Everything is going to be alright

“Don’t worry about a thing, ‘Cause every little thing gonna be all right.” Can we get some Bob Marley on repeat, please!? Who’s with me!? Lord knows in the midst of our chaotic world right now, I need all the reminders I can get. When I sat down to plan out my April intentions, I started thinking about what was going to be my monthly mantra, vibe and word of the month. Here’s what I settled on:

April Manta: “Everything is going to be alright.”

April Vibe: Confidence

April Word of the Month: Adapt

You know, it’s easy to write those things but then to actually believe them and live them out daily is a whole other ball game. Let’s face it, none of us knew we would be where we are today. Who had ANY idea that we would be in the midst of a full blown medical pandemic that drastically changed our daily lives, effecting our jobs, schools and economy as a whole. I know I didn’t but I know who did, the Big Guy upstairs. I mean… I still don’t fully understand why this has all happened but what I do know is that we live in a very broken world full of very broken people, maybe God’s just trying to remind us what is truly important and matters in life? Or maybe he’s trying to slow us down? Who knows, regardless, we’ve had to make MAJOR adjustments that have led to anxiety, worry and fear. Que Bob Marley (and God), “Every little thing gonna be all right.”

CONFIDENCE

The thing about the word, confidence, is that it can be interpreted several different ways. We can be confident in our self, our jobs, our bodies, in our faith… the list goes on and on. When I chose this as my April “vibe”, I wanted to be CONFIDENT in the midst of the unknown and uncertainty that everything would work out and that we would remain safe and healthy. Before this pandemic hit our world, this was already something I was constantly battling. With the challenges and unknowns of our son, Kai’s, complex medical diagnosis’, I fight daily to be confident in God’s plan for him. I pray, spend time in the Bible and talk with family and friends often to cope with all Kai has to endure but it’s not always easy to simply say, “God’s got this”. Although, I do honestly believe that and I feel as though my experiences so far have better prepared me to truly enjoy life, even in the midst of such uncertainty and fear. But isn’t it funny how just when you get comfortable in something or more confident, another curve ball is thrown your way? Another challenge… job change, medical diagnosis, pregnancy, leadership opportunity, new relationship, losing a loved one… man this list is endless and not necessarily all positive or negative. But these major life changes always seem to come in the moments when you just. finally. get. settled. Ugh! And sometimes… multiple circumstances hit all at once. And sometimes… they happen in the midst of a worldwide pandemic. For example, moving to a new house and selling yours, that’s a pretty big life change. We just thought, why not do it during all of this chaos, just for fun! *Put on repeat: Everything is going to be alright.*

For Sale Sign
Shout out to our awesome realtor, Kathy Smith! She has gone above and beyond throughout this process.

In all seriousness, Danny and I had been talking about moving for awhile now. We know that Kai’s future will consist of developmental delays, including delayed walking. This will lead to him being in a wheelchair and walking device for quite awhile but we’re hopeful that won’t be forever. Currently, we live in a four level split with a lot of stairs, which just isn’t ideal for Kai’s mobility. Although we love our house and our neighborhood so much, we started the hunt for a ranch style home.

Before the coronavirus outbreak, we had been looking at houses regularly. We continued to look in a pretty specific area and were only looking for ranches, so our options were far and few between. Right before the big breakout of the virus, we went into contract on a brand new build ranch home in Gahanna. We were thrilled! And of course, now we had to sell our home. We listed our house on a Monday and had eight showings within that same day. It was definitely nerve-racking because, by this point, Governor DeWine had already put the state of Ohio on a shelter in place order. But real estate was still considered “essential”. So, we took extra safety precautions by providing wipes, gloves, a hand washing station and Lysol spray. Then we opened our house to scheduled showings and left for the day. We completely deep cleaned our ENTIRE house after the day of showings, just to be safe. We received several offers that night and in less than 24 hours, we were in contract! It seemed as though everything was working out, even in the midst of a pandemic.

ADAPT

Clearly, we really had to embrace my word of the month, adapt, already by this point. Although things weren’t ideal, you know – moving during a crisis, they were still working out and we were moving towards our new home! *Que glass shattering* Just two days after going into contract on our house, we received the inspection report on our new home. You know, the brand new build we planned to make our long term home… welp. Let’s just say, I won’t go into how bad it was or who this private builder is but our inspector called our realtor, Kathy, and said “this is the most amateur and poor work I’ve ever seen on a new build,ever.” Not what we wanted to hear: potential foundation issues, flooring problems with missing joints, roofing issues, crappy finishing work, electrical hazards, missing gas shut off valves… eighty-five pages of things wrong with this BRAND NEW house! 85 PAGES! I could go on and on about this but let’s just say, we terminated our contract. So, here we were, in contract on our house and no home to move into during a pandemic – in one of the hottest housing markets in the country – looking for a very specific home, in a very specific area. Not to mention, something we had already been searching months to find previously. We weren’t too optimistic at this point. *Breathe: Everything is going to be alright. *

House
Our first home. We brought Kai home to this house. We will miss it.

