A New Year Starts Normal

Tonight starts the celebration of the Jewish New Year. We eat apples and honey to start it off sweet and pray for that to continue.

Simon started it off with a visit to Cardiology.

And it was sweet.

Momentous even.

Simon got through his EKG and Echo with an even greater maturity than last time. He only started saying "I'm finished" just a few minutes before we actually were. He gave Sarai (the echo tech) a beautiful hug afterwards and only told about a million people that he was looking for Dr Rosenfeld to say "Hellllloo!!"
After a nice long wait, quality time spent with the puffer fish in the aquarium, Rosenfeld comes in, gets high fives, and starts:

Simon's echo looks really good. His shortening fraction (SF) is up to 29 and his ejection fraction (EF) is up to 50. He'd like to stop giving him baby aspirin, and discontinue Digoxin, and why don't we go from 3 doses of Lasix down to just 2.

I'm trying not to pee my pants and take it all in.
I know those numbers. They have significance. What is it....? Oh yeah, I remember THEY'RE IN THE NORMAL RANGE!!!

Simon's heart is functioning in the normal range. NORMAL.
WTF.
 (forget initials) WHAT THE FUCK?!
We're taking him off meds. Those are the specific meds that support function and he doesn't need that because HIS FUNCTION IS IN THE NORMAL RANGE!

Of course I'm scared. Of course I'm wondering where the heck this man got his quack medical degree (Harvard). But I'm also feeling a million pounds lighter and so freaking proud of my son. He's done it. He's taken his sweet 3 year time but he's done it. He's given himself the gift of normalcy and we can only hope/assume that this will be the only arena that such a thing will occur.

But holy shit, dear family, friends, and wonderful reader, we are celebrating over here.

It doesn't really change our day to day.
And, there's not much sweeter than this normal.
Shanah Tova, a Shanah Tova to you all.

Brutiful

Jaime:
Yesterday we went to the George Mark Children's House for a preliminary visit as we prepare to have Simon stay there for respite care.  It is the first and currently only, freestanding residential pediatric palliative care facility in the U.S. It's kinda magical.  Simon qualifies for 10 days per calendar year for respite care for us, including overnights.

We walked through much of the tour with tears streaming down our faces.  It was the first time I have ever really felt like I have seen the tangible realization of someone's dream.  The people that designed this place KNOW what we need, what will soothe broken hearts and frayed nerves,  allay fears and free up laughter.

The building is light and airy with views of the garden out of every window.

Every child's room has a theme (safari, RR crossing, etc) and a beautiful mural on the wall done by a volunteer.  The zoo brings animals every week.  Before it died, a camel used to come INTO the House to visit children. There are nurses and CNA's on site 24/7 and a physician on call. There is a big play room, an arts and crafts room, a small pool for a therapist to work with children in the water.


There is also a suite for families who are staying there for palliative (end of life) care and a special room for families to say goodbye to their children as they die. With a crib that is, essentially, a heating bed, to give families more time to say goodbye before a coroner has to come.  Laura had to step into the bathroom to cry for a minute when we learned about that feature.  It is my fervent desire never to use that room for it's intended purpose and I think it's brilliant.


There is a beautiful chapel in a simple, Quaker-like style.

And there is a fountain outside filled with stones with the name and year of every child that has been to the House who has died. 

It is a most amazing and grim place for families like ours that walk in the shadows of death and disease. I'm so excited for us to have a beautiful, loving, fun place for Simon to stay, for free, so we can have some time without worrying and I can't forget that this is the place that I researched the weekend it looked like Simon was dying.  


I can't quite wrap my brain around it.  


It is, as my friend  says, "brutiful".

I also can't quite settle in to the idea of leaving him overnight in an INSTITUTION. As I said to Laura, it feels a bit like a pig in a dress (no offense to piggies- I love them). Yes, it's this beautiful, warm, love filled place, but it's still a medical facility with oxygen hook ups in every room and nurses watching over him at night. I know we'll get over it and utilize the services but I think it's going to break my heart a little.

