About Hope

A few weeks ago I had a dream where Aubrey spoke to me.  The details of what she said are now fuzzy, but I remember how it happened.  We were in the kitchen, and she was gesturing and babbling...making all of her weird expressive sounds just like she usually does.  And then the babbling gradually started to morph and shape into actual words.  And then the words formed into sentences.  In my dream, I stopped what I was doing and watched and listened.  And then I said "It happened!"

Then I woke up.  Tears stung my eyes, and I couldn't breathe.

Over the years many people have told me that they have had dreams where Aubrey talked to them.  Family members, friends, even random people that don't really know her that well have had dreams where she spoke.  It always kind of bothered me, because I never had dreams like that.  People would tell me about their dreams and then I would be left feeling envious of their communication with her, even though it wasn't real.  And I wondered why all these other people had these dreams and not me.

Sometimes I daydream about it.  Like when I'm sitting next to her on the couch or laying with her at bedtime.  Sometimes I'll just imagine that she will start talking to me about school, or whether or not a friend could come over to play.  And I imagine this whole back and forth conversation.  I don't know why I do this to myself.

Just today, I was in the car with the kids.  We were on the way home from the park, and I was talking to them about what we should have for lunch.  I asked Aubrey if she wanted a grilled cheese sandwich or chicken nuggets.  She can only respond with gestures for yes or no, so I asked separately."Do you want grilled cheese?"  She points out the window.  "Do you want chicken nuggets and apples?"  She points out the window.  I asked her again and again and all she does is point out the window. Finally I get frustrated and say, "How am I supposed to know what you want if you won't tell me?"  Then Charlie piped up and said "But Sissy can't talk, Mommy!"

Having that dream slayed me.  After I woke up and caught my breath, I laid there and wondered when it would stop hurting.  Will it ever stop hurting?

We no longer have hope that Aubrey will someday develop speech.  We know it won't happen.  We don't expect it, we don't pray for it, and we're trying to make peace with it.  The hope that lives on is a hope that one day Aubrey will learn enough to let technology do the talking for her.  The hope that there will be a time in her life where communication is easier.

And most of all, the hope that someday it won't hurt.  That one day she will be old enough, and we will be wise enough to only know her for who she is and all that she possesses.  Period.  That we will be able to let go of the pain of lost experiences and missed conversations...and just let it be what it is without the pain.

Plan of Action

Once upon a time, Summer used to be my all time favorite season.  I love the fourth of July, I have a summer birthday, and a summer anniversary.  Swimming, hiking, campfires in the mountains...so many of my favorite activities are summer activities.

But the thing is, that summers started to get really hard.  Once Aubrey started preschool and Kindergarten, having her at school became a much needed respite time for me.  She thrives so well in the structured setting of school.  And once she started school all day....well,  I started to feel like a person again.  And over the last couple of years summer has become a bit of a nightmare.

Because.  Because of so many things.  Because it is incredibly hard to take Aubs anywhere.  It literally takes a team just to go out and about with her.  Because she doesn't have friends to play with.  Because she doesn't know how to play with Charlie, or even entertain herself.  Because her short attention span means that she ends up following me around all day crying and being naughty.  Because she can be a destructive little (big) girl.  Because sometimes I feel like I literally might die if I have to change another diaper.  Because, because, because.  Because of too many things that no one could ever really understand unless they had their own Aubrey.

And here is the truth.  It's so very hard.

 I love Aubrey.  I love her with all of my heart.  I am, because she is.  You know?  But it takes a village to raise Aubs.  And during the summer, that village shrinks by a whole lot.

So this year when the snow melted, and the days started getting longer and warmer...panic started to set in.  This quiet dread began to bubble in my belly.  I tried to push away the thoughts, the memories of isolation and exhaustion.  But it's always in the back of my mind like a bad word that really wants to be said.  Summer.

Yesterday as I was driving home from my mom's house, with sleeping kids in the back seat, I had an hour of quiet to really think about all of this.  I decided that I am not powerless.  I am capable of making it better than it has been before.  So as I drove, I made a mental plan.  A list of goals that I hope will make the summer months better.

- I need to make sure I am taking care of myself.  Sometimes I feel like a shell of the person I once was.  Like I don't exist.  But I need to be at my best, so I can give the very best parts of myself to my children and my husband.  So I am going to start seeing a therapist.  I've been thinking that it would help for a long time now...but I think I'm finally ready.

-I am going to start going to bed early.  Because even though my kids have started waking up at 6:30 in the morning...I still have a nasty habit of crawling into bed at midnight.  Makes for a rough day...

-I'm going to ask for help.  It's a hard thing for me to do.  But I really need to get over that.  Maybe it means we'll drive to my moms house once a week.  Maybe I'll hire one of my teenage nieces to spend a couple hours a week with Aubrey.  We don't have to do this alone.

-I am going to increase my exercise from 3 times a week to daily.  It's vital for my metal and physical health.

-I refuse to be isolated.  That's all there is to it.  We are going to go out.  Even if Aubrey is going to cause a scene.  Even if I have to change her diapers in the back of my car because there is no where else to do it.  Even if it's hard.  Sometimes hard out of the house is better than hard in the house.  Sometimes :-)

Hopefully doing these things will help me to still feel human, and help us all have a better summer.  I'll be sure to let you all (all three of you?) know how it goes.  For now, spring break hasn't been so bad...and in a few days Matt and I are off to Mexico!

