Big Changes at Chez Fitch-Jenett Part Deux

What Jaime said...And, over here in the internal world of the Fitch, it so much more complicated and likely why I have not written yet on this monumental marker that is coming up.

Simon is turning 3.
If you want to check out what happened last year, go here ( Beginning )
It's not an easy time for me. To have it coincide with so many other beginnings and endings, well, I feel down right exhausted.

The IEP was not an easy process in and of itself. Full of contradictions. It was so great and heartening (hah) to watch Simon be totally himself during each and every assessment. He did such a perfect job of showing folks what he could and couldn't do...all with his own particular brand of enjoyment.

And good on them (all of them!!) for listening to me tell them what they might not see during their one or two hours of 'assessing' my child.

There it was, all of it, right there in black and white in their reports. How lovable and personable and resilient and well-cared for, and steady and secure this little boy is. How amazing it is that he can count to ten in three languages AND what a large vocabulary he has! And, oh yes, how he is delayed here and delayed there and delayed most everywhere.

{Most amusing is where he lands on the self-care/eating scale- 1 month old. What one month old gnaws on a BBQ rib bone with spicy BBQ sauce remnants or asks for Thai green curry by name not to mention licks copious amounts of straight up cumin and paprika right out of the spice jar?}

Delayed and very medically fragile.

It was so hard to read all of the ways in which the school nurse (bless her heart- hah) made sure that Cardiomyopathy was laid out for every person that would read the IEP; how serious it is, how it can result in hospitalization or worse, the symptoms, the invisibility of it for some kids, the weakened immune system, blah blah blah....all of it right there on paper laid out neatly in organized paragraphs with links here and a statistic there. And thank goodness she heard me when I said that it's one thing to look at Simon, listen to him talk, feel his arms around you, see the light in his eyes, the joy in his smile, and believe that he does in fact live with this very serious, sometimes fatal, always medicated, up and down, not very well understood, stooooooopid fucking disease. She got it.

Sitting around that table listening to all the assessors and administrators give their reports, it was a true blessing (that I know from experience not every family gets) to feel like every single person at the table got a very complete picture of Simon.

Where he needs support, for sure. His strengths, yup, got 'em. But, they also seem to get something else. The mind bending, paradoxical, deep teacher that Simon can be, in how he lives with contradiction.

And so looking at what he was offered, what he will receive, what we will continue to push for (Part 1), I feel that we are so on track it couldn't have gone much better if I got to puppet master the whole thing myself.

Still, taking him to all those assessments, seeing so many of things that he can't do (over and over), filling out those awful developmental questionnaires, explaining over and over again that how he looks and acts belies the serious (and uncertain/unpredictable) nature of Cardiomyopathy, I began to  simply take in the fact of what this transition means. I will no longer be with him.

I won't be with him.

I know it's only for 2.5 hours a day (4 days a week) plus or minus some time when he starts taking the bus (which he has already expressed interest in). Still, that's more time than we've ever had apart before.  Who will help him up when he falls down? Who will notice when someone has taken something from him? Who will notice when he's taken something from someone else and teach him about sharing? Who will notice if he's playing by himself?

And then the parenting 'plus' moments. Who will notice when he's nauseated and needs to be reminded to breathe through it? Who will notice if he's sweating and or breathing hard? Who will help him when he gags or throws up? Who will be there?

I know all the answers and I even think I have a sense of what's rational thought versus irrational. I know there's risk involved and I know that this is what's right for him. I also know that it's more than likely that he will handle this transition so gracefully.  It still doesn't change the fact that I have been with Simon for 3 years. I have been his Mommy, caretaker, nurse, advocate, teacher, Speech, OT, PT, Feeding therapist, and playmate for three years. THREE YEARS.

Yes, other people have been there for sure. Jaime of course, Dianne, Aunties, Reagan (babysitter extraordinaire) AND that's not the same as being the constant Monday through Friday, every appointment, every Parent Infant Program, every wake-up, every nap, every med, every tube feed, every laugh, every change of clothes, every every.

I'm going to miss him. My life is going to change so much.

And not.

The reality is that I will likely only have one and half hours to myself. Between the drop off and pick up and the minutes of transition in between, it's barely enough time to come home, grab Roxie, and make my way around Lake Merritt at a run-walk (get your body back) pace.

