Its Complicated

Tomorrow has come and gone. Im thankful I took the time to write beforehand because now we are here. Yes, we got the amazing news of no tumor. The urine came back with no elevated levels which means there is no tumor anywhere in her body. I do not think this is a light or little thing. I absolutely praise God for this. He is a good God who is allowing my child be spared surgeries, chemo and all kinds of other things that only a mommy that has a child with cancer knows about. But will you give me the grace to say something.... To be 100% honest without judging or thinking me ungrateful? Its complicated. It is. Without a tumor we know that we are dealing with an eye issue. We know we have the potential to be dealing with a significant vision impairment. And you know what? That's hard. That stinks. And its straight up scary. We still have a baby with the same symptoms. Yesterday I praised God for no tumor but I also mourned possibilities. I am a big believer of crying no tears over possibilities but to be honest its hard this time. It could take years for us to know if her vision will be significantly affected or not and that's tough. We are looking at a lifelong condition. We are looking at more special needs. Yes these are possibilities and not for certains. but I have to wrap my mind around that. The doctor mentioned ocular albinism and congenital nystagmus. He's not 100% on either one of these. And we go back in 6 weeks to have a better look. But both aren't fantastic. His encouragement to me was honestly a little scary. "These kids learn to read without braille, they use magnifiers and other things and some do drive." Ummmmmm Doctor your encouragement stinks! It has potential to be surgeries, therapies and glasses galore. I adore Wren, I love her and don't want any of that for her. There is a chance that her vision will be barely affected and we are definitely praying that way but as we pray we know that it might not be God's plan. We pray for healing, we pray for protection of her eyes but we also know from experience healing is not always Gods answer. So as I say, Praise God. I also say, It's Complicated. But know that in the complication I am praising. Confusing? Well yea in my head and heart its confusing. Resting in the knowledge of who God is and how much he loves Wren.

Comments

Post a Comment

Popular posts from this blog

Wanting you to see both sides of the coin

So the last couple posts have been pretty incredible. And I am thankful. But I also want to be honest and want you to have a glimpse of both sides of the coin. Tonight was a great night. We spent time with great friends and had some wonderful conversations. However, Tonight had its sadness also. Tonight, Toby realized something or at least he voiced it for the first time. There was a baby at our house that had just turned one. He was walking around like a champ. Super cute. Toby realized the difference. At first it was just a quick sentence. "The baby is standing." and then throughout the night it progressed. "The baby is walking." And then a little more. "The baby is walking without a walker." My heart is genuinely heavy tonight. Its hard to say all around sad, because it was a good night. But just heavy. After Toby thought these things through he said, "I am going to walk without my walker." And then he tried. Needless to say it didnt quite wor
Read more

a moment of triumph

Im having a rough day. One of those nothing goes quite according to plan cause ive been at appointments with Toby. Trying to homeschool, now juggle 6 therapy sessions a week and any other extra appointments are taking a toll on my emotional and mental stability.!! So instead of sharing all my woes with you and sitting and feeling very very sorry for myself. I'm going to share a happy moment. I hope that people from my church family will especially enjoy this. Since our Pastor has been doing the "kids choir" every Sunday morning Ive enjoyed and not enjoyed it. Of course I love seeing all the kids up there and I love watching Gracie so proudly march up there to sing and all of my friends kids. But there was always someone missing. And that someone sat right next to me, (well sometimes, sometimes he prefered the smyer family) : ) Toby would never go up. The first time he tried he started making it that way and I honestly saw the shock of stairs and kids running hit him. It
Read more

Toby Walking

Toby's therapist unlocked one of the drop locks on Toby's KAFOs last visit. Well, I wish I had a "before" video. But there is a HUGE difference. Keep praying for Toby. This video was done with my phone, but I think it's still incredible!!!
Read more