the morning of the last day.

these next photos are from December 23---my beautiful boy's last day with me here on earth.

i took these photos with my camera.  i asked my sister to bring in her camera that morning to take some as well, but i think i'll save those for a separate post.

it's been hard for me to post these because they are the last photos i have, the last photos i can share of my sweet boy, alive.  after i post these i won't have any 'new' ones left.

that is hard.

i shared my feelings when i got home on this day, after my beautiful son had passed away.  (Behind Blue Eyes....: it's ok, momma's got you.... ) my feelings were raw and real and true and oh so painful. 

 i can't even remember writing it, or know how i was able to.  but i'm glad i did.  as painful as it is to document my sorrow, i'm glad i'm doing it.  i feel like it's a necessary outlet for me, and i'm grateful for it.

this morning was hard.

it was heavy.  i could feel the weight of it, the realness of it all.

it was my sweet baby boy's last day.  it was here and everything leading up to this day felt like it was swallowing me whole.

i had spent the entire night in my sweet boy's bed, holding him tight.  we had some tender moments, long talks, hard cries and more kisses than i can count.  it was the hardest and best night of my life.

 but morning came too soon...

i had desperately been trying to get someone to come in for the past few days to take plaster molds of my beautiful boy's hands and feet.  no one had come yet and i was getting so worried it wouldn't happen.  but someone finally came in early this morning and did them.  they turned out to be the most precious, perfect keepsake.  they turned out beautiful.  i'm so glad i have them to keep forever---my beautiful boy's perfect little hand with his perfect little fingers and his perfect tiny little baby foot.

after he had the molds done, his nurse and i gave him a bath.  we washed his perfect little body, one last time.

i was very aware that everything i was doing, i would be doing one last time.

i cannot describe to you the weight of that feeling.  the utter helplessness of that feeling.  there are no words.

here are my beautiful boy's perfect little fingers, his sweet little hand in mine with my HOPE necklace.  this is the necklace i wore every time we went to the hospital.  i never went without it and never took it off while we were there.

 

 

 i haven't taken it off since that day.  i still have it on and will wear it the rest of my life, to remember my sweet boy and to give me that hope i so desperately need to get through each day.

 after my sweet baby's bath, i was finally able to hold him.  we disconnected all his excess tubes that he wouldn't need.  we stopped his feeds, took off all his monitors and leads.  the only thing still hooked up to him were his I.V.s and his ventilator.  

it felt SO good to just hold him!

 

it was the best i had felt since we'd been admitted to the hospital.

everything just felt so right when he was in my arms.

it's like i could finally breathe.

 oh, my sweet boy!

 mommy misses you so much.  i miss holding you, and kissing your sweet face.  i miss your sweet smell, your little nose.  the way you'd move your little eyebrows and your sweet little noises.  i miss every single thing about you.  mommy loves you so much.

i had some good time alone with him, just me and my beautiful boy, before my dad came with aubrey and before everyone else got there.

those were the sweetest moments that i will cherish forever, finally being able to hold my sweet baby boy.  being able to sit and actually hold him without a million tubes getting in the way.  i had been longing for this moment for so long.

it felt so good.

 

 he was so perfect.

my dad brought aubrey that morning.  she was eager to spend time with her brother.  she brought a book for me to read to them, as promised.  she was being so brave, such a good big sister.  the perfect sister to her perfect little Connie.

she wanted to do 'fancy-pants picture time' (without the fancy, or the pants, in connor's case) one last time....

of course, there had to be silly...

and then we let connor choose...

i cannot tell you how much i miss taking pictures with both my beautiful babies.  our little family of three.  i'm glad aubrey had the idea to do it one last time.

 

 Papa and his Superboy.

the love and comfort that my dad provided for me, especially at this time, is indescribable.  he was my rock.  without him i would have crumbled.  i watched him during this whole week.  i saw him, being there for me, and mainly for aubrey.  he was a constant, a comforting shoulder to cry on and a safe place for my sweet girl to go to.  he was comfort to me.  but he was also suffering.  i also saw the pain in his eyes, the heartbreak in his tears.  my heart ached for his.  but his strength literally saved me.  i don't think he realizes the impact he has had, and continues to have on me.

he's my person.

i'm so thankful for him.

 these last hours with my sweet boy----they are hours i will never forget.  

i just wanted them to last forever.  i wish they could have lasted forever.

somehow everything just seemed ok when he was in my arms.  when i was holding my beautiful boy, everything was fine. 

"it's ok, momma's got you" 

 --these were the words i just kept repeating, over and over to my sweet son.

 but really, it was he who had me. 

i've never felt so safe as i did when he was with me. 

 i was whole when i was with him, when he was with me.

i miss him so much.

 i think i'll share more when i post my sister's pictures.

i feel like i've done all i can do today.

it's all just hard.

