was a weak, “I don’t know buddy but I’m glad you are so excited about Christmas” with tears rolling down my face. Jack asked “why are you crying mommy Jess?” and I said, “Because I just love you so much, Mommy’s do that sometimes, isn’t that silly?”. Though fuzzy in my recollection I think we then began a heated negotiation on breakfast, donuts vs. yoghurt, with donuts winning.

What I wanted to say was that I was crying because I still hurt when I think about what happened to Greta for such complicated and nuanced reasons that it would be impossible to explain to a four year old let alone myself. That contemplating wishing for Santa to “fix” Greta isn’t really how I would put it, but asking Santa to make everything okay again does have its appeal, if only things were so simple. That I have been trained by a million folk stories and fables to know that wishing for things always has a price (It’s a Wonderful Life people, ever seen it?) and I’m not willing to bargain with my beautiful family, but even in this place of unstable peace I have painstakingly created for myself I can still get shaken by the “what ifs” and the “whys”.

So Greta, Merry Christmas baby! You have accomplished so much this year I’m pretty sure Santa is ready to blow it out for such a lucky little girl as yourself. Tears are complicated, wishes even more so. So on Christmas morning I know you’ll “jump with glee” in your own way and I’m looking forward to seeing that more than you can imagine. And my Christmas wish is not to turn back the clock or change the way you are, it is only for peace. Peace for you, peace for me, peace for everyone and peace for the world. Got that Santa?

P.S. and if any of you kids ask me where babies come from in the next 30 days I’m going to have a nervous breakdown, or at least take up drinking.

Moving forward....

Mommy Shana was nice enough to update our dear readers with the exciting news that you can walk. What she didn’t have time to say was that you can REALLY walk. You walk everywhere. In the dewy grass, on the fluffy carpet, on the slippery hard wood floor and on the cold concrete of the front porch. Yes, you tumble more than we’d like (shout out to whoever invented surgical glue, you saved us several stitches a few days ago), but you are so happy to finally be able to walk. And we are so proud of you. It was with tears streaming down our cheeks we recorded your first steps and frankly, we haven’t been able to look away at your cherubic smiling face as you stomp along, side by side with your brothers, since.

What mommy Shana also didn’t have time (or maybe the heart) to write is that our family has fallen under some criticism lately. It seems that disabilities are okay to talk about, but only the mysterious blessings and happy moments, not the sadness and frustration. I’ve been a fan of the idea of “both/and” even before it became the most recent feminist battle cry and I stand by the assertion that one can feel great joy and great sadness (get ready to have your mind blown folks) at the same time. I expect you to be capable of such complexities too Greta, and feel it would be a disservice to you to make a blog that merely painted hearts over the hard work you have done and pasted smiley faces over the not-so-fun parts of our lives. So here’s to months of slowly plodding in a circle around our home, sweaty hand clasped in mommy Shana’s palm, grunting, groaning, falling and flailing and somehow teaching yourself how to take those first shuddering steps. And here is to insults hurled at a little girl who walks funny and has lesbo moms and to those experiences motivating us to find exciting new friendships. And here is to being allowed to look back at where you’ve been and look forward toward the future at the same time. I wouldn’t be the mother I promised you I’d be if I didn’t insist that you be allowed to experience all that life has to offer, pain and happiness, longing and motivation, difficulty and ease, love and loss, sorrow and joy.

Both/and.

On the way!

We have about 3 posts almost updated. We got busy and had to keep changing the content!

Oh, also, an important note, Greta can walk!

"Routine Mission" by Jessica Jennrich by mommy shana

So, Jess wrote "Routine Mission", a piece of creative non-fiction around the time the twins were 9 months old. Right around the time Greta was released from the hospital after her seizure. I come off as "bad" in my opinion, Jess says I come off as “accurate”. In the courtroom of our marriage I’ve been proven to be an unreliable witness so I’ll take here word for it. But, I do feel you should know this was a time of great stress and lack of sleep on my part, so it is true that I wasn’t…myself when suddenly awoken, it is also true that Jess was breaking our family rules to let the kids cry a little before rushing in to hover over them (she’s a bit of a helicopter mom). The story is great and accurate and it got published in Paradigm’s current issue (http://www.paradigmjournal.com/ ) and I'm really proud of her. We both got no sleep for longer than we should of but we were in twin hell, it was war, and if no sleep was part of the mission well…mission accomplished!
So, here it is:


