tonight i want to talk about the greatest man i know.  and i happen to be related to him....my dad.  tomorrow is his birthday.  he is in brazil right now, which makes me miss him even more than usual.  or maybe not more, because i always miss him a ton, but further.  i miss him further.  

my dad is my best friend.  he has been there for me through all my ups and downs (and i have had A LOT of downs, let me tell you...)  through everything i have had a constant.  my daddy.  i have put him through so many things throughout the years, i don't know how he has put up with me!  if there's one thing i've learned, it's that i should just listen to him the first time he tells me something......but i guess i had to make my own choices and mistakes so that i could learn from them, right?  (i've done LOTS of learning)

my dad and aubrey, or aubbie waubbies as he calls her, have been best buds from the very beginning.  they have a special connection that i can't quite describe.  

they are so SILLY together!  my dad turns into a kid again when they're together.  i have listened to them both just laugh and giggle to the point where they can't stop. :)

aubrey has a special love for her Papa.

they way they are together reminds me of when i was little, and how i was with my dad.  i'm so glad aubrey gets to see just why i love him so much.

 

although, i don't ever recall him playing Polly Pocket or Fairy Princess with me......we liked games like scrabble and othello (until he quit playing that one because he could never beat me:)

we love it when papa comes to visit us, but we are always way too sad to see him go.  i always want to hang on his leg too and say "no,don't go! please don't go!"

i love it when i get to go home to illinois in the summer.  having aubrey and connor be and play where i played as a little girl is so awesome to me.  i love showing aubrey all the things i used to do when i was little.  if she even notices me----while we're there, she barely remembers i'm her mom.  she's too busy playing with her best pal, papa :)

my dad has been with me every step of the way with connor.  he calls him his 'superboy'. these pictures of connor in the pool are so tender for me to see....he was so thin, this was at a point in time where the doctors weren't sure if he was going to make it very much longer.  my dad is so gentle with my sweet, beautiful boy. i love them both so much.  my two favorite boys in the world <3

papa and his superboy.

this was when we flew out to New York to take connor to one of the top neurologists in the country.  this trip was really hard for me, emotionally, and my dad was such a support to me. i know i couldn't have handled it without him.  he is my rock.

this was just this past june when connor had his surgery to trim the muscles around his voice box, sculpt his pallet to bring it forward, remove his tonsils, and remove his uvula (hangy ball thingy).   he can breathe so much better since having all that done.  my dad watched aubrey for me, which is always such a huge relief---to know she's in such good hands.  (might i note that shortly after this picture, a few days i think, we took aubrey to get her 'short haircut'......my dad's attempts at 'doing' her hair were.....entertaining.)

 

 

 

my dad is the best dad i could ever wish for.  so it's only natural he's the best papa, too.

 i think he's enjoying his role as grandpa, just a little. ;)

i admire and look up to my dad in every aspect of my life.  everyday i try to be a little more  like him.  without him i wouldn't be where i am today, and probably wouldn't even be alive.  i am so grateful for him and for the friendship we have.  best friend i could ask for.  my dad truly is the greatest man i know.

and since it's probably already past midnight in Brazil, i'd like to say happy birthday daddy!  LYMTYLMSITSIB

(love you more than you love me, said it first, said it best)  

<3

something awesome just happened, or something awesome might possibly happen......... my brother just won two tickets to the Pearl Jam concert at Wrigley Field this summer through the 10 Club fanclub.........and he said that if i could work it out that one of those tickets is mine!!!!!   my jaw is still on the floor, hold on while i pick it up.

now, i'm not totally sure if i'll be able to go yet, i have to make sure i'll be in Illinois (which i was already tentatively planning)  and the hardest thing will be being away from connor for that long.  but, with my family all being there, i'm hope hope hoping we can work something out.   or i'll just sneak connor in with us, who can say no to his sweet face, right??

my brother is awesome!  and not just because of the Pearl Jam tickets, he's awesome for many more reasons than that.  but he's exceptionally awesome tonight because this is something i never thought i would be able to do---go to a Pearl Jam concert.  my brother is the reason i started listening to them, i have always looked up to and admired my brother so i wanted to listen to what he was listening to.  (i'm so glad he has good taste:)  and my brother's wife is even awesomer (yep, i just made that a word) for letting me have her ticket.  yippppeeeeee!!!!!!! 

i guess i should postpone the excitement until i know it's really happening for sure.  but even the thought of the possibility of going is beyond amazing to me.....yay for possibilities!!!!

