Author: Hannah

It’s no secret that I love my Lauren Daigle album, Look Up Child. It plays on repeat in my car. Rescue often brings me to tears. You Say was my anthem and reason for purchasing the CD. Rolling Stones is Caleb’s favorite to sing along to. The whole album is great, but the title track isn’t one that initially stood out to me.

A few months ago, I was at the garage sale fundraiser for a friend’s baby girl, Landry. Her family was raising money for her growing medical bills. Shortly after birth, Landry was diagnosed with Alternating Hemiplegia of Childhood or AHC. She deals with dystonia, paralysis and seizure-like episodes which interrupt her development and her mom’s blissful state of raising a new baby. Instead of days filled with new firsts, typical milestones and just soaking up all the new baby goodness, her family is faced with fear of what might trigger another episode. It seems so unfair.

As far as parents go, Landry is blessed with the best. Her mom Katelyn is a pediatric physical therapist who Gage had the pleasure of working with for intensive sessions. By proxy, I got the pleasure of chatting with and getting to know this amazing woman as she worked with my son for hours at a time. Her experience and knowledge as a PT don’t allow her the luxury of living in denial like I did the first year of Gage’s life. But by the grace of God, her faith carries her through. As she wrestles through each struggle, she finds a way to praise him throughout and stay rooted in eternal truth. She writes and shares in a beautifully authentic way. You can follow their family’s journey and see for yourself at forlandry.com or on Facebook and Instagram.  

A hug in her driveway was the first encounter I had with Katelyn since Gage’s PT session last winter, and my first chance to meet sweet Landry. We caught up and compared notes on some of our unique parenting struggles like trying to choose the right meds, doctors and treatment. We also spoke openly about anger and jealousy we feel and it was so nice to confide in someone who just gets it.

Katelyn told me she hadn’t cried in weeks, for fear that if she started, she wouldn’t be able to stop. She also shared some advice she’d been given on how to stop crying – look up. I realized she was referring to the physical effects of an upward gaze to help stop the flow of tears. But as I heard the words, I couldn’t help but think of the Lauren Daigle song, Look Up Child. The title track that didn’t seem to make much of an impression on me now wouldn’t leave my brain.

The upbeat vibe of the song itself seems to disguise the anguish within some of the lyrics. Maybe that’s the point? Taking a closer listen and look, I relate to the cries of “where are you?” and the talk of darkness, doubt and suffering. All of that is countered by a reminder to look up. Maybe sometimes that’s all we can do. Our best option is to lift our gaze, shift our focus toward God and rest in the truth that he is in control, even when we can’t understand or don’t like the way things are unfolding.

Each year I try to pick one word to focus on, rather than being overwhelmed by a long list of goals. Two years ago, the word was peace. I still find myself longing for it often in the midst of day-to-day life, so it’s still a good reminder. Last year, my word was hope in an effort to maintain a positive perspective when faced with challenges. This year, I haven’t been able to settle on just one word. So I picked two – try and trust.

The word try seems like a natural progression from hope. If I’ll allow myself to hope for the best, it will give me to courage to try new things, no matter how they may turn out. I don’t want to be frozen with fear and indecision, and sometimes, even when I know something might be a failure, I just have to take that first step to try.

Right now, the things we are planning to try include changes to Gage’s diet in hopes of decreasing seizure activity. Given our picky eater who we’re constantly trying to pack pounds onto, I know this won’t be an easy change. In an effort to learn the most about what will and won’t work, our whole family is going to try to cut carbs. That won’t come easily either, given my sweet tooth and Caleb’s love of crackers. But we’re easing in to these changes and at least going to give it a whirl.

Another thing I want to do this year is try and write more. I love having an outlet to share my thoughts and doubts. It really helps me process things instead of suppressing them. I also love sharing success stories and the victories we experience. So many of you out there love our boys and celebrate right along with us and it’s awesome! Lately, though, I’ve struggle to stay consistent in sharing. Sometimes it’s due to life being busy and me not making the time. Other times I just don’t feel like I know what to say. But consistently writing, even if it’s just for me and not something to be shared, is a good habit to strive for.

