A Bright Day for my Superhero.

 It's been a whirlwind of a few months.  Anastasia started her Remicade treatments at the end of March and it seemed to be working well, until we got to her dose that was 8 weeks apart. Then I noticed a regression.  

Guess what...according to her bloodwork she had no trace of the medication left.  So her next dose will be upped.  She is starting to lose her hair again.  Which means after 3 years we are going back to dermatology.  It was a fight to get an appointment but thanks to Dr. B they fit her in.

But this is going to be a happy post, Yesterday we all took a trip to the new Legoland theme park that just opened up in Goshen.  The best thing is that we totally surprised her!  

I had bought our tickets last month, got a bit of a discount thanks to Hallmark perks, but I didn't tell her at all.  The main reason is if I told her when we were going I would have heard her counting down or not sleeping until we went.

My plan to keep it a secret was simple.  I lied and told her we had a fun day planned with my friend Amanda and her son (sorry Amanda lol).  When we turned in she goes um...why are we turning into Legoland?  I was like oh we're at Legoland?  She says yes and Alex and I go, well we aren't meeting up with my friend we are going to Legoland!   

She was so happy!  We had a blast!

And yes it is a theme park so it is expensive but it honestly was worth it to have my daughter be able to be an excited kid for a day instead of having to worry about all the medical crap going on in her life. 

Tired of Waiting, but I will Wait Anyway

 3 weeks ago we got the bad news that Humira is not the answer to Anastasia's GI problems.  She is such a unique girl that her body is rejecting it.  So now we had to make the decision to start her on Remicade.  

The first step of this process was to see if she needed anymore bloodwork, she did.  So we took care of that on Monday.  Now we just wait to see if insurance will approve it.

Then more waiting.  Once we start treatment she will have a 2 hr infusion.  Then 2 weeks later another.  After that we wait 4 more weeks for another, then after that she ideally will have infusions every 8 weeks.  I pray it works.  I am tired of this issue.  I am tired of my child feeling so sick because her body is not right.

The only thing that makes me okay with starting this treatment is that Ana told Alex and I point blank (when asked) that she knew Humira wasn't making her better.

So now I ask anyone who reads this just say a prayer or send us positive thoughts, karma, or pixie dust (or whatever you believe in).

Ana has been through so much in her almost 9 years of life, I just want her to be well.

Candle Candle Burning Bright...

For those of you who read this and went to Wappingers  UMC you will remember this was one of the advent songs we sang during Pastor Dorsey's time with us.  It's now in my head the way Ana at 2 or 3 used to sing it.

Anyway yesterday started the season of Advent.  Every year I always look forward to this season of preparation especially the lighting of the Advent wreath.  Back when we used to go to the Presbyterian church I barely remember that the children of the church got to come forward as our pastor lit the candles.  When we started going to Wappinger UMC the candles were lit by different families during the season.  As the years progressed and our numbers dwindled it was the faithful remnant that lit the candles each week.

So imagine my surprise that in our new church home Jenn & I were asked to light the 1st candle.  I mean honestly our new church family I never imagined that they would have us new comers start off the season of advent.  But lo and behold we were asked and we did.  

There were some kinks, we didn't get the reading until about 15 minutes before our service started, and Anastasia couldn't decide whether or not she wanted to come up or not (she didn't but was a good girl alone in the pew), but all in all it was a nice experience.  And maybe now people will actually know my name instead of being called Jenn's sister or Anastasia's mom lol.

Am I doing too much or Not Enough?

 It's almost back to school time.  For 1 month we are officially doing remote learning.  Who knows what October will bring.  This district would like to phase the students back in for a hybrid model (2 days in school 3 remote learning).  I pray that this will happen.  Ana regressed socially during the end of the school year and unfortunately I did not catch it until she went to camp last month.

But anyway, our school supplies are purchased, we have a schedule for schooling and I have been on multiple school district online presentations for the  upcoming academic year.  I even took pretty detailed notes on the presentation this past week and shared them with our school PTA group.

But I worry, will I be enough this year?  Instead of being unemployed I'm working.  The first month I asked to close so that I can get Ana adjusted to remote learning.  I pray she succeeds, she is so very smart but so unmotivated.  The unknowns are scsry and I just wanted to vent, and since I haven't blogged in over a month I thought this was a good place to do just that...

A whirlwind of a weekend

It's been a crazy few days for me.  I started back to work a week ago Friday, helping get ornaments situated as we were planning on having a strange premiere event.  All that changed Wednesday That was when Gov. Cuomo announced that if proper hvac systems were in place malls could open.  I guess my mall did because next thing I know my boss is calling me and telling me we are opening Friday.  The next 48 hours my co-workers and I worked out butts off to ensure the store would be ready.