Another contradiction.

I'm having a really hard time holding the truth of what's coming because the truth is I have no frikkin' idea AND I have to say I'm not that great with change to begin with so...what's happening?

Let's recount.

Simon is going to school.
Simon will be cared for by people other than me.
I won't be there.
He will get all the services that he needs.
I won't be there to see what they're doing.
It's 2.5 hours every day (except Wednesday when we have Feeding Therapy in San Francisco).
I will have 1.5 hours, 4 days a week, after drop off and drive home, minus time needed for pick up.
Simon is going to school.
He will wear a pack back that contains his pump, tubing, and blenderized food in it.
Simon will wear a back pack! (too cute visualization there).
I will miss him.
We will still have 6.75 hours a day together after school.
Simon will have fewer appointments throughout the week. (Unclear how many but we're working that out with OT and PT through our insurance).
I will miss him.
I will try and spend 1.5 hours a day doing something that is good for me.
On April 7th, Simon will graduate from PIP.
On April 9th, he will turn 3
On April 11th, he will start his new school.

I can't quite hang with all this change. I feel like my world is looking a little like some of the dreamscapes from the movie Inception where entire city blocks curve up and over like a tidal wave or the center of gravity keeps changing and alternating depending on the people or four walls around me.

That, and the endings. We have one more session with Cece, our beloved speech therapist (Simon had less than ten words when we started- just last June!!!), four more sessions at PIP, four more parent support groups for me, maybe one more home visit from Marybeth.....all these people that feel like they've been in our lives for so long! I hope that some of those relationships continue, I know some will and some won't.

I literally just took a deep breath and tugged the short hairs on either side of my head without realizing it until I heard Reagan laugh at me.


Change is hard. Big Change is harder.
Letting go. Riding the wave.
Pulling hair (not out. More like in a massage sort of way) apparently helps.

I'm sure there's more to come.

..................
Jaime and I got 20 minutes to connect tonight before dinner and bath time, etc. We talked about both feeling this deep sadness, grief even. Simon is about to go out into the world in a whole new way and it is without us.  He will make friends, have new adults in his life that will offer support, learning, comfort, and love. It's not I like think he's going to replace us as his primary people but more that we are having to share him.
For sure it will be a splendid thing that we unleash unto the world. I mean c'mon, the world at large could certainly use and only benefit from a little more Shimmy La in it. But I guess there is this little wonder in my head "there's enough to go around right?"

All signs point to yes. He is love straight up.

On that note I have to share simple deets from our cardiology visit today.

No change in function from a month ago (not surprising!) but there was a change in the nature of the visit (the last three having being pretty rough in terms of how the Shimster handled his ECHOs and dr's visits.)
Dude was a dream. No fussing, no squirming AND amazing hugs and thank you's to all of his peeps. The ECHO tech, the one from last time, the admin woman, the EKG tech, HunkyPants (who got a resounding 'Rosenfeld!!' when he passed by the door the first time), and the resident who did his blood pressure!
Little man was straight up love today. If he can do that at a Dr's appointment then I am not worried (99%- ok?) that he has more than enough love to go around.

Last image:
Last night Simon was newly stripped down for a pre-bedtime bath. I made some benign comment about his bottom. Probably something along the lines of "what a delicious tushy you have!"
His reply "Tusheeeeee. Hug it...............Love it"


Hug it


Love it.

 

Big Changes at Chez Fitch-Jenett

 

We had Simon's Individualized Education Plan (IEP) meeting with *8* reps from the school district and Simon's current Early Intervention Program last week to review what folks found in their assessments of him, what they thought he would need to address the findings and what the district would provide. It was a fantastic meeting- sort of the model for how an IEP should go- and it was hard. We (my Mom, Laura and I) sat for 2+ hours listening to these smart, observant, caring people articulate all the ways Simon is delayed and all the creative and brilliant ways he compensates. It's intense to have your child "scanned" as thoroughly as he was.

He had the following assessments:

•  Status 2 (to check for mental retardation and autism)
•  Occupational Therapy
•  Physical Therapy
•  Speech
•  Psychological

The findings varied, but the bottom line is that in some areas Simon is only about a year delayed and in other areas, he's at the level of a *15* month old. Uniformly, every assessment commented on what a sweet, happy child he is. It was almost comical to see almost the same words over and over in each assessment. And quite lovely.

