My Heart Hurts

Not Simon's.

Mine.

We had our 18 month PT evaluation today. I really like and respect the therapist that came. She was the same one from last spring and for the most part has a great way of explaining and communicating what's going on.

So here it is. There is nothing obviously wrong with his working parts but for some reason he is not walking. He has no tremors, no consistent 'toe walking', he has great muscle tone and good balance. And he has made about one months progress developmentally in the last 6 months.
"He seems stuck."
"He should be a toddler by now."

I felt so stupid. I heard that "should" and it went straight to my heart.
It landed on top of all the other "shoulds" that are piled there that I work so hard (and well) not to give credence to. And each time a new one arrives and lands on the top of the pile, all the ones below it stick out their little legs with their combat boots on and start the sharp kicking to my heart.
"Simon should be walking."
"Simon should be eating."
"Simon should be talking."
"Simon should at least be saying Mama."
"Simon should be spending more time around other kids."
"Simon should be able to take a trip to visit his New York family and see where his Mommy grew up."
"Simon should be able to go to daycare."

Simon should have had months 4-8 of his life free of ventilators, blood draws, PIC lines, spinal taps, central line placements, life threatening bacterial infections, talk of heart transplants, cardiac sweats, Echo cardiograms, and vomiting.
I could go on but then I would just be 'should'ing all over myself.

So once again, a certain reality just doesn't jibe with another. How to reconcile the reality of the sweet, super happy boy that spends most of his days enjoying, exploring, and delighting in his world, with the other reality of my sweet fragile Simon that cannot afford to get sick lest it send him back to the hospital and IV medications, who cannot speak certain sounds at all (no back of the throat G or K sounds yet), who has yet to master three let alone the twenty words that he's supposed to be using, who cannot walk yet, and who fights eating with great stubborn refusal and discomfort/fear.

They are both Simon Lev Fitch-Jenett and I love them both. I get to spend most of my time with the former, although the latter is always present, just sometimes emerging from shadow.

Both can melt my heart in my chest. One more often with laughter and delight and the other mostly with dead weights like the ones I used to use scuba diving...their only purpose is to make you feel heavy and keep you down.

So there is nothing wrong with Simon. It's likely that if we held off with PT, "at some point he'll walk." And she'd like to see that happen sooner rather than later. Up until Friday when Simon turns 18 months old, we are still on the chart for 'normal' walking time. After 18 months he is officially delayed. Maybe he'll start walking by Friday. And, maybe we'll need to start the process of getting a referral from our pediatrician and getting on waiting lists and starting PT and paying extra co-pays and having additional appointments and blah blah blah.

I'm not feeling as sorry for myself as it sounds. She did say over and over again "he's great, he's doing great, he's looking great, you all seem to be such a great family." It's true and I know it.

I also know that Simon works best when he's on his own timeline with gentle nudges in the right direction.

I also know that my heart hurts and I'm grieving for all those "shoulds" that we just don't get right now.

I also know that Simon Lev Fitch-Jenett is one of the happiest, most engaged, loves checking out his world, little dudes that I ever met.

Simon Eats and Walks!!

In his own special way.

Check out the video http://www.youtube.com/watch?v=WyuCwqxDHM8

and

he may not eat food but he sure loves to munch on his foam pillow
and

make like the chic from the Exorcist
Sorry to be a tease with the title of the post but I just had to report that we've had a couple of days with Simon acting like a 'new man'. He was a little Juggernaut last night 'running' with assistance between Jaime and I at a lovely dinner with our friends Justyn, Kim and Amira (and then staying up till 10pm just for fun). Then this morning he had a ball playing with some really delicious Pea soup at Brunch with G'pa Bruce and Grandma Nola. I think some even made it into his mouth!

A lovely weekend all around.

It was a great start to what promises to be a full month of October. We have a PT eval tomorrow, GI appointment later in the week, camping in Yosemite (little nervous about that), a Cardiology workup, and visits to the pediatrician to start our flu season regiment. Whew!

But this is where we're starting from so right now it's all feeling good.

Unbelieveable allies

I know we have great friends. I know that our community is made up of very very special folk.

And

I am blown away.

So, Jaime had put it out there on Facebook that she had just filed official adoption papers for Simon and had commented on how asinine, let me repeat, ASININE, it is that she has to pay $700 dollars and go through a home visit and court appearance to adopt her own child. I can't even begin to say how offended I am by the process that even though Jaime and I were domestic partners long before we had Simon (married even in the state of CA) we still have to have a social worker come to our home, check us out, requiring four character references, and $700 dollars (and that's only because we are doing it ourselves and not hiring a lawyer saving us hours of busy work and thousands of dollars) to have the rest of the country recognize Jaime as Simon's mother.

That's right. If we left the state and (poo poo) something happened to me and/or Simon and I at the same time, Jaime might not be allowed to see us in the hospital, make decisions and/or automatically be given Simon to care for. Not to mention if (poo poo) something happened to Jaime Simon would not be eligible for Jaime's Social Security benefits because she is not seen as his mother on a federal level.
But enough about that....

So Jaime has put it out on facebook so folks could be happy for us in her finally becoming a true "parent" to Simon (please read that with extreme sarcasm). About a week later a letter comes to us in the mail from our good friends Daniel and Katie (dear friends from Jaime's stint in North Carolina at Grad School). They are not lottery winners. They are not independently wealthy. They are in fact both students (PhD and MD respectively) AND have a new baby themselves. Not rolling in it.

In the envelope is a beautiful picture of themselves (Eli the kid is quite a looker), a lovely card with pears on it, and......a check for $100 that we are required to put towards Simon's adoption fees. They "will not take it back" and if we are too proud (which we are not) to cash it for Simon's fees we should please donate it to a worthy marriage equality organization.

I was rendered speechless with a heart that threatened to burst with love and pride in our amazing friends and their very very powerful ally action. Who does that sort of thing...so personal, so political, so out of the blue, so loving, so righteous (in the literal and 70's slang sense of the word)?

Our friends do that. That's who.
It felt incredible. We are soooooo blessed.

Oh yeah, and we have our home visit this coming Wednesday. Any one want to dog-sit our psycho pooch? Jaime may be a perfectly acceptable 2nd parent. I don't think Roxie would make that good of an impression.


Love to all.

LF

Shout Out to The Mommy In The House

We were with friends who have a baby and one of them was talking about how hard it is to work and run a household and have a baby- there's always clean laundry piled up and the house is always a mess and there's always a scramble for emergency childcare when the nanny is sick, and someone has to take the pet to the vet, etc etc. Makes my shoulders tense just thinking about the juggling act.

