Category: Uncategorized

As I shared several weeks ago, Gage has had some unusual seizure activity this summer and we want to try to get to the bottom of what’s going on. We are pursuing an extended EEG that will take place in our home at the end of the month. But the first step to getting that scheduled was doing a standard EEG at the hospital, which was last Thursday afternoon. So, as we often do, Gage and I were going from one appointment to the next and decided to spend time in between running errands in town instead of driving back home. On that day in particular, it’s like people couldn’t stop noticing Gage and were going out of their way to say hi to him and tell me how cute he is. Those interactions always bring a smile to my face.

Our day started with therapy and on the elevator ride up, a sweet older woman told Gage how much she loved his glasses and she thought maybe she needed a blue pair. After therapy, we met Gage’s daddy and grandpa for lunch near the hospital, and some other diners came up to greet Gage and tell him how neat his chair was. We still had a little time to kill after lunch, so we ran to the store for a few things and the cashier checking us out was full of questions about Gage…”Can he talk? What does he have? Good luck to you all.” It gave me a chance to explain the ways Gage does communicate and just how much he understands. As I loaded him back into his car seat when we left I told him that he makes a big impact on people, even strangers that he’s never met before. I really believe that’s true.

As Gage was getting hooked up for the EEG, he would giggle and respond to all the songs I was singing to distract him. The techs were great and worked quickly and were able to put on the electrodes just with the sticky gel and not the extra adhesive, which made removing them so much easier than last time. They both commented on what a great laugh Gage has. Before we went back, I was telling Gage what to expect and told him about the colorful wire ponytail he would get and promised to snap a picture so he could see. With my phone in selfie mode, he checked himself out and shared his killer smile, as usual.

Throughout the test, I was dying to ask all kinds of questions, but knew the response I would get (which I did when I couldn’t resist asking) that the doctor would read the results. I know the techs know something from what they’re looking at and I wish I could discuss things with them as they happen. They hinted that just because we don’t see outward, physical signs of something going on, doesn’t mean there’s not data gathered to tell us more. After the doctor reviewed things, he confirmed there were abnormalities, which we had also learned from and EEG we had about a year and half ago. So we are moving forward with a longer, 72 hour study to see if we can observe anything that’s happening in his sleep. That’s one of my main concerns, because I’m just afraid I’m missing something that’s going on. If we can shed some more light on things, perhaps there will be an important treatment option to try that we haven’t pursued yet.

When we finished at the hospital and headed back out to the car, we were stopped at the door by a woman who greeted Gage and me like she knew us, as if we were old friends. Turns out she was another special needs mom with a child who’s now grown and her experience led her to take notice of kids and moms like us. She expressed interest in Gage and shared encouragement with me. It was yet another interaction with a kind stranger on that particular day. All the credit goes to Gage’s good looks and charm for why people are drawn to him, but it’s nice for me to. Maybe God knew I could use some extra encouragement on that day, at the end of a busy week, especially with the out-of-the-ordinary appointment we had, which sadly feels a little too routine. I know a year ago I wouldn’t have scheduled that visit without Evan coming along with us for support. But it didn’t seem like quite as big of a deal this time around. I’m not sure if that’s because we’ve done it before, or because it seemed more like we were just checking an item off a list to move on to the next step. Even though I downplayed this test, maybe all those strangers were led to reach out to us, not just because Gage is so irresistible, but also as a way to make me feel God’s love. Whether that was their intention or not, in the same way that Gage’s exuberance touches others, those interactions make a big impact on me.

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.

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.

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.

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.

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.

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!

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.

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!

So many challenges come with parenting and a lot of times we might be left feeling like we’re barely scraping by. It can seem like there aren’t enough hours in the day, or at least not enough energy to get through those hours. So many times at the end of the day, once the kids are finally in bed, I just want to collapse and ignore the messy house and dishes piled in the sink. And that’s often exactly what I do.

There’s no question that raising kids is hard, so I think we need to give ourselves a break sometimes and not be our own worst critics. But the thoughts of self-doubt still linger. I’ll be the first to admit that I don’t have things figured out and I’m learning as I go. But I’d like to think that I’m doing my best. Giving all I can to my family to try to do what’s best for them. However, if I really let myself stop and think about it, I start to question, am I? Am I really doing my best? I know it certainly could be done better and I fall short in many ways.