 Here is what the district has offered:

•  a special day class (yea!!!) with 6 children, a teacher and 2 aides (yes, that's a 2:1 adult to child ratio!) Monday - Friday for 2 1/2 hours
•  extra Occupational Therapy once a week
•  extra Speech Therapy twice a week (with a male speech therapist- yea testosterone!)
•  Physical therapy consultations as needed
•  a site visit from a district nurse every month to check in to make sure things are still set up for him medically (handwashing protocols being followed, etc).
•  All the adults will get trained on how to do Simon's tube feedings.
•  a bus to school once we think he's ready.

Laura and I are thrilled.
And a little bit terrified.

We are handling these upcoming changes...moderately well.  I think we're both struggling with what it means to hand over our child to other people, even if is only for a few hours a day. It feels like this is the beginning of a much bigger process, of Simon becoming ever increasingly independent.  This is, of course, hard for parents of typical children, but I think particularly hard for parents of kids that are considered medically fragile.

Suffice it to say we're having some big feelings at our house.  We haven't quite figured out how to talk about it yet, so it may be a little bit until we can articulate them here.  In the meantime, we wanted folks to have the nitty-gritty since we had the IEP. 

We're going to visit the school on Wed to make sure we think it's appropriate for him and then, assuming we give the green light, he'll start April 11th!

The IEP Commeth and/or A Change Gonna Come

Tomorrow is the IEP (Individualized Education Plan) meeting for Simon.
This will change everything.

Longer blog to come.

Today, enjoy a video & pics from Simon's first therapeutic riding session.

I'm Ready!!!!

Vroom Vroom!

Catching bean bags

Giving Sweet Pea some love

Just look at his face

Standing up in the saddle (doing that while moving is next!)

Standing up on his own!!

Putting the brass (or blue) ring on

30 minutes into it and still raring to go

Sweet Pea gets some treats after a lesson well done!

Neon Spandex

 

Nobody (except maybe morticians) likes talking about death. Certainly no one in their right mind likes thinking about children dying. Laura and I are no exception.

But sometimes we have to.

And we know that bringing it up makes people, probably even you, uncomfortable. Please hear me out as I explain why we have this most depressing "habit"...

From the outside, it may seem like we spend an inordinate amount of time talking about the threat of death from Cardiomyopathy. It might look like we're just wallowing in gloom and doom instead of looking on the bright side. This can be especially confusing when Simon seems to be doing great and we're still talking about death.

There is a reason for this.

Laura and I are two of the most optimistic people I know. The dictionary defines Optimism as " hopefulness and confidence about the future or successful outcome of something; a tendency to take a favourable or hopeful view". I'd say this definitely describes us.

We are also, what I would call, Down-to-Earth, which the dictionary defines as "practical and realistic".

Living with Cardiomyopathy means that our optimism must be tempered with what is practical and realistic, in order to maintain sanity.

We recently got more information from the Pediatric Cardiomyopathy expert, Dr. Towbin. A few months ago he reviewed Simon's echos and diagnosed him with something called Left Ventricular Non-Compaction, which is basically a more refined description of the anatomy that is leading to the poor heart function. Laura talked to him a week or so ago and was able to ask him specific questions and get more information. Dr. Towbin explained that kids with LVNC, more than other types of Cardiomyopathy, have a tendency to "go up and down" with their function. It's great that he's doing so well right now, he said, but that we can never let our guard down. And no one should ever try to wean him from his meds. He mostly echoed how we're approaching this disease (enjoying the good time right now but knowing things could get hard again) and suggested a few more tests we may want to consider.

It was both comforting and sobering to have our gut feelings about how this might look for the rest of our lives confirmed by the world expert. We've heard of kids that were deemed to have their cardiomyopathy"resolved",  told they had normal function, were taken off all their meds and then tanked abruptly and either died or needed heart transplants. I now wonder if those kids had undiagnosed LVNC.