Meeting one of the children that was there when we visited was really hard. He is a teenager who recently had an injury that deprived him of oxygen. He's this totally handsome, healthy looking guy who can now only open his eyes. That's it. He's on a ventilator and spends his days in a reclined wheelchair. Seeing him next to Simon running around, chatting and playing, it was was really hard to reconcile how they both qualify for services there. It feels like we're somehow taking advantage of the system or something. Simon is not SO disabled, he's not SO hard to care for medically, he looks SO good, we should leave the services for a family that *really* needs them. And then I remember that the last time we tried to go away for an overnight, we ended up coordinating 10 people to make it possible.

Almost from the minute I walked through the doors, I decided that if I am ever going to do fundraising for anything, it will be for George Mark House. It provides services that we all pray that we will NEVER need in a clean, beautiful, love-filled environment. I feel like it's radical that it even exists. This nation spends millions of dollars to avoid death and pretending like it's not coming, until the bitter end. Our old and our sick die in less than ideal conditions in hospitals every day.

Getting to say goodbye to a child in a place like this instead of a noisy, crowded, public, stressful ICU is probably the biggest contradiction I can think of to this cultural obsession with cheating death even when it is staring us plainly in the face. The House gets reimbursed somewhat now through Medi-Cal but gets no reimbursement from the type of respite services that they're offering us. If you know anyone with deep pockets, please let them know about this amazing resource. They can find out more about donating here.

Laura:


I don't think it hit me until we were 15-20 minutes into our tour.


The George Mark House for Children is a lot like a spectacular resort for young people. From months old to late adolescence, they haven't missed a thing. Toys, TVs, a nice size hot tub/mini pool. light, green growing things, climbing things, swinging things,visits from furry things, tasty things...it's all there.
And then you remember why it's all there. To provide a little bit of joy in a mammoth time of sorrow. Whether it's for an end of life situation or simply some respite in a life of consistent traumas, it's not a vacation. That's not why you go to GMH. You go for respite from your daily life, you go to say goodbye, and you go there because everything else (but why you've gone) is completely taken care of for you. They feed you, literally, spiritually, recreationally. It's amazing.


So, we're getting our tour and the social worker in me is marvelling at what they've set up and thinking how I'd really love to work here someday. I'm thinking that it would be such a good fit for me when I decide to go back to work given my love and experience working with children. I think how much I might have to offer not only the kids but certainly their parents as well.


Then it hits me.


I am those parents. Jaime and I are here as those parents. Our son qualifies for the level of respite care provided here. We are here because someone looked over Simon's history, and current status and sees him/us needing some respite care and the George Mark House for Children is a good fit.  


I'm still seeing the amazingness of the place, the resources gathered, only now I'm feeling that strange parallel universe thing when you see one thing, feel another, and the two don't jive but you know they are both true.


Simon is skipping along, charming the staff, loving the jungle themed room, begging to get into the hot tub, fist pumping "go George Mark!" and I am not believing and knowing at the same time that this is a place that he will come to, spend the night, and be well cared for.


This place where some families come to say goodbye to their children. This place where right now there are only two guests, one of whom is in an isolation room and the other who sits with his father in front of the 72 inch plasma screen in his wheel chair, ventilator pumping air into his lungs, colostomy bag half full, not seeing the football game or even moving when Simon pulls on his hair in greeting.


Somehow, the child that is hitting a most typical toddler stage, where 'no' is his favorite word, and passive resistance/dead weight is his favorite activity, who never seems to stop talking or changing or charming, somehow this child o' mine fits right in here. He will have his picture up on the wall and we will come for events and fundraisers. He will have his favorite room and nurses and volunteers. He will make this another home.....just a few (10) days a year but still. He has already marked it.  He didn't pee or barf here yet but still. (Most of yesterday afternoon was already punctuated with "I want to go to George Mark). It's his now.


I don't feel it settling just yet. There's a discord.


We are meeting with his teacher on Thursday to discuss how he is doing in his class; whether or not it's still appropriate for him and/or we need to look for other ways to keep him challenged.  He is hitting a most typical 3 year old phase where he's testing, pushing limits, and asserting himself. His language his play, his discovering the world....it's all moving at light speeds.
His heart is stable, growing stronger, and he's moving through kid bugs as smoothly as possible. He's strong. He's starting to run (like a drunken sailor but it's still running) and jump, and hang from bars. It's beautiful to watch.