Adios

All About The Aubs

Blah.  Tonight is another night where Matt is working late.  It's 10:15 as I am typing this and he still isn't home.  Ugh.  I hope this means he won't have to go in at all over the weekend.  The good news is that we got to see him in the middle of the day!  Hooray!  Aubrey had her spring program at school, so he left work for a little while and met me, Charlie, and his Mom to see the program.

 (Blurry, but it's the best I could do)

It was super cute.  This year was a "Shrek" theme.  They can't do a typical play or musical, because the majority of the kids are non-verbal, and many of them aren't mobile.  But the people at this school are incredible!  They go above and beyond to put on a wonderful show.  And they use so many creative outlets to help the children have a moment to shine.  Including some kids who use iPads to communicate their lines.  It's really just wonderful.  It brings a tear to my eyes every time.  Seriously...for all the challenges, and pain, and struggle...that school is a really happy place.

Aubrey is doing well.  I wish I had a bunch of points of progress to write about, but I don't.  Right now at school she is working on matching letters with the sounds they make, and that is going really well.  Hopefully that will lead to being able to do sight words.  Which would be awesome!  Oh!  Here's something.  The other day I was doing that parent thing where I spell something out so the kids don't know what I'm talking to Matt about...and she totally knew what I spelled!  It was so funny.  I spelled S-T-R-O-L-L-E-R.  And suddenly she just started bouncing up and down and making her excited sounds...because the stroller is pretty much her favorite thing in the world. 

She is also working on picture communication.  It is slow going.  She can do it when she is asked to, but she never initiates it.  But they've sent the picture book home so we are practicing with it here as well as at school.  It's going to take some getting used to.  We've been doing our own type of non-verbal communicating for so long.  But the point is for Aubrey to have a standard way to communicate with everyone, not just us (We who know what all of her different gestures and sounds mean.  I mean we are nothing if not Aubrey whisperers:)

Once she masters the picture communication, the long term goal will be to use an iPad program called Prolaquo To Go to speak for her.  Speaking of iPads, I'm pretty sure we're going to need to set up a fund or something.  Aubrey is already on her 2nd...and I don't expect it to make it through the year.  Remember that one time when she ate my iPhone?  Yeah.  Her constant need for oral stimulation is really rough on technology.  And our furniture.

What else?

They are still working on toilet training with her at school.  And we are working on it at home too.  I really don't know how hopeful to be with that.  I keep hoping that someday something is just going to click, and she's going to decide she doesn't like wearing a diaper.  Especially when we do the budget and add up how much money we spend on diapering her every month.  And she's just getting over a really bad rash that needed medical attention.  The poor thing.  It's really hard to see her have to suffer like that.  But we just haven't found the magic trick to getting her toilet trained.

She is still the happiest, brightest, and most affectionate girl in the world.  And even though sometimes my writing might make it seem all hard all the time, there is an awful lot of fun and love to go with it. :-)

Oh, P.S. Matt got home like five minutes after I started writing this.  We talked and cuddled and now he is snoring on the couch while he pretends to watch Jimmy Fallon.  I better get my man to bed. :)

Because I haven't written in forever...

I keep wanting to sit down and write, but then I feel this irrational need to catch up completely on all the things I didn't blog about, but should have.  Which is a really daunting task.  So I'm just saying forget it.  If I try to catch up I'll never blog again.

 So.

We recently took up the challenge of trying to find a diagnosis for Aubrey.  Again.  Which was a mistake.  We keep saying we're going to let it go.  And we do for a while.  Then something new starts, like new behaviors or new compulsions, and we think...hey!  This could be something!  And we ring up her doctor and her doctor refers us to a specialist that we haven't seen yet.  This time it was a Neuro-Psychologist.

Then we get all excited at the prospect of learning something new.  Something that can enlighten us a little more about our mysterious girl, or shed some light on what to expect for her future.

And inevitably, the specialist is unable to tell us anything we didn't already know...which is to say, not a whole lot.

The neuro-psychologist did tell us a few things.  1) Aubrey will never talk (which we already pretty much knew...but ouch!).  2) 90% of children who have severe developmental issues will never know the reason why.  And Aubrey is one of the 90%.

I sat on the couch this evening after the kids went to bed, and thought about it all for a while.  And I don't really know why it matters so much to me.  But it does.  I want to know why!  Even though it's not going to change her life or course of treatment, and it probably won't change ours that much either...I still just want to know.

Even after almost 7 years, it's inconceivable to me that Aubrey can't speak.  That she will go her whole life having never uttered the word Mommy.  That she isn't potty trained, still struggles to feed herself, can't dress herself, that her 2 year old brother is light years ahead of her developmentally.  And we don't know WHY.

And I know.  You don't have to tell me.  There is all kinds of unexplained suffering in this world.  So many terrible things happen to people, and there is never a reason why.  But that doesn't make me feel better.  And it doesn't make me feel better to say the reason for her challenges is so she can teach us.  So we can learn from her.  blah blah blah.  It's not cutting it anymore.

What it really boils down to, is that Aubrey and Charlie are my whole world.  It's my job.  And the job of being Aubrey's caretaker isn't ever going to end.  Its always going to be me and Matt, but mostly me.  And I just want to be able to make some sense of it all.  I don't think I'll ever stop wanting to know why.

