All Trades...

Throughout my life, people have offered ideas of what I should "be".  My earliest memories of being told what I should be were an artist, or a ballerina.  Or maybe I would be an actress, or Miss America.  I could be a teacher, or a mom and a wife.

As I grew up through my school years, I never had a strong sense of what I wanted to focus my lessons on.  I figured I would be a teacher of some sort, because I truly loved children and teaching.

I got married and we had Abbey, so I was then a wife and Nene, and worked in an office.  I still dabbled in art, and taught Abbey through the summers to keep her on track for when school started back in.

When Max came along, people have so many ideas and offerings of what I should do and be.

You should be a doctor.

You should be a nurse.

You should be a genetic counselor.

You should be a hospital administrator.

You should write a book.

You should start a clothing line for children with disabilities.

And since Abbey's living full-time with us, she has some ideas too.

You should open a restaurant.

You should write a cook-book.

You should be a teacher.


I should.........I could.........but I already am all these things.  I know all of these recommendations through my life have come from people seeing a quality in me.  And it makes me smile when I hear these suggestions.  But really, I'm so happy getting to do all of them at once.

One day, I may focus on one thing and do it.  But for now, I'm happy to be a Deana of All Trades.

Addie's Day...

Addie bug is staying over for a couple of days and we got to have big fun today!



Addie loved reading and listening to the same books Abbey loved when she was around the same age.  We had to pull out our original iBook computer to find a cd player in the house.  Good thing it still works, and it helped that it was Max's old one with Sesame Street stickers all over it!  It was funny to open it up and find all of Max's 5 year old tastes on there still.  I can't believe a computer from 2001 still works so great!

She woke me up bright and early wanting to watch shows, and play outside, and ring the neighbors chimes at 8:00am.  Aunty isn't so much a morning person, so I offered we blow bubbles if she didn't want to watch a cartoon.  She ate her breakfast, and played with bubbles, and watched her cartoon...that was hour 1.

Next was bath time, where George thought he should help by lapping up her delicious bubble bath water.  It was quite a juggling act to keep him out of her bath, but still in the bathroom with us so he didn't go downstairs to wake a still sleeping Max up.

After bath, it was beauty shop time, so I combed her lovely locks and curled them around my fingers.  Having had stick straight hair my whole life, I never get tired of seeing this little one's boingy hair!


Time for coloring while we I got Max up and his morning routine going.


Before we knew it, it was time for Max's speech therapy.  Addie kept herself busy on Abbey's computer playing games on pbskids.org, and Cbeebies , and finally ended up watching some Mickey Mouse videos from the 1930's on youtube...thank you youtube for always having a video for a four year old's ever changing want at the moment!

After therapy, Max and Addie drew pictures for each other.




We watched the Muppet Show, while I hurried with lunch and Addie loved Princess Piggy.  I kept telling her it's Miss Piggy, but she was not having it!  Princess Piggy it is!

Max's nurse came over for a respite visit, and Addie and I took off for the afternoon while Max got to enjoy some peace and quiet!

We first went to the park, where I was so busy pushing swings, and spinning merrygorounds for one that I didn't get a photo.  But, imagine it was very spinny, and very dizzy.

After we left there, I told her to close her eyes and rest while we drove to Whole Foods to get a sweetie.  Addie and I love our sweeties, and they are always special treats. She nodded off before we made it out of the parking lot, so I drove around for 30 minutes to let her sleep.

When I parked and turned off the car, she slumped down like this as she was waking up.  Funny that she kept in a good position all while I was driving, but as soon as the car stopped running she melted!


We went into Whole Foods and got a few groceries, and finally, the special treats...madeleines and flowers for Addie, and a juice box.  I got one of the madeleines for myself too...it was after-all a special sweetie day!



We ate our snacks in the car, then headed back to the house to unload the groceries and to pick Abbey up to go shopping.  Since she has to give a speech in class soon, she needs some dressy clothes, her least favorite type of clothing.

While Abbey was trying on, I let Addie try on whatever she wanted.  The store was empty, and I picked up after her.  But she was like a tornado going through trying everything on that sparkled!




And, it was the creepiest thing ever but she kept hugging all the manequins.


