Letting Go

I’ve got 2 babies in school today! Today is Gage’s first day at Shining Stars and Caleb is at day two of preschool at OTC. It’s hard to believe and feels a little surreal. After I dropped them both off and was headed back to the house, I caught myself looking in the rear view mirror to see them in the back seat and of course they weren’t there. It was such a weird feeling driving in an empty car and coming home to an empty house!  Any momma who’s facing “firsts” this year can probably relate to the complicated feelings that come along with letting go.

A friend asked me last night if I was emotional yesterday for Caleb’s first day, and I told her I really wasn’t. I think I got all my emotions out last week when I was living vicariously through everyone else as their kids started school. A lot of my friends and family had little ones headed to kindergarten this year, and my sister’s oldest started his senior year of HIGH SCHOOL!!! It seems like yesterday I was picking him up from daycare and enjoying my nephew’s ornery and funny personality with my college roommates. I totally loved seeing everyone’s first day pics fill up my social media pages, but I was sort of an emotional wreck last week!

But yesterday, Caleb starting school was just exciting and fun. He was so happy to stay and play and barely acknowledged me leaving. Evan was able to hop over and check on him at lunch time and he was in a great mood when he got home. I also have the experience of knowing what an awesome place he’s at because Gage went there when he was 2 years old. Caleb even has one of his same teachers, so his start to preschool was much, much easier than Gage’s was 2 years ago. Those were the times I was sobbing in the car on my way home from dropping him off. And it all ended up being a great experience.

Gage is back for a second year at Shining Stars. The start of last year there was also really rough for me, but this time around is so much better. He has the same classroom teacher and para as last year, which helps a ton. I have a much better idea of what to expect now with a year under our belts. So, letting go is still hard, but much easier when you know your kids are in good hands.

The struggle I’m facing that’s much harder for me now is trying to decide what, if any, therapies we should let go of for Gage. At school, he gets OT, PT and speech each week, but I know the time and resources there are limited and might not be able to meet all of his needs. For example, they won’t work on feeding therapy with him since it’s not education-focused. So, we’ll be starting feeding therapy again next week at MSU. Gage will be seen twice a week to work on lip closure, tolerating textures and drinking skills. MSU’s clinic is also helping us explore AAC (alternative augmentative communication) options. I really believe Gage understands a ton and has so much to say and really do want to help him find the best ways to communicate. So I feel our time there is really important and don’t want to give it up. In September, we’ll also be heading back to Mercy 5 days a week for intensive OT. I hate that Gage has to miss school to be at therapy instead, but I really feel like we see good progress from his intensive sessions, and I want to keep that momentum going.

We’ve also been doing therapy twice a week at Dynamic Strides and Gage has made a ton of progress! He rides a pony, Coco, once a week and does PT once a week. The riding got off to a really rough start, but after 4 weeks, he had his first session with no tears! Now, he doesn’t get upset at all. He’s doing so much better reaching while he’s on the horse, and just sitting on the horse alone works his core. Yesterday, he even rode backwards and sat “over the barrel” on his belly atop Coco. Although, he clearly let us know that he did not want to move while he was in that position.

riding backwards letting go

I am SO PROUD of the hard work Gage has done and how far he’s come in every single aspect, whether it’s therapy, school or just keeping up with his busy life with a smile on his face. But I also look ahead to a hectic schedule with dread, and wonder if I’m we’re trying to do too much, with something (and more often multiple things) scheduled 5 days a week. Three out of 5 days, Gage will need to eat lunch on the go as we go from one thing straight to the next without time to take a break at home in between. Afternoon appointments could mean the only nap Gage gets is a very brief one in his car seat going from point A to point B. Maybe it’s good to push him and get him used to these full days before he starts kindergarten next year? Or maybe we should savor the time we have left to have a little more flexibility?

I realize our lives are not going to slow down anytime soon. While I may not fully embrace that, I’ve accepted it as reality. The harder thing for me to accept constantly facing what seem to be agonizing choices. I hate the feeling of not knowing the right thing to do. How am I supposed to know which therapy is the most beneficial and which one we can take a break from without risking regression? How do I pick and choose how we spend our time and fill our days when the stakes are high?

Perhaps what I really need is to take a deep breath and realize I don’t, and never will, have all the answers. Maybe I don’t want to face the tough choices, but need to accept the uncertainty that comes with parenting, and with life in general. And maybe, just maybe, I need to give myself a break once in a while and know it’s going to be ok, remembering that I’m not the one in control. I might miss an opportunity or make mistakes, but I don’t have enough power to totally screw up the plans God has for Gage’s life. While I cling to things or agonize over choices, perhaps what I really need to let go of is the stress and worry that I’m making the wrong decision. Let go of concerns over what others will think of my choices. Have some faith that we will keep moving forward and find our way as we go. It’s really hard for me to know the best way to do that, but I’m thankful for the amazing grace that covers me as I stumble along.