But, here we go again.  On another nice long break from searching.

Magic in the Ordinary

Today, I felt so happy I could burst.  I think it was a combination of things that led to my bliss.  The PERFECT weather, a nap, and Charlie...to name a few. 

Oh, that Charlie boy.

This morning we went to Harmons, and as we were walking from the parking lot to the store, he pointed his finger at the building and said "Castle!"

In the car on the way home, he said the name of every sesame street character in his book.  "Cookie!  Ernie!  Emmo! Zooey!  Bird!"

When I was cleaning him up after lunch, I said "Well, what should we do now?"  And he said "Dance!"  So, obviously we did.

I don't know if I can adequately express the joy I feel in my heart every time he speaks.  When he calls me Momma, or calls blue crayons "boo-berry", or asks for his blankie, or brings me his ball and says "catch!"  It still feels like magic, every time.

Obviously it is all made so much sweeter because After 6 years, I have still never heard those words from Aubrey.  Aubrey and I communicate in our own way.  And over the years she has learned to say so much without verbalizing.  But it is still fraught with so much frustration and work.

But today, as we went about our day, doing nothing special...it all just felt SO special.  It is such a gift to have these simple moments of motherhood that don't feel like work.  It fills me up.  These small magical moments fill me up, and prepare me for the times when being a mother also means being a speech therapist, an occupational therapist, and a physical therapist.

I am so thankful that I get to experience both.  My children are incredible, and they make me better everyday.

Slacking

Well, I am just becoming a major slacker about writing.  Oops.  I miss writing.  Almost every night when the kids are in bed, I sit down and try to write.  But then I just can't.  I don't know why.  But it's driving me crazy. 

Sometimes I feel like I have a lot to say, but then it doesn't feel important.  Or it feels too important. 

But while I sort that out, here are some cute pictures of Aubrey from her first day of school.

I'm not afraid to say that I love having Aubrey in full day school.  It has completely changed my world, and been such a good thing for all of us.  Aubrey loves school so much.  I am so happy to see her at the end of every day.  And Charlie and I are living a much more peaceful, calm, stress-free life.  Everyone is winning.

More to come soon.

Hopefully :-)

St. George and Zion

A few weeks ago, Matt and I decided we needed a weekend getaway.  We haven't gone anywhere since we went to Florida when I was 7 weeks pregnant with Charlie.  And spring time is glorious in Southern UT, so we decided to head on down.  Those red rock were calling us.

We decided to bring Charlie with us because he still nurses and because I wasn't ready to leave him for a weekend.  And because he isn't ready either.  But we left Aubrey here with her grand parents.  That wasn't an easy decision...but we really needed it.  Matt and I wanted to hike, which is something Aubrey can't do...plus any type of change is incredibly challenging for Aubs.  She would have been miserable, and so would we.  We will travel with Aubrey, but it is going to be something that will have to be carefully planned out and prepared for.  We may even need to bring along some extra help.  A spontaneous weekend trip just wasn't gonna work for her.

Even though I spent a lot of time feeling guilty about leaving her behind, we had a GREAT time...and Aubrey had a fun weekend too.

Charlie took all his naps in the car, which has made for a tricky adjustment since being home.

 We stopped at a super fun park in Cedar city to break up the trip a little bit.  Charlie got really restless in the car.

 Swimming was the first order of business once we got there.  Charlie wasn't a big fan...probably because he is used to his nice warm bath water!  I know he'll love it some day.

 The next day we drove to Zion National Park to do some hiking.  When I told Matt that we should go to Zions, he said "Why don't we just hike in St. George?"  I told him I wanted to see something so beautiful it would take my breath away.  So that settled that.  And man, my wish came true.  Utah is so stunning.

 Charlie loved this little backpack carrier that we borrowed from Matt's sister, Katie.  I mean, he never whined, cried, or fussed once!  He just rode along and jabbered and hummed.  And the few times we took him out to explore...after a few minutes he would try to climb back in the carrier.  It was awesome.

 

The only rough part of the trip was sleep.  Man, I've never been so exhausted on a vacation before.  Charlie had a tough time sleeping in the hotel room, and was up several times a night.  One night I was so tired I brought him into bed with us (thank goodness it was a king), and he slept and kicked and smacked me all night.  It was totally worth it though.

I think my favorite part of the trip was just watching Charlie take everything is stride.  Matt and I were constantly amazed at how well he handled everything.  From the change in his schedule, to eating at restaurants all the time (something we rarely do as a family), to missing naps, and hiking, and being in the car and having his diaper changed in weird places...he was just such a trooper.  

All along the way, we couldn't help but talk about how easy it was in comparison to how difficult things like this are with Aubrey.  We felt guilty about enjoying the ease of it all so much.  But we were also so thankful for the respite.  We've been living life in such a way for so long, that I think this is the first time we really realized just how different life is with Aubrey.  It was easy.  And pretty much nothing in the last 6 years has been easy.  So, we missed her like crazy and thought about her a lot.  But it felt good to just breathe for a few days.

Little Bits of Life

-I am chomping at the bit to get on an airplane.  It doesn't even matter where the airplane lands.  I just want to go.  I need an adventure.  Preferably an adventure near the sea.  I will be heading to Seattle in a couple of months, hopefully that will do the trick.

