Sunday, December 14, 2014

Our Current Favorite Book



...and I would choose her over and over and over again.  





Friday, December 5, 2014

A Love Story And A Legacy

My mom had two sets of parents, did you know?

It's a much longer story than I'll write tonight, but here is what you need to know for the story I am going to write tonight:

My mom had a loving father and mother - they were in a car accident and my mom's mother died.
My mom was just 15 months old.
My mom's father remarried - he married his first wife's sister.
Before my mom's mother was killed she said to her sister-in-law "If anything happens to me while we're gone I want you to raise Valerie."

My mom was raised by her aunt and her uncle, and remained close to her family.

It's a beautiful story of love and sacrifice and in the end it resulted in my mom having three loving mothers, and two doting fathers.

The two families lived in the same town and were close to each other and to their friends.
My grandparents had two friends, sisters.  I met one of the sisters and grew to love her over the years.
The mother who raised my mom had Alzheimer's in her last years, and stopped speaking.  On occasion she would call out one name: Euleda.  Euleda was one of the two sisters my grandparents were friends with.  Euleda named one of her daughters after my mom's mother who passed away.

That's how close they were.

My grandpas had a mutual friend named Van.  Van, my grandparents, and the two sisters all lived in the same town before they were each married, dated each other even, and remained friends their entire lives.

Van eventually married the other of the two sisters: Audrey.

It was shortly after Jason and I got engaged that I wrote this on my blog:

"I imagine this scene in heaven:

One day my grandpa would have said to his brother-in-law (my other grandpa) 'Gayle, what are we going to do with our granddaughter?  We have to find a way to help her out.  She's old and she needs to get married.'  And my grandpas probably would have had no clue how to help me.

After a few minutes of talking about it Van would have joined his two friends.

My Grandpa Gayle - who was very astute - would have noticed that Van looked distraught.

'Van,' he would have asked, 'what troubles you?'

And Van would have said, "I have this grandson that I'm worried about.  He has a lovely fireplace and no one to build a fire for.'

And the three grandpas would have sighed...and then in unison they probably would have had a moment of clarity.

Someday I'd like to know how long our three grandpas have been plotting - and I would like to give them all a really big hug."

Van and Audrey, my grandparents' greatest friends, are Jason's grandparents.

And the minute I met Audrey I felt a kinship with her - a connection that went beyond the fact that she was my then fiancee's grandma.

My grandparents were my favorite people - they had my entire heart - and meeting their dear friend put her in the same place in my heart.

Our roots were connected long before Jason and I met.
Today we took Audrey home to the place those roots were first planted, and we laid her to rest next to her husband.

As I stood in that cemetery and thought about my own beloved grandparents who where were laid to rest just a few miles north of Audrey and Van, I felt peace.  And in my mind I whispered to all of them that I loved them.

Those seven people - those grandparents we've loved and honored - they've left us a beautiful legacy, and until we meet them again, Jason and I will do all that we can to continue that legacy.








Wednesday, December 3, 2014

The X-Ray Technicians Are Going To Know Us By Name

I'm currently bingeing on Hershey's cookies & mint nuggets.
I wish I could say that carrots did the same thing for me.
They don't.
Ironically, chocolate is not my first choice.
But these nuggets?
I'm their biggest fan.

Let's talk about why I'm bingeing shall we?

Wasn't it just two or three blog posts ago that I was telling you about Em's hip fracture that ended up not being a fracture?
Tonight she fractured her elbow.
She fell off a bed.

I was at work when it happened and I knew something was wrong as soon as I heard Jason's voice.
Em cried and cried ... and cried ... until she had cried herself to sleep.
She cried whenever we moved her and during the x-rays.

The radiologist called the pediatrician with the x-ray results before we had even left the x-ray room.
And now tomorrow I have to find a pediatric orthopedic specialist who will cast her elbow on extremely short notice.

