today has been a bit of a worrisome day.   i have been worried about lots of things, lots of people, wishing i could help with things that are outside of my control..... i wish i could just fix things for people i care about, or at least help in some way.  and i've become aware of so many sweet children who are struggling in some way and it just makes my heart ache that i can't do anything personally to help them.  ahhhhh!  

it feels like i care so much and i can do so little.

and i've been worrying about my sweet boy.  his breathing is still not great and he hasn't struggled like this for each breath in a long time.  it breaks my heart to hear him and watch him fight so hard just to get air. :(  he is such a strong little boy.  i was watching him as he was trying to take a nap in his car seat while we were waiting for aubrey's school to get out, and it was so sad because he would get comfortable enough to doze off and then he would miss a breath, startle and wake up.  over and over again.  but he was trying so hard to just sleep.  

oh, how i love him. 

i think the only way for a person to stop worrying about things is to stop caring about things.  and what kind of life would you have if you never cared?  so i guess i will continue to worry because even if i can never do anything about it, i will always care.

i would be worried if i didn't.

<3

 

today i am.........lots of things, i suppose.  it's been an okay day.  connor has really been struggling lately, with his breathing and now tummy issues.  he's just super uncomfortable.  especially in the evenings/night time.  last night was rough, i feel so bad that he feels so bad:( 

it's such a difficult feeling----feeling helpless to help your own son. 

but then he also has moments where he stares me completely in my eyes... it's the most beautiful, piercing stare and i love it.  i can tell he's trying so hard to focus on me, to let me know that he hears me and that he wants me to know that he's here with me.  i feel him looking right into my soul at these moments.  i feel so completely and utterly connected to him at these brief moments where he really looks at me.  there is no separation of mommy/son at these moments, i really feel like we are one.  even more than i always do.

and that is a feeling i cannot describe-----it makes me feel so whole.  

i hope i can hang onto that feeling forever, and always remember what i feel like in those small tender moments where it's just me and my sweet boy and nothing else.  nothing else in the world seems to matter at these moments.   

i kinda love that.

<3

i got to spend most of the day in preschool again today.  connor's teacher has been sick this week and they had lots of kids in class today so i came and spent most of the day with my little school boy :)

i got to cuddle with him (and suction him) while the other kids had snack time.

we read some stories and he got lots of kisses from mommy.

oh, some possibly great news......i'm pretty sure his car seat may have been ordered today!  connor's physical therapist at school had been having a hard time corresponding with the foundation that said they would help us.  but today she said she finally heard back from them and i'm pretty sure it was ordered today.......woooohoooo!  i can't wait to give my boy a seat that fits!  i will be crossing my fingers until it arrives:)

i'm so glad i got to stay with my beautiful boy today.  i hope he wasn't too embarrassed to have mommy in his class.  i tried to be 'cool'.......sorry for all the kisses, buddy.  mommy couldn't resist.

<3

every morning when i get up i have tons of things i need to do to get connor's day started.  well first i have to get aubrey ready and fed and dressed and hair done and out the door for school.  then i start getting connor's day started...

first i have to clean out his suction machine and replace it with clean tubing and canister.  (this would probably gross a lot of people out, dumping and rinsing all his 'secretions' from the previous day.....i'm used to it)  then i get his medicine ready for the day and fill up a suppository to give to him.

when i get him out of bed he usually struggles pretty hard.  he's still got tons of gunk and junk in his chest from the night before.  so i try and get him all suctioned out, and then i give him a little 'bath', i just wipe him down from head to toe before getting him dressed.  

this is what he looked like this morning after a wipe down...

i think it's time to get his hair cut again

:)

after he's clean i give him a suppository and help him poop, give him his morning meds, get him dressed and smelling good with some lotion, suction some more, and hopefully get out the door in time to not be too incredibly late for school.

this whole process takes at least 45 minutes every morning, sometimes more depending on the amount i have to suction and length of time it takes him to finish pooping.  

those are our mornings.  

this is what he looked like for about 5 minutes this afternoon.  he took a little 'nap'.

 his naps usually last for about 5-10 minutes lately.

 he's comfortable for a few minutes and then his breathing gets in the way of sleep.

he'll be fine and then he'll miss a breath, gasp and wake himself up.

but he looks so cute and peaceful for the few moments he's asleep.

i love my little boy.

so much.

that is all.

