Flying to Springfield

It's not like we flew to Springfield. We flew to New York. But there are 26 different cities or towns named Springfield (Franklin is # 1 but I wasn't a fan of the alliteration) so it's as though we could have been going anywhere.

We flew to New York though and it was almost like we were any family going to New York. I say almost because we're a lesbian family with a 2.5 year old. A two and a half year old with a feeding pump and food bag and medications but other than that we're just like any other family.

Or, at least it felt like it.

Now, when I say that I want you, dear reader, to understand that I have not felt like any other family for at least two years. Two years of feeling like we are that family.

The one that you never think about but, should you see them on the street/in the park/ at a restaurant, you can't quite keep yourself from stealing glances and wonder 'what is that tubing and bag', 'why does she have a syringe', 'I wonder what he has', and hopefully 'we are so blessed to be healthy, I promise not to take it for granted'.

And Simon doesn't even look sick anymore but that's how it feels sometimes when were out and doing a feed, giving a med, cleaning up vomit or I have to ask about someone's sneezing or coughing etc.

But since barfing has stopped (and it really has!) I can't even begin to say how it's felt to walk through a day. What's funny is that it's not like any of those other things have really stopped. Simon is still tube fed, he still gets hooked up to his pump while we're out and takes a number of medications throughout the day but hot damn if the no barfing makes all of that so benign.

I think there's something about his throwing up that was an acute reminder of how sick he is. Taking medication and even administering his meds are not unpleasant. We've all done those things in our lifetime. Likely we're not doing them for some great reason but in of themselves those actions are not unpleasant or painful. Even hooking him up to his enteral feed is not in of itself an unpleasant thing. It's probably not delightful but neither is brushing teeth and yet we do it.

Throwing up however is always unpleasant. It's gross. It's awful. It's messy. It's smells bad and often means a clothing change and funny looks or comments if we're out in public. It was a several times a day reminder that Simon is sick. He is so sick that he can't even keep down food, something we all take for granted but was his norm.

It's not anymore.

So we flew to New York. We had fun on the airplane. We walked up and down the aisle with Simon greeting people with a "Hello Passengers!", waiting for eye contact before moving on down the aisle. We met the pilots and got to sit in the driver seat of a 747! We learned how to say "Thank You Flight Attendant" and of course go all bug eyed (but not upset) at takeoff and landing.

We got on East coast time.

We rode the city bus and subway. We sat at restaurant after restaurant. We played with calamari and decaf cappuccino. We met and charmed people that have been praying for our family for two years. We saw long lost friends, favorite grand uncles, Laura's camp people (Polly I still can't believe that you drove down from Boston for 1 night!), saw an east coast Autumn and even got to ride a horse named Neil ("walk on Neil" is still a favorite phrase).

We laughed a lot.

A lot.

We gave lots and lots of love to MM and PopPop, and we surprised Mommy and Mama over and over again with how much we are alive and present and determined to have fabulous days no matter how much newness we have thrown at us.

He was a dream! It was a dream week. We had Jaime around the whole week. We had MM and PopPop. We had a fabulous time. ( I really like the 4 to one ratio.)

We've been home for almost two weeks now and our days are different. There's still OT and Speech therapy and Feeding therapy and our Early Intervention program and medication refills and doctors and case managers. There's still a lot of time that's just Simon and I, pump bags, and meds. There's all that stuff.

But with no barfing and crazy development happening all over the place....it feels different. Hard but different.

 

How can you begrudge a 2.5 year old going through their "NO" phase when everywhere else you are wanting them to experience what's normal/typical.

He's deep into it starting three days ago.

 

I'm screwed.  
 

Here are some pics from NYC 

Getting ready for take off

Can you believe they let me fly this thing

Who let these jokers into the cockpit?

PopPop and MM meet us at the airport

Riverside park meet up with High School and Camp Friends

Maeve gets a ride with Simon

At the Bronx Zoo it's ok to feed the goats fingers

MM working out her biceps

Strolling is nice too

NYPD recruiting

 Mama and Simon stroll the botanical gardens

Simon stops to smell the flowers

Simon explains the meaning of life to PopPop

At the edible herb garden

At the edible table at Emilia's in the Bronx's Little Italy (calamari)

Decaf cappuccino

With Jaime's 'niece' and the wall of Simon in the background (in MM and PopPop's bedroom)

Simon meet Neil

Simon ride Neil

Simon love Neil

Getting ready for the Fall harvest

Meeting Jarrett at the Metropolitan Opera

With PopPop at his place of work

"Ok people, let's run this through again"

"I'm almost ready for my close up"

Two bundles of NY beauty

Simon and Polly have a moment

With Tessa on our last night.

And that's how we did NYC!!