Blog posts by mommy Shana and mommy Jess

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

Wednesday, December 15, 2010

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.

Tuesday, November 2, 2010

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.

Wednesday, October 27, 2010

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!

Wednesday, September 22, 2010

"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.

Wednesday, September 1, 2010

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.

Saturday, August 14, 2010

Balance by mommy Jess


Lately I’ve been thinking a lot about balance. Mostly the kind of balance you don’t have Greta. We’ve been working really hard on trying to get you to walk: hooking you up to strange contraptions, binding your legs with bandages and braces of all sorts, squishing your feet into huge black orthotic Frankenstein shoes, and generally driving you nuts all day. Mostly you trot and bounce and jangle and lean and stagger and collapse into a heap of pissed off baby after a few steps. The thing is, it is clear you want to walk. It is clear you think you can walk. And it is clear you have no idea that you can, and will, fall. Hence you getting so angry at me when I insist you learn that gravity is real. So when you stumble and flail and I (gently) let you fall you cry with the pure tears of a baby with a broken heart. Balance isn’t really your strong suite.


I think about the other kind of balance too. The balance between mother and therapist. The heaviness of my heart when I see you clatter and scramble and twist into knots, looking like a drunk in bar at last call. How easy it would be to just pick you up. How hard it is to make you do it the right way over and over. How much my back hurts from following you around, bent at the waist, holding your hips and trying to get you to feel the floor beneath your feet. How painful it is to watch Gus and Jack run right past you and see your eager face as you try so hard to keep up. How much it hurts to hold you and feel you covered in sweat, sobbing in complete and total frustration at your limitations. How hard I hope that what I am doing helps. How much I wish I could just fix everything.
I think about the balance of time spent. About how many minutes I should spend forcing you to move in a certain way vs. how many minutes I should spend holding you while we look out the window and name trees. How many times I use the sign language we are trying to teach you and how many times I forget and just whisper in your ear. How many hours I spend at work vs. how many hours I spend at home. How hot it is in the car vs. how much you love to swim. Every day is a balancing act.

I think I usually come up short in this balancing act, and that is where you and I are the same. Gravity might be your enemy Greta, but mine is time. So maybe all I can tell you is that balance isn’t nearly as easy as it looks for anyone.

Friday, July 16, 2010

A family mystery: Gus



I'm trying to bring a little humor to your blog since the last two posts were a little depressing. Your moms have found that one way to bring in some innocent fun family humor, is to talk about your brother Gus. Your blog speaks all about how cerebral palsy can affect the life of a child and his or her family.....but it leaves out other disorders/conditions that others in our family are consumed by. Namely, Gus's eremikophobia, a phobia of sand or deserts. It's time we devote a little time to this mental disorder that your brother has, and how it affects our family and his quality of life, including ruined family outings, possible trips to beaches and parks, as well as the social isolation and stares we receive from strangers who can't figure out what Gus's problem is. Now, I'm not exactly sure if eremikophobia is the correct term or spelling, but none the less Gus screams when in sand and sometimes even just when near it. He lifts up his legs, screams, shakes, points at his family to save him, etc. Even a blanket sometimes isn't enough to convince him that the sand won't touch him. In my opinion that's a serious phobia. Especially since the sand is safe, made more obvious to Gus by the fact that his brother and sister spend hours playing in it next to his screaming face. No amount of encouragement or assurance can get Gus to accept sand into his life.....this is why we call him a eremikophobiac, or in other words, a sand phobic freak.
Many times we have had to leave a nice park, and we don't even attempt to go to any type of beach as we know that Gus will have one of his "episodes." Families stare at us with looks of confusion and terror as your brother screams near sand for what appears to be no apparent reason. We know this is mental, we know he can't help it, he may have even been born this way....we love him the same. But Greta...Just so you know, you are not the only person who has a condition that is unknown in origin, and can make certain situations or parts of life, a little tricky. There is however, a chance that Gus will overcome this phobia and a good chance that you won't be completely "cured" of yours. Though at this time we can tell you, you get to have fun in the sand with your brother Jack for hours on end, and Gus doesn't because he's sand phobic, he has eremikophobia, and it's humiliating for everyone in the family.

