we got by with a LOT of help from our friends…

It’s the 25th…well close to the 26th of June now…so my son has been gone over a year now. this was without a doubt the most difficult week yet. I don’t really have the right words to explain it all…I wish it just made sense. but not much does these days. he’s gone. we’re not. and making that transition is horribly difficult and incredibly painful.

his day was as nice as it could be. the very best of people surrounding us (with a few exceptions of people who were out of town) and pastor gary spoke a wonderful message. and the balloon release was breathtaking. we had a very relaxed day then at our home afterwards with the sounds of childrens laughter and family…

we made the most of it….

I’m very glad that this week is now over…

thank you to our family and friends (extension of our family) for being there for us from day one…we are so grateful for you…

 

Love Love Love

So many memories, so much heartache…

I cannot believe it’s been close to a year. my mind keeps pulling me back to a year ago and what we were doing. he was alive, but struggling. he is free now, with a body not even I can imagine it’s perfection…but it doesn’t change the pain. I will always be grateful for the time I had with him. for being chosen to be his mother. I will be thankful that breathing is now easier than ever before for him. but I will always be broken that he’s gone. I will never be ok with him not being here in the flesh for me to hold. that’s a mother’s job. to love and protect. and what can you do as a mother if you can no longer love in the flesh the child that means so much to you…and what good is it when you’re a mother and you couldn’t protect him. he had to leave. his life journey was complete. I can’t lie and say that I’m ok. because I’m not. this week is no exception.

every day of this week I’ve been vividly remembering where we were a year ago. what we were doing. the fight that was nearing it’s end. I’ve allowed tears to come when they need to, regardless of where I am or who I’m with…I’ve accepted that I’m in my season of grieving. that I can’t keep faking the smile that covers my broken heart. that I need to feel the pain…and feel gods arms of comfort. I need him to protect me. I need his grace and compassion. his peace and understanding. his strong arms to carry me. because I am barely surviving right now.

do you even know how much I miss doing a neb treatment for him? how I’d do anything to have that annoying lineup of vials and syringes, and neb cups and medications laying out on my counter to prepare for him? to hear the humming of that huge oxygen concentrator. to see that sweet face. to hear his squeaky little voice. to feel his skin next to mine and smell the breath from his lips. his breath that represented so much pain and so much fight. I’d give anything for that again. to remember what he felt like and smelled like. to remember how his face looked when he’d tell me he loved me. I’d give anything to trade my day filled with denial and constant busyness for a day of determination and purpose. fighting that damn CF that invaded his lungs and took over our lives and left us empty handed. I’d give anything to hear Hunter and Conner fighting. I’d give anything for one last picture. I’m so sick of seeing new ones of my boys, and only having old ones of Conner. no more new pictures.

I’m trying to learn how to enjoy the journey and embrace the process. because there’s a reason my job on earth’s not finished yet. I just feel so far from Conner this week. Friday holds that dreaded date….but thursday is the actual day he passed. 365 days gone. two hard days in a row.

somedays I just wish it was all easier…

or a nightmare that I can wake up from…that my son will wake me up with a kiss and a hug and the pain would disappear…

Love Love Love

No it’s not right, and No I’m not ok

It’s one of those nights where I just need to write. emotions hit me like a ton of bricks and I need it out of my head before it explodes. conner’s death-aversary, or angelversary, whichever you like, personally I hate them both, is next week.

I’m in shock.

I can for the first time look back to a year ago and truly FEEL the pain and the emotions we pushed aside or buried inside ourselves when we knew the end was looming. how else could we have made all those funeral arrangements and had a casket made if we didn’t bury the hurt? well I feel it all now. I feel like I’m suffocating. drowning in emotion. but somehow I function. I’ll admit getting out of bed the last month has been a chore I’ve never experienced. it’s like each of my limbs weighs a thousand pounds and my brain tells me to get out of bed, but my body won’t cooperate. many days I can barely get out of my comfy clothes…let alone my kids. if it’s not of the utmost importance, then it doesn’t matter…I’m in survival mode. in the last year I’ve maybe cooked 25 dinners. emotions have driven me to the point of exhaustion.

my son is gone.

really, really gone.

how cruel of a world do we live in where a mother is helpless to save her son from a disease and many people walk these streets without a care for anyone but themselves and their own instant gratifications without any reprimand. it just doesn’t make sense.

god’s plan.

I truly have become a better version of the old me…and I’ve learned so many difficult lessons about who I am, and who I am not….but wasn’t there any other way I could’ve learned these lessons? with my son by my side instead of under my feet at a cold cemetary? without having to watch him struggle, and gasp to breathe and die right in front of my horrified eyes? I will never forget the looks on his face of desperation that day. isn’t that unfair? cruel even? I will never forget it…

thinking that with my son’s passing, and getting rid of all CF related junk in my home, every nebulizer, all medications and supplies you name it…but not realizing that CF will never leave my home no matter how much I ache for it to. it still has power over me…even in his death. I thought it was gone, but I know now a year later that it’s more present in my home now then it was a year before. it’s everywhere. it’s tainted everything. everytime I ache for my son CF is there. everytime I find a leftover medication it’s there. when I grab an extra cup in the morning or a plate at dinnertime, it’s there. every single tear I shed on my pillow…you better believe it’s there. it’ll always be with me. some invisible glue that can never be undone. permanent. always there.