So, onto the SparkNotes version, so this post doesn’t end up being FOREVER long. From here, we had to find a way to solve this problem all while staying as safe as we could. Previously, we had looked at new build M/I Homes in Minerva Park, so we went back there the same day we terminated the Gahanna house contract. (Gahanna house being that crappy new build) I would say we were super lucky but I don’t call it luck, I think it was God’s plan all along. Who knew… they had a 3 bedroom/2 bath ranch with full basement (just like the previous house) that was available and the buyer fell through! This house also cost less than the home we were originally going to purchase and had several upgrades in the contract from the previous buyer. We walked through the home (still in studs and being built) and went into contract that day! Whew! So, now we finally have somewhere to live, even if the timeline isn’t perfect. We adapt. Less than 72 hours, we were in contract on a new home, put our home up for sale, had showings, received offers, accepted an offer and went into contract, had an inspection on our new house, terminated the new house contract because of inspection, went to M/I homes, looked at another new house there and went into contract on it. Talk about anxiety! *Sing it: “Every little thing gonna be all right.”*

What’s the silver lining here? Well, Danny works a full time job at Scott’s Miracle Gro and has a lot on his plate. I just started a new business, Better Together Playnasium, with my mom, watch Kai full time and participate in various other community activities. Due to COVID-19 and being mandated to stay home, Danny and I were both here to make quick big decisions together. Not to mention, we had extra time to pack up/clean our entire house in preparation for showings, go to M/I Homes immediately after terminating our Gahanna house contract and visit the M/I design center to make design decisions to keep the building process going on time. We would have never been able to do all of that as quickly as we did if we were continuing our busy life as it was before this virus. It’s funny how seamlessly all of that fell into place, even if a bit scary and having to take extra health precautions. I continue to think God has one heck of a sense of humor and I stand by that statement. Needless to say, we will be out of our existing home by the beginning of May and will most likely be living temporarily with my parents until our new house in Minerva Park is complete. We are praying that it’s done by the beginning/middle of June as projected so we can move then. We welcome all prayers for that! Haha! Again, on repeat, everything it going to be alright.

Oh… you thought this was the end? Gotcha.

Whew! Housing settled, okay cool. Oh, it’s only April 4, it’s cool. We’ve got this thing called quarantine figured out. We will hunker down now, hang at home and pray we get through this virus quickly. Right? Nope! And just as we are somewhat confident and comfortable, Danny and I noticed that Kai’s shunt (a permanent device implanted in his skull/brain) looked a little different than normal, possibly larger. So, why is this concerning? Kai’s shunt is a device that drains spinal fluid out of his ventricle. Yes, I didn’t type that incorrectly, we normally have two ventricles but Kai only has one large “mono-ventricle”, if you will. If he gets too much fluid built up in that ventricle it causes him intra-cranial pressure, resulting in very intense headaches, possible seizures and potential damage to his brain. So… I guess you could say this little device is important. And if not functioning properly, the only way to fix it is with surgery. Brain surgery, hmm… that sounds like fun during a pandemic, ammiiirrriiight?!

Kai Shunt
Kai’s Shunt     Shunt Image

After contacting Kai’s neurosurgeon, expressing our concerns and sending some pictures, they said to just monitor from home for signs of shunt malfunction. These symptoms consist of fever, headaches, vomiting, sleepiness, extreme irritability and in Kai’s case, increased seizures. But most of these are just guessing games since well… Kai isn’t talking or communicating much yet, so we don’t ever really know how he’s feeling. We continued to monitor for a day or so, then Tuesday evening he started acting strange. Much more “out of it” than usual and he ended up having four seizures all within an hour. Of course, where do our minds go? Right to the negative, this is it, his shunt is probably malfunctioning. But last thing we want to do during a pandemic is go to the Emergency Room! We called the on call neurologist and since his seizures at that point had stopped, we were told just to monitor him. We got Kai ready and put our very sleepy kiddo to bed, apprehensively, since when Kai is sleeping we don’t really have a way of knowing if he’s seizing or not. (We are in a battle with insurance and working to get a “qualifying medical diagnosis” to get an at home pulse ox monitor to help notify us at night – that’s a whole other story) Danny and I rotated every hour throughout the night, getting up to check on him to make sure he was okay and not seizing. *Repeat: Everything is going to be alright, it will. I think.*

Kai and I in masks
Shout out to our sweet church friend, Lora, for making these awesome masks for us!