Saturday, June 26, 2010

Good Grief by mommy Jess


What is “good” grief? Is it progressing quickly through Elizabeth Kübler-Ross’s five stages (denial, anger, bargaining, depression, acceptance) in a timely manner culminating in the development of a neat inspirational saying meant to carry you through the rest of your life? “She’ll make her way”, “god doesn’t give you more that you can handle!”, “what doesn't kill you makes you stronger”...... well, you get the idea. Is it coming through something painful with deeper insight into the meaning of life as many books devoted to the subject suggest? I really can’t be sure but I know there is a strongly held belief out there that grief can be good.

I thought the “good” grief was the kind you felt fleetingly. The sad song that made you think of a time in your childhood, the tossing of your son’s too-small shoes he wore as a baby into the giveaway pile, reminiscing with an old friend about your crazy teenage years. All those times we realize we can never go back, that sometimes things are gone forever. To me the “good” was the mourning for time past while knowing you were okay with moving forward into the future.

Greta, I do not have “good” grief. I am not flying through Kübler-Ross’s stages of grief nor adopting some motivational saying to assuage my broken heart. I am reading the disability statement on my class syllabus over and over thinking of you. I am fighting the urge to turn over my table Real Housewives style when I hear a fellow student assert with all the stupid confidence of an unmarred life that “you make your own luck”. I’m sneaking up on our memory box and creaking open the lid to shove your first pair of leg braces in the crack lest I catch a glimpse of the hat you wore when you came home from the nursery. I am eating handfuls of Tums to make the pain in my chest stop. I’m developing a theory about how best to deal with errant fallen tears (don’t wipe just dab). I’m throwing away my lunch because accidentally stumbling upon your birth announcement in my sent box made me wonder if I could ever be that happy again and realizing I couldn’t made my food taste like sawdust. I’m putting on a fake smile everyday from behind my desk, from our kitchen table, and from our living room floor.

But Greta you are not the biggest tragedy of my life. I do not grieve for your existence or wish you away. I would not enter my fictional time machine with the purpose of erasing you. I would change so many things but never would I change you. Between you and me, those “good” grief peddlers are liars, and I expect you too to have days when everything feels impossible. But I also expect us both to have those days when it feels like anything is possible too. I can’t offer you a cure to the bad days but I can offer you honesty.

So here’s to all you grievers out there. You will find no inspirational quotes here or promises that time will heal your wounds, just the hope that you get to feel the “good” grief instead of this.

Thursday, June 17, 2010

Walking with Greta? By Mommy Shana


Today is the first day I actually thought about not writing on this blog anymore. Not because I don't enjoy it, or because no one really reads it, but because there isn't much to report. Sure, your growing up, and you do lots of new and interesting things....your just not.... well.... progressing much as far as motor abilities. I'm starting to wonder, if maybe this is it. Sure, their are people who tell us that with physical therapy, blah blah blah, Greta may be almost normal. But I'm also getting from people that you may not drive, you may not walk, you may have very poor speech because the tone in your tongue is so weak. So who's right? Who's wrong? We don't know yet, and for the most part I lean toward the positive outcome. Today though, I'm not leaning toward the positive. We heard yet again, as we have heard from many others before, you have very abnormal tone, super spastic and super weak in ways that make progress slow.
I'm going to try and find something positive to blog about, but until then, I'm just going to stop talking for a few weeks since I'm super sad and frustrated and I need to move forward.

