This week we knocked out some hard things and some fun things. The boys both had appointments with the cerebral palsy clinic so we loaded up to head to the local children’s hospital, which is about an hour away. Levi needed to have bloodwork done without seizure medications in his system so we headed there a bit early to go ahead and get his sodium levels checked for the neurologist.
As you know, Levi has major medical PTSD and I knew the doctor visit alone would be difficult for him, not to mention the blood draw. We have tried every method we can think of to help him through these hard times but every route we attempt has its flaws. This go around I went with the element of surprise and told him about the blood draw about 5 minutes before we arrive, explaining that today ”We are going to have to do hard things, but we CAN DO hard things!” We have been practicing blood draws at home with his doctor’s kit so he knows the routine and terminology.
Thankfully he didn’t put up too much of a fight and put on such a brave face through the tears. And we are still waiting for the sodium levels to come back. After the trip to the lab we headed up to our appointment and we were able to get official orders to get a technician to correct Malachi’s wheelchair. They did look at it for me and definitely agree that it needs to be rebuilt and re-centered. We have an appointment in a week. And Malachi now has a giant green bruise on his forehead from where he hit the floor last week. I wasn’t confident if he had hit his head, but the bruise tells me he most definitely did, poor buddy.
Traveling to appointments with the boys has always been a challenge, and each new season of life with them has introduced more things to work through. When Levi was on oxygen and g-tube 24/7 for those few years I thought we had it rough. But now we have a mobile toddler who is 99% potty trained….but that 1% chance keeps me on my toes. And not all bathrooms were built for wheelchairs, mommas, and toddlers. Not to mention the germ factor with a four year old in a public restroom. I find myself praying a lot of impromptu bathroom prayers these days.
We had therapies this week and other appointments but I feel like those updates can get so monotonous. So instead let’s talk about the fun!
If you are new to the blog, God laid it on my heart a few months ago to start a kids soccer ministry in our community. My goal was 50 kids and we ended up with nearly 100 (ages 4-11). They all practice on Tuesdays and play on Saturday mornings in shifts and coordinating that many little ones has been a challenge, but a wonderfully fun one.
Levi is “playing”- I put that in quotes because he is mostly just wandering around. But he is having a blast doing it so I guess we are good. I have a few pictures a friend snapped for us, as Jake is refereeing one little crew and I am refereeing the other. We are a bit distracted haha.
Malachi is one of the coaches and comes to every game and practice with his coach shirt on. He absolutely loves it.
At the middle of each practice and game for each age group we sit the kids down and do a time of devotion with them. This has been such an affirming thing for me as God has been SO CLEAR each week on exactly what needs to be talked about. My administrative nature wants to plan out the lessons for the whole season, but God has been challenging me to be still and quiet and let Him guide me towards the topic each day.
On Wednesday night Levi started singing a new worship song that I knew I didn’t teach him. I asked him where he learned it and he said ”Ms. Stephanie” (the music director). She had come into his Wednesday night class to teach the kids a song to help lead on Sunday morning. Levi sang the chorus hundreds of times over and over, and then Malachi started joining in. His excitement about singing grew each day and he couldn’t fall and stay asleep last night, just thinking about getting to sing at church.
And they both actually did sing it!! Every time I hear their voices I can’t help but feel like I am witnessing the after ripples of a miracle. I think about the healings in the Bible, and we get to see the actual moment but never get the follow up. I think about the moms and dads of the many people that received healings in the Bible and can’t help but wonder if their faith was kindled by seeing the miracles the way it has re-kindled mine.
My boys still have their struggles. They have their diagnoses and they have their specialists. But they are both living a drastically different life than the ones that the medical professionals predicted in their first few weeks of life. God has been so gracious to our family.
While I am witnessing the goodness of God in my family, I also can’t help but spend time imagining what is still yet to come with my boys.
Psalm 27:13-14 ”I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord.”
Read that again and picture me saying it, because those words could have easily come from my mouth. There are so many moments where I have been on the verge of despair.
Waiting on the Lord is something I used to struggle greatly with. And there are days that I still do. But I have learned to look for His goodness hidden in the details and in the mundane. And I know they are just a fraction of what is yet to come.
I love the words in verse 14 ”Be strong and let your heart take courage…” Isn’t is so true that we have to LET our hearts take courage. It isn’t something that comes naturally, it is something we have to allow. It requires us allowing vulnerability to overtake our guarded nature.
So this week I am focusing on finding contentment while I am waiting on the Lord.
One final laughable moment. I was taking some photos of a sweet Malachi smile when Levi walked behind him and let a poot go. I was able to capture the sequence on camera and if this doesn’t show you his silly little 9 year old heart I don’t know what will.
May God bless each of you this week and my prayer is that you all experience Him this week. A true and legit God encounter that strengthens your faith!