She would hold the men mannequin hands, and run her finger along the stomach or arm of the women mannequins, and then hug and kiss the children and baby mannequins.  I asked what on earth she was doing and she said in a little baby voice..."they're just so cute!"

Abbey found her outfit, and Addie got a treat too.

Pinky Pie gloves that she just had to wear, because she was soooo cold! (It was in the 80's)

We stopped to make wishes and throw pennies in the fountain.  Four pennies for Addie, because she's four.


She talked to her Mama and Papa, who are still in the hospital as Papa recovers from surgery.  She told them about her day, while she played outside in the rain.


She got an early dinner, and off to bed she went to listen to more books.  I let her pick 3 tonight.  And when I went up to turn the computer off, I found her sound asleep.

With a book on her face.


Tomorrow we'll get to play music therapy, and school with Max.  For now, I need to get to sleep since she's up and at'em with the sun!

I'll be back...

I'm sitting on my sofa, in my living room, all by myself, on the computer for the first time in 20 days without feeling any sort of guilt.

Max is home.

That means, we're all home.  And not shuffling back and forth from home to the hospital.

I've been catching up on some emails, and responding to people welcoming us home, and giving general well wishes.  I'm not at all caught up...just starting at the list of things to do.

So, for now...home things are calling.  I'll be back soon.

Baby Sister...

30 years ago today, I met my first baby sister.  She was my baby sister for a lot of years, before the baby-baby was born, so I guess now she's just my younger sister.

She's one of my earliest solid memories.  I was just about 3 and a half years old when she was born, and I remember bits and pieces of that evening.  My dad lead us through the hallway to see my grandparents in the waiting room, and it was dark outside.  He told us we had a baby sister, named "Angel". . . at least that's what I heard, and I thought it was so neat that I had a sister named Angel.  I finally got it right, that her name was Angela May, and we'll call her Angie.

My Uncle Daryl (Bubba), and Grandmama took me (and maybe my other sister and brother) in the elevator to see her in the nursery.  I remember Bubba telling me not to touch Momma's stomach because it was sore.  And Grandmama didn't have any shoes on, just in her stockings walking around the hospital.  She must have been tired or hot.   It was, August in Oklahoma!   Then I remember seeing her through the glass.

This weekend, I got to get away from the hospital for a while to take that baby sister out to a fancy dinner.  We laughed, and goofed off, and had a wonderful time.



Happy Birthday Baby Angie May!



 I'm so glad mom and dad rescued you from that dumpster under a Domino's Pizza Box!

Inside myself...

Never is it more evident to me that I am truly an introvert, as when we're in the hospital.

The mornings start at around 6:00am with a team of surgery fellow, residents, and medical students waking you up.  Most of the time I have just drifted off to sleep when they wake me to give me an idea of a plan for the day.  Not the best moment to be making clear decisions or making sure my questions are answered.

At 7:00am, nurse shifts change.  The night nurse comes in with the day nurse to go over everything she had done the night before, and give her an idea of what is to come for her oncoming shift.

In that same timeframe, the floor Resident comes in to do his/her assessment on Max.  A bit after that, the Senior Resident comes in for their turn to listen to his lungs, belly and heart and get an idea of what they'll be working on for the day.

Morning medicines start coming in and he's hooked up to the never ending pumps and beeps.

I try to hurry to the restroom and wipe the sleep out of my eyes, brush my sleepy hair, and brush teeth...or at least chew on some gum...before the Attending doctors, and specialists start their rounds.

We usually stop around 1:00pm to eat.  The morning is spent seeing the nine different teams following Max.  Each team has at least 2 doctors who come in for a visit.  They come in and want to know what our understanding from all the other teams is...and then give their advice for how things should go.

Before we know it, it is time for shift change again, and 7:00pm.  We need to get something to eat for dinner, and then one of us goes home for the night with Abbey and the dogs.

The other stays on and doesn't sit down until nearly midnight because the start of their day is happening, as the end of our day is happening.  Max is tired, and we are tired, but still - we are the only constant in Max's team.  We're the only ones always here.  So, we get to fill in the empty spaces.

Once is gets quiet...and I use that term so very loosely...and the lights go down...again, not even dark in these rooms...I feel like just hiding in a closet so I don't have to talk to a single soul.

