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, November 14, 2013

JOY. filled. HOPE

Crying.

Elated.

Satisfied.

Thrilled.

Emotional.

Empowered.

Vulnerable..but now…

Successful…

April came and after 9 months of fighting for her every ounce of weight gain we hit a wall. There was no more going around it. I wasn’t enough. her body needed more. I hated that struggle. the scale would literally raise my heart rate, cause me intense anxiety and I would panic. and I was placing her on one almost weekly in front of the watchful eyes of the doctors. I would see the scale go up and down, the numbers trying to calibrate accurately with a flailing baby on it…always moving. I would see a high number I’d pray for it to remain…then it would drop just as swiftly. I can close my eyes right now and see those red numbers move…and my heart still races. knowing what I know from the years of experience I have with this disease those numbers mean more than did she gain weight or not…those numbers directly correlate to long-term lung health and development of large, strong lungs…ones necessary to fight the beast. in April I raised the white flag. enough was enough. stepping in was no longer a thought. it was reality.

she was admitted into the hospital I spent so many years of my life in with him…fighting.

it was intensely difficult.

Getting the NG tube in was uneventful and I did it myself…surprised by how even so many years later how I never forgot how to. she needed it. I’m glad we made that decision. that was April 11th…my birthday.

the constant weight check appointments continued and each time my body would go into overdrive, my thoughts would race and I would internally panic until the truth of the number was revealed. had I done enough…the answer was almost always no.

hi calorie formulas, mixing at higher rates then we had to do for Conner…struggling to find a safe formula that didn’t cause her body to break out in rashes. trying 4 different infant formulas mixing at different ratio’s, timing digestive enzymes meticulously, watching every bottle go down, thankful for each one she would take because it meant less she needed by her NG at night.  The dietician always suggesting this would be a long term issue since she started out with such severe GI issues that required surgery at 5 days old. I tucked it away in my heart. I would ask for a new formula, a new higher calorie mixing rate, I wasn’t willing to settle. As Brynlee got to 1 and became more active it became increasingly difficult to get a busy, excited toddler to stop to eat, we did the best we could, we changed her to pediasure, then to pediasure peptide so her body could absorb it since it was broken down for her. she drank it, her weight improved, but the sheer volume she needed in a day was impossible. 40 ounces a day of it infact…5 cans. So each night our nightlight was the screen on her kangaroo pump that pumped that formula into her body as she laid comfortably in dreamland. she didn’t know any different. she’s been a warrior suited for battle since hour one of her life. the sounds the feeding pump make constantly bringing me back to Conner…and his battle. and how it wasn’t enough…but always pushing that aside. always focusing on Brynlee…telling myself her story is different…unique.

I’d take her to CF clinic every other week and each trip the scale was my enemy and the team had intense talks of a G-tube so her face could be free from the tube taped on it. I just didn’t want it, I’m not against G-tubes, they are so helpful for so many reasons…I just feel after my fight with Conner my biggest regret looking back was not trying more options. Just going with the flow of statistics and numbers. Not leading with my heart. Letting my mind stop long enough to listen to what my HEART was screaming.

My heart said NO. my heart said FIGHT. my heart said DON’T QUIT. My heart screamed ENDURANCE. My heart reminded me the race in the battle against cf is NOT a sprint based upon numbers…it’s a MARATHON of decisions based upon individual knowledge, circumstances and needs. My heart screamed to be PATIENT…