And then I realized that, while my life is really stressful for a lot of reasons, worrying about the household level of detail doesn't exist for me because Laura has made the sacrifice to be home. We don't have to wrangle and scramble and finagle because Laura has essentially put her life on hold to be there for Simon, but has also picked up so many extra things along with that. She takes the dog out most of the time, takes the dog to the vet, takes Simon to medical appointments, does laundry, does dishes, grocery shopping, mailing things that need to get mailed, loads runs and unloads the dishwasher, etc, etc, etc.

It's all the little papercuts that add up to "death by a thousand paper cuts" that I don't have on top of everything else. I don't have to worry about all those things because Laura does them. On top of keeping our baby alive, giving him his meds, his feeds, wiping his tears at the doctors, keeping him stimulated, worrying about his barfing, etc, she does all the household things so that we can keep going. And doesn't get paid for it. And is alone a lot of the time.
I forget sometimes, all the things she does, all the things she is, all the ways she loves and supports our family. So this is my reminder.

She doesn't just do the little stuff around the house. She manages all our money. She has the hard conversations with people when I'm too scared to sometimes. She gets me treats when she's out for herself. She listens to me at night when she's really tired and I just want to talk and talk and talk with her. She loves me even when I'm grumpy and frustrated with clutter and flinging toys about in the middle of a temper tantrum about all our "things" everywhere. She lets me put Simon down to sleep even when I know it physically hurts her to hear him cry and wants to do it herself. But she lets me do it because she knows it's important. She calls me at work just to talk to me. Because she loves me. She manages to do all the stuff I already listed, love our baby, love our dog AND love me. Sometimes I can't believe how incredibly lucky I am.

Oh, and she made and carried Simon. And pushed him out. Of her body. For us. So we could have a child.

I told her tonight, "I can't imagine marrying anyone else in the whole world who would fit quite as well as you do". And I can't. She's perfect, in that way that perfect can exist in real life.

'earing Update

So the news is Simon is not deaf.

Looks like there is really good responsiveness in terms of his ear drum working and cochlea responding but there were some funny dips below 'normal' on the main test.

Meaning...nothing conclusive and we have to come back in 3-6 months when he's less likely to be squirmy for the sensitive in the ear test and more likely to be reliable in the test for older kids.

I know I should be relieved AND to be back in that inconclusive place with more tests to come make me just a little nuts.

We've certainly 'set up house' here before. Just waiting and letting the little man be on his own timeline. Jaime and I know this drill. I know this drill. I live this drill on a minute to minute basis with his heart, his eating, his walking, his talking. Like any baby/toddler he is on his own schedule. I feel like there's just a little more at stake with Simon. (I know there's everything 'at stake' for every child, we just know up front where the little man is coming from)

Am I thrilled that Simon does not seem to have significant hearing loss? Yes!!!

Did I want to leap for joy every time he turned his little head toward the sound coming from the speaker to his right or left? Yes!!!

Did I want to strangle the hearing specialist when she kept saying "well, he's not deaf." YES!!!

For sure there was a part of me that just wished for something definitive. Absolutely not the "Simon has significant hearing loss". Absolutely not. He has a brilliant opera career ahead of him (right now as a Soprano which means he could do duets with his PopPop Bernie).

But something definitive meant there was something to do other than wait. Waiting is hard. Waiting for more tests, waiting for his heart function to improve, waiting for his immune system to get stronger, waiting for more words so that we can really begin to understand what his days are like, waiting for him to take food in by mouth (for obvious reasons coming from two foodies like his mommies), waiting for him to start walking, and now waiting for more months to see if there is in fact hearing loss.

Something definitive meant something to do. Either, check it off and realize that Simon is just a willful little rascal that has no interest in low flying planes or that there's damage that wouldn't be reasonably unexpected given the medications that he got during his two bacterial infections in the hospital. And then what comes after....relax or figure out a plan for him to live and thrive. I do that. I can do that. I can do either the former or the latter really well actually.

Instead we wait. We go swimming. We celebrate little/big things (like first steps), and we love him up as best we can. The last one we can do so well and so easily. Let us not forget who we're talking about here.

"Uhhh, you better not. I am FABULOUS!!"

"I have my hair done regularly so I can keep looking good...for you"

"Plus I am always looking for the newest headwear in the fashion world. Just to be FABULOUS for you and make you love me!"

And it is easy.

One small step for mankind...

Or at least one baby!

Simon took his first step today. Completely on his own.

He was standing at the Coffee table in our living room and I was sitting next to him just far enough away that he couldn't reach me without letting go. I didn't realize at the time so I almost missed it but then it happened. There he was with one hand on the coffee table and the other one reaching for my shoulder when...he let go...both hands in the air....and he took a step!

I think I scared the crap out of him by yelling and telling Jaime (who was in the other room) "Some one just took their FIRST STEP!!" But there I was for just a moment (a sweet moment for sure) feeling like a regular parent thrilled over her child's first step.

Then he barfed on me (not related to the walking) and the moment was gone. Not gone completely since about an hour later he walked pushing a stroller for longer than I'd ever seen.

Today I feel like I'm having parallel moments run alongside each other. We have our hearing evaluation tomorrow and are waiting to hear back from the LEAP Program (an early intervention play group time that we may qualify for) and at the same time feeling the thrill of Simon finding his feet and clearly heading towards walking.

He's such a trickster. Since birth, he's brought Jaime and I just to the edge, and then offers some kind of reprieve and/or magnificent gift. Like sleeping five hours in a row just when we thought we might lose our minds from sleep deprivation, etc etc..

So just before turning 18 months, which is the later end of the 'normal range' for walking, Simon seems to be 'off and running'.

He is on his own timeline. I just need to keep remembering that. Simon.....in his own time.

Trickster/ Teacher it's all the same it seems.

Simon is not your typical baby. No baby is typical I know, but Simon has brought some very special times along with him into this life. He's certainly taught those around him to savour each moment and whether it's as a-typical as getting off a ventilator OR as typical as watching him take his first unassisted step, I celebrate this little life.

I celebrate you Simon Lev.

Celebrate Good Times C'mon!!

Training with G'Pa??

Update

I don't even know where to start.

Simon is getting his hearing checked on Tuesday to rule out what seems like likely hearing loss.
Could have been since birth (it was never checked) and/or may be a result of some of the hardcore anti-biotics he was given during his two infections in the hospital.