Routine Mission
by Jessica Jennrich
He wakes up at night and waits for me under the hall light. Cross-legged on our doormat that leads to the garage. Impossibly skinny and yellow from the color of the lamp. He doesn’t call out or cry, he just sniffles, louder and louder till I hear him and find and carry him back to bed in the dead of night. I sleep with him then, he on the floor in a pile of blankets and pillows, me on his hard toddler bed. The lights blaze and the TV blares “Shrek” for the millionth time. I realize he’s right, the dinosaur bone stickers, nearly lifelike in size, and procured from the museum of natural history to adorn his wall, do take on a supernatural form at night. In the shadows they become three dimensional, grow extra limbs, and look like giant arachnids descending from the ceiling. They startle me each time I awake. It’s depressing to see how far from levity we’ve fallen.
I can hear them too from here. Snorting and tossing and turning like farm animals in their stalls. The infant twins in the room next- door. Sometimes they cry and I’m stuck there contemplating what to do. Should I risk getting up, fixing their blankets, getting them more milk, gamble with really waking them? What if they are just dreaming, tossing in their milky sleep from some infant nightmare? I sweat it out, listen to my heart race and the blood pound in my ears and look down at the floor to see if their bleating and crying is waking him up. For awhile it isn’t. When it does he looks at me for a long time, trying to see if I hear them. He says, “The babies are crying” in a patient way, like you’d rouse a teenager who needs to get up to catch the bus, “Momma, the babies are crying”. He is matter of fact and judgeless at two in the morning, then he rolls over and goes back to sleep in a frightening instant.

It’s clear that only one is crying and it’s not going to stop, so I make my move. Out of his room, stepping over his snoring body and past his dinosaur army. Through the creaking door and into the fuzzy darkness of the twin’s room where after the brilliance of the light that he refuses to sleep without, it is so dizzyingly dark, that I try to overcompensate by opening my eyes as wide as I can. It is the boy twin, sitting up in his crib clutching the bars, crying like a forlorn sailor lost at sea. I give him his milk back after seeing he’s thrown it to the ground, restart the music of his mobile, and re- cover him with his blankets. Smooth the tears from his red cheeks and wipe the snot from his perennially dripping nose. I can tell from the way he balls up his fist and mashes it across his squinted eyes that he will sleep now. I wonder why he got up at all, why he threw his milk, wadded up his covers, began shrieking. I like to flatter myself with the notion that he wants to see me at night, as though he can’t spend a full 8 hours without a glimpse of me, but I think it’s something else. On the bad nights I wonder if he wants to punish me.

I need to make a decision now. Back to bed in the brightly lit toddler dinosaur room? Risk going downstairs where I’ll be so far away from the herd that any little bottle/ cover readjustment will seem like running a marathon? Try going back to my big girl bed with my partner where I could accidentally wake her up? She sleeps like a hibernating bear prone to fits of rage when woken without warning and before she’s ready. I can practically taste the cool darkness and the smooth 500 thread count sheets. But the thought of trying to lie so still and so quiet as to not disrupt her makes my stomach heave, so I head back to the fluorescent den of sippy cups and half eaten bowls of cheese crackers. I take a big risk, I turn off the light. No sign of recognition from the floor. I slip back into the hard narrow bed.

I stretch my body and think that some might say I’m lucky. That I know people who would kill for this, for children, for this kind of needy love. I fall into a deep and dream filled sleep where I spend thirty minutes of slumber trying to find my way through a desert populated by burning sand and twisted trees while helicopters cruise overhead. A war is being fought and I must hide. I awake to a soft mewing that for a minute I mistake for a kitten. It’s her now. Her cries quickly become shrieks punctuated by the meaty thunk thunk thunk of her chubby feet bouncing off the mattress. Back over the toddler, through the creaky door and into the twin’s room where the air is wet with her tears. I spy her stuck on her belly wedged into the corner. Her bottle out of reach and her covers intertwined through her legs. Her head is turned towards the wall and she startles when I pick her up, she didn’t hear me coming. “Shhhh” I say as I put her back down, righting all her parts and tucking her back in, “shhhh baby”. She rips her bottle out of my hand and is asleep before I can even turn on her mobile. I wonder how long she would have cried if I’d have left her like that. Left her to cry it out. Sometimes I do. Their cries mean different things. How much self confidence do you have in your listening skills at 4 am? She can trick me. Her little broken wing and china doll foot, they just don’t let a mother trust her intuition anymore. At least not this one. That is how we got here in the first place, trust.
I trusted the doctors and trusted the books and trusted the relatives when everyone said she was fine. Six months later a chipper neurologist shoved us into an overheated room and enthusiastically pointed to the black blotches on her MRI that showed the damage to her brain from the stroke she had when she was born. It was like taking a bullet. Since then we’ve been spectators of a disaster. Picking up shards of a family. Tucking photos into dusty shoeboxes instead of scrapbooks. Pointing fingers and fighting wars over our kitchen counter. Choosing the color of orthotics and drinking wine on empty stomachs. There is more than one way to mourn a loss, to fight a war.

