Mother of the Year

 

I thought I'd let the dust settle from Laura's post a little before posting again. Some because I wasn't sure exactly what I wanted to say, but mostly I wanted her to get the limelight for a while. She doesn't get it much these days. Laura doesn't get much public or direct recognition for this incredible thing she is doing, this  complicated and stressful raising of our son. Mostly she gets work and I get the glory.

I'm out in the world more, have more time to be connected to the internet, etc. I'm the one who gets emails and has people tell me to my face how much they love our blog, how inspired they are by what "we" are doing, how amazing they think "we" are. Each time, I try to stop and remind them how much of the credit goes to Laura, but it doesn't erase the fact that I got to hear it first.

And it's just not right.

Laura has many admirable qualities, but shameless self-promotion isn't one of them. That's where I step in.

Laura has an insane job. She typically works from 6 a.m. to 8-10 p.m. Without breaks. Without feedback. Without coworkers. Without pay. In hazardous conditions (heavy lifting, toxic waste, psychological distress). Without workers comp.

Her job duties include social work, nursing, pharmaceutical distribution, advocacy, chauffeuring, complicated mathematics (to determine calorie counts in blended food), operating heavy machinery, operating highly specialized medical equipment, preparing a specialized diet, translating medical information into plain English, occupational therapy, feeding therapy, physical therapy, medical research, precise time management, cleaning...I could go on for another 3 pages.

And she still finds it in her to be an amazing and present wife, sister, aunt, friend, daughter, niece, cousin, daughter-in-law...

Why does she do this job that none of us would ever voluntarily choose?

Because it needs to be done.
And because she loves us.

I don't know about you, but I think I'd start to crack up after 3 years of this. Laura, however, is maintaining her sanity better than anyone I could possibly imagine in this situation.

But we need help.

I need (and Laura too, though she'll never admit it out loud to you) for people to give her affirmations. Specific ones. Not, "you're such a great Mom". Like, specifically what she is doing that is making an impression on you. It can be here in the comments section, in direct emails, next time you see her, little voicemails, notes in the mail. It can be related to how she's taking care of Simon or it can be what she brings to this planet as an individual.

And I'm not talking about this being a one-time deal. This is what we need on an ongoing basis. More than food, more than birthday presents, more than any of the other things you can think of that you might try to do to help.  Focus on Laura. She might squirm and try to shift the focus away from herself as the humble, slightly shy person she is, but don't let her get away with it. Hook her with a tractor beam of love and get her good.

When you're with her, ask her how she's doing. And listen. Encourage her, in whatever way you can, to talk about how SHE is doing, not how Simon is doing. Doing something almost 24 hours a day makes it hard to remember that you exist outside of whatever it is, or that you're good at anything else. Reminders of what those are would be great.

Sometimes it feels like she's this bright, bright light hidden under a bushel. Sometimes the bushel is mounds of laundry and bags of blended food and fist-fulls of syringes. Sometimes it's the errant wave of crushing depression that comes with the territory we live in. I know the song says that she's supposed to "let it shine" herself, but as someone who adores her, I think it's also my job to help the process along a little.

I'd like to vote Laura Mother of the Year and I'd love to hear why you agree with me.

p.s. If you hear of any opportunities to really vote her Mother of the Year, especially if there's a fun trip she can go on or feature story of her or some other totally over-the-top reward, by all means, share :-)

A few of my favorite pictures of my dear wife

In repose

Hunka hunka burnin love

My personal favorite.  She looks demented.

Just about the sweetest thing ever

Just sort of says it all, doesn't it?

Off Switches and Open Doors

Where is mine? Where is my off switch? I feel like I don't have one when it comes to life these days. Unless I am physically away from Simon (and even then) I feel like I don't ever really get to let down, turn off, stop.

It's a problem. A big one in general, but I'm feeling it more these early days of March. It started to amp up this past weekend. Even with Jaime around, ready and willing (but unwittingly un-awares) I wasn't able to delegate and let go of some of the M-F details that I take care of. I couldn't help myself or my internal clock that tells me it's time for meds, time for a feed, time for homeopathy, time for food play, etc.

And that's how the week began and has progressed since. I am on a terrible auto-pilot. It's to the point that I almost cried when it was my Tuesday 'break'. I had no idea what to do with my 2.5 hours and seriously contemplated staying home (once Simon and Reagan went out to the park) and getting a jump on tomorrow's blended food prep, laundry loads, and calling pre-schools to see if they might be a good fit.

An internal slap to the face and I got out the door to see a bad movie.