The reason for the second word this year is I felt like it was necessary—I couldn’t have one without the other. If I’m only focused on my own efforts and accomplishments, I lose sight of the bigger picture. If I’m so fixated on trying—chasing after the illusion of being in control—I neglect to recognize the times when I need to back off or let go. In order to try, I need to trust that there is potential for success, rather than only thinking of the negatives, what ifs or excuses. But sometimes instead of trying, I just need to trust—have faith that things will be alright, even without me influencing how they go.

I feel like the two-part dynamic is this. We have to keep moving forward, taking the next best step, making an effort, trying.  But when we get to the end of our rope, our own abilities are exhausted and we face defeat, we have to remember that it’s not the end. That’s not the whole story. Trying is on us – it’s about what we can and should do. Trusting is what invites God to be involved in the outcomes.

Trust in the Lord with all your heart;
    do not depend on your own understanding.
Seek his will in all you do,
    and he will show you which path to take.

Proverbs 3:5-6

As last week started, I was getting Gage ready Monday morning, watching closely for any ‘episodes’ before I sent him off to school. Lately, he’s been having muscle jerks and facial twitches that are new and different. They aren’t severe, but they are frequent, which is concerning. These episodes prompted a 24 hour EEG that we just finished up…more on that later.

As I monitored Gage’s movements while he got dressed, ate breakfast and brushed his teeth, something occurred to me. I’ve been so freaked out by these small episodes, I hadn’t really thought about the length of time that had passed since his last big one. He’s had a pattern of having bigger seizures every couple weeks. But I realized that his last big seizures were the day he had one in the car after therapy, and two more following it. Looking at the calendar confirmed it had been three weeks since that day…not terribly long, but still a length of time worth appreciating and celebrating in our world.

At school that day I was telling Gage’s school nurse about the time since his last big event. We’ve increased his medicine since then, so I thought maybe it was effectively helping. I took Gage home with me after giving new meds to the nurse and that afternoon we cuddled together on the couch while he napped. He awoke abruptly with stiff muscles and labored breathing. I knew instantly he was in the middle of another big seizure. I carried him to the bathroom and waited for the projectile vomit that I knew was coming.

After he was cleaned up, he returned to a peaceful sleep. It would be tempting to think I jinxed things by acknowledging those seizure free weeks. But I don’t really think it works that way. I won’t pretend I wasn’t pissed that the count started back at zero that afternoon. But I also won’t dismiss the value in acknowledging the good things, even if they are fleeting. Celebrating 3 weeks free from big seizures didn’t cause him to have more seizures. On the other hand, being concerned about the smaller more subtle stuff going on shouldn’t be ignored either. But focusing only on the hard parts of our lives doesn’t make it any easier to get through them.

Gage and I spent the last day in the hospital for an overnight EEG. Yesterday morning got off to a rough start. Gage had 2 significant seizures before we ever made it to the hospital. I was fearful he’d need a dose of meds to stop them, and we wouldn’t even be able to do the EEG. But that wasn’t the case. Gage pulled through and was such a trooper while they hooked up all his leads. He was giggling the whole time and cracking up all the techs and nurses. Even being confined to a bed or his chair in the room couldn’t dull his shine. We fought off boredom with a stash of books and plenty of PBS KIDS, plus a nice long nap in the afternoon. Once the nap was over, some of Gage’s episodes started.

Evan and Caleb came to visit after work, so dad helped time stamp several episodes on the monitor. Caleb stayed busy exploring the hospital room. He informed us “this bathroom is good!” and kept Gage entertained during his visit. Having our whole family together for a bit brought a some normalcy to the sterile room.

This morning Gage’s neurologist came to the room to discuss the findings. The EEG confirmed that his short frequent episodes are in fact seizure activity. While it’s not happy news, it does make it clear there are some changes needed for Gage’s treatment. The doctor and I discussed several different options. I wish choosing what to do next was as clear as the need to make a change.

Regardless, I’m glad we have answers and can figure out a plan to move forward. I hope it will lead to a life free from seizures for my sweet boy. As we take the next steps, we’ll try to find the right balance between celebrating small victories, finding joy in each day and acknowledging the things that are hard or not quite right.

