Me, just being…well…me

I don’t waste anytime lying. What’s the point in that? So I will just spew about what I’ve been feeling lately. it’s overshadowed many of my days, a very intense, strain of complex emotions delicately intertwined with real life, gotta get up and get moving moments. it’s been beyond difficult. it’s taken nothing less than 100,ooo% FAITH. because faith is believing in what is unseen…and all I know anymore is that without FAITH, my son died in vain. His life, his struggle, his mission, his death, all of it would have been pointless. for nothing. So faith is not an option for me, but a necessity. a requirement. everything thrown my way each day I look at it and decipher my best judgement on it all, looking thru heavenly glasses, not ones based on this temporary life.

faith…

ah…didn’t George Michael have it SO RIGHT? “cus ya gotta have faith, faith, faith…!”

anyway…

its been horribly difficult. living in the emotion. life continues to go by, there is smiles on my family’s faces, we’re somehow managing. here’s how I think. it’s not at ALL that the pain has lessoned a teeny bit, but more that we’ve learned how to manage this life. People’s lives have gone forward. we’re at a standstill. we’re not ready to move from the anger, sadness and despair of losing our Conner, but in the “realness” of life we’ve moved forward. Hunters grown taller, he’s getting smarter, and each day he’s one day closer to going to Kindergarten and he’s beyond thrilled to get to go to Conner’s big school! Baby B, has had two haircuts and those beautiful curls come back, a bit more subtely but there none the less, he’s getting taller, he’s moved up two clothing sizes since losing his brother. He’s getting bigger and smarter. Brad gets out of bed each day and goes to work for our family. He extends himself to others to be there for them, and he continues to build new or deeper friendships. I’ve grown in humanly ways as well, but all in the temporary state. See, none of this really matters compared to heaven. we’ve learned to numb ourselves a bit to allow for some of these worldly changes. but our hearts are still so torn apart.

my mind works in reverse these days. constantly wandering back to this date and that date. usually always to where we were a year a go. because that’s all I got left of Conner now. memories. those precious moments that I will never get back. it is a very hard pill to swallow to know that Conner’s mission was never to make it to 8 years old. to never go to 2nd grade. to never move to middle school. to date. to get teenage pimples and puberty. to never fall in love. this is what life is “about” to us. we believe that it’s our right to live these days of our lives like what we read in a book or see on a fake tv show. and it’s hard to keep putting trust in the FAITH that allows for a 7 year old to die, and some other person commit murder and get away with it you know? it doesn’t, nor will it ever make sense because we don’t have the privilege of seeing the big picture. but blindly following God and believing in His plan to prosper us and not to harm us, even when the plan causes tremendous pain, is nothing short of a miracle of faith. an absolute miracle. because it doesn’t make any sense at all.

Conner’s been on my mind all day long, pictures of him popping into mind, and songs coming on the radio that have special meaning to our family constantly. and each day reality hits my heart that much harder like a sledgehammer knocking out a wall leaving me breathless. HE’S GONE. his plan was never to live a long life. but a short life full of love and FAITH. and now my job is to grasp that concept, live in it, accept it and to make the most of the mess it’s created.

I have some amazing days. where I feel great, and loved and confident in who I am, and where God’s leading me. and then I have so many days where it’s so overwhelming.  there’s a huge difference in being overwhelmed and giving up, so let me be clear. I never have nor will I ever give up. it’s not an option. I rest my pain in the victory that has already been awarded to us. There isnt one person, thing, or tragedy that could separate me from God’s love and getting to Heaven to be reunited with Conner.

Yet, faith comes at a cost.

it costs you everything.

everything.

its being unwavered in your FAITH if Gods plan involves losing your son. It’s saying YES to so many hard circumstances. It’s not being ashamed to say that the plan of your life sucks at times, but that doesn’t mean you doubt HIS love. This life is all about pain and suffering. there are moments of sure bliss and times when you feel your on top of the world and full of worldly satisfaction…but it’s about knowing what to do when the pain comes. cus it does. it always does. its that tiny choice of whether or not to let out a curse when you hit your finger with a hammer…all the way to the most important choice of whether or not you have FAITH to stay the course and accept this world for what it is.

TEMPORARY.

Resting your faith in what is yet to be seen is so much more difficult than it sounds…but so much more profound than anyone of us can ever imagine.