But I am feeling a little in trouble here. Very alone and beginning what feels like one of the hardest months thus far. It feels like I don't even have time to reach out, make plans, problem solve. I am at the grindstone and I have to pace myself not to hit bone before this month is over.

*grunt* Laura hard like stone, but wearing a little thin *grunt*

Simon has his IEP (individualized Education Plan) meeting scheduled for the 23rd of March. At that meeting we'll know what sort of services, if any, our school district will be providing once he turns three. Best case scenario is that they will offer him a 5 day a week class that will support his language delays and offer additional occupational therapy within that class time. It would be 2 hours and 45 minutes every day, staffed by trained and credentialed teachers, with no more than 6 students per class.
The very worst case scenario is that they offer us nothing. It's unlikely but not impossible. In between is a scenario where they offer him services in the form of weekly one on one speech and OT sessions but not a classroom- more shuttling for me but not 'nothing'.

However before we get to that, we have 4 assessments added on to our already jammed packed regular schedule PLUS three additional appointments for feeding therapy to try and capitalize on the steps the little man has been taking lately in regards to eating.

It's a lot. It's a lot of minutes in the day and miles in the car and therapists and clinicians and forms and exercises and developmental scales and shit like that. A lot.

I feel incredibly alone. Except for the one person that I absolutely love being around, who gives so much back....but is not the best conversationalist, Simon Lev, I am alone.
For the most part, throughout the day, it's just Simon and I.

When it comes to Simon, I have all the energy in the world, who needs and off switch?

Me. I really need to find it.  I'm struggling and I can't even take care of myself when I am given a moment.

There is so much happening these next couple of weeks (not to mention what's been happening for the last 2.5 years) I feel myself completely lost in it.

Yes, there's the IEP and what will come of that BUT there is also each assessment and what closed door we come up to with that.

Will his PT, OT, Psychological, Cognitive and/or Speech & Language assessment bring up an additional diagnosis? Will his delay in any of those areas turn out to be not just a delay from his long stay in the hospital and fighting for his life when he should have been learning to grasp, roll, speak, ask, etc......but in fact turn out to be a diagnostic code, a long term learning difference, a something instead of just a global delay that can be chalked up to an early childhood medical trauma?

We will walk up to each of those possibilities, Simon and Jaime and I and we will knock on those doors. I'd love for the knocking to go unanswered. That door will stay shut. That one too.

Until we have knocked on every door in our assessment plan and no new labels or codes get passed to us from those doors. Of course Simon will remain Simon throughout. He will say "I love you. I miss you." to each of the people that he meets (that he enjoys) and I will remain his mommy who puffs out her cheeks to be a pufferfish when he asks. 

Still, it's a lot to add to an already full plate. A lot of unknowns. A lot of surrendering and waiting. A lot of possibles. I'm feeling quite blanketed by all of it and not in a cozy way. It's heavy. It's March. The 4th, the 10th, the 15th, the 16th, the 23rd. Blech. Throw in a cardioloy visit on the 28th, plus everything else, what do you have? Blech Blech and just a little more....blech.


April brings my favorite Jewish holiday, Passover. I will be so ready for an exodus from all this.



And then, a simple but profound moment from tonight:

I am putting Simon to sleep after a bath, pm medications, a tube feed, and several books. He is lying in bed listening to my sleepy version of Hokey Pokey holding my arm next to him like a teddy bear.  As the song winds down, I lean in for a kiss when he grabs me from behind the neck with one hand and begins to repeat over and over again "Thank you Mommy, thank you Mommy, thank you Mommy."

He is looking right into my eyes and signing it with his other hand. It's not the correct ASL sign for thank you (which he knows.)  Instead he is putting his left hand over his heart and then extending it out towards me.  Over and over again. "Thank you Mommy, thank you Mommy." I started by saying thank you back. I do it all the time.
"Thank you."
"No, thank you"

That wasn't what he wanted though.  It was subtle but I could tell that he wanted something else.
I braced myself.
Paused.
And then said the harder thing.

"You're welcome Simon."

I think it went on for at least a minute. One of the best minutes of my life.
"Thank you Mommy."
"You're welcome Simon."

Over and over.



And I know that I'm not alone. That I can do this. That he is more than perfect and like Simon tells me sporadically throughout the day....... things might just be "totally awesome."

Here are some visuals:

I think we might just be in trouble

Yes, he picked this outfit out all by himself....to wear out.

A new style has been born

Working on a new smile

How 'bout this one?

Maybe this one?

These boots were made for walkin', that's just what they'll do.

Thanks for coming along

Like The Weather

I meant to sit down and write several times over the last few weeks. Really I did. Alas, we have been super busy with appointments, assessments, meetings, barfing, and feeling just like the weather here in CA.