Most pediatric specialists only work on certain days, but the certain day they work this week is the day of Jason's grandma's funeral and the on call pediatrician told me Em can't stay in her splint until next Wednesday when the specialists work next.

For the love...





Em is currently sleeping peacefully, thanks to Tylenol.
Jason is playing basketball with the guys to relieve the yuck that he feels from the day.
And like I said, I'm eating chocolate.

So goes our life.

Oh..and one more thing...I'm giving Instagram a try.  Feel free to follow along @elimysmommy.


Monday, December 1, 2014

Any Day Can Be Thanksgiving

I'm craving apple pie.
I have a slice in the fridge and I'm waiting...waiting until I can't stand it any longer...because once I eat it it's gone...until next Thanksgiving.
...or until I ask my mom to make me some more.

We didn't celebrate Thanksgiving until Sunday afternoon and it was lovely.
Except that I put out unsalted butter on the table and we nearly had a revolt.
I had no idea that you could taste a difference but apparently you can.

What is that they say about learning something new every day?

Anyway, I took one picture of the feast - it was of the kids.  And every single one of them took my phone afterwards and complained about what they looked like or about what they were doing.



Like Nick, there in the front with the yellow shirt.
"But Noelle!  I was taking a drink!"
"Nick dear, I counted to three.  Your old enough to know that on three I'm going to take the picture."

And Allie...she's covering her mouth because she was currently chewing something and couldn't smile.

I'm not sure why Erika there in the back has her hand raised.
And I love that Emily is there sitting there like she belongs.
You might notice that she's sitting at the table with a roll in front of her.
She carries bread with her during every meal - she doesn't eat it, just carries it.

* * *

I'm currently distracted by the last episode of the Amazing Race.  Stand by.
Okay, my team is still in.  I Googled it to see how it ended so that I could watch in peace.
Jason laughs at me about that particular trait I have...not being able to handle surprise.

* * *

Anyway, back to Thanksgiving.
We have much to be grateful for and family is at the top of that list.

Jason's grandma passed away Saturday night and our hearts are especially tender as we think of her and of her legacy.

And of course our hearts are always full of gratitude for our little girl.  Oh how we love her.
Thanks to all of you for being in our corner.




Monday, November 17, 2014

The Conclusion

So much for my resolution to write every day this month...

Last you knew, Emily likely had a fractured hip.
We met with a pediatric orthopedic surgeon and after looking over the x-rays he told us that Em did not have a fracture...he couldn't see anything wrong with her hip.

"Maybe she sprained it," he said.

And then, as almost a side note he said, "You might want to watch her for signs of leukemia, but from an orthopedic standpoint she's fine."

Right.
Watch her for signs of leukemia.

I called the pediatrician that same morning and told her about the appointment.
She said to me, "I'm ordering blood work now.  She doesn't show any signs of leukemia, but let's just take this off the table."

And so within just a couple of hours of the appointment with the orthopedic surgeon Em and I made our way to the hospital to get blood drawn.

That little girl was such a trooper.  She was nervous but we sang the ABC song through once and by the time we finished the song the nurse was done with taking her blood.

The nurses loved Em's rendition of the ABC's and commented on how cute she was.

Thankfully, the pediatrician called me back that afternoon with the results ... Em's blood work was clear.

To be honest, I was worried for a little while.
I spend part of my life just waiting for the other shoe to drop, and I was really worried that leukemia would be that other shoe.

It's not rational, I know, but given Emily's history, I don't know how to turn that part of my brain off.
I think it was the next day when I finally sat down for a few minutes and just cried.

Emily continued to limp until just a few days ago.

She's now got a miserable cold and we've had to keep her home from school, but in spite of not feeling well she's her happy self.

Thanks to all of you who checked in on the little miss ... we so appreciate your love and concern!





