Another Brain Surgery for the punch card….this time it’s for me.

I’ve avoided journaling about this because I haven’t known what to say about it. I process my feelings about things through writing, more so than talking and so sometimes I just have to get it all out  to even know what I think about something. So many of you have been on this journey with our family for many years and you’ve had a front row seat to our lives because you’ve read along as I processed through what the Lord has walked us through. This next thing is no different.

For the last several months it’s been all about Henley, her third surgery and all that came along with that. But I’ve been holding on to another piece that has just been rattling around in my head that I wasn’t ready to even verbalize because I haven’t carved out the mental space to even begin to process through it.

I’ve used my blog to create a family history book for our children. I’ve taken this blog and put into a physical book for my children to go back to and remember trips we’ve taken, things The Lord has walked us through and memories we’ve made through the years. My desire is to write it all down, the good and the hard for my children along with my commentary about each moment so they can have a more complete picture of their life events. I also wanted Henley to be able to go back and have an explanation for every decision Adam and I made along the way of her medical journey and also give Haven & Zane background information to the things we were experiencing as they grew. Maybe this will help them to give us an extra dose of grace in our parenting.

Some of you know that I’ve had some health challenges right alongside Henley through the years. I’m certain there are parallels to the emotions involved in her things and how that has played its own role in how my body has processed the stress, trauma and pure exhaustion we have all experienced along the way. As moms tend to do, we put ourselves on the back burner until there is no way we can continue functioning without addressing our own issues. So here we are.

I’ve reached this place a couple times over the last decade. Most notably right after Henley’s second brain surgery in NYC when they discovered the “kidney mass” I had was actually a massive aneurysm that needed immediate intervention to save me from a potentially catastrophic rupture. The Lord has always gone before me and walked me right into the places I needed to be at just the right time and I’m thankful He is doing that once again.

About a year ago I felt strong in my spirit that I needed to have some brain imaging to check for potential issues in my arteries and veins. I met with a doctor who helped to get me approved for imaging on my brain just to “check things out”. There were several findings but the one that was most concerning at the time was an “infindibulum” in my brain behind my left ear. In normal people language… it’s like a pre-aneurysm. A out-pouching of an artery that needs to be observed but is not yet an aneurysm. Given my history of Ehlers Danlos Syndrome and High blood pressure, and the fact that I’ve had an aneurysm already in my kidney that required two surgeries, I was advised to have a consult with a vascular neurosurgeon. That happened the week before Henley’s surgery when we were in NY with a colleague of her surgeon. During that conversation he said that based on several factors, it was a good idea to do another set of imaging called an MRV to go with my MRA and MRI. He told me then that if they found anything that needed “intervention” (surgery) that he would refer me to a specialist in interventional neuro radiology.

A few days after Henley’s surgery in February I went in for the imaging on my own brain. Within 48 hours I got a call from the new surgeons office saying that they would be taking over from here. I knew then that they had found something else but didn’t know for sure what it was. It took several weeks of missed phone calls to get on the phone with the doctor but when we finally spoke he spent 45 min on the phone with me explaining what he found. It explained so many of my symptoms that I didn’t even realize might be related and he said he felt I might be a candidate for surgery based off  the criteria. I asked him how long I could go before needing to have the procedure and he said it was dependent on me and how I was feeling but felt if I wanted to tough it out, I could wait until summer to come back up to NY. At the time I was in no way interested in heading back for another brain surgery so we scheduled it for July. It’s too hot in a Texas anyways so not a bad time to leave town.

So here we are. Adam and I are flying up to New York today and surgery will take place tomorrow morning (Friday) SUPER early. If I could ask for your prayers it would be so appreciated. Pray for everything to be clear cut and simple. Pray that the doctor is able to actually perform the procedure to clear the path and open up more blood flow to my brain. There is a 30% chance once he gets in there he won’t be able to do anything. When I asked what my other options were, there weren’t any other than living with my symptoms. Which are: hearing my heartbeat pounding all day everyday in my left ear (where the pre-aneurysm is interestingly enough) blurry vision that comes and goes. Sometimes I see fine and other times it’s hard to make out words even with glasses. Intense headaches that last for days because of increased inter cranial pressure due to blood flow not freely being able to flow to and from my brain. Pray for stable and strong veins and arteries. (Fragile connective tissue is a known complication with Ehlers Danlos Syndrome) Pray for no complications. Last time my “2 hour surgery” turned into a 6 hour situation because of Ehlers Danlos complications) pray for my mental health as I will be awake for part of the procedure. Pray for Adam who will be handling all of it and me. Pray for our kids as they stay back here with grandparents.

Thank you all so much for your loving support. Hoping this is a huge answer to mine and Adam’s prayers for healing.