Havyn had big sis Amelia there yesterday for some sisterly support. We want to expose Henry and Amelia, one at a time, to what Havyn has to go through on Tuesdays. Our hope is that they understand why she is getting more attention, why it is important to continue to pray for healing, and also why mom is constantly saying “Wash your hands” — “But I did, mommy!” — “Well wash them again.”
Yesterday was hard. While in the waiting room one little guy named Ethan captured our hearts. He clearly has some vision impairments and lack of personal space — but he is so sweet! He just wanted to touch our hair and hold my hand. He asked Steve if he was a photographer because he was taking a pic of Havyn, and then he wanted to use Steve’s phone to take a pic of his dad. He kept asking if I would sit next to him – of course I followed him around and sat right next to him.
Ethan’s dad was wearing fatigues and Steve struck up a conversation. “What brings Ethan in?” Dad, Ben, responded, “Well he has a genetic disorder called NF1.” What the what!? He has a large glioma that’s pressed into his brain. Through surgery he lost some vision and cognitive function. He also has a large tumor in his tummy. Chemo has kept things in check and he is in maintenance right now so Ethan was doing well!
We found out that Ben trains chaplains for the Army. He graduated from Liberty University. Go Flames! I am a Liberty Grad! Crazy connection and still processing that. As we said goodbye to them our hearts were broken to see such a sweet boy trapped inside this broken body. Aren’t we all that, though? (Maybe not all boys ). We are all broken and so thankful that God made a way for us to be made whole.
Another family we met was Charmane and Christian. She spoke truth to me today. “This is temporary. In Heaven we are made new!” That means no more broken bodies! No more screaming and crying! No more poison being injected into little veins. No more tape! We hate the tape they use to secure the accessed port. No more bald heads! No more blindness! No more crooked backs. We will be WHOLE! Praise the Lord for Jesus! Praise the Lord for Heaven! As I watched my sweet little girl scream and kick (it took 3 of us to hold her down) as they poked her port, anger raged inside me. I ran to the bathroom and had a moment!!! It wasn’t pretty! God, why? He gently reminded me that he once watched his child suffer too. This is temporary! Praise God that Jesus is alive and he defeated all of this!!!! YES!
“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” – John 16:33
Ok I am done preaching! 🙂
We won’t know if the chemo is doing its job until we have another MRI early August. Havyn has tolerated the drug with minimal side effects. She has less of an appetite and seems a bit more tired and irritable, but that is to be expected.
Finally, we have an appointment with a slew of doctors in St. Louis. We’ll be heading there August 24/25 which isn’t early enough for us — we’d like to be there tomorrow — but at least we are on their calendar.
We are so grateful for your prayers and for reading our ridiculously long blog posts through this journey. We CAN’T walk this without the help of God and His faithful church!! We are simply humbled by the prayers, texts, meals, gifts, visits, and love everyone is pouring out on us. (Forgive me for not getting thank you cards out… know we are very thankful!!) We are so grateful for what God is doing and is going to do through Havyn’s journey.