Tuesday, November 4, 2014

If It's Not One Thing It's Another

Emily started limping on Sunday and we had no idea why. She didn't act like she was in pain other than the limp. I took her to the pediatrician yesterday for a flu shot and mentioned the limp. The pediatrician watched her walk and after a few minutes said, "I'm going to order an x-ray."

They took x-rays of both of her legs, from her hips to her feet. I should have had the results this morning but didn't hear back from the doctor until this afternoon.

Two different radiologists looked at the x-rays and both of them came up with the same tentative conclusion: there is a spot on Em's left hip and their best guess is that Em's hip is fractured. They have a hard time believing their answer though because Em shows no signs of pain other than the limp, and has not been injured.

The pediatrician is personally calling a pediatric orthopedic surgeon to schedule an emergency appointment and to get his opinion on the x-rays. I will hear back tomorrow from the pediatrician about that conversation.
The pediatrician ended the conversation with this: "If it's not a fracture, it's something, and we'll figure out what our next option is. Just sit tight until you hear back from me."

Emily does not need another something in her life. She really doesn't.

Saturday, November 1, 2014

What Halloween Looked Like


My beautiful girl ... 

...who just happened to love everything about Halloween, especially the trick or treating.

(Ironic because she won't eat the candy.  She loved smelling it though.  At one point last night she was sitting on the floor with her head in her candy bag just absorbing the smells of the chocolate.)




If you ever wanted to meet the Scrooge of Halloween all you would need to do is say hi to me.
I'm not a fan of the holiday.
It's cute ... until it's not.

Here's an example.

We went trick-or-treating with my sister-in-law and her three kids.
Her youngest is a girl, just a few weeks younger than Emily.

We were in my sister-in-law's neighborhood and someone there does a haunted garage every year.
It's quite the attraction, and at times there is a line to get in.

My nephews wanted to go and so Amber (my sis-in-law) took her boys while Jason and I stayed outside with the girls.

My niece was already nervous about her mom not being there, and she was crying a little bit because it was dark, there was loud spooky music, and in front of the home with the haunted garage there were people dressed as creepy cats ... or something.

There were about seven or eight of them and they slinked around, doing a pretty great job of creating a feeling of unease, even for me.

We were at least one house away from them and they started towards us.  My niece cried and clung to me saying, "they're coming closer Noelle...I don't like them at all."

When they got to us my niece was terrorized.

I got mad and said to the cats," Seriously?  Why do you think we're this far back from that house?  Can you not see what you're doing to this little girl?  Get the heck out of here."

I turned my niece away from them and said again for good measure, "GET OUT OF HERE!"

They slinked away and we walked further down the street to wait for Amber and her boys.
Emily didn't seem to be bothered by them, thankfully, but it took my sweet little niece several minutes to calm down.

One of these days I'm going to start a petition to ban the celebration of Halloween by anyone over the age of 12.  

Or not.





Thursday, October 30, 2014

I Had To Blow The Dust Off Of My Laptop

Twas the night before Halloween and all through the house Emily was sleeping...
Jason and I aren't sleeping though.
Jason is messing with his computer, which is pretty much standard operating procedure for him, and I've been reading.
It's like my kindle is glued to my hand.
It's feast or famine with me - I never read or I read so much I'm going to have to create a monthly budget just for books.

I've made a New Year's resolution.  It's taken me a few months to settle on what I wanted to resolute (I might have just made that up...that 'wanted to resolute' bit) ... I'm going to write a post every single day in November.  And maybe by the end of the month, I'll have gotten back into the habit of writing.

I feel like blogging is mostly outdated.  Maybe?  But I need to be better at keeping an account of my life.

The biggest thing that's happened in our world is that our little girl, who is far too quickly growing up, is finally saying some words ... words that others besides just Jason and I can understand.  (Okay, so far it's only two words but still.)

Em played with her cousins the other night so that Jason and I could go to a movie and one of my nephews said to my sister-in-law, "I didn't know Em could talk!"

