My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!



Love Love Love

Always Always Always


Sunday, July 31, 2011

Contentment is foolishness…

Not a single day goes by where I don’t think of Conner at least a million times. his presence and memory envelope me in everything I to, every place I go and never ceases. I miss him terribly. I don’t too often allow myself to wallow in the pain, or even think about the deep emotions that are behind the phrase “my son has passed away” because that’s truly an easy phrase to say…as long as you don’t connect it to emotions. but in silence and stillness I allow myself to connect it. to feel it. and it’s just so intense I swear its like he just left yesterday. I’m used to the pictures of him hanging in our home, I’m used to the medications being gone and his room remaining empty…but connecting the pain to the truth. reality. it’s still too much for me to handle. I believe that there must be a million silent suffering parents in this world. in the craziness of this world, I know that children die every single day. parents openly grieve. but then slip into a silent suffering. a pain that is too deep and too intense to even talk about to anyone. because nobody will understand. nobody ever could imagine it. in these moments when I sit and just think of Conner it’s still debilitating. and he’s been gone 13 months. really?

can that possibly be true?

maybe Ive fallen for the common misconception that in this life we should strive for contentment. to find a peace and happiness in every aspect of our lives. I see the importance of balance and tranquility, of a calm soul and a peaceful heart…but this world is a very dark place. we’re constantly bombarded with stress and everyones opinions and problems. we’re too busy because we feel the need to keep moving, maybe as a unconscious coping mechanism to avoid hearing all the negativity that is so readily available for our ears…whether we ask for it or not. this world is full of criticism and harsh words. I think there’s a point to it. and I think it applies to all aspects of my life as a grieving mother, a mom to two wonderful sons, a wife and a person. here’s my great secret…

we’re not supposed to be content on this earth

God doesn’t want us to be. that’s the only way this constant pain in my heart makes any sense at all. I’ve felt so isolated and alone with these feelings and emotions…and then I realized, that discontentment to this world and all it has to offer us…means finding contentment for the world that’s promised to us after all of this…

I have always known that I will never get over Conner, and that the pain would one day magically disappear, but I never took it the step farther as to why it wouldn’t. why it shouldn’t. for if I skip over my feelings and try to find earthly contentment in what’s happened in my life…then I miss the whole point of life.

the yearning for something more

something only God can provide. He’s promised to save a place for me if only I trust in Him and follow Him. For me it’s easier than ever because there’s a precious soul whose waiting for me there that I must not let down. my life and soul depend upon it. and I must lead and guide my living sons in the same manner so we will all achieve our hearts deepest desire to be a family of 5 once more. but this time forever and ever. and always, always, always.

God doesn’t dole out punishments to us nor does he want to see a single tear shed from our eyes. but what he does want is for when the storms come…the negativity, the loss of loved ones, the unhappiness and despair, because we all know they will come…He wants us to hold that pain and truth dear to us to remind us just how impermanant this life truly is. to help us yearn for the eternity that’s been promised. lets face it, we’re all one text or call away from a pain that has no cure. a call that will stop the world from spinning and challenge everything you’ve ever believed in your life. and choosing the pain as as a stepping stone to something bigger that God is yearning to show you is all I could imagine doing. and believe me it’s not been easy. I’d give anything to have Conner back. but I know how I used to be, the person I used to be. the things I used to do. the contentment I had in this world. my assurances of tomorrow. and now…a child of 7 has taught me more this past year about the purpose of our existance, and I know for sure that I never would’ve “gotten it” any other way…

so I cry and grieve.

I yearn and I hope.

I hang loosely to all that this world has to offer

and cling to the promise of a place much greater than this.

and I realize that being content in what this world has to offer is settling for less than what God wants for us.

and I’d rather have that instead.

 

Wednesday, July 20, 2011

Days go by…

I hate days like today when I can feel the void of his presence. I hate when I just sit and I know he’s gone. Feels like forever, yet feels like just yesterday at the same time. old pictures and old videos is all I have remaining that I can hold onto when I have days like these. I look at my counters and how bare they are. they used to be stacked high of medications, vials, IV flushes, alcohol wipes, nebulizers air drying…but no longer. I keep finding remnants of the life I once lived scattered in random places. I found an inhaler and his spare MICKEY button for his Gtube. I found syringes. An over abundance of liquid ibuprofen in our cupboards because of his high fevers his last few living months.

but what I really want?

to hold him. just to feel him. touch him, smell him, kiss him, and never let him go. to see again that goofy half missing tooth, half HUGE tooth smile that melted my heart. to hear his sweet voice, and to watch him light up when his baby B walked in the room with his “squishy cheeks”. to listen to him teach Hunter how to do all things boy…and I would give anything to hear 3 kids fighting over random, meaningless toys instead of just 2. the silence is the killer.

