Chocolate Is My Water Today

I just texted my friend that title, "chocolate is my water today" and then I thought that would be a great blog post for what I'm feeling about today.

Today is a weird day.  I'm home with Abigail who has strep for the second time in two weeks.  She's still in her jammies and I'm still in my cleaning clothes.  Gosh, I hope no one rings the doorbell.

Anna is in school going straight to Inter-El and it's not my turn for the carpool (I'm still getting used that that word and actually carpooling) so I'm actually home the whole day.  Car in the garage going no where.  It's on a day like this that I realize just home much driving around I do.

Like yesterday for example.  Drive them to school.  Drive to the grocery store.  Drive back to school because one is sick.  Drive to school for the third time because the school day is over.  Drive to viola lessons.  Drive home.  Drive the town wide art show because she has her art work on display and today is the opening gala.  Drive home.  Drive to orchestra.  Drive to the pediatrition.  Drive home.  Today my keys are happy to take a nap.

Insert I lost my train of thought and forgot where this post was going.

Last night Scott and I stayed up late.  We got the biopsy results back and they were shocking, disappointing, and down right crummy.   I've cried a bit, got mad a bit and prayed on my knees that God would turn this into something wonderful.  We have two daughters that both have problems we can't fix.  We can't take them away.  But we can give them to the One who knows and he can turn them around for good.  We believe and hang on to his promises.

This song Scott made me listen to today.  It's perfect.  I'll take another step.  And another step.  And another step. And even though my steps feel weak He is strong.  I can feel His strength.  We walk by faith and not by sight.  We trust God and take another step.



And have some chocolate.

Chocolate Cafe

On Saturday Anna had the amazing opportunity to play (along with her Inter-Elementary orchestra) with Solisti.  Solisti is the best of the best in our town.  They are a select group of students that tried out from our two high schools in town.  It is actually a very competitive audition process.  They are a nationally and internationally recognized orchestra playing at such places as Carnegie Hall, Westminster Cathedral in London, in Ireland for the Lord Mayor of Dublin, in Austria, and in Italy at the birthplace of Stradivarius.  And let me tell you... just one note in and my mouth hung open.  They were such a treat to hear.

 (oh man I wish I took a picture of Solisti or even the beautiful banner announcing the concert that was hanging in our town green) (How many pictures can I have of Anna wearing a white blouse and a black skirt?)  (oh and more little thing... sneakers on that little girl next to Anna... really?  The high schoolers in Solisti wore a tuxedo and the girls long black flowing dresses.  And even the one behind Anna... black leggings?  For real?) 



And even more of a treat was to see my little girl go up with her viola and join them.  My heart flutters.  Right in front of Anna is the Superintendent of our schools.  Good thing Anna doesn't know :)



It's moments like this though few and far between that make every lesson, group class, concert, rehearsal, and practice at home worth it.



And yes, there was chocolate there.  I brought all kinds of special chocolate baked goods for Abigail but when she saw this cake she wanted it.  So I took a picture of it, went home and that night we all had it for dessert.





I love window light (and little sisters)







I'm so proud of you Anna. You do things I can't imagine doing at your age and your viola sings to my heart. xo mommy

Good Things

I'm glad it's Monday. Really glad. A day of to dos and a time schedule to follow. Activities and dinner prep, cleaning and laundry. Normal has never felt so good! I was so down in the dumps when I wrote my last post I forgot to tell you the good things about her Endoscopy day. And they are...

10. They almost literally roll out the red carpet for us at this children's hospital. Everyone knows us and that feels good.

9. We got Dr. Epstein... the best anaesthesiologist. Although by now we are on a first name basis with him. Abigail calls him Mike. I keep correcting her and telling her to call him at least Dr. Mike.

8. She was sooo brave. Although she doesn't have to be she is. Not a tear this time with her IV going in.




7. She old enough to understand and I can talk her through it; not like when she was a baby.

6. We had the 6:30 am time frame and we were first... that's always good since she hasn't eaten since dinner the night before.

5. We had Eileen the nurse for recovery. She's sweet and lets Abigail sleep as long as she wants to wake up in recovery.

4. Nurse Eileen gave her an hallmark read along book and stuffed bunny named 'abigail'. She already had it but waking up she didn't know what was going on and though it was ammmmmazing!

3. Daddy made it in time to be the first thing she saw when she opened her eyes as always.



2. And this nurse... our absolute favorite... I gasped when she walked in and told us she was assigned to us for the IV. She's the best ever. Abigail actually asked me to take a picture of the two of them together.  She covers Abigail with a warmed blanket and puts the numbing cream on her IV arm without the band aid that hurts when it's peeled off.  She covers it with gauze and then a washcloth so Abigail doesn't have to look at it.



1. And the best part is that for now... it's over!

Update

Dear Friends,

Thank you for your comments, your thoughts, your prayers.  Today was a bad day.  And tonight was even worse.