And Simon qualifies for the George Mark House for Children. He has a critical heart condition. He takes 7 meds in the morning, one in the middle of the day, and 5 at night. He is dependent on a pump and surgically placed gastronomy tube for nutrition, and attends a special education class along with Speech Therapy, Occupational Therapy, Physical Therapy, and Feeding therapy once or twice a week. He will be at risk for congestive heart failure for the rest of his life and currently has mild decreased heart function (although we'll see where we're at this Wednesday with our regular Cardiology Visit with Dr. HunkyPants- fingers crossed).


He also just traveled to Boston, has a new love for Zebras, can name at least 4 Dim Sum dishes, and knows how to count to 100. He loves construction workers and sometimes pretends to be any one of his three main Dr's (I have to get a little excited when he says "I'm Dr Rosenfeld!" cuz who doesn't want their child to grow up to be a Cardiologist- insert stereotypical Jewish mother tone here).


It's all true. Somehow the pieces all come together to make this most beautiful mosaic I like to call Simon Lev. When I take a step back, which isn't often because the here and now require a lot of attention, I can see it. But, when I'm faced with such discord in the same place, I don't know how to hold it.


And maybe that's it. It's not mine to hold. It's there, but I don't have to hold it. Kinda like parenting I think. Your Children are not your Children, they are the sons and the daughters of life's longing for itself. They come through you but they are not from you and though they are with you they belong not to you. 


I think for those of us with kids that got a little something extra going on, the lesson is just a little more in your face.  It's that surrender feeling. I surrender to this life that Simon is living. That doesn't mean that I won't remain ferocious in working to make it the best life possible. Ack, double negative.  Let me put that in the positive.


I will remain diligent, ferocious even, in working to make Simon's life as spectacular and meaningful as possible AND I surrender to the life that keeps coming his way.


I love my family. I love my community. My wife is amazing. My son is incredible. Cardiomyopathy sucks, and Simon is back to napping. Goooooo George Mark!!


Spreading the love:

With Ati and Ardalon in the bounce house

Reunited with Mamaw (and it feels so good)

One of Simon's man-crushes- Satish

Our Little Racehorse

Simon is starting to catch up developmentally.  It's freaking awesome.  And it's totally throwing a wrench in our nicely laid plans, damnit.

Simon's special day class happens to be at one of the best public elementary schools in the entire district. We adore his teacher.  School is a 10 minute drive from our house.  It's in a fancy neighborhood with lots of trees and green open spaces, not freeways and big rigs driving right by like some of the other schools where special day classes were offered to us. 

And Simon, after a summer spent with typical kids at summer camps, is kinda leaving the other kids in his class in the dust.  And doing his best to show how over it he is when he's at home.  

And making us a little C-R-A-Z-Y.  (By the way, he could sight read each of those letters.) 

Little man is finally starting to make sense (most of the time) when he's chat-chat-chatting.  He starts talking, literally, from the minute he wakes up, until he goes to bed.  In the mornings, we lay in bed waiting to hear what the phrase of the day will be.  Will it be "I'm a scuba diver!",  "Go Secretariat!" or "Yo Ho Ho and a Bottle of Dolphins"?  He sometimes wakes up in the middle of the night and just has to chat a little before he can go back to sleep. 

He's counting to 100 in English, to 20 in Spanish, to 10 in Hebrew.  He knows at least 30 words in Hebrew.  He's getting really good at electronic puzzles and wants to read endless books with us.  He's figuring out how to use full sentences to ask for things and is learning how to manipulate people on the street with his dashing good looks. 

He's still the size of a 2 year old and way behind other 3 1/2 year olds in almost every way but dang it if that kid isn't gaining on 'em.  

For the last few weeks, Laura has been coming home on Wednesdays (when she picks him up from class to go to feeding therapy instead of him taking the bus home) and voicing increasing concern that he seems like he's "not among his peers".  For the first time, it's that he's more ADVANCED.  We shot a quick email to his teacher and she confirmed that, indeed, we should talk about maybe having him evaluated again.

This is such good news and...sends us into a bit of a tizzy.  We were just getting excited to get into a groove. We know his school, we know his teachers, there have been no glitches with his feedings at school.  We got this.  And.. I think it's all about to change again.