it's been a rough night for my beautiful boy.....he's been really agitated today.  tonight (like most nights) it's only gotten worse.  

his little cheeks get all red from moving around so much, and he has lots of secretions today so it's harder for him to breathe.  it hurts me so much to see this pained expression on his face.  i wish, oh how i wish, i could take all this discomfort and pain away from him.

even when i'm holding him he is still wincing in pain.

 grinding his teeth.........

i know he's in so much discomfort when he starts to grind his teeth.  he's been grinding them all night. :(  

every time i leave the room to go into the kitchen to get his formula bag ready he ends up like this.......in less than 10 seconds he has worked his little body into this position.  i keep the pillows on the side to try to block him in, and also to keep him from banging his head on the floor if i don't get to him quick enough.  his little body gets so rigid and stiff that he just flips himself over, and then his arms get stuck under neath his body.  i love him so much.

so today was exciting because UPS delivered a huge jug of glycerin to my door........

this is exciting because i need liquid glycerin to use in the suppositories i make to give to connor twice a day.

the clear bulb with the orange cap is what i give to him a minimum of 2 times a day in order for him to go to the bathroom.  or poop, can i just say poop?  so at the store they sell a box of 4 of the suppositories and they range anywhere from $5-$8.......and one box last only 2 days.  so i started buying the small bottles of glycerin a while ago and started making my own, which is cheaper but still expensive.  i could never find a bottle bigger than that small one, but when my dad was out here at Christmas time he mentioned that he thought his company distributes glycerin.........umm, come again??!  i have no idea why he's been holding out on us!!  so he talked to some people and was able to have them ship me this huge jug for free!  this is very exciting to me, i can't even tell you.  never thought my dad would be my dealer, but he's got the good stuff :)

that's the good part, i love getting things for free.  the sad part is why i need it...  connor used to be able to poop on his own. but as his disease (whatever it may be) progresses, he continues to lose function of his body.  because he has a progressive brain disease and his brain is atrophying, it effects his whole body, namely the muscles and coordination of movement.  as his brain has atrophied his muscle tone has gotten worse and his digestive system has been greatly effected. i'm not sure when he stopped being able to poop on his own completely, it's gotten progressively worse over time.  it's been years since he's been able to go on his own.  i give him the suppositories, one in the morning and one at night, in order for him to go at all.  and in the past year or so i've noticed he can't even pass gas on his own anymore, he doesn't have the muscle tone or coordination to even do that by himself.  which is really sad, because isn't that what little boys are supposed to do best??  so i help him do that too, by massaging and pushing on his little belly.  it's painful for him when he can't get it out.

it's hard for me to really tell how much function he loses on a daily basis because i'm with him all the time.  but when i think back i do notice a significant loss of certain abilities he used to have.  and that just makes my heart ache.  did i mention i love my sweet boy?

 happy Sunday everyone!

it has been a happy one, indeed. we went to church and today was  a missionary farewell. aubrey drew a picture for the young man that is leaving so she was excited to give it to him, he has always made her feel very special:)

then when we got home, look what showed up at my doorstep!

a guy from church knows how to make balloon animals so he learned to do a penguin for me after reading something i had mentioned on facebook about a penguin showing up on my doorstep.  awesome, right??  maybe i should take a moment now to mention that i often think about Eddie Vedder showing up on my doorstep.........just throwing it out there;)

he also made aubrey a fairy ballerina and ironman for connor.  this made aubrey's day!

we also had a visit from our home teachers, two of our very favorite people.  and then another wonderful friend brought us dinner.  we are SO BLESSED!!!!!!!!!  the kindness that has been shown to me and my two babies lately has been so incredible that i am truly humbled over and over.  i don't think i've ever met so many nice people willing to do so many nice things for us.  i feel so lucky and truly truly blessed to have such wonderful people in my life.  i wish i could reciprocate all the love and kindness shown to me. i always feel like i don't do enough for others, or at least do enough to show how grateful i am.  i wish i could do a million good deeds a day for everyone i come across.  i always feel like i need to do more, i want to do more.  i want to be able to make others feel as loved as they have made me feel.  i'm so thankful for it all.  WE ARE BLESSED!

1

aubrey gave me a book tonight that she wrote for me.  best book i've ever read........currently only available in paperback:)

Title:  I <3 U  Mom

Author: Aubrey Monet

 We love each other every day.

 You are always (i love how she spelled 'always' here:) in my heart.

 We slide on rainbows.

 We slide on slides all day.

