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