To see her purposefully drop something and then hear her say, "Oh no" is about as cute as it gets.

Okay, Jason is telling me it's time to watch the most recent episode of Madame Secretary and because I love that show I'm going to go and make me some hot chocolate and curl up next to that husband of mine.





Monday, September 22, 2014

You Know It's Bad When Search and Rescue Gets Involved

Jason was backpacking last week.
He went to the Wind Rivers in Wyoming.
It's rugged terrain and they didn't have a trail to follow.
Jason has hiked these mountains before but the route they took this time was new to Jason and the guys he was with.



Of the four guys that went, there was one who always lagged behind.
Jason and the other three would stop often and wait for him to catch up.
On the second day of their trip the same guy fell behind and after waiting for nearly three hours, Jason and his friends knew that something had gone wrong.

They spent the rest of that afternoon looking for him and calling his name over and over again with no luck.
A storm was coming in and they knew they had to set up camp for the night.
By 1:30 that morning Jason was standing outside of his tent in a full on blizzard, repositioning the tent so that the 60-70 mile winds wouldn't be blowing right at it.

The lost hiker had his gear with him but Jason and the others didn't know if he had been hurt and they spent a mostly sleepless night.


The next day, they broke camp and headed back to where they parked their car.  They had 15 miles ahead of them and they hoped they would meet their lost friend somewhere along the way.

They didn't.

They debated on using Jason's personal locater beacon to get some help but decided against is as they knew that I would get a phone call verifying Jason's whereabouts and they didn't want me to worry.

When they finally reached their cars they drove to the sheriff's office and didn't find anyone there.
They next drove to the county jail and an officer there called the search and rescue team.
By this time it was nearing 11:00 at night and because there was nothing they could do in the dark, Jason and his friends got a hotel room for the night.

They didn't call their wives because they didn't have any real news about the lost hiker, and they didn't want their wives to worry.

Unknown to Jason was the fact that I was worrying.
I always worry when Jason leaves, especially when I don't have any contact with him.
It would seem my husband is fond of taking the road less traveled so to speak, and although he is extremely confident in his capabilities, I worry.

Friday night as I was getting ready for bed I had an overwhelming feeling that I needed to pray for Jason and his friends.
The feeling was strong enough that I started to cry.
I was certain that I would be getting a phone call telling me that Jason had been hurt or worse, and I prayed that entire night.

Saturday morning the search and rescue helicopter met Jason and the guys and started its search.
It flew around for two hours without seeing anyone.
The pilot landed the helicopter and the group was planning their next move when the lost hiker appeared on the trail.
He was uninjured and reluctant to admit that he had been lost.


The guys celebrated by going out for Mexican food before heading home.
The others made a pact not to tell their wives but thankfully as soon as Jason was home he told me what had happened.

We both got emotional as I told him of the feelings I had had about needing to pray for them.

I'm so grateful that this trip ended well.
If Jason didn't love backpacking so much, I would consider asking him to not do this again in the future.
But he will.
And I will worry.
And I'll always hug him a little tighter when he comes home.






Monday, September 15, 2014

I've Probably Never Really Talked About It

As I was looking through Facebook last night I came upon a link to a foundation set up in support of the 22q11 deletion syndrome or DiGeorge Syndrome ... the syndrome that Emily has.

I went to the webpage and read some of the profiles of the kids with the syndrome and was reminded quickly of why I am not part of any of the support groups.
Emily is three and I still have a hard time emotionally when it comes to her syndrome.

There are close to 150 different ways that her syndrome can affect her...and it can affect every part of her body.

Almost every single thing that Emily struggles with on a daily basis can be blamed on her syndrome.

