Sunday, November 30, 2014

when i forget how to breathe...

oh, this Sunday morning my eyes are still swollen from last night.
last night was hard.

i think i let all the emotions from Thanksgiving and missing my sweet boy and stressing out over finals coming up get to me........and last night i couldn't hold it all in anymore.
last night i wept harder than i have in a long time.
last night i forgot how to breathe again.
i can't describe the feeling that comes when i forget how to breathe......
i can't put into words how it feels to know i have to live the rest of my life without my beautiful boy.....
it's a panicked, gut-wrenching feeling and it just hit me really hard last night.
last night was hard.

when nights like this happen and i don't know if i can survive because of the pain, i am so grateful i have a lifeline that i know i can always turn to, no matter what time it is.
i called my dad.
it was nearly 3:00 in the morning his time, but i knew if i called he would answer.
he is always there.
he is my person.


i am super emotional, a bit of a mess really.
i think it's the time of year.....this time of year is beyond difficult for me.
this time last year my beautiful baby boy was actively dying and my heart is still intertwined with it all.
it really is like living it all over again.
i just miss him.
i just wish i could have protected him, saved him from it all...

tomorrow we start decorating his Superman tree at the Festival of Trees.
i am so honored and appreciative of all the love and support and donations we've received in order to make this all possible.
it's been therapeutic in a way, shopping for all this Superman stuff for my sweet Superboy.  Picking out things i know he would love if he were here...
it's hard though----decorating a tree in his memory.......i just wish he were here with me instead of in my memories.
i'm so grateful for it all though.
for the memories, for the love and support and kindness of friends and strangers who want to honor my sweet Connor.
it's all very humbling and i'm so grateful for it.
i'm grateful for everything and everyone.
i'm grateful i am here and still breathing this morning, and for a father who helped me remember how.
i am grateful for the power of prayer and for tender moments of faith and hope that shine through my darkest hours.
i am grateful for it all.
happy Sunday to you.
<3

Thursday, November 27, 2014

love is the answer.

oh, today is hard.
today is an incredibly hard day for me without my sweet boy.
Thanksgiving was our holiday.
well, we didn't really do anything to celebrate the actual holiday, but it was ours because we spent it together.
every year it would be just the two of us at home, alone together.
my sweet girl usually goes with her dad to her cousins' for Thanksgiving and Connor and i just stay home together.
I MISS HIM SO MUCH!!!

i will get to all the things i'm grateful for in a minute {i have so many things to be thankful for}, but i need to be honest and real and i can't do that without explaining how hard this is for me.....
sometimes this all just really SUCKS!!
i try so hard to be positive and brave and strong, but sometimes, especially days like today----sometimes it all just sucks.
it's all too hard, it all just hurts.
today was supposed to be like all the other Thanksgivings......me at home with my sweet boy in my arms......me joking with him and asking if he wants mommy to make some gravy to put through his tube......ME and HIM.....together, like always..
i just miss my son..
i miss him so much.

this was my blog post from one year ago today: Behind Blue Eyes....: worst 10 seconds of my life.
 i read this last night and wept.
i remember all this like it was just yesterday......but it seems like lifetimes ago.
i remember the panic i felt, the absolute heart-stopping fear i felt as my beautiful little boy was going through all this.  he was suffering more than i've ever seen anyone suffer in my entire life.
he was hurting; he was dying.
i didn't know it, but i knew it.
i feel like the day i talked about in that post----those "worst 10 seconds of my life"----i feel like my sweet boy truly left that day, and the only reason he came back was because he knew i needed him to come back.....he knew i needed to be able to try everything in my power to save him before he left.....i feel like he came back and endured more pain and suffering for me.  i feel like he did it for me because he knew me better than i'll ever know myself, and he knew i needed to try everything.
i wanted to save him.
i just wanted to save my sweet boy.
i love him so much.
 he is my hero.

