after the busyness is over......

it's been a while since i've written.

i feel like i need to write.

.............

i'll start with yesterday.

yesterday was one of the absolute hardest days of my life, i buried my sweet baby boy.

it's been such a whirlwind of busy since my sweet boy passed.  i've been busy with a purpose....planning his funeral.  i've been busy choosing photos, writing the obituary, writing the eulogy, planning the program, and going over all the choices and options and decisions at the mortuary.

all the busyness has kept my mind occupied, has helped me not focus on the fact that my arms are so empty, has helped me ignore the ache that is permanently radiating throughout my body, the ache to hold my sweet baby again.

all that busyness led up to yesterday, the funeral of my beautiful boy.

i woke up yesterday morning with a nervous, anxious feeling.  i knew it was going to be a hard day.

it was.

i got to the church extra early.  me, my sweet aubrey girl, my dad and teresa arrived at the church at the exact time they were bringing my sweet boy in.

i set up all the photos and books and mementos from the night before at the viewing.

i tried to make everything perfect for my beautiful boy.

my friend made a photo slide show that was absolutely perfect.  she used a Superman song, "I am a Child of God", the Tarzan song, and "Sirens".  it was all so perfect.

there was a short viewing before the funeral service, and then about a half an hour before the funeral were some of the hardest moments of my life......saying goodbye to my sweet baby boy before they closed the casket was gut wrenching, so incredibly hard.

i left some special things with him, i'll share those at a later date.

my sweet boy looked so handsome. (although aubrey said he was "a little too tan" :)

i picked out a black suit with black pinstripes and a perfectly blue tie.  he looked pretty sharp.  oh, and he had on his first pair of big boy undies.....Superman, of course.

the funeral service was beautiful.

such a perfect tribute to my sweet beautiful boy.

i had 2 beautiful musical numbers by friends that just made my heart weep with joy.  the first was a rendition of I Know that my Redeemer Lives, and the second was A Child's Prayer.  so beautiful.

i went up and spoke a few brief words, just introducing "Connor's Song", the Tarzan song.

i wanted to say so many more things about my sweet boy, but knew i couldn't have physically gotten through it.  luckily the song was able to say at least some of it...

i chose my dad to be the main speaker.  he did such a wonderful, perfect job.  i love my dad so much and he said everything just the way i would have said it.  i can never thank him enough for being brave and strong enough to be able to speak on behalf of my beautiful boy.

it was so perfect.

the service went just as i imagine it would.  it just all seemed so final, so real.  so hard. 

toward the end i found myself wanting to just hit rewind, so i could have more time, i wanted more time with my sweet boy.  it was all happening too fast.  too real.  too much...

 

the burial at the cemetery was beautiful as well.

my friends organized and brought balloons for a balloon release.  we released beautiful blue balloons along with some Superman ones mixed in.  watching them float up to heaven was a sweet feeling.  we laid single white carnations dipped in blue on top of my beautiful boy's casket.  my brother dedicated the grave.  it was all sweet and beautiful.  and real.

it all became so real yesterday.

we went back to the church for a luncheon put on by the sweet sisters from my ward.  they all did such an awesome job of taking care of so many details.  i have been helped so much by so many people, near and far.

i truly am so blessed to have so many good people in my life.  there is so much good in this world, and i am surrounded by so much of it.

my beautiful boy was epitome of everything that is good  about this world.

he was such a blessing to me, and everyone who had the good fortune of meeting him.

he was my saving grace.

he saved me.

in every way that counts, he saved me.

it was, and has always been my privilege to take care of him.

every day.

every single day, good and bad, it was my sweet privilege to take care of my sweet, beautiful, blue-eyed boy.

he was my whole life, my whole days and nights, my whole everything, along with his sister.

my whole world has been changed in a matter of weeks.

everything is different for me, Connor consumed every waking (and non-waking) moment of my life.  and i loved every second of it.

i miss my sweet boy. so much.

i'd give anything to be able to hold him again, to suction him again, to do all the monotonous tasks i am so used to doing, day in and day out.

i feel so out of sorts.

so lost.

i just long for my sweet boy.

 

i know the hard part starts now.

the hard part starts after the funeral, after all the busyness comes to an end.

especially after my dad leaves, on friday.

the hard part is now, and in the coming days, weeks, months.  years.

i just miss him.

i just miss my sweet beautiful baby boy.

i just love him.

i just do.