Morning arrived and Kai was thankfully acting like his usual piggy self at breakfast. Then in true fashion of parenting a child with complex medical needs, we received a phone call. “Hi there, your neurosurgeon would like you to come into the hospital for a limited MRI and shunt series imaging.” Me: “Okay, when?” Receptionist: “Now, if you could report here by 10:30am for an 11am scan, that would be great.” (It’s 9:30am at this time) Alrighty, then! Quick shower time, (since I obviously need to –  I’ve been in quarantine) then pack up a bag including necessary masks and rush to Nationwide Children’s Hospital!

I will commend NCH on their safety precautions, I was very impressed. They met you at the door, required you to take masks and use hand sanitizer. The only bummer was that they only allowed one parent in the hospital per child. So, Danny had come with us and had to leave and go back home. I mean, I get it, limit the number of people in the hospital as a whole but it still sucked. We arrived for Kai’s limited MRI, he was a trooper, per usual. He had to go in alone without me because they again were limiting the number of people in that room. Next up, radiology. Another round of holding Kai down along with a radiology tech to get necessary imaging of his head and stomach. (where his tubing from the shunt attaches) Check! Lastly, head to the neurosurgery outpatient clinic and meet with the Nurse Practitioner. Sitting… waiting on results… its the WORST! *Repeat: Everything is going to be alright.*

The Nurse Practitioner comes into the room, introduces herself and says “The shunt looks great, everything is working as it should.”

HUGE SIGH OF RELIEF. Being admitted and having to watch my child go into brain surgery (without my husband allowed to be there) was not on my list of things to do today. Thank Jesus! Yet, as it always seems to be with Kai, then why does his shunt look bigger? Why did he have increased seizures? And why was he smacking his temples as if his head hurt and grabbing at his shunt? Who knows… not even the doctors at this point. In Kai’s case, there are so many unknowns, so many things unanswered, so many moving parts that play into his care. If you think about it, it’s kind of like the world we are living in right now. How long are we going to be in quarantine? How exactly did this get here? Will someone I love get it? Who knows, not even the doctors. Yet, just like it always ends up being with Kai, it will be for all of us too. Every little thing is gonna be all right.

I was incredibly grateful for that NP’s help in the clinic, just yesterday. She helped get me in touch with someone on the neurology complex epilepsy team to make a plan for Kai if he did have more seizures at home during this quarantine, to make sure we can avoid the ED (Emergency Dept) at all cost. She showed me all the imaging and introduced me to the head neurosurgeon who was in the office that day who, if Kai is lucky enough to be an epilepsy surgery candidate, would be the doctor doing the surgery. (Another blog post to come about Kai’s epilepsy surgery options and details later) We were the only ones in the clinic at that time and were so well taken care of. As we were packing up to leave, with our masks and gloves on, Renee (the NP) turned around and gave me a huge hug. Yea, yea, yea… I know. We aren’t supposed to be doing that. Hey… she’s a doctor so I assumed if she thought it was okay then it was? Regardless, in that moment, assuming she could sense my anxiety and relief all at once, she embraced me and I felt just a little bit normal again. Even if just for a few seconds. Then do you know what she said? “Mama, you’re a trooper. And everything is going to be alright.” And you know what Renee, you’re right, it is. And friends, it is for you too.

 

6 thoughts on “Everything is going to be alright

  1. Oh my goodness Amber. Your steadfast faith through all of this continues to amaze me. ❤❤

    Liked by 1 person

    1. Thank you so very much my sweet friend!

      Like

  2. As always you leave me crying. You write from the heart

    Liked by 1 person

    1. haha sorry!! But that’s also not hard to do! lol

      Like

  3. Lucinda Wiseman April 10, 2020 — 11:02 am

    Glad to hear all went well! Would be interested to hear the epilepsy surgery options they gave you since they told us Ella wasnt a candidate due to her brain abnormalities.

    Liked by 1 person

    1. I am curious too! I will let you know as soon as we have the testing and meeting with the team. Originally, we were told the same thing with Kai’s brain abnormalities too! But then his neurologist thought otherwise. Have you ever considered a second opinion at Cincinnati Childrens?

      Like

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