one year doesn’t really mean anything in grieving. it just means that I’m used to the ache. the constant mind-wandering, the constant…reminders that oh yes, infact, he is gone. it means we made it thru the holidays in one piece and we survived D-Day as best we could. but the pain…stays the same. hunter…my sweet middle child Hunter was not meant to be the biggest brother. it’s been a huge transition to be the big boy in the car, teaching B how to say different words, and all that goes along with being nearly 3. and it just breaks my heart that B will never know the Conner we adored. The Conner that causes Hunter sadness so often. “why did he have to die mommy…” uh…I can’t explain how my heart rips into even thinner shreds each time Hunter asks me that question, or cries for his brother.

there is purpose…and I have faith that there is…but pain…I’m just tired of hurting. God has extended me farther this past year then I could’ve ever imagined. he’s provided amazing support for our family and positive people to be there when we need to be built back up. For those blessings I am thankful indeed.

we’re heading into vacation without him. everything is now without…

I hate being without…

it’s the hardest chore ever to try to learn to feel whole again…all the while knowing I never truly will this side of heaven…I’m a mother without.

without

without

without

Love Love Love

Thursday, July 7, 2011

meaningless

“Man is not perfect. and a free choice may be good or bad. That leaves man with a tremendous potential. a frightening one. that leaves man as a channel of light or a party to darkness. there’s no way NOT to choose…you either make a choice, or by not making a choice that IS your choice. God did not pick you to die.  rather, nature had its way. nature and man, neither perfect. but all of us subject to the processes they set in motion. how guilty am i? WHAT HAVE MY MANY THOUGHTLESS ACTS SET INTO MOTION? How many times have I done nothing and so abetted the darkness? how responsible am i?

and god.

Where is he in all of this?

he changes neither the acts of nature nor of man. we remain free. he created us free, and with that terrible freedom we live. but the moment we prefer the light, he transforms…HE TRANSFORMS NOT THE CIRCUMSTANCES, WHICH WE CREATE…HE TRANSFORMS US! He transforms how we see what has been there all along. it never changes. God never changes.

WE DO…”

I’m reading the most amazing book/journal. it is so inspiring to me and is helping me to not feel so different…I can read what other moms have gone thru losing their children and knowing that I’m not alone and I am not weird. I am normal. grief isn’t a one year or even five year process…it’s lifelong. I’m so thankful for this book. any mama’s out there needing a book of LOVE and understanding I highly recommend “Song for Sarah” by Paula D’Arcy.

Such emotions lately. So much going on bringing out pain that has been best left buried deep within me. only temporary those hiding spots are though. In this pain I’ve learned so much about life. I feel blessed to know these special secrets that only those in this “club” know. because before losing Conner I never would’ve gotten it. not even in the fight for his life. I thought that taught me a lot. not even close to now. a fight shows you that god is there. the fight shows you that people have a heart for good, or that they don’t. the fight teaches you that you are stronger and can handle more than you realized. but after the loss…that’s where push comes to shove. its so easy to pray for miracles and pray for peace. to pray for your childs health and for their pain and their life. that’s easy. it’s easy to have faith in god when your child is still laying next to you and the world still makes sense…

but after the loss…

the entire world changes. you’re not you anymore. you’re family isn’t the same family anymore…the missing piece causes an interruption in every aspect of who you once were. that person I used to be is a memory. a very distant one. each day I grow closer to who god is molding me and who he intended for me to be all along. after the loss, your forced to really chose god…or decide not to chose him. that’s where faith is tested and where you learn that there is no guarantees in this world…you see it just for what it is. you learn that you wasted so much time, even in that beautiful fight on things of such unimportance. because now…you have a full house it seems…only without that one it really is an empty house. everything becomes meaningless. it’s unimportant to your daily existence. here’s what I have now…a closet full of clothes taunting me. causing me pain. why? their only clothes…but they represent so much to me. His room doesn’t cause me pain. his toys don’t because the boys always shared all their toys so nothing is strictly his. but his clothes. hunter could fit into them now. but I won’t let him. I can’t imagine seeing his last clothes on anyone else. I’ve always passed clothes down thru my boys but these ones are different. they have so much meaning. I look at them and remember vividly him in them. even down to his underwear. I can imagine how silly it sounds. but what’s the importance of these clothes? it’s a lot like so much in life. we think is desperately important. like being on time. like having a perfectly neat and tidy home. like putting our kids in private school, never missing sunday school and making sure our children are perfect in the presence of others. while respect for others and manners do matter…the child matters more. you can’t understand it fully until you’ve lost it. I wish for you to see it now while you still have it. the child matters more. loving openly without regret. throwing the daily schedule out the door and living in the moment with your family. that’s what’s important. we put off so much for tomorrow…but friends tomorrow is not promised. do everything you can today to show your family what they mean to you. now the things that cause me pain taunt me. his clothes. his memory. like a fresh reminder of just what was a waste of time. what we put so much time and value into that in the scheme of life means nothing. now I have clothes, pictures, videos and memories. that’s it. how much time was wasted as he grew up…I was so secure in tomorrow. in the daily grind. I never truly got it. the no guarantees thing. now I get it. but now it’s too late. I get these dumb reminders in forms of clothing and photos of just how much I missed out on. how much I didn’t get it at all. life truly held no REAL meaning til Conner left. don’t mistake, my family and I have meaning…but not the shallowness of the previous…US. we’re different. we value a day. staring at drawers full of memories is a gut check. reality sets in. so much time wasted. spent on unimportant stuff.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.” (James 1:2-4)

