When I opened this entry to start typing the website had a prompt question: Is your life today what you pictured a year ago? What a dangerous question for parents of medically complex kids. There are so many highs and lows in a single year that it seems like a dangerous game to play.
One of the biggest struggles I have had to overcome is the grief I carry for unmet expectations. We all have dreams of how we *think* things should go, and when our pictures don’t match reality it has the ability to sprout bitterness. And then that bitterness can overtake the tiny but good parts of our journey.
So to combat it, I have had to make the decision to let go of expectations. Take life 24 hours at a time, knowing that each day is different than the last. And embracing each day as it’s own mountain to be climbed.
One year ago today Levi had his first seizure and second seizure just a few hours apart. I remember watching his movements and feeling my stomach drop. If you are a mother to an epilepsy warrior you will know exactly what I am talking about. Watching a seizure and not being able to take the discomfort away is one of the hardest parts about being a medical mom.
Seizures dictate and control a large majority of our day already with Malachi, so seeing Levi having one really hit me differently.
But here we are, one year later and Levi has remained seizure free for 364 days. He is medicated twice daily for them and will remain on them indefinitely. We know that there are spots of brain damage, so seizures were always a possibility and now that they have happened the likelihood of them continuing is great enough to keep him on meds for life. It is not a seizure type he will grow out of.
While my heart still mourns over another diagnosis for one of my children, I can’t help but thank God for answers and medications for these issues. And I am so thankful that we have been able to control them, as Malachi’s are still very much uncontrolled.
Let’s just take a second and look at these handsome boys and how much they are growing!
Malachi will turn 10 years old in February! And he is going through a growth spurt; carrying him long distances is getting increasingly challenging.
And Levi is freshly 5 and still hilarious. Someone asked him this weekend what the name of one of his stuffed animals was, and he casually answered “Mephibosheth” with complete clarity (a Bible character who had physical disabilities so we focus on him often). He has been singing lots of Christmas music lately, focusing in on one line and singing it over and over again. This week’s chosen line has been “Repeat the sounding JOOOOYYY” over and over and over again.
This weekend we gave the boys an early Christmas present- a weekend trip with my brothers and their families! Malachi woke up giggling the morning of our trip and was the most excited I have seen him in a very long time.
We had 14 people total and spent the weekend in a brand new rental called the Camel Condo at Ocoee Riverside Farms in Benton, TN. We were the first guests to ever stay in this place and let me tell you…it is pretty magical. I am going to reveal a few secrets as I tell you about our weekend!
Secret #1 There is a sloth in the living room named Flash. Like a real life sloth. He has a two story enclosure and the second story of it is inside the living room. Flash is paneled behind the glass but spent the whole weekend chillin’ with us.
Secret #2 There are hidden bunk rooms for the kids. To get into them they have to open the unsuspecting wardrobes, climb through the coats, and push on the back wall/hidden door.
We didn’t tell the kids and wanted to let them explore and discover them, but I also didn’t want Malachi to feel excluded from the process and sharing in their excitement. So we let Jake and Malachi go hide in the hidden rooms before we brought the rest of the kids in.
Secret #3 There are windows in the floor of the hidden rooms that look down into the camel and kangaroo enclosures in the barn below! The kids spent hours watching the animals, the animals curiously peeking back up at them!
Secret #4 There is a secret 23 ft tunnel that connects the hidden rooms that is filled with exotic fish tanks. This was one of Malachi’s favorite places because of the low lighting.
Here is a quick video for you, and you can see Ed the camel through the window below:
Secret #5 The beds are hanging from the ceiling. This was a little complicated for Malachi so he and dad drove back to the house each night (just a 5 minute drive), but we let him play on the beds during the daytime. And Levi thought it was so special that just he and I got to have a sleepover each night. We had to balance being excited for the one child and downplaying the excitement when Malachi was around so he wouldn’t feel excluded.
