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, September 16, 2012

Holding on to HOPE…

So now Brynlee’s journey is out in the open…and I’m glad that it is. I’m very glad we took the time as a family to spend together, in privacy, adjusting to all that has happened these past two months. but now it’s time for some clarification.

we do not and never have for a MOMENT regretted having another child. We will never regret that decision. Brynlee is an absolute joy, and although she had a rough beginning, that in no way determines her future health and outcome. Those in the CF community know very well that CF is a spectrum disease. It effects each individual uniquely and differently, and so although Conner's health was poor from the start, there is no indication or expectation that Brynlee’s health will be the same. It simply doesn’t work that way. It’s also important to remember, Conner had another disease on top of the CF that made his ability to move and clear his CF mucus impossible (which is what devastated his lungs)…but beyond that in my opinion, it was never his purpose in life to live beyond when he did. I wished that it was…lord knows we miss him every second of every day…but his purpose in this life doesn’t ever have to make sense to us…only to God. I have full belief that we will be with Conner again in the blink of an eye…and all the pains of his passing will become a distant memory to never be remembered again. hallelujah for that!

having her diagnosed with CF was very difficult…but we know this disease inside and out, far more than perhaps others even with the disease…we’ve lived thru the worst of it, and we’re still standing. we have watched the therapies improve and new therapies being discovered these past two years and we know that CF soon will be a disease of the past. and I will never regret adding sweet brynlee to our family…I’d rather LIVE…really LIVE life and give our daughter life…than live in fear of a disease, letting it continue to direct our families path…CF doesn’t have that power over our family any longer. we’ve already beat the disease, because we took away it’s ability to change who we are as people, and as a family. it used the most devastating attack on our family…but we fought harder and won. One day very soon when CF is cured…I will look at my daughter with great pride and great joy knowing that we didn’t let CF scare us from completing our family…and never having the ability to meet sweet Brynlee. I know that day is coming.

having said that…

emotions are ever changing for us. we put doernbecher children's hospital in our past. we closed those doors, and I never wanted to be there again. so watching her being put in that incubator, being transported by a respiratory therapist we know very well from our days at DCH (doernbecher children's hospital), being admitted to the same NICU Conner was in at birth, having many of the same nurses we had with Conner, and ultimately transferring her care to the CF center that was his as well, was and still is very difficult. it brings back our fight with him. it makes us remember with each smell of that sterile hospital the battle we never were meant to win. I remember it all. so much of cf I had forgotten, or blocked out, because I remember Conner with love and joy, he was so much more than CF.

in those first weeks with her in the hospital I would cry many times a day…I just didn’t see any of it coming. when we got to bring her home four weeks later, it took until recently to get into a routine and finally feel like we can do this…to get our heads back above water…and once again kick cf out the door of our home. it is simply a small part of who brynlee is…but it has nothing to do with what she will become. from birth she’s been more alert and wide eyed to this world…many commented on that continuously and she’s been smiling since two weeks old…big entire face smiles…and I know why. Conner’s very near to her. they are knit together and he is her protector. like Conner, I see a baby who looks to have an older spirit. a wiser than her age, soul just as Conner did, and just as I see with so many children battling various diseases. they seem to know more than we do, and as they grow, they appreciate life and breath more than us “healthy” adults do. there is something beautiful and unique in children with special needs and conditions requiring much care. and those who are lucky enough to be blessed to call them their own children know this as a fact.

because we are blessed.

whether or not brynlee’s cf will hospitalize her, or cause her bumps in her journey, or whether it will simply be two initials that cause us to go to a clinic once a month is yet to be known, but either way…brad and I are called to love her, care for her, and raise her as if those two initials didn’t define her. because they don’t. brad and I, and all other parents of cf children are blessed beyond belief. not everyone is strong enough to carry that burden, but we are. we were chosen…picked from a crowd of millions and millions of people, because we alone are strong enough to handle it. what an awesome privilege! what a blessing.

emotions come and emotions go…any diagnosis brings upon a sort of mourning or grief over what we thought we were getting into. I’m humbled to have a second chance to kick this diseases ass (pardon my french, but CF knows I’m fighting to win), to add a beautiful daughter to our family, and to honor Conner’s battle by watching Brynlee thrive and provide every single treatment possible for her, and this time around no is not an answer. we’ve seen the bad…we’ve lived thru the ugly but this time around we see a cure. we see victory. and just as her name suggests…in brynlee we see nothing but

HOPE

I dare you to truly LIVE…God did not give us a spirit of FEAR…but one of HOPE and assurance…

hold on to his promises…

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11 comments:

  1. So true and well said! I truly feel blessed to have my 3 cfers and they have taught me more about life and love than anything has. Congratulations on Brynlee! She is beautiful and perfect just the way God wanted her to be! <3 <3 <3

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  2. Sarah, You don't know me, but I stumbled across your blog about a year ago. I, too, am the mother to a little one with CF. You have an amazing ability to actually convey your feelings with words, and I admire that so much. Many of your posts have inspired me so much. And just like you, I am determined to not let CF win and change who we are as a family. It has taken my husband a longer time to come around, but we are finally there and we are excited to continue our family with faith in the Lord that His will will be done. I'll admit, reading about your journey with Brynlee the other night did scare me. I started questioning if I could really do it all again. But you are right--in so many ways you are right! CF will not have power over us and we will not let it win. We are blessed, in so many ways. I pray that God will bless you and sweet Brynlee. She truly is PERFECT! Thank you for sharing her and your journey with us.

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  3. There is so much I'd love to say regarding what I feel the Lord has shared with me about your sweet bundle of Joy but it's so hard to pick the right time trying to be sensitive about emotions and timing. Instead I remained quiet... But reading ur post I have no doubt God is revealing similar things and aspects about cf Brynlee and future purpose within this world within your family and lives of others. You truly are strong and have been blessed. You inspire so many with ur strength ur wisdom love and words. Always thinking of u and praying for you...your childhood friend from Georgia~ Brandy

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  4. Very well said, and good for you guys! I love that you keep on keepin' on :)

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  5. Sarah, you truly are an amazing woman! I love to read what you write. I am not affected by that horrible disease, but your writings could relate to anyone who is suffering some horrible thing in their life! God Bless you and your family.

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  6. She's so cute, and I think she looks a lot like Connor.

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  7. Congratulations! She is gorgeous!

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  8. Brynlee is beautiful. (I looked at the pictures on your previous post too.) She is a very special and brave princess, and I totally love her already. I think it shows for itself that God has entrusted you with another of His extra special children.
    She couldn't have a better mother, father or brothers' than you guys.

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  9. Hi Sarah. My name is Venessa I have just come across your blog. I have a 10 month old with cf and needed to here about how others are fighting against it. Thank you for your blog. I am Canadian so it is also interesting hearing differences in stories between countries. Your little girl is beautiful and am excited to follow her growth.

    God is good all the time and I grasp and lean on that.

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  10. You are so right, nothing can beat you unless you let it crush your spirit! You have an inspiring outlook.
    I would never have guessed she went through all this the first month from Facebook, and seeing her in person, she has such a bright smile. Her future has much promise : ) and God has a way of revealing his plans through our weakness. When things are out of our hands, that's when He can take over.
    Your family is amazingly strong! Thank you for sharing your heart!!

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