Thursday, January 28, 2010

Harriet Bishop Elementary, Avante-Garde

I've recently been made aware of a practice which, I feel, epitomizes the belief that it is, indeed, the simplest pleasures in life which truly bring the most happiness. Apparently {so the story goes} when you're 6 and the "birthday girl/boy" (or otherwise appointed, one can only assume, by rotation) of your class for the day, you receive the highest honor and privilege of *drumroll* .... smell checking hands after the other kids in your class wash them. Yes. Smell-checking.

Not once. Not twice. But THRICE throughout your bless-ed day!

As you can imagine I was overtaken with the pressing need to give a "Shout Out" to a pioneer in a community of educators who are, frankly, happy to stick with what works. So, I commend you, Harriet Bishop Elementary, for your resolute promotion of value and esteem in our little people on their special days. And let's not forget your commited attempt to maintain a respectable level of hygiene, which I suppose is more than we manage to do with our children on a day-to-day basis.

Albeit a ritual I find bizarre, and, quite honestly, a little disgusting.

Sunday, November 1, 2009

The Best Laid Plans.

I am a planner. That's my sly and subtle way of saying I'm Type A. Type Triple A, even. As my fellow AAA's know, there is rarely a situation which arises that hasn't been planned for. Which we haven't worried about, analyzed possible outcomes, prepared multiple contingency plans for, and executed same, as appropriate, when appropriate.

If asked, I'd still say I'm of the school of the contingency plan. And yet, over the last couple months I've started to grasp how truly futile all of our planning is. How much time we (see how I've ever-so-cleverly lumped all of you into my category?) spend [waste] making lists and carving out blueprints to the tune of 5 year, 10 year and 20 year plans. We live in a nation streaming with outpourings of the widely-recognized phraseology: "it is on my 5 year" or, the ever less hopeful, "it was on my 5 year". This type of talk is a second language to most.

Well: "The best laid schemes o' Mice an' Men, Gang aft agley." [ex. from Robert Burns: "To a Mouse"]

They've gone astray.

Layla was born with a "great" heart murmur (as my Pediatrician ever so gently refers to it *insert eye roll*). While I personally prefer the term "prominent", either way, there's no arguing with its severity. We were immediately sent to a Cardiologist at Children's Hospital (for you Grey's fans: her name is, ironically, Dr. Hahn) as our Pediatrician suspected a hole in her heart. We learned that the murmur presented itself as a symptom of Aortic Valve Stenosis, which basically means that the valves to her heart are underdeveloped and disproportionate with her heart. Over Layla's first year, "Dr. Hahn" has been monitoring her growth and looking for the expected evening-out of the heart and valves. At her last appointment, on August 20th, when there still hadn't been the anticipated development, the Doctor suggested that we schedule an appointment with a geneticist so as to test for any chromosonal abnormalities. That AVS in conjunction with the food aversion, slight developmental delays, colic and irritability, could be indicative of a mild case of Williams Syndrome or Noonan Syndrome.

Right away, I knew. Although a syndrome I had never heard of, it was like I had heard it a million times already in my heart. Without even knowing it, my heart had been in preparation of this for some time.

As one often does when they receive the quiet confirmation in their heart from God, I decided to do some of my own investigative work. I went on to do what any wise person would do: I consulted with the highest-profile expert in the field. Google. I looked up Williams, Noonan and Angelman Syndrome (which also had been thrown in the pot). I merely glanced at the results for Noonan and Angelman Syndrome, but couldn't stop pouring over the pages for Williams. I couldn't help but self-diagnose. The more that I read, the more convinced I became that we were facing Williams Syndrome. I read checklist after checklist, and checked and rechecked my “lists” and it all made sense. The extreme irritability, colic, severe reflux, poor sleep tendencies, low birth-weight, developmental delays, heart problems, chronic ear infections, sensitivity to loud, unexpected sounds. The fact that she didn’t fit our “family profile” and had this bizarre reddish hair and gorgeous blue eyes. The pixie features, button nose, wide mouth, full lips, long philtrum, puffier eyelids, stellate pattern in the iris. I was shocked looking at the many faces of children with WS. They could have been Layla’s brothers and sisters. There were a couple pictures that literally looked like they WERE Layla.