<3

Happy Sunday:)

it's been a bit of a rainy dreary day, but i like the rain.  i love the smell of rain.  it's one of my favorite smells.  i'm not a big fan of the rain when i have to get connor in and out of the van, though.....makes it hard to protect my sweet boy from getting wet.  

we had a good day at church.  connor's still having a rough time with his breathing so he doesn't look too pleased in some of these pictures...

he's still super cute though;)

he looks so old in this picture......very handsome, i might add.

mommy loves you so much, sweet boy.

<3

a daily dose of double kisses.

my two favorite people in the whole world.

kisses for brother....

and today there was even some kisses for sissy!

 i love this little girl <3

happy sunday to you! <3

quiet saturdays

it's been a pretty quiet saturday here.  after watching cartoons and quizzing connor with flashcards, aubrey went to play at one of her friend's house, leaving connor and i to our own devices.   connor's been having a harder time breathing lately and only seems to be comfortable when i'm holding him or sitting right next to him.  if i try to walk out of the room he starts rolling and flipping over to where he can't breathe.  so i have spent most of the afternoon holding my sweet boy.....which is fine with me:)

so i went a little camera crazy again today....

i love taking close up pictures of my sweet boy's face.  

he's probably just glad it's a break from me kissing it all the time:)

i'm not exactly sure why he's had a harder time breathing.  whether it's from an increase in secretions, or because the muscles around his voicebox are getting floppy again from his decreasing muscle tone.

he had the surgery last june to trim the muscles around his vocal chords, sculpt his pallet forward and remove his tonsils and uvula (hangy ball thingy).  and it helped SO much with the quality of his breathing.

i remember right after he woke up from the anesthesia in the hospital, i was so amazed that i could hear his breath go in and out---i could actually hear the air, which was something i hadn't heard in such a long time.

but now i think it's getting worse again.  because of his continued brain atrophy he continues to lose muscle tone and function.

so whatever muscle was left around his voicebox has gotten floppy again, hindering his airway.  

it just makes it harder for air to get in and out.  i saw it for myself when they did his last scope before his surgery, every time he would breathe in or out the muscles around his voice box would just collapse into his airway because he lacks the muscle tone to use them properly.

his own throat is getting in the way of his breathing:(

i didn't think it would happen again this quickly after the surgery. 

it's just a sad reminder of how his brain is deteriorating. 

maybe they can do the surgery again to trim the muscles down and out of the way.  it is something i will be looking into.

it just makes me so frustrated for him and i want to just be able to help him breathe!  if holding him all day every day was an option i'd do it in a heartbeat.

i wouldn't mind gazing into his beautiful blue eyes every day for the rest of forever, being able to hold him close.

he might have to put up with me kissing his soft sweet cheeks every second though.

i seriously cannot get enough of his precious face.

oh, i'm so in love with this little boy.

i am grateful for quiet saturdays where i can hold him tight.

<3

i can't believe it's already march!  february flew by.  this year has flown by.  life moves so quickly and sometimes it feels like it's not moving at all.  i am constantly wishing i could just stop time and live a million years in the span of one moment with my kids.  aubrey is growing up too fast!  and every moment with connor is one i want to multiply by a thousand.   i can't believe he's already 5.  they are growing too fast for this mommy.  i love them so much.  

so the moral of the story is i need to find a way to keep my babies from growing!  but then i would miss out on all the great moments to come.  'tis a conundrum.....  

that's life, i guess.