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?
11 thoughts on “On the Road Again”
I don’t know how I came to read your blog but it is a gift to me each week. Sometimes your words answer my prayers; other times they allow me to share God’s answers with others. May God’s blessings and peace enfold you and your beautiful family.
I am one of those who saw your story on Chick-Fil-a on Facebook today and was so moved I had to go to your blog to learn more. I too was amazed and inspired by your faith. And actually wrote in my journal two verse you quoted in 2 different blogs. Both hit home to me. I love your honesty about your faith because it is something I think we all Question sometimes when our struggles seem so great. You and your family are amazing. Please continue to share your family, emotions and faith with all of us. I know I will keep you all in my prayers.
I very much look forward to reading your blog each week. I love the updates on your beautiful family. May God continue to bless you and inspire you.
THANKS FOR SGAREING
Sent from Windows Mail
I read you most recent 2 entries I must say I love your strength. Malachi and Levi are so blessed to have had you two chosen to be their parents. Speaking from experience it takes strong people and bond do whatever it takes for your boys. My 7 year old was born at 23 weeks and I just felt an instane bond to your story. Continue with that strength and faith mommy..
I found your blog this morning for the first time and want to tell you (with tears in my eyes) that you are a wonderful writer. You reach the heart—there is no more successful writing or speaking goal. ❤️ I felt that I could feel some of your pain—I read about the grey robe…. Know that your experiences open peoples eyes, open their sympathies and encourage them to have their own walk with God and to find in Him the ability to be faithful as you are. I’m sorry you have so many trials, but I am so proud of your descriptions that have the Lord all over them. He is using you. May He strengthen your heart and keep you smiling and depending on Him.
I’m married to a pastor—our first anniversary is in 6 days. We have no family anywhere near us and experience some struggles and trials, but there are many blessings in our lives.
My 9 year old niece is in a wheelchair. She has ulcerative colitis (hasn’t grown in a long time) and severe arthritis. When I’m with her I have the challenge of explaining to her and watching children, that different is ok…. I try to tell my precious niece to rest in Jesus care—that somehow what she suffers will have results of people drawing closer to God. There is nothing sadder than watching a child endure pain, rejection, failed procedures, and disappointing limitations. And then to see courage and beautiful smiles amidst it all! She makes me wish we all had her sweetness.
God’s richest blessings to you,
A sister in Christ
Praying this is a fun and refreshing week for you and the kids, and that your youth will have a wonderful camp experience! And also prayers for those antibiotics to do their job WITHOUT the side effects!
Beautifully written blog giving it all to God
I found you through your viral post, too, and as a PreK teacher, mom, Nana, and believer, my heart melted! What a beautiful story!
I also go to a church camp in the mountains of SC, called Palmetto Bible Camp! I’m an SC resident, too!
Wow! I just saw the Facebook video. So precious! Then to visit your blog and read some from your heart; what an encouragement. You are a wonderful testimony for the Lord.
Leah, I am a first time commenter, I found your blog several months ago on Facebook with the Chick Fil A story attached and it led me here to the blog. I started reading current posts then went back and started with Levi and read all the early posts. I am working on reading Malachi’s older posts as time allows. I have a granddaughter born in March 2018 with significant special needs. She has a unique diagnosis and the professionals seem to be at a loss to ‘fix’ her. She also has hearing and vision issues and a host of problems the meds cause. I so enjoy following your journey as our little one, while not having the same diagnosis, has some of the same treatments and tests and procedures as your little guys. She is currently on tube feeds and the g-tube is in the near future, as soon as they can figure out how to do it without jeopardizing her during the surgery as she cannot be off the NG feed currently. When she ‘crashes’ in public places the intervention is pretty scary to bystanders and her levels have to come up fast so she doesn’t have a seizure. So far only 1 has happened that we know of. My son is a single Dad to her and her 3 year old brother and he handles her better than the pros, much like you with your boys. Anyways, I just wanted to let you know how inspiring I find your posts. You are so articulate and explain things so well, and you take such good care of your little ones! I find your knowledge to be so very helpful to me in understanding so much of this stuff my granddaughter experiences that are similar. You explain the tests, procedures etc well enough so that I understand and can apply that knowledge to our experiences. Too me that is a big help and I appreciate the time and work you put into your posts. I also really enjoys the scriptures you post and how you explain how they apply to things happening in life. So thanks for all of this! Just know by writing these posts and sharing your lives, faith and children you are probably helping more people than you realize in more ways than you realize and that itself is such a blessing! Hugs to you and your beautiful babies, Linda