Even knowing the truth of my future…the pain of today is still heartwrenching. Yes I know I will get to Conner oneday…not soon enough it seems, but in the meantime I have to accept that Gods not finished with me yet. Conner fulfilled his duties…he gets to sit by God and Angels and breathe with the most gorgeous lungs any of us can ever fathom, because he did his job well. but He’s not finished with my plan yet. My plan was always to outlive my firstborn child. To continue to raise two beautiful blessings with a husband who adores us all and to keep our heads afloat…always waiting with anticipation our next step.  But even knowing that, and not just knowing it, but BELIEVING it doesn’t make it hurt one ounce less. I’d give anything to be back a year ago with our family of living 5…well 6 counting Grover dog…loving each other, making the most of each second. recognizing our blessings in each and every fraction of a second. Just LOVING and getting to hold him. Instead of now going back and forth over finalizing Conners headstone. and seeing the kids walk past our home each afternoon from school…knowing Conner should be there too. The pain will just never cease. and anytime I think we’ve made it a step forward…we truly have taken two giant leaps backwards.

there is purpose in pain.

that I know for sure.

but living in it…I also realize that just knowing my future in heaven doesn’t make the pain of today any less…it just makes me want to get to tomorrow even quicker…

 

Love Love Love

an award?

RegisteredNurse.org

Just wanted to send a HUGE shout out and thanks for reading and keeping up with the Joneses. In Conners honor, i thank you ...

Love Love Love

The making of a wish…

 

Aloha…I feel I should say. today marks exactly a year since we flew into Hawaii’s Big Island for a week of everything Conner’s wishful heart desired. I can’t believe it’s been so long already. today brings me a lot of grief, seeing these pictures and remembering the emotions of that day. we left the hospital only two days before this pictures, unknowing if Conner would be ok to do this trip. I had many hard discussions with the CF doc and the Make a Wish staff, and it came down to 2 things. Doc said if there ever was a chance for Conner to go, it’d have to be then and the make a wish folks assured me that if he did happen to pass while in Hawaii, that it would all be taken care of. as much fun as and great memories we all have of that week, I intimately remember the constant fear I felt. watching Brad drag Conner’s o2 around, and someone constantly carrying Conner from place to place, his body was so weak and tired. I remember praying he’d make it home and this wouldn’t be it, and I still thank God everyday that we indeed get another few months with our son. the trip reenergized Conner, infact he stayed well for about 3 weeks after this trip, which was HUGE for him at this point in his disease progression. and when I look at this photo it tears me up to remember just how fast things faded after this. valentines to st patricks, birthday celebrations to a beach trip, to field day to his death. like the blink of an eye.

true grief is what this picture represents right now. because of the snowball that started with this photo. today I feel weak. I think that these past months have nothing in compare to what these next few months will be for me. his friends are turning 8, and he never will. it’s hard to accept that his work on earth was done so soon, and now we have to make the best of what work we have left to accomplish until the Lord says “well done” to us as well.  I feel so much joy some days, life goes well, the kids make me smile and I laugh more than I cry…but I’m walking around with the largest lump in my throat. constantly on the verge of tears. I just can’t believe he’s really gone, nor can I believe how much life has changed these past 6 months. I look at this photo and remember some of the people I had in my life at that time that I thought were so much different than they turned out to be, and I remember all the people just acquaintances that have since stepped into a bigger role in my life that I am truly grateful for. so to me, this picture represents pain, and hope, tears and joy, laughter and sadness. so many different emotions, and it’s nearly impossible to give them all a voice.

I feel I’ve come so far some days, and others I feel like he just flew away yesterday. the emotions are on the very ending of my nerves at the tip of my fingers and on the top of my brain crowding every thought all the time without fail.

I miss him so much.

so much it paralyzes me in pain.