I hit my limit this afternoon of talking.  I couldn't bare it another minute, so I took a walk.

I think it must have been unseasonably cooler today.  I walked outside and the wind pricked my teary eyes.  It was a beautiful day.  One of those days that tells you change is coming.  I walked through the gardens at the hospital and ran my fingers through the tall prairie grasses.  I listened to the gravel crunch under my feet.  I stopped and watched a bunny chewing on a flower.  And I didn't want to go back inside.

But, there was one reason I couldn't sink into my quiet place.  That is Max.  He needs me to be out of my shell, and speak for him because he can't.

Hopefully we'll find some answers soon as to what is going on with him.  And when we finally do get home, I hope to not have to talk for a while!

Ticking away...

The other day, my brother in law texted me and said, you haven't written on your blog since April, that has to be some sort of record, right?

I suppose it is.

I could give all the excuses, life has been busy, I haven't known what to write, Ive been writing over at Max's blog.  All true, but also, I just haven't taken the time.  Thinking that my energies are better spent elsewhere.  And if I have to update and write anywhere, more people care to know what's going on with Max, than what recipe I've cooked up, or the ramblings about my day.

But, I've found myself with some time to write.  I was hoping I'd find some time before the end of Summer, not realizing that I didn't want that wish to come about like this.

Max is once again in the hospital.  In fact, I guess he actually had a couple of procedures back in May that we were here for too that I didn't write about.  Now we're in for yet another emergency abdominal surgery.  This time is was caused by scar tissue from the other surgeries pinching his small intestines.

We are hanging out in the PICU at Children's.  He's doing okay today.  He's uncomfortable, and has a 6 inch (I think, it's covered) incision down his abdomen.  They left it partially open this time to heal.  Just the thought of that makes me queasy.  They said we'll clean it with water and a syringe.  Thank you God for nursing care at home, because this momma is not thinking I can handle that.

I have joked about what we're doing this summer to teachers and therapists, "We're not making any plans.  As soon as we make plans, Max ends up in the hospital.".  True to those words, we started planning a trip to Oklahoma to see my family on Labor Day, and a camping trip in a couple of weeks for my sister's birthday.

Seeing him laying in the hospital bed not able to do much of anything, both of those plans seem impossible.  And of course we don't know the outcome of his recovery at this point.  But, I can't believe much that we'll be going anywhere.

So, there's the update.  Life just keeps ticking away.  I am going to try to get back to writing, but I'm hoping to find some writing prompts, to actually practice my writing on here, rather than just updates.  We'll see if I have the time to do that!!

A new dessert...

Paleo "Almond Joys"...Steve and I came up with these a few days ago, dried dates, coconut oil, cacao powder, and an almond. These are insanely good!

The Sun for My Son...

My last class glass blowing class was this past Friday.  After skipping a week, I found myself really ready to get to the class and make my next piece.

I had a nice time chatting with Agnes, and the other class mates.  I told her about the last dream I had about glass after the bowl class.  That night in my dreams, I was making a sun.  I was telling everyone it needed to be bright yellow, for my son.

Agnes helped me think it through and I had help from Cody and Renee to put it together.  I did a lot more on my own on this piece than the other two pieces.  I wanted to try to do as much of what I learned this time, being the last class.



It's yellow, with spots of red, and orange, with a shimmer too.







Max thinks it's pretty cool too!



I had such a great time making all my pieces of glass art!

Stella...

After the first glass blowing class finished, Agnes said to make note of any dreams of glass we had.  I thought it was a given I would dream about glass, because my dreams are so vivid, and I dream regularly. I didn't know just how much the dream that night would unfold into the piece I made the second week.

That Friday night, I dreamed I was making small paper-weight sized strawberries.  They were red with green tops.  When I woke up, I made note in my journal about the dream, but didn't plan on talking about it to Agnes.  I thought that surely everyone dreams of the glass-blowing class after they are there for over 4 hours playing with glass and fire.

The second Friday rolled around and it was time for us to choose the colors for the bowl we were making.  She let us look through some powder colors which went all through the glass, rather than in streaks like the chips of glass do.  She pulled out a blue, and then a pinkish color.  "This one's called Strawberry", she said and she poured a little out.