Side note: this was a delicate situation for us as parents; we presented this as an exciting thing to Malachi that he could have mom or dad to himself each night at the house and let him choose. Thankfully this worked and he didn’t feel like he was missing out.
Aside from the place being absolutely immaculate and so incredibly thought out, they have some pretty awesome experiences you can book. We all booked a farm tour which includes interacting with most of the animals. I will let the pictures do the talking.
We frequent this farm often, and the animals ALWAYS think Levi’s hair is hay. It cracks me up every time. This llama is my favorite animal on the farm due to his lack of social etiquette.
We also spent time with exotic birds, kinkajous (honey bears), coatimundis, swans, emus, and so many other fun things. Some of our crew rode camels and some rode horses and ponies.
But more than all of that, we created some pretty special memories together. Card games, bonfires, and lots of catching up.
If you are ever in East Tennessee I can’t recommend this place enough! The owners are friends of ours and really amazing people. They also have covered wagons you can rent to stay in and a house on the river. Here is their website if you are curious: https://ocoeeriversidefarm.com/
And the link to the AirBNB for the camel condo: https://www.airbnb.com/rooms/656097203443410530?adults=1&children=0&infants=0&pets=0&check_in=2023-01-02&check_out=2023-01-07&source_impression_id=p3_1671421578_zNOFPsDjCVtVINQw
This weekend was full of fun moments, but also full of reality checks. Jake and I attempted to include Malachi in every adventure that we could and our bodies physically did not handle that well. My muscles have been quivering with exhaustion from scooting him through tunnels and secret passages. I want to give him the world, and even though these adventure are still slightly attainable, there is going to be a day in which we will have to make hard decisions about what we say yes to.
Every year when Christmas music comes on I find myself transfixed on the words. So many of those songs become worshipful for me as I am reminded of the great gift of Christ. There is one particular line that my mind keeps clinging to this week and it comes from the song ‘O Holy Night’.
A thrill of hope the weary soul rejoices
For yonder breaks a new and glorious morn!
Weary Soul. Has your soul ever been weary? It goes beyond physical or mental exhaustion. It is a feeling of deep down hopelessness, like nothing you do will ever change the outcome. It is a feeling of being trapped with no solutions in sight.
The weary soul is a common trait of medical mommas. You hear so many bad reports that the idea of a good report seems unfathomable. To protect your heart from hurt you start to simply expect the bad and spend time bracing for the next blow.
Each and every time I have taken a ride on the ICU roller coasters with my boys I have experienced moments where my soul grew so incredibly weary. But I also experienced the thrill of hope these lyrics reference. The glimmer of progress, healing, and change. The bright eyes from the doctors that attempt eye contact rather than avoiding it. Talk of discharge dates and medication titrations.
And just like this song says, ‘a thrill of hope the weary soul rejoices’. Like a burst of fresh air from an open window, hope brings newness and fresh eyes. Hope excitedly expects rather than wishes and dreams.
So how and where do we find this hope? Even when I tried my absolute best, it wasn’t something that I alone could manufacture. There isn’t a seed you can plant that produces a crop of hope in your life. Hope is something that only God can produce in your life. It comes with recognizing His faithfulness through the hard parts. The Bible actually talks about it in Romans 5:
“And not only this, but we also celebrate in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.”
Hope is a breathe from the Lord when we continue to turn to him in the moments we are short on air. It is His gentle reminder that we weren’t made to do the hard parts of this life on our own, and He is ready and willing to walk hand in hand with us through the valleys and the mountaintops.
The thrill of hope is what keeps me going. I know that my children will be healed fully, either on earth through a miracle or on the other side in heaven. Without that knowledge the burden that I carry would be too much for me.
The thrill of hope allows my weary soul to rejoice even in the hardest chapters.
“And hope does not disappoint” because it keeps our eyes focused less on the seen and more on the unseen.
I am rambling now so I am going to wrap this up. Thank you for checking in on our family. We are so thankful for our community that offers love and support!