This Is His Journey
I have been impressed to share some thoughts and experiences that have occurred in my life recently. A few weeks after Adriaan was born, Josh and I were called to privately meet with his pediatrician. She had addressed her concerns over the phone, but wanted to talk to us in person. Adriaan's newborn screenings and later blood tests showed that Adriaan has Cystic Fibrosis. We quickly researched what CF is and tried to grasp what this meant for our lives. The State set up a 'sweat test' at Primary Children's Medical Center the following day. Since we weren't given much notice, Josh wasn't able to attend. I showed up holding my sweet baby boy, with fear in my heart. "Isn't this where sick babies go? Isn't this where children fight for their lives?" I asked myself. "I don't want this place to be a part of MY LIFE." They call the sweat test a 'gold standard test' which doctors use to diagnose if a patient has CF based on how much salt is in their sweat. The nurses put all sorts of patches on Adriaan's body and wrapped him up like a burrito in aluminum and then several blankets. I held him like this for quite a while. As I held my little boy, a genetic counselor came in to talk to me. She asked, "How are you doing? How have you taken the news? How long have you known?" That is when the tears started flowing. Up until that point I was just doing what I was told, going here and there, signing this and that. I have already grown so much since that day and I hope to continue to grow through this trial.
Cystic Fibrosis is a recessive genetic disease. Adriaan inherited a defective gene from Josh and I. CF affects the lungs and digestive system and other organs and tissues. Adriaan's body produces thick sticky mucus that clogs the lungs which leads to lung infections and it also obstructs the pancreas which prohibits digestive enzymes from breaking down and absorbing food. The current average life expectancy is in the mid-30s. Since CF is a genetic disease...each of our pregnancies will have a 25% chance of that child having CF. Which means that a few or all of our kids could have CF...or just Adriaan.
I had never experienced grief until I learned about Adriaan's diagnosis. I have never been so sad in my life. I cried in Josh's arms, I cried myself to sleep at night, and I cried whenever Adriaan coughed. I grieved for his health and I grieved for the life placed ahead of him. I have always been blessed with good health and I have never known what it's like to struggle with an illness.
As his mother, I have come to accept one fact. This is HIS JOURNEY. I CANNOT fix or change the fact that Adriaan has Cystic Fibrosis. I can't take away his trials and I can't endure his pains. I often find myself asking, "So what CAN I do? What do I have control over?" I CAN be there by his side. I CAN teach him to look past himself and serve others in greater need. I CAN love him and pray for him. I CAN and I DO have an understanding that he has a role in this life and that having CF will help him to fulfill that role.
Adriaan is doing really well right now. He seems healthy and his huge smiles are accompanied by the most adorable dimples. In addition to his regular pediatrician visits, we have been visiting a team of specialists at Primary Children's once a month. Most of his treatments are preventative. We give him two chest therapy sessions a day at home/grandma's (3-4 times a day when he's sick). The chest therapy helps to open up his airways and break down and drain the mucus. He also takes a CF multivitamin, Vitamin D and extra salt. Right now he is pancreatic sufficient which means that he does NOT need to take digestive enzymes with each meal/snack yet. I am not excited for the day when that test comes back positive. He will continue to visit Primary Children's every three months until he's 18. (Not sure how I'm going to like that time commitment if I have a few children with CF). Once he turns 18 he will visit a clinic at the University Hospital.
I have learned to SIMPLIFY my life in order to take care of Adriaan's extra needs. I am grateful for Adriaan. I am grateful that the Lord has entrusted me to look over this boy and help guide him along this earthly path. I hope that I can live up to be the mom that Adriaan deserves.
Cystic Fibrosis is a recessive genetic disease. Adriaan inherited a defective gene from Josh and I. CF affects the lungs and digestive system and other organs and tissues. Adriaan's body produces thick sticky mucus that clogs the lungs which leads to lung infections and it also obstructs the pancreas which prohibits digestive enzymes from breaking down and absorbing food. The current average life expectancy is in the mid-30s. Since CF is a genetic disease...each of our pregnancies will have a 25% chance of that child having CF. Which means that a few or all of our kids could have CF...or just Adriaan.
I had never experienced grief until I learned about Adriaan's diagnosis. I have never been so sad in my life. I cried in Josh's arms, I cried myself to sleep at night, and I cried whenever Adriaan coughed. I grieved for his health and I grieved for the life placed ahead of him. I have always been blessed with good health and I have never known what it's like to struggle with an illness.
As his mother, I have come to accept one fact. This is HIS JOURNEY. I CANNOT fix or change the fact that Adriaan has Cystic Fibrosis. I can't take away his trials and I can't endure his pains. I often find myself asking, "So what CAN I do? What do I have control over?" I CAN be there by his side. I CAN teach him to look past himself and serve others in greater need. I CAN love him and pray for him. I CAN and I DO have an understanding that he has a role in this life and that having CF will help him to fulfill that role.
Adriaan is doing really well right now. He seems healthy and his huge smiles are accompanied by the most adorable dimples. In addition to his regular pediatrician visits, we have been visiting a team of specialists at Primary Children's once a month. Most of his treatments are preventative. We give him two chest therapy sessions a day at home/grandma's (3-4 times a day when he's sick). The chest therapy helps to open up his airways and break down and drain the mucus. He also takes a CF multivitamin, Vitamin D and extra salt. Right now he is pancreatic sufficient which means that he does NOT need to take digestive enzymes with each meal/snack yet. I am not excited for the day when that test comes back positive. He will continue to visit Primary Children's every three months until he's 18. (Not sure how I'm going to like that time commitment if I have a few children with CF). Once he turns 18 he will visit a clinic at the University Hospital.
I have learned to SIMPLIFY my life in order to take care of Adriaan's extra needs. I am grateful for Adriaan. I am grateful that the Lord has entrusted me to look over this boy and help guide him along this earthly path. I hope that I can live up to be the mom that Adriaan deserves.
Sarah, thank you so much for sharing! I love you and your darling family. Thank you for your example. I look up to you! I can't wait for Beck and Adriaan to be friends:)
ReplyDeleteOh my goodness Sarah, I had no idea that you guys were going through that!!! You are an amazing mom, and you are an amazing person!!! I realize that this is a trial for you more than it is for your sweet baby right now, and it will still always be a trial for you. I'll keep you in my thoughts and prayers! You are amazing friend, I love you guys!!!
ReplyDeleteThis brought me to tears. What a amazing attitude you have toward this trial. There is no doubt that as you learn to adjust your life through this challenge that you will make the best decisions for your little boy and family. May the Lord be with you always!
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