nearly every goal we reached this past year only became so because he’s gone. We’d never have had the time to do many of the things we do now because CF took so much of our precious time. I wish everyday for just a moment with Conner. just one moment. the love that I’d be able to give him in one moment now, is more than I ever could’ve when he was alive. heavens gain…my loss. and the biggest loss of my life. the most defining loss of my life. one death taught me right from wrong, hate from love, tears of sadness from tears of joy, important from unimportant, and even the meaning of living, not just existing.

ironically now…all I seem to do these last bits of time (seems I have no concept of time anymore) is exist. yet somehow god helps me to function just enough to fake it thru the day. “fake it til I make it”

survival mode.

he’s gone….oh Lord what do I do now….

cus he took my heart and my peace with him…

is this really all worth it in the end???? only God knows…

and since it’s the only way I get to be with Conner again…I’m gonna live to find out…

stop existing…stop making excuses…stop all the nonsense…be grateful, thankful, joyful and loving.

living is about so much more than merely existing…

cus anything can happen in the blink of an eye…life can forever change in one tiny moment

LOVE LOVE LOVE

Sooooo tired…

I have not been sleeping well lately.

Mind has just been on a never ending thought rollercoaster. about everything. school, conner, summer, conner, money, conner…it goes on and on. it is so exhausting to say the least. I just cannot believe he’s been gone so long. see I can tell people he’s gone…and I know that he is…but my heart doesn’t connect it when I speak it. so it doesn’t hurt, that’s how I can talk about his death without tears…but when I stop and actually THINK about him truly being gone, I lose it. or if I’m speaking with someone…most times when I mention conner in a conversation, or his death, people just skip over it…but when someone actually is willing to talk about it with me, then my heart connects it. it becomes real. I thank god that he’s provided me with that protection. a coping mechanism. because if one had to deal with the full grief all at once, I don’t know if anyone could survive it. little bits here and there are hard enough to deal with….I can only imagine what it would be like all at once.

I lay in bed wide awake and I think about conner a lot. about good times, about hard times…but my mind won’t let me remember june 24th. the little bits and pieces that I can recall are like they happened yesterday. I remember where I was standing when I was transfering his care to hospice. I remember the chair I was melting into when the funeral director took my son out of my home covered in a white blanket. I remember the look in his eye…that will haunt me the rest of my days. I remember most everyone who came over, but so many people were in and out, and pastors came and prayed, and so I don’t have a clue who was physically around us just before he passed away and then after when they came in to say goodbyes…but anymore then that it is simply too painful.

even that is too much to think about cus tears are pouring down my face just remembering that. I truly, cannot believe it’s been a year. I dream of him often, he still leaves lots of red out for us in the most unexpected places, and sends remarkable people into our lives almost daily. it amazes me how much his story has impacted others, and how far across the world his LOVE has reached. I love to google his name and see it mentioned on many pages. it’s really what life’s all about.

leaving a legacy.

making choices each day to speak life or death into those around us. every decision we make, and every word we speak is an unconsious choice on how we will be remembered long after we’re gone. our legacy. I’ll be the first to admit that the me I was before he left is someone I’m so glad to have moved on from and left behind. I would’ve been ashamed of the legacy I would’ve left. and now…everyday I am very aware of my actions and words, and I’m very intentional in my love for people, especially those in hardship. I now know the power of our one life. the power in a legacy. can you imagine that a 7 year old boy with two horrible diseases could teach a grown woman these lessons? god is truly good. because in our worldly standards a kid is simply a kid…not always seen for their full value and potential. I’m proud to say that I had part in raising a fine young boy who knew his purpose, and left behind a legacy of love and not of hate. compassion for those who suffer instead of turning the other way. someone who made it 7 years beyond what the OB’s thought he’d survive to fulfill his purpose and leave his stamp on this world.

all that makes me miss him even more. imagine if I’d known while he was alive the power my little warrior carried. the knowledge well beyond his years he would bestow on thousands of people. the love he would show. the lives he saved. the many who returned to god after hearing of his story.

he left such a gaping hole in our lives. it can never be filled. though by our worldly standards a year should have us well on our way to recovery…or some even say not to let grief tear us down…to those people all I can offer is this simple thought. a child dyeing is something we will never recover from, yet we will learn to live with the pain everyday and we must let grief overtake us when it needs to. we are up and we are down…and it is healthy to feel it to try to make it thru the day. and though he was a small child in our home…he held a large presence in our family of 5. his voice was loud and happy, his medicines and oxygen buzzed thruout the house like background music, the laughter of 3 little boys has dwindled down to 2…and it’s noticeably different. it always will be. its unhealthy to deny the pain…and to deny it would be saying that he didn’t matter…that his life didn’t hold enough value for me to forever feel the loss and pain. and that is simply untrue…you grieve deeply those you love the deepest, and there is no greater love then that of a mother or father and their child.

what a legacy he’s left.

what a hole he’s left.

I’m just glad I get to chose to leave a better legacy then I would’ve before and I dare you to do the same…

 

now to try to get some sleep….

 

love love love