Jacobs Grace

I am a mom. I have a voice. My story is different. I started my adult life ready to do and have it all! High powered career, kids and travel oh do we love to travel! My world changed April 2009. I was in my dream job, a baby on the way. Our family was complete one girl one boy. Friends were just around the corner in our neighborhood and we were flying high. The words came so easy off her tongue, "I know it's your grandads funeral but I knew you would want me to call the moment we got the results, Jacob does have CF. Call the office Monday so we can set up more consultantions." In one moment all I had seemed to just be lost. The man who raised me to be fierce was gone. The hope of "normal" was gone. The most scary words were uttered. In that moment I changed... I had my pitty party. I threw a good one. I screamed at God why me? In those moments leading up to his birth I thought I had my fight back. Looking back now I was just going through the motions. However I was heavily relying on an undeniable faith. Not really aware that I was. 

June 30, 2009... I think my sister knew what lied ahead. I just had this surreal calm. The room was full of doctors 3 to be exact. 3 nurses and a respiratory therapist. I remember Dr Ashby looking up as I was pushing and very calmly saying Brenna. All of the sudden Brenna sat on my chest, helping me push Jacob out. Months later Dr Ashby at church came up to me, " To this day I don't know how you got that baby out" Jacob Ryan Shelton was born 8lbs 11 oz and a belly that was 43 cm around. He was barely breathing. The nurses let me touch his face making sure I didn't bump the tube before they took him away. I had to be given more epidural to be repaired. They wouldn't allow me to go seem him until I could stand and walk. I remember mustering all strength. Just take a few steps. I was determined to see my baby. I needed to know just what we faced. There he was tubes and lines everywhere. My emotions were still so surreal. As I came back to my room I remember my sister looking up at me "You can't feel your legs yet can you" "Nope"....

The pain I felt after giving birth to him was the worst I have ever felt. I look back and think my physical pain was also my heart as well. Day 2 of life it was determined his bowel was ruptured. He was taken to surgery for it to be repaired. You know you have a good surgeon when he prays with you before surgery.  That surgery went well. Know one knew however just how much lied ahead. He seemed to be healing fine, but was yet to poop. From the day Jacob was born people have prayed for his poop. Who would have ever thought we could pray for poop? One week later his bowels ruptured again. I will never forget that scream. His pain was so obvious so undeniable. I will never forget it. The nurses were so busy his nurse looked at me and said can you be nurse? This was the first time I turned off mom and turned on nurse. It was the first it will and was not the last. As a mom and a nurse you learn how to turn it on and off. I praise those mommas who do not get to learn all I have and still must be nurse. They are quickly trained to go beyond their comfort zones. Learn more than they ever wanted to know. It's not easy but so rewarding. 

My child came back broken. Not together. Healing had to begin. It was one of those he will either survive and heal or he won't. No grey. He had already been repaired without success. This was our last shot. 6 weeks we took a few steps forward and many backwards. It began to feel as if my baby would just live in the hospital. This was our new normal. His sister had never met him. She just knew pictures. My sister and I would sing to him. He loved to hear our songs. One day as I sang Amazing Grace at his feet. My angel appeared. She was the house keeper covered in tattoos. She wrapped her arms around my body laying on his isolet. "I am to tell you he is going to be ok"... Never had someone said he would be ok. There was hope but nothing more. In that moment I knew Jacob was God's child I was to protect and nurture as he molded my son into a life changer. 

The hardest week of my life was the week after his second repair. Trusting God to heal Jacob was a tough walk. Leaning on his ever presence and not getting frustrated proved to not be an easy task. My heart cried out that surgery must work it just had too! Never in my prayers had God said Jacob wouldn't be healed. My fears came with was this the time he would be. The most glorious feeling was that first poop. I have never loved poop more! Bringing my son home 2 months after his birth was such a rejoicing time! Being home and becoming a family of four felt just right. We easily settled into treatments and medicines, dirty diapers and bottles. However it always seems with CF it is one step forward 15 back! Just a month of us being home. Jacob was back in the hospital. This time it was his lungs. All the bad bacteria from his bowels had made their way to his lungs. At 3 months of age Jacob began inhaled Tobramycin which we continue to this day. 10 days of IV antibiotics blood cultures and hospital beeps. No fear is greater than finding yourself back in the place where you nearly lost your son. I look back on our time there and it really is a blur. I remember fleeting pieces but the mass majority escape me.

 Never in Jacob's life have I truly gone through anger with God. I mainly feel guilt. Everyone says the guilt is nonsense, but I still feel it. Cystic Fibrosis is a genetic disease. Plain and simple I gave him this battle. That is a hard thought for a mom to swallow. You spend your whole life dreaming of children and then the unthinkable happens. The most glorious revelation however is knowing God is working so vigorously through our story. He provides new insight every time I write, every time someone sees Jacob. We have given a new face to this disease, a new generation of warriors ready to take on this mighty fight. 

I struggled for a long time with seeking approval of our story. I would sit and hope people would like my status or give praise. I think I was looking for validation that I was in fact following my calling. I still battle that demon some days. However, God proves it in all the ways he blesses me when I write. Something amazing will come my way. I will receive a message from someone. More importantly I look in those big blue eyes that I can't keep up with and know this is my story and it needs to be told. I see it every time I get a pity comment and I can exclaim victories of Jacob. He is slashing down the stereotype of who he is supposed to be! He shouldn't be able to keep up let alone be good at sports! In all actuality sports are good for him. My favorite though is the power he sees in my writing. Momma did you find a cure today? Momma what did you say today? If that's not power in a calling I don't know what is. 

I received a compliment today. I don't really know how to take it. You see for me treatments are life. The give him life and without them they take away life. They are hard at times, fun at times and sometimes they just plain suck. My friends and family are the best though because in the moment when a small piece of what Jacob deals with happens to them they think of us. They recognize the struggle. They see how hard we work and what we do and in those moments we uplift them. No they don't have the disease but in that moment they become stronger. They tell themselves if they can do it we can do it. For that I am so grateful. Those moments don't make me hate CF. I actually begin to see why God put us on this path. The stirring becomes strong to speak up and help more people. They don't have to have our disease they just need to see that any struggle can be conquered. They need to see a faith stronger than the one stirring in them. When they see that they take that step that leap on step closer to God. Running to his arms in trials is not easy. Watching others run makes you want to join. When you rely so strongly on him the mundane tasks become easier. The devils voice that much smaller. Your path and destiny become more focused. It becomes easier to arise and be bold in your statements so that others can see the just reward. 

Never in my wildest dreams would I see myself at a podium speaking. That was until CF made the rising occur. Of course now I know that feeling the passion comes from my great God. Today I was validated my words are touching people just as I prayed. I felt for awhile I was placing my dreams on others, forcing myself to a mic. One person who listens to thousands of speakers says it's good and validation arises in my heart. I have felt his calling so big but doubted myself. Doubted how good was I really? Was I touching hearts? Was I inspiring others to stand up and take a stand? Maybe however God is rising me up further. There are people who need to hear. Who need to have their faith restored. I am His vessel he is not mine. I am merely the voice you need to hear. You need to hear you matter to one to Him. Your fight isn't wasted. Our battles my be different but the fight is the same. One day you will look back and see how big your mountain really was and all you accomplished. You are fearfully and wonderfully made. 

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