 Maybe it's because I know that there are situations in life that are far harder than what I faced today.  I know that parents all around the world and in the same hospital we were in this morning  are walking through the unbearable.  I think that's what makes it so hard for me.  I want to have an okay attitude but emotional exhaustion all afternoon and an evening with Scott having to be at his school for 'family dance night' left me weak in all the ways I want to be strong.

Every little thing bothered me.  I was beyond grouchy and the girls, especially Anna felt it.  When I tucked her in I explained about the day, bad results, and why mommy has been acting this way all night she sobbed.  I mean, sobbed and sobbed and sobbed.  I think that most of her tears came from a place of exhaustion herself.  She feels it big on Friday nights.  The end of the week comes crashing down and she can't process her thoughts any other way.  So often her tears come out on Friday nights.

I don't want to complain but I'm tired of walking this path.  I'm tired of feeling and knowing that things can be far worse and that I can not only handle this but that I can handle this in His strength and with His grace.  But tonight I want to sob like Anna did.  Mad like she was that test results couldn't be what we want them to be.  I just want today over.  I want to wake up and just be the way it always is.  EoE and all.  A day when I can push it back and not think about this journey.

Thank you for letting me be so honest here.  Tomorrow will be a better day...

"You, O Lord, are a shield around me;
you are my glory, the one who holds my head high.
I cried out to the Lord,
and he answered me..." Psalm 3: 3,4

It's No Big Deal

Tomorrow Abigail and I head to the hospital for her twelth endoscopy.  It's no big deal. MUSIC (just because I like this song today) 

Except for the tightening in my throat.

On my to do list today was 'organize Abigail's notebook'.  I started a notebook for each of my girls when they were born.  A place to write questions before a yearly well visit.  As well as a place to take notes. Abigail's is filled to the brim.  (funny how some people worried about the health of a baby from China because she wasn't born from me.  That Chinese baby as a notebook that is mostly empty and her 'born from me sister' has one that is over flowing with health concerns) But it's no big deal.



Except for the fact that it's not exactly normal to to have pages and pages of scribbled notes like these.



But I do have sweet drawings from a little girl Anna.  These notebooks often kept her busty when we sat in doctors offices for her baby sister.  I remember being upset that I forgot her 'fun bag' and I had to let her draw in Abigail's health notebook.  Now of course they're little treasures tucked into the ugliness of EoE.  But it's no big deal.



And Abigail started drawing her her notebook too


Hooray for five! 


When I typed out the summary of her disease I had to go back through her notebook and all of my old calendars to get the dates right.  It was good to do.  Patterns noticed, a quick page to look and see what we were testing for at each endoscopy.  One little typed page looks so neat and simple.  But each line was filled with many doctors visits, hospital check ins and so much.  It felt good to get it all ready for tomorrow.  So we leave the house at 6am.  She'll walk in this time holding my hand.  I wish she was still little enough for me to carry her in jammies to the check in.  I'm sure she wishes that too.  This time she knows the 'drill'; knows about the IV and asked to be put to sleep before the IV goes in.  I can't grant her that but it's no big deal.

sad for me that the only 'positive' meaning good endoscopies are the ones highlighted.  All of the others were bad. 


Except that it is.  From 6 am until 11 am I'm on.  In a way that leaves me so exhausted I'm good for nothing the rest of the day.  Truly, really, so tired that I take a nap with her, do puzzles, and color.  Laundry waits for another day.  Photos wait for another day.  Even answering the phone can wait for another day.  It's no big deal...

... but I want it done.  Tomorrow behind us.  And the good news is... it will be.

First Grade Rocks!

So last weeks theme for my photography workshop was connection.  I immediately thought of this shirt.  It was still in the box.  When I saw it online I thought of school photo session right away but since I'm not a bling on the shirt kind of mom I still had it tucked it away.  And then this assignment came up.  I knew just what I wanted to do!  Abigial's teacher so graciously let me into the classroom for a few minutes after dismissal last Friday.  I didn't want to take up much of her precious weekend time so I worked quickly.  I told Abigail to climb up on her desk, "like sit on my DESK?" and that was it.  She put on her rock face and these are my favorites.

Oh man!


So glad I have this image!


At the end I asked her teacher to jump in a few.  It was wear words on your shirt day (perfect for Abigail) and Read Across America / Dr. Seuss's birthday day.

I love that she loves her teacher.  May she always have a two handed hug, cheek to cheek kind of teacher... forever and always... 


And it's a wrap!  Think she'll let me do this every year?

Nothing Makes Us Laugh More

music



'taking a shower'



'musical chairs'





reading her card and laughing (and guess what?  she can actually read the card and most of the time she doesn't need help figuring out what the word is... so much fun our little reader is)



'polar bear'



and oh, I forget this one...