Toddler is full on snoring. I debate the validity in my head of calling him a toddler anymore. I should switch, I decide, to preschooler. It is much more accurate and after all, he goes to preschool now and is potty trained and doesn’t “toddle” in the least. And just as I’ve decided this I’ve begun to cry, facing the wall on this stiff bed. We have to get up in few hours and do this whole thing all over again, fight through another day just like the one before it. I decide to try and go back to sleep, and before I can even think about whether it’s possible to sleep with tears leaking from my half-closed eyes I’m out. It’s a coma-like dreamless sleep and I wake up to sunlight filtering through the curtains and to the twins chattering at each other like squirrels in the backyard. I walk in to their room and am greeted with identical crooked lack-o-lantern smiles and peed through pajamas. I smile before I’m sure if I mean it.

How we Roll by mommy Shana

Although there isn't as much improvement in your physical mobility as I would have hoped for, I have noticed a significant improvement in our family's mobility and attitude in general. I think I have finally surrendered to the fact that our family will not be able to get around in the same was as other families who don't have the complexity of twins, a 4 year-old, and a child with a physical disability who weighs 29 1/2 pounds and who can't walk or crawl. So instead of doing what is easiest, just staying at home....I have decided that although I cannot change the world to fit our family's needs, I can try my hardest to fit our family into it.

I am beginning to relax a little more and stop caring so much about how we may appear to others. I ignore those who stare or avoid making eye contact with us when we try to talk to them. I used to stress out about outings "Kate Gosselin" style until I realized that not only was my fear preventing future outings, but it was pointless to worry about how others saw us. Reason? People will always stare at us. In fact, I've come to realize that those who are unhappy or insecure in themselves are the most quick to judge us. And really, why should I be worried about them?

It is true that our family gets stared at a lot. Twins alone can cause a bit of attention. But now it's pretty much a given where ever we go. It is the kind of stare like when you see a child riding a zebra through the mall with a hamster in its mouth, in other words, something unbelievable. I can only imagine what they are thinking. My guess is something like this... "which one is the mom?" "why did they have so many at once?" "is that little one an albino?" "are those twins?" "why is one twin walking and the other not?" "why is the girl scooting around in a weird way?" (you don't scoot normally, you scoot in a "wave" motion), "why are they letting the kids eat donuts in the cart before buying them?" "those are not organic cheeze-nips! Don't they care about nutrition?" "why is that 4 year old acting like a dinosaur?" and finally, "maybe this is some kind of polygamous sect".

In the past I would say something if I noticed people staring at us. I would try to explain the situation so they would understand and stop staring "Oh, Greta had a stroke so she can't move as well," "the kids didn't nap today so that's why Gus and Jack are wrestling WWF style", "Jack pretends to be a dinosaur because he has trouble making friends and gets nervous when people stare at him", "I'm giving them dum-dum's because they got shots today." After being greeted with blank stares I've since stopped this over-explaining on my part. I'm not sure yet if this is a geographical thing or just how people are now. I guess to most people, we are weird, that's for sure. But I'm glad we are the family that we are, because I secretly feel that In many ways, we are the perfect family! (shhh...don't tell anyone!)

So here is what we decided to do, for you, for us, for our family. First, we got a wagon and all 3 of you fit! I take you as far as you let me! We go to the local park, mall, store, library, anywhere we want to go. We take you swimming because you love it so much! Even though I haven't been seen in a bathing suit since I was nine I totally rock it in public for you! I let you guys get dirty, I let you scoot around as much as you want and where ever you want! Mommy Jess has even said that she will try to ride a bike again (after a brief hiatus following the rapid birth of three children) so we can have family bike time which I really enjoy! We have decided this family of 5 is going to live life and forget about the mess we make.

On another note, I do have something new to report.....you took 2 steps! Sure, you landed on your face and looked at me like I dropped you and that broke my heart...but you took 2 steps! You haven't done it again since, but at least i got to witness some improvement! You still don't crawl, you don't cruise across furniture, you stand with your legs far apart and you use one hand....all bummers. But no longer can i say your not improving, because you are! You can also go down the stairs by yourself! True, it's not conventional or even 100% safe (you are a bit of a daredevil). But you make it most of the time by sitting on the step and scooting until you fall to the next. The smile on your face during this process makes it worth the risk.

You are awesome Greta. Your the cutest, most precious chubby baby I will ever know. Your personality is coming through and even though you are particularly moody and pissed off lately (but usually only when forced into activity), you are also very content to be alone and to sleep in, something your brothers are incapable of doing and something I appreciate immensely! You are such a cool baby, and it is a shame that your CP seems to be getting in the way socially right now. But don't worry about any of that. Let's just keep going out in the world and being completely free and comfortable with ourselves and our family. I'm not ashamed or embarrassed of our family so why continue to try and "hide" what others see as uncomfortable? I will be me, you will be you, Jack will be Jack, Jess will be Jess, and Gus will be Gus. Nothing more....nothing less. This is just how we roll.