Our son's NF journey

Josiah has Neurofibromatosis (NF-1). (Here is a brief overview of what NF is) Last week we took him to Cincinnati Children's Hospital to see his specialist, Dr. Hopkins. Dr. Hopkins wanted to be proactive and ordered an MRI with orbits to look for optic gliomas. Which 1 in about 20 kids with NF-1 develops. Most of the time by the time the child is showing signs or symptoms of one their vision is already affected and the loss vision cannot be restored. So the thought is to get regular MRI's done to look for the first signs of one so if there is one there it can be monitored and treated before any vision loss has occurred.

Because we live a good 3 hours away from Cincinnati we had his MRI done on Thursday and spent the night at the Ronald McDonald house that night. We saw his specialist on Friday. Josiah had to be sedated to get his MRI done due to him only being 2 year old. He would not be able to lay still enough for the images to be taken. So the rest of the day he was pretty wobbly and could not get his bearings. Which frustrated him to no end!

Friends of ours who live in KY were actually at Cincinnati Children's on Friday with their oldest for an appt (different type) and we were able to meet up with them! It had been a good 4 years since we last got to see them. We were only able to catch up for about 20 minutes before we had to get to our appt. But it was really nice to see them again.

Dr, Hopkins did find something on the MRI. Smiles has an optic glioma on his right optic nerve. The thickening is not bad right now. So in 3 months we have to go back and get a repeat MRI to see if there has been any changes. We also have to get an eye examination done to check for vision loss, pupil responses, etc.  If there is any changes then Dr. Hopkins will refer us to an Oncologist so they can start Chemo. (they do not want to do surgery unless it is a last resort. If surgery is done then the surgeon would have to remove the optic nerve which would result in blindness in that eye)

If there are no changes then we will go back every 3 to 6 months for MRI's to continue to monitor the tumor.

I am thankful that it was caught so early. This is not the path I would have chosen for us but I need to put my trust in God. We are 3 hours from a hospital that has a research clinic for NF. Which is fabulous and such a blessing. Josiah has not shown any symptoms of the tumor right now which is promising.

 "Trust in him at all times, O people; pour out your heart before him; God is a refuge for us" Psalm 62:8

"Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid."John 14:27

Fervent- Your Past

I had planned on posting about the each section of Fervent as I read it, but life happened. I do want to post about the chapter on your past (chap. 5) because of how impactful it was on my life. I recently started meeting with someone I asked to be my mentor. I had shared with her some of my past sins and current ones that I was struggling with. "Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and produces wonderful results." (James 5:16)

She asked me if I had forgiven myself. I hadn't. I know that God forgives. I had asked Him to forgive me; I knew in my head that He did but my heart was having a hard time accepting it. That night I was really beating myself up about it. The next morning I looked up scriptures on forgiveness.
"But if we confess our sins to him, he is faithful and just to forgive us our sins and to cleanse us from all wickedness." I John 1:9


I also read the next chapter (chap. 5) in Fervent. It was about your past. How timely! The introduction really opened my eyes and hit me. Yes, Satan does this to me!
"If I were your enemy, I'd constantly remind you of your past mistakes and poor choices, I'd want to keep you burdened by shame and guilt, in hopes that you'll feel incapacitated by your many failings and see no point in even trying again. I'd work to convince you that you've had your chance and blown it- that your God may be able to forgive some people for some things, but not you..not for this." (pg. 93) 

Instead of feeling and celebrating God's grace and forgiveness I felt shame and undeserving. This chapter reminded me then and now, almost a month later, that instead of feeling guilt and shame and guilt I should be celebrating all the grace that God has given me! And that it should bring me closer to God not make me feel like I should be running in shame from Him like Adam and Eve did. 

I still struggle with sin (who doesn't?). I need to be remembering that God's grace is freely given and when I mess up I need to turn to God instead of the wanting to hid from Him. Satan loves to rewind scenes from my past (even as recent has yesterday) in my head taunting me with them, even though I have confessed them to God.  It is a hard thine accepting forgiveness. I forgive others easily. I just need to learn how to forgive myself!

Fervent- Getting Your Passion back

Years ago I attended a very small country church in Texas. At that church I learned a hymn

(the chorus)

I went to the enemy's camp and
I took back what he stole from me (x3)
I went to the enemy's camp and
I took back what he stole from me

Some friends and I have started a book study using the book, Fervent by Priscilla Shirer, This book was inspired by the movie "The War Room". She writes about what she thinks the devil's top ten strategies against you are.