-I have very slowly been weaning Charlie.  He is 15 months old.  I never would have thought that I would nurse this long...long enough for him to be at the point where he can ask for it.  Aubrey weaned herself when she was 9 months old, so I have never done this before.  He seems ready.  But am I?  I'm not sure we'll have another baby, so this might be it?  It's hard to let go.

-Speaking of nursing.  Charlie is down to 2 times a day.  But I have still been eating like he nurses 8 times a day.  Which equals me weighing more than I ever have in a non-pregnant/postpartum state.  I feel so disgusting.  So I am on a diet.  (I know, eye roll)  Basically, I'm not eating any white carbs or refined sugar.  And smaller portions.  I'm hoping that coupled with at least 2 miles on the treadmill every day will do the trick.  (P.S. I get one cheat day a week)

-Matt is finishing up his current project at work.  For the last 3 years his company has been building the college of Pharmacy at the University of Utah.  The building is incredible.  Very state of the art.  I'm really proud of the work he has done there.  It hasn't been an easy project, and he is quite relieved to have it be over.  I will post some pictures soon.  Jacobsen has just assigned him to a new project, and he'll be the project engineer for the building of the DoTerra Essential Oils campus in Pleasant Grove.  He's very excited for a new project and a shorter commute.

-I've been listening to This American Life while I'm on the treadmill.  Really, what has taken me so long?  Matt has been listening to that show for years.  Now I'm obsessed.  Who needs up beat music to work out?  Just give me Ira Glass talking about the public schools in Chicago, and I am set.

-Aubrey has her first loose tooth.  My girl is growing up.  It has been making her drool more than usual and have a harder time eating.  She constantly has her fingers in her mouth.  I'm certain that one day it will just come out while she's eating or something.  I hope it isn't traumatic for her.  We talk to her about it, but she has no idea what's going on.  It's so strange to watch her little body growing and changing so fast, while her mind and personality are seemingly frozen at such a young age.  I wish I could freeze time for her body too.

-I have found a few new songs that I am loving.  Here.  Here.  And here.  New music makes me seriously happy.  Do you have any suggestions for me?

6

We celebrated Aubrey's 6th birthday last week.  She's so big I can hardly stand it.

I was deathly ill during her birthday, but I still managed to make a pan of rice crispie treats for her to take to school for a birthday celebration.  On the evening of her birthday we had planned to go to Ikea (one of Aubrey's all time favorite places) as a family.  I was too sick to stand up for 5 minutes, let alone walk through the monstrosity that is Ikea...so Matt and Aubrey went and met Grandma there.  Matt said she was so excited.  They had dinner and cake, and then let Miss Aubs wander to her hearts content and pick out a few treasures.  She had a great time.

Last weekend we visited my parents and did cake a presents with them too.

We are pretty laid back with birthdays.  Aubrey doesn't enjoy a big fuss.  In the past I've felt guilty about not doing some big friend birthday party for her...but I've learned over the years to make Aubrey's birthday about what she really loves and wants the most.  We eat food that she loves, we do activities that she loves, and she gets to see people who she loves.  And every year I see her so happy on her birthday and I don't feel bad for not doing more.  Doing more would be for me, not for her.

I'm so happy that Aubrey has been ours for 6 years.  Really I know that she has been ours for much longer.  Aubs is growing up in a lot of ways.  She goes to school everyday, she has "jobs" she does around the house (letting the dog in and out, putting her cups and plates in the sink), she is an incredibly loving sister and always tries to help Charlie.  And in many ways she is still my baby girl.  She still wants me to rock her and sing her songs.  She still likes Matt or I to lay with her for a while when she goes to bed.  She still totes her blankie around the house and sucks on her fingers for comfort.

Aubrey is not a typical 6 year old in many ways.  But you know what?  She is my very favorite girl just the way she is.  Everyday her smile and giggle light up our home.  Her endless hugs and affection soothe me when I'm worried or stressed.  I am thankful that she is not a typical 6 year old.  Because then she wouldn't be my Aubrey.  And I love my Aubrey.  Forever.

I Hope

Have you ever stopped to consider what a gift it is to be able to speak?  To communicate your thoughts, feelings, frustrations, joy, or pain?  Stop and think about the things your kids say.  What they want to eat, wear, do.  What they dreamed about at night.  Questions, questions, questions.  What they did at school, who their friends are, who hurt their feelings, what things they love or hate.  How they feel, physically.

Sometimes I forget.  I forget how much Aubrey sacrifices in her inability to speak.  Usually it takes something like her being sick to remind me.  Those are the times I wish the most that she could tell me how she feels, what helps and doesn't help.  What I can do to help her feel better.  We do a lot of non-verbal communication, but it only goes so far.

This usually results with me giving her a dose of Tylenol just in case she hurts.  Letting her take an extra long bubble bath at bedtime, because there is nothing a bubble bath can't cure.  Sitting outside her bedroom and listening to her cough, wondering if I should go in and give her a drink of water or just let her sleep.  I check her teeth everyday to see if any of them are loose.  I have her wear slippers in case her feet are cold.  I slather her with lotion in case her skin feels dry and itchy.  I try to cover my bases, I try to think of everything, I guess a lot and hope that I'm not missing something.