<3

it's ok, momma's got you....

today has been the hardest, most gut wrenching day of my life.  there are no words to describe what i'm feeling, but i feel like i need to get words out so i'm just going to write...

today i lost my son.

i lost the best part of me.

today my son left me, left this world to go to a better one and live with his Father in Heaven.

he's gone.

he's no longer with me and i miss him so much.

my beautiful boy and i were connected, we were one.

i have not spent more than a few hours in a row away from my son for the whole 6 years he was on this earth.

i have never been apart from him as long as i have been today.

i feel lost, and broken and empty and i don't think it's truly sunken in yet.

i feel like i'm missing something.

i am.

with all that said though, i also feel an undeniable peace that's so strong i can't deny it.

my beautiful boy was ready to go.

it was his time.

it was a beautiful release for him.

for the past 3 months he has been suffering every waking moment, with only brief respites of calmness when he wore himself out enough to sleep. and that would only last for short periods of time.

he has been struggling so hard, fighting so hard to just be.

he is the strongest little boy i will ever know.

his perfect little body has been failing him slowly for a long time, but over the last few months has just rapidly been declining at a rate that could not be helped.

by the time we reached the hospital, i knew it was his time.

for his whole life i have always known i would be able to know when that time would come.  i trusted that the Lord would guide me and whisper to me exactly what he needed and when his time with me was up, when his mission here was done.

i have felt that soft whisper for the past few months, but have tried my very hardest to not hear it, that if i could ignore it it would not be true, it would not be real.

i was not ready.  i could never be ready.  i didn't want to ever be ready.

i'm still not ready and it already happened.

when i walked my sweet beautiful boy into the hospital this last time to get his trach, i had an undeniable feeling that i would not be leaving with him.

after his trach was placed and his breathing didn't improve, after being ventilated and able to breathe and realizing that breathing didn't bring him any relief, that breathing didn't stop the suffering while he was awake, it dawned on me that his breathing hasn't been the main issue.  his breathing problems i realize now were more of a symptom of what was really going on, his deteriorating brain disease (whatever that may be) is the cause of his discomfort, the cause of his problems breathing.

i just love him so much and miss him more than i can even try to describe.

this morning i held my sweet boy in my arms as he slowly, peacefully faded away, making a beautiful transition into a celestial world full of peace and light free of all pain and suffering.

i held my beautiful son in my safe arms and reassured him over and over that it was ok, "momma's got you".  i told him it was ok to go and that i would miss him with my whole entire being and made him promise to visit me from time to time.

i slept in his hospital bed last night and had long long talks and long hard cries with him.  he promised me he'd watch over his sister, it was his turn to take care of her like she's taken care of him.

i had the most personal, tender, spiritual experience as my sweet boy slipped away from this world and entered into Heaven.

it's very personal and tender and dear to me, maybe to much to share on here, but i can say that i know for 100% certainty that my beautiful boy is safe and at peace and that i will see him again.  i know that he is with family members that have passed on before, i know he is with my Aunt Kitty who i have never had the privilege of meeting.  i know that he is free of pain and suffering and that his body is perfect and he can walk and talk and breathe.

i know this.

holding my son as he passed from this life to the next was a beautifully peaceful experience, it's the here and now that becomes hard.

my sweet girl is grieving deeply for the loss of her best friend, her little brother, her "Connie".  she is the sweetest, most tender-hearted little girl i know.  she spent last night in Connor's hospital bed with him, taking care of him, washing his hands and feet, listening to his heartbeat, kissing his forehead.  our incredible nurse let her give him his meds.

we had the privilege of having the same nurse the last 3 nights in a row, and she and i had an instant bond, she said she felt on the very first night that Connor had grabbed ahold of her heart.  she was with us last night and stayed on into the morning/day shift just so she could assist with the passing of my sweet boy.

she is my angel.

my dad has been here for me the whole entire time, and i would not have been able to survive without him.

i have relied and been lifted up by the love and support of so many people from all across the country.

i am so blessed to have so much love surround me.

i can feel it all.

i am at a loss for how to go on, but then i look at Aubrey and i know i can and i will.  i know we will do it together, she and i.

she is my everything and i love her so much.

i miss my beautiful boy with every ounce of my whole entire being.

Aubrey told me he's with me, i just have to look up.

i know he is.

i just wish i could hold him.

i just long to hold my sweet boy.

my arms feel so empty without him.

i know life goes on, life moves forward, i'm just not sure how yet.

but i will figure it all out, in time.

i love my sweet boy, i miss him dearly.

i hope he knows how much mommy loves him.

i hope he knew how hard i tried.

i hope he is looking down and smiling, his first 'real smile'.

i believe he is.