I don’t have a clever title or organized thoughts for this post, but wanted to share some updates about Gage because we’ve had some recent changes. Last week was his parent teacher conference. I’m so proud of how hard my boy works in school and I love that he loves it. He’s got an AMAZING team of people there with him each day and I am incredibly grateful. I got to learn about his favorite things to do in the classroom, like wishing his friends well, or choosing from Mr. Potato Head if he’s going to commit to having watchful eyes or listening ears.

I adore his teacher and her obvious love for each one of her students. Part of her being such an incredible teacher is recognizing Gage’s needs as a whole person, and not just a student in her classroom. We talked about the increase in seizure activity that Gage has had since school started. It has all been at home and not at school, thankfully, but we both suspect that maybe exhausting school days and all the stimulation in the classroom could be contributing factors. Based on what we’ve seen, we’ve decided to shorten Gage’s school days to end at noon each day.

While it feels like the right choice for us, it’s still a hard decision to come to because I know how much Gage loves school. After such a great start to all the adjustments of a new school, riding the bus for the first time, and getting used to a new routine, it seems like a step backwards. But I always said we’d take the lead from him and if he needed a change, he would let us know. God, how I wish his precious little body had better way to communicate that we’ve taken on too much.

Along with a shorter school day, we are taking a hiatus from speech therapy at MSU. Our 5 pm appointment time has always been a challenge and we’ve already missed several days this semester because of seizures in the afternoon or illness. Even on a good day, it’s hard for Gage to give his best when he’s already worn out from a full day by that time. Making the choice to stop that therapy was especially hard, because I feel like we’re not following through with a commitment we made to work with their students. The speech clinic there has been nothing short of amazing and served us so well over the last couple years – it’s thanks to them that Gage even has his communication device. So I hate to put an early end to something I value so much. But the clinic director reminded me on the phone earlier this week that real life doesn’t operate on semesters and they understand.

Earlier I said that Gage’s seizures have all been at home, not school, but that’s not entirely true. Last week on the drive home from swim therapy, he had a seizure while we were in the car. It was one of my fears realized, us being the only two in the vehicle and having to pull over and scramble to get him out of his car seat as cars whizzed by on a busy highway. I was trying to reassure Gage the entire time, like I always do, but there was no comfort whatsoever in my shaky, panicky voice. After things subsided, I pulled off the road to a nearby park where Gage slept in my arms until a second seizure woke him from sleep and he vomited. At home that night he was in Evan’s arms at the dinner table when every muscle in his body became extremely rigid and from his clenched jaw scared cries escaped. I carried him to our bedroom, away from Caleb, and planned to administer rescue meds which Evan quickly delivered to me. Before I could, his body relaxed and he quickly calmed. My prayers that followed were both of thanksgiving that he was ok, and desperate pleas for help.

I don’t write about this experience to worry or depress anyone, or seek sympathy. But the reality is that things get scary sometimes. There are so many people in our lives who love and care deeply about Gage, who I believe truly want to know what’s going on, so I’m willing to share, albeit with some hesitation. Even if it’s easier, I don’t have to gloss over the details, even the painful ones. At the same time, I also believe that speaking about the struggle can be it’s own form of testimony. No, in this moment, we aren’t celebrating a triumph. But our faith is still there, as an underlying foundation. God has not forsaken us, and he is placing people in our lives at exactly the right moment, to help us pull through–texts from friends checking in, powerful words of prayers, truth in scripture shared, and friends on our doorstep at quite literally the perfect time. Through it all, I love the way God loves us and I love the people he uses on earth to make us feel it.

At the end of the week, we have an appointment with Gage’s neurologist. We’re in frequent communication with him, and we’ve recently increased his daily dose of seizure medication. If we don’t see improvements, we’ll make another change or switch. I feel like I’ve been piling up a list of sooooo many things to talk about, and the cynical side of me wonders if I’ll leave the appointment without any answers or a clear direction for next steps. It just seems like that’s the nature of the beast that epilepsy is–it leaves you guessing, which all too often correlates with living in fear. There’s not always a clear answer to questions of why or how. I would love it if you would join me in praying that this appointment will be productive and helpful. I also covet BOLD PRAYERS that Gage will be seizure free. I don’t know what it looks like, but I hope that we can be on a path to that freedom.

