It doesn’t go away.
It ebbs and flows, but it doesn’t go away.
It’s been 2 years, 8 1/2 months, so scan day is nothing new, and I keep feeling like this should be getting easier. In some ways it does, but then it doesn’t, and it hits me like a sucker punch to the gut. Those are the moments when it’s hard to breathe…
I was standing in the kitchen, looking out the window, watching the younger kids play on the jungle gym, and suddenly it hit. Tomorrow is scan day. My chest felt as tight as my throat, tears welled up in my eyes until there was one too many and they began to spill down my cheeks, and there I was, sniffling and sobbing, a living and breathing bundle of anxiety. I know I should be trusting the Lord, and ultimately I do, but I’d be lying if I told you I didn’t have those moments where the worries and the fears just storm in and it all seems so much bigger than I can handle.
That’s where I was yesterday evening.
The what if’s whirled around and around. I’d push one away, and another one would come crashing in.
What if there’s a “new area of concern” in the brain?
Or along the spine?
What if there’s a problem with his ventricles?
Would that mean there’s a problem with his shunt?
Just when I’d think all was quiet and calm in my heart, the worst-case-scenarios would start playing out in my head. The memories of every time we heard “this is extremely rare” and “we don’t really know why this is happening” come back and play out like movies that I can’t control. There is no off button. I can’t even turn down the volume.
My mom-heart worries. He’s my son, and I just want to make this all go away for him. For almost 3 years, I’ve just wanted to make it all go away, to fix it and make it better, but I can’t.
There’s nothing I can do but wait, and keep loving my son with all of my heart.
So, that’s what I’ll do.
It’s scan day today.
We should know more later.
We appreciate your prayers!
***UPDATE***
Scans are stable, no new enhancements!! Boring, just the way we like them!!
Now we breathe a sigh of relief, and he doesn’t have to go back for 6 months, which will officially be the longest Ian has gone without an MRI in the last 3 years!
I know you know all of this. I want to remind you again and again.
We love you all so, so very much. We are here for you all. We are always praying for you, thanking God for you. You have all of our love, devotion, hugs, encouragement, thoughts…and anything else you need that we can give you, especially the Jesus is us.
“You will keep him in perfect peace, Whose mind is stayed on You, Because he trusts in You.” ~Isaiah 26:3
Weeping, wondering and waiting with you, dearest.
XOXO
I understand what you are saying. My daughter is going through the same thing with her son. It has been 5 years and it doesn’t get any easier. You can’t control it. Even if you can control it outwardly, you can’t control your subconscious. Even if you go to sleep with good or other thoughts, they creep in.
Just know that there are people out here that understand and are praying for you and your son. It is very hard to just turn it over to God but know you can.
When I think about the passages describing Jesus right before he was arrested and crucified, I know it is not wrong to feel that way. It is not wrong to be terrified of what God may ask you to do or plead with him for one result over another. The faith part is not lack of anxiety, it’s taking that step anyway. So happy and relieved by the good results.
I had to hop over and read..though my comment will not be nearly as Masterwork as the spam you got earlier, but I wanted to let you know, I am here reading and praying. I pray for you very often. One of my daughter’s best friends at co-op is a little girl who just turned 9. She had the same cancer Ian had with similar complications. She is a beautiful little girl. It is a joy to know she and her mother and they are a wonderful reminder to pray for all of you.
Hi Ali,
I’m so sorry about all you (and your family) have been through these past three years. I hope/pray Ian continues to improve.
I just wanted to introduce myself to you… My name is Maddy and I am a also a brain tumor survivor from Arizona. After my resection, I fell into a two week coma, and afterwards I had to relearn to eat, walk, swallow, etc. My tumor was also posterior fossa and I ended up with some of the same deficits as Ian. I have double vision and ptosis due to a possible partial 3rd nerve cranial palsy. I have tinnitus and balance problems as well.
I was just wondering if Ian and I might like to start a dialogue.
Hope you all are having a good day.
Maddy