<3

update.

i don't even know where to begin..

it's been such a rough week.

again.

my beautiful boy started having trouble breathing again on Monday of this week.  the "blue episodes" started up again.

i took him in to his doctor on Thursday and discussed our options.

basically, the only options we have are to do nothing, or do a tracheotomy.

i know if i did nothing and just let things happen naturally, my sweet, beautiful boy would probably not live another week.

so we're going to do the tracheotomy.

it's scheduled for Tuesday, but i may have to take him in to the ER before then if his breathing gets worse.  it's really a moment to moment kind of decision.

this has been just awful, watching my sweet little boy suffer so much.  struggle so much.  just to breathe.  just to be.

i love him so incredibly much and this has been so terrifying, as a mother, watching my son inch closer to death each day.

i can count more than a handful of times where i thought this could be his last breath.

it is the absolute worse feeling i have ever felt.

so far.

i know a trach is something i never wanted for him, i know i didn't want it to get to this point, but it has.

and i know it's our only option, and that it will hopefully be a good thing for him.

i hope it will bring him relief and help him to be more comfortable. 

the doctors don't know how he'll respond since they don't know how his underlying brain issues will affect his lungs once the trach is in, but they do predict he'll have to be on a ventilator as well.  right away.  but maybe not.  and maybe only at night.  i just don't know.  they don't know.

they only thing i know is that i love my son.

and i am doing everything i can to try and help him.

i just wish i knew what the right decisions were.

i'm doing the best i can, yet it never feels like enough.

i love him so much.

so, so much.

he is so perfect.

please keep him in your prayers if you can.

<3

faith.

sigh.

these last few weeks since Connor's surgery have been the worst days of my life.

hands down.

but first, let me start off by saying that last night was one of the best nights my sweet boy has had since his surgery.  he still struggled, but slept much better and more peacefully than he has in weeks.

i am so grateful for that!!

during these weeks of watching my beautiful little boy struggle, watching him suffer so immensely ALL DAY LONG, has been absolute torture for me.

i have spent most of this time on my knees----begging, pleading, crying, screaming, questioning, weeping, wailing, and just plain aching for my son.  i have never seen someone so little, so perfectly beautiful, suffer so much.  it has been heart-breaking, and painful.

i have spent many long, sleepless nights questioning why????

why him??

why not me instead??

why does my beautiful little boy have to go through this??

and why is there no relief??????

i just wanted it to stop!  i wanted to take it all from him!  i just wanted some relief for my sweet boy!

i honestly have never seen someone suffer so much, for so long.

it was literally breaking my heart a million times a day.

although i questioned Heavenly Father, and at times was so angry with him for not taking this away from my son, i always had faith.  i always trusted that He knew what was going on and He was in control and that everything would turn out the way He intended, even if i didn't understand or thought it wasn't fair.

i never once felt abandoned or alone, and i know that was His grace, His strength that was even getting me through.  that, and my dad.

there is no other way i could have gotten through these weeks, these nights, these days.

i know there is a purpose to all of this, even if i have no idea what it is right now.

last night, as i was holding my beautiful son, and he was struggling, grinding his little teeth so hard, i started singing to him (and i do not sing).  i started singing little nonsense songs, and "his song" (the tarzan song), and he looked at me for the first time in weeks, really looked at me.  and all of a sudden it seemed like he was back.  he looked more like himself than he had in weeks.

i think, and this is just my theory, that he really wasn't here, not fully throughout all of this.  i think his perfect little soul couldn't fully be there to handle all of this suffering.  i think he had to not fully be present in order to endure all of the pain.  he seems like a different person now.  like himself.  like my beautiful, beautiful boy.

now, that doesn't mean he isn't still struggling.  he's still in pain, still grinding his teeth, still flailing and jerking, but he just feels more like my sweet boy.  there is a peace now that wasn't there before.

i am so incredibly grateful for this. 

for the first time in weeks i don't feel helpless.

i hope by writing all this it doesn't jinx it..........

i am still hoping and praying for improvement everyday.  there is a long way to go, with no real 'end' in sight, because we still have no answers or no real way of knowing what is to come.

i just have to have faith.

and i do.