It would explain some of his delay in talking and responding to specific sounds.

Really?!!

C'mon.

Still on the track...just waaaay back

Simon had his 6 month check up with the Regional Center yesterday. That's the organization that's been providing us with Feeding Therapy. We were checking in on that but also doing a general evaluation to see where Simon was at developmentally in all the other areas. Both Jaime and I had been preparing ourselves for what seemed obvious (especially obvious when we are with other children). Simon is delayed. We know that.

We just had it confirmed in an official way and it sucks.

This evaluation was a general one that comes from asking questions from a form but it looks at the larger areas of development to assess whether further more specialized evaluation is needed. We looked at Gross Motor, Fine Motor, Problem Solving, Eating, and Social Skills. On at least three (Eating, Problem Solving, and Gross Motor) Simon is delayed and on two of those (eating and Problem Solving) he pretty much scored a Zero.

********************

It's been a week and I'm sorry I haven't written but suffice to say that the above put me in a funk for a few days. I just wonder if it's more of a timeline thing with Simon and he's just moving at his own pace, moving being the key word.

Or, are we dealing with some deficiencies that are less about Simon just getting 'there' a little slower and more about not getting there at all.

More to come in that regard.

As for the rest of the week and into the New Year (Rosh Hashanah was last weekend) we are looking forward to much sweetness this year and hoping to continue on our no-major-drama path. We continue on with swimming, playing in sand, scooting, cruising, and making new monkey sounds.

It's a hard road for sure with some incredible vistas, gentle ups, downs, and a pretty long stretch of level trail right now.

October brings our Cardiology visit after two months of CoQ 10 and Homeopathy. I will not get my hopes up for big change.

Maybe just a little.

Some recent pics for you to enjoy

Mama and Nanook of the North

"I love you for sleeping"

"I'm going to be a blues man for sure. Lord knows I have some blues to sing about"

Chooo Chooooooo

Laura and I just had a chat after a very full day and I came up with yet another analogy about what it's like to parent a kid with a life-threatening illness.

A friend and I threw a baby shower for another friend who is due in late October. It was very fun for me AND it was also very hard for Laura to have me spending so much time cooking, going early to prep at the location, etc. Laura was clearly very sad and having a hard time at the beginning and I knew it wasn't just that we'd been grinding gears but I wasn't sure what was up. Tonight she explained that she was struggling with her memories of us at *our* incredibly joyful baby shower. We were so full of hope and joy and expectations. She said, "If I could tell those expectant parents (us) what I know now...I would have told them to just get rid of those ideas and hopes and dreams they have about a typical new parent experience". Looking back it's part cynicism and part sadness for those parents (us).

At the party, a woman with a 9-week old baby was talking to my expectant friends about how babies are so incredible because they are just pure emotion- they look at you so completely joyful and then the next moment are screaming their heads off. It was the "looking at you with such joy and contentment" comment that got me.

I felt such a deep, deep pang of sadness that I almost teared up. My memories of Simon's first 4 months are of a very grumpy, irritated, rarely content little baby that never stayed happy for very long. I don't have memories of him looking at us contentedly, peaceful and snuggled up happy and awake. I remember him as either asleep or just not very happy. We, of course, now know that he was probably very uncomfortable most of the time due to his undiagnosed heart failure and that makes me so sad. We didn't get to have the progression from grumpy newborn to gradually happier and happier baby in the same way other people did. Ours stayed grumpy longer and then KA-BAM we got derailed.

Here's the analogy: It's like we are now on another train from all our friends and most other parents. We might be riding right next to them, on two separate tracks, waving and smiling and chatting through our window, but we have a different journey. Our car goes through really scary dark tunnels with sharp, unexpected drops. We have bumps and screeches and rocking that our friends don't have. And the poor souls that might actually be riding in the same car with us terrify me.

I almost can't handle the idea of getting close to parents with other kids who have life threatening illnesses because their tragedies feel like too much when we're just holding on by our fingernails. Sometimes I can't stand to read the listserv of other parents with kids like Simon because it feels like if they go off the rails, our car might be the next one to fall off the tracks with them. It's all so precarious.

I was just really feeling the loss of the relatively carefree mindset I had setting out on this journey. It's not just worrying about funny poops or sniffles. It's rat poison and feeding pumps. I don't wonder if Simon is going to learn things as fast as his peers. I wonder if he's going to learn things at all. It was such a mix to be so excited for our friends and at the same time try not to hold my breath, cross my fingers and pray with everything I have, that they will never, ever know the pain and sadness and loss that we feel as parents of a baby with special needs.

Laura says plainly, "I'm jealous". Our friends will more than likely get to have that typical new parent experience that we will never get to have. And we will never get that back. Even if we ever had another kid, which is highly unlikely, we are forever changed. I've lost my innocence around what it means to be a parent. I will never parent without worry. I can try every day to keep it manageable but I also know it's that little bit of extra worry that makes us vigilant enough to do what is needed to keep Simon stable.

Sometimes I feel really sad for what we lost and are still losing. And lonely. We can be part of the party going on in the train on the track next to us, but at any moment we might end up getting derailed again or lose steam and slow down and then we're all by ourselves again, watching while everyone passes us by.

W.A.S.P.'s and Latkes

Jaime and I are special. We come from opposite sides of the country, with two very different families, (that get along swimmingly) with two very distinct growing up stories. Food, schooling, family time, recreation, religion/ spirituality, earthly goods, communication etc, etc.....verrrrry different. With all that going on, we still met and decided to partner with each other for the rest of our lives, not to mention embark on raising a child. Plus, we like each other a whole hell of a lot.

Here we are, just starting out on that crazy ride called parenting, when *whamo*! We have a kidlett that is quite special and brings with him into this life a whole host of needs that are not typical of the madness that is first time parenting to begin with.

For the last week or so Jaime and I have been bumping up against each other in this thing called parenting. I would say that normally we turn like cogs intertwined. Maybe cog is not the right word but I'm talking about the big wheels in clocks that have all the grooves and rotate, making the clock tell it's time...got the image?

Actually I would say that for the last week or so we haven't been "bumping" against each other so much as we've been rubbing irritatingly and/or feeling miles apart. Not so easy and/or comfortable when there's always so much at stake each moment of each day. Also, not so much fun when the underlying feeling is that you love the other person so much and miss them terribly even when you don't want to be around them.