I thought I should tell her about my dream at that point, so I did.  She told me it would be a pink color, but we could add red and it would look like a strawberry.  She said that her pieces will come to her in dreams, and if you get inspiration in a dream you should go with it.  That's how my second piece came to be a strawberry bowl.



I was first of the four of us to go.  Agnes helped a lot on my piece, along with her apprentice Cody.  There were a lot more techniques to making the bowl, and a lot more involvement from all of the "team" of students and teachers.  It was a fun class and I really love the bowl.



The Friday I was to go back for my last class, Agness called as I was leaving to say that the gas was leaking, so we wouldn't be having a class that night.  I had to wait two weeks to see my strawberry piece. When I got there this week, I was excited to see my bowl for the first time, it really looks like a strawberry.

It was pink with swirls of red throughout.  Because we put it in a mold, it made some really interesting shapes in the glass and some air got caught too, which I think makes it awesome!






When Agnes asked me about the bowl, I told her how I wanted to use the strawberry color as soon as she brought it out because I thought it would look like my Nanny's vase, that I got from my Grandmama.   I told her how similar the color was, and how it was funny how I've thought of Nanny several times since starting the glass blowing because her names was Stella Agnes.  Agnes smiled and said, "My middle name is Stella.".   I just had to laugh.

Strawberry Bowl with Nanny's vase

The bowl carries a little bump on it's side from where I touched the side of the furnace while spinning it and bringing the pipe out.  Agnes said we could try to fix it while we were working on it, but I wanted to keep it.



Because now, it REALLY looks like Nanny's vase!



I've named my bowl Stella.  I don't know yet what her function will be, but for now she just makes me smile.

Fire and Glass...

For my birthday, Steve got me an amazing gift.  A three week glass blowing class at Agnes of Glass  in Denver.

My first week, I was pretty nervous leading up to the class.  My biggest fear, breathing in through blow-pipe, called the punty pipe, when I was supposed to blow out.  In hind-sight, I don't know quite how I could accomplish that mistake, but nonetheless, I was nervous.

Agnes, and her apprentice, Cody, are there through the entire process of gathering the crystal glass, marvering (rolling the hot glass on a steel table to shape it), blowing the piece out, shaping it with blocks and newspaper, and tapping it off of the pipe to put it in the oven to cool slowly.

I've been amazed at how much I've enjoyed this form of art.  I thought I would, and have always had a fascination with watching glass art, but there is something pretty amazing about making glass.

I'll share the first week's pieces, then as I get the others back, and photos taken, I will share those as well.

First, I got to make a paperweight.   I chose blues as the glass chips I wanted for the flower.  There were endless options, but these caught my eye right away.



We gathered the crystal, marvered it, put the color on, gathered again, shaped it with newspaper while rolling the tube on the bench, and then put a pick through the glass to make the flower.  Mine made this awesome bubble.





That same night I got to make this amazing meditation globe.



I went with similar colors without realizing it.  It's crazy how when the glass gets so hot, it all looks red, so I maybe should have tried a different color-scheme, but I love the way this one turned out too!

I blew the air into this globe, and then Agnes and Cody helped to get it much bigger and shape it.  I think unless you are a Master Glass Blower, you have help on your pieces.  And I'm glad they're there to help out!  When we put the "cookie" or base on the bottom, the glass can sometimes drip into the piece.  Mine did, and then came bubbling back up!  It was pretty dramatic.



I stamped a "D" on the bottom to show it was mine.



I'm just back from my last class, where I made another globe.  I'll take pictures of the little bowl I made the second week and just got back tonight when the sun comes up tomorrow.  For now...I'm off to dream of fire, and melted glass.

Keeping up...

Sometimes, I wonder how in the world I used to blog daily!

I think it was back in the days that Max slept most of the day, or was content with playing on the floor with his toys, or before school, or before daily therapies.

It's been the opposite of most kids his age.  Usually when kids start school, there is more "mom time" in the day to get things done.  I still have plenty that needs to get done with the running of the house, but now I have school time twice a day, a therapy a day, Abbey's school stuff, doctors appointments, house stuff, and two dogs.  It's no wonder I rarely have time to sit and write a thoughtful blog post!  Most of the time I do good to update facebook!  If I do have time to put up a blog, I usually do it on Max's webpage, because, really, he's more fun to read about!