As I’ve gotten older, I’ve cared less and less about what other people think. Time spent worrying about other people’s impression of me and my parenting choices would be a waste. It’s one of the qualities I’ve always admired about Evan—that he doesn’t seem to care what others think. But it’s taken a lot longer for me to get to that point. Even if I’m able to quickly dismiss other’s opinions, I still have to face my own criticism.

I’m constantly questioning if I’m making the right choices for Gage. Or if I’m doing enough to help him. I hate feeling stuck in the middle of two choices without a clear feeling in either direction of what’s right. I also feel like there’s always more I could be doing for him, whether it’s making sure he gets enough calories, or enough activity or the right treatments and medications. And even now as I write this, I feel a hint of guilt that my focus is so much on Gage and start to question if I’m giving Caleb enough of what he needs. Caleb is ornery and gets away with a lot because sometimes I’m consumed with helping Gage, or distracted in other ways. I know Caleb has important needs too and I think finding the balance between taking good care of both my kids will get even trickier as they grow.

I was hesitant to write this because it seems pretty negative, and I don’t really have a positive spin to put on it and neatly wrap it up. But I think after writing some stuff down, I do feel a little better just getting it out there. I know I’ll never be the perfect mom, and I’ll screw up and maybe make some of the wrong choices or fail to do everything I could. But I also know I still have worth in spite of all that. I’ll keep leaning on God to help get me through and have faith that He has a plan for our family—one that’s better than I can even imagine.

Today I sat at my computer working and Caleb ran in for my help turning on his Beat Bow Wow toy. He said, “Help, Mommy. Thank you, Mommy. I love you, Mommy.” and then ran back to his bedroom to show the singing and dancing robot dog to his big brother. I couldn’t help but smile as I watched his cute little diapered butt hurry away and listened to the pitter patter of his bare feet head back down the hall.

Little moments like this make me feel like I’ve won the lottery. Those sweet little snippets bring me so much joy and remind me just how lucky I am to be where I’m at. I can take a deep breath and soak in the fact that I’m getting to do exactly what I want to be doing. It’s also these moments that I need to cling to when “living the dream” isn’t quite so joy-filled. There are plenty of days when I feel stretched thin and like I can’t do a good job of anything, whether it’s housework, work work, or mom work. I have some great kids, but the moments when I can enjoy them playing contently in their room together while I get work done are few and far between.

The summers between my college years, I spent working at a restaurant at the lake. One of the bartenders I worked with would almost always respond to a question about how he was doing with, “Oh, I’m just living the dream, man, living the dream.” I loved that response every single time. Some days, it almost seemed ironic, in the heat of a Missouri summer, on a busy weekend shift, behind the bar of a restaurant with no AC! But his response was consistent. Perhaps he was looking past the customers at the bar posing that question, and instead taking in the phenomenal lake front views with the sun shining on the water and beautiful tree covered bluffs. Life is all about perspective.

When I was working in the office after Gage was born, I longed so badly to be home with him. I get to now, along with his little brother, and I try really hard not to take that for granted. I’m grateful for the time I spent as a mom working outside the home because it gives me perspective I wouldn’t have otherwise. It’s not hard to think back to a few years ago when I was doing all I could to keep my head above water in every single area of my life and remember how badly I wanted to stay home. It was my dream, and it’s been realized. I mean it when I say that. But even with that being true, it doesn’t mean every day is a walk in the park.

I think we have a tendency to think of living the dream as having it made. As if we’ve arrived and things come easily from there on out. What I’m learning is that dreams are different than fairy tales. They are hard work, not just to attain, but to maintain. But when it’s what you truly desire, that work is worth it. It doesn’t mean that you’ll love every single part of it, but realizing that doing the hard stuff is what allows you to have the good stuff can help keep the joy alive.

I also realize that dreams can change with time or circumstances. I didn’t always want to be a stay-at-home mom. Even when I was pregnant with Gage, by no means was my heart completely set on that. But with our situation, it became the desire of my heart. Knowing how dreams evolve makes me anticipate new ones down the road and reinforces the idea that living the dream isn’t about reaching a final destination. It’s an active, changing, awesome, messy, hard, wonderful and joyful experience. I may not know now what shape my dreams will take in the future, or what role I’ll play in trying to do what’s best for my family. But my hope is that when I’m asked the question about how things are going, I’ll be able to consistently say, “oh, I’m just living the dream.”