At that point I realized I was walking a fine line between my life as I believed it to be, and my life as I was terrified it would be. It wouldn’t change the love we had for her, or the fact that we would continue to put her interests and needs first. But it would change so much.

Part of me wanted to believe she would be fine and it would get filed away in the "close call" section of my life, but the other part of me wanted to admit that maybe there was a problem. Because it seemed easier to grieve and deal and move ON if that was indeed what I had to do.

On August 27th I spoke with my Pedi and begged her to run the FISH test. There was no way I was willing to wait another 5 ½ weeks until our October 5th appointment with the genetic counselor – never mind the additional 1-2 weeks for the results. She was hesitant to do it, since she didn’t have a background in genetics specifically, and wasn’t able to provide us with the support and resources a genetics counselor could, but I was REALLY REALLY assertive (read: aggressive) with her and she finally conceded to running the FISH test through her lab. More or less, the test was like a rapid strep test, a positive would mean positive, but a negative wouldn't necessarily mean there wasn’t something wrong with Layla.

She went in the next morning for the test. Later that evening, we received a call from the clinic saying we need to come back immediately and have her blood re-drawn, that her calcium levels had come back higher than the normal range should be. I had read that high calcium levels was charachteristic of WS, and felt like this alone was all the confirmation I needed. We brought her back the next morning, just to make sure the calcium levels weren’t just going on the fritz, and they were high once again. A week later there was no surprise when my Pedi called to let us know the FISH results had indeed come back positive for WS. Even though I was prepared, no...expecting...this, it was still very surreal. Despite some of the expected emotions, it was truly nice to have the formal diagnosis, even though it just confirmed what I had “known” for weeks, I felt like armed with a diagnosis I could begin to deal with everyone else around me. There really is no explaining that to someone else. And many of the people around us were of the opposite mentality: you.don' I guess, as a mother, you DO know. And ultimately, the results wouldn't change what had or hadn't already occurred genetically with her.

One of the initial challenges was processing that something could be wrong with our baby when she had already been stamped and processed: "HEALTHY" after delivery and we had been sent on our way. And some days are harder than others. For some parents, this may be crippling. This may be their: "thing". I guess...there are things that I feel like could break me. Things I don't know how I could recover from, if I could recover from. Thankfully, this isn't it. For me, the hardest part actually isn't having a child with special needs, but has been having a child with the health concerns which are associated with Williams.

The WSA says that Williams Syndrome is a rare genetic condition which is known to occur in approximately 1 out of 10,000 births. In most cases, it is a completely random occurrence, where there is a gene missing on the 7th chromosome. While this deletion always has an affect on physical and mental development, there is an extreme variance between cases. This quarantines us to a wait-and-see purgatory which, and I'm sure my fellow planners can empathise, I am not unusually fond of.

The SVAS remains the greatest of my concerns, especially after seeing some other parents who have lost their little ones in the surgery sometimes required to correct the problem. It has hit too close to home for comfort. Of course, the immediate thoughts that she many not ever accomplish the many dreams one has for their daughter: going to college, living on her own, getting married, (and most importantly, having a job which can pay our nursing home bills someday) made me sad. But then it dawned on me, that there's no promise our older daughter Madison may accomplish any of those things, either. We really have zero control over what our children will do, whether they are high-functioning, or face more challenges than their peers. Of COURSE if someone handed me a magic wand and said I could give Layla a life where she wouldn’t have to face these challenges, I would use it! But then again, if I did…then where is the Grace? I was reminded that God is in complete control, and it was like the first time I realized it, all over again. (what?? I’m not in charge?!) It was kind of a: "HUH." moment for me. I'm still processing that!

Joseph Campbell said "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us."

So, I’m letting the life I’ve “planned”, go.


I’m *trying* to let the life I’ve planned, go.

I’m *thinking* about *trying* to let the life I’ve planned, go.

[I suppose that's a more honest representation of the transition phase I'm in.]

Matt and I sincerely believe everything God allows into our life has a purpose. If we believe everything we say we do, if we truly believe that God only gives us what we can handle, and that she was given to us for a reason we may not yet understand, in the end it will all bring Him glory which is really what it is about. At the end of the day, she is still Layla, and has been such an amazing blessing already. Everyday she teaches us, and she is only a year old! So onward and upward. I am excited to watch her life unfold.

My little Laylove, you are a gift.