Friday, May 21, 2010

Greta's milestones by mommy Shana



Since your birth, every visit with your Dr. we talked about milestones that you and your twin should be reaching. We went over the growth chart for you and your brother (your always in the 90th, he in the 10th to 50th), and she would ask us if you two were reaching the milestones that were age appropriate, and we would discuss how to help you guys along. After your diagnosis at 9 months, the conversation about milestones for you, has pretty much deceased. Gus isn't pulling up to stand yet, which is a milestone that is concerning for a 13 month old, so we are asked to watch and wait and see if he too may need some type of P.T. for his low muscle tone. We also wait to see if your brother doesn't walk at 15 months. Some kids are slower than others to reach certain milestones, and even though Gus is a little slow and didn't crawl until he was 12 months old, he did reach that milestone before alarms went off, and most likely will continue to be just a little on the slow side.
What I have learned about hemiplegic cerebral palsy, is that reaching milestones on time, for you, is no longer a concern. We don't know when you will crawl, walk, stand, clap, raise your arm above your shoulder, hold or feed yourself with a sippy cup, etc. With your brother there is usually some type of time frame that is typical. There is no time frame for you as far as we know. We hear children like you walking at 17 months or even 5 years (average around 3). We still don't know if you will crawl before you walk, or even if you will crawl at all. For many milestones, we just have no idea. It is very common for typical babies to reach developmental milestones at their own pace, but you will have long passed any of these milestones on the designated time scale, and at this point, not reaching them is pretty much expected.
In some ways I feel relieved. I don't feel that mom guilt like I'm not helping you enough or teaching you enough, or not spending enough time with you. We know why your not reaching your milestones on time now. Your schedule is full of P.T. sessions and O.T, botox and other forms of therapy so I know that we are both doing the best we can to help you reach milestones. It's almost like getting a "get of jail free card" when it comes time to talk about milestones and you. With Gus I often feel responsible (though his 10% short stature has nothing to do with me!), but since he tends to just fall behind a little in only a few areas, I mostly consider it normal and give him and myself a break from the guilt trip.
This last Dr. appt. which was your one year check-up (though you were pushing 13 months), I did start to feel that your other milestones were not mentioned and/or under appreciated. Not so much by us or the Dr., but just by the "basic baby" milestones that are common for children without disability. So for you I have made a milestone chart designed just for you! Of course I can't predict anything or make a fair time frame for which you should complete them, but what I can do is record all the new things that you learn to do, and when you learn to do them........so here are your latest milestones!
1) Spinning: You started this milestone when you were about 11 1/2 months old. While sitting, you take your right foot and propel yourself around in a circle. It's the cutest thing I have ever seen! You do it better every couple weeks. You get faster and faster with time, and have now mastered spinning in both directions! You don't use your arms at all. You just take your strong leg and have it pull the rest of your body in a circle. Your brother doesn't spin like this and I don't think he can. So this milestone is all yours!
2) scooting: Sure, a lot of babies have been scooters. Even I used to scoot before I crawled. However, your scooting is so much more amazing! You move your entire body by stomping your good foot down, then use it to pull the rest of your body. No hands or arms at all are used! I hear this thump thump thump sound, and I know it's you moving where you want to go. It again is so darn cute! You even do it with a little hop motion. I have never seen a baby scoot with one leg across a room with the other one limp and with no arm help used at all. So again, this one is all you kid!
3) Whipping : Now this milestone is a little more subjective, like catching or throwing a ball. Some kids will learn to throw or catch a ball early, and for many it won't really matter when or how good one does it. If a child doesn't learn to throw at a certain speed, it doesn't ring off any alarms. However....I have NEVER seen a baby throw an object as far or as heavy as you....EVER! Your right arm is like a professional pitcher, mixed with the arm of a bodybuilder. It's strong, fast, and has hurt the hell out of pretty much everyone in the family at least once! If you get your hand on the right toy, I have often made sure the family was in a safe place. I bet you could throw a tennis ball as far as me right now, and I'm not even joking. You only use one arm most of the time, and it really shows! Although this crazy milestone is at the cost of your other arm, and part of the reason you have such low tone and weakness in your left (you neglect your left arm a lot) I just want you to know that I wouldn't be surprised if you could pitch the best fast ball in the world right now!

This year you didn't meet your milestones, but it's going to be ok. I've written down the ones you accomplished and that show me that you are making your own way. It's ok if you don't reach the milestones your supposed to reach, or that Gus reaches. What's important to me now is that you are reaching your own milestones, your way, and are doing a damn good job.

Go Greta!

Monday, May 10, 2010

Mother's Day by mommy Jess




A quick Google search disabuses me of a notion I held dear, that mother’s day was just a made up fairytale holiday intended to fatten the pockets of Hallmark CEOs, and rather is something of an activist holiday with roots in ancient Greece. Not the first time I’ve been wrong (quiet mommy Shana) and probably not the last.

At any rate, it seems like at this age mother’s day is less about honoring us, your mothers, and more about thinking about motherhood as an institution. People are fond of asking us what we do on mother’s day (the general public seems to think we must choose one of us to act as “mother” for the day to get cards and presents) as though our traditions would be dramatically different. America in general is fond of breakfast in bed and sleeping in with useless presents and sentimental knickknacks peppered throughout the day. I can’t say we do that, but we do try to get each other things we like or things we need as a way of saying “hey, you loved these kids when they stank, when they cried all night, when they refused to wear pajamas for the 100th night in a row”. “You shared your expensive ice cream you had been saving for weeks, you used the money you had stashed for a tropical vacation on the good preschool, you put on sunscreen, and play in the sand, and buy the expensive juice with the better vitamin content”. And for that I salute you!

