Being Noah

I've been thinking a lot about Noah and his diagnosis. We see evidence of it every day, at every activity from eating to dressing himself to playing soccer in the backyard. MD (Myoclonus-dystonia disorder for the uninitiated) is part of our daily existence and many times I forget. I forget that he has a condition that will never get better. I forget to not yell when he trembles and spills his milk (often) or his spoon suddenly flies out of his hand onto the floor. I forget to not scold him when he's stumbling on the soccer field, attempting to cover his missteps by acting goofy. At almost five years old, he's a master at redirection.

"Mommy, what do you think runs through the pipes underground or through the walls? Is it only water and gas or is there electricity? Does it have a color? Or a taste?"

"Focus on your scissors, Noah. Open, close, open, close. Hold the paper with your free hand. Like this."

"Mommy, when an astronaut goes to outerspace, how long does his air supply tank last? Can he REALLY do backflips in the air?"

"Noah. Pay attention to your task."

"I'm done with cutting now."

His handwriting is atrocious, he can't cut a straight line for the life of him, he despises "art" at school, he will NEVER choose crafts over...anything else.

But he's perfect. He looks like me but is his father's child. He may have inherited Tim's rare genetic mutation but he also inherited his wicked sense of humor, his curiosity and inquisitiveness and his talent for making friends. Noah reminds me that you never know what you're going to get and, sometimes, what you get is exactly what you always wanted.

Vacation all I ever wanted

This is an extremely self-indulgent post but I'm trapped in my cubicle right now, haven't seen the sun in months and am about to run screaming to the airport and demand to be boarded on the next plane to Tahiti. In lieu of an imminent arrest for attempting to illegally board a plane, let's talk travel. Otherwise known as: I'm going to tell you where I'm going this year and then you're going to tell me where you're going.

TOMORROW:
Lake Geneva, Wisconsin. Specifically, we're taking the kids here. Perhaps because we are overindulgent parents who jump when their young son comes home from school one day in the middle of March saying "Mom, all of my friends are going to Florida for spring break. Where are we going?" *cue frantic internet search* Seeing as flights to Florida were turning up in the thousands of dollars range to fly all of us down there we settled on a Midwest indoor water park. A "stay-cation" if you will. Or a "Mom and Dad are totally poor since we're trying to build you the most amazing playroom/basement in the entire world". Yeah, more like that.

JUNE:
San Francisco, California. IMMA GOIN' BY MAHSELF. My oldest, dearest friend Tina (seriously...I've known this fabulous chick since we were 8) is having herself a wee baby girl in May and I made it my mission to get out there to see Baby P as soon as possible. I'm so excited to snuggle and snuffle and snorf that baby and possibly steal her away in my suitcase. I will also get to see some adorable and fantastic bloggy/twitter friends and I LOVE WHEN THAT HAPPENS.

JULY:
Indiana Dunes. Beach Weekend 2013. We do this every year but in the past it was just for the day. This year we decided to go for the whole weekend and we're going to meet up with a couple other families and it's going to be so much fun. Splashing and beaching and sunning and just all around break from the Big City.

OCTOBER:
Charleston, South Carolina. Oh yeahhhhhhhh. THIS.  Last year was New Orleans (never did write that recap post, damn) and this year we're going to SC and doing it up right. I hear there is lounging planned. With some more lounging on the side. I leave on my birthday which means that all the ladies there are going to witness my birthday antics. They better come prepared for cocktails and cupcakes. Many cocktails and cupcakes.

I hear it MIGHT reach 50 degrees this weekend but I won't hold my breath. Oh wait, yes I will, underwater at the water park looking for the baby's pacifier that she will use as a Make Mommy Practice Diving Device. Should be wicked fun.

Any upcoming travels have you kids all in a lather?

Back in the saddle

So, um, that was a bit of a blogging break wasn't it? I won't flatter myself that anyone was waiting with bated breath for me to pour forth a few typed characters in this space so let's just say hi again, get reacquainted, and hope I can manage a post here or there.