.....Still with me?

So it had gone on long enough and we set aside our regular vegging out (Top Chef and Project Runway are back on- blessed be) to have some reconnection time. It's a conversation that we've had numerous times in the last 16+ months. How different our lives our as a couple, how different my life is from hers, how normal her life feels at times, how my life doesn't resemble any kind of normal that I've ever known....and on and on.

We were talking about how different our coping skills are given our backgrounds.

Jaime said something like "You know it's kind of like when someone dies. As a W.A.S.P. you put on a brave face, have a funeral and then get on with life sort of like it didn't happen."

To which I countered with "We tear our clothes and shut down for 7 days."

She said "We smile and cross our fingers that it doesn't come up in conversation because we might cry in public, which one really shouldn't do because it might make people uncomfortable."

I said "we cover the mirrors in our house, make sure to wear black so everyone knows and say the Mourner's Kaddish (prayer) for a year."

We went on with a few more examples. So much fun.

This was actually the breakthrough moment of our conversation and made us both smile and laugh.

Jaime and I will continue to bump up against each other, cogs screeching and scraping, but more often than not nicely in sync. We are both in love with our son Simon. We are in love with each other. Neither one is in question, both are absolute.

And Holy Heck, both are magnificently hard sometimes and in such different ways. Parenting is hard. Parenting Simon is hard. It's not the loving him part that's hard- that's easy. Even when he hasn't napped in days (napped yesterday!!!) or when I'm holding him down for a blood draw, scheduling his appts, cleaning up vomit etc, etc, my heart is still so full of love for him. Sometimes it's that heavy thick-with-sorrow kind of love but mostly it's the juicy-like-a-Jolly-Rancher-candy kind of love.

Loving Jaime has also been so easy. Even when we are scraping along I am so aware of how much I miss the sweetness and want to get back to it. It means that I always carry an apology in my pocket. I might forget which pocket it's in right away or it might be the "I'm really sorry that was hard for you" kind of apology, but it's there.

I think Jaime and I genuinely do feel bad when the other person is having a hard time even when their hard time might be facilitating ours as well. The magic trick we are working on is letting the other person have their hard time, being there for them, and remembering that how it gets played out is not necessarily about us, even though it's coming our way.

Simon requires a whole lot from us, emotionally, physically, financially, spiritually,

you-name-it-lly and that includes Jaime and I loving each other and working together as best we can. He deserves it. I deserve it. Jaime deserves it.

Mayo and Matzah.

WASP's and Latkes

Christmas Trees and Maimonides.

It's all good

and hard

and my family.

Like Justin says "I'm lovin' it."

Here are some pics of the growing boy

I got new shades!!

I like em'!!!!

I look gooood!

Story time with Julian (1 month apart but look at those different sized heads!)

Simon's new favorite pastime- Zerberting Mommy

Terrible Horrible No Good Very Bad Day(s)

Having a sinus infection does not help.


It's been one of those days (actually we're on day three of one of those days).


Simon has not napped in three days (with a nap on Sunday but then not for three days before that either). I have no idea what's going on for him but it's making me a little nuts that I get no real break during the day (save for the Pious One Abby Pike who can sometimes take Simon and run away from the 'about to lose her shit' Mommy monster). Add on to it a very pukey baby today, morning plans foiled, clothes changes three times before noon, one extra shower (that immediately went to waste) one Dr's visit for Laura, and the ever annoying/sometimes painful sinus infection and we've had a terrible no good very very very bad day. Oh yeah, and Simon has Cardiomyopathy so even when someone wants to come and babysit (thank you for the offer Nola) it's not really an option unless they've been trained in the pump and feeding regiment not to mention the medications. That doesn't even include the extra worrying that his barfing brings on. Are we going back to the ER for IV fluids? Are we going back the ER for something more serious? Why isn't he keeping his food down? Teething? Heart? Other system starting to fail?


I had a good cry right after he barfed on me for the third time in 10 minutes and was clearly not going to take a nap today. then we got a call from our caseworker at the regional Center, the place that provides our OT for us (free of charge). Looks like Arnold has cut their budget significantly so we won't be receiving services from them any more since Simon does in fact have insurance. That just means another co-pay for weekly OT plus he's likely to qualify for physical therapy as well as speech therapy. Three more co-pays AND with our new insurance, med costs almost doubled. I hate this. I hate it.


At least there's an air conditioner now running in our home keeping it cool during these hot hot days (thank you G'paw!!) and we're off to swimming with our dear friends Skeeter and little Moses.

It also helped a little that Chocolate Lucky Charms were on sale at the Drug store where we had to pick up my prescription. It's the little things right?


Somethings gotta change soon. We need to get back to a schedule that includes a nap. What 17 month old baby (with a heart condition) doesn't take a frikkin' nap during the day?! I'd like that back please. Oh yeah, and I'd like Simon to eat. That would be really really nice. And walk. If he started walking too that would be awesome. While we're at it why not just make his heart stronger too. That would be super special. How 'bout it?


Right.


Ok then.


I'm out.

Joni Mitchell Had It Right

Feeling very Blue this morning. I capitalize it because it's feeling very much like a place, a state that's just next door to where I live. We're right on the border and sometimes it feels like the fog from over there spreads and covers my house.

I think about Simon and how he's doing and just want so much more for him. Isn't that a parents place though? To always want more for your child? I want the best for him of course. It's just that the 'more' I want right now for him is what most new parents are getting without even thinking of it.

I'm watching him play by himself right now and while he seems as content and engaged as can be, I feel this missing element...the 'other' that Simon gets so little of.

We watch a video of this singing group for little ones (and big ones too for sure) and I see how fascinated he is with the images of so many different babies, toddlers and children. They are singing, and toddling around and he just smiles through the whole thing. It was like that sing-along that we went to at the library.....and can't go back to. I can see him when we're out walking just watching other children. I want more of that for him. I want him to have playmates that he can do parallel play with occasionally learning about sharing and taking turns and having things grabbed out of his hands and doing the same to other kids and then learning from it. He gets so little of that let alone time with other kids in general.

I keep thinking "he could handle it right?" going back and forth between "sure he could, look at him" and "riiiight, it's not how he looks but how his heart is functioning" and then "but he's gotten two colds now and it hasn't affected his heart" to "but what if the next one is more serious and/or the flu". And that last ones helps me remember that it's not worth it and I'm back to where i started, wanting more for Simon. Just wanting it and not being able to make it happen.

