Back in September, Gideon was invited to be part of a clinical trial. Most people jump at a chance like this, but for me it seemed to be just another unknown…and for me, the unknown usually causes me to fear.
The study involves the administration of the drug Betaine for 6 months. In a petri dish, Betaine was found to help the peroxisomes functions better and while that would be great news for Gideon, we were told that what happens in a petri dish does not always translate to the human body. Therefore the doctors were very clear that this is not a cure for peroxisomal biogenesis disorder; in fact they don’t really know what to expect. The drug has been used for a completely different disorder so they know the side effects are minimal; but until now, the drug has never been used on our PBD kids.
The drug did not arrive until a few weeks ago, and due to illness and travel, we just began administering it to Gideon on Monday. So far he has done great! Crazy to think this will last into June- he has to take the Betaine orally 3x/day! Holy cow, I can barely remember to take my vitamins once a day… Hopefully I won’t screw this up.
It’s funny how we can feel so frightened by the unknown. If you know me well, then you know I’m not a fan of medication unless its really necessary. Take the Betaine for example- I know it sounds ridiculous, but I was so worried about it in the beginning. I had never heard of this drug, and even though we agreed to be a part of the study (back in September), Kevin and I prayed about it until the drug actually got here. Then once it arrived, I had two nurses and my chiropractor look it over. Turns out Betaine is a nutritional supplement that can be bought at GNC (not in the dose we have of course).
All that worry and fear…for what?
I tell you that story because I’m always learning something new (and old) from our journey with Gideon. This is may come as a shock to you (insert sarcasm), but God wants me to be fearless. All the praying I did about our unknowns & seeking wise counsel for my uncertainties… those are all good. However, they all seem counter productive if I’m not willing to let go of my fear.
While we were in San Antonio this weekend, Kevin and I were having heart to heart moment about “when that time comes”… (If you’re new to my blog, that phrase always means when Gideon goes home to be with The Lord). We don’t discuss it often, but sometimes, through random circumstances, it just comes up. As long as I live, I’ll never forget this moment. With tears in our eyes, I asked Kevin the unanswerable question, “What are we going to do?” At that moment a poster board that had been in front of me for over an hour hit my direct line of sight, and one word caught my eye….
Fear-less.
I realize I’m about to state the obvious, but that poster board reminded me (yet again) that God doesn’t want us to live in fear. He wants us to live in FAITH. Faith that He’s still in control even when the circumstances of our lives seem like they are not. He wants us to know we can trust Him because He is the author and perfecter of our faith. He has the final say. He knows our fears and holds our tears long before they ever fall to the foot of the cross.
Philip Yancy once said, “Faith means believing in advance, what will only make sense in reverse.”
This means we can trust His heart even when we cannot see beyond our mountain. When its all said and done, the pieces will fit. If we believe God and His word, then fear falls out of the equation. The death and resurrection of Jesus leaves us with a faith like no other. Ultimately its that faith demolishes our fears.
So no matter what we face-
We don’t have to worry about all our unknowns.
We don’t have to have everything figured out in advance.
We’re not expected to know all the answers.
And we certainly weren’t created to live in fear…praise be to God for that!
I don’t know what mountain you face today. I haven’t traveled your road nor walked in your shoes. But I want to encourage you to open your eyes & ears as you go. I don’t know much, but I do know Jesus goes before us.
And faith in Him renders us fearless.
I was told once that the word “fear” was mentioned 365 times in the Bible., in various forms such as “fear not” “have no fear” etc….that’s one for every day of the year. “YEA though I walk through the shadow of the valley of death , I will FEAR NO EVIL psalms23:4 we all are afraid of the unknown..but it’s unknown to US, but not to HIM.. He lent you that child..He knew what understanding parents you would be and that you would share your child with all of us so he could bring us closer to the Lord and also we could comfort you when he wants him back…just think, Gideon will hear the angels sing, see our Lord’s face, sit on HIS lap and dance around HIS feet..how could we deny him that..he will be a healed little boy and his spirit will be with his earthly family every day and he’ll be trying to tell you how wonderful you are to have gifted him back to our JESUS..God Bless you and we are with you, praying for you and we are learning from Gideon’s teachings. Just remember, not only did you both create a life..YOU CREATED AN ANGEL!!!!
Thanks Donna! I’ve heard that as well about the “fear nots”.. Love it. 🙂 thanks for lifting us up and encouraging us along the way. Love you much!! God bless!
Thanks for the encouragement, I feel like I’m always in fear of whats to come. If there will be any horrible situation in the future, I feel like I must be prepared. But you reminded me that I need to step away from those thoughts and only focus on the situation at hand. It’s crazy how Satan loves to get into our mind and bring us down. We worry over what’s not even happened yet. And when it does happen God will bring us through.
Proverbs 12:25
“Anxiety in a man’s heart weighs him down, but a good word makes him glad.”
Jacey, thank you for the scripture and your wise words!! I appreciate your thoughts always!!! 🙂
WONDERFULLY PUT..GIVE MY LITTLE SWEETHEART XXXX AND OOOOO FOR US.LOVE YOU ALL!
I will!! Love you too!!
Thank you for what you wrote today. I needed it badly. Love you sweetheart. You are helping so many people.
Ellie!! Thank you!! I love you so much!!!
I love that Philip Yancy quote. I pray for you and your family.
Thank you Patricia!!
Thank you. I needed this today. God has led me down this path and I put my faith in Him to see me through. Fearless through faith. I must remember this. Continuing to pray for your family.
Thanks Jonelle! You’re prayers are appreciated. 🙂 God bless you and yours!
That was so beautiful, Samantha, and just what I needed to hear tonight. Always praying for your sweet family.
Thanks Kylie!! 🙂
I hope you don’t mind…I shared some of your post today on my FB page. Too good not to share!! What a work God is doing through your journey. Both in you and your family and through those of us that are watching from afar off. I and many others have said it before, but maybe today you need to hear again what a blessing you are to us. Your children are blessed to have you as their mom. Love & Prayers!
I don’t mind at all!! The more people that know my sons story, the better!! Thanks so much for your words of encouragement. Its always good to hear that others are being blessed. Thank you also for your prayers- They are much appreciated!! 🙂 God bless you and yours Leslie!
Once again you manage to put everything in perspective. Like so many, I tend to get overwhelmed this time of year. So much to do and so little time! Then I read your thoughts and realize I need to slow down and savor each moment. God knows our thoughts and our fears and I love Phillip Yancy’s definition of faith. I, being human, want to have an outline of my future – what is going to happen, why it will happen and in what order it will happen. Thanks for reminding me that God has it in control. My small leap of faith is all I need. Praying for Gideon as he continues this medication and for you and Kevin in your journey of faith as you minister to him. I hope you have considered putting all your writings from your blog into a book someday. It would be a blessing to so many people. Thanks again for sharing!
Thank you Vicki! Your words of encouragement mean so much!! The holidays can definitely be tough. You guys have been through so much and I hope you can slow down and enjoy every moment given. I love your family and am so grateful to know you guys. Your daughter has been a huge blessing in my life. 🙂 Thanks again for lifting us up. God bless!!
Thank you so much for your sharing. God has spoken thru you to me and so many others. I shared this post with my women’s group – which is focused on healing. We had just spent our last night together discussing fear. What you shared was so perfect. I continue to pray for you and your precious family! Merry Christmas Samantha!
Thank you so much Amy for sharing my son’s story with your women’s group! I love knowing that it makes a difference in peoples’ lives. This journey is so much more meaningful knowing his life has touched others. Thanks for your encouragement and taking the time to travel down this road with us. Merry Christmas!!