A few random tidbits:

1) We're on Step 2 of 3 in the Great Basement Renovation of 2009 2010 2011 2012 2013. Oh, look at that, it's been going on for a while. There was that whole Recession nonsense that put the project on the back burner but November 2012 kicked it off with a big waterproofing job (Step 1). Let me say this: there is nothing like spending the equivalent of a tiny country's GDP on something that you will NEVER SEE. I prefer my money to show itself in pretty couches or possibly a nice light fixture instead of drains and concrete and plastic. But it's done and if that damn basement ever floods again I have a warranty and someone to blame. Step 2 is a brand spankin' new polished concrete floor that should be done when I get home from work TODAY. And an empty bank account once again.

 Photo prior to final finish coat. It doesn't look like much now

but this is a HUGE improvement over the Before.

2) That leads me into Step 3 which is walls. Our basement needs some. Correction: we have walls but they are of the foundation variety and not the wood and drywall variety so we need to build some new ones. The best part, or perhaps the scary part depending on your point of view, is that Tim plans to build said walls himself. With his hands and some power tools and a saw. (I'm in the scary camp.) We've received a number of estimates from contractors and no. Just no. Many, many dollars worth of no. At least if we want this project done this year. So DIY it is, friends. To be clear, *I* am not DIYing shit. I'm the Pizza Ordering Gal and the Point At Stuff And Tell You That You Are Doing It Wrong Gal. Tim is super excited about that part.

I do believe Tim will be contacting his former brother-in-law (a carpenter by trade) to assist with said wall building but I'm not really sure. I just anticipate a stack of lumber showing up someday soon and losing my husband to the dark depths of the basement for a while. If it means a usable basement in 2013 then I fully support all construction efforts and will order pizzas accordingly.

3) The part-time work schedule is going swimmingly. I love love love walking Noah to school three days a week and hobnobbing with the other (mostly SAHM) moms and dads. I'm slowly getting involved in the parent-teacher organization and the parent fundraising arm and this is totally my bag. The Former Sorority President in me loves this shit. Plus my (lovely and fabulous) next door neighbor is on deck to be her school's PTA prez next year and I can't let her upstage me. I'M ON YOUR HEELS, WOMAN.

4) 18 months. This girl is 18 months old in THREE days and oh my god I forgot how evil 18 month olds can be. It's the bipolar-ness of being 1.5 years old. Tantrums. Screeching. Hitting. Scratching. Followed by immediate remorse and screams of "I LAH MAMA!" (Translation: I love Mama!) "I LAH OAH!" (I love Noah!) and tight bear hugs. It's exhausting. But damn if she isn't the funniest, most expressive and energetic little girl. We all worship at the Church of Chloe and love her evil adorable ways.

 

Chloe, quick, make your Surprise Face!

 

Now give me Sad Face! Excellent work!

5) My boy. He's four (and a half, he'll be quick to point out) and just perfect in so many ways. Kindergarten registration is coming up and my heart is broken for that day to come but full day school in the fall! That just means 3pm is going to be even sweeter when we're reunited and hugging and chatting about our days. Or he'll stomp in, demand a snack, and retire to his room for Peace and Quiet. He's undecided. I'll leave with his latest gem, as told to his nanny today: "I'm going to poop because I'm a man and men poop. It's one of our jobs." His father is teaching him well.

Wrong throne, kid.

See you kids soon. If you're lucky.

(Family photo from our shoot in...September.)

Changes around the bend

A little over a month ago I looked at my fast-growing children, at my ever-messy house, at my piled and cluttered desk at the office and realized I wasn't making it work. On the surface it seemed like I was doing a great job at it all: I was complimented on my ability to "balance" working and motherhood but on the inside I was floundering and falling. Juggling Noah's visit to the neurologist with the unknown of the diagnosis (at that time) coupled with an expected raise not coming through made me stop in my tracks and re-evaluate what exactly I was doing.