Monday, October 19, 2009

Times - Tenth Avenue North

I have found this song extremely poignant over the last week or so, there's really nothing more I can say today other than what Tenth Avenue North has already said so well in their song: Times.

I know I need You
I need to love You
I love to see You, but it's been so long
I long to feel You
I feel this need for You
And I need to hear You, is that so wrong?

Now You pull me near You
When we're close, I fear You
Still I'm afraid to tell You, all that I've done
Are You done forgiving?
Oh can You look past my pretending?
Lord, I'm so tired of defending, what I've become
What have I become?

I hear You say,
"My love is over. It's underneath.
It's inside. It's in between.
The times you doubt Me, when you can't feel.
The times that you question, 'Is this for real? '
The times you're broken.
The times that you mend.
The times that you hate Me, and the times that you bend.
Well, My love is over, it's underneath.
It's inside, it's in between.
These times you're healing, and when your heart breaks.
The times that you feel like you're falling from grace.
The times you're hurting.
The times that you heal.
The times you go hungry, and are tempted to steal.
The times of confusion, in chaos and pain.
I'm there in your sorrow, under the weight of your shame.
I'm there through your heartache.
I'm there in the storm.
My love I will keep you, by My pow'r alone.
I don't care where you fall, where you have been.
I'll never forsake you, My love never ends.
It never ends."

Sunday, September 27, 2009

Happy Birthday Precious Layla!


Happy Birthday Layla, 1 year today.

What a year. I thought it only appropriate to write you a love letter (ala Facebook and Blog Declaration) filled with your loveable qualities, must-not-forgets, and of course, many quicks, idiosynchrasies, and nuances, which, even with highest hopes, I know will never truly encapsulate the journey we have been on with you over the last 525,600 seconds.

You entered this world mouth-first. One can only imagine you take after your father in this regard, as I frequently find myself speechless and without opinion. 11 minutes of pushing and you came out an angry shade of purple, arms and legs outstretched as if about to launch off the nursing basin into a cartwheel. Screaming and shouting you told each one of those nurses about “it”. At 5lbs 13oz everyone was amazed at the choice words machine-gunning their way out of such a little thing. You had a shocking amount of dark black hair which we have yet to figure out. I perused the mental family tree and still cannot find a genetic link. It has since turned to a nice shade of strawberry blond (read: RED) which has brought an equal amount of confusion. Along the lines of non-conformism, your eyes refuse to budge from their original blue, although I promise I am diligent in checking them for change every morning, noon and night. And not to worry, my dear daughter, ALWAYS in good lighting [which all resourceful mothers know can only be found directly under the many fluorescent light bulbs in the bathroom].

You really don’t know what to expect when you have number 2. Scratch that. From the first positive pregnancy test you know *exactly* what to expect. Like every other mother of one, you know to expect that this pregnancy, birth, and child will follow in the path which has been worn with meticulous love by your firstborn, specifically for the purpose of predictability in rearing your second. My precious baby, I wouldn’t trade it for anything, you set to pave your own way.

Let me count the ways.

You make no apologies. This is one girl who *knows* who she is, and what she wants [and how she wants it, and doesn’t want it, and when she wants it]. So many times we remade imperfect bottle after imperfect bottle. A future meteorologist in the making, you could tell the temperature of the bottle with an astute precision worthy of high-paid experts. I’m talking to the tenth of the degree. Impressive stuff. In your very early days, you were wise to our ways and knew the car seat was just another method of confinement, but we quickly learned if we gently rubbed a soft blanket on your face at the exact moment we were trying to buckle you in, you would humor us and allow looming entrapment. However. That blanket rubbed ever-so gently on your bless-ed cheek had better be the softest blanket we could find in the state of Minnesota, which only Petunia Pickle Bottom knows how to make, and forgoodnesssake, make sure it’s the SOFT side, people. The fuzzy side doesn’t sooth. It agitates. And rue the day one attempts the cheek-rub with a minky dot blanket. Oy! Later, you learned to enjoy said imprisonment, as you realized you could kick your legs to rock the seat. “Does seat have a motor?” A question we received more times than we could count. They also told us you were smart and they’d never seen a baby rock their own car seat like that. As you can imagine, were increadibly pleased to have a genius, car-seat-rocking-baby, on our hands. Despite the endless hoop-jumping, my stomach gets all bubbly picturing who you are going to be someday, the woman you are going to become. I know that particularity transforms to passion. Preference will make-way for decisiveness. You will be sure. You will stand your ground. I simply.cannot.wait.

