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The past couple of weeks have been tough. The time of “waiting” isn’t easy and on top of that it just seems like we can’t catch a break. Both Zach and I have been battling “the crud,” someone broke into Zach’s car in our driveway AND we had a pipe bust in our backyard. Whew. It’s been a LOT.
To cope I pretty much single handedly ate my entire ice cream birthday cake 😏 We also decided to put up on Christmas decorations. On Nov 5th. So we’re those people now who go straight from Halloween to Christmas and I’m totally not apologizing for it 😉 We discussed it and decided that we both LOVE our house decorated for Christmas and we should soak up all the joy we can right now 🎅
I have been BLOWN AWAY by all the prayers on our behalf. So many sweet cards have come to us, so many friends have reached out, and it’s been truly amazing to see how far prayers travel! The first couple days were a blur for me and I felt really angry. At everyone. At the world. At the situation. I truly FELT the prayers wash peace over me and it allowed me to cope much, much better so for that I’m so grateful! It took me a few days to finally cry and get upset (just listen to “In The Eye of the Storm” whew!) and even then it was a brief 30 min thing and then I was good!
Zach was NOT NERVOUS. He wanted to just keep going on with life and doing our normal routine and not worry about it. He kept saying whatever is going on has been going on the only difference is now we will know about it. I was down with this approach and really did well pushing all my concerns aside for most of the waiting period. I didn’t google anything at all (aside from the quick glance at the worst case/best case scenarios when we first got home from the dr) and I tried to just keep on keeping on.
We have some lawsuit stuff we’re dealing with (again, AWESOME TIMING.) this week and towards the end of last week we had to begin discussions and planning etc. While the discussions were all about Zach’s 2014 wreck (which I still haven’t blogged about b/c lawsuit) so many of the things that were discussed could apply to what is going on with his health too. It brought up a LOT of emotions for me. It made things feel so much more real and brought up a lot of fears and concerns about what could be going on and what changes my face our family.
I tried my best to keep it all in because I know seeing ME upset bothers Zach. He doesn’t like for people to worry about him or treat him differently and seeing people he loves upset “because of him” makes him feel guilty. I finally reached that point where I just couldn’t stop crying. Saturday morning Zach came in and saw me with the tears overflowing and we had a really, really good talk.
It’s tough b/c it’s happening TO HIM so really how he wants to cope with things is what matters most. But I’m his wife. Whatever is happening to him is also very much happening to me. So I’m stuck in this tough spot of wanting to deal with things how he best wants to deal but also needing to deal with it in a way that’s best for me too. It was very healing to let those emotions out and share my heart and fears and to have him be so receptive. I think in the days ahead that conversation will be so valuable to us both!
Zach had 18 vials of blood taken on Thursday Nov 3rd. On Wednesday Nov 9th he had the MRI with contrast done. We were told we’d get a follow up appointment two weeks after the MRI. I’m SO proud of Zach for not just sitting around and waiting. He went up to the office on Friday morning and said he wanted an appointment on Monday. And they gave him one! Man is persuasive in a suit 😉
Our appointment was at 3:15 yesterday. Both girls had school that morning so I filled my time with errand running. It was tough to focus all day but staying busy helped!
Saw this at Hobby Lobby 💜
Mrs. Charlotte came to sit with the kids and Casey brought Carter over once he was up for nap so there would be plenty of fun and distractions for them both as well. We got to the office a little early. And then sat FOREVER.
I read almost two full celebrity magazines 😉
We got there at 3:15 and the dr came in to see us at 5:00. The only interesting thing while waiting was the nurse took Zach’s blood pressure and it was super high so it let me know that Mr. I’m-Not-Nervous was at least a tad nervous after all 😉
It was weird because in movies you ALWAYS see people in an office set up sitting side by side when the dr comes in. Instead we were just in a regular exam room and were sitting across from each other facing each other. He came in and I have no recollection of his exact phrasing but he let us know that the MRI shows that Zach has MS.
I know it may sound dumb to say it was a shocker because it was the worst case option we were given at the last appointment so I shouldn’t have been super shocked. But I was. I literally only had ONE question written down to ask him because I didn’t Google. I didn’t research. I didn’t WANT to look into things especially when there were just so many options of what it could have been. I probably apologized for not having more questions like 10 times haha It’s not like me to not be prepared. Here’s what I recall us discussing…Zach and I just tossed in random questions as we thought of them.