What I was doing was barely treading water. And because this is my place to be my honest self, I'll tell you that I didn't spend eight weeks in actual therapy to not learn anything. I learned that I Cannot Do It All. I can't. No one can. And when you finally realize that you can't, you have to make changes. My kids needed me more than I was available. My house, our haven, was looking rough around the edges and poorly cared for. My work was suffering because I couldn't give it the full attention it deserved. Some of you can make it all work and work WELL and I deeply admire you for it. I am just not that person. I admit it and now I own it.

I am lucky though because I now have a choice. Three years ago I didn't have a choice: it was go back to work and help Tim support our family or risk losing too much. So I went back to my former job and it was fine and we made it work and Tim found an amazing new position. We had another cute baby and hired a nanny and chugged along. But it didn't feel good, it didn't feel right, it wasn't working the way I wanted it to work. Tim and I had many a conversation under the cover of night when the kids were quietly sleeping. Do I stay at work? I'm barely making enough to cover our childcare costs (remember: big city=big childcare costs). Do I WANT to work? Yes. All the time? No. Am I doing what I love? Eh. Not really. But it's a great company with a great staff and I wouldn't get the same thing at another company. I fought it and wrestled with it but the decision was made: I had to quit, the numbers just weren't making sense, and it was time to take a break to figure it out.

So I did just that. On Wednesday, October 10th, I quit my job. You would think it ends there, right? Oh no, no, no. My boss refused to accept my quitting at face value. He told me I wasn't allowed to quit, I was too valuable, they weren't letting me go without a fight. I believe I responded with "so...we're negotiating?" and his answer was "give me your best case scenario and let me see what I can do". Believe me when I tell you there is NOTHING like being told you are too valuable to lose to put some pep in your step.

Long story short(ish), I negotiated my way into a part-time position (Mondays and Wednesdays in office, Thursdays from home) and for a higher pay rate. Yes, I lose my health and vacation benefits (Tim's able to pick those up, yay!) but for what I give up I get back in more time at home with my kids. Plus this means I'll actually start to make money instead of throwing it all at our nanny. You guys, I'm really, really excited. THIS is what I have wanted for so long. THIS (hopeful) balance of work and home, me and us. THIS melding of all my responsibilities into something that works FOR me, not against me.

I acknowledge that we are incredibly lucky to be in a position to make this decision, that this is a choice and it's not a choice everyone gets to make. And on the eve of our thankful holiday, I am grateful, oh so grateful. I think these guys will be too.

 

Me in my fancy Blathering outfit...way outside of my comfort zone but I loved it so much (plus fake eyelashes! Who am I?!?)

Blathering recap to come soon.

Diagnosis

Myoclonus Dystonia Disorder. Do you know what that is? It’s a mouthful. It’s also the syndrome with which Noah and Tim have been diagnosed. Tim has lived without an answer for forty years and now he has one. We are so relieved to have that answer.

Let me back up a few weeks. I brought Noah to the pediatrician because I was concerned about the frequency of the high fevers he had been having lately. They had been reaching 104 on a regular basis for a few months and I was worried there was something more going on than just “a virus”. When the doctor asked the weighty question “so what else is going on with him?” I launched into the list of strange movements and tics and jerks he’s been displaying. The involuntary jerking has been going on for a year or so but we always thought it was something he would outgrow. Much like how he slowly mastered running with fluidity, we thought his fine motor skills were just lagging his peers and he would catch up at some point.

But then we started noticing he was having trouble controlling his arms and hands when using a spoon or fork or holding a pencil. His arms and torso would jerk and twitch and cause him to spill or have wobbly letters. He began compensating by bringing his mouth to the spoon or fork instead of the food to his mouth...just so he wouldn’t have to use his arms as much. He began telling me he didn’t “like” to write or color because he couldn’t control the movements. Then his teacher asked us about his eye blinking. The eye blinking tic would start and stop depending on how tired or anxious he was at that time. The start of the new school and getting into that groove exacerbated the tic.

We didn’t run right to the doctor because the symptoms Noah was displaying mirrored symptoms that Tim has had for years, decades. Tim has learned methods of compensating for his tics and twitches but still steadfastly refuses to write by hand unless forced. He spent his developmental years being shamed by teachers and peers for his terrible handwriting and became extremely self-conscious of what he deemed a “defect”. We saw the same symptoms in Noah and after observation decided it was time to bring it up with the pediatrician.