For the last few weeks we have had heavy gray clouds, mixed in with torrential rain, and bitter cold (hush you Easterners, 43 degrees is really cold here).

And like the co-dependent person I have become, I feel like my son, and evidently the weather as well.

Up until this past Saturday, Simon has been battling the barfs, the bugs, and the 'bummers'. He's had a cold for what seems like forever and the mucus has just thrown him way back in terms of gagging and throwing up. This does not make for easy days and of course less than zero headway when it comes to food; smelling food, seeing food, talking about food, and certainly not putting food anywhere near his mouth. It's been a really rough time , really since he's been sick with pneumonia back in late December.

And, that's been really hard for me. The contrast between where we were at just before he got sick- with the interest, and chewing and swallowing...THAT was awesome!

To have been thrown so far back in what feels like this last area of challenge was harder on me more than anything. Simon is Simon. 30 seconds after he throws up he's fine. He's back. He's ready to move on/try it again/laugh it off.

I have so much to learn from him. And I can only hope/pray that he can hold on to it as he grows.

This little man who has been through so much....knows how to live. He loves life. He hugs people that he's just met. One simple positive interaction with a stranger and he's ready to bestow on them his new favorite phrase. "I love you. I missed you."

Yes, I know he's only almost three, his language is delayed even younger than that, and we're beginning to see some interest in other people's reactions to such things.... but how lovely is it that meeting a new person and loving them is that simple.

How lovely is it that when he feels bad or sick he is right in it AND the moment that he feels better, he believes that the moment has truly passed and can get on with the good stuff.

How nice for him.

I mean that in both ways. Really, how nice is it for Simon, the boy who has endured more discomfort than any one person should have to endure in a lifetime, to be able to have that skill and stay rooted in the 'feel good' times.

And...

How nice for him (dripping with sarcasm an jealousy) that he unintentionally points out to me over and over again that I am still working on this. That I hold on to the barfing/time spent cleaning up from yesterday and feel the weight of it today, spending energy on whether or not it will happen tomorrow.

I know it's a beautiful piece of early childhood development and think Simon's got it in a deep way.

It's my hope that I go on learning it from him and as well I can, mirror it back to him as he tries to naturally grow out of it...the little stinker.

And, like the weather, Simon, and therefore I, have turned a corner. On Saturday the sun came out and so did Simon. No, he has not proclaimed any new sense of self or orientation but the boy is back in a way that we haven't seen since his bout with pneumonia back in December.

He is talking up a storm, making new faces (think Dana Carvey crossed with Jim Carey), saying new phrases (my personal fave is "hold my hand") and ........................EATING!!

Yes, we've picked up where we left off. Almost exactly.

It's like the last 7 weeks never happened and he's so excited about putting food to his mouth and even trying to chew and swallow. Yellow curry, black beans, squash, pasta O's, Salsa, spicy spaghetti sauce, BACON!!!

I am beyond ecstatic. Like the weather outside right now I am feeling the clear skies, the sweet snap in the air, and the sun warming everything. Like Simon I am feeling in the moment, not needing to hold on what might be coming or what has just transpired. It's like some sick Air Supply soundtrack is playing. This is so much better (for everybody) than the Morrissey soundtrack of the last few weeks, and I don't even really know Morrissey's music that well but wasn't it uber depresso?

This is a great way to enter into one of our most interesting months yet. March brings an OT, PT, Speech, and developmental psych evaluation along with observations and the IEP meeting that will decide what services Simon is eligible for when he turns three.

Developmental, medical, financial, it's all in the mix.

So, not unlike another 80's pop reference I do feel a little like I am "living in a powder keg and giving off sparks" but more like Fireworks ala Katy Perry.

That's right, I just brought it to the here and now.

Baby you're a firework

Simon and Manav...swinging at FairyLand...

the only time I'll be able to get away with a caption like that.

A boy, his dog, and a wicked deep puddle

A boy, after a stumble in said puddle

Hunting in the wild

 <3 <3

Good Grief

I don't often drive westbound on Hwy 24 because my regular driving doesn't take me that way. I don't avoid it and certainly have driven it more than a couple of times since that fateful turn around almost 2.5 years ago. That's the route where my Dad and I were coming home from lunch with Jaime, on our way to baby swim class, where I first heard Simon wheeze and decided that it would be best not to put off going to the pediatrician (back in Walnut Creek).

That's where it all started, the exit for Telegraph Avenue off of Hwy 24 (then ER, chest x-ray, life changing diagnosis, ICU, etc etc). One turn around and my life is changed forever.