  today is hard.
i can't sugarcoat it and make it be any other way than hard.
but i'm still grateful.
i'm grateful for so many things in my life and i feel blessed.
i am blessed.
daily, i am surrounded by the love of friends that i could not live without.
friendship and love got me through this year, carried me when i could not walk one more step on my own.
how do you live after losing your own child??   how is it even possible to breathe without my son??
LOVE. 
love is the answer.
love is there when nothing else seems to be.
my son is gone, but the love is still there.
my sweet baby is gone but love is always here.
my sweet girl reminds me of this every day.
i love her so much.

i am grateful.
i am grateful for love, that i'm able to still feel it and give it freely.
i love my family, my friends.
i love my children, my sweet girl and my beautiful little angel boy.
today is hard.
but i'm grateful for it.
and i'm grateful for all of you.
Happy Thanksgiving to you.
<3

Sunday, November 23, 2014

11 months

it's a hard Sunday.
11 months today.
Eleven long months, the longest i've ever known.
one month short of the year mark.....it's all just so hard.

i miss my son.
oh, how i miss my beautiful little boy!!
i once asked somebody (someone who had also lost a child), "does it ever get any easier??"
they replied, "it doesn't get easier.......it just gets longer."
i understand now.
i understand and i hate that i do.
i hate that i know how that feels, i hate that anyone else knows how this feels.
no one should know how this feels.
it's hard.
it hurts and it's hard.

i miss my son.
 i miss him so much.

these past eleven months i have felt so many things.
i've never felt more alone and sad and heartbroken in all my life, while at the same time feeling so loved and comforted and supported.
i'm feeling all these things all the time and it's a confusing realm to exist in.
i feel so terribly alone without my sweet boy, yet i still feel him near.
my heart is literally broken, but i know it's still there because i still feel so much love.
sadness and grief don't even come close to describing the pain......there are no words that will ever come close to being able to describe the void that is now in my soul......yet, there's still joy there too!  i'm still able to laugh and smile and that's a huge blessing because 11 months ago, i didn't know if that would be possible.
some days i still wonder.........but i am still here, still trying.
still breathing.

i miss my son.
i am trying so hard to live my life in a way that honors him and will make him proud.
i just worry that i will fall short, i worry that i do fall short.
i worry that the mistakes i make are letting him down, and i can't let him down!
i feel like he's counting on me to do my part, to do my best......and i just don't want to let him down.
a lot of the time i feel like i'm letting him down.
oh sweet boy, mommy's trying.
i know i can always do better, but mommy's trying.

i wish he were here with me.
i just miss him.
i find comfort in knowing that he's okay, that he's safe and okay and still perfectly beautiful.
i just miss him, that's all.



mommy loves you, buddy-boo.
so much.
Happy Sunday.
<3

Monday, November 17, 2014

back to the PICU

oh, my heart.
i need to write.

aubrey i and just got back from Primary Children's hospital, i have two different friends with their sweet boys there right now.
they were both in the PICU---that's where my sweet boy died almost a year ago.
i have been back to the hospital since my beautiful boy died, but not to the same floor, not to the same spot where he took his final breaths.
this was hard.

i'm glad i went, and i will go again whenever they need me (and even when they don't).  i am so grateful to have such wonderful friends in my life and to be able to see their sweet little boys---these boys have such strength, it's amazing.  i'm so glad i got to see them tonight.
oh, my heart though!!
i am still shaking as i'm typing this.
i expected it to be hard, walking back through the doors of that PICU, and it was.
i did ok at first, the first room i visited was in a different area than my sweet boy was in.
the little boy is beautiful and his mother is my sweet boy's angel----literally, she was the nurse who took care of my beautiful boy during the last days of his life.  i called her his angel, and she truly was.  now she's there with her son and i just wish i could do something to take it all away from them.  it was a blessing to be able to see her and hug her tonight.

i did ok.
i was doing ok, and then i went to the next room to visit my other friend....
her sweet boy's room was right next door to the room Connor died in.
ahh, i didn't know if i could do it!!
i really didn't know if i could walk down that same hall, turn that same corner and walk past my beautiful boy's room. 

i did it.
i took my sweet girl's hand and we walked there together.
we walked down that same hall, we turned that familiar corner....
and walked past his room.
i went in and saw my friend and her sweet little boy and i'm so glad i did.
i'm inspired by the strength of these women!
i'm in love with their love for their sweet boys.
i have so much love, i just want to make everything better for both of them.
i just want to fix it all for them.
i can't fix it, but i know they will be okay.
i have so much HOPE for both of them.
i'm glad i went.

