some days...

there are so many things in my life right now that are beyond my control.

it's maddening!

it's the hardest thing in the world to try and let that go.

to just let things be.

to just be.

especially when i want to control it all.

things with my sweet boy, i wish i could just have some sort of sense of control over anything when it comes to him and his life and his pain and his struggles.

with my own personal life.....

also filled with so much i can't control.

some days it just feels like a lot.

some days it's just magnified.

some days it's just hard.

some days it makes you want to just scream.  

or cry.

some days you do both.

 

i remember waking up and seeing every hour on the clock last night except for 4.

rough night for my sweet boy.

but he looks super handsome today, can't even tell he didn't get his beauty rest.

he's had one 'episode' today.

we can't wait until thursday for our appointment!

 he just loves taking pictures with mommy....can't you tell?

i got a kiss in before he whacked me in the face.

:)

usually he sticks out his tongue to signify 'yes'.

more kisses from momma?

yes, please!

mommy loves you, you beautiful boy, you.

<3

happy Sunday :)

we've got our fancy-pants on and are ready to roll.

my beautiful boy is looking rather sharp today, i do believe.

 we love Sundays!

it really looks like he's sticking his tongue out on purpose to try and be funny.

:p

this is my whole world right here.

sweet kisses for our favorite boy.

and one for my favorite girl.

one last snuggle before church.

aubrey and i picked a little bouquet when we got home.

simple bits of joy.

happy Sunday.

<3

tulips make me happy.

today was our church's ward service day.

people in our ward at church got together and went to several houses to do yard work.

my house was one of the 'chosen ones'.

i can't tell you how blessed i feel to have so many people looking out for me, willing to help and do whatever they can.

i felt so bad i couldn't do more to pitch in and help, it's a hard thing for me---to accept help.

but i am so grateful for such kind people.

(and my yard looks so pretty!)

so thank you!

i went outside to see how beautiful it looks and started taking pictures of my (or Aubrey and Papa's) tulips.

 i absolutely love these tulips.

they make me so happy.

 they form a little heart around the tree.

<3

every day when i pull into the driveway and see the tulips it just makes me smile.

 i love them because Aubrey and Papa plant them together.

 i love their pretty colors.

i love them most when they're not all the way closed, but not yet open fully.

they just bring me little bits of joy every day.

yay for tulips!

<3

episodes

my sweet boy.

the tooth fairy visited him last night.

maybe he saw her because he was up so often...

he's had more of his 'episodes' today.

it's as if his airway is closed and he cannot get air through.

this makes him scared (this breaks my heart) and so his breathing becomes more shallow and frantic.

suctioning doesn't really help.

holding him close and tight are the only things i can do, just waiting for him to calm down enough to let some air through.  

i don't want him to feel scared, i just tell him to breathe....breathe....

i can't wait for our appointment next thursday.

i'm just praying there's something they can see that they can fix.

while i was waiting in the van to pick up aubrey and her friend from school, connor's 'song' came on----the tarzan song.

i rarely hear that on the radio anymore.

tears came and i just sat and looked at my beautiful boy.

i just love him so much.

it hurts.

<3

connor's tooth is out!!!!

he lost his first tooth!!!

(well, technically he didn't lose it...i pulled it out because i was so worried he would swallow it and it would go into his lungs)

but it's gone, his first tooth!

it such a teeny tiny perfect little tooth.

i still can't believe he met this milestone on time, before his sister.

she's so happy for him, she couldn't wait to see where the missing tooth was.

and now the tooth fairy needs to remember to come!

i haven't experienced the whole tooth fairy business yet.

i just remember when i was little and was so excited for the tooth fairy to come, i put my tooth under my pillow and went to sleep...

the next thing i remember was being woken up by my sister, flapping her arms (wings) and saying "i'm the tooth fairy! move your head so i can put money under your pillow!"

:)

since connor doesn't have a pillow i think the tooth fairy will have to improvise a little bit.

i love my little boy so much.

i hope he feels ok with having one less tooth.

i'm not sure if another one will come in or not because of how his top ones never came in and the other molars only came though a little bit.

so i guess we'll just have to wait and see.

i love my toothless beautiful boy.

<3

trying to get outside my head today.

there are so many things going on inside my head all the time, lately more than usual i think.

i stress and struggle with things about myself.

and then i stop and think, why am i worrying about this trivial little thing when my son is going through so much more?

........

 and then i feel bad about that.

which causes more stress and guilt.

but i'm trying to just let some things go, trying not to think about all those things about myself that are constantly in my head.

this is harder than it should be.

one thing that always helps...

 it doesn't get much better or simpler than this.