Today I ended up driving down Hwy 24 as Simon needed just a few more minutes to fall asleep for his afternoon nap. It's a gorgeous day here in Oakland, not a cloud in the sky, with temperatures in the low 60's (sorry rest of the country).

And there it was. That feeling I get each time I drive down that stretch of road. It's like the air is buzzing and I feel time is layered around me (like a nice seven layer cake from the Raleigh hotel where my dad used to sing the High Holidays). It's all right there in front of me, the time before, the time now, the moment of change.

I hate it. I hate Cardiomyopathy. I hate that as I was driving, I was also keenly aware that my son was hooked up to his feeding tube, a larger than normal heart beating in his chest, getting ready to go home and take one of his 16 daily doses of various medications.

I hate the feeling of not knowing if he will be one of those kids that improves until his heart is in the normal function and size range only to decompensate at some point and need a transplant OR if he will be one of those kids that lives with medications and some decreased activity level for the rest of his life but no major change from how he has been since becoming stable.

(Less so these days but still) I wonder if Simon will die.

I can't help myself.

Especially when I find myself right back there at the spot where it all began. Where I first had the very real thought 'I wonder if Simon will die'.

Then, and here comes the feel good part, I thought about how much I love my life.

What?!

Right?! I know.

But there it was. Now I don't want you to think that I wouldn't trade it all in for a minute if there was that choice. No cardiomyopathy for Simon OR love your life right now...derrrr, no contest.

But for that time and even a little time since then, I'm feeling all the good things outweigh the sucky.

I love that my family can spend the day together sick, noses running like Niagara, and still laugh it up. I love that we have family and friends that bring us so much joy (and sushi!). I love that my son spends most of his time being a stellar toddler, smiling, making jokes, and charming the pants off the world at large. I love that I have Jaime at my side to share all this with. Almost nine (very uneventful *) years together and I am still 100% sure that she is the perfect partner for me.
* Italics = intense sarcasm


We have enough. We have more than enough. We rock!

I miss things for sure but I'm feeling a little in touch with the divine right now.

Sure, I can hear the laundry machine is almost done with the first of three loads that I have to do (barfing has not really ceased yet) and a napping Simon is still attached to tube coming out of his stomach for medication administration, but I am more than content. I'm blessed.

PopPop Simon Laura

 Why PopPop is called PopPop

 Dunk!

 Jumping!

 Just Chillaxin'

 Happy Monkey

 Simon discovers Mud puddles

 Where my homeys at?

 Ready to follow the Dead

 First Super Bowl

 So Pretty (he's going to kill us)

 No really, he's going to kill us someday

 Cousin Moses

 The only motorcycle he will ever ride

 Can you see why Wyatt might be a little nervous?



Into the Ocean

 
Long time no write.

Let's see...since we last spoke:

On January 5th, I (Jaime ) celebrated my 35th birthday. For once I took the day off, which I felt I had earned since I spent almost my entire vacation the week before in the hospital. It was lovely.

Two weeks ago, Laura sliced off the end of her thumb (like 1/4 of the thumb above the first knuckle!) when I made her slice lemons on the mandoline. We spent 7 hours in an ER while our friends watched Simon. It was awful (she was in pain and the bleeding took quite a while to stop and I was slightly re-traumatized from being in the ER with her after her head injury) AND we actually got some real quality time together. Yes, quality time. In the Emergency Room. I guess it sounds really sick when you say it out loud. But we actually had a kind of a nice time together, if we ignored the people barfing and yelping in the other bays.

Laura's Dad came for a visit and we had very sweet times together.  Bernie Fitch is a baby whisperer.  Simon was clearly besotted and misses his Pop Pop.

Last weekend we all went to Calistoga to celebrate my birthday and had a lovely time soaking and eating and chatting with friends.  And miracles of miracles, no one went to the hospital on this vacation.

We'll work on photos in the next post...
Now to begin the theme that may continue for a while.  Preparing to set sail in a big, vast, potentially terrifying ocean called the Oakland School District.

Yesterday we had a rep from the Oakland Unified School District come to our house along with a rep from the East Bay Regional Center. The Regional Center has been coordinating all of Simon's services for the last couple of years. Those services end the day Simon turns 3 so we were meeting with the school district rep to talk about all the different assessments Simon will need in order to figure out what services the school district will provide us and what our options are for preschool.

It was great and terrible. The district rep was very sweet AND I kind of wanted to slap her across the face for asking so many questions about Simon's development that we had to answer "no" to.

This is what most of yesterday sounded like:

Her: Okay, lets talk about his blah blah (speech for example)

Me: He talks a lot but he doesn't say much.