We’ll call you spirited. From the moment we brought you home, you have challenged us in every area. I am better mother - no: person - for the patience I have developed, the strength I have earned, and unreserved abundance of love I didn’t know I had to give. It immediately dawned on us that it was impulsive, perhaps even foolish, to name you based on what you “looked like” (let’s be honest: a smushed, squishy face, toothless, wonder). But what are love-drunk parents to do? So Layla it was, and Stella the nickname remains, as it is so much more fitting and indicitive of your spirit Someday, perhaps a crisis of identity, but at least for now, you go by both. As many dogs have for generations.

Sense of humor abounds. While, as previously noted, you obviously take after your father in ability to reach decibels harmful to the ear, not to mention a constant stream of things to say, but I relish in your apparent inheritance of my spot-on humor. At 3 months you would shake your head no at us (even when the answer to the question was, knowingly, yes), and then, with perfect comedic timing, smile and laugh at your own sassyness. You could be screaming hungry – and we would still hear the oh-so-familiar and abhorred sound of your little sausage fingers squeezing the nipple of the (more importantly: full and not eaten) bottle until it would slip from your grip and drop on the floor, only for us to rescue it and return it to your gleeful eyes and open mouth. Rewind. Repeat. With a smirk on your face, you would watch us tiptoe about, speaking in hushed tones as though you understood the nervous strategizing of a 26 and 29 year old on how to bathe, diaper, dress, and get you to bed within a reasonable timeframe, with a minimum amount of fit-throwing. Even before you could laugh, we could feel you laughing at us.

You keep me on my toes. You grab hair, earrings, necklaces, glasses, and anything else shiny, glittery, expensive, or otherwise imperative for functioning on a daily basis, with an impressive stealth and surprising agility. I can only imagine that soon grabbing and stealing will turn to grabbing, stealing AND sticking these things in your own nose or ear holes, garbage cans, sinks, or the worst offense of all, down the toilet. At least when your sister would steal my wedding rings, she would only hide them in the same spot under her bed like a dog burying its bone for later retrieval and enjoyment. You, I can only imagine, will present many a scavenger hunt [and hours of fun] to various locations for lost and essential items in the years to come.

You change for no man. Despite some intense heart-to-hearts, and even after resorting to threats made with plastic spoon in one hand and jar’o’squash in the other, you refused the food. You make zero efforts to hide your obvious displeasure, which is recognizable by your clearly stated, Velociraptor screeches and dramatic choking sounds (even when the food was but a drop hanging from your lip). The Ace of hearts in my pocket was peer pressure. If you’re going to be on Team Jentz, then a love for food is not optional. A threat to which you played no heed. Your lack of concern for peer pressure will be a strength which will make mama proud someday when all the other 5 year olds are eating glue and sand, but for now, I wish you’d bend ever-so-slightly to my devices.

You have so much love to give. You are a true nurture. Since you were big enough to know what a doll was, if you so much as caught sight of one out of the corner of your eye, it was like a light switch going on. Your arms would shoot out and start to flap wildly in uncontrollable excitement, as if preparing to take flight. Reaching your chunky fingers around either side of their throat, you’d ecstatically shake the life right out of them. Your mouth would open wide and you would put as much of that poor baby’s face into your mouth and bite down. Hard. We know, sweet love. You’re just giving kisses. But soon mommy and daddy are going to have to cash in our stocks and bonds to replace all the cherished babies whose faces you have eaten off.

I love the way you channel a little Maggie Simpson when it comes to your pacifier, the way your second toe curves against the remaining 3 like your daddy’s, how you’ve been teething since day one but still don’t have any teeth, and how you rock your exersaucer in a way that brings concern for shaken baby syndrome to a whole new level. There are so many more things, too many to write about, but these are some of the ones that can easily slip through the cracks of a mom's memory. Things that I adore and are so individual to you. All and all, I’m super mushy over every little piece of you. So many things remain unknown about your future, who you will become, what you will do, but you are an amazing blessing on our lives.


I think we’ll keep you.

Sunday, August 23, 2009

Maxima enim...patientia virtus. Patience is the greatest Virtue.

William Langland!!! You and your poem!