I have great gratitude for swimming twice a week and it's not enough....I think...I don't know. Being a new mom is hard enough.

I just feel it this morning. The weight of it all. Eight medications, enteral feedings, OT, a compromised immune system, heart failure, vomiting, sweating, mistakes that aren't life threatening but not healing, colds, ER visits, desperately not wanting to go back to the hospital but knowing that it's always on the table, isolation, managing on one income, and all of those other things that I can't think of right now because we are getting ready to head out the door.

Lots of sighing this morning.

Here are some pics from yesterday's visit to the Zoo with Simon's Vitzvah Carol (aka ICU nurse and special love bunny). See Laura, you do get out.

Um...Mom? Do you think this is a good idea?? Look at her eyes!

Hey this is so much better than a spinal tap!! I like hangin' with Carol now.

Ooooh Monkeys!!

Can I have a Lemur Carol? Can I?

Lemur Shmeemur. Can I have a Giraffe instead?

Switcharoonie

Normally our medical visits are categorized as f0llows:

Cardiology visits- the least fun. They almost always include a blood draw and usually take upwards of two+ hours

Pediatrician visits- mostly fine and even vaccinations and extra flu shots are over fast.

GI visits- No biggie except for the height measuring which Simon does not like (due to the need to be lain down on his back)

So when our cardiology visit this past Tuesday went so smoothly (minus the very short freak-out during his Echo) I was thinking that the rest of the week would be cake.

Not so, not so.

It started with me, Laura, waking up Thursday morning with what hinted at a sore throat. Simon seemed fine. So in our special co-dependent way all seemed fine until we hit the pediatricians office.

Simon was chillin', checking out the fish tank and a nurse that I've never seen before hands me a "development survey". First off it's the wrong month (she handed me the 18month old child survey) and second.....where do I start......

Simon spent 4 months in the ICU. He is amazing and incredible and surviving and thriving despite being in heart failure, vomiting several times a day, having a tube sticking out of his tummy, and taking 6 different medications that each come with a long list of possible side effects. Really, he's rockin' it given all that.

And, it hurts my heart when I'm checking off that fucking list and almost every answer out of a possible 'yes' 'Sometimes' or "not Yet' is a 'Not Yet'.
Not yet
Not yet
Not yet

He's behind in every category. I think I had maybe one or two Yes's out of the whole dang thing. I know it makes sense and really he is a miracle child AND I gotta tell you, it sucks to have it come at you all at once that your child, that most precious little ball of life, that you are working so tirelessly at not just keeping alive but teaching to savor and delight in each moment (as you are trying to do as well), that this child is not quite where he's "supposed to be".

I know that given everything that Simon has been through, he is just where he is. It would be extra ordinary and most unlikely for him to be just like all the other kids his age. And I know that every child is unique and different.

Still, we as a culture have created these 'ranges' and when you fall outside of them, there are a whole host of other things that can come into play. Simon is outside the range. It's often a lonely and hard place to be...for both of us. *Cue rolling tumble weed and a melancholy cowboy song*

And I know that almost every second of every day. I don't have to focus on it since there are so many other things to focus on moment to moment. So, when it's all lain in front of me in a matter of minutes, sitting neatly on two pages (double sided), on a clip board in a doctor's office, on a day when I'm starting to feel the tingles of a cold coming on, moments before I have to hold my son while he gets his vaccinations (extra ones for him with the coming flu season), it's not a happy moment.

*************************************************

It's now Sunday and I'm going to finish this.

Simon and I are both starting to feel better. We're no where near over this cold, Simon managing it so much better than I am, but at least we'll start the week on an upswing.

Jaime has been a saint all weekend and Abby is going up for Sainthood as well.

Simon is just perfect, three words and still crawling, he is right where he should be. Here's to a gentle week ahead of us.

Such a punim on this kid right?!!

punim=face in yiddish

Rats Beware

Today has been an exceptional day. Aside from the pasta dinner we just had, I am feeling light as air.

The day started out same as usual. Simon and I went about our business (morning feed, morning walk, morning hang out) the same and then around 9:30am we headed to the hospital for our 10am cardiology appointment.

We said Hi to Nick at the Ambassadors desk, saw Gail from the Gift shop on our way to the elevator, and checked in with Connie at the Cardiology front desk. We checked out the fish in the waiting room and then got called in for our Echo cardiogram (today's tech was Brandon
who turned us on to CoQ10 in the first place). So far so good.

What was not so much fun was Simon screaming his way through an Echo cardiogram for the first time. And, what was great was that Brandon is the fastest tech in the west (isn't it great that since we're in California I can say that).

Shortly thereafter we're waiting in one of the exam rooms for our visit with Dr Rosenfeld. Sara Scott, our outpatient nurse practitioner, found us to go over some insurance crapola regarding a home INR machine (that our insurance wasn't going to be able to cover and would have cost us anywhere from $1500 to $2500 out of pocket plus $146 per month of usage for testing strips) so that we can continue playing with CoQ10 and not have to come in every couple of days to make sure that it's not interacting with his Coumadin.

I was just seeing more and more of our savings chipped away when HunkyPants rolled in. Looking his usual dapper self he launched right into how since our last visit he'd conferred with Rosenthal down at Stanford and they'd looked up studies with Coumadin (the one hated medication that is also used for rat poison and interacts with just about everything except for air). I wasn't surprised that he'd been looking into it (but quite impressed and thrilled) since every visit for the last 6 months at least at some point during our visit we'd have this conversation:

Me: "So we'd really like to start Blah blah blah but we've heard that it interacts with Coumadin"
HP: "Right, well let me look into that but in the meantime I think we should probably keep Simon on it."

Me: "Ok, but we'd really like to work on getting him off it."

HP: "Ok, but for now let's keep him on it."

I would say we had that conversation no less than three times.

Right off the bat, he says that between Simon's function improving and his conversation with Rosenthal, we can just stop the Coumadin.

Wait a minute...hold it. Back up...Simon's function?

It looks like while not a big jump, Simon's function has crossed over into that realm that allows us to play with his medications. Play....as in discontinue Coumadin!!! That means more Rat poison for the Rats (sorry rats).

Simon's shortening fraction is now in the 20-22% range and his ejection fraction is now approximately 40%. In looking over our notes we think that when Simon was at his worst that first morning in the hospital his ejection fraction was 9%.

That is incredible. His little/big heart is doing it's thing.

We've gotten rid of the Coumadin, started a new regiment of baby aspirin and have retracted Simon's DNR at the hospital. Holy Crap Dude!!!