Rare Occurrence

Sunday morning I woke up in Gage’s bed with my sweet boy snuggled up next to me. This is not a rare occurrence lately. He’ll often wake up in the middle of the night and the quickest way to get him (and myself) back to sleep is to climb into bed with him. He usually just wants to cuddle. What happened next after waking up that morning is less common though, thank God. Gage’s body was twitching in an unnatural way, not like his usual morning stretches. I rolled him over to look in his eyes, and they were gazing upward. He wasn’t totally “out of it” but also wasn’t responding to me repeating his name or making eye contact with me and flashing that sweet smile that he usually does when I get his attention.

I knew something was off, so I carried him into our bedroom and Evan woke up. We both tried to get his attention and watched helplessly as we witnessed our boy go through a seizure. Nothing was violent or life threatening, but the twitches and movements his body was making were definitely out of his control. Evan and I questioned if and when to administer emergency meds. We had them ready but decided not to give them because things were inconsistent and I guess mild? Nothing makes me feel quite as helpless as not knowing the best way to care for my kid.

I wasn’t sure if I’d write about this and share publicly. Gage has had 2 other seizures before and they’ve both become topics of a post. I hope I will never write another one because Gage never has another seizure. But my bigger fear is that the opposite will happen. I’m scared that the frequency will increase and as seizures happen more often, I’ll become desensitized and it won’t seem so out of the ordinary and something I need to write about. Gosh, I hope I’m wrong.

We consulted with Gage’s neurologist’s office and they recommended increasing his anti-seizure meds, so we’re getting that started. After some crankiness that morning and more sleep, Gage was his normal, happy self the rest of the day. Luckily we got to enjoy a nice, relaxing day together and with the rest of the fam. Caleb “helped” me make pancakes for breakfast. The boys and I took a dip in the pool while Evan worked on setting fence posts in the backyard. (Ok, maybe the day wasn’t exactly “relaxing” for the whole fam) Evan grilled and we all enjoyed family dinner together. Even though the day started out so unexpectedly, it was still filled with precious moments and joy, all in the midst of the simplicity of everyday life. I’ve got to keep my focus on those things, rather than letting fear take over.

lou making pancakes
My little chef
gage fencing
Gage observing the progress on the fence.

They say “fear is a liar” and while that may be right, it doesn’t make the fear any less real. It doesn’t make it easier to see your child suffer. It doesn’t mean you stop asking the inevitable questions of “what if?” At the beginning of the year, I decided my word of the year, my focus, should be peace. I think of peace as the opposite of fear and I need that so desperately in my life. I know my peace comes from above and I’m so thankful for it. So many people in our lives keep Gage and his well-being in their prayers, but they do more than that. They also pray for peace for me and Evan and I truly feel it working.

Wingin’ It Wednesday

I try to post updates on a weekly basis, but that doesn’t always happen. This week, Wednesday came and went and it barely crossed my mind that I hadn’t published a new post. And here’s why…we were busy having a fun-filled, spontaneous day with friends! So I thought I’d share a little about our adventures.

The day started with a walk on a Greenways trail that included throwing rocks into the creek and feeding horses! Neither activity was planned, which made them that much more fun. Caleb even conquered his fear and let a horse eat from his hand, but mom wasn’t quick enough to capture a photo of that.

gage sitting
Look at this big boy sitting up all by himself!!! His buddies were too busy throwing rocks to pose for picture with him.
feeding horses
A snack for the horse was the perfect way to use the apple O dropped on the ground.
boys on a log
O prefers photos on his own terms. He climbed up here and said, “Hannah, take my picture.” Louie still could not be convinced.

owen at the creekcaleb at creekgage and horse

In the spirit of authenticity, it’s worth mentioning that at one point during our walk and loading/unloading of the car, each of the three kiddos had a mini meltdown. In spite of that, I think we all had a good time anyway.

 

Although the snacks on our walk (which took place immediately after breakfast) included PB&J crackers, apples, oranges and drinks, of course the boys still worked up an appetite. So it was back to the house for lunch followed by a dip in the pool. Always a good time!

reading books
Look how sweet they look, quietly reading books while Gage finishes up lunch. You would not even know they just had a tug-of-war over a book they both wanted.

O and G in the poolpool time everyone in the pool splash

After our swim, we couldn’t wait to get to our buddy’s house to check out his new birthday gift…a Power Wheels gator! Everyone got to take a spin, including Gage with some added support from the GoTo Seat. I just love when we can find ways for him to truly be included. The kids in his life are so great about making that happen too.

the whole crew
How many kids is too many in one Power Wheels?

gage and E in gator

G and C in gator
Gage loved every minute of the ride. Caleb was overdue for a nap.

When we got back home, the boys graciously went down for naps so I could squeeze in a couple hours of work. Another reminder how lucky I am to work from home. Gage has different plans today, so I’ve got a very squirmy, vocal boy in my lap as I type. That’s pretty great too, though.

We just love our summer days!