My mother's words still ring in my head (and, admittedly, find their sneaky way out of my mouth): "Patience is a Virtue." "Jennifer...Patience is a virtue." "Patience is a a virtue...a virtue...virtue..." [yes...that is a literary echo. In my mother's voice.]

Well what if I'm feeling slightly less than...virtuesque? What if I'm fairly certain if I went for a walk I'd stumble upon Sri Lanka prior to locating my patience?

I suppose that's why the phrase exists, a much-needed reminder one should hold in the back of their mind, for retrieval when necessary. As it is something which isn't completely natural, something that doesn't come easy, something one can only aspire towards attaining.

So today I aspire.

God grant me patience.

Wednesday, August 19, 2009

Practice makes Perfect.

My Layla is a perfectionist. There is a rumor floating around that "the apple doesn't fall far from the tree", so I can't say I'm surprised.

Babble, she will not. Prattle on, no sir. She picks one word. She then must practice and perfect, practice and perfect. Once practiced and perfected, she continues onto the next one word. Practicing and perfecting.

Since I am, assumably, her favorite, it was fitting she would elect to speak "mama" first. Great jubilee!!!! (!!!!) Elated, I bragged to Matt at every opportunity and then would turn to Layla and instruct: "SAY mama." I executed this in the singsong manner which we all know "SAY mama" requires, and I made sure to do it an obnoxious number of times a day.

Well, let me tell you. Layla the perfectionist a/k/a Stella the tease. After practicing and perfecting, she then set her sights on: "Boo-Boo" (her pacifier), "Ba-Ba" (bottle), "Not Applicatory" (although advanced, she must have picked up on it because of the frequency by which it is used in the Jentz household), and since then, trolled her way along the banks of all other potential acquisitions, and has settled [*no the connotation this word holds has not escaped me*] on "Dada".

The first time I heard her say it, we were playing on the floor (serious fun to be had for all), waiting for Matt to come home. At that moment, she made her request known. "Dada??" It genuinely melted my heart, as I knew how much it would mean to Matt that she had finally said it. I couldn't wait for him to get home so, together, we could pay homage to the phenomenon which is our daughter. [Yes, I realize this isn't entirely evidentiary of groundbreaking genius. However, when you have children, or if you already have children, you realize that everything they do is the most.amazing.thing.ever. Even their poop faces are precious and "awwwwww"-invoking in their own way!] While I am not [altogether] selfish, since that fateful day, I can't deny it conjurs a lemon-juice-on-my-papercut-sting that she has continued to master, moreover master with exclusivity, Dada.

Blessed with the gift of insight, she knows what I desperately am waiting to hear. "SAY Mama," I instruct. Her smirk breaks into a squeal of glee and she proudly responds: "Dada." Now, I am a patient person by nature, as many of you know, so I breath in and smile BIG at her so she can be confident I love her to the moon and back, despite the fact that she chooses to torment me. "SAY Mama." Laughter, followed with: "Dada."

Oh Stella, you know exactly what you are doing. I hereby make the following proclamation: Although you have managed to to beat me in the battle of wills today, "if at first you don't succeed, try, try again". And, in the meantime, I must admit I slightly enjoy our game [me providing you endless hours of amusement at my own expense] because you are just so stinken' adorable when your nose crinkles up and your right dimple appears [as you taunt me].

I am not worried. I'll find a way to outsmart you, yet. See, the thing is, my skilled little protégé, as far as the outsmarting goes, I am ahead of you in both areas of practice and perfection, by...oh...26 years, 5 months.

Tuesday, August 18, 2009

Desperate times call for desperate measures.

For any of you who have a cranky 10 month old, I am about to share a secret with you.

When playing on the floor with even her favoritest of favorite toys has grown old, and bouncing in her exersaucer has lost is charm, and she looks at you with frustration instead of ecstatic anticipation as you throw her into the air over and over and over again. When her squawks turn to screeches which border on screams of perpetual irritation, there *is* one last option.

Now, don't let its title fool you. Trust me on this.

It's catchy. It's Polish. And it helps Stella chill.the.heck.out [and she is ri--ley]. I mean, really. What more could a mom ask? It has taken me 10 months of Layla's life to locate this treasure. All of the legwork has been done. I now fast-pass you to just about 3 minutes of unadulterated contentment. And the best part? The fun never has to end when there's a "Replay" button.