<3

long week.

it's Sunday.

no fancy pants for us today.

it's been such a hard week.  last Sunday was the worst day of my life, so far.  and every day after has been a struggle.  my beautiful boy is doing better in some respects, but still really just struggling.

the only plus side to all of this was that my dad was here.

he extended his plane ticket twice to stay and help me.

i got to spend Thanksgiving with him, and i am so glad i did.  usually it's just me and Connor by ourselves, so it was nice to have my dad here to keep us company.

my dad is amazing.

i've said it many times before and i'll say it again....he's the best man i know.

he left yesterday and i miss him so much.

we all do.

he was such a big help while he was here, and the greatest support to me always.

but it also broke my heart to see how heart broken he was to see Connor struggling.

i think it really was breaking his heart.

i don't think he realized how hard my sweet boy struggles, and these past two weeks have been the worst two of his life, i'm sure of it.

it's so gut-wrenching to watch this perfect little boy, this beautiful little being, suffer so immensely.

i just don't understand why sometimes.

why????

why does he have to suffer so much, and why can't i help him???

it's been torture, the not being able to help him.  these past few days he's been suffering all day long.

all day long.

it doesn't stop, and nothing seems to help.

i just love him so much.

i continue to hope and pray that things will start to improve.

something's got to give soon.

he's such a strong little boy.

i just want some peace for him.

<3

worst 10 seconds of my life.

so this has been probably one of the worst weeks of my life.

everything's been such a whirlwind, i don't even know where to begin really...

when we brought connor home from the hospital after his surgery, he wasn't doing that great to begin with.  he was still in a lot of pain, and not breathing well, and not breathing at all without the nasal trumpet in.

and then it all started to go downhill from there.

for starters, he was having the worst stomach cramping/diarrhea i've ever seen in my life from the antibiotic he was on (i took him off) and also i think because they had been giving him the wrong formula the last day he was in the hospital.

so there was that.

and then there was the swelling of his tongue and the extreme pain.

and the agitation.

i have never seen him so agitated in my life, and he's been all kinds of agitated before.

he literally fought and flailed and grinded his teeth for 20 hours straight on Saturday.  even my dad had a hard time physically holding him because of how hard he was fighting and jerking.

then on Sunday he seemed to be slightly calmer that morning so my dad left and took aubrey to my sister's to go to church.

then the worst moments of my life happened.

it's really hard to even type, hard to put into words or share, but i need to because it happened.  and i can't pretend it didn't, or sugar coat it to make it better or less scary or real.  it happened and it was real.  and it was the absolute worst few moments of my entire life.

it might be hard to read, so i'm just warning you now.

while my dad was gone with aubrey, connor started to become extremely agitated again, even more so than before.

i was changing his nasal trumpet to the other nostril (as i had done many times before), but when i put it in the other side something must have been clogged and blocking the air from going in because he started to turn blue really fast.  he wasn't getting any air in at all.  i quickly switched it back to the nostril it had been in before, but he was already so agitated and frantic (and terrified looking) that he wasn't able to get a breath.  at all. he was turning so blue, so fast.

i was trying everything i could, but nothing was working.

i was terrified.

and i don't get terrified all that often with him.  some things start to worry me at certain points, but never have i felt actual heart stopping fear like i did on that day.

my beautiful boy was dying.

i was holding him and he was so terribly blue and getting no air in at all.

he started convulsing, his body was convulsing and starting to shut down, i could feel it.

he started to go limp and then his eyes started to roll back into his head.  

i felt him leaving me, i truly felt him leaving me for a few moments, the worst moments of my life.

i started breathing into his mouth, giving him rescue breaths.  and then i started screaming at him.  i was yelling at him to stop, to come back. after what seemed like an eternity (i'm sure it was only about 10 seconds or so) he started to get little gasps of air in and his color slowly started to return.

he was back, and i was shaking.

i have never been so frightened in my life.

so many things were running through my mind as this was happening.  i kept thinking about aubrey and how she left and he was alive and she couldn't come back to him gone.  and how he couldn't leave me, not now, not like this.  i wasn't ready, i wasn't prepared.

how will i ever be prepared???

after all this, i called my dad and told him what happened and that we needed to take him to the emergency room.

so we did.

we went back to the hospital.

we got to the ER and they immediately put him on oxygen.

oh, and when we got there, i took off his jacket and discovered this on his arm:

 this was on his arm and no one could tell me what it was exactly.  they still can't.  some were saying it looked like he pinched it (really??), some said it looked like he scraped it (but there was no surface blood, just these slightly raised red bumps), and others said it looked like burst blood vessels.

i think he was probably straining so hard and so agitated that he burst his blood vessels.  but i'm not sure because it was only on the one arm and no where else.

 very strange.

anyway, we waited in the ER for a while while the ran some tests and blood work and did chest x-rays.

 everything came back normal, of course.  except that his swab test tested positive for a cold virus.

so i'm sure that was causing his breathing to be even worse.

i felt so bad for my sweet boy.

i love him so much.

we were admitted to a room upstairs pretty quickly and he was still so agitated.

he was finally given ativan and was able to calm down enough to fall asleep for a little bit.

 we spent the next day trying to keep him comfortable and breathing well and control his agitation.