“Delight yourself in the Lord, and he will give you the desires of your heart.” Psalm 37:4

Yesterday was spent celebrating a wonderful day. Gage turned 4 years old! It’s so hard to believe he’s already that old. Just one more year until kindergarten! Ahh! But I’m trying to just enjoy each day, living in the present and not feel sad about my boy growing up.

We started the day by singing happy birthday…let’s just say Gage didn’t love it. I guess Evan and I need to work on our singing skills. Next up, birthday cake for breakfast! Gage enjoyed some of the frosting, while Caleb dominated most of a whole piece of cake.

 

Although going out to eat is usually last on our list of fun things to do, we decided to attempt a birthday lunch at Lambert’s. Grandma and Grandpa Wingo joined us and the boys did great! More and more, I’m getting used to wheeling Gage’s chair into places and finding a way to make it work. All it took was moving a few chairs at the table to make more space. So he had a safe and comfortable place to sit and was entertained by all the decor, people, and of course, throwed rolls! Caleb loved it too and sampled bites from everyone’s plates.

After lunch, we kept heading south and visited Moonshine Beach at Table Rock Lake. I figured a beach vacation is not in the cards for us this summer, and wanted to give the boys a chance to experience sand and water to see how they’d do. I’m not gonna lie, it was kind of a rough start. We arrived to a huge crowd of people. I had mistakenly assumed a Tuesday wouldn’t be so busy. It was HOT and we had to change into swim gear and lather up in sunscreen. The boys weren’t thrilled about that part and Gage was getting overheated. I tried to get him in the water as quickly as possible, but he wasn’t happy by that point. A kind stranger saw our struggles and offered her tube to let him float on so he could get used to the water. I’m always encouraged by kindness extended to us when we’re out in public. But I hoped he would just need a little time and be ok, and I wanted to try out his birthday gift from Grandma and Grandpa Combs–an Otteroo neck floatie. So, with Evan’s help, we managed to get that on and positioned correctly, but not without Gage’s screams of protest.

There is almost always a moment of regret I feel with each outing like this. Just a hint, but thoughts that creep into my mind like, “This was a terrible idea. We should have just stayed home where it’s easy. Everything is harder and more work for us.” Luckily those brief moments of self-pity are overshadowed by happy memories when things turn around, and a valuable lesson that the extra effort is still worth it.

The further we got into the water, the more Gage started to enjoy himself. He especially loved when he was floating independently, and moved his legs around so much. He could even spin himself in a circle! It was great! Even Caleb, who’s not as big of a fan of water as his big brother, enjoyed bobbing around in his life jacket. When I looked around at the gorgeous scenery of the lake and glanced at each of my boys smiling faces, the trip was totally worth it.

We took a break from the water for a drink and a failed attempt at a family selfie. Luckily, we were that much closer to the car when the rain started. We scooped up our boys and gear as quickly as we could and ran to the car. The boys just giggled as they bounced around with rain drops hitting their faces. Even a sunny day cut short by a storm rolling in made for a fun memory.

We successfully wore the boys out and they both slept for most of the ride home. For Gage, a nap in the car is rare and a big deal…a little birthday gift for mom! It was a wonderful day just enjoying time together as a family.

 

I’ve shared about it over and over again, so it goes without saying that Gage has brought so much joy into my life. But one of my favorite things that Gage has added to my world is new connections. People I would have never met if it weren’t for him. Whether they are therapists, teachers, other special needs moms or online connections, I feel so lucky to still have a growing circle at this point in my life.

I remember several years ago after graduating college and starting my full time job, thinking to myself, “well, this is it.” I felt like I’d already met and made all the friends I ever would. It didn’t make me feel sad or like I was missing out on anything, I just thought that’s how it would be and I was fine with it. Fortunately, I was wrong. But I felt like once I was past the stage of meeting new people in college or getting acquainted with my coworkers, the new connections would fade. I thought I wouldn’t have the same common ground with people I encountered that made bonding natural and easy.

