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


Thursday, May 31, 2012

Roller Coaster of life…

rollercoaster

I remember a time where I’d read different books or different blogs written by parents who have lost a child…and I remember being a bit envious when I’d see how long it had been since their child past. like they survived it, that they were still alive 2 years later even 5 years afterwards. I remember thinking how great it’s going to be to be in that position and to be free from pain and the constant emotional ups and downs associated with it all. yet why is it that we’re closing in on the 2 year mark and nothings changed? Conner is still on my mind all day long. I think of him with every activity we do or plan just as if he were still here and I needed to make the necessary arrangements. I laid awake last night which I’ve grown used to being 34 weeks pregnant…but it wasn’t because I was up to go to the bathroom or because I was uncomfortable, I was up thinking about all the medical stuff that seemed to have left my memory. it was strange. maybe that’s the only thing that has really changed in our lives these past years. there’s no more medical equipment scattered around our home, we don’t have to constantly plan out each day the day before, get the necessary enzymes, puffs, oxygen tanks, bolus extensions and formula and extra supplies that we once had to. I don’t have to park in handicapped spots and rush from the car inside our home to hook Conner up to the more reliable oxygen concentrator. I’m not going back and forth to CF, urology, GI and peds appts with him, nor am I having to plan for my other kids care because of the monthly hospitalizations. Two years, I just can’t believe it’s been two years. it sounds like such a long time, yet when it comes to being without Conner it feels like it was just yesterday. that time table doesn’t translate into childloss.

I feel such a struggle in my heart most days…where I’m feeling alright…but then Conner’s missing presence is always in the back of my mind. so hard to explain. best way I can is it’s like you know when you have a list of things you need to do for the day, you wake up, think about it, make a mental plan on how to get it done…and it stays in your mind so you can complete it. that’s conner to me. I wake up and realize he’s gone instantly each morning when I look at his beautiful face staring at me, I get up and get the boys going for school and think about what I’d be doing for conner that moment as far as treatments, or even waking him up with kisses and rubs like I do for my other ones, I drop my kids at school and think about how conner should be there too, everything. he’s always in my mind. and somedays its too much to take, while others I just push thru it and make it thru the day. how can it still be so hard nearly 2 years later?

Today I’m trying to get life in order for our baby girl due to arrive in about 6 or so weeks from now, yet I’m distracted. I feel such joy for her impending arrival…I know Gods hand and Conner’s sweet blessing are upon this baby and her arrival, everything makes such perfect sense. I just realized not too long ago her birthstone will be red (conners favorite color), so that’s just one more little gift from Conner so he’s always with us. But in the back of my mind I worry. I have the usual pregnancy nervousness at the end, trying to tie up loose ends, get things in order, and of course think about delivery and pray for a safe arrival, yet there’s more this time weighing me down. while I can’t wait to see her beautiful face and meet her…my heart is scared to death of how I will react if she looks like Conner. I know she will look like all of us, but I’m afraid it’ll be too much. I know as an absolute truth one new arrival doesn’t make the loss of one at all easier, they’re two different joys and blessings…but adding to our family with all these similiarities to Conner may be too much. I hope not. but if I’m being honest, that’s where my heart is lately. worrying. I’m afraid of being overwhelmed again because she’s due to arrive so close to Conner’s angelversary, that it may just be too much and I may break emotionally. I pray that I’m just overly preparing my heart for all possibilities. I’m so excited to have her here, to have a new joy, and at the very same time I’m scared of how we’ll adjust to all the similiarities emotionally. conner should be here. he shouldn’t be in heaven making these hopes a reality, he should be here…he should be 9, the biggest brother to three younger siblings, living, breathing. so hard to explain. it’s such a roller coaster….one moment I’m content, the next I’m sad, the next I’m worried, the next I’m excited…all in the span of a minute it seems. and I just pray that emotionally I’ll be ok and I’m just overly worrying about it now so that when she comes I’m ok. I know whatever comes, that God will carry me thru, he’s proved that to me more than I could ever explain. so I am trying to just cast my worries and concerns onto him, openly, honestly, and taking refuge in his peace.

yet thru it all I’m still standing.

so I need to give myself some credit for that. I’ve made the decision from day one that God is in control, I’ve allowed Him to lead me thru this emotional mess, I’ve followed his lead and allowed myself rest and given myself grace in his love, all of which are absolutely choices. I know, and I’ve seen some, go the other way and tried to get thru their grief alone, and I’ve seen their desperations. I too, feel desperate some days, and I feel pain, and I feel anger…but it doesn’t get the better of me, I allow myself these feelings and I give myself grace because I know that with God in my corner I’ll pull thru.

The whole point of me starting this blog over 2 years ago was to be transparent in the good, bad and UGLY, and to just be fully honest in my feelings. So I can’t possibly pretend all is “bright and shiny” all the time. Many have reached out to me thru this blog, I still receive emails and letters from people just finding Conner’s story and thanking me for the transparency, and I hear how it’s ministered to so many people going thru similar and not at all similar situations. So I just know in my heart that my feelings about this sweet girls arrival have to be honest as well. just knowing that by revealing my pain and my pursuit of happiness and joy is in some way helping even a handful of people, makes the pain more manageable. because it just shows it’s not about me. this pain wasn’t directed at me, to punish me and hurt me, or to break me. it was to help others and find strength thru it, find joy, go thru all the ups and downs and ugly emotions and beautifulness and grow. this is a journey I wouldn’t ever have volunteered for, nor would I let anyone I love volunteer for it either…but I feel a little peace knowing that it’s not all ugly, there is beauty when I look deep into it all, and I’m humbled that God felt strong enough in my faith to walk this journey in front of thousands of others to someway help his kingdom.

so here we are, nearly two years after losing our sweet son to Cystic Fibrosis, my heart is still as fickle as the weather…partly sunny with rainclouds in the midst…even thunderstorms…I’ve learned to embrace the ups and downs…but honestly thought that by now it’d be more predictable or easier. The lesson in that is when I read or hear of others grief journey’s years ahead of ours…I’ll never assume their figuring it all out, or have it all down. june 24,2010 I stepped onto the worlds longest roller coaster ride and I will never get off until I am called home for good, and I need to really embrace the ups and downs and curves and that sometimes it all comes faster than others…bleh…I used to love roller coasters…

blessings and LOVE

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