they upped his pain med dose and kept the ativan coming, more than they would probably normally do.

he was only comfortable when he was sedated.

they kept us another night, they really didn't know what to do for him or why he was so agitated.

 it was a long couple days.

not much sleep at night, and lots of waiting during the day.

 i just love him so much.

luckily, my dad was here and able to extend his plane ticket (twice).

i felt so much relief knowing that he was taking care of my sweet girl.

 or maybe she was taking care of him....

i love these two so much.  i felt so bad when they would leave because aubrey would beg me to stay or to come home with her.  it would break my heart.  i wish i never had to be away from her, and i hope she knows how much i love her.

she's the best big sister ever.

finally we were set up with a game plan, and able to come home.

apparently, we were supposed to have gone home with oxygen the first time we left the hospital, but somewhere that "got lost in translation".......(so frustrating)

also, he was supposed to be on his steroid still, (to help with the swelling) but somehow that got lost in the mix too.....(even more frustrating)

so this time i made sure we had everything, along with some ativan to be given as needed if his agitation continues.

we're home now.

he seems to be doing well so far, i'm trying to keep him as comfortable as possible.

the oxygen seems to really help.

he is so beautiful.

he is so perfect.

i am so lucky to have him here with me still.

 i have so much to be thankful for this Thanksgiving.

i could go on and on counting my endless blessings.

the greatest blessing, by far, is being a mother.

i am so lucky.

<3

tongue reduction surgery.

we're home from our very long stay at the hospital.

well, at least it seemed like a very long stay.

it was hard.

my beautiful boy is the absolute strongest person i know.

i love him.

here is our journey this hospital stay, mainly through pictures because i've already been updating through my facebook page.

and also, i'm just tired.

getting ready to leave for his tongue reduction surgery.

once the yellow socks go on, there's no turning back.

lots of hugs from mommy, more for mommy's sake than anything else.

handing him over to the anesthesiologist is always the hardest part.

the surgery only lasted about an hour and a half.  it went ok, but the recovery was going to be the hardest part...

 my poor sweet boy.

i cannot tell how heartbreaking it is to see my beautiful boy in so much pain.

he is so incredibly strong.

the hardest part for me is knowing if i made the right decision by doing this surgery.

he was in so much pain and had such a hard time after they extubated him (took this tube out).

and i don't even know if this will really help his breathing in the end.

 i really question myself as a mother when i see him like this.

am i making the right decisions??

am i doing what's best for my son??

he is so strong.

visits from Sissy definitely help.

 see how he fits incredibly well in his bed?  that's because i had my dad bring his 'bed' from home.

the foam bed my dad and i built for him that sits in his bed at home.

works great in hospital beds too:)

when he got the tube out he struggled.

scary 5 minutes or so.

and he was still in so much pain.

but he was able to sleep a lot, and i am eternally grateful for that.  it's so much easier for him to sleep than to be awake and struggle.

more visits from Sissy and Papa help even more.

so glad my dad was here to help.

this is the 'trumpet' tube in his nose that goes to the back of his throat that he came home with and has in now.  it is helping him to breathe.  when we took it out he couldn't keep his oxygen saturation up.

 he's so beautiful.

 finally headed home.

my two babies, a nasal trumpet, and a foam bed.

it was a long, hard hospital stay.

glad to be home.

glad to be in Papa's safe arms.

i love my beautiful boy.

strongest person i know.

he's in a lot of pain right now, it will be a long week ahead of healing.

i'm hoping this will help him breathe better.

i'm hoping it makes him more comfortable.

i'm hoping it was worth it.

i'm hoping he knows how much i love him.

i'm always hoping.

<3

Papa makes everything better.

Happy Sunday!!

a very happy Sunday because Papa's heeeeeeeeeeere!!!

in his fanciest of pants, of course.

we're so happy Papa is here!

Connor is the most excited, can't you tell??

we decided to do 'connor mode' for our next pictures.....

and 'silly mode' for our next ones.......

Papa was getting the hang of it.

it was great having my dad at church with me, especially since it was my week to teach in Young Women's and he came in to help:)

he took care of my beautiful boy while i taught, and i made him help me by telling stories and giving some of his great advice.

i love my dad!

i just wish he was here for a different occasion....

i'm getting nervous about my sweet boy's surgery on Tuesday.

i just hate that he has to go through any of this.

but luckily, he's the strongest little man i know and i know he'll face this with the same strength and bravery he always does.

he's so perfect.

aubrey's been on cloud nine having her grandparents here.

she and Papa are seriously the best of friends.

they are the silliest two people when they're together.

i love it.

happy Sunday!

<3