I’ve since realized that’s not the way we’re meant to live. I’m a firm believer that God puts the right people in our lives at the right time. He proves it over and over again. I’ve got to remember not to get too comfortable with those I already know that I’m not open to new connections. Because Gage has introduced me to some pretty great ones! He’s a natural charmer and super likable like his daddy, so it doesn’t take long for people to love him. Their investment in him gives me a chance to connect as well.

And as far as common ground, raising kids with special needs is some of the most conducive to bonding that I’ve ever experienced. I’m so grateful for the other moms I’ve met that can relate to certain challenges and share what they’ve learned, or just listen and understand even if there’s not a solution or advice to offer. I’ve lucked into some pretty great new connections by chance, whether it’s me accidentally parking too close to another mom in the school parking lot or Gage being scheduled with a therapist who goes above and beyond to not only help her patients but help their parents too.

This week I had the pleasure of grabbing lunch with a group of moms with a little more experience in the world of special needs than me. They. Were. Awesome! They shared more about their kids (I even got to meet one of their sweet boys), gave me advice about equipment, doctors, hospitals and treatments and let me check out their wheelchair vans and accessible seating! It was refreshing to get their first-hand accounts and so much more insightful than my unending Google searches.  Like I’ve said many times before, I’m so grateful for the awesome support system that we have and what I’m continuing to learn is that it doesn’t have to be finite. I have a feeling Gage has even more great introductions in store for us.

Earlier this week a good friend reminded me of a simple concept—living in the present. It’s something that I’d been reflecting on recently and her words were a good reinforcement. Lately I’ve been thinking about the early days when Gage was just a tiny baby and there were so many unknowns. Maybe it’s because he’s got a birthday approaching and the years seem to by flying by, or because June is CMV Awareness Month which always reminds me of the feelings I had when first learning about Gage’s diagnosis.  Whatever the reason, baby Gage has been filling my thoughts lately. When he was born, although I had no idea what his future looked like, I hoped for and expected the best. I was just sure that he’d have early challenges, and then Gage would overcome every obstacle he faced in due time and live a normal life like any other child. Of course I was worried as we learned more and more about congenital CMV and how it can affect children, but I was also just caught up in the awesomeness of being a mom and the joy that comes along with a brand new life…a sweet snuggly baby.

I remember when we first learned Gage’s diagnosis how Evan would pour over online research to learn all he could about possible outcomes. I think he was trying to find a way to fix what was wrong. I admired how proactive and invested he was, but I avoided the same kind of research because when I read about the broad spectrum of scenarios, I’d be overcome with grief and fear. Sometimes I’d give in to the temptation late at night when I couldn’t sleep or to pass time in the waiting room at a doctor’s office in an effort to figure out what concerns that specialist might have regarding my son. It always tended to cause a downward spiral. The results from my internet searches didn’t quite match up with my vision of Gage’s triumphant future. Thankfully, though, when I reflect on the beginning of Gage’s life, my memories of happiness and love for my baby far outweigh those of crying myself to sleep or moments of worry and panic.

I remember telling Evan when Gage was an infant that we should just enjoy him the way he was at that very moment without trying to solve or figure out the future because that might be the most “normal” our life ever felt. It’s funny how normal is a relative term. Each step of the way, through each stage of our journey, life has somehow morphed into our version of normal. We hum along in our routine and keep putting one foot in front of the other. Sometimes the next step isn’t quite clear, and sometimes it’s more like a leap of faith. There have been low spots and dark times, and there may be more in store for us. But so far we haven’t stopped moving forward, or gone in the wrong direction.

Taking my friend’s advice to heart, I want to make every effort to soak up the joy and the good things while we have a chance. To live in the present and appreciate all the moments we’re in and what our reality is like today, rather than harboring feelings of regret over the past or fear for the future. In the same way I reflect on Gage’s early days with fond memories of all his baby goodness, someday I’ll probably think back to this age and miss things about it. Like the way he fits so nicely in my lap, or his delight over reading a bedtime story, or how he immediately poses and gets a huge grin on his face just at the sight of my cell phone camera. Gage and his little brother Caleb truly do fill my life with so many good things. I’ve got to remember to be mindful of those and not be too distracted to let them slip by.