As luck would have it, he got another fever and we already had the appointment for Chloe’s one year well-baby visit. Our pediatrician didn’t seem concerned when I first described his symptoms because he wasn’t displaying them at the appointment...until he was asked to hold still so the doctor could listen to his heart and breathing. Concentrating on holding his body perfectly still caused his muscle jerks to increase tenfold. The doctor didn’t like what he saw and immediately called the children’s hospital for a phone consult with the head of neurology. We had an appointment a week and a half later in an office that can take months to get into. I thank the universe everyday that we have a proactive pediatrician (who also happens to live across the street!) who advocates for us when we need it the most.

Our appointment with the Neurologist was eye-opening. It was in that office that we found out Noah does not have epilepsy (we do have a family history) but has a rare genetic syndrome called Myoclonus Dystonia Disorder. M-D can be passed on by either parent but the children who receive the genetic mutation from the father are far more likely to display symptoms. From NIH.com: Disease characteristics. Myoclonus-dystonia (M-D) is a movement disorder characterized by a combination of rapid, brief muscle contractions (myoclonus) and/or sustained twisting and repetitive movements that result in abnormal postures (dystonia). The myoclonic jerks typical of M-D most often affect the neck, trunk, and upper limbs with less common involvement of the legs. Approximately 50% of affected individuals have additional focal or segmental dystonia, presenting as cervical dystonia and/or writer's cramp. Non-motor features may include obsessive-compulsive disorder (OCD), depression, anxiety, personality disorders, alcohol abuse, and panic attacks. Symptom onset is usually in childhood or early adolescence but ranges from age six months to 80 years. Most affected adults report a dramatic reduction in myoclonus in response to alcohol ingestion. M-D is compatible with an active life of normal span. Genetic counseling. Myoclonus-dystonia is inherited in an autosomal dominant manner. A proband with M-D may have inherited the disorder from a parent or have it as the result of a de novo mutation; the proportion of cases caused by de novo mutations is unknown. Each child of an individual with M-D has a 50% chance of inheriting the mutation. In general, maternally derived SGCE alleles are not expressed and paternally derived SGCE alleles are expressed. Thus, almost all children who inherit an SGCE mutation from their father develop symptoms, whereas close to 95% of children who inherit an SGCE mutation from their mother do not. Prenatal testing and preimplantation genetic diagnosis are possible for families in which the disease-causing mutation is known.

Whew. That’s a lot to digest. What we know: he’s ok. He’s FINE. This is an answer to a question that has been nagging us for a while and Tim for even longer. Noah’s symptoms are still very manageable and may (or may not) worsen as he gets older. Our plan is to monitor him, keep him well-rested (hello, earlier bed time!), well-nourished (more whole foods, less processed stuff...just healthier all around), well-exercised (healthier, developed muscles will give him better control) and partner with his teachers to get him whatever Occupational Therapies he may need to cope with it all. We’re not medicating him because we don’t yet need to...that may be a necessity down the road but until then we’re staying the course. His pediatrician and neurologist will keep tabs on him as well.

Tim has lived with this for decades and has managed his symptoms to the point where they’re nearly unnoticeable outside of those closest to him. I know we can help Noah manage his symptoms in the same manner. It is so important to me that we don’t let him know there is anything “wrong” with him. Not at four. His teachers have been wonderful and communicative and taking action to get Noah the OT he needs. We’ll have a 504 plan in place for him in the next few weeks and that plan is what will tell his teachers how to help him excel inside his “condition”. He will NOT be punished for poor handwriting. He will NOT be ostracized by his peers or made to feel less capable or accomplished. I will NOT allow it.

He’s brilliant, my boy. He’s funny, he’s smart, he has the best and most perfectly timed delivery. M-D will never define him. Ever.

 Bedhead.

Goobers.

