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