Sadly I ended up having to miss the first book discussion because of an eye injury. But here are some things that spoke to me in the introduction and the first two chapters.

The enemy knows me. He knows my pressure points and my weaknesses. He know exactly where to hit to make me weak and to try to take control. So I lose my passion and steam. Not only in what I love and what brings me joy, but with my walk with the Lord. The enemy plots and schemes and sets his plans so I will fail. So I will lose hope, so I will become complacent. He has used so many strategies and they have worked in the past. But I do not want that anymore. 

"Put on all of God's armor so that you will be able to stand firm AGAINST ALL STRATEGIES of the devil." (Eph 6:11 emphasis my own)

Strategies, schemes and deceptions

Priscilla writes, "We pray because our own solutions don't work and because prayer deploys, activates, and fortifies us against the attacks of the enemy. We pray because we're serious about taking back the ground he has sought to take from us."
The enemy had stolen my joy. Made me complacent. Made me dis-value prayer. He dimmed my passion for God, His word, and prayer. This didn't happen overnight but the enemy saw little areas, where he wedged himself in and set up camp. And his campsite just kept growing.

While my belief in God and what Jesus has done for me was still there the passion and the zest was not.

Priscilla Shirer writes that if she was the enemy this would be one of the primary goals. Because if my passion is dimmed my resistance to temptation and discouragement would be lowed.

So true.

Satan also likes to accuse. He likes to condemn while God convicts.  I have heard it before. But I never realized this until I read it in this book

"Your need for God's grace is supposed to be a passion enhancer" (from her book)

I really need to embrace that. I mess up all the time. I am not perfect. But God does not condemn that is Satan. God convicts. I should use my mess ups as an opportunity to draw closer to God not be ashamed to come to him.

The second chapter talks about your focus.

"When you bring your concerns and fears and irritations to the Lord in prayer, you're aligning your weakling spirit with the full focus of God's Holy Spirit." (from her book)

That hit me. So many times I take my frustrations or fears out on my dear husband and children. I get overwhelmed, tired, or irritated instead of going to God to ask Him for His strength and help to change my focus and my attitude.

Asking for help is not a weakness!

"Pray at all times in the Spirit". (Eph 6:18)

I am going take back what the enemy has stolen from me!

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Battling the Unseen- taking back your prayer life

I had recently watched War Room with my husband. It is a fantastic movie! It really encouraged me that I need to be fighting more. More in my prayer life against things that are trying to come in between my husband and I, our marriage, our children. Our Joy. But how? I know praying is the obvious answer. I use to have a better prayer life and really fought the unseen battles. But I had lost that and the fire and passion. How do I get back on track? I recently ordered a new journaling Bible which does not get released until the beginning of Feb. I have hopes that it will help my attention span while praying and meditating on God's Word.

A friend had recently shared that she started reading a book called, "Fervent" by Priscilla Shirer. It is a book about prayer and battling the evil one in prayer. (this post does contain an aff. link)

I am very excited to dig into this book. I am missing out on so much because I know my walk is not where it should be. This book is specifically geared towards prayer and battling the unseen in many aspects. It focuses on things such your passions, life, family, past, fears, etc.

I had gotten in another rut. Many of my prayers were about healing and other practical things (keep us safe while we drive, bless our food, we could use a new van, etc.). And prayers of thanksgiving. But I need to be praying more against the devil's evil schemes. I need my prayers to go deeper. I need to start praying about my feelings and emotions. For my husband and the attacks of the enemy against him. For my children!

I have lots of fears that I need to be taking to God instead of distracting myself. I did take a step of faith today and started to schedule appts. for Smile's neurofibromatosis. That one scares me. But I need to remember that I can battle that fear and whatever the walk is with his disease by turning to God.

There is also a lot that the devil is trying to steal from me. One of them is my joy. Especially my joy of being a mother. I get tired, I get selfish. I lose my patience and the devil is using all of that to make me frustrated and unhappy. Not seeing the happy moments or cherishing them. The devil would love for me to just constantly be unhappy wishing that my kids behaved better and listen better. He wants me focused on how things need to change (how the house should be cleaned and organized, that my husband's health is not the greatest, etc.). The devil also wants me to focus on all the sacrifices that I make being a stay-at-home mom, and how ungrateful the job is, rather than on the joy of being home with my children. Sharing with them (my children) the joys of overcoming obstacles, learning a new skill, their childhood.

Another is peace. I allow what's going on in the world to make me a nervous wreck. When I should be remembering that there is nothing that can keep me away from God's love. 

I am taking back my prayer life! I am waging war!