Sometimes I think about how challenging life is for Aubrey, how much she misses out on, and I wonder how she ever smiles or laughs.  But she does.  A lot!  She is teaching me an awful lot.

I struggle with faith.  After almost 6 years of life with a special needs child, it's hard not to.  But I hope.  I hope that someday when this life is over she will sit down and tell me everything.  I hope she will tell me every time that she was happy, or sad.  Her favorite memories.  I hope she will tell me about the times when I messed up, when she was mad at me, or when we got things right. 

And most of all...I hope she will tell me that we did enough.

Choices

One of biggest challenges that Aubrey deals with is an incredibly short attention span.  It makes everything difficult for her, for us, and for her teachers.  At every IEP (individul education plan meeting with teachers and therapists) it is the topic most discussed.  Her inability to atttend to anything for any length of time effects every aspect of her life...from meal time, to potty training, to class time, and church.  She cannot sit still.  She cannot focus.  She cannot follow directions.  And it seems to be getting worse.

I can't even really begin to describe how hard this is for us as her parents.  It has gotten to the point where we pretty much don't even take her to sacrament meeting anymore, because she cannot sit down, stop whining, and trying to escape.  So we don't go as a family most of the time.  Matt and I take turns going with Charlie while the other stays at home with Aubs until it is time for her to come Primary.

We have always been reluctant about trying medication.  Always.  We always thought (hoped, prayed) that there would be a better way.  But sometimes...you reach the end of your rope, and desperation sets in.  And unfortunately, that is where we are. 

So, for the past few months we have been talking with Aubrey's pediatrician, and researching options for ADD medication in hopes that we could find something that would help...even just a little.

A few weeks ago, we started her on a medication.  We were nervous.  Scared of side effects.  Worried that it wouldn't help.  Afraid of losing any part of Aubrey's sparkle.

On the first day we watched her like a hawk.  And it helped.  I noticed small differences throughout the day.  She sat easier for her meals.  I wasn't repeating myself over and over and over again when I gave her directions.  The differences were subtle...but they were there.

And then?  Then she didn't sleep at all for 28 hours.  We put her to bed that night...and she never went to sleep.  Finally, the next day the medicine left her system entirely and she just crashed.  It was horrible.  So we called the doctor and she suggested we try cutting the dose in half so see if we could still get the bennefits of the medication, but still allowing her to sleep.  Well, it didn't work.  She was able to sleep, but there were no improvements in her attention.

And so, these are the choices we make.  Medicate to help her focus at home and school?  Or don't medicate, but allow her to have an appetite and sleep at night?  For us, we choose quality of life.  Aubrey already has so many battles to fight.  So much is asked of her already.  She lives a life of constant frustration.  There are so many things she cannot enjoy, and experiences she will never have.  The least we can do is let her eat and sleep.  Right?

Experiences like this can be so discouraging.  It is almost as though every time we try something new, we hold out hope that this could be the miracle that we've been waiting for.  The pill that will improve her attention span.  The therapy that will help her start talking, the specialist that will help her potty train.  Sometimes I wonder, at what point do we stop being hopeful?

I am so weary.  I feel old and tired.  Every morning when I wake up, I feel like I am preparing for a battle that will never end.  And sometimes the only thing that gets me out of bed, and keeps me going, and keeps me hoping, is the desperate love I have for my daughter.  It is what I wake with, it is what I sleep with, it is what holds me together on days when I think I might break into a million little pieces.  And it is behind every choice I make.

In The Book

 One day, I'm going to write a book.  Sometimes when I can't sleep at night, I lay in bed and outline chapters in my head.  It will be a book about raising a child with special needs.  A memoir/educational tool for other parents.  Or maybe I won't write it for anyone else but me.  But I will write it, because important lessons are being learned, and I have stories to tell, and someday I want to look back at this adventure and see how it has forced my growth.

Someday, when I write that book, there will be a whole chapter about resentment.  Especially for people like us who have no diagnosis to work with.  How we struggle to fight against it day after day, but it slowly comes creeping in.  Like while trying to find somewhere private to change a five year old's poopy diaper at some place like the beach.  Or when attempting to feed yourself lunch, at the same time as feeding your baby...and your five year old, who still hasn't quite mastered the skill of using a fork.  I will write about how battling those seeds of resentment is a constant exercise in mind control.  And about begging doctors for a diagnosis, just so you can have somewhere to place the blame.  Just to be able to say, "This is happening because of x,y,z."

And in this book, there will be a chapter about coming to terms with the fact that sometimes just getting through something makes it a victory.  About how I feel like a super hero after every outing, every IEP, every Sacrament meeting.  About high fiving Matt after we left the zoo, because damn that was hard, and I don't ever want to do that again, but we did it.

There will be a chapter about the people around us who make it so much easier.  The grandparents, cousins, aunts and uncles, and friends who save the day from time to time.  I will write about them all.  And how we have wild dreams of moving to far off places, but we know we will never go...because we could never do without them, and neither could Aubrey.

Someday, when I am brave, I will write about what having a child with special needs does to a marriage.  And what it does for a marriage.  How it can easily be the undoing of a couple who aren't taking care of their relationship, and treating it with tenderness.  How we are the lucky ones who have grown closer as a result of it, and have learned how to take care of each other when it all feels like too much.