<3

 

today i'm a bit on edge.

i'm more stressed and anxious and emotional today.

not really sure why, exactly.

just one of those days i suppose.

connor has been having such a hard time breathing lately.

and not just his typical hard time, in the last week he's been doing some new things that i haven't seen before.

new is never usually good.

 he had an 'episode' while my dad was here that i had never witnessed before.

and his teacher told me today at school he was breathing differently (worse) than she'd seen before.

i'm pretty sure it's his muscles in his throat, they are just weaker and collapsing into his airway again, and because of his worsening muscle tone they are not able to open up easily to let air through.

it's just scary when you see something new that isn't good.

he sees the pulmonologist on May 2nd.

he'll have a scope done of his airway to hopefully see what's going on and if it can be helped at all.

i just love him so much.

that's why i think his loose tooth yesterday came as such a shock to me.

really, it was the first milestone he's ever met on time (and before his sister even!)

i don't pay much attention to reaching milestones or at what age he should be doing what, i haven't for so many years.

i just love him every day.

so when a loose tooth comes along it really jolts me out of what i'm used to, i guess.

it's bittersweet to see his body do something so normal, so on time, when most of the rest of it is degenerating in some way. 

if any of that makes sense.

it's all jumbled up in my head.

and that's how i'm feeling today.

<3

oh my goodness!

connor has a loose tooth!

i was holding him just now, talking to him and kissing his little face when i started looking in his mouth and noticed one of his bottom teeth was crooked.

it had never looked like that before so i touched it and it's loose!

it's the bottom front right one. (or his left)

i don't know why this is so shocking to me!

i guess i never thought about him loosing teeth.  since his top two teeth never came in and his other ones only kind of halfway came in i guess i don't really think about him having these normal milestones with teeth.

it's also funny because aubrey still hasn't lost any or even had any that are loose.

i just showed her connor's and she said "no fair!! now i'm the only one left in the neighborhood who hasn't lost any teeth!"  

hee. hee.

and now i'm just terrified it'll come loose without me knowing and he'll swallow it....

:/

he keeps pushing it with his tongue.

this brings me joy.

i can't tell you why, but it just does.

my little boy is growing up!

this is a special day for him.

first loose tooth. 

can't really believe it.

:)

happy Sunday!!

 

another fancy-pants picture time extravaganza.

love. love. love.

 here come the kisses.....

mwah!

quick!  pretend you're sleeping! 

i'll let you guess which one of us wasn't pretending...

today was also my first Sunday teaching a lesson in Young Women's at church....

 i was SO nervous!!!

(i think it went ok, well i hope so at least.....all i know is that is over and i survived!)

connor was there with me to help me throughout the lesson.

it really is comforting having him by my side.

(or in my lap, in most cases, like today)

 aubrey thought she was being so funny in these pictures----trying to 'photo bomb' us..

oh, she makes me smile.

:)

 when we came home from church we were greeted by our tulips who had finally opened up!

 every year in the fall Papa plants more tulip bulbs with aubrey.

so she's always so excited for the first blooms of Spring.

 she's so proud of her and Papa's tulips.

(she's trying to hug them)

my favorite flower.

my favorite girl.

time for a few last snuggles and pictures before we change out of our fancy pants.

my sweet boy.

my favorite boy.

<3

raise your hand...

most of the time, because he can't control his movements, connor's right arm automatically goes straight up in the air.

this happens more when he's really agitated or uncomfortable, but he does it when he's not too.  

he's been pretty agitated today, but he was watching cartoons when i took this picture.

or maybe he just always has a question and is waiting for me to call on him....

raise your hand if you like watching Saturday morning cartoons!

and then he fell asleep.

well, sort of.  

he doesn't really sleep long because he'll wake up when he misses a breath, but this was how he 'slept' for about 5 minutes today.

i kept wondering if he was trying to spell something in his sleep...

give me an L?

he's so cute.

he looks so peaceful in a still picture.

it doesn't show him gasping for his breath every couple of minutes.

but i'm glad he finds these little moments of peace where his sweet little body is totally relaxed.

raise your hand if you're grateful for that.

<3

and now my dad is gone.

:(

he left about an hour ago, and i am sad.

it's been so great having him here.  he helps me out so much, just by being here.

i guess i don't realize how lonely i am most of the time because i'm never really alone.

i have aubrey and am with my beautiful boy always.

but every time my dad comes and then leaves, it makes realize that i am a little bit lonely.

maybe it's more of a home-sickness.

or dad sickness.

i just miss being around my dad, and love having him here as "Papa".

we did have a great week.

he got to experience one of our candle lit dinners.

this time it was candle light for 3 :)

he really is the best man i know.

he got to do some bonding with his Superboy.  

(connor looks so big when my dad is holding him!  i guess he's that big when i'm holding him too, but i still picture him as a little baby in my mind:)

i hope connor feels as safe in his arms as i always have.  

it's the best place to be.

and aubrey.

aubrey and my dad have the most uniquely special relationship.

they have been best buds from day one.

 they are so silly together!!

they spend lots of time just laughing and giggling.

Papa tells her stories every night before she goes to bed.

he's an interesting story teller, to say the least ;)

i love my dad more than anything.

we'll miss you Papa.

too much.

<3