Fear

"When my heart fears the very worst, I will run to Your word and be safe." - Karen Ehman


Today was an exciting day as we celebrated Braeden's 6th birthday a day early. In getting ready for an afternoon and evening out, I went to Facebook. While Facebook can be a wonderful place to catch up with the goings on, it can also be a scary place where realities hit home. While perusing the site, entries filled my page about Cystic Fibrosis, being that it is its awareness month. So many fundraising opportunities and ways to bring notice to this dreadful disease began flooding in. While those are important, it wasn't where my attention landed. What caught my eye was a post related to a photographer with Cystic Fibrosis who takes pictures of women with the disease. The photos were wonderful in the sense that these women were unashamed to model, yet at the same time, it was devastating. I saw GT tubes, oxygen tanks, scars, and bodies that looked so broken. When I got to the end of the pictures, I saw another post by a girl in her late 20s that was awaiting her second double lung transplant. Her first was rejected. As I watched her 10 minute video, I was in tears. Worries about his future and what would happen flooded my mind. I found myself begging God to let me switch places with Braeden. To completely heal him and let my body take on this wretched disease. Could I handle it better? Absolutely not, but at the very least, I wouldn't have to watch my son struggle through it. As I sit here now, and complete his breathing treatments, I am reminded that there is always a plan. "For my ways are higher than your ways and my thoughts bigger than your thoughts, declares the Lord.." God's thoughts are so much more vast than my own. I cannot begin to comprehend the view that He has. But I wonder, "Why?". Why does it have to be Braeden? I feel like prayer is a large part of the answer. Braeden's disease gets people praying, or talking to Jesus as we call it here at home. People who may not be the praying kind lift up their hearts for kids that are sick. They seem to turn to God and ask Him to intercede. My prayer for both of my kids has always been that they would do big things for Jesus, whatever that may be. Maybe this is it. Maybe we struggle so that others can see life. So that others can see a plan. So that others can see Jesus. If that's the reason, then we will keep on keeping on because as Braeden so eloquently reminds me, "when we see Jesus, we will have new bodies with no more breathing stuff."

What does your heart look like? Is it full of fear, or are you able to turn to Jesus so that He can relinquish that fear? It's only a conversation, but it feels so good when you are able to let it go. I understand that He may never choose to take this away. My prayer is that it allows others to see that even though this awful disease is ever present, so is Jesus. And with Him by our side walking us through, we can do anything. It's just that sometimes I need a reminder that, "When my heart fears the very worst, I will run to Your word and be safe." Is your heart safe?

A Different Perspective

This Easter weekend was a difficult few days. Jason's grandma is in the hospital clinging to life, and I received a call on Friday from Braeden's pulmonologist that I have been dreading. For people with Cystic Fibrosis, normal bugs that don't mess with us "normal" people really do a number on them. We deal with common things all the time - the flu, the common cold, Staph infections...We treat them and move on; however, they always seem to leave something behind - scarring. That's the Fibrosis part of CF. This time, though, his doctor said that he was growing Pseudomonas, a bacteria that builds colonies in the lungs and cannot be demolished. They will always be there, especially the kind Braeden is growing. I was hoping beyond hope that we wouldn't get this infection until he became a teenager. He's four...There are so many places that you can get it, but we think that we got it from our last hospital stay - a parting gift, if you will. While I spent most of Friday afternoon crying and worrying, Sunday came with a new perspective.

All those years ago, our Father spent Friday hiding his face while Jesus was suffering. He couldn't bare to see His Son taking on all the sin and pain that we all put on Him. That was Friday for me...Crying, saddened, broken. My brokenness was NOTHING compared to what Jesus was going through, but I remembered that God relates as He watched His Son suffer as well. Then came Sunday when Jesus rose again, conquering death, brokenness, sadness, sin. Sunday for me was realizing that my job is to lay Braeden at the foot of the cross, to bring him to the alter like Hannah did for Samuel. Hannah wanted a baby so badly - she was hurt, broken, tormented by not being able to bear a child. When she prayed, she asked God for a child, and when He provided one, she would give him back to the Father. That's what I have to do with Braeden - to give him to God at the altar knowing that there is nothing I can do that God hasn't willed. That said, this is not an easy process. It hurts; it's painful, but what other choice is there? Maybe the point of this is similar to what Jesus spoke about in John Chapter 9 when he healed the blind man. His disciples asked who sinned that this man should be blind from birth. Jesus replied that no one sinned; he was blind so that the Father could be glorified through him. And when Jesus healed him, the man ran back into town and told everyone what Jesus had done. The Father was glorified...

This is one of the hardest things about being a mom, especially to a sick child. You want to give your very life  for your child but know that you can't. That must have been what God felt like on Friday. He knew that His will had to be completed in order to reconcile us back, but it was so painful that He couldn't watch. Then came Sunday...I can't wait for Braeden's Sunday - when this pain goes away. We are getting close. That cure is right around the corner. Our job will be just to keep him as healthy as we can until we qualify for that cure. Keep praying - Braeden's Sunday is closer that we can hope!

The Reality of a Chronic Disease

As I spent sometime today thinking about what I wanted to write, a topic seemed to just have appeared. Before bath time tonight Braeden's exhaustion got the best of him. Unfortunately, this exhaustion led to a statement that I was unprepared to answer. His statement was related to his daily use of his enzyme, Creon. Creon is used each time Braeden eats anything with fats and protein. Our bodies make and release enzymes via our pancreas. These enzymes are routed to the small intestine where they are used to break down food. While Braeden's pancreas makes the enzymes, they are not released as he has mucus that blocks the pancreas rendering them unable to pass. Braeden's statement was that when he gets older like Daddy he won't have to take Creon anymore because his body won't need it. My response was anything but elegant as I was caught completely off guard. I had to explain to him that he would always have to take his enzymes because that was the way his body works. His rebuttal along with elephant tears included the following: but you and my friends don't take them...what's wrong with me? As I sat there fumbling for words, his next statement was, "that's just wrong." It is. It is just wrong. What do I say to him? How do I comfort this child with a chronic illness to which I have very little control? As I write the sentence above, I'm reminded by that still small voice of Jeremiah 29:11. "For I know the plans I have for you, declares The Lord. Plans to prosper you and not to harm you, to give you a hope and a future." While I don't like this disease, I'm reminded of all the things Braeden has taught me through it...patience, faith, hope, grace. While he is only four, it is amazing what profound words he utters. Our ultimate purpose on Earth is to glorify the Father, and although I wish this disease was nonexistent, I can say that it has changed me and is changing Braeden everyday. So we can be thankful because, we are closer to the Father through it, and what better place is there?