Greta, mothering you as a disabled child is a bit different but it is also a lot of the above. Just because we have an extra dash of orthotics and various therapies doesn’t change the nature of what we do. In our backyard our mothering of you doesn’t look that different (“stop biting your brother”, “quit eating sand”, “look Greta, a bird!”) it is only in public when your disability changes things. But before that gets you down consider that this is probably true for every one of our family members. After all in our backyard we feel like a completely normal family but once we leave it becomes clear that two moms is not the norm. Motherhood changes depending on location or spectator, but we don’t change, just the view from the outside. We are still the same people doing the same thing (“Gus quit pulling your sister’s hair for goodness sake!”)

So happy belated mother’s (mothers) day to all moms out there- here’s hoping you got what you wanted for the holiday in your name(s).

Saturday, May 1, 2010

Jack's got her back! by mommy Shana





Since almost the birth of the twins, Jack decided that Greta was "his" baby. In fact, he called both of them Greta until Gus was about 3 months old. Anyway, It seems that Jack knew Greta needed the big brother more than Gus, he new before us....always protective of her, and still, always siding with her over Gus. I wish I knew what it was about her that drew him to her so quickly. He showed her the ropes early on, showed her books, asked to hold her often, took toys from Gus to give to her.....and still, if the two are fighting over toys, Jack steps in and gives the toy to Greta. In Jacks defense, Greta usually has it first and Gus crawls over and takes it. But, Greta is quite the toy hoarder and is a master manipulator. She wants everything she see's, when she see's it, and will stop at nothing to get it. She will point and scream until you get it for her.....and of course we always give it to her, it's not her fault she can't crawl yet and Gus can, so we often give her an extra boost. She may be physically challenged, but she certainly isn't lacking the manipulative skills to get what she wants, that's for sure!

Now, don't think that Gus is in anyway missing out or being left out. Jack is constantly making him laugh, and he and Greta also have been known to make each other laugh as well. I have noticed Gus and Jack beginning to form a stronger bond, so he certainly isn't left of the loop. In my opinion, with Gus's history, I'm surprised Jack plays with him as much as he does. Once on a trip home from the zoo, he cried for 45 minutes straight......we have tons of horror stories about days and nights that involve Gus's constant crying....but we all moved forward, allowing him to be a part of our family, despite ruining almost every family trip, and preventing many others from occurring in the first place. He's a baby so we are willing to all forgive him....we are just not ready to forget just yet!

Anyway, what I want to say to you Greta, is that your brother Jack is a big part of your journey. He is your protector, he defends you against your hair getting pulled by Gus, he always returns toys to you that Gus comes and takes, and he always shares his food with you, even food your not supposed to have. So although it may seem sometimes like Gus has the advantage since he can easily use both arms in combat, and because he can get away from you and also charge at you.......I just want you to know, you have Jack. For some reason he has chosen, on his own, to be your defender, your protector, your advocate, your big brother. Yes, it's unfair that Gus is always at an advantage. But rest assured, you got Jack on your side, always making sure your treated equally, always making sure you get what you want.

So Jack, thank you for being the big brother that you are. I didn't know it was even possible for a first born to be so accepting of younger siblings, especially 2 at once! You make both your brother and sister laugh on a daily basis, and you are always so happy to see them every morning, and after every nap. You always make sure to remind us not to forget them on outings! Though we have never forgotten them, you always want them to join in the family fun.
You surprised me big time with your ability to adapt, you did so better than your mommies. Just like Greta, you are my little hero.....so thank you buddy.