but then i walked out.
i walked out of my friends room and stood in front of my sweet boy's room and i started to panic!
i wanted to run in there!!
i wanted to run in there and have him be there!!!
i had the irrational thought that he could be in there!!!
last time i was here, HE WAS IN THERE!!!
what if he was still there??
maybe he was still there!!!

i looked in and the bed was empty. 
why wasn't he there??!
WHY CAN'T HE JUST BE IN THERE AGAIN??!?!
i just wanted him to be there again.
i just want him here.

he wasn't there.
he's not here.

i walked out of the PICU and made it about 5 steps down the hall and i had to sit down.
i crouched down right there in the hallway against the wall and tried to remember how to breathe.
slowly, i reminded myself that it's okay.
he's not here, but i'm still here and it's okay.
he's not here, but my sweet girl is right here with me and it's okay.
he's not here, but my friends' little boys are and they're going to be okay.
it's going to be okay.

i kept saying 'he's not here' in my head....
and then i felt him.
he was there!
i felt my sweet boy so strong, i know he was there!
i took my sweet girl's hand and stood up and felt my beautiful little boy walking me down the hall.
i felt him helping me, i felt him so strongly and then when i reached the stairs i felt him let go.
i hesitated, but then i knew the reason.
i know my sweet boy was helping me out, and then going back to the PICU to watch over those other little boys who needed him more than me.
it's like i could hear him telling me, "you'll be okay, momma....but i've got to go back and watch over my friends.  it'll all be okay."

i'm so glad i went.
<3

Sunday, November 16, 2014

this time last year....

oh, it's Sunday.

i feel like i need to write..........
lately it's been hard.
this weekend has been harder than most, and i couldn't really put my finger on why really....
but then i sat and looked back through my blog, i started reading my posts from this time last year....and then i realized why my heart is so heavy.
it was this time last year when my beautiful boy was starting to die.
on November 19th of last year he went in for his 'tongue-reduction surgery'.
this was a last-ditch effort to try and save his breathing---this was our last option before a trach.
this was the first time in his life where i didn't feel confident or have a 'good feeling' before handing him off to the anesthesiologist. 
my mother's heart didn't feel right about this.....my mother's soul knew something much bigger was about to happen.
i just didn't know how quickly it would all go down.
i didn't know my sweet baby boy was only a month away from his death.
i didn't know.....but at the same time i knew.

i wrote about his surgery in this post: Behind Blue Eyes....: tongue reduction surgery. 

looking back, i still feel so much pain and guilt for what he had to go through.
was i doing the right thing??
did i make the right choices for my beautiful little boy??
did he know how much i loved him and that i was just trying to help him, trying to SAVE him??

it tears my heart apart knowing how much he suffered......and that i wasn't able to save him.
  i tried so hard to do what i thought was best, but i'll always wonder if what i did was the best thing for him......i just wanted him to be okay, to stop hurting.
i just wanted to save him.

i tried.
i tried so hard to save my son.
mommy tried, sweet boy.  i hope you know how hard i tried and how sorry i am you had to suffer.
ultimately, death is what ended his suffering.
i know with all of my heart and soul that he is at peace and his suffering is completely gone.
i know that this is the way it had to be.
i know that no matter how hard or what i tried, it all would have worked out the same way.
i know this.......
but it still hurts.

as his mother, i tried so hard to save him.
i tried so hard to do all the right things for my precious son.
in the end, he ended up saving me.
a million times over, he saved me throughout his life.
his life was so beautiful.
he was so perfect.
i am working my way through this heaviness, this overwhelming grief that blankets my soul.
i am feeling it all as if it were yesterday.
i will not run from it---even when all i want to do is just run away from it all!!!!----i will not run from this pain.
i can get through it because he is still saving me.
i still have him, just not in the way i want.
he's still with me, it's just different.
harder, but still there.
i feel like i'm rambling, fragmented thoughts coming out at random.
this is how my brain is working today.
it's the best i can do.
i'm grateful for an outlet for my thoughts, these feelings that i cannot keep inside.
i'm grateful for my life and for every struggle that has led me to where i am today.
i'm grateful for my sweet babies.
more than anything, i'm grateful for my sweet babies.