Here's a list of the main symptoms:

  • 69 percent have palatal abnormalities (such as cleft lip and/or palate)
  • 30 percent have feeding difficulties
  • 80 percent have conotruncal heart defects (i.e., tetralogy of Fallot, interrupted aortic arch, ventricular septal defects, vascular rings)
  • 40 percent have hearing loss or abnormal ear exams
  • 30 percent have genitourinary anomalies (absent or malformed kidney)
  • 60 percent have hypocalcemia (low blood calcium levels)
  • 40 percent have microcephaly (small head)
  • 40 percent have mental retardation (usually borderline to mild)
  • IQs are generally in the 70 to 90 range
  • 33 percent of adults have psychiatric disorders (i.e., schizophrenia, bipolar disorder)
  • 2 percent have severe immunologic dysfunction (an immune system which does not work properly due to abnormal T-cells, causing frequent infections)
Emily has palatal abnormalities, feeding difficulties, two different heart defects, issues with her ears/hearing, low calcium levels, and has had a weak immune system. She has other issues too, that are not on this particular list.  As for the rest on this list...only time will tell.

* * *

I'm not even sure why I'm sharing this with you...maybe it's my own way of trying to accept that this is real and it's hard, and it's likely always going to be hard.

Maybe it's to point out that Emily handles her challenges far better than I handle her challenges.

Or maybe it's to remind myself to go easy...to be a little more patient...to be a little kinder...not to Emily but to myself.

It's a constant battle I deal with: I'm not doing enough to get her to eat, I'm obviously not disciplining her the right way because if I were she would not feel the need to hit her syringe of food out of our hands 8 out of the 10 times we feed her, I'm not working with her enough at home on her therapies...

The list goes on and on.

The reality is that Emily came to this world holding a bag filled with difficulties that would last her entire life ... and those difficulties have nothing to do with what I see as a lack on my part.  They're just part of who Em is.

I should print that last sentence in bold ink and hang it on my bathroom mirror.

* * *

Listen, I didn't just write all of that for you to validate me ... I really didn't ...
But next time you see a mom you feel like judging because her child isn't buckled properly in the grocery cart, or because her child is behaving like a crazy person, or because her child threw up the minute she got too much water in her mouth or because her house is a disaster ...  or whatever it is ... just stop and realize that they probably have more in their own bag of difficulties that we give them credit for.

* * *

And now I'm going to go and soak in a tub because my knees hurt because I knelt on a roof for two hours tonight pounding nails into tar paper because it's going to rain on Thursday and I love my brother and sister-in-law and don't want their house to be filled with water.











Monday, September 1, 2014

An Update on All Things Emily

World?

Our girl started preschool last week.
I'm not sure I ever even mentioned that she was going to preschool.

It was an emotional day.
Not for Emily but for me.
I cried the entire three hours she was at school.

She loved it.
She's only been twice but whenever we mention the word school she smiles such a big smile and nods her head yes over and over again.


She will benefit from the social interaction with the other kids, and as a bonus she qualified for one on one speech therapy during the time that she's in class.

When I picked her up on Friday her teacher asked me if Emily had ever tried chocolate milk.
I laughed a little bit and said no.

"Well she tried it today," the teacher said with a smile.
She didn't like it and she wouldn't take more than one sip but it's more than I've ever been able to accomplish.

Lately, Emily loves to have a portion of whatever we are eating on her own plate.
She carries it around with her and every few minutes she will smell it.
It's kind of adorable.

While we're on the subject of Emily I'll give you a quick rundown...

We recently met with her cardiologist.
They did an EKG and an echocardiogram.
Her echo showed that her heart is enlarging at a faster pace than the cardiologist expected at this point.
He's not overly concerned though, and we have six months before we'll take her back for another MRI of her heart.

We are meeting with a new feeding therapist.
After one meeting with her I knew that if we had been meeting with her all along Emily would be eating by now.
We actually saw her once when Emily was a baby, and I was impressed with her then, but the day after that initial appointment Emily was rushed to the hospital in an ambulance and spent the next three months there, and was grounded from drinking her bottle for what would be the next six or seven months.

