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I’m just gonna start by saying I hate, hate, hate writing these types of posts. I don’t mind writing them when asking for prayers for others. I’ll raise my hand in class and ask for some prayers for people who are hurting with no hesitation. But prayers for myself or my little family? Super. Awkward. But this situation has reached the point where the more prayers the better so I gotta put my pride aside and share what’s been going on.
Back in late September Zach was traveling a good bit for work. He was working in a prison on Sept 20th (he sells insurance to the guards and staff) and while in the prison he can’t have his phone or anything like that. So he left to come out and call me. He said I needed to call and make him an appointment at the eye dr asap. He had been having some eye issues for a bit but that day they got a lot worse and were scaring him. He described it to me as a constant light pressure behind his eyes and then random times where his vision would look like he was opening his eyes under water, but worse. Not double vision, just really super blurry vision and difficult to focus.
Zach is a pretty “tough guy” and he sounded scared on the phone which just isn’t the norm for him. I called the eye dr to get him an appointment for the day he’d get back (this was a Tuesday so I was trying to get him in to be seen on that Thursday). He’s never even had a legit eye exam in his life because his vision is that good (my blind self is mega jealous!). I was SHOCKED when I called and told them what was happening and they said he needed to go to the emergency room IMMEDIATELY.
Zach was in the prison so I couldn’t contact him about what they had told me. I just had to text him the info and wait until he had another break to check his phone and see it. I looked up with our insurance and called around where he was located to find him a place to be seen that day that was covered in our plan. He went straight from the prison (where he’d been working since 5 am) to the emergency room where he sat and sat and sat.
Of course I had a party planned at my house that night. Several friends came over for a scarf exchange. I asked Zach to let me drive up there to be with him but it is one of the most far away prisons that he works and it just didn’t make sense for me to come and I didn’t want to cancel on everyone so last minute. And really having people to distract me was a good thing!
The ER dr also took it all very seriously and did a CT scan as well as some other tests. It all looked clear. He told Zach to get home as quickly as possible and be seen by his eye dr. I begged Zach to go ahead and cancel the prison for the next day and just GET HOME. I didn’t like the idea of him driving that long of a distance but if he wasn’t going to allow me to come get him then he could at least REST, SLEEP and then drive home DURING THE DAY!
Poor guy was in a suit for a solid 16 HOURS.
The eye dr was awesome about working him in so he got home and we immediately went into their office. It was all so scary because everyone kept treating it SO urgently. The eye dr did a bazillion tests and used several big machines to look into his eyes. His vision is still perfect and they didn’t see anything of concern so we knew it wasn’t an eye issue that was causing the problems. They still felt it was very urgent and wanted everything sent to a neurologist for him to look over and for us to see him asap.
First ever eye dr exam 🙂
This is when things slowed down. Super. Annoying. It’s one of the frustrations about living in a smaller town because there just isn’t enough medical staff to go around! It took awhile (it was actually not until Sept 29th…9 days after the ER visit) to get in to be seen with the neurologist. We both really liked him when we met him and were impressed with his knowledge on everything.
Rocking that suit to the neurologist 😉
He ordered an MRI and a lot of lab work. Basically since the CT was clear and the eye stuff was all clear he needed to do more testing to be able to figure out what’s happening. With Zach’s STRONG family history of auto immune disease obviously that’s the first thing we want to rule out. He said with Zach’s age that the first light bulb that goes on is MS but that there were also a ton of other things that could be causing it.
Zach continued to have the vision issues. We had one scary incident (I came home with the kids and Zach had been doing yard work. I found him in the back yard laying face down as if asleep. Thankfully the kids didn’t see him and when I raced out to him yelling his name he snapped out of it and seemed fine. No clue what caused that to happen or how long he’d been laying there since I wasn’t home) but otherwise nothing else got worse or changed.
They never called with the lab reports so we assumed it meant they were fine. They did call to schedule an appointment to review the MRI. Which we anticipated because the dr said he’d want to see us back to discuss the findings. They couldn’t get us in for several weeks which really upset me! We were leaving for New Orleans and I didn’t want to go on the trip with these concerns weighing on me!