Her: Does he ask for help when he can't do something or get something?

Us: No. He may just say the noun. He NEVER says, "Mama/Mommy, I want the ball"

Her: Does he point at things he wants or pull you to something if he wants it?

Us: No.

Her: Can he follow simple directions?

Us: Not really. If you ask him to do 2 things in order, he will only do the last one you requested.  We're working on this.  A lot.

It went on like this for about an hour and a half. A few timeswhat she was proposing that he might do was so preposterous I almost laughed out loud.  Or cried.

About halfway through, we had a classic example of why we're so concerned about his language processing. He made a funny face, so I asked, "Simon, do you have poop in your diaper"? No answer. I ask 3-4 more times. Finally I say, "Simon, do you have poop in your diaper, yes or no". He then cheerily parroted, "Yes and no, yes and no". I asked again. Again, "yes and no". I said, "Which one". He finally says very definitively, "YES!". I go check and of course there's nothing in his diaper. I just look at the district woman and say, "This is what happens most of the time".   Fortunately she is a speech therapist by training, and she said she could really see what was going on.

It was great to know that she sees it  (this sounds awful) because we actually want things to look as bad as possible.  If he's just sort of borderline and is having a good day when they do his assessment, he might not qualify for the services he needs. I was so happy he was doing stuff to show how not typical he is. It's beginning to feel like we're not going to have to worry much about him not qualifying for some of the basic things. His developmental progress...frankly...kind of sucks.

It's SOOOOOOO frustrating to me to have a kid that can talk but that can't really communicate. He has a huge vocabulary but he can't quite seem to figure out how to string it all together to be useful. I keep expecting him to be able to answer simple questions like "do you have poop" or "who did you see today when you went to the park" and he can't/won't. It's making me a little crazy. It's like having an infant in the frustrating ways of not really knowing what they want, but he's 3.

It also makes me concerned that these delays are not from the hospitalization but that he may have a bigger syndrome (I keep wanting to find out more about testing for Noonan's syndrome, for example) that includes Cardiomyopathy as well as cognitive delays. I'm not quite sure what to do about this or if it would even matter in the long run- the syndromes aren't "treatable" and he's already on everyone's radar.

I just want a goddamn answer. WHY!?  Why.  Why does he have Cardiomyopathy?  Why is he so tiny?  Why does he have trouble with his balance and running and why won't he jump and move around like other kids?  Why does he barf all the time?  Why doesn't he eat at all? Why is his language processing so bizarre?  Everyone just guesses at the answers to these, including his doctors.  "He was hospitalized for 4 months" doesn't seem like enough of an anwer for me. I just want one damn piece of drift wood to hold onto. Just one.
 
In terms of what the district may offer, we don't really want him in a "medically fragile" class because that is basically for kids who are really, really debilitated (like on ventilators, not ambulatory, etc).  We also don't think it would be appropriate for him to be in a typical preschool.  Our early intervention program folks (and we are too) are worried that if he goes to a typical class he will getting tagged as the really cute kid who says cute catch phrases all the time and slip through the cracks. 

I think our goal is an enriched speech and language class, which the district offers (a few of them actually).  I know Oakland Unified has a horrible reputation in a lot of ways, but it's actually the best place for us to be right now b/c the district is so big, it has a lot of options.  A smaller district might not have the appropriate stuff for him.  So I'm cautiously optimistic.
 
So as we begin this process, and April 9th approaches it feels like we're about to leave this little pond of our Early Intervention Program and get whooshed into the big, vast, ocean of the Oakland Unified School District. 

It could be great, but it also might be really easy to get lost out there...

Home

 

Our week in Pictures.

Beach combing in Gualala

 Simon meets Sea Flora

 A boy on the beach

 Jaime and Mamaw are ready for the Pole expedition

 Mellow Mama and Simon

Little did we know that the mellow would turn to lethargy and the lethargy to feverish and the feverish to Pneumonia

Trying to keep cool and keep the O2 cannula in

Our first wagon ride complete with oxygen tank

He can still find the smile

Day of departure- Simon's making plans for a big NYE

(Please note the size of the bed- Jaime and Simon spooned in it together)

Heading out

I have conquered pneumonia! I am the master of my domain- HOME!!!!

I am sure that there will be a blog sooner rather than later about the whole adventure/ nightmare but right now it's 9pm and both Jaime and I are completely tapped.
Happy New Year to all and humongous thanks to all that called, texted, brought over food, ordered us food, sent love, light, prayers, healing thoughts and WTFs. All were welcome and central to our getting back home safe and sound.

and to all a good night.