<3

what gets me through

it's Sunday.

  i'm trying.  it's been hard, so hard without my beautiful boy.  i'm doing the best i can, somehow days keep passing and i keep moving with each one that passes.

somehow.

mostly because of this sweet girl.

she keeps me going, gives me purpose.  she helps me more than she knows, just by being mine.

i've been designing my sweet boy's headstone and that has been nice, doing something for my beautiful boy.  but it's also hard now that i'm done with my part because it seems so final, now that that's done.....now what?

i know i have other things that will fill my time---i'm planning to go back to school, and i've been helping in aubrey's classroom----but it's such a sad feeling to think that these future plans don't include my sweet boy.  i know i must keep moving along with life, but it doesn't stop me from feeling like some days i just don't want to!  because moving along means doing it without him, without my son.

but then, i know that he is never not with me.  i am never not with him.  he is always with me, and i do feel him.  i really do.  and i also know that with every day of life that i live, i am that much closer to really being with him again.

and then we have forever.

together.

and that gets me through.  it gets me through those moments when i feel like i can't breathe.  those moments where i miss him so much i can feel the hurt in every ounce of my being.  those moments where i just don't know how i'll survive to the next.

my faith and my knowledge of Heavenly Father's great plan for us gets me through those moments.

and hugs from this girl.

she makes my heart feel happy.

happy Sunday from us.

<3

the night before.

i'm continuing on with pictures from December 22nd.  these are from that night.

the night before.

the night before my sweet baby, my beautiful boy died.

the last night we ever spent with my sweet boy.

a night i will never forget, will always treasure, and will forever haunt me.

but also a sweet, tender night that belonged to his sister.

i remember this night being a turning point for aubrey.  i remember seeing her, watching and observing, and i witnessed the moment when it all sunk in for her.....she finally got it.  she understood what was happening to her baby brother.  her special little brother, her best friend.  i saw her come to terms with the fact that he was dying, that this would be the last night she ever spent with him.  i saw her realize all this. i had talked to her about it time and time again before this night, but it was on this night---the eve of her brother's death----that she finally understood.  it was heart-breaking and painful, and also such a sad relief.

i was beginning to worry that she wouldn't get it, that she wouldn't (or couldn't) understand such an awful grown up thing.  how could an innocent little 7 year old's mind grasp such a harsh, earth shattering reality?

how could mine?

i was getting worried that i would have to keep explaining this awful truth to her, over and over, and she still wouldn't understand.  i had been doing just that all week.  it was a new heart break every time i tried to explain.  so it was a bitter relief when i saw her finally start to understand.

and then something so tender and beautiful happened...

aubrey started caring for her brother in a way i will forever treasure in my heart and in my soul.

she climbed right up on his bed and starting taking care of him, loving him, serving him.

she asked for the stethoscope so she could listen to her brother's heart and lungs. 

 she wanted the chapstick so she could put it on his sweet little lips.

she washed his feet, his hands, his body with wet wipes.   she checked his diaper to make sure it was dry.  she felt his pulse (or tried to, she had trouble feeling it).  she combed through his hair.  she checked his I.V.s to make sure they were still in.  our sweet angel of a nurse let her give connor his meds.  i cannot tell you how much i appreciate that.  i will never forget how wonderful our nurse was, letting aubrey tend to her brother in those last moments, something both aubrey and i will treasure forever.

aubrey accidentally squirted some of connor's meds on her while she was pushing them through his tube and she needed to change but didn't have any clothes, so she changed into connor's pants:)  the ones he wore into the hospital.  they were a perfect fit.  i don't know why, but this made me happy.

 she took care of her baby brother so tenderly, so perfectly.

and then she just laid there.  she laid on connor's bed with him, next to him for so long.

she touched his feet and his little legs.  by this time his legs---his whole body, was so cold because of the cold blanket he was on to get his fevers controlled.  he was literally laying on a sheet of ice and his skin was so cold.

at one point aubrey placed this pillow under his hand because his leg was so cold and she was worried his fingers would get too cold too.

i'm so grateful my dad was there.  he is such a comfort to me and to my sweet girl.

it was getting late, almost midnight and my little girl didn't want to leave her brother.

i could see the pain and anguish in her eyes.  i knew she knew.  i knew she understood that tonight would be the last night with her special brother, with her best friend in the whole world.

 she didn't want to leave.

every time i'd mention it was getting late and she needed to get to bed so she could come back in the morning, i'd see the panic in her eyes.

she didn't want to leave her brother.

i know she was feeling all the same things i was....how could she stop this from happening??  how could she turn back time??   she just wanted to make it all stop, for it to all go away.  she just wanted more time with her brother.  this couldn't be happening, it just couldn't.