The people who do scheduling at their office told Zach that with an appointment that far out it typically means it’s nothing serious to be concerned about. For us to enjoy our trip and not be worried! At that point we both honestly thought it was just all stress related. This time of year is stressful for Zach with work. Over the past several months he’s had some dry spots on his face and it’d make sense that those spots could be stress and the vision stuff could be too. Our bodies do SUCH strange things when under stress that we really have no control over and even if he didn’t FEEL stressed it didn’t mean that his body wasn’t experiencing it!
We really rolled with that. We stopped talking about it all because talking about it only caused Zach to feel stress and if it was all just stress anyway then I didn’t want to cause him more of it! We are not really dramatic people so we just rolled with it and did our best to put it out of our minds and just go forward. We had a BLAST in New Orleans and now, looking back, I’m thankful our follow up appointment wasn’t prior to the trip. God’s timing is always for a reason!
We did such a great job at being so chill about it that honestly I quit even praying about it. Zach had some big work stuff going on and even canceled the appointment to get the results because he felt like work was more important. It took us another several weeks to get ahold of them for a rescheduled appointment.
Alllll of this began on Sept 20th. We just went yesterday, Nov 2nd, to finally get the results. Again, we felt GREAT about it. Zero percent worried. Mrs. Charlotte came to sit with the kids so we could go together and we planned to go from there to the vet (more crazy stuff there but long story short our cat has feline diabetes) and then she was gonna hang out with us the rest of the evening to see Kye at his golf clinic and Britt at gymnastics.
We got into the dr office and a nurse took us back to the room. As we got situated the nurse said “I can tell you are a bundle of nerves about these results.” Y’all. I literally was ZERO PERCENT worried until she said that! I told Zach that obviously something was up because of how she acted.
The dr came in and, yup, it wasn’t what we were expecting. I know it may seem dumb that we are in SUCH SHOCK but we are. We just truly convinced ourselves that he’s just stressed out.
The dr told us the MRI shows (which we also went and looked at with him and saw for ourselves) white spots sporadically throughout the white matter portion of Zach’s brain. What? Yeah. RANDOM right?! As we walked down the hall to go see the MRI I turned to Zach and was almost laughing and said “omg what the heck?!?!” It’s just all so unexpected.
I’m usually pretty well planned for dr appointments but I was just really thrown for a loop. You watch movies and the moments when people get bad medical news and you always kinda wonder what that moment is like. Our moment was straight up confusion and disbelief. We were still casual. I was still smiling I think throughout most of the appointment. It was just such a weird feeling.
When we looked at the MRI we could see the spots. It was confusing because MRI’s show SO many layers so some pics we were seeing the same spots and some we were seeing different ones. There is one behind one of his eyes and the largest one is near the center of his brain where the two halfs join. None are in the gray matter area which is good. And they aren’t all clustered together which is also good because it’s not brain cancer or a tumor or something.
The dr is SUPER knowledgable. He is VERY nice but just uses a TON of big words and was listing off all these random things it could be and I just couldn’t digest any of it. Zach was a little more on the ball than I was (but not by much haha) and said “soooo this isn’t just stress?”
No dude, it’s not. The dr said it’s def something more than stress. Zach asked for a best case and worst case situation and I’m SO THANKFUL he thought to ask that! Our best case is that he’s having mini strokes. Yeah. That’s our best case guys. Worst case is MS. And he said there are about a million options in the middle of the two.
The plan of action is to get a ton more labs done. These are looking for more random stuff (whereas the first set looked at more obvious things). He said it’s ruling out “big name things.” Really the main focus is auto immune stuff just because the family history (although a MAN having auto immune stuff is rare. Usually it’s women!). I did a little googling and MS is sometimes considered an auto immune disease but it’s highly debated among drs. Our dr kept saying he’s not going to write down MS on anything unless we do find out that it’s what is going on. I guess insurances freak out about MS?
Along with the labs (which he already had this morning and we should know results of Monday) he needs to have another MRI but this time with contrast to give a more clear picture of everything. He also needs some test done where they go through your throat to see your heart? Cardiovascular issues and blood disorders are both some of the “in the middle” options. He also may even need to have a spinal tap done.
We did ask about football related. Could concussions cause the spots? He said there hasn’t been any scientific evidence to really link concussions to anything so it’s unlikely. Plus he DOES have symptoms. It’s not like we just randomly decided to get an MRI and saw the spots and he has no symptoms. Something is causing the vision stuff to happen, we just don’t know what it is yet.