- All the blood work labs came back clean which is normal for MS as it doesn’t show up in lab work
- The MRI with contrast caused ONE of the spots on Zach’s brain to “light up” which means he has MS.
- My one question was hereditary, I figured whatever Zach has it was a valid question to ask. He said that the exact cause of MS is unknown but that those with direct family members with it are at higher risk for it (so whatever precautions we gotta take with our babies you better bet we will be taking!)
- He said some people consider it auto immune and some don’t and that many think environmental factors play a role in it.
- Healthy diet will be very important. Thankfully we are already pretty healthy but it’s an area we will have to research and learn more (Zach and I both do not wanna be the whole anti-gluten paleo whatever else trends and thankfully, from my research so far, I think it’s mostly just focusing on eating healthy overall and isn’t that specific)
- Zach asked about life expectancy and the dr said as long as he follows the health care regimen and takes his meds that it shouldn’t be lessened at all (I saw in some paperwork that it typically only shortens life by up to 7 years, so not bad!)
- Heat is something he really focused on. He said it’s crucial for Zach not to get too hot. We need to make sure he has cooling hats, vests, etc to wear when doing outdoor stuff and he even recommended getting a mister to hook up to our water hose. Thankful we got this news during the cooler months so we have time to figure out plans of action for the South Ga heat! 😳
- It’s not curable. 20 years ago people were handed some steroids and told “good luck” but medicine has come SO FAR and now there are so many treatment options available to us.
- It is a take medicine everyday for the rest of your life type thing. He said there are pills, shots and infusions (much like what Courtney and Mrs Charlotte deal with). We are hoping Zach’s will be the pill form option.
I LOVED our dr. He was knowledgable but SO KIND. As I kept apologizing for not having questions he said he would send us home with a lot of stuff to read and that we will meet again to go over more in depth questions. He also talked a lot about his son and what he’d tell his son to do which I appreciated so much. It was a very personal touch and made me feel like he really had our best interest at heart.
As far as what the next steps are:
- Zach will get a spinal tap done to put it “in concrete” that he does have MS. It’s what will make the diagnosis official and will give us more insight into exactly what we are facing.
- He said he’d like for him to still have the heart test done to just check everything. At first we thought that was silly but in my little bit of research so far I think it may not be a bad thing just to make sure his body hasn’t been affected by this in anyway.
- Once we have the spinal tap results we’ll meet with him again and then he wants us to go to Shepherd Center in Atlanta. He said they are the specialists and that they will be the ones who tell us everything we need to know. He said if they say something that doesn’t agree with whatever he’s told us that we should trust them more than him as they are that good. (Which made me think even more highly of him because that’s a GOOD dr to admit that others may be more knowledgable!)
We went and saw the MRI and compared it to the one without contrast (on our way down the hallway I didn’t even look at Zach. Last time I could joke a bit but this time I knew I’d cry). He has several spots on his brain that did NOT light up with the contrast. The dr said that those spots could be other injuries (football, hard falls, etc) or could be past MS episodes (I know there’s a technical term for what they are but my knowledge base isn’t there yet). The one spot that lit up is located near the vision which makes sense for his symptoms. He hasn’t had symptoms in a month but that’s normal with MS for them to come and go. I guess the way it works is that spot will become inactive but will always be there (I read somewhere that multiple sclerosis means “mental scarring” bc it leaves scars on the brain) and that as he has episodes other areas of his brain will have spots and depending on where those are located that decides what symptoms he’ll have.
The dr himself went on a hunt to find me lots of materials to read over. It made me feel better too when he made a comment that Zach’s MRI “knocked him off his feet.” He said he couldn’t believe this healthy young man has this disease (or illness, again I’m not even sure). Knowing he was as shocked as we are made me feel comforted.
I held it together and then instantly cried in the parking lot. Even though I knew NOTHING about MS I knew it was our “worse case scenario” so I mean it can’t be good, right?