G tube talks remain a constant focus at clinic. Her BMI’s not increasing like they should be…”Sarah you know the importance of nutrition in the outcome….” there voices trailing off realizing where all of our minds are going…there it was. BAM! a ton of bricks thrown into my fragile heart. My mind said “Sarah do the g-tube or your daughter will not live longer than Conner…” let me clarify it’s not that I truly believed that…but the enemy has a plan to KILL STEAL & DESTROY…so his lies are smart, deceptive, and deceptively packaged discreetly in a message that bears general truths. As a mom whose walked the walk down the aisle in a church behind 6 men carrying my son’s 7 year old body in a hand painted casket I can tell you from my heart…in my mind these weren’t small decisions. I did not and do not take any decision lightly. They’re all life or death. My mind says 2+2=4 and there are no other answers. But my heart says NO…I can’t describe the pain better than one of the visits in the last few months I called the social worker in with us and kicked everyone else out. she looked at me and simply said…”sarah…let it out” and I just sobbed. uncontrollably. I felt so conflicted. damned if I do, damned if I don’t. was I being unreasonable…would I be able to live with myself if I was the one to take the firm stand of trying more options before just going with the crowd…would that be the exact decision I would later regret….am I causing her body to decline…I felt more torn, more vulnerable, more scared then I had in a very long time. She was able to calm me and ask me very legitimate, necessary, difficult questions. ones that HAD to be asked. and I had to get real and I ultimately decided that I needed to let my heart win this one. regardless of the outcome. I never did with Conner, I didn’t know better. I trusted the dr’s for 100% of their expertise. After all, they have the degrees, training and knowledge…but I’ve since learned that a doctor isn’t God…I mean obviously I KNOW that’s not true. But I had to shut my brain off and let my heart remind me that a doctor PRACTICES medicine, he doesn’t have the ABSOLUTE determinations. Only god does. (please know my heart to know I absolutely value and respect our dr’s, I’m not speaking down on ANY dr here, speaking from the freedom I found in my own journey) so I had the dietician come back in the room and the social worker mediated our conversation. I must also say our CF team is amazing and no one would ever purposely try to cause pain…I just did a poor job sharing with them how much my heart was involved…which involves emotions…I held it in. I told the dietician she needed to find a new formula. One broken down like the one she was on, but one where it was higher calorie so Brynlee could drink the volume she needed to all during the day because I wanted that tube out. she thought for a moment…and then I said “is there a pediasure peptide 1.5?” and her face lit up…”YES!” We switched her immediately. Because each can was 1.5 times the calories of the other formula she only needed to drink 24 ounces, or 3 bottles a day. Last month on the new formula her weight was catching back up, so I defined our new goal was to get her to take all of her liquid medications by mouth then I would pull the tube out as long as she continued to gain.

She had clinic yesterday.

I’m crying I’m so excited to share…not only is she taking all of her medications like a CHAMPION…but she’s drinking goal EVERYDAY and her BMI is over the 50th percentile!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The NG tube is PULLED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Her lungs are doing amazing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and she doesn’t have to go back for TWO MONTHS!!! She is such a champion. and I’m soooo beyond THRILLED for her! but in my excitement it occurred to me…god gave me this message…this experience…for you.

where are YOU feeling discouraged, pressured, so close to giving up…hopeless? despairing? What is it in your life that your going thru the motions with…leading with your MIND and refusing to listen to your HEART…? is it a job? a friendship? a disease? a marriage? My heart feels compelled to urge you to SHUT OFF YOUR BRAIN…break the lies your mind tells you…lies of the enemy that cause pain, confusion, anxiety and worry…and open up and spend some time listening and FOLLOWING your heart. Gods plans are to prosper you and not to harm you…to give you a FUTURE and HOPE! Listen to your heart…and weigh in the counsel of a third party to get the tough questions asked…and you will find your answer. then act on it.

this is a small victory for us. and I know that it will more than likely come up again…because I’m very educated in CF and I know it’s unpredictable, just like so many things in all of our lives. but what I KNOW FOR SURE is that when you follow your heart and it’s in alignment with Gods promises, you will see victory…in whatever capacity you need.

 

So don’t give up. Never settle. Don’t quit.

It’s gonna be worth it…if even for only a moment…the victory I promise you is sweeter than you can imagine and it’s worth it all!

I also decided it was time to not be so un-bright and un-shiny and my heart told me our journey isn’t about that anymore. So I changed the blog from notsobrightandshiny to joyfilledhope.com

LOVE LOVE LOVE

always always always

Wednesday, July 10, 2013

Happy 1st Birthday sweet Brynlee HOPE

Sweet baby girl…one short year ago you arrived into our family and changed our world forever.

Your sweet smile,

Your always happy personality.

Your deep love for your brothers.

You’re the greatest addition and have made our hearts grow larger!

