Would You?

Let's play pretend.  You have a beautiful new baby.  You are thrilled and excited!  Your new beautiful baby fails her infant hearing screening but they don't seem super concerned.  Babies frequently fail because of the flailed present during delivery, they say.  Bring her back to the hospital in a few days and they are sure she'll pass.  You go on your marry innocent way.  She fails the follow up screening, 3 times.  After that they cut you off because it's a mandated sedated hearing test after 4 fails.  Suddenly people aren't saying it might be a fluke anymore.  They CT her ears and based on the fact that nothing in her ear is as it should be they stop being coy.  They tell you your' beautiful new daughter is probably profoundly deaf.  You try and make it sound OK.  After all you have been around deaf people before.  Several of your family members sign (OK I know, I know, this is really specific pretend.  Go with it) and you even know a little yourself.  You imagine the "fun" stuff like picking out hearing aids and glittery ear molds.  Then some good news!  She isn't profoundly deaf, just moderately. Still means hearing aids so you make the best of it and pick out the sparkliest ear mold you can.
Years go by and you child doesn't really talk.  She yells, and vocalizes and such but no real words other than "no, daddin, mom and bebe".  Then something changes.  She goes profoundly deaf for no explainable reason.  The doctors each give you their opinions and then say "let us know what you decide".  You agonize over your choices. Continue with current treatment or change things up? You were fine with deafness remember, you decided 4 years ago?  You'll just learn to sign and she'll be fine.  But you found out about an option called a cochlear implant.  It could make it possible for her to talk. She would hear you.  Actually hear your words and would hopefully in turn speak. Does that mean deaf is bad?  Does it mean no sign language or that ASL is bad? Does that mean I think something is wrong with her? What would you do?


The Time

Tomorrow is my baby's birthday and I'm filled with hate and distractedness.  On a day when I should be reflecting on her very hard fought life I am filled with rage.  I am so angry at people for not helping a little girl who works so hard have a little easier time at her life.  To give her a boost...because she earned it.  She worked her tiny little ass off!  For what?  More hard work apparently.  Not to say she isn't progressing, but as a mother it breaks my heart to have to see her fight so hard to do what most take for granted.
It makes reflecting on her birth so painful.  To remember that I thought, if I could just get her this or that she would be...something...I don't know.  It's just a compulsion that I think every parent has.  I'll get   my child whatever help they need!  No matter what kind of help it is, if they need it you get it. Until one day, you can't.  Someone says no, your child doesn't deserve that.  Your child has to work much harder to get the same thing.  And they act like they gave you a present, with a pretty bow on top.  A box full of excuses and look how great she's doings.  Basically the finger.
Why?  I said it.  I have never been able to be that parent who never asked why.  I have always wanted to know.  Why Emmeline?  Why our family?  What made me so qualified to do this?  No I'm not a super strong person, no I had no experience with anything like this, no it's not fun.  It's hard.  Hard to look back on and hard to live.  Knowing that one day, Emmeline will be fighting these fights.  I wont be able to keep them from her.  Then she'll know...


I Can Do Anything, That's Everything, All On My Own!

Emmeline really like this show called Charlie and Lola.  It is told from the point of view of the older brother, Charlie, and is all about his small yet funny sister Lola.  Lola, reminds me of Emmeline.  She likes to be spoiled but also like to be independent if that makes sense.

Today my baby became less my baby.  She went to her first day of PreK.  All on her own.  We found an amazing school called The Hearing School of The Southwest. It's a great school about 30 minutes away that is for children with CI and HA that helps them get ready for mainstream school. She was a little nervous as we talked about it the last few days but was so excited that she kept coming in my room very early this morning, over and over.  When she went to bed she hugged Isa extra tight and told her she would miss her very much.  It was a melt your heart moment. We made it rough the night though and she was extra adorable getting ready today. We also made this Isa's official first day of school even though she started a bit last week.

Obligatory Sign pictures.

Very tall 5th grader.

When I gave Emmeline her new backpack and put it on her she kind of wobbled and I had to stead her.  Then I showed her that you could roll it and she lit up and said "Oh, it's perfect!" Very cute.

Isa chose a cool binder with different colored musical notes all over it but didn't want a picture.

Cute sisters.

Walking into school.  So big

All of us wanted our picture with her in her "little school" as Emmeline calls it. 

Family shot

 Chatting with her teacher

Mushy part.  I feel very blessed a more than a little overwhelmed that this:

Made it to this:

I'm choosing to shut out the reality of this day until a future day when I can process it in a healthier way. Or at least when I'm not already super congested.  


I Have Tulle!

So on Saturday we had a weird day.  Josh was actually home most of the day!  This meant that the girls were all over him, which in turn meant they weren't all over me. YAY!  So I decided I wanted to make something. I got on my "Things I would make" board on Pinterest and selected this beauty.

I had almost forgotten about it but my sister, Terra, mentioned it when she was hear.  So I spent all this time printing out a huge map and taping it together to take with me to the hardware store to make sure the boards were long enough.  It took forever.  I decided to take a break and scan my Facebook before heading out.  Big mistake;  apparently it was 108 with the heat index and I had already showered that day.  So...no cool wooden map today.

I was pretty bummed since I had already gotten by creative juices flowing, which is no small task for me.  Then I ran across this. But it takes a ton of tulle :(

Then I remembered that I had previously tried to make this, but failed miserably.

This was when I realized, hey, I have tulle! And luck would have it I also had a wreath form :)
So I set to work.  Luckily I had purchased a spool of tulle, a spool of tulle, a spool of tulle, I made a tongue twister! Anyway, I had a spool of tulle to make a beltish accessory for my skirt, which made it way easier since I only had to make one cut for each strand.

So basically you cut 24-28 inch pieces of tulle, I ran out of y spool before I was done so I have to cut out a bunch of long rectangular pieces out of my failed skirt.  Not fun at all.
Then you fold the each piece in half and loop it through.  Pretty basic.  You just do it over and over and over...

 I decided to put it on our huge main wall and luckily Josh likes it.  I want to add a big tulle accent bow to the bottom left side to take down the "Halloween" look of it.

 This was supposed to show the accent bow but in black, yeah you can't really see it...

At least I got to make something semi quick and in the AC!