Cut to another busy day Saturday.  It was the long dreaded "celebration" of merger between UMC of Wappingers and Poughkeepsie UMC.  I put celebration in quotes because honestly I don't feel like I was celebrating it.  I am saddened that my childhood church is now closed and although we have a good pastor and welcoming congregation at Poughkeepsie it doesn't feel like home.  It's also hard to explain to Ana what happened and why we can't worship there anymore.  She is sad as it's the only church she has known.

Even today 2 days later she is still saying she is sad and it's not fair that the church had to close.  I hope it gets easier for her.  I hate that she is somsad about it.  I am however grateful for our new pastor Pastor Jody, who tried to make her feel welcome yesterday at service.  It's one thingnto make me feel welcome, it impresses me more when you do it for my child.

Anywhoo I'm hoping things slow a bit because after working 6 days straight (which I haven't done in 4 months) I am wiped!!!

(I Finally was in) The Room Where it Happens (Sorta)

For those of you who know me you will know that since 2016 I have been obsessed with Lin-Mnuel Miranda and Hamilton.  I got the cast album shortly after I saw the performance the cast did at the White House (it was lost when my car was totalled last year :( ) .  I have watched every behind the scenes clip I could and I was totally hyped for October 2021 when the filmed version was going to be released into theaters (I was even planning on going by myself lol)

So when Lin-Manuel Miranda announced he was releasing the filmed production early I was beyond excited!  July 3rd was now called Hamilton Day in my head.  The film was going to be released at 3 am (12 am PST).  I told myself I was not going to be up at that time (and tried not to be since I had to work that morning...my first official day back since March 16th).

Well my internal clock had other ideas.  At 3:06 I woke up.  And well I put my ear buds in and started.  If you've known me for a while you know that if I know a song I will absent-mindedly sing along.  Well I was kinda doing it, but silently.  I got through Act 1 and then went back to bed.  As much as I wanted to continue I knew I couldn't.

My initial take aways...

Amazing, the cast was wonderful in their roles.  I love people who use their face to express themselves.  I laughed so much at the King George bits.  Jonathan Groff's facial expressions are EVERYTHING!!!

Leslie Odom Jr. is amazing!  One of my favorite songs is Wait For It, his voice was perfect in that song.

The things that were hidden from the cast album were great.  Spoiler alert-you hear about John Laurens death at the end of Dear Theodosia-something that is not revealed when you hear the music.

Act 2 (watched later Friday Night) left me a blubbering mess.  From Phillipa Soo' heartwrenching song Burn, to watching Renee Elise Goldsberry become an alternate narrator in It's Quiet Uptown (a song I tend to quote when someone has passed on), to the very end when Eliza says how she has carried on the legacy of her husband and those important to him.

It was amazing and yes its the BEST seat in the house.  I am so glad I have Disney+ just so I can watch it over and over again!

My Chorus Family

During this time of anxiety and not knowing what comes next I have a source of consistency.  It is my chorus life.  Though our rehearsals are quite different than they were in February, our weekly Zoom meetings provide me with some sense of normalcy in this crazy time.

I found Evergreen in the spring of 2003 through a church choir member. I was not married, in fact I had only been dating my now husband for 6 months.  It was the first time that I was recognized for singing away from my sister.  I was hooked!  I did a singing lesson program in May and June, and in July I auditioned and passed.

Over the years the women in my chorus became extended family.  A chorus quartet provides music for my wedding in 2007, in 2012 before Ana was born many members visited me in the hospital.  They were very worried that I overdid it the week prior at Regional contest.  Through Ana's various health crisis' they were there for me.  They provided support via emails, facebook mesaages etc.  

My chorus is a way for me to get away and express myself in song and not worry about what's going on in the world around me.  

I got to experience going to International Competition with them in 2017 in Las Vegas, webplaced 3rd  out of 5 small choruses. Outside of my wedding day and the birth of Anastasia it was one of the most memorable experiences of my life.  One that I will hold dear to me for the rest of my life.  

They are the family I didn't know I needed, until all the bad stuff happened.  They have been there through it all good and bad.  I am forever thankful for Karen the choir member who introduced me to them.

Now here's my plug, if you sing and want to see what we are all about our website is http://www.evergreenchorus.org.  Please check us out and if you feel led join us for a rehearsal (when we start having them live again).  We love new faces!