The thing we're spinning about most is whether or not there will be an appropriate special day class through the district. There is a special day class that is an "inclusion" class, which means that there are 12 typical kids and 6 kids with IEP's.  That might be a good option given how much ground he gained being with typical kids this summer, but that's a lot of kids for him to be exposed to germ-wise.  We're going to check in with his cardiologist, Dr. Hunkypants, to see if we can take a calculated risk and expose him to more germs in order to catch up developmentally or if we need to still be hyper vigilant.  Another option is that if he doesn't need special ed for development anymore but still needs a small class due to germ concerns, we could try to get the district to pay for private preschool.  Sounds dreamy, but like a hell of a fight. 

Simon has been obsessively watching the final race scene in the movie Secretariat.  Like every morning for the last 2 weeks.  For those of you who are unfamiliar with the movie, it's about an underdog racehorse who ends up being the fastest horse that ever lived.  It's total Disney schmaltz and it makes us tear up every fricking morning.  No one believed that this horse would ever amount to anything except for one woman who convinced 2 trainers and a jockey to take a chance on him.  They worked with him and believed in him and kept believing in him, even when he seemed to fail.  In his final race, Secretariat's jockey took a leap of faith and let him run at a pace that seemed completely impossible to sustain, dangerous even.  He ended up winning the race by 31 lengths.

It feels a little like we're in that place of figuring out how much lead to give Simon, how big a risk to take, to let him find his stride.  He's certainly chomping at the bit. I fear he might drive Laura to drink if we don't find something better suited for him. We have a meeting coming up with his teacher and maybe another IEP meeting.  I have faith that the right choices will be presented and that Laura Fitch will fight to the death to make sure we get the best one.  God, I love that woman. 

And now, a few photos...

Looking oh so cute in Vermont

Getting some BIG love from Pop Pop 

s

Laura, Simon and Pop Pop in gorgeous Vermont 

Simon looking REALLY unsure about the grasshopper Mommy has on her finger

A little Parent Infant Program reunion at our house

Go East, Young Man

Another blogger recently described vacations for stay-at home moms as taking their work with them but in a whole new environment that is totally not set up for their needs.  I think that could describe the experience of anyone traveling with a 3 year old.  It's been very sweet to see folks and...not what I would call a "vacation".  This experience shall now be called " Our 2011 Trip Back East to See People We Love".   Simon is a trooper.  Mommies are wiped out and hardly had a minute together because one of us is on the boy so the other can spend time with whomever we're visiting.  We might need a vacation after our vacation.

We spent Fri-Monday in Newtonville, MA (just outside Boston) at our friend's Dad's house (thanks Dan and Bara!).  Here are a few pics:

Simon looking adoringly at his Auntie Maia, in Newtonville, MA

Mama and Simon, trying to not get eaten by a shark at the New England Aquarium

Simon, cooling off at a park in Boston.  

Laura, explaining the Hebrew on her tattoos to Joshua, the quirky Orthodox Jewish kid who totally got that we were married and that therefore, Jaime/Mama is part of Laura/Mommy's family. 

Simon and Pop Pop on the Carousel near the aquarium

 Ending the Boston leg of our trip

Monday morning, we left Boston and drove through Western MA to visit our old college (Smith and Mount Holyoke) stomping grounds. 

A big old passel of long time friends and their kids (24 of us total) meeting up with us in Northampton.  Plus a random Smith senior on the far right side whom we invited to join us in the photo. 

We had a great few hours there and then drove up to Vermont.  It was a pretty heartbreaking drive.  The massive damage was evident in almost every town we drove through.  Restaurants with every piece of equipment out in front trying to dry out.  Houses with all their belongings heaped in a pile at the roadside.  Homemade signs warning folks that bridges were out or about new routes.  Roads washed out.  It was all a little shocking.

 Since we've been in Vermont, we hit the store for some basics, like Dragon sunglasses

 Smooching at a playground in Rutland during a break in the rain

Going to the Montshire Museum, about an hour and a half northwest of our town.

Lying on a Black Bear (a stuff one, fear not)

Eating lunch at the King Arthur Flour Company aka Baking Mecca

 And lots of swimming at a pool where Laura's parents have a temporary membership.

We have 4 days left- 2 in Vermont and then back to Boston for a make-shift Farm and Wilderness camp reunion (the camp is completely cut off and the reunion was postponed until next year due to the damage to roads from the floods).   We might get to meet a family or two from our Cardiomyopathy listserv who live in New England, which would be amazing!

New England is gorgeous and...Oakland is a pretty awesome place to come home to.  It's good to be us.