I don’t write for sympathy, so don’t feel you need to give any, I write to release it all. to give grievers validation. to cause awareness of just what CF has taken from me. From us all. A person dies each and every single day from that horrible disease, leaving crippled, paralyzed parents in it’s wake. and it’s more than I can bare most days. some days I feel lucky to have the truth behind what life is all really about. I’m thankful that I can separate the realness of this world and the details and drama that many may never get past. I’ve forged a genuine relationship with God that many may never get to and just settle for the fake, “safe” relationship where it’s all give, wants, demands and take, never thanks, and fully relying nor praising. so in many ways I do feel blessed by all that’s happened. and I give thanks that Conner is smiling and can breathe and visits me so often in my dreams and during each day. but I long to hold him. I get to hug hunter, B and brad all that I desire, but never again Conner…not until heaven. and my earthly body is impatient, torn apart and unaccepting of that restriction. there’s not one thing I can do to change that. forever he is dead to this earth. forever. I know the truth and the glory that one day I will be reunited with him and with God and feel love and the hugs and kisses that I’ve been waiting sooo long to do, but it seems a million years away from now. I remain obedient in my tasks that God has laid before me, and I keep my eyes directly on that end prize…the glory that we all deserve and have a right to attain…but…but… god designed us as humans. impatient, ungrateful, selfish, demanding, busy people who want instant gratification…I wish so much for peace from it all. I read back to a few of the posts just days before Conners flight to heaven and I just cry…I had no idea then the pain his death would cause, I thought I could imagine my life without him in it…but truly…I had no clue. I gave birth to that beautiful 7pound 12 ounce beauty and fought and loved him and enjoyed him and raised him and hugged him while he cried and held his hands as we prayed, and it’s done now. it’s been done for nearly 7 months and I’m still fighting that reality each day…every minute and almost each second I’m awake. I’ve met so many amazing people since he left and I can only explain to them how wonderful he was, what a joy he was, how sensitive and compassionate he was, how brave he was, how he made me a mom… but they will never know it in anymore depth than my words. the initial grief has worn off…the grief that is numbing and a little more surface and disbelieving. real grief has sunk in, and it is so hard to walk with. to breathe with. to feel with. it’s a very consious effort to find a smile or a ray of sunlight and love thru it. it penetrates deep into every cell in my body. my entire existance and soul screaming that it’s too much to bear alone!  I can see why so many give up here. why some never step forward to try to navigate thru it. I see it because I too feel it. the world has moved on, and it’s just you and God. just the way God wants it to be for all of us. I wake up each day and say goodmorning to Him and I ask for him to make my feet light, and my soul at peace…and I pray for clear direction and for him to stick to me like a fly on fly paper. I can’t do it alone.

I just miss him so much….so…so much.

 

 

Love Love Love

Just one short year ago…

We were sitting in the hospital…on day two of what would become a very long admit in preparation for his Make a Wish trip…we were playing with the DSi on loan to him and having fun…oh I miss him so much

 

I miss the person I used to be…I felt a year ago like life was great, complete. Now I’ll never be complete again this side of Heaven. Ever. Theres a huge gaping hole that can’t ever be filled or patched up. I miss the loneliness of the hospital…the sterile air and the sitting around watching the clock tick away. I miss the grind of it all, knowing what doc was coming by, which volunteer was on call, the nurses shift schedules, even the food in the cafeteria. I knew it all…how pointless now. I miss dialing the number to the CF clinic, I miss strategizing with them over what to do next. I miss the fight terribly. I see pictures now of Conner and my heart just breaks, and I have to calm myself.

He’s gone, truly gone.

I truly don’t understand how it can all be over so quickly. like the blink of an eye.

his death redefined my life in so many ways that I am both grateful and hateful for. I truly LOVE the “me” that I am now on the inside out. I’m more sensitive, secure, loving, compassionate, understanding, strong, faithful, prayerful, and more aware of the minute to minute details many will never see nor understand the importance of. I understand the meaning of this life now more than before. I’m no longer afraid of death…I’m in no way ready to be done on earth yet, but with all my heart I know that when it’s my time I won’t have one tinge of fear or any second guesses. no regrets. no coulda-woulda-shoulda’s. I live life…really LIVE it. and somedays it’s living for me to simply get Hunter to school and come home and clean up and put my feet up a bit and just sit in the silence and dwell in the house of the Lord. Just rest in his peace and grace. So many questions, not enough answers, and all the time in the world to simply wonder. I’m re-evaluating who I have been as a mom and who I am now and am working toward. hunter is challenging me every step of the way, both in good ways and not so good ways. but in it, I’m learning the importance of it all. life. love. relationships.

I’ve met new people who have become dear to me and my family…and I’m learning to stretch my wings a bit. I just can’t get past the first lesson of it all, that just sounds so cliché but I know it to be true thru and thru…tomorrow’s not guaranteed. Conner is proof of that. one day doing ok the next day in and out of a coma taking his last breaths of this earth.

the new struggles are difficult. they are character forming that is for sure. having to really trust in God like never before having been let down so terribly since this time last year…not just praying as a chore but as a conversation. living the best way I know how and trusting God in the details. learning to live with my heart on my sleeve like never before and trying to find ways to tear the walls down that have been built so high and up for so long…learning to trust after being burned. learning to reach out instead of being isolated and lonely. learning to find balance and structure, empathy, and love thru it all.

being thankful.

living in the pain.

accepting the pain may lessen a bit but will never fully be gone…learning to live in it and to function in it. no simple task.

grateful that many Thursdays come without the sting they once carried…the pain still there…but the dread lessening over time…yet knowing that it too will come and go…last Thursday was fine, today…Thursday I am broken hearted.

learning to hear people for what they MEAN and not what they SAY…two very different things…a lesson learned over time.

a year ago we were sitting in hotel de-Doernbecher Childrens Hospital to have IV’s to get Conner ready to travel to Hawaii…for his one heartfelt wish. and now a year later…all I can do is miss him and wish to hold him once more…

Love Love Love