When we mention this possibility to people I often get the distinct sense that they're thinking, "Okay Debbie Downer! Why don't you just look on the bright side and enjoy that he's so much better?".  This is particular true for people who have said, "How great that Simon is so much better!  I bet you're relieved" and gotten our somewhat depressing explanation above as a response. I understand that they're trying to be helpful and positive. We don't want to make people feel bad. AND, it feels important to convey that we're still living with this disease, it will never be over and it's not that we're just killjoy pessimists. We are enjoying this time of improved heart function and hope it will last forever, but we don't ever want to be that family, knocked on our asses by that sleeper wave again.

When I think about what Dr. Towbin told us, I combine my "optimism" with my "down-to-earthness" to crystalize into this:
I hope for the best quality of life possible, as few "lows" as possible, and that Simon does not die an early death from this disease.

I can not hope for a day that Simon is not on medications or a day that I can feel relieved that we are out of the woods. That day will not come. It's not a realistic goal and to pine for something I will never have is a recipe for madness, not happiness.

We are part of a listserv through the Children's Cardiomyopathy Foundation for parents of kids who have this disease.  There are a couple hundred families on it. We email each other constantly, checking in about how our kids are doing, asking questions about medication side effects, or funny symptoms or suggestions for how to ask our doctors hard questions. We share good news and hard news. We know each other. We are a community.

Every year a handful of children from this group pass away but Friday night I got news that * three* children from our Cardiomyopathy listerv had died within about 36 hours. This many, this close together is pretty unusual. As you might imagine, it's also pretty disturbing.

Someone close to us was with me when I got the news. She saw that I was upset and observed, gently, that Laura and I seemed to focus a lot on the death and dying part of this disease. I could tell that she was speaking to me as someone who loves us and doesn't want to see us suffer and wasn't trying to shut me down. But I still had to resist the urge to throw something at her.

I struggled to explain that when we talk about that grim aspect of Cardiomyopathy, we aren't trying to be dramatic, we aren't trying to shock people, we aren't trying to get sympathy. It's the threat we live with pretty much on a day-to-day basis. She posited that we all live with the threat of death every day, that any of us could be hit by a bus.  I inferred that she meant that we can't live productive lives worrying about death all the time, which I actually agree with. 

But...this is different.

As one parent on our listserv said, "yes, any of us could get hit by a car, but with Cardiomyopathy it's like we live in houses with a front door that opens onto a freeway". I'm not worried about Simon dropping dead out of the blue.  I'm worried about the delicate balance we've managed to gain over the last few years being tipped in an instant by something minor: a cold, a fever, something mildly concerning. It doesn't take much with our kids to knock things off kilter and we can suddenly lose all the ground we gained. I'm afraid of our lives being ripped asunder once again without warning, of the bug that will knock out all his reserves and leave us fighting a long, hard, awful, painful fight back in the ICU with the spector of death looming over us. 

Here's the analogy I came up with:

I said, "It's like we're gay men living in the 80's".

She stared at me blankly.

I realized she might be confused since we didn't have any neon spandex or cocaine in the house so it definitely wasn't the 80's and we have a severe shortage of testosterone or handlebar mustaches at Casa Fitch-Jenett.

"What I mean to say", I continued, "is that we live in a community that is staring death in the face every day, much like gay men in the 80's facing the AIDS crisis. The children of our friends on the Listserv are dying from this disease. This is not something that "could" happen or is happening to people "out there". It's happening to people we know, in our circle. And we have the same disease. It's likely that it could happen to us".

We live with this disease every single day right in front of us, worry about germs 10x a day, listen for a new cough every night, check for a sweaty forehead during naps, communicate daily with other parents who are also living with this disease, have relationships with parents whose kids are dying, pray for kids we *know* who are hanging on by a fingernail. There's something about warding off evil day-in, day-out that makes it feel a little different, a little closer than it is even for people who are so tightly in our lives.


It's so important for us to have people like this who can hold a focus point outside the storm, who can remind us that there are chirping birds and sunny skies out there. AND, it's also important that we keep a firm grip on a harsh reality so that we aren't caught off guard and spun off into the skies.

So sometimes we're going to focus on the hard stuff.  And we need to. It's our reality. It may not be pretty, but it's what we got. Thank you for bearing with us when we do. And if you struggle with this and try to tell us not to worry about Simon when we think we need to, we have a new code phrase that we will utter with love.

"Neon spandex".

Kinda catchy, right?

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?