That Mom Part 2

One child receives a new heart and one child's heart stops beating. That's been the last 24 hours for us over here in Cardiomyopathy Village.

And I am that mom.

The one who runs into a door jam and curses loudly (hoping that Simon will not pick up motherf-er and repeat it all day at camp). The one who primes his tube feeding set up and then lets it run all over the counter because I forgot to put the extension end back into the bag as I left it to go get his meds and barf towel in place.  The one that pours her half and half into her coffee and lets out another mother f-er as the top comes off the bottle and half the container makes it into my cup, spilling out all over the counter at our local bakery.

I am that mom.

Not the mom who had to make the unthinkable decision of taking my son off life support and letting him go.

Except I have been that mom. It just ended differently.

Jaime and I were those moms for about 48 hours. There was that weekend where we went down to Stanford to meet with another heart doctor to decide whether or not to 'list' Simon for heart transplant.  When Jaime and I decided not to, we assumed that it also meant that we would need to begin the process of saying goodbye to Simon. We spent the next 48 hours looking into hospice and palliative care. We talked about organ donation. We held and touched Simon in different ways. We walked, talked, ate, slept, and cried with Death. She was right there with us.

I will never forget that morning as shared our decision with Dr. Rosenfeld and asked should we get started with palliative care.

I will never forget that "Oh no, we have a few more things to try."

That "Oh no".

Oh. No. Two words can be said in so many ways. This was like a dismissal accompanied by a shrug of the shoulders, a gentle frown. Like something you might say to someone that offered you a second helping of a very rich dessert. "Oh no, I couldn't eat another bite."

Except this was "Oh no, I don't think were there yet."  "Oh no, you don't have to say goodbye to your five month old son just yet."

Oh no.

And that was the turning point for us away from Death. Or her from us.

And, I will never forget that time. Those 48+ hours where Jaime and I did what no parent should ever have to do or even think about.

But Brooke and Lee did it. And their 'Oh no' was very different than ours.

Lachlan has been let go and there are only so many of us (too many of us) that are reading this blog, or simply getting started on their days that know or almost know what they are feeling.

There's sympathy and then there's empathy. And this morning I am that mom. I have empathy. I am sitting with Brook and Lee. As close to them as I can get. Through passage ways that are only meant for the Divine. I am sitting here on my couch, as close to Australia as I can get. As close to understanding the death of a child as I can get. It's pretty close.

But, I am this mom. Not that mom.

I dropped Simon off at day camp this morning. He kissed me goodbye with a viking hat on, one horn pointing up the other horn pointing down.  I will pick him up in one hour and forty minutes and we will go right to the potty to see if we can manage a poop in the toilet and not his diaper. I will give him Lasix via his G-tube at 2pm and then at 5pm we will head off to our therapeutic horse back riding session. Then we will have Shabbat dinner with dear friends, lighting candles, drinking wine (juice) and breaking bread.

I am that mom. The mom that learns that her son is knocking down other kid's block towers and not saying he's sorry. Granted he's doing it because he's developmentally delayed and more like a two year old instead of the 3 or 4 year olds that he's at camp with...but still I am that mom.

That mom that, for the time being, is loving, touching, being exasperated, surprised, amazed, pushed to the edge, delighted, and inspired by my son.

This Cardiomyopathy...this thing...this life...this morning....it's all so much. And for little Brooke who had her transplant and is not yet 24 hours post surgery...Rock On! She is already asking to go to the playroom at the hospital and getting to spend hours snuggling in her parent's laps.



I'm gonna take a breath right now and feel it all.  You could do it too if you want.

 It's a lot right?




Here are some pics from the last two weeks

Simon enjoying Djaffar (and vice a versa)

Simon, on the first day of Monkey Business camp,

 fell in love with 'Bob the builder' Aka Dylan

 At Horseback Riding Therapy. Helping out Orlando

In love with Renu, visiting from India

Leg warmers and Arm warmers for the morning dog walk

Simon's new favorite mode of transport

Post wedding

VikingSeries

Last night with Reagan

Heartbreak

"Now cracks a noble heart. Good-night, sweet prince; And flights of angels sing thee to thy rest."

It is with such a heavy heart that I tell you all that little baby Lachlan in Sydney will be taken off life support today and allowed to go.  He evidently suffered a cardiac arrest 6 weeks ago and an MRI yesterday determined that his brain damage from that event was so severe that his little body can't regulate itself on its own.