Oh yeah, and NO BLOOD DRAW this visit.

What a great day.

Giggle before the storm

Just had to share this with y'all since a) it's hysterical and b) we have a rough week ahead of us with a cardiology appointment tomorrow and a pediatrician appointment on Thursday.

http://www.youtube.com/watch?v=8feQWaL2LlQ

Water sports with Simon and his Auntie Dre.

Besides that it's been a nice week since I last wrote. Simon has been playing with drinking more and we seem to be back to a regular nap and nigh time schedule.

We're a couple of weeks into Homeopathy and just a few days into trying another supplement CoQ10. Unlikely we'll see anything drastically different from these two things on this upcoming echo cardiogram but like I've said before, i can't help but be engulfed with hope right before a visit.

Simon still doesn't seem to have any separation anxiety but is now showing some sign of stranger anxiety (really more like shyness) and some delightful new antics at bedtime including wiggling like a fresh caught salmon and a clear "i'm mad" new scream. It's relatively short lived but still...I can't help but wonder how I might be handling it differently if Simon didn't have Cardiomyopathy and I didn't have the image of that heart monitor from the ICU playing in my head.

Not so much whether or not I'd be more or less inclined to let him cry it out a little longer but more simply, my own reaction to it. I hate it in a way that is clearly born out of having a sick child. I feel it like a live wire has just been turned on in my body. I can't tease out what's a normal new mom response or a Mom of Simon who's a little different. Since I've never been either before that quandry will not be answered. I just know that I've never felt anything like it and it's hard to reconcile it with the slow moving, take a breath or three, type of *Ferdinand* that I've always felt myself to be.

You get extra points for knowing the Ferdinand reference :-)

Simon is still a love and a half.

Cross your fingers for no blood draw tomorrow...

xoxolaura

Simon doing his best Cindy Crawford impersonation complete with mole on lip

"What choo talkin' about Momma?!"

"Chocolate covered pretzels for dinner totally works for me!"

Or

"What I can't hear you?! I have a chocolate covered pretzel in my ear."

"Topped off with whipped cream?! I am soooo learning to eat!"

Bounce back!!

Just a quickie update.

We are back in the saddle again.

Simon has had one monster poop, one bedtime with late night shenanigans (11:14 last night), one solid nights sleep, and one full day of no real barfing and being his old hysterical delightful self.

I think what ever it was, he pooped most of it out yesterday. That really was a diaper the likes of which I may not have seen before. Impressive.

He's also clearly teething again.

Best of all, he's been so interested in trying new things with his mouth!! He tilts his head up like a baby bird when we've been offering drippings off his Nuk (OT oral tool) and several times when offered a cup will reach out with both hands and bring it to his lips letting various liquids pour into his mouth (and mostly pour right back out) OR close his lips around a small amount and work out a distinct swallow.

Awesome!!!! Frikkin' awesome. It's almost like we have a baby that eats!!

I would say that completes the cosmic redemption that was necessary after the first couple of hours of deciding to head to and getting admitted to the ER before the Fitch-Jenett karma kicked in.

Thank you all for the calls and warm wishes. Love to all.

LF

ER- a one night special not the series.

Almost exactly 24 hours ago we got off the really old school classic wooden roller coaster we'd been on, just like the Giant Dipper at the Santa Cruz Beach Boardwalk, (an up and down ride for sure,) and got on one of newer fangled roller coasters that are not very much fun at all.

This is coming from someone that loves the actual roller coaster ride. I'm not speaking metaphorically here. I love roller coasters.

Most of them.

I remember once....don't worry I'll get back to the story in a minute....I went with Anna and Hilary to the nearby amusement park, the one that has at least 6 different coasters to ride, and we were determined to try each one.

I remember the first four as being fun, familiar, and exhilarating even.

Then we tried two of the newest ones at the park and things changed. One was short with straight up and down track at either end and twists. It went too fast and seemed like it's intention was just to make you sick. The other and last one of the day seemed like a regular ride but there was something about the way that you sat and the speed and the turns that simply hurt. My neck was out for about a week. These last two were supposed to be the newest and most desirable of the coasters at the park and I left the day feeling like my relationship to roller coaster riding was forever changed.

Back to the metaphor.

So I know that we've talked about this 'ride' before and all the ups and downs blah blah blah. AND, we've been extremely lucky that for almost the last 7 months straight we have not had any hairpin turns or have the ride all of a sudden go in reverse. AND, while I can say I love roller coaster riding, no one wants to do it for a whole year or more.

24 hours ago we got on one of those other roller coaster rides. Not that much fun, downright miserable in fact. Thankfully it was short. Intense but short.

If you've been reading you'll know that for the last couple of days (almost a week and a half now) Simon has been having trouble with his overnight feed and we've been having success (or not) with various antacids. Well, Thursday night we went back on Prilosec and still, Simon woke up at 11:30 retching. By 12:45 I had dropped his feed rate down, and held him upright, with no success so I just turned it off.

Once again I started spinning about how much nutrition that meant he wasn't getting and didn't fall asleep myself for another hour.

Roxie, love that dog, woke me up at 2:30 needing to go out to eat some grass to soothe her own "I'm a doggie and I eat things off the street" stomach.

Another hour spent trying to get myself back to sleep and then a 5:30 a.m. wake up for the little man who started retching again even though he'd not been on his overnight feed at all since 12:45.

Not a great night.

Jaime was in Sacramento too so I didn't even have my snuggle partner to share expletives with.

The day did not get any better with Simon being clearly exhausted all day and while the morning feed did not go exceptionally well, by the time the mid day feed came 'round it was clear that something was really off. We had gone for a long dog walk and while Simon is usually really talkative while in the backpack, he was almost silent and just kind off dozy.
Then came the mid-day feed and nap time.

Simon barfs. We know this. Every once in a while we have a day or a couple of feeds in a row where there's no barfing but since the morning went not so great, the fact that the noontime went even worse made me start to feel like something was not right. He didn't even make it 1/4 of the way in before the retching started. In a world where 'not quite right' is the norm, when something seems off from there....and it's historically been really bad (think sepsis in the hospital) it's time to start moving into action.

I started to make phone calls and after about 30 minutes of Simon not sleeping and confirming that he was 'off', I had had conversations with both his GI Dr and Cardiologist, we were headed to the emergency room at Children's Hospital Oakland. Simon had not kept anything down for over 12 hours and was more than likely dehydrated among other things. It's not worth it with him to wait, so we headed in for an Echo, IV fluids, and a full blood work up.

