On Saturday we made the drive with our youth group to a camp in South Carolina! Jake is staying at camp with the teens and I am at a rental house with the boys. I have two friends here to help which is a game changer!
Every year I get anxious leading up to camp, as the devil always seems to find a way to attack our family to keep us from going. I was feeling like we were in the clear until Friday night when Malachi started having some major seizures. He had 5 big ones right in a row, each lasting about a minute. They scared him (and us) so he was uncontrollably sobbing after and during each one…and that is absolutely heartbreaking to witness.
We started through the checklist of what it could be- could it be just a simple ear infection or something complicated like a shunt malfunction that requires emergency brain surgery? Sometimes we can get Malachi to pinpoint what is hurting him but this time the pain was too intense to even stay calm enough for him to communicate.
I will spare you the details of all of the medical interventions we tried but one of them must have worked because he finally calmed down enough to fall asleep. Those seizures take so much out of his little body.
I don’t know if any of you have a unique life like we do, but when you live it every day it just seems so ordinary. The medical tasks have just ingrained themselves into our routines to the point that we don’t think they are out of the norm. But as I packed our bags for the trip, making sure to pack all of the medical supplies we would need I couldn’t help but realize how complicated our days can be.
When we travel far from home we have to think of every possible scenario and plan for the worst. Updated medical summaries, oxygen tanks and cannulas, pulse oximeter machine and sensors, extra g-tubes and extensions, special seating for Malachi, not to mention all of the medications. I spent the two weeks leading up to our trip calling and coordinating deliveries for formulas, diapers, and feeding bags as well as all of their medication refills.
Medications for most people involve a standard Walgreens pharmacy, but for the boys we have to use four different pharmacies and have some of their specialty medications shipped. Both of the boys are on special formulas that are not sold in stores. There has to be a whole lot of planning before we can commit to out of town adventures.
Adding to the chaos is sweet baby Levi and his antibiotics for his double ear infection. The antibiotic we went with this round had to be stronger than the last and has upset his stomach severely. I will avoid painting you a picture, but we had to pack a whole lot of extra outfits (in dark colors haha) for Levi and momma.
Leading up to camp we tackled our regular appointments…
Malachi went to swim therapy.
Levi rocked his physical therapy session, standing independently for a few seconds!
Both boys went to feeding therapy. Levi is improving by leaps and bounds! In this photo he is signing for “more noodles”.
And Malachi went to hippotherapy and got to ride one of his favorite horses, Chica. The summer heat has officially arrived here in southeast Tennessee and Malachi shuts down easily. He was wiped out after just 15 minutes.
Jake has been running in the evenings and taking Levi in the jogging stroller. We try to keep things like this a secret from Malachi because we don’t want him to feel left out, but Jake accidentally talked about it in front of him one day this week. You could see a bit of jealousy in his sweet eyes and we never want Malachi to feel left out. Jake rigged up the jogging stroller so Malachi could give it a try, and he giggled the whole time. Unfortunately the stroller isn’t supportive enough for him so we won’t be able to make it a regular thing but it sure did make his day to get to run with daddy.
As you might remember, back in 2017 I wrote a Facebook post about a sweet encounter we had with a mom and her children at a Chick-Fil-A. God caused the post to catch fire and in the lat 2 weeks it has seemed to spark again. When this happens lots of visitors find the blog…as an example of the insanity, just today over 18,000 people have visited the blog. WHAT?!?!
Let me rewind a bit and remind you how this blog began. When Malachi was born at 24 weeks we found ourselves repeating the same medical updates over and over again to family. Repeating the bad news so many times was very hard on my heart so we began writing daily updates. God drew Jake and I very near to Him those dark days and would lay verses on my heart to tape to Malachi’s incubator each night in the NICU. We started sharing those verses at the end of each daily update.
When Malachi came home after 4 months in the NICU we decided to continue to updates, but change it from daily to weekly. And here we are 6 years later! To be completely honest, the blogs are more for me than anyone else. I need a place to dump my emotions, fears, and thoughts each week and then leave them behind to start fresh. God continued to lay verses on my heart each time I wrote so I just kept adding the devotional thoughts at the end.
Fast forward to today. The updates are something I still need to do….for me! I have thought about stopping so many times and each time this happens God clearly tells me it isn’t time to stop yet. There are weeks like this one where writing the blog is difficult and something that weighs on my mind during a busy day. They typically take at least 2 hours to write, and I sometimes can’t start until after the kids go to bed at 11. But if I can offer anything to God, obedience is most definitely an easy thing to focus on.
As God has brought an audience to our journey I have been absolutely awestruck. Literally speechless. While I love to write, my skills alone are not able to draw a crowd of thousands. God is up to something y’all. And I am as in the dark as each of you.
I get a lot of messages talking about my faith, so tonight I want to address that thought.
My faith is sometimes weak.
I am not doing a fake humility thing by saying that, just being 100% raw and transparent.
But this week as I read all these messages talking about my “extraordinary faith” I started to feel a bit uncomfortable. I see so many holes in my faith, and I started to worry that maybe I haven’t correctly portrayed the struggles I face with keeping that faith.
And to be honest, I feel inadequate many times. I think back to the conversation God had with Moses in the wilderness after he told him to go and speak to Pharoh in Exodus 4:
10 Moses said to the Lord, “Pardon your servant, Lord. I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue.”
11 The Lord said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind?Is it not I, the Lord? 12 Now go; I will help you speak and will teach you what to say.”
When I read those words I cringe when I apply them to myself. I want each of you to apply them to your lives as well. We make so many excuses as to why we can’t serve God. We find so many reasons we are “unworthy” to share our faith with the world. But like God plainly stated to Moses, He created each of us and knows what we are capable of doing for Him.
We are just called to obey.
I don’t know what things you may be dodging right now. Maybe there is something big God has put on your heart to do, but you have allowed the excuses of feeling inadequate to keep you from committing.
Just remember that the God who created you knows your capabilities much more than you do. So if He calls you to it, assume that He has given you the ability to accomplish it with His help.
He is just looking for people ready and willing to be the hands, feet, and mouthpiece for Christ. Are you truly willing to step out in faith?