After that, this therapist's name remained in the back of my mind and whenever I would mention her to our other feeding therapists who came to the house they told me that she wouldn't do anything more than they were.

They were wrong.
And initially I was upset that I didn't make more of an effort to contact this other therapist, regardless of what I was told about the therapy we were receiving at the time.
It does no good to be upset; instead I'll focus on gratitude that we are seeing her now.

This new therapist suggested that we meet with an occupational therapist to have Emily evaluated for Sensory Processing Disorder.
Again, we have been meeting with occupational therapists for Em's whole life, and never once did any of them suggest that Em had SPD.
I had her evaluated last week, and she loved the tests..



At the end of the hour long evaluation the therapist told me that Em didn't need therapy...at least not from him.
The only thing she has issues with really, is getting her hands messy and he feels that we can accomplish more at home than he can.
So it looks like we will be playing with pudding and shaving cream and other equally messy things.
Feel free to join us.

What else?

We met with a physical therapist and an orthotist (I asked the man what he was called because for the life of me I couldn't come up with it) because of concerns we've had with Em's feet.
Her heels and ankles turn in pretty badly and make it difficult at times for Em to balance.  And if left untreated, she would eventually have problems with her hips.

She was fitted for some braces and we got those last week.  She will likely need to wear them for a year or two, but thankfully they don't bother her, and we are amazed at the difference in how she walks when she has them on.

One of these days I'll see if I can get her to hold still long enough to get a picture of them.

Finally, we recently changed Emily's formula to something that is a little bit more age appropriate.
We are always really hesitant to mess with formula because of how sensitive Em's tummy is, but this has been our easiest transition.
She tolerates this formula better than she has any of the others, and she seems to have less reflux.

We meet with her GI doctor next month and will discuss the pros and cons of adding blended foods into her diet.
We know it would be a lot harder to track her calories that way but we would like to know that her tummy can tolerate food, so we may make the effort and start a blended diet slowly.

To be honest, right now I'm not sure that we'll ever get to a point where Emily will eat.

Last night Emily was playing with her cousins and got a little bit of dirt in her mouth.
She immediately gagged and threw up and then just cried.
If anything, it will be an incredibly long uphill battle.

It seems that more than ever, my life is filled with Emily's appointments, and now that we've added dropping off and picking up from school a couple of times a week...my calendar fills up quickly.

I feel like I've got to start scheduling in things like laundry and cleaning the grout.  Because cleaning the grout is important.

I have a lot of people question me about my blog ... why I don't write ... or when am I going to update...

I'll try harder, I really will.

Thanks as always, for checking in on us.









Tuesday, August 19, 2014

Checking In From Moose Creek Ranch

For the next few days we are nestled into a cabin that sits on the edge of a small stream, where the air is clean and smells of conifers, and the night sky is filled with stars that you wouldn't even begin to see in the city.
After Emily was fast asleep Jason and I snuck out of the cabin and went for a walk.  The air was cool and it was beautiful.  We didn't go far...although Jason reassured me that his headlamp would be a sufficient weapon against any bear we might encounter, I didn't believe him.

We are minutes away from both Jackson Hole and the Teton National Park.
We drove to see the Grand Teton tonight.
The sun was in the absolute worst possible place for a decent picture, but as it turns out, I'm in love with the picture I got.




Do you see that tallest peak?
Jason has climbed that.  Listening to his description of that hike, I'm grateful he did it before he became a husband and a father.

The stream that is gurgling right outside my window is lulling me to sleep, but let me share my other favorite picture so far from our trip.


God has given us such a beautiful place to live...I hope that you can see that beauty wherever you are.

Monday, August 4, 2014

Happy Birthday Emily


We love you sweet girl.
Thank you for coming into our family three years ago.



Friday, July 25, 2014

On Being Emily's Mommy

So here's the thing.

There is something about living your life every single day with the question of 'what if' in the back of your mind, or the not so back of your mind depending on the circumstance, that changes you.