Friday, April 23, 2010

Berber and braces just don't get along...by mommy shana


So, Greta got her braces the day before her first birthday. A few things were wrong with them as far as braces go....long story short she gets another pair soon. In the meantime, these will do their job.....but Greta is certainly not happy about them at all! Once you get them on her, if you hold her, she's fine. Trying to get the left one on is a nightmare though! Her spastic reflex kicks in and it's like trying to force wood to bend. The schedule for the new shoes makes it worse. An hour on, an hour off. So we are constantly putting these things on her and it feels like it's torture on my part, and probably for her as well. The only reason we have to keep taking them on and off is because they are like a new pair of shoes, they leave blisters if left on too long. But eventually she will wear them all day long without the risk of blisters and without the constant on off that she seems to hate. I know she will get used to them eventually, but in the mean time....I'm finding it hard to force her to wear them (mommy Jess is much better at this kind of thing). But if Greta doesn't walk I will blame myself so I will so what the Dr. says is necessary for Greta to walk, and know that every time it feels like I'm torturing her, I'm actually making it possible for her to walk one day, and lead as normal a life as she can. I hope you know I love you Greta, I wish you could understand that I'm making you uncomfortable out of love. And I'm sorry that you cant do your favorite turn-around twist movement in your new braces! They catch on the berber carpet so you can't move around as well.........don't worry, it's summer and we will spend more time outside!
Next up: Botox on May 22nd.

Tuesday, April 20, 2010

It takes a village.....it takes a state.....by mommy shana




If it takes a village to raise a child, it takes a state to raise a child with C.P. I mean this both physically and financially. I had no idea the amount of money it takes to properly care for Greta. Of course we have made many financial cuts in our lives, having twins alone put a strain on things, but we have been so very lucky to have been sent donations that go directly to Greta's care. This has really taken a lot of stress away from our family. We have insurance, and at least for the next 2 years we get help for her weekly P.T. sessions, monthly O.T. sessions, and speech therapy. Of course when she's 3 we lose all that help and she still probably won't be walking either......but I'm not going to stress about that now...really, it's one day at a time over here. Anyway, since the January diagnosis, with co-pays for 3 outpatient procedures, one hospital stay, several medications, several appointments to both C.P. specialists, neurologist, genetics (though this one really isn't necessary anymore), and her regular peds dr., it's really overwhelming. Not to mention we pay a pretty high monthly cost for this insurance in the first place. It costs more than I ever thought possible, and we haven't even got to the real expensive part yet! Obviously we can't afford this diagnosis and have relied on the help of other very generous people and can't express in words how much this means for our family. It means greta gets all the help we can give her. I don't have to skip O.T. sessions or P.T. sessions, or decline a medication for her, or not take her to a specialist we need to. I don't have to ignore the other children or choose which child gets to see the dr. this week, or if we can afford to take Gus in for his 103 fevers or Jack for his allergies. We are making it work, but it takes a village....it takes a state. I don't know many people who could afford this diagnosis, really. Not without some kind of community support. So thank you to all of those who have contributed to Greta's care. I00% goes to Greta.....100%. I used to feel ashamed of myself, because I couldn't give to Greta what she needed....but now, I feel no shame at all. I will do what I have to to make sure Greta can get all the help she needs. She's my daughter, and I made a promise to take care of her when I brought her into this world. For Greta, I will always do what it takes. Sure, I can't spend money on things I once enjoyed, but never will that be something I blame Greta for. I'm happy to give up movies, sitters, alone time with my partner, dinners out, all those things I once enjoyed. I'm happy to swap them for family pancake breakfasts, walks to the local park, playing in our sandbox, watching movies at home instead.........of course I would be lying if I said I didn't miss our old life. And I certainly can't say that the emotional part of this diagnosis hasn't hit our family like a sledge hammer, but I can say that in some ways it has brought us closer as a family. My perspective on what is most important has certainly changed, and probably in a good way.
Your diagnosis is still new to us and was a big shocking surprise, but I promise Greta, we will make it work for you...you deserve what all children with C.P. deserve, the care that is necessary and productive for your future. Already on Thursday you get your knew leg braces! Thanks again to all our supporters....without the individual contributions, and programs like First Steps, I don't know what we would do!

Monday, April 19, 2010

Greta’s Alphabet by mommy Jess



I realize for the sake of readability I should probably elaborate on each of these. Instead, I’ve decided to tell you that this “game” started late at night when I couldn’t sleep. I read an article suggesting insomniacs pick a subject and silently run through the alphabet trying to quickly choose a word to match each letter as fast as they could in order to engage their brain in a repetitive exercise that was stimulating enough to keep them engaged but not complicated enough to keep them awake. Major fail on my part in subject choice. But non-the-less, here is Greta’s alphabet.