In the years to come there will be more lessons learned, more stories to tell, more victories to claim.  I'll store them up and keep them safe, and one day I will have the satisfaction of putting it all together.

Aubrey The Kindergarten Queen

Today was the big day.  Aubrey started Kindergarten!  

I would be lying if I said I was sad to see Aubrey start Kindergarten.  A lot of moms get really emotional when their kids start school...which I totally understand.  But school is a really great thing for both Aubrey and I.  Aubrey loves the structure, routine, and social aspect of school.  And because Aubrey is such a demanding and often difficult little munchkin, school provides me with a much needed break.  It really is a win win!

Miss Aubs is not attending a typical Kindergarten.  She is going to a special ed. school about 5 minutes from our house.  We have been able to tour the facility, meet her teachers and therapists, and some of the administration, and so far we are really impressed with the services that are available there for her. 

Aubrey's teacher sent home a note detailing how the day went and the different things they did.  She said that Aubrey was happy all afternoon, and was excited about everything they were doing.  I knew she would love it!  And while she was gone, Charlie and I did some shopping and cleaning and napping.  I think we will settle in to this half day routine very nicely.  I'm proud of Aubrey for being a brave girl, and handling new things like this so well.  I'm so glad she loves school.

Name Them One By One

I imagine that I will experience this feeling many times over the coming years.  And maybe someday it won't impact me as much as it does now.  But right now?  It feels kind of incredible.

You see...Charlie is starting to get around.  He is in the early stages of crawling.  It just happened.  Today!  Pushing up on those hands, and toes.  Sometimes up on his knees.  And scooting himself.  Sometimes backwards, and sometimes forward.  Always toward something he wants to reach and put into his mouth.  I think it's called army crawling.

I know, I know.  It's what babies do.  Big deal, right?  Well, yeah.  It's huge.  It's a miracle.  And I tell you what, when I watched Charlie push up on his hands and knees and scoot himself across a blanket to reach a toy today, tears sprung to my eyes.  And I thanked God for allowing me to witness something so special.

Because we've never experienced something like this before.  Something so effortless and natural.  Gross motor development that didn't require months/years of physical therapy, prayers, tears, and fears.  It just...happened.

I remember when we were in the throws of Aubrey's physical therapy.  She wasn't walking yet.  Things were very hard.  One Sunday when we were at dinner with Matt's family, Matt and I stood together in the back yard and watched Aubrey's cousin (who is three months younger than her) hold on to the sides of a slide and walk up it.  And we both just looked at each other and shook our heads in amazement.  Astonished at the feat he had just accomplished.  At that moment, I knew that I would never look at another "typically developing" child again, without totally understanding the miracle of such a thing.

So today when Charlie scooted around on the floor I called Matt, and we celebrated.  Everything that Aubrey has accomplished is incredible because of everything that she has to fight against to accomplish it.  And everything that Charlie is accomplishing is incredible because the ease with which it is accomplished is truly a blessing.

Either way you look at it, these two kids are incredible.  Today we count our blessings.

Labels

We were working over at the new house this afternoon, when one of our new neighbors came by with her daughter to introduce themselves.  We stood on the porch and visited for a while, and before we knew it there were about 8 or 9 kids in our front yard to meet us.  It was great fun, and Aubrey was in heaven.  It made us even more excited to move!  Our new neighbor let us know about a neighborhood party that was happening the next street over later that evening, and invited us to come.  We were really looking forward to getting to know the people in our ward/neighborhood so we decided to go.

One of the only things that has made me nervous about this move was starting over in a new place with Aubrey.  We have lived in this ward for almost Aubrey's whole life.  She was not even crawling when we moved here.  And for all intents and purposes, the people in our ward have taken the journey of understanding and raising Aubs right along with us.  They know her, and understand her, and love her.

But how to start new?  How do you help people understand your special child, especially with no diagnosis to help explain?  How to help people understand that she is different, special, and unique?  She is just Aubrey.

So, off to the party we went.  We met lovely, kind, warm people...and they welcomed us with open arms.  After mingling for a while, our neighbor's daughter took Aubrey over to a swing set to play.  It was crowded, and crawling with wild, rambunctious little boys.  Sure enough, after only a minute Aubrey was hurt and crying.  After making sure that everything was alright, we stayed close to make sure she didn't fall again.

As I stood by, I overheard some little boys having a conversation about Aubrey.  "Did you know that she can't talk?"  "Yeah, I know that.  She's my new neighbor."  "Yeah.  She's handicapped."  "I know.  Handicapped means that you can't talk."  "But I wonder what makes her like that?"

"Me too" I thought, to myself.  At that point I decided to walk away and let Matt stay with Aubrey at the swing set.

It took all of ten minutes before Aubrey was labeled.  Handicapped.  I know that these boys did not speak these words to be hurtful.  They were not trying to be unkind.  They just don't know the right words to say.  And that's ok.  Sometimes I don't know the right words to say either, and I'm a grown-up.  And besides, handicapped is not a bad word.  It's just a label.  And yet...sometimes labels can hurt.  Not necessarily the word itself, but the act of being labeled.