I texted Jaime on our way there and she was able to head home from Sacramento early.
Luckily, when we got to the ER there was only one family waiting before us and within 10 minutes we were in a room having been triaged and waiting for the ER resident. Dr Rosenfeld had called ahead and we got an Echo and consult with Dr Curio (the Cardiologist on call) even before Jaime arrived two hours later. By then we had figured out that it wasn't Simon's heart (they even thought that the Echo looked a "little better" than it had in June) but we should do an X-ray and a full blood work up just to be safe. Dr Curio even intimated that we likely wouldn't need to be admitted since we live so close and a bolus of IV fluids could at least hydrate the boy and give us some options over the next couple of days.

When we got back to the ER, from the Echo lab (the tech was a little shocked when I said I knew where I was going) Jaime was waiting for us. I caught her up on where we were at when the nurses came in to start an IV and get a blood draw.

Here's where the story gets going more like a Fitch-Jenett CHO visit.

First Jaime comes back from getting water and tells me about the nurse that gave it to her. A younger nurse that sassed Jaime right away as being "high maintenance"-jokingly. Then that nurse and another come in to do the blood draw/IV placement. Right away I tell the older more "in charge" nurse that Simon is a 'hard stick' and that I usually hold him in my lap. As she replies somewhat defensively(and tells me to get my shoe off the bed) that she'll need to lay him down on his back, Jaime notices a strong accent and right away asks her where what part of Massachusetts she's from. This breaks ice immediately and all of a sudden we're talking about western mass, strong accents, and the strange tradition of adding 'r' to the ends of words where it clearly doesn't belong.

Two minutes into it and she says "wait, are you both his mothers? That's so cool!! You guys are so different from each other." She then goes into how both her sisters are lesbians, one of them "more like you" (referring to me, Laura) and the other "is more like you...a lipstick lesbian". This last term was only employed after I gave her permission to use the term 'butch' for me freely.

From this moment on and for the next four hours it's like it was an intimate affair with friends and all the perks and privileges that come with that kind of intimacy. I was allowed to hold Simon during his blood draw (first try thank goodness), we were told to go get dinner and feel free to bring it back to the room, we were kept alone in a double room and allowed to turn the light off so that Simon could sleep once the IV was started (even though the ER got super busy) and last but not in any way least, Betsy- the nurse from Boston, told us something very special about the other nurse that was helping her/us with the blood draw once she was out of the room.

She has cardiomyopathy.

For reals. What are the chances? This is the same nurse that jokingly sassed Jaime, that we already have a rapore with and like a lot. Betsy told us that she would ask her colleague if she wouldn't mind coming back in and talking to us about it.

When she came in a few minutes later she told us her story. She was in her 30's but contracted DCM when she was 11 from a bad case of strep throat. She'd had open heart surgery twice to replace valves and was still on some of the medications that Simon was taking. Both Jaime and I got to ask those "how did you feel?" or "what was it like for you when...?" questions and just like with Mo and Cynthia, got another glimpse into a possible future for Shimmy.

This was just another way that we are so lucky and provided for when the chips are down.
Yes, we had to spend 7.5 hours in the Emergency room. Yes, Simon had to get poked and work his way through some kind of crapola making it's way through his little system. Yes, we had to wait hours just to hear that his bloodwork was coming back normal.

{The best was when his Resident came in to tell us about his chest x-ray
She: "So, his chest x-ray came back. Um... it looks normal...(pause)...except for...um....(long pause)....................."
Jaime: "His very large heart?"
She: "yes, right (nervous laughter)."
This was preceded by me telling the resident what blood tests to order for Simon, adding on two tests that she wouldn't have even thought of ordering but given what new meds I know he's been on would have needed to be ordered at a later hour anyway.}

I'm not getting paid enough.

Really.

At this point Geralyn (one of our regulars from the ICU) comes down on her break saying that word has reached the ICU that we're here and that we might be admitted. This is news to us since we'd spoken with Dr Curio, the Cardiologist on call who knows us pretty well and said earlier that he'd be more than comfortable sending us home given how well we've been taking care of Simon and how close we live. I share this with the resident and she leaves to double check this new bit of info.

Admission averted.

By this time Simon is sleeping comfortably given the IV fluids and is almost an hour in to a slow feed with no retching. (Huge shout out to Dre and Joan for coming by right away and then coming back with home supplies).

Another hour and we are home with no concrete information on why the little man had been having such a time of it but home anyway with Simon continuing to tolerate a slow overnight feed and immense gratitude to be home in our own beds.

Today has been a good day. Not great for sure but really really good. We had a little indication that Simon is in fact fighting some GI bug since the late morning held a monster blow out in the little man's diaper AND that it's passing as he's been much more his old hysterical, smiling, babbling self.

I will say that tonight before putting the little man to sleep (he's not asleep, let's be clear, it's 9:44pm and we're still in the chatty-kathy bedtime space) he did drink more than I've ever seen him take by mouth since we've been home. Apparently some hot weather and some Odwalla Blueberry C Monster work for him. Tablespoons I tell ya!!

Tomorrow is another day and we'll continue to hope that he holds down his Pediasure. I love the weekends and family time. I love that it's not his heart. I love that we are held in such care from people that have know us for years, months, and even hours.
I love that we are home.
I love that we are home.
I love that we are home.

I feel rich beyond belief.

Most of the time.

I mean c'mon, it was a seven and a half hour trip to the emergency room.

"ER ShmeeR. Look what I can do!"

"Dude! How cool was that?"

One step back...forward? (get comfy, long one)

It's been an interesting couple of days with PopPop and MM heading home, GI appts, new antacids, 4:00 hour wake-ups, and starting homeopathy.

Simon said goodbye to his East Coast Grandparents on Monday. It was incredible to watch him take in this particular 'goodbye' in a different way. I've never seen him watch folks leave the same way that he did my mom and Dad on Monday morning. He did not break his stare on either of them the entire time we were standing and saying our goodbyes, to watching them cross the street and get into their car, to following the car all the way down the block until it turned out of site. It was a little heartbreaking and a lot beautiful to watch. He's 'getting' so much more these days.