I'm hoping Summer will prove to give more time.  I've actually told all of Max's therapists we're taking Spring Break OFF!  He will only have an MRI/PET Scan on Wednesday, and I want us all to be well rested for that!

So, until then, thanks for reading, and keeping up with our busy lives!

The big 3-3...

On my birthday morning, I woke up to the sun shining, and thought...It's my BIRTHDAY!!!

Growing up, I was the rare bird who had her birthday in the late winter.  Three siblings were summer babies, and two right at Christmas.  So, my day was always a special day.  A reason to celebrate after the holidays!

Through my adult years, there have been years of parties, and extravagant trips, and restaurant tours.  And there have been years spent in the PICU with Max, and a year I was terribly sick with strep and two ear infections.

This year, Steve offered up many ideas of fun, but, I just had one request.  I wanted to do what I wanted to, when I wanted to do it, with whom I wanted to.  Basically, I just wanted to have a day all about me.

Well, like always, he pulled through and made it a wonderful birthday.

I got out of bed to find him gone, but he left a note.


And indeed, Max's medicine was made, and his food was ready to feed him.


And the kettle was warm.


Oh, and this little spread.


And a gift.


GLASS BLOWING!!!!!!!

While I was getting Max ready to eat, my mom called.  She wanted me to open the gift from her, so I got it torn open and found this.


Very soft, and very cozy!!

Steve and George got home as I was getting around and we got out for lunch at the park.  Then went into a couple of shops I've been wanting to check out.

And then got ready for my sis and family to come over for birthday dinner, of bbq chicken, okra, and squash, and potatoes, and chocolate cake.

Addie met me at the door as I was getting back from the grocery store and squealed "Happy BIRTHDAAAAY!!!!".  That was a GREAT greeting!

She made a card for me and wanted me to look at it right away!



Ang asked her to tell me all about it, so she said, "This is your hair, and this is your face, and these is your eyebrows, and this is your purse, and this is your....bottom.".

After I stopped laughing, Ang explained that when she asked Addie why she had drawn a bottom on her picture she said, because people have bottoms!  Fair enough!

They also picked these flowers out.


No, it's not a mirror image.  Yes, I did get the exact same flowers from Steve and Ang.  Also, Ang and I were wearing the same outfit again.  We need to coordinate that better I think.

All in all, it was a great birthday.  I heard from my family and friends.  Got to talk to my dad and brothers on Facetime.  Got a hug from my niece who draws pictures for me.  Max was a trooper and had a fun day.  And Steve, once again, treated me like a Queen.

Two for Tea...

It's my birthday weekend.  I try to squeeze out as much celebrating of my special "day" as I can, and Steve is kind to oblige.

Today, my friend and fellow supermom, Rebecca, shares my love for the fancy and fine tea traditions.  The last time Max was in the hospital, she told me she wanted to take me to tea at the Brown Palace in Downtown Denver.



We set up the date for today,  and as a bonus, got to celebrate for my birthday.

I got to dress up, something I never get to do.  In fact, before I got my dress on, I had spent all morning in grungy sweats and leggings so as to not mess up my skirt!  It certainly felt like I was about to live an alternative life for a couple of hours once I got dressed and the transformation from house-mom, to afternoon tea attendee, occurred!

Steve wanted to get my picture outside, but goodness-gracious it was windy!


(I think I look like my dad in this photo...just the face, not the dress.)

The tea was so lovely!  I ordered black currant tea...my favorite!  Then they brought out the selections of sandwiches and scones and cakes.  Rebecca was good to point out which order we ate what!








They even brought out a little birthday treat...chocolate and raspberry mousse.






The violinist played Happy Birthday to you.  Along with other very pretty music.

It was so much fun!  And I enjoyed getting to know my friend more, something that is sometimes hard to do in monthly meetings with a large group of supermoms.




After tea, we got up and walked around the hotel a bit.  It is a grande "palace".  I loved imagining the Victorian era ladies walking around with their fine clothes and hats!



I've already been planning out who else I can take!  It was such a beautiful experience.  I'm thankful for kind friends who find the little things in life we can enjoy together!