There's something about quieting the fears, over and over again, every single day, that makes you look at life differently.

And there's something about the heaviness of an unknown future, more unknown than just the unknown that is part of existence, that makes you weary.

There are a lot of tears, there is a lot of grief that hits you when you least expect it,  there is a lot of telling yourself over and over again that it's okay to let go of what society tells you is the norm, there are quiet moments when you wonder if you are always, for the rest of this life, going to feel the heartbreak that came the day you were told there is something wrong with your baby.

But here's the other thing.

There are moments of clarity, glimpses of the bigger picture, of the eternal picture, that can only be defined as divine ... and in those moments of clarity you know that all of it - the good and the bad, the bitter and sweet - it's a gift.

It's a gift bigger than you can comprehend, and because you know it's a gift ... because you know she's a gift, you live your life differently than you might have otherwise.

You play in the water more, even if it means changing her clothes three times a day.
You laugh at the puzzle pieces that are thrown across the room, because you know she does it to hear the sound once they land.
You sing the alphabet song 27 times a day.
You let her sit on your lap while you're working, and patiently delete what she manages to type.

You stop at every single little thing that has a number and you wait while she points to each one.
You snuggle her to sleep every single night because it's what she needs.
You willingly share your space in the bed when she wakes up and comes into your room every morning between 2:00 and 3:00 because it's also what she needs.

And in those moments when your patience is stretched as thin as you think it can be stretched - you find a little bit more, and you remind yourself that she didn't ask for any of the hard parts of her life.

And when you finally drift off to sleep at the end of each day you hope to one day have even a portion of the courage and strength that this little girl has - and you thank God that you have the blessing of being her mommy.






Monday, July 21, 2014

Swimming and Puzzles - That's All We Do

Hey World,

I don't know about you, but I've been busy.
There was a time I blogged every single day - I had stories to tell and I never ran out of thing to write about.
Life isn't as exciting as it once was that's for sure - but I wouldn't change anything.
Snuggling with Emily every night makes up for every ounce of lost excitement.

Jason has been home for a few weeks and we've enjoyed our warm summer days.
We've done a lot of swimming ... actually, Emily has done a lot of swimming and Jason and I have done a lot of watching.
We're on our third pool of the summer.
The first was too small.
The second was too big.
And the third was just right.

(Actually the second one wouldn't hold the air and we gave up.)


 * * *

Jason and I went to a local production of Les Miserables a few weeks ago.
It was an outdoor theatre and it was perfect.
The sun set as Eponine sang "On My Own" - and really, it was perfect.
I've seen Les Mis on Broadway four or five times, and yet this show was more touching to me than all of the Broadway versions.
I was glad it was dark so that those around me couldn't see how much I cried.

This past weekend Jason, Becca, my mom and I saw Wicked.
I love it and could see it every week and not get tired of it.

Jason's parents drove five hours to be here to watch Emily while we went.
I was so grateful for their willingness to do that for us!

* * *

In all of my spare time (which is usually from the hours of 11:00pm - 2:00am) I redid one of our bathrooms.




I love how it turned out.
A neighbor of mine does finish work and when I told him that I wanted wrap around shelves he was more than happy to make them for me.
It's nice to know talented people.

* * *

I have a lot to update where our little lady is concerned but I'll save that for another day.
She's well and she's happy.
And she's two weeks away from turning three!
Where did the time go?!


Monday, July 7, 2014

I'm Feeling Lighter


We went hiking tonight.
It was the first time I've been hiking in a long time.
A really long time.
Truthfully, I was nervous to go because I was sure I would die.

In my other life I hiked three or four times a week, and I've missed it so much.

Tonight reminded me that I need the mountains...I think my soul needs the mountains.

I won't wait so long to go hiking again.

Emily sang the entire way up the mountain - there is nothing sweeter than Emily singing.

And there is nowhere more beautiful than where we live.