Our GI appointment was uneventful except for that Dr Gleghorn said that Simon was "perfect". Yay! We're working on getting off the antacid that interacts some with two of his heart meds and giving a milder one a few more days to see if it works. I'm afraid that after his first night on it, and a 4:32am wake up/barfing session, that we might need to get back on the first one. Yes, Simon is on the same antacid medication that his Grandpa takes. Such a little old man toddler we have :-)
I know it's terrible and exhausting but there is a part of me that loves those early morning wake ups. It's not so much formula left on his overnight feed that we can't make it up during the day (and Dr G said that while he's perfect, he'd still be perfect if he lost a little- bound to happen I'm sure as soon as he starts walking) AND if it's early enough in the morning (not like 2am or even that rough 11pm wake up/ barf session) then he gets right into bed and snuggles down for a couple of hours.
There's not much sweeter than a Simon Lev in your bed, head tucked into your neck, turned mostly horizontal in the bed, right arm flapping every few moments thwacking your face as he falls back into a deep slumber. Deeeeelish.

Besides that it's been a week of getting back into our groove with Simon taking nice long naps during the day, swimming at the Berkeley Y and oh yes, scaring the crap out of his mommy today with what appeared to be some decompensating symptoms.

But I get ahead of myself.

Let me go back to Friday July 31st.

After waiting two months for an appointment with Dr Roger Morrison, apparently one of the best known Homeopathic Dr's in the country, we had our two hour session. He is a lovely man who clearly knows his western medical jargon (he happens to also hold an MD). But it wasn't until the end of our session that I had the most interesting exchange with him.

He told me a little about the remedy that he'd chosen for Simon, based on a lot questions for me about my pregnancy and Simon's first 4 months before his hospitalization and mentioned how the next several months would go in terms of a working relationship with him/ homeopathy.
He asked when our next Echo cardiogram was (in two weeks) and said "well, we might not see the change that soon but when you see the change in the following Echo call to schedule your next appointment."

He didn't say 'if', he said 'when'.

It didn't quite hit me until we'd left his office but that's what he said.
What if it's true? What if this can really speed up Simon's slow (I mean really slow) but steady recovery? I'm not living in the hope because it's too exhausting (day to day is how we roll) but it's there. It's out there that there is a Dr that has full faith that what he has prescribed for my son will help his heart heal.
I love that.
I can't live there...but I love it. Once every two months is enough right now to have that intense hopeful feeling that "maybe this Echo will show drastic improvement...maybe it's this one...maybe Rosenfeld is taking longer coming in because he's gathering all our team to deliver the good news...maybe".
Yeah, every two months is hard enough.

Aside: What kind of fucked up disease has that kind of spread in it's prognosis- at any given time there could be drastic improvement, sudden cardiac arrest, or no change at all. THAT is messed up!

So anyway, our remedy arrived in the mail yesterday and we started with it fresh this morning.
Simon took his remedy, diluted in water like a champ (a champ with some gagging) and I figured that this was just another bit of mixing and administering that I would add to our already impressive med area in the kitchen.

And then it happened. I was putting Simon down for his afternoon nap and as he fell asleep in my arms I felt it.

That terrible familiar dampness that only comes when he's falling asleep. A cardiac sweat.
Fuck.
He was also breathing just a little harder than normal and I thought that I heard the faintest of faint wheezes.
Fuck.

After I put him down I sat and listened for a while and relaxed a little as I heard his breathing become silent. He seemed to dry up as well and with only about a tenth of my body frozen with fear, I left the room.

I don't know whether it's kismet, fate, or just great timing but my mom happened to call just then and as we were talking she asked if his remedy had come in the mail yet. I told her yes and she asked me to remind her what the name of it was since neither of us had really heard of it before. She was driving and so couldn't do it herself but she asked me to look it up online and see if it was in fact of the Arnica family (something we both thought that Dr Morrison had mentioned- still don't know). Right there in the first paragraph, talking about what it can do, it says " Its action is shown on the heart first quickening, then retarding it."

Riiight. Homeopathy can sometimes increase the symptoms that it will eventually work on getting rid of. My mom reminded me of that and Jaime confirmed it again when she came home.

Now that doesn't mean that I'm not going to keep a little extra attention to Simon's heart rate and overall being, but I have to say, I have a good feeling in my gut.
Unless of course Simon is in fact decompensating and then I'm going to feel terrible but really...we've been told that he's stable and we're not likely to see that kind of decompensation without something significant happening for him.

So without exhausting myself, I'm going to call Dr Morrison tomorrow and check in, sitting here in hope. Just sitting, legs comfortably crossed, glass of water nearby (ok maybe Diet Dr Pepper), reading material on hand (those of you that know me can guess what it is), and just wait.

I will continue to enjoy each day, draw his meds, work to minimize the barfing, marvel at his development, laugh at his new sounds and facial expression, and add this new remedy that may in fact be making my son's heart stronger.

*Sigh*

One year ago...

One year ago today, almost to the hour that I am writing this, Simon was admitted to hospital and diagnosed with Dilated Cardiomyopathy.

It was a day where I think I came close to understanding what "living hell" really might mean.

And, here we are today with a beautiful boy, an incredible community and family, and so much more love in our lives than I could ever imagine.

Simon is still in heart failure but he is also thriving and stable and living with a fire in his belly and a smile on his face.

We are so blessed.

All the grandparents, Auntie Jen, Uncle Frank, and cousin Maya, plus several of our closest friends joined us for a picnic in the park and we sat for a good 10 minutes, surrounding Simon and sang to him. It was a chance for him to see and feel, really physcially feel, the circle of people that have been 'holding him' for the last 365 day cycle around the sun.

For sure the circle would have been much wider (I'm thinking 'round the perimeter of the city of Oakland) had you all been there in person, but it was still incredibly sweet to watch him be engulfed and take in the love. We sang the "oh little Simon, little Simon Lev" song, making up versus as we went, and he just got all still and focused, taking it in.

He's incredible. Really a Superman. Here are some shots from the day.

Superman gets ready to take off with the help of PopPop

Soooo Happy

When the little man wakes up we're off to the ICU to deliver cookies. Here's the flyer that Jaime made up for the folks at CHO. I would say it's good for you too (sorry the cookies don't translate through so well)

THANK YOU!

One year ago today (August 1, 2008),

you came into our lives

when Simon was admitted to bed 4 in acute congestive heart failure.

August 3, 2008

As you may remember,

there were MANY ups and downs,

but your love, patience and excellent care brought us to today…

You are all working miracles every day.
Thank you for giving us this year with our son.
Jaime Jenett, Laura Fitch and Simon Lev Fitch-Jenett