We left there at 5:30 and went by Walmart to pick up a piece of Britt’s new bed that was delivered and just to give us a minute to collect ourselves before seeing Mrs. Charlotte and the kids. I started reading over the materials. They all went over what MS is and kinda what to expect etc. There are different types and MS is something that truly varies from person to person. No two cases are exactly alike. There is a type where someone has ONE EVENT and then NEVER has another one. I’m praying that’s what we are dealing with here 😉𝨝𝨝 85% of people with MS have a type where they have symptoms for a brief time and they don’t cause permanent damage (like Zach’s vision went back to completely normal after that time period) and then they don’t have another event for a super long time. It SOUNDS like from the medicines I’ve read on in the booklets that by taking the meds daily and by taking care of himself (healthy eating, exercising daily, limiting heat, getting 8+ hours of sleep a night etc) that he can lessen his chances of future episodes as well as the severity of them. Which is great! Zach and I both like that we have SOME control over this. There are things we CAN (and will!) do that can have an impact on his situation.
Two things that stood out to me in my brief read-overs of the booklets:
1) This dude is older than Zach. And looks super healthy and is still holding his young son on a mountain top. If he’s cool then Zach will be cool too 💪
2) I keep thinking about this in my head a LOT. Listing it this way says that this will just be a small addition to his normal, every day life. It’ll be our new normal and it’ll be just a simple pill and then on with his day!
When we got to the house I left the booklets in the garage. The kids were eating dinner (McD for the win…they better have enjoyed it b/c they probably won’t be getting junk food much anymore now! 😜) and I visited with everyone then asked Casey and Mrs. Charlotte to leave the room with me. We kinda just agreed in the car that I’d tell them. So I just flat out said it. “It’s MS” because I mean what else do you really say?
I pretty much sent that exact same text to anyone who’d asked how things were going or had said they are praying. Once we got the kids in bed I called my dad and Katie. Katie is the closest friend to BOTH Zach and I so I knew she’d want to talk on the phone.
It’s hard to understand how SO MANY people have been lifting us up in SO MUCH prayer yet this was still the outcome. We just have to remember that it’s not about the answers we think we should be getting or “deserve” to get or want to get. I don’t think God gave my husband MS. But I know HE is there to guide us through it. And I know that there are still so many reasons to give thanks in this storm and so many prayers to still be lifting up.
I mentioned in the post before about the possibility of miracles and I still believe that could happen. I’m not sitting here being naive or holding out some big hope for that. But we COULD get the spinal tap and go to the specialist and be told it’s not what’s going on. My main prayer focus now is:
- To have the least life altering form of MS possible
- To have a clear plan of action to minimize life changes for our family
- To have a clear plan of action to minimize long term affects of this
Zach is okay. If you know him personally and want to reach out, please do. But his biggest thing is not feeling like people feel bad for him. He’s VERY positive and VERY confident that we’ll just do what needs to be done. That he’ll handle this and be fine and that it won’t affect him. He and Mr Rusty are so great with that positive mental attitude!
While I LOVE that confidence (hello it’s why I was attracted to him from day 1!) I just wasn’t ready for that yet. I’m upset. I know I’ll have to suck it up. I know this will become our new life and our new normal and we’ll face it and we’ll fight it and we’ll rock out. I know all of that. But I need to just be scared and feel sad a little bit before I’m ready to put on my armor and fight.
In that moment last night allllll I wanted was my mom. There are just certain moments in life where you need you mom to hold you. I just wanted to feel her hold me and be able to cry and cry into her arms. I felt super weird doing it but I told Zach I needed a female embrace that he just couldn’t give to me right then. So I drove over to his parent’s house. His mom isn’t my mom. She doesn’t know what I need like my mom would. But I just went for it and pretty much sobbed uncontrollably into her arms. Kinda embarrassed that Mr. Rusty could totally hear that 😳 but thankful that in her own time of pain she was there to comfort me in mine. 💗
On my way home this song came on. It was a HUGE comfort to me when all of my stuff with my mom was going on and it felt good just to sing it as loud as I could and just let myself cry as much as I needed.
I feel okay about the short term. I feel like we will knock out these appointments and learn everything we can learn and figure out a plan of action (yall know how much I LOVE a plan of action!). I’m not sure how urgent Zach feels about everything but for me I’m not in some huge rush to get the spinal tap results or go see the specialist. I need some time to let this all digest and to learn what I can about what we are facing so I WILL be prepared with questions to ask when the time comes!