I sat down with Charlie, and I looked around, and I wondered why I felt so sad.  And I think it's because I know that I carry the label too.  Because when we meet new people or go somewhere new I want for people to know that I am Megan, and my husband is Matt.  My daughter is Aubrey, and my son is Charlie.  And I want them to get to know us.  I want them to know me.  And instead, the first thing anyone ever knows about us is...that is Aubrey, and she is disabled/handicapped/challenged/different.  And that is Megan...she is the one with the disabled/handicapped/challenged/different daughter.

I wear that label proudly.  Because Aubrey is the most amazing human being I have ever known.  And I believe that being Aubrey's mother is the greatest calling I have been given.  But it is still a label that I am getting used to carrying.  And to tell the truth, being Aubrey's mom has affected friendships in my life.  Some have stuck close, and embraced the challenge.  Others drift away when our circumstances don't make things easy or convenient.  But that is neither here nor there, I suppose.  It just stays in the back of my mind whenever we meet new people.

I guess I just have to believe that in time, the people in our new ward/neighborhood will get to know Aubrey for who she is.  The girl with the big smile, and big laugh, and big heart.  The girl with bouncy curls, tight hugs, and a strong testimony.  And the girl with the awesome mom!:)  And then, the labels will melt away...because there will be no need.  They will know that she is just Aubrey.  And they will love her.  Because, how can you not?

The Graduate

Aubrey graduated from preschool!

We had such a great time at her graduation program today.  Matt was able to take the morning off, and both my mom and Matt's mom, and Aubrey's cousin Ayva were able to come.  Aubrey was so cute and SO excited during the whole program.  When all the kids were walking in with their little graduation caps on...we could hear her laughing and giggling before we even saw her.  She was full of smiles the whole time.  We are super proud of her, and everything that she accomplished during preschool.

Next year Aubrey will be attending kindergarten at a school for special needs children.  We went and had a tour of the school a few weeks ago...and it is amazing.  We think she is really going to love it there, and we know she will be provided all kinds of opportunities and services, that would otherwise not be available to her in a traditional school.

At the graduation ceremony they handed out a little poem that I thought was really sweet, so I thought I would post it here.

Heaven's Very Special Child

A meeting was held quite far from Earth.

It was time for another birth.

Said the angels to the Lord above-

"This special child will need much love.

Her progress may be very slow,

Accomplishment she may not show.

And she'll require extra care

From the folks she meets down there.

She may not run or laugh or play,

Her thoughts may seem quite far away.

So many times she will be labeled

'different,' 'helpless' and disabled.

So let's be careful where she's sent.

We want her life to be content.

Please, Lord, find the parents who

Will do a special job for you.

They will not realize right away

The leading role they are asked to play.

But with this child sent from above

Comes stronger faith, and richer love.

And soon they'll know the privlege given

In caring for their gift from heaven.

They're precious charge, so meek and mild

Is heaven's very special child."

-Edna Massimilla

Later that day when Matt and I had a few minutes to talk about Aubrey's graduation program, we both agreed that it was a really fun experience.  Then Matt said, "The thing I really took away from that whole program was that there really is no one else like Aubrey.  She is absolutely one of a kind."  He is so right.  And while that can make life extremely hard sometimes...it can also make is totally awesome :)  We are so thankful for our very special, one of a kind girl.

About Aubrey

 Good things are going on in Aubrey's little world these days.  A lot of little things that add up to big time happiness for us all.  She is right in the middle of a huge learning phase.  We have learned over the years that Aubrey seems to progress in spurts.  She will go for a really long time and not really make any progress in any area of development, and totally fight us and anyone else that is trying to teach her things.  Then, all of a sudden, BAM.  She decides she is ready, and she starts doing a bunch of new things all at once.  This little girl is definitely on her own schedule.  But even her teachers and therapists at school have commented on how hard she is working right now.  It's a very encouraging time!

First:  Aubrey knows the entire alphabet, and can identify all the letters when asked.  She points to letters everywhere.  On signs, in books, on food labels, magazines, clothing, etc.  She is really interested in letters, and she really wants us to know that she knows them.

Second:  Aubrey's horse back riding lessons have been amazing lately.  She is working so hard at communicating with her helpers, and with her horse.  She has totally mastered signing "stop" and "go".  Her balance is amazing, she adjusts herself on the horse without being asked, and she completes every task she is asked to do without any complaint.  They have even started letting her trot every once in a while, and even though her low muscle tone makes her somewhat floppy...she holds on tight to her reigns and handles it very well.

Third:  In the last 2 weeks Aubrey has started babbling.  You guys, I don't think you even realize what a huge deal this is.  Aubrey has NEVER babbled.  Not even as a baby.  Sure, she makes expressive oooh and aaah sounds, and there was a period of time when we could coax a rare "ba ba" out of her...but consistent babbling with consonants?  Never.  Never!  And then one day a few weeks ago she woke up and was like "da da da dee dee dooo dooo da da deee deee" ALL DAY LONG.  And I was like "WHAT?  When did you start doing that?"  And now every day, all day long (literally from the moment she wakes up until she goes to bed at night" she walks around the house going "doo da dee da doo dee dee da".  And I know...I KNOW she is talking to me.  She looks me in the eye and she makes these sounds and I know she is telling me things.  She will point at something, then look up and me and babble, and then wait for me to tell her about what she is pointing at.  She babbles at the t.v.  She babbles at Stella.  She babbles to Matt when he walks in the door after work.  She babbles while I read her books or sing her songs at bedtime.  It is the most beautiful sound I have ever heard.  And it gives us so much hope!  Hope that someday those babbles will turn into a "Mommy" and a "Daddy".  I pray that she keeps going.  That she never stops.  And I swear, that as long as she is trying to communicate with us, I will never tell her to be quiet or to hush.  I will let her interrupt every conversation I have for the rest of my life if it means I can hear what she needs to tell me.  We have gone for 4 1/2 years with a silent (sometimes whining) child.  We have dealt with the fear that she may never speak.  And now we can hear her voice in ways that we never have before.  And we cannot wait to see where she can go from here.