but it was.  and she knew it.  and she was devastated.  i finally had to make her leave, i had to physically remove her from the bed and hand her to my dad.  that was devastating for me.  i watched her cry---gut wrenching sobs---as my dad carried her down the hall, off the elevators.  i was broken.  my heart was broken for her.  she was carrying so much, too much for a little girl her age.  i wanted to protect her from it all, but i couldn't.  such a helpless feeling as a mother----watching one child die and another lose their best friend.  it was all so hard.  aubrey asked me before she left, "is Connie going to die tomorrow?"  and then she was worried that he wouldn't be there when she came back in the morning, she was worried he wouldn't make it through the night.  i promised her he would, that he would be there when she got back and that she could help me take care of him one last time tomorrow.  i told her to pick out a special book we could read to him.  i told her that was her job. 

after everyone left i fell apart.

it hit me so hard that this was the last night i would ever spend with my sweet baby.  it was the last night i could kiss his face and hold his little hand.

it was the hardest night of my entire life.

 and also the best.  because i climbed up into his hospital bed and stayed there until morning.  i spent the last night of my beautiful boy's life right by his side, in his bed, holding his perfect little body next to mine.  i talked to him and cried to him all night long.  it was hard, but so beautifully perfect.  i have never felt more love in my life than i did that night, and that next morning during the last moments of his life.  i felt so much love.  i felt it all around me.  i felt my sweet boy's love, which is the pure love of Christ.  i have never been so happy and utterly heart-broken at the same time.  

i love him so much.

i miss my sweet boy.

today it's been one month.

one month since i've held my precious boy.

it feels like a million lifetimes.

i am thankful for my memories and for the love i still feel from my beautiful boy.

mommy misses you, sweet angel.

<3

the day before.

 these photos are from December 22, the day before.

the day before my beautiful boy left this world.  the day before my sweet boy took his last breath, in my arms.

i am splitting up this day's pictures into 'the day before' and 'the night before' because to me they felt like 2 separate periods of time.  they felt like days apart, even.  i can remember everything in 'time periods'.  the days and nights run together, but i remember instances, happenings...feelings.

this day was painfully hard.

somewhere in the late night/early morning of this day my sweet boy developed a raging fever that would not go away or respond to any sort of medicine. it was 104-105.  he was heavily sedated, with 4 different I.V. drips of sedatives and pain killers, but was so uncomfortable because of the fever that he was awake and agitated.  they finally brought in a "cold blanket" which was a temperature-regulated pad that they placed underneath him.  it basically just turned into a sheet of ice that he laid on.  it eventually would bring his fever down, but only by a few degrees.

 after numerous doses of tylenol and ibuprofen, and none of them doing anything to touch the fever, his nurse gently explained to me that it's the brain that regulates body temperature and she felt that was the reason his fever wasn't able to be controlled.

that was the moment that everything became to painfully clear to me.  it became so painfully evident that my perfect, beautiful little boy, my sweet baby, was dying.

 his body was actually shutting down.  his brain was deteriorating.  so quickly. his bladder stopped working.  the brain also regulates the bladder and he was not able to do that anymore either.  we had to use a catheter, he was holding almost half a liter in his bladder because his brain couldn't tell him to empty it anymore.  it was such a harsh reality to realize that even if i wanted to take him home, to keep him sedated and on a ventilator, i couldn't.  i couldn't stop this from happening.  his body was shutting down.  i didn't even have any options anymore.

that was hard.

i felt like it happened so quickly.

looking back now, i think that my brave little boy, my valiant little soldier, felt that he had been given permission to let go.  i had been praying so hard for him to make it to the hospital, to make it until we tried everything......and that night before, i had talked with him and prayed with him and saw his suffering.  i told him it was okay to let go if that's what Heavenly Father had planned for him.  i told him he didn't have to stay and suffer anymore, for me.  i told him how proud i was of him, how terribly much i would miss him, but that it was ok.  everything was ok.  mommy's got you, whatever happens, it'll be ok...

i think he finally felt like it was ok to let go, to stop fighting his brave and valiant fight.
i think he felt safe enough to let go.

aubrey made him this rainbow bracelet.  she brought it the day before and put it on her brother.  i promised her it would never be taken off.

and it wasn't.  he's still wearing it, a sweet present from his Sissy.

they moved us to a different room this day.  even that was hard, because i knew why they were moving us.  we were moved to a more remote, quiet, less busy part of the PICU floor.

we were moved to a double room so we would have more space for visitors, for those final goodbyes..  we were moved to the less busy section so we would have more privacy the next day, the day my sweet boy would become my angel.

 this was such a hard day.

so many hard, real things happening so fast.  so much chaos and other unnecessary issues outside of my beautiful boy were happening as well.  it was all just so much.  so heart-breaking.

so real.

i miss him so much.  this has been a hard post to write, because remembering all the feelings and emotions from this day brought me right back.  right back to the day my heart actually broke. and it wasn't done yet. 

i love him so much.

i know he fought as hard as he could for me, and that his perfect little body did as best it could.

he did everything perfectly.

<3