The End. 

i love my little girl.  so much.  and i can't wait to go slide on some rainbows with her......<3

night time always seems to be so much lonelier than daytime.   maybe it's the darkness, i think darkness is much more lonely than light.   night time also brings with it lots of thinking for me..........i think i have too much time to think.   i think.....

thinking brings with it so many feelings and emotions that i wish i could just turn it off for a while.  so now i'm typing and getting some of my thoughts out, and you'll notice it won't make a lot of sense......... because it doesn't to me either!!!!!  my thoughts rarely make a whole lot of sense and sometimes the longer i think about something, the more confusing it gets.  i'm sure whoever is reading this is also now very confused themselves.  welcome to my brain!

most of the time i have too many things i need to think about that picking just one to focus on at a time is hard, so they end up getting all jumbled and meshed together, which doesn't help at all.  when i start thinking about connor and all that's going on with him, i feel so helpless and frustrated and overwhelmed that it becomes too much and too hard that i have to stop, at least for a second or two, to catch my breath.   so i switch to thinking about something else but everything i'm dealing with is equally overwhelming so i don't get much accomplished.   that's when i start thinking about penguins.  or tootsie rolls.  

which reminds me, i need to go get some tootsie rolls......

and that's my story for tonight.  a jumbled mess of thoughts.  i'll try again tomorrow...

 aubrey yelled to me the other night, "mommy, come here!  connor wants to show you something!  he has something to tell you!!"

when i came in the room connor was doing this......

I <3 U

aubrey was SO proud.....she said, "mom, i taught him something!! i really taught him something!!"  apparently she had been in there showing him how to make the I LOVE YOU sign.  she would push his fingers into the right position, and eventually he really was doing it on his own.  best present i could get, especially at that moment.  those were the exact words that i needed to hear, or see. :)

i LOVE my kids so much. 

 every little part of them.

 every ounce of their soul is embedded in mine.

i love every eyelash, every little speck or freckle on them.

i see so much beauty and light in their eyes.

i live for my kids.  i love the love that they give to me.  it helps me breathe.  

i'm SO STRESSED OUT!!!!!!!!!!!!!!!  about so many things.  i don't even think i have the mental capacity to do a whole post........so i will just finish with saying,  AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!


sigh.

today i am tired.  taking care of a sick child along with taking care of connor is just a lot.  aubrey's feeling better so i think she's going back to school tomorrow, so that's good.  i'm glad she didn't get too terribly sick, but i didn't realize just how exhausting it is when you have a sick child.  i'm so used to taking care of connor, but adding extra to that is just a lot.  but i'm so very glad connor didn't catch croup from aubrey.  that would have just a bit too much for me to handle this week.

my mind has been so preoccupied with so many things lately......i'm frustrated about things in my life, i'm worried about aubrey being sick, and i'm worried about  connor all the time... i've been thinking/worrying so much about another little girl with a very rare progressive brain disease.  i think about her and feel for her mother.  my heart just aches for them.  i get so overwhelmed by the fact that MY SON IS UNDIAGNOSED and i don't seem to be doing anything about it!  every day that passes i feel like i'm missing something i could be doing, something i should be doing.   what can i be doing????????????????!!!!!!!

my mind is tired, probably more than anything else.  the only thing that helps put some of these things to rest is the knowledge that my Father in Heaven knows exactly what is happening and what is supposed to be happening. the only thing that brings peace to my soul is that i know my Savior knows exactly how i'm feeling and has felt it all too.  i know that everything will be okay, eventually.  and i know that i am blessed to have these problems because i will be made stronger because of them, if i can just get through them.  i want to be strong enough to be able to take care of the sweet spirit that is my son.  i can feel pureness in every part of his being.....he is perfect!  he is teaching me so much, i may just be a slow learner.  i only hope that i can be everything he needs me to be.  because i want that. i want to be enough for my kids.  i love them. <3

aubrey made magic wands today for she and connor.  (she's so boooooored of being sick)  i love how she always includes connor in whatever she's doing :)

i was thinking about it, and i SO wish i had a magic wand, and that it worked......especially lately, i am frustrated with so many things going on in my personal life.....and then everything else going on on top of that......i wish i had a magical wand that would just solve some of my problems for me.   or a wand that would at least think through some of them for me.   i am so exhausted mentally and physically already that even thinking about everything is just too overwhelming most days... even thinking about thinking about them wears me out. 

so just a heads up----if anyone finds a magic wand with actual magic powers, maybe you could think about sending it my way??   thanks:)