happy Sunday to you.
<3

Sunday, November 9, 2014

moments of clarity

it's Sunday again.
it's hard to believe it's already November.....this year has gone by so incredibly fast, yet it's also been the most painfully slow year of my life.
i can't help it that i keep thinking, "he was here with me last year"......or, "last year he was here in my arms".
soon i won't be able to say that anymore......soon a year will have gone by and that's scary for me.
i don't know why this concept of time is so hard for me.
time makes no sense to me anymore, i don't know if it ever will again.
if i think back, if i go back in time it seems like forever ago since my sweet baby boy was in my arms where he belongs.
but then some days it feels like just yesterday i was kissing his sweet cheeks, or suctioning his little nose, or rocking him safely in my lap.
looking forward is by far the hardest.
i can't do it.
i cannot look forward more than a day or two at a time because the thought of a life---the rest of my life without my beautiful boy---i just can't do it.
i panic, and i can't breathe.
it's too much.
it's all too much.

i feel the panic start to rise and my body forgets to breathe.........
and then i close my eyes and i pray.
and on a good day i feel him.
and in those moments i am reassured; i am calmed; i am comforted.
because in those moments i know that this life is but a brief moment in what will be our forever.
in those moments all the uncertainty and fear goes away and i know i'll be with my beautiful boy again, if i can just hold on and make it through the days.
these days that i forget how to breathe, these days will be nothing compared to the eternity we will have together.
i can get through these days, if i just focus on those moments of clarity.
i can get through anything because i have faith in something much bigger and greater than i can even comprehend.
these brief moments of comfort are just a glimpse into what is to come.
and these days are still beautiful.
these are the hardest days of my life, but they are still beautiful because i still feel him.
and i'm still able to hold and kiss my sweet girl, and giggle with her until we both start snorting, and then giggle some more until tears fall down our faces.
i still see so much beauty around me, in the faces of friends and sweet children and beautiful sunsets against the mountains.
some days are so painfully hard, but i still appreciate the beauty that lies within each struggle.
i miss my sweet boy.
oh, how mommy misses her sweet baby boy!
i am grateful for the moments of comfort that come when i need them most.

happy Sunday to each and every one of you.
<3

Sunday, November 2, 2014

HOPE shifted.

happy November Sunday.
ahh, my emotions have been all over the place lately.
there's something about the changing of the seasons, the weather---it's just making everything a little harder.
last year he was here.
last fall he was still here in my arms.
last Halloween he was here with me, he was Superman....he went trick-or-treating with me and Sissy and the neighbor kids.
last November he was here, he was struggling but he was here.

he was here LAST year!!!!
this is the last time i will be able to say that.
it's scaring me as the 'one year mark' is growing closer....
it all seems so big, so hard.
it is.
it's all so hard.

last year i still had HOPE.
 i still had a hope for things to get better for my son.
i understood and felt that it might not, but i still had that hope because i didn't have anything else to cling to.
i held on to hope because i needed to.
i needed it, and i clung to it for dear life.
things didn't work out the way i wanted them to...
i didn't get that big miracle for my son.
he's not here with me and that's never the way i wanted it to be. 
he's not here and oh, how i wish he was!!!
i may not have gotten what i was so desperately hoping for, i don't have my son in my arms like i should.
but i still have HOPE.
my hope has shifted, it's evolved.
but it's still there.
it never left me, and now it helps me get through the days, these seasons of change that could easily crush me if i didn't have that familiar hope to cling to.
i cling to hope, and faith, and love....
they are the lifeboats that keep me from drowning when i just don't think i can swim one more second.

i miss my son.
last year he was in my arms.
this year i sit at his grave.
this year Sissy holds tight to her memories, instead of her brother.

this year is hard.
but we will never give up hoping.
i promise you, sweet boy.....we will always have HOPE.
mommy loves you, buddy-boo.
happy Sunday to you.
<3