The song “Rainbow” by Kacey Musgraves has taken on a very special meaning to me, since the first time I heard it. It was introduced to me by my dear friend Lizette.

Lizette’s been a friend for nearly my whole life. She’s always been a fan of all different types of music, usually has a song memorized the first time she hears it, has a knack for remembering song titles and artists and has a beautiful singing voice. Her musical aptitude is one of the many things I love about her. She’s also a very loyal friend, always ready to have a good time, with a strong sense of who she is and what is important in life. If you’ve had the pleasure of meeting her, you don’t need me to explain how likable she is. She just is.

Earlier this year, Lizette was diagnosed with breast cancer. When she called to share her news, she immediately started offering me comforting words and reassuring me that everything would be ok. She has handled the entire thing with so much grace and courage. But she’s also been genuine and authentic about her struggles and fears, in a way that I love. 

Weeks before the phone call with the bad news, Lizette and I were collaborating with some other friends to plan a long overdue girls weekend. Like I said, she is always down for good time. Four years ago she hosted the group of us in Kansas City and the following spring we kept the tradition going and met up in mid-MO. But time passed and the next thing we knew, it had been three years without anything planned. We chose Springfield as our destination this time around, and booked a ride on the Trolley Bike. Amazingly, the date somehow worked out for everyone and we started getting excited to reunite with the group! All of this was set before any news of Lizette’s diagnosis. Once that happened, things seemed to move so quickly. I’m sure it was much more of a whirlwind for Lizette than anyone, but she was still determined to make it to Springfield–just days after having her port placed and days before her first chemo treatment.

That weekend came and we all had a great time on a gorgeous spring day in downtown Springfield. The way timing of everything worked out, that much needed girls weekend turned into something more–the chance to rally around our friend at a critical time, but also just to spend quality time together having so much fun! Per Lizette’s request, after dinner we made our way to a karaoke bar. As you might imagine, she’s a natural on the stage and graced us with more than one delightful song. We danced, laughed, drank and made some unforgettable memories.

The night ended with a good old fashioned sleep over. Another friend and I were back at the house where we stayed before the rest of the group arrived home. When they walked in the door, one was dabbing tears from her eyes. I was eager to get filled in on what I missed, assuming something hysterical happened during the ride home and everyone laughed so hard they cried. It wouldn’t have been the first instance of that that day. As it turns out, the tears weren’t the hysterical kind, but the emotional kind, invoked by Lizette singing a song called “Rainbow.” I was bummed to not have witnessed this special moment firsthand, and I had to know more about this song I’d never heard.

Back at home the next day, I smiled to myself scrolling through all the goofy pictures from our shenanigans, then googled this mysterious song that prompted such a somber moment in an otherwise wild, carefree day. Tears streamed down my cheeks as I watched the You Tube video. Since that weekend, I can’t hear that song without thinking of Lizette, often getting emotional all over again.

A couple weeks ago, Lizette’s family and our hometown hosted a benefit to help her pay for medical expenses. Evan, the boys and I loaded up Friday afternoon a hit the road to Tipton as soon as we could get away. Our drive started in the pouring rain, and an exhausted kindergartner, who’s notorious for being cranky on long car rides, was having an especially rough time on this particular trip. I’m so grateful that Evan willingly drives each time. As usual, I climbed to the back seat and did my best to console a very upset Gage. As I sat on the floorboard, negative thoughts consumed me. Why is it always like this? Will this ever get easier? Why don’t I know how to comfort him? And then, I caught a glimpse of just the hint of color against the gray sky. As we drove along the twisting, turning road, the rainbow stayed in our view for a long time, the colors becoming brighter and more vibrant. In that moment, the negativity slowly seemed to fade away. Gage’s screams faded as well. It was all going to be alright.

