I have been slacking a bit in my blog routine lately; when I have sat down the last two weeks to write I have felt God’s leading to close the screen and try again the next morning. He knows me better than I know myself so I have been trying to be obedient and assume God’s timing has a purpose.
Levi is growing like a weed and moving fast into big brother’s hand me downs. There are still ”firsts” for us as parents, even though Levi is our second child. We never had a reason to really buy shoes for Malachi so we don’t have hand me downs in that category. I had to take Levi for some bigger shoes this week and his wide-eyed wonderment at all of the options was a really precious parenting moment. Levi wears braces inside of his shoes so we have to be pretty picky to make sure his braces will also fit, but he was so excited about his fancy new shoes!
Our summer has continued to go so incredibly well with lots of family time. We have been doing lots of planned and impromptu play dates with friends here at the house, and Malachi and Levi have spent hours this week in the pool. Malachi keeps beating his record (at his request) and will often spend over 2.5 hours swimming. It is hands down his favorite activity right now.
The FDA recently put out a statement regarding neck rings like the one he uses to swim due to some children somehow slipping through. Malachi is always supervised when he uses his so for now we still feel comfortable with continuing.
It is very hard to have a social life with medically complex children, and it is something I am more than happy to give up in this season that we are in. However, God has been very gracious to us in many ways, bringing such kind and loving people into our world.
At a neurosurgery appointment 5 years ago we ran into another medically complex family and started a conversation. They have two amazing boys, and one of them has many of the same diagnoses as Malachi. We still get together several times a year and text often, and this week they came to our home for a play date.
There is something refreshing about being around other medical mommas. It is inspiring in a way to be able to watch the unique-to-them but similar to us routines and strategies that we use to help provide normalcy for our children. To see others doing life well is always an encouragement to me and challenges me to keep pressing on.
Here is a photo of Malachi and Thatcher from 2016
And one of them together this week!
While we have been thoroughly enjoying summer, this week the ominous wave hit me that we are about to enter our season of medical traveling. Lots of psychological warfare is about to begin as I manage a lot of PTSD from medical facilities and specialists. Anticipatory dread keeps creeping in, keeping me from being as present as I would like to be. I have to keep refocusing and trying hard to enjoy the moment.
Tomorrow is a big day as we head to youth camp with our youth group. We will have 50 at camp this year, and then 6 total at a house off-site with me. This is the largest group we have ever taken to camp and the devil has most definitely been trying to slow us down. Just this weekend two of the three buses we were using to transport kids broke down and we had to scramble to find replacements.
Whenever the devil starts his tricks I can only assume it is because something really great is about to happen at camp that will impact the Kingdom of God in a mighty way. So as stressful as things have been I am really excited to watch Him work.
This is our family vacation each year, and something both of the boys have been giddy about! We require a kitchen, sink, and refrigerator for medical needs when we travel so we rent a house close to camp. Jake stays on site with the teens and a few other chaperones and I travel back and forth each day with the kids and some great friends that come to help with the boys.
When we return next week I will have a few days for laundry and unpacking, then Malachi and I will head to Nashville to meet with his orthopedic and spine surgeons. We will do x-rays and examine his foot positioning to see if it is time for another surgery. Then the next week I will head to Cincinnati with Levi for his week of appointments and surgery.
Malachi is very aware that Levi gets a whole week in Ohio with just mom, so we typically try to give him a special trip with mom of his very own. I will book a hotel room for he and I and we will find something fun to do around the hospital. Last year we did the Rainforest Cafe and Build a Bear.
I was reading through James 4 this week and came across this verse:
“Submit therefore to God. Resist the devil and he will flee from you.”
There are so many truths in this verse, but the one that immediately hit my heart was the very first word: submit.
So many times we try to resist the devil through our own power. But it isn’t our power that overcomes…it is the power of God through us when we submit to Him.
This week as I have wrestled with the doom and gloom that is to come over the next month I have found myself trying to fight those thoughts on my own. And it truthfully just isn’t possible. I can distract myself from them, but the power to remove them from my heart and mind is beyond my capabilities.
So this week I am working on submitting to God. Acknowledging to Him verbally and from deep within my soul that I am weak and apart from Him I can do nothing (John 15:5). I am asking that He replaces my anticipatory grief with His peace.
And I am trusting that He will do just that!
Please be in prayer for our family as we enter a week of focused ministry. And please be in prayer for the weeks of medical traveling that will follow.
May God reveal Himself to you this week!