A look back at how you’ve grown this first year…

It all began July 11 2012…

012

042

043

062

074

141

191

018

003

016

005

067

097

007

024

054

075

089

013

037

055

051

066

017

050

134

231

283

299

450

518522

031032

014

 

Happy First Birthday sweetness! And MANY, MANY MORE to come!!!

Love Love Love

Thursday, June 20, 2013

Fast forward 3 years…

Monday marks three long years. How did that happen so quickly…yet how did it drag on SO LONG? I’ve been reflecting this last week on just how far I’ve come and in what areas I still haven’t progressed. I’ve never felt closer to God in my life, and yet there are days where He still seems so distant. I’ve forgotten completely how Conner felt all snuggled up to me in my arms, or even the warmth of his beautiful skin that last day we spent together, holding on and loving each other until he knew it was time to go and that we would be ok. I’ve forgotten his smell entirely. Yet, there are some things a mother will never forget. I can blink my eyes and remember his beautiful smile. I can hear his laugh. I can feel his joy. I remember how he trusted in me to protect him fiercely. I will never forget the way he loved his brothers, and even how his hand was in naming his sister 8 years before her birth. I can recall his protectiveness towards all that he loved, and I will forever be in awe of his real, intimate, relationship with Jesus, something I strive to become more like everyday. A child at 7, knew where he was going, wasn’t afraid and shared it with the world. what a legacy. I’ve gained new perspective in so many ways. he’s caused me to grow in my walk with God, to be intentional about it with a sense of urgency like never before, in turn helping me grow into a person that I never thought I could become. a person who doesn’t even remember what I used to be. the mistakes I’ve made, the fights I endured, the brokenness, the depression, the loneliness, and the angry person who just didn’t understand how all of this was for our good. how all of this pain was ultimately for His glory. I don’t feel sorry for myself any longer. I don’t feel I lost Conner, I think heaven GAINED him. I feel privileged in having the tiniest speck of a part in his story.

please don’t say your “sorry for my loss” because I’m not the one who lost anything. in fact, I’m better because of it all. the greatest privilege of my lifetime is being chosen to nurture that beautiful soul while it was his time here with us. it was never gods intention for Conner to live a long life, rather, to live, truly…really LIVE a full life in a short amount of time. he breathed every breath as a gift because for his broken body, it was a gift. he saw an eternity without end while we only saw the decline of his health, he smiled without a reason in the world to. his body failed him, but His god did not. his god, my god, rescued him. my god freed him for a job well done. Conner lived to bring people to life and souls to god. what a tremendous calling on such a young child.

So, no, I’m not sorry for our loss. I miss him terribly…but not because of sadness, but because I got to be his mom. he got to be my son. I was witness to gods goodness, mercy and miracles everyday with Conner. A lesser person would’ve played victim in his ailing body…a lesser person would’ve complained of the 15 daily medications just to help him breathe, a lesser person would’ve complained for all the oxygen he had to lug around, the bipap machine he had to wear to help his lungs breathe at night, a lesser person would’ve been upset having spent more than 2 years of his life in a hospital bed, 30 admits, countless iv’s, tests, picc lines, two ports, a g tube for nutrition, and people always telling him there was nothing more they could do. a lesser person would’ve blamed God that he couldn’t run like the other kids, that he couldn't attend school because he couldn’t keep up and his body tired out too quickly. a lesser person would play victim to the mountain he was up against.

But Conner never did.

Because Conner knew what few will ever realize. He knew his time was limited. He knew what Gods unique purpose was for his short life and he LIVED and breathed it. He never blamed God. He found a way to be a blessing to all those who met him, cared for him and loved him. he did it all for Gods glory.

what a life.

what a tremendous blessing.

So rather than say your sorry for our loss…take a moment and reflect what Conner’s story has done to impact your life, however large or small…in some way I know it added value to each and every life reading this blog. and that is not a coincidence. never be sorry for that blessing…because I’m not.

I’m a better person having known and loved him, and view his passing as nothing short of a great healing miracle for Conner. A perfect reward for a life well lived despite the odds he faced. and while my body misses his presence here terribly, it doesn’t bring me sadness…it brings me the greatest joy I’ve ever known.

thank you Conner.

thank you god.

If you celebrate your “move up to heaven day” up there babe…may it be the best celebration ever.

I love you forever…always always always.

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