One thing is for sure.  Aubrey can never be underestimated.  She is capable of so much more than we know!  And when she is ready, she will blossom and bloom, and the sweetness of her spirit and the light in her soul will be expressed in ways that we only ever hoped for.  Just wait and see.

A Good Day

(photo courtesy of my brother, Matt)

Our morning started out a bit rough.  I was worried that it was going to turn out to be one of those days.  But it didn't.  Not at all.

Aubrey kept her pull-up dry all day.  Even when she was at school.  She never put up a fight about going potty.  Not once.  I think it has something to do with the Dum Dum suckers I give her after every successful potty trip.  By the way, she looks really cute when she eats a sucker.  But I have to follow her around with a wet wipe until it's gone...else there will be stickiness on every surface of our home.

Then, when Aubrey came home from school (she rides the bus both ways now...and loves it), her bus aid told me that Aubrey has a friend on the bus.  A friend that can't wait to sit next to her.  A friend that asks about her, talks to her, and holds her hand.  We have been praying for Aubrey to make a friend or two at school.  It makes me so so happy to see other kids embrace her.

At bath time I tested her knowledge of the alphabet using those foam bath tub letters that stick to the wall.  I would hold up 2 letters at a time, and then ask her to identify a certain letter.  "Aubrey, which one is the letter P?  Which one is the letter S?  Which one is the letter Z?"  We went through the whole alphabet.  She got 95% of them right.  Ummm...WOW!  I was amazed!  We have been talking about letters a lot, and she learns about them at school, but I had NO idea that she could actually identify almost all of them.  It was so exciting!  And it seemed so easy to her.  Like in her head she was thinking "Duh, Mom.  I've just been waiting for you to ask me."

Then to top it all off, she was fast asleep in her bed by 7:15.  It turns out, this whole no daytime nap thing is really working in my favor.

I just had to record the awesomeness of this day.  So often Matt and I will get caught up in the lack of progress we see in Aubrey.  It is so easy to be frustrated about all the things she can't/won't do yet.  We get so bogged down by the amount of time it takes to teach her something.  But every once in a while when we really open our eyes and look at our daughter, and see with clarity the gifts that she possesses, and the skills she is acquiring despite the challenges she has to overcome...we are astounded.

And there are simply not enough words in the English language to describe the gratitude we feel.

Aubrey and Horses

 Miss Aubrey just completed her first session of therapeutic horse back riding, and we a so very proud of her.  She had 12 lessons, and made huge progress from the first lesson to the last.  When we first made the decision to pursue this for Aubrey, we weren't expecting any miraculous outcomes.  We didn't think that after 12 weeks she would be speaking in sentences or riding independently.  We chose to do this so that she could have the experience of it.  We wanted her to have the opportunity to participate in something special that she could enjoy and that would make positive memories for her.  Any other skills she might gain from it would be considered a bonus.

Well, we were not disappointed.  This has turned out to be such a wonderful experience for our Aubs.  In the beginning she had a lot of anxiety about it.  In the end she would squeal and giggle with delight the instant we pulled up to the barn.  And she always found comfort in her horse, Torgan.  By the end it was so sweet to see the way she loved on him.  Whenever she was being asked to work or do something hard, or something that made her uncomfortable, she would reach forward and pet her horse's mane.  It made her feel better.

We may never know the specific benefits that Aubrey will receive because of these lessons, but I like to believe that she has gained confidence in herself, that she is learning how to trust others, and most importantly she is learning how to work through challenging things.  I would like to think that this experience made her feel special.  Because she is so so special.

I also have to mention the wonderful people who work at Courage Reins...most of whom are volunteers.  They have been such a treat to work with, and clearly care about the work they do.  And as a mother, I find great comfort in adding caring people to our "team".  And that is why we have signed up for another session this fall.

Smiles like that are why we will keep going back.

Finding My Way

For the most part, I feel that I (we?) have made peace with Aubrey's challenges/differences.  To us she is just Aubrey.  And we are so used to who she is, and find so much beauty in who she is that we aren't phased by the things that make her different from other children.  We know her, and love her as she is.  But some times, some days, it's as if my heart cracks wide open and out pours all the sadness, pain, and fear that often accompanies the heart of a mother with a special needs child.  And when that happens, it is powerful enough to knock me off my feet.

Sometimes I wonder if that will ever go away completely.  Will there ever come a time when I won't mourn for the opportunities that she misses, or feel pain for the lack of communication?  Will I ever be able to suppress the crippling anxiety I have when I think too hard about her future?  I don't want to have these days of intense pain.  Even though they don't happen often...I wish they would never happen at all.

But through it all, Aubrey remains the same bright beam of sunshine that she has always been.  That is how I always find my way out of the darkness.