A is for Auditory Brainstem Response (ABR)
B is for Botox Therapy
C is for Cerebral Palsy
D is for DAFO # 3 Leg Braces
E is for Electroencephalogram (EEG)
F is for First Steps
G is for Gait
H is for Hemplegic
I is for Infarction
J is for January the month you were diagnosed
K is for Karyotype
L is for Left-Sided Hearing Loss
M is Myclonic Infant Epilepsy
N is for Neurologist
O is for Occupational Therapist
P is for Physical Therapist
Q is for Quadriceps Stretch
R is for Rehabilitation
S is for Stroke
T is for Torticollis
U is for Ultrasound
V is for Vital Body Function
W is for Wait and See
X is for Abdominal and Facial X-rays
Y is for "Your Child" has...
Z is for Zygote which you once were

Wednesday, April 14, 2010

Take that adenoids! By mommy Shana



Today Greta got up (unwillingly) at 6:00am to have her adenoids removed, as well as a tube put in her other ear (she has one in the left already). The Dr. thinks that the adenoids were what was causing the excessive fluid in her ears and ear infections. Of course this means that today....Greta couldn't eat this morning, and if you know Greta, you know this is a problem! To top it off, she had to wait until 9:30am to actually have the procedure since the OR was occupied longer than expected so her surgery was delayed an extra couple hours. After the surgery she slept 2 hours and screamed when she woke so they gave her some medication for pain and she went back to sleep. She's home now and sleeping upstairs. The botox therapy couldn't be coordinated so this means an extra sedation and an extra co-payment. If only the medical community could coordinate better I think it would save many people a ton of money as well as time off work and of course extra pain for the patient. Her botox is now at the end of May since it's not recommended she be sedated again for at least 30 days. I was hoping to have the botox now so she could benefit more from P.T., but a month away isn't too long. All in all, things went well and she came through just fine as expected. The picture above is before her surgery, she wasn't too happy after for a post pic!

Saturday, April 10, 2010

Tone by Mommy Jess

I’ve been spending far too much time lately thinking about tone.

It has been said by many that it’s not what you say its how you say it, and my life is no exception.

It’s not unusual to find me any given weekday morning chained to the phone negotiating an appointment, or meeting or other service for Greta. But what is notable is my tone. I know I need to add extra sweetener to my voice during a conversation with one doctor’s office and play hardball with another’s to get my way. Strike a no nonsense tone with one while chatting about the weather with the other. All these things grease the wheels and help me get what I need for my daughter. It’s not what I say it’s how I say it.

But, I can’t always succeed at bending my tone to suite my will. I respond too quickly, don’t think things through, and God help me with the advent of “text tone”. It seems what I say becomes less important than how I say it everyday. It becomes harder and harder to resist becoming embroiled in email wars over a tiny misunderstanding or to hit send to fast and easier and easier to hurt feelings as a result.

In other tone news, Greta has what is called mixed tone, which means she has both spastic (hyper) and weak (hypo) tone. Her tone is what keeps her from being able to do much of what she wants to do. She spends a lot of time strengthening her weak muscles and trying to get her spastic muscles to relax. It seems we both have struggles with tone, though I suppose hers are much more profound. All I can say Greta, is we work towards our strengths and against our weaknesses everyday girl, and some days are going to be easier than others. Oh, that and knowing how to fake a southern accent while living in MO is priceless if you want to get things done over the phone, but that is a lesson for another day.