I don't quite have words...

You can shake that love tree and offer condolences at the "Fight for Lachlan Hulsman" page on Facebook.  They're going to need it.

So much love to you all...

Shaking the Love Tree

When we were in the ICU with Simon, more times than I could count, people we'd never met did something nice for us. They had heard about us from friends, or friends of friends and decided to reach out. Sometimes it was food dropped off at the hospital, sometimes it was an email to tell us they had heard about Simon and were thinking about us, sometimes it was a hug on the street if they recognized us from our blog. These small, random acts of kindness began to knit a web that kept us suspended just out of the pit of despair when things were really bad.

There is a family in Australia that is in that hardest, darkest place right now.

A woman named Brooke, emailed me a few months ago after finding our blog. She has a little boy named Lachlan who has the same heart condition as Simon. When she first emailed me, she said, "We have been captivated with your blog ever since we stumbled across it a few weeks back. We've cried, laughed, but most of all we've related to almost very story told. Thank you for sharing your story. It really is like we are reading our own day to day life. I've even sent it to my family to read.....telling them to change the names to Lee, Brooke and Lachie, and it's us!!"

It was a very sweet message and we've stayed in touch, comparing notes, checking in, etc. Her story reminds me so much of our story with Simon and I feel a deep connection with this Mommy and her family, even though she's so far, far away in Australia.

Her little baby, Lachlan, is 10 months old, and has been pretty stable since he was diagnosed at 2 weeks old.

Until now.

About a month ago, Lachlan got very ill and has been in hospital since then. He seemed to be making good progress and got sent home but 8 hours later they were back in the ER and now he's back on life support.  The doctors don't really know what's going on.

My heart is *breaking* for this family. They were trucking along, just as we are, and now they're back in the pits of hell with machines and drips and lots and lots of unanswered questions. This could be us with the flick of a wrist.

This post is actually an ask.

I'm asking anyone who is reading this to mobilize all your friends to shake the love tree and bring them the spoils.

If you are in Sydney or know someone who is, and have love to spare, here's what you can do/bring to the Sydney Childrens Hospital in Randwick:

Cookies for them and for the staff (always helps to grease the wheels!). Make them a meal and leave it at the front desk (they have no dietary restrictions). A fruit basket. Trashy magazine. Warm cozy socks. Eye pillows. Books they can read to Lachlan, even while he's sedated. A mix CD. A snuggly something for Lachlan to have in his crib with him. A homemade card. A goofy postcard. Anything you can think of that would make them lift their head just enough to remember that they're not in there alone.

They may not be up to meeting you face to face, so it's probably best to see if you can drop things off at a front security desk - tell them it's for the Huslman family.

Let's shake this love tree, people.

p.s. you can follow their journey on Facebook by liking the page "Fight for Lachlan Hulsman".

UPDATE: August 19, 2011- Tragically, today the Hulsman family learned that Lachlan suffered severe brain damage as the result of cardiac arrest 6 weeks ago and made the decision to remove him from life support.  Our hearts are breaking for them...

That Mom

Sometimes I want to be that mom. Not the mom that wakes up and first thing disconnects a tube from her son's belly that just administered medication.

Sometimes I'm tired of it. I'm tired of sitting and pumping food and medications into my son while we watch Monsters Inc. for the 85th time so that he'll be still and less likely to throw up that food and medication (all over the couch, himself, the dog and/or me).

I want to be that mom. The mom that stresses over the fact there was a half eaten plate of scrambled eggs instead of a clean one. The mom that sighs heavily over cleaning up said scrambled eggs off the floor. I want to be the mom that doesn't have to clear seven syringes off the table every morning but maybe a sippy cup instead.

I would be that mom in a heartbeat.  That's not funny. Heart beat.... Not fucking funny.

There was a boy today at day camp that was just losing his shit. His Dad had dropped him off and he was NOT happy about it. Huge tears rolling down red cheeks. Sniffling. Hiccuping with the sad desperation of separation.
I could see the gut wrenching his father was feeling as he walked away knowing that it was what needed to happen.
I would be that parent in a heart beat (fucking heartbeats).

Instead I get a quick kiss without eye contact because the Barn is up and you can actually climb inside of it (once you've kissed Mommy goodbye.)