Monday, June 23, 2014

Simple Reminders

One night last week I stopped at a new park I had seen on the drive home the day before.
In our book, the more slides a park has, the better it is.
This park didn't disappoint and Emily was in heaven.

There were a lot of little kids playing, and one little boy, who was maybe six years old, took an interest in Emily.
After several attempts at talking to her, and only getting little squeaks and finger pointing from her, he turned to me and said, "She's a shy little one isn't she?"

I explained that Emily wasn't shy - she just couldn't talk.

"Really?  She can't say anything?"

"She can say words with sign language," I said, and then asked if he knew what sign language was.
He said he did and we left it at that.

A few minutes later Emily's shoe fell off and the little boy jumped down from where they were playing and got her shoe, and gave it back to her.

Emily made the sign for thank you and the boy looked at me with a question on his face.

"That's 'thank you' in sign language," I told him.

"I had no idea," he said.  He sounded like such a little grown up.

I could tell he was thinking about it for a minute and then he said, "Gracias.  That's thank you in Spanish.  I'm learning a language just like she is."

I immediately got a little teary eyed at the innocence and compassion of this little man.

He wanted nothing more than to relate somehow to Emily - to understand her.
And in his way he did just that.
He took her differences and handled them perfectly, and made it so that there was no difference at all...they were two little kids playing together, both of them learning a language that would allow them to communicate.

In that moment I hoped with all of my heart that people would always show my sweet Emily that much love, and I was reminded of the need there is for me to also extend that same love to everyone I come in contact with.

We should all spend more time at the park...that's the moral of the story.






Wednesday, June 11, 2014

They Should Make Longer Ropes

I'm at the end of my rope.
Truly.
I need something to give, but there is not a single thing that I can change right now to make life less end of my rope-ish.

Here's just a taste of life recently:

My debit card number got hacked.  I caught it after just one charge, and the bank blocked my card.  I don't usually carry cash and so I'm mostly stuck until my new card comes.  Tonight I took Jason's card to go and buy milk.

I ended up in the ER over the weekend due to a mosquito bite that quickly turned into cellulitis.  Enough people told me that cellulitis is not something you mess with, and has the potential to be life-threatening that I took them seriously and went to the ER (it was late enough that no other medical facility was open.)  They put me on a heavy duty antibiotic and it looks like I'm going to live.

Emily's occupational therapist came today and after assuring me that Emily is smarter than any other child he sees, he kindly told me that he feels Em's lack of speech at this point is a more severe problem than we've assumed up to this point.

And this comes after learning this week that insurance won't cover private speech therapy because speech isn't something that Em had and then lost.

The therapist also recognized that keeping Emily from being bored is a full-time job.
And it is.
He gave me a few apps to download that are for preschool/kindergarten age kids - he thinks they will be at the level Emily is ready for.

Bless her heart.
She's leaps and bounds ahead of the game and she can't even say the word hi.

It's becoming a source of frustration for her actually.
Emily is the most calm, patient, happy toddler I've ever known, but in this one thing, she loses patience quickly.  And all the sign language in the world doesn't help that frustration...because in her mind she thinks she's talking, but all that comes out are her little squeaks.

(Speaking of patience...I was texting with a person from our local search and rescue team.  I have some medical supplies I am going to give to the team.  Every single time this guy referred to patients they treat, he spelled it 'patience.'  I wanted to tell him that I could only give him the supplies once he learned how to spell the word right.)

One more little thing and then I'll let you see some pretty cute pictures of our girl.

Let's make a pact right now...that we will never ever ever ask someone when they are going to have another baby.
Say it with me: "I will never again ask a woman when she is going to have a/another baby."

I don't need to elaborate on the reasons why we're making such a pact right?
Because I will.
If I need to.
I'm just worried I might not be able to make it sound nice...and stuff.

Here - some pictures.
This little waterfall is right outside of my office.
When Em needs a break this is where we go.