Tuesday, April 6, 2010

In the beginning...by mommy Shana

Some of Greta's earlier procedures




Ok, so this is the first post on a blog I have made to track Greta's progress and to share with others (and later ourselves since we are living in a sleep deprived filled tornado!) the obstacles that Greta faces as well as the steps it will take her to make it to those basic milestones we have long passed.  I'm going to try to post once a week, but who knows how that will go.  I want to add lots of pictures and videos along the way as well, hopefully every couple weeks or so.  This is my first and only blog, so it may not be the best and I'm learning slowly by myself so hopefully it will get better with time, let's hope!  The first video is at the bottom which is of her seizure that lead us to her diagnosis by the findings of an MRI (and FYI that's her twin brother Gus screaming in the background).  She was hospitalized for 3 days and had a battery of tests but we got at least part of an answer to what was going on.  Her seizures are benign, which is a good thing.....she will outgrow them by age 6.  Already they are less frequent.  The brain damage shown on the MRI however, is permanent.  We don't know yet for sure how this happened, what we do know is that she had a stroke either shortly before, during, or shortly after birth.  The first clue something was wrong with Greta, in the hospital she failed her newborn hearing test on the left side........she still has nerve damage on the left side, and we are still not sure to what extent.  So, for a quick review.....we don't know exactly what happened but are getting closer to an answer so that will be discovered on this blog.  We don't know the extent of Greta's hearing loss yet and we don't know at all if her vision on the left side is damaged.  We don't know when she will walk, but are hoping it's by age 3.  We don't know if she will learn to crawl or when.  We have no idea if she will have speech or learning delays, all of which will take time to find out.  So far what we do know, Greta appears to be as smart as her twin brother.  Her right side usually makes the milestones expected such as the pincher grasp so she is progressing.  She is interested in everything and very manipulative, all the important things we wanted in our daughter!  Her left side on the other hand, needs a lot of attention and a lot of work!  Her tone is mixed, both spastic and weak and it's very hard for her to do much of anything on that side.  She can lift her arm slightly but usually just uses it to aid in chewing toys like in the picture on the side. At this time she cannot touch her face with that hand or lift her arm above shoulder level.  She can hold some toys in her hand but she can't reach them and grab them with that hand.  When she does try to use her left side it can be very hard and frustrating for her.  She usually will grab something with her right and and put it into the left hand, but she doesn't use her fingers well, especially since her thumb rarely makes an appearance.  Her toes are constantly curled up as well, and she is lacking sensation on the bottom of her foot.  She may require future medication for her spasticity, and she may also require future surgeries.  Her hips are also pulling out of socket. Really I could go on and on and spend hours talking about this but I'm going to stop and just bring up what we are working on at the time since it can be overwhelming to both write about and understand in one post.   Also, feel free to email me with any questions about Greta!  I'm always happy to talk about her and accept advice freely.  Water therapy and Horse therapy are two things we just learned about and are excited to try.  So if you hear of something you think may help Greta, please let me know!
This week: Greta had occupational therapy this week and was told she should stop using her bottle and start with a sippy cup.  This is pretty usual around one but because Greta has a week sucking reflex and chokes a lot, we need to strengthen her mouth muscles not only for eating, but speaking as well.  She also needs to switch to a bigger bottle that requires 2 hands since Greta holds her current bottle with one hand.  Sure it's kind of neat to watch her do things on her own and totally palm an entire bottle!  But she needs to be reminded constantly to use her other hand and arm.  She also had Physical Therapy this week which she did not want to participate in!  We tried to get her in the crawl position but her legs just won't support it, and her spastic reflex in her arm kicks in and bends toward the ceiling.  She also worked on strengthening her core muscles by using an exercise ball.  She also was fitted for leg braces. More on this below.
Coming next:  Greta got fitted for a hand brace because she tends to keep her left hand in a fist,  the second it comes I will post a picture and this should occur any day now.  She also got fitted for leg braces.  The fitting was kind of like getting a cast.  We got to pick out the color and the socks that go underneath that are supposed to keep her legs from sweating.  The are called DAFO #3.  They basically start below the knee and and strap around the leg, ankle and food.  The woman who fitted her said she would probably hate them at first and that we would start out with an hour at a time until she wears them all day (never at night).  She needs them on both legs so she doesn't stop using the leg with the brace.  As soon as we get them, around 3 weeks, I will post a picture.  She has an upcoming procedure the second week in April for the placement of a tube in her right ear, have her adenoids removed, and hopefully with a lot of luck, a Botox treatment on her left side so we don't have to IV sedate her twice.  Botox will be something she continues to get starting out every 6 months.
Milestones:  Greta learned to roll over at 11 months!  She can roll over both ways.  Just a couple weeks ago she just laid flat on her back, and now she can roll over.....go Greta!
My mood and attitude: Could use improvement.  I saw a little girl who was 2 running through the park and knew that this summer and next summer, Greta most likely won't be doing that.  I'm trying to improve my self-pitty which is sometimes immature and working on growing out of it.  Everyone has problems, every family is different, many children experience hardships........I really need to focus on being stronger for Greta and stop crying about her every time I'm confronted with her disability and hardships which is often.  I guess it will take some getting used to.  I think I'm more upset than she is right now!  In the future I am looking forward to this new life of ours to be the norm.  I never pictured us having a daughter with Cerebral palsy, but who does.  We can do this, Greta can do this.  I know from experience, things could be a lot worse!  Moving forward.......... Posted by mommy shana

GRETA'S SEIZURE AT 9 MONTHS OLD (can also be seen on youtube search as gretaseiz)


Mommy Jess holding Greta during seizure, Gus screaming in background