I held it together like a CHAMP in the appointment. We got to the waiting room (as they were going to do the labs right away at first) and I realized if I sat down in that waiting room I was going to lose it. So I went out in the parking lot and called the vet to cancel that appointment and just kinda breathed for a few minutes.
I’m a planner. For me THIS is the WORST PHASE. I don’t like living in limbo. In the unknown. We know SOMETHING is wrong but we don’t know WHAT so we can’t have any sort of plan. I will feel better when we KNOW. Even if it is the “worse case” at least we will have that knowledge and be able to make a plan of action. Sitting and waiting is just super sucky.
I know everyone copes differently. For me I tend to: pull away from others, get REALLY annoyed easily with people, find the silver lining of the situation very quickly, and not freak out overall. I haven’t really had any sort of break down yet. I know it’ll come but it may take awhile to happen. Zach is similar to me in that he also doesn’t freak out. We’re both super calm. He is more affected by other people and has a lot of guilt seeing others upset because he feels like it’s “his fault” that they are upset. He doesn’t want to talk about it. I don’t think he’s told really anyone himself what is going on.
When we had the concerns about Kye back with his growth delay stuff auto immune concerns were brought up then as well. I realized then that I had two options: I could worry about it or I could not worry about it. In worrying you are ONLY WASTING TIME. Either you worry and nothing is wrong so you wasted time worrying OR you worry and something IS wrong so you wasted the times before knowing something was wrong by worrying rather than enjoying them! In this case we know something IS wrong but sitting here and worrying about what it could be when there are a billion options is just so silly. I’m not going to google a ton of different disorders or diseases. Why learn all about stuff that we hopefully won’t need to know? Once we know what his specific situation is then you bet I will become Ms Knowledgable on it.
I like what the dr said about it. That right now we are very spread out and hitting every area to rule things out. That we should get specific or have a narrow focus until we KNOW MORE. Once we do then he’ll help guide us to the right specialists/best care for that specific need.
I’m hopeful we’ll get results quickly so we can breeze through this frustrating “unknown” stage. I’ve always said if any of us need any medical attention that I’d prefer not to get it in Valdosta. My personal opinion is that we should go ahead and make an appointment to go to Mayo (in Gainesville) and get their eyes on everything. Zach wants to go ahead and let things ride here locally first and then make that call. Thankfully our insurance doesn’t start a “new year” until March 1st so we do have some time!
It was TOUGH getting home and having to tell his mom right when we walked in the door. We had driven separately to the appointment so we didn’t even get to have a plan of action to tell her. She takes this kind of stuff REALLY hard which is hard for Zach and I because it’s just so opposite of how we deal. I feel bad b/c usually when this stuff happens I’m able to be there for her but right now I can’t comfort her because we’re the ones the bad thing is happening to ya know? It’s just a weird place that we’re not used to being in.
My hardest thing is just accepting that something IS wrong with Zach. I look at him as this strong invincible rock. How can something be wrong? People have already been super quick to jump in and tell me how “so and so” has MS or some other something that it could be and that they are fine or living normal lives etc. I’m just not ready to hear that kind of stuff yet. If we cross that bridge then YES I’m sure those type of stories will be comforting. But I’m not even on the bridge yet. I’m still standing at the edge unable to make that step of acceptance that this is for real happening. So people need to slow their roll with me for now.
I also legit feel like I’m on steroids. I feel super hyped up and SUPER easily annoyed. Zach was cracking up at my random tangents haha it’s like this uncontrollable irritation to everything. I know I’m doing it but I can’t really stop myself either. I’m sure it’s some sort of defense mechanism of coping. My biggest personal concern is distancing myself from Zach. If I get annoyed by everyone else, cool, but I don’t want to shut off from him. I tend to withdraw/push others away and I know that’s the WORST thing I could do right now. It’s important that Zach is continually reminded that I love him unconditionally and am here supporting him each step of the way through this!
One of the first concerns Zach and I both had right away were about Tab. I have the shirts and was planning on having Mrs. Charlotte take some pics of us in them yesterday to go ahead and get the fundraising campaign going. I know that if you have any major changes in medical stuff that you have to report it to your social worker and it may make you ineligible to adopt. Obviously if we are dealing with MS or something more serious not only may we no longer be eligible, but it also may just not be something we should take on. Three kids is a lot. Medical needs is a lot. Adding a baby who may also have additional needs on top of what a newborn has (just having to stay in the birth state for that 10 day period after birth is a lot!) may just not be what is best for our family during this phase of life.