Against my nature

In a past life I was crafty. I enjoyed making things and creating and getting covered in paint and fabric remnants. I have a “To-Do” list a mile long and most of the items read like a Jo-Ann Fabrics/Michaels Crafts/Home Depot shopping list:

Buy an old bench and paint it for the front hall! (a graphic stencil??? Yeah!)
Sew a pouf for Chloe’s room
Recover the old chair in the basement
Build shelves in the bathroom nook (aka TIM build shelves--I’ll paint)
Paint the laundry room
Make personalized stools for kids
Homemade thank you cards
Sew Halloween costumes
Install and paint board and batten in front hall--modern cottage style? maybe, hmmm.
Install hooks for coats and bags
Repair bathroom faucet
Paint hallway
Paint front porch columns and railings

And on and on and on. Until recently, I let that list collect dust. Yesterday I threw it away. Yes, there are things on there I still wish to accomplish (hello, front hall organization, I’M LOOKING AT YOU (for the fifth year)) but I realized I have limited time. And limited ability. I don’t like doing projects on the weeknights and at this point that’s all the quiet time I have available. Our weekends are generally busy with social obligations, birthday parties, work and family time (like everyone’s weekends...we are not unique, I know). That is time better spent on those endeavors and less on trying to pack in projects that cause Tim to reach nuclear meltdown.

I’m letting it go. Letting go of the wish to be super-productive and do it all. I can’t. I have time for work, I have time for my family, I have time to straighten up my house and now I have the (small) resources to pay someone else to lighten my load. That is SUCH a freeing feeling. That broken faucet in our bathroom that never had hot water and we lived like that for FIVE years because we thought it was going to be a ridiculous amount of money to have fixed/replaced? The handyman we hired fixed it in 20 minutes and for $50. Bam.

That old, rustic front-hall bench I have been searching for for years so I can paint it and make it look amazing with a stencil or something? I’m going to Ikea this weekend and picking up a basic white bench that will serve the perfect purpose (I might still stencil. I’m not DEAD inside.). Yes, it may not be unique but it’s EASY (minus the visit to Ikea on a Saturday...yikes). While I’m there I’m buying the hooks for the coats/bags and bringing that handyman back to put some wood up on my walls that I will then paint in one night. Voila, front hall organization.

I WANT to be creative and crafty and sew my little heart out but I can’t. And I won’t let myself feel guilty about it either. You all keep pinning on Pinterest and posting your craftiness and I’ll admire it and then write that check to the handyman for doing my bidding. Poor guy, he really didn’t see this coming.

A request for October

September kicked my ass. School started, school stopped (union strike...just super), school started again, work got nuts, work quieted down, work went crazy again, Chloe turned One (more on that later when I can gather my thoughts on Last Baby Turning One), minor breakdown about life and The Future and The Plan, and on and on. Life has been moving at a breakneck speed and taunting me to catch up. I need the month of October to be cool. So, hey, October? If you could just bring the calm and gentle I would be very appreciative.

I turn 31 in two days. Turning 30 didn't bother me or really mean that much...I had a 10 day old baby and a three year old who had just declared that he really wished his sister would go back to the hospital. Last year's birthday was a complete blur of non-stop nursing, sleeping in two hour increments and perhaps there was cake? I really couldn't tell you. My 30th year was bookended with a birth and a first birthday and some good and bad in between. It was a year in which I grew up even more and started to feel like maybe, just maybe, I was getting the hang of this adult business. 31 though...31 is feeling strange. It's not old (oh, I know this is true) nor is it young (say the wrinkles on my face) but it's there. This strange feeling that something is about to happen that will change our course.

What I hope is really nothing is Noah's visit to the children's neurologist on the 9th. We, and our pediatrician agreed, know that he has some conditions that require a visit to the neurologist and most likely an MRI. This is not out of left field and we're extremely grateful that our pediatrician didn't blow us off. While we wait and see what the diagnosis is (if there is one), we would appreciate your happy, healthy Noah thoughts any which way you choose to send them.

Again, October, I'm not asking for miracles or the lottery winnings or anything out of the ordinary...just give me a healthy boy and a some pumpkins from the patch. I don't really need or want more than that. Oh, except maybe an ice cream cake. That would be perfect.