I'm not proud of my son who is so well adjusted and secure. Today I would trade that in for another Simon that hasn't gotten used to dozens of doctors, nurses, therapists, friends and family that have come to take care of him, wish him well, make him do exercises, take his blood, work on speech, listen to his heart, distract him.

I would like to be that mom. The mom that stresses over leaving her crying son but then finds out at pick up that he mellowed and played well for the rest of the day. Shit, I'd even rather be that mom that gets the call an hour later that he's not stopped crying and could I come and get him.

Instead I'm the mom that walks into the room,  drops his feeding pump bag off in the fridge and checks his diaper stash in his cubby because potty training is so far off for this three year old due to diuretics and stool softeners and language delays.

Today I want to be that mom. The one who's kid will only eat white foods. The one whose kid is growing out of their shoes so fast that they can actually hear the cash register at Foot Locker ringing in their head.
The mom whose kid throws fits in the super market because they can't have that box of  Kix because we have a whole box of Trader Joe's Gorilla Munch in the house already.

I want to be that mom, whose kid is so shy that they will only do the Koala bear cling to my legs when we run into an old friend on the street.

I want to be that mom that has to work at keeping up with their kid, shouting a loud "Simon, STOP!" as they head off toward the edge of the sidewalk.

I want to be that mom. Today I really want to be that mom.

I want to be the mom that got to work off her baby weight and was so frustrated that those last 5 pounds just wouldn't come off.  I would take that in a fucking heart beat instead of being the new mom sitting in the hospital chair for 15 hours a day holding her months old baby and wondering how she could reach the Peanut M&M's that were in her bag on the floor so that she didn't starve but didn't wake her son who's resting heart rate just dropped below 100 for the first time in weeks .

I want to be that mom that had to pump her breast milk at work while staring at a picture of her kid for 'let down'.

I want to be that mom that didn't stop offering the boob until her kid finally had to say "I'm done Mother, now can you please let me finish my algebra homework."

Three years ago today I stopped getting to even think about not being that mom. Three years ago today I woke up knowing that I was never going to get to be that mom because yesterday, in the late afternoon, after a 'funny' start to the day, my son was diagnosed with a chronic and possibly fatal heart condition.

This was the first day of me being this mom.
The one that savors each day.
Each breath.
Lives and laughs with greater appreciation for living and laughing.
Is so thankful for the outstanding little man that makes it so much easier than it could be.
Feels the presence of the divine so much more.
And understands the power of family, friends, and community on a cellular level.

And more evolved shit like that.

Today...I kinda just want to say Fuck Her. Fuck that 'unlearning' the grass is always greener shit. It is. Sometime the grass really is greener and doesn't need as much mowing or weeding or all natural for your child/pet fertilizer.

Today I would be that mom. I would.

In

a

fucking

heart beat.





And oh yeah, it was amazing to celebrate yesterday and how far we've come. Blah Blah Blah. Fuckity fuck fucking evolved shit gratitude and all that.

3rd Anniversary

Today marked the third anniversary of Simon getting sick.  On this day 3 years ago, Simon was diagnosed and admitted to the hospital and the next day was on life support.  It's hard to wrap my brain around it.  How could it be that long ago and how could it have only been three years ago?

For me (Jaime), today felt pretty...average. I think that's saying a lot.  I didn't have random crying, big feelings, acute memories of the hospital.  It was more hustle bustle to get our cupcakes together so we could go to there to say thank you to the ICU staff.

It's a little staggering to think how much we've adjusted in 3 years.

Simon got to say hi to some old friends, including his primary evening nurse, Carol.  They were thrilled to see him and he charmed them all, as is his way.

Mama, Simon and Carol

Reunited and it feels so good (definitely better than when we were inpatient!)

Mommy, Simon and Carol

 Simon with his "scuba mask" on his head aka the face masks they give out in the ICU to keep cooties from spreading, that he requested.  

If I never see one of those damn masks after our need for them last winter when we were in for pneumonia, it will be too soon.  Simon, however, was loving them.  Here he is maxin' and relaxin' in an infusion chair in the hallway. We practically bathed him in Lysol when we got home.     

It was a very sweet, very mellow, uneventful, non-traumatic day marking the hardest day of our lives.  Just the way I like it.