I really am okay with that. I know this may sound crazy but in times of trial I find SO MUCH COMFORT in searching for the silver lining. Some people are comforted by thinking of situations worse than their own (like in this situation I could be focusing on “at least it’s not cancer”). Some are comforted by learning all they can about the “worse case scenario” and expect that but hope for a better case situation (so here we could assume it’s MS and then and learn all we can about it etc). Some are comforted by hearing other personal stories and experiences. I’m comforted by seeking God in the situation. I know 100% that GOD IS ALWAYS GOOD. He doesn’t cause us pain. He doesn’t put “bad things” on us. But in those tough times He is THERE and He is BLESSING us. Sometimes it’s just harder to find those blessings than other times.
For me, right now, I feel like maybe God lead us to adopt not because we are meant to actually end up adopting. Maybe he lead us here simply so I wouldn’t be pregnant right now. Because as hard as all of this is to digest, I can’t fathom having to do it all while pregnant. If this is a life altering diagnosis, we can be okay with our family of 5. I can be able to pour myself into caring for Zach in whatever way he needs without having to be caring for a newborn at the same time.
Zach’s hardest thing in all of this is about Tab. He is so worried that this medical stuff will stop our ability to adopt. Which I feel SO BAD that he feels so bad but at the same time it just fills my heart with even more love for my husband that it is something he feels so passionately about.
My initial plan was to NOT do the shirts. To just put them on the back burner for now. Focus on Zach. Focus on having FUN and filling these days of waiting with as much joy as possible. I emailed Casey Z and filled her in and asked her input. She wrote me back and said that she’s praying for us and that it is so scary and that the outcome could affect our home study status but it doesn’t mean that it WILL. She recommended to continue on this path. Do the shirt campaign. I talked to Robyn about it and she said that this whole adoption journey is about stepping out in faith for us. We have to continue to walk in that faith!!!
I told Zach about the email from Casey Z and he said was SO PUMPED and said it’s literally a weight off his shoulders. I’d be okay with holding off on it but I know it’ll be a great distraction for us all to focus on Tab 🙂 So we’re planning to get pics taken asap of us in the shirts so we can get this thing rolling 🙂 We will just continue on our path for adoption and see where things take us in the weeks to come.
We also decided that we are going to decorate for Christmas this weekend. I felt stupid even mentioning the idea to Zach because, hello Nov 3rd. But he jumped all over it and said he’s all about it! We LOVE having garland up around our banister and every year get sad when we have to take it down. Our little family could use as much joy as possible so why not put it up now and enjoy it?
While this is all so super scary and hard to digest, I know that we will be OKAY. No matter what the outcome. Best case, worst case, or one of the million middle cases. We will be OKAY. We have our Lord and we have each other. We will continue to focus on God’s blessings in all areas of our lives and will continue to walk the path of faith no matter what distractions and obstacles Satan tries to put in our path!
This is a time for prayer. We’ve all heard stories of someone who gets some bad medical news then has follow up tests and everything ends up being clear. Like my dad said…”maybe it was just water spots on the MRI” YES I know that’s def unlikely 😉 But those types of things DO happen and CAN happen. I read once about how we will rejoice when God does BIG THINGS in other people’s lives but then struggle to believe He could do big things in our own. I know God is big. So maybe we will be one of those stories. Maybe those labs will all be clear and the follow up MRI will be clear too. I’m not expecting that but I’m not saying it can’t happen either.
Pray for our family. For QUICK, accurate results. For guidance on options for the best care. For a treatable path for whatever the outcomes may be. For the least life altering diagnosis possible. For our marriage to stay strong and for me to be there for Zach the best way I can. For our children to not see our worries and to just live in the bubble of joy that all children should have around them. And, hey, it never hurts to pray for that miracle either 🙂
Thank you, as always, for just simply being there for me. Writing is so therapeutic. Writing this makes it more real for me. It’s like nothing is true in my life until I write it down. Thank you for your prayers and support. I will be updating, hopefully SOON, with whatever results we will face.
I love this man and I love the life we’ve built together 🙂