Blog posts by mommy Shana and mommy Jess

Three children, two moms, one C.P. diagnosis....and a partridge in a pear tree.

Saturday, December 24, 2011

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:

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.

Sunday, December 4, 2011

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:

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.

Stumbo Family Story

Sunday, November 27, 2011

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

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

Sunday, November 20, 2011

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.

Tuesday, November 1, 2011

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.

Saturday, October 15, 2011

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 ( ), 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.

Sunday, October 2, 2011

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.

Tuesday, September 27, 2011

Baggage and Belonging by mommy Jess

Edited to remove past suggestion to visit a blog that is now a vehicle to self published products...sorry readers, it was a good post but not worth the flash load and the self promotion.

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!).

Monday, July 18, 2011

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.

Saturday, April 23, 2011

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).

Tuesday, February 1, 2011

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 ( ).

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”.

Monday, January 17, 2011

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.

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”.