My tears come in thinking about longer term. How will this change our futures? I wish it was ME with this rather than him. I totally tell people all the time that I’m a straight up 50s housewife and I love it. I’ve never been about “girl power” or “independent women” I LIKE needing my man and I LIKE that he provides for me and takes care of me. And he likes that too. He likes to be that strong support system for our family. It’s a big part of the dynamic of our family. I KNOW that doesn’t have to change and it may not change but I’m just really scared that it might. The word “disabled” scares me. Not just physically but I worry about emotionally how that will affect us. Zach’s back surgery has been tough this year. His ongoing nerve issues with his leg have been hard on him and I hate seeing him struggle with that. It bothers him so much to ever need to ask for help and I don’t want that kind of situation for him in the future where he’s having to rely on others. I know I can’t focus on all of the long term stuff and at the same time having those longer term concerns are good motivators to make sure in the present we do everything possible to avoid such issues from ever happening!
As for the kids I’m not really sure what if anything we should tell them. I don’t want them left in the dark. I know Kye especially would be really embarrassed to learn that all these people know something is going on with his Daddy but he doesn’t. I’m big about being honest with our children but being age appropriate about it. So I feel like a talk may need to happen just to let them know that nothing is going to change but that if people say they are praying for us, that’s why.
We didn’t get good news yesterday. But God is still God. And Zach is still Zach. I am still Me and we are still US and no diagnosis is going to define us or change who are are. I don’t want people to see Zach and think “that dude with MS” My goal is for us to conquer this so well that people are shocked when they learn he has MS. I know he will use this as a tool to be a light for Jesus and will be such an inspiration to so many others who will walk this journey after him.
I keep thinking about my Uncle Spear. He was SO healthy and such a man of God and then bam! out of nowhere he got diagnosed with ALS. Zach is so strong. So healthy. Such a man of God. It didn’t make sense HOW it would happen to my uncle and it doesn’t make sense HOW it could happen to Zach.
You always hear about bad things happening to good people. It can feel frustrating at times because the “bad people” always seem to have the easier lives. Satan is real. He knows how to tempt us and what our weaknesses are and he will attack. God doesn’t give us struggles. God doesn’t cause us pain. God doesn’t give us fear. God is GOOD. He is here to lift us up and carry us through the times of trial. I cannot WAIT to see all the ways HE will show HIMSELF to us in the months ahead!
I know God has great things planned for us and that even these trials have opportunities for spiritual growth. The hardest thing I’ve experienced in my life so far has been all of the pain associated with my relationship with my mom. It sucks. But I wouldn’t change the person I am today because of that experience. It helped me to become a better version of myself. A better mother. A better daughter to God. I believe that this diagnosis will do the same for Zach. It’ll be his biggest personal trial but he will only grow and become an even better version of the already amazing person he is. I’m thankful I get to be the one to walk along side him through this and to experience all the blessings God has in store for our family once we get out of the wilderness and enter that land of milk and honey. We will stand firm in our faith and walk through this wilderness together.
I asked the dr what he’d advice his son to do if his son had just gotten home study approved for adoption. The dr looked at Zach and said “is adoption something you want in your heart?” Zach said yes and so the dr said “then I’d say adopt!”
Right now we’re still SO early in this it’s hard to know where the path will take us on our adoption journey. I did reach out to our consultant to ask (I haven’t yet heard back from her). I did google a little and from what I found the MS diagnosis can make adoption more difficult, could make it where we are no longer home study approved, but can also be possible. God lead us to adopt. But that doesn’t mean He lead us here because it’s where we’re meant to end up. Zach’s needs come first for me. Once we figure those things out then we will better know whether or not this is something we can continue to pursue.
Please continue to pray about that for us. We both feel so lead to adopt and both feel so excited to add another son to our family. I believe our struggles since the MINUTE we decided to adopt have been proof just how much favor the Lord has for adoption. Satan is putting up a strong fight because he knows God has something big in store for us.
One year ago today was the moment our adoption journey began. It is when I went to Britt’s class for her Thanksgiving Feast and when I met another family who had adopted. Their story pricked my heart in a huge way. Now a year later THEY are adopting again (from India) and I went to see both my girls in their classes for their Thanksgiving celebrations. It was hard for me to focus on being in the moment for them as I kept thinking about last year. How much has changed in that year and just how crazy life truly is. We don’t know what tomorrow will bring or where our path will take us but we know who will guide us down it and I just pray that His desires are made clear for us in treatment, in plans of action, in our adoption.
I cannot thank everyone enough for their prayers through this time of waiting. Please continue to lift us up as we cope with this news and find out more specifics on diagnosis.