I live by that verse. it flows thru my head many times thru the day. I try to keep telling my heart that this journey is a blessing in disguise. And for all the pain we’re going thru the glory on the other end will be worth it. I know it will. I’m just tired of feeling different. of feeling this constant pain. the anxiety. the tears that still come many times a day, out of left field it seems. I just miss Conner. desperately. I wish I had one more chance with him. Just one more hour…hell I’d take a minute. just to feel him, touch him, breathe him in…love him the way a mother needs to love her child. I wouldn’t waste my time with him, I know whats important now and that’s LOVE. not toys, or parks, or books, or playdates. just loving. embracing always. loving thru it all. love love love…I’d give my life for one more moment to show him what I’ve learned from him. I’m tired of seeing everyone elses smiling faces and I try to keep one on mine…but inside there is no smile. I’m tired of the internal, heavy, permanent sadness. the emptiness. the confusion. this world is turned upside down for me…how in the world can everyone else keep walking like it makes sense? how can they not see all the meaningless things they do? I cringe seeing people treating their children the way I used to….”not now…just a minute…when I’m done….” but….I needed to learn I guess that life can change in just one minute. because it did. I am still haunted by how in one day my life as I knew it was over. I never could understand how this life can be so cruel and take away a child from his mother. a mothers job is to love and nurture…and without a life to love and nurture…what does that leave you? I’m tired of the world thinking that because you have other children that should be enough to help you get thru…truth is that one does not replace another. love for every person in your life is different and each relationship is unique. two living sons does not take away an ounce of the pain of the child long gone…it never can. it’d be the same as saying to someone who just had a leg amputated that they should move on cus they still have another leg. well guess what…that missing leg…that missing child represents the emptiness that only those in our shoes can fully understand. one does not equal the other. but learning now about whats meaningless in this world does make me a better mother to my two living. I hug more than criticize. I kiss more than ignore. I live more than I exist.

I’ve learned to surround myself with people who speak life and not death. I’ve learned you are who you associate with, who you’re friends with. each person in your life is there by your own allowances. your chosing that person. so if that person isn’t a person who will bring you up and speak life and love into your days then what in the world are you chosing for yourself? your family? I’ve learned to keep my inner circle smaller than ever before. not many have access to the full me. In the meaninglessness of this world I’ve also learned that there are many in this world simply living to hurt. to bring darkness and cruelty into lives of others who will allow it. but they’re crafty in their scheme. they know their game well. they lead you to believe they’re one way…then they show you just how wrong you were in trusting them. I never would’ve believed it a year ago. each day I still struggle with believing that others can exist to hurt, destroy and steal others joy. because I’m not that way it’s hard to believe it exists. but it does. keeping my inner circle very small has really helped. there is simply a handful of people who know every single thing about me. who’ve walked side by side with me thru this journey. I guard my heart and I hope you do as well.

see how much my mind wanders these days? what a disaster. I am still waiting for my brain to come back to me. the simplest decisions are so incredibly hard and I have to focus and concentrate so much harder on the simplest of tasks because my mind and heart are already consumed. trying to get my brain to take on anymore than missing Conner and dealing with the pain is impossible. I have to have people repeat themselves over and over. my brain just doesn’t get it. all that’s floating thru my head is conner…and the pain. I wish it’d get easier. but can it really get better? I don’t think it’s possible to get over his death. and I know that I won’t so I am not trying. I’m merely surviving. each day making it out of my house fully clothed and the kids with me is a miracle. you grieve deepest those who you love the most so I will never hurt any less…I believe it will always be there. the pain.

I just miss him.

I hate looking at his clothes hanging up in his closet unworn…

just reminds me how I failed.

I’m tired of this pain.

dearest Connerman…take care of me from the heavens…hold me like you used to, be so close I can feel you…because mommy can’t do this without you…

055

love love love

 


Did You Know....

There are over 100,000 people, the size of a small city, on the transplant list in the US.

There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).

In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.

From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.

click here to join the organ donation registry

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