Sure enough, we arrived safely in Tipton and got to the venue for Lizette’s benefit before they finished setting up. Since we were in town for the weekend, we took advantage of some family activities that we normally miss out on being a few hours away. Saturday before the benefit, my nieces were singing at a local festival. We got there in time to hear the first song, then enjoyed a car show, bouncy house and turkey legs before the next performance. My niece’s solo was the very last one, so while we waited to hear her, we listened to all the other sixth grade soloists. I had Gage propped on my lap on the bleachers and didn’t even realize he’d fallen asleep until my sister pointed out that he was snoozing. I did my best to make him comfortable while he rested, and found myself overcome with fear.

Lately, Gage’s seizures are almost always when he’s waking up out of sleep. Just days before the festival, he had a really intense seizure waking up from an after school nap. As I held my sleeping boy on the bleachers, I couldn’t seem to keep myself from thinking, what if he has a seizure here? What would I do? What can I do right now to keep it from happening? I just held him there in my lap with an uneasy feeling as I listened to the middle schoolers sing their hearts out.

Then, an adorable, spunky looking girl I didn’t know made her way onto the stage. She was a least a head shorter than any of her peers waiting beside the stage for their turns to sing. She seemed to bounce, not walk, up to the microphone and introduced herself. Then she said “I’m going to sing Rainbow by Kacey Musgraves.” I turned to my sister with panic in my voice and said “oh my gosh, I’m going to cry.” Those were the only words I got out before she sang the first line and silent sobs overtook me. I did my best to duck my head behind Gage in my lap, trying not to draw attention away from this tiny star on stage with my blubbering. It took a few verses, but I eventually pulled it together before the song ended. When I had recovered, my sister asked if she could know more about what was going on, so I shared with her why that song had a special meaning and always made me think of Lizette.

It wasn’t until later that week (after a beautiful solo by my niece and a wildly successful benefit for Lizette, by the way) that I took time to reflect more on my mini meltdown at the Ham and Turkey Festival. Yes, that song always makes me cry, but I feel like the song was only part of the story. There was more going on with me, and maybe more going on with rainbows.

Rainbows–a physical reminder of God’s promises to us. We’re not promised a life free from storms, but God never abandons us, even in the midst of them. We don’t have to stay stuck in the storms. It’s tempting to be so consumed with fear that we fail to realize when it stops raining. Rather than sitting with my sleeping child in my lap, worrying about the what ifs, or crammed on a floorboard, focused on the bad, hard parts of a long road trip, perhaps I need to shift my focus to the beauty in the sky outside my window.

This morning as I got Caleb ready for school in a dark room (he complains if I turn on the light too quickly after he wakes up) it occurred to me that colors can’t be distinguished in the absence of light. I flipped through the shirts in his closet, not quite sure if the one I pulled off the hanger was red or blue.  I chose a pair of shorts that I hoped were gray so he wouldn’t be too terribly mismatched.

In the middle of the dark, I want to maintain enough perspective to know, even if I can’t see, that I’m surrounded by colors. They’ll show up when I let the light in. God’s light–shining through amazing vessels in my life–Caleb’s cute little quirks first thing in the morning, Gage snuggled comfortably enough to fall asleep in my lap, Lizette’s spirit that won’t be dimmed even in the midst of a storm. I need to stay focused on the truth in God’s promises and really believe that it will all be alright.

If you want to learn more about Lizette’s journey, she shares updates here. Last Wednesday she had her double mastectomy. She is now recovering at home with her husband and daughter.

“Rainbow”

Thanks to my sister Sarah for writing this wonderful piece. When she told me about her “army” over the weekend, I couldn’t help but think of everyone in mine, including each one of you! Whether you’re a fellow special needs mom, a life long friend, a prayer warrior for Gage and our family, or one of his many awesome therapists, teachers, etc., please know how grateful I am to have you in our lives, and in my army. You are the hands and feet of Jesus…THANK YOU!

Have you ever listened to a song over and over and the lyrics just hit you at your core? But then one day you hear the exact same song and another line stands out in a way you never noticed before…?

The song for me today is Rescue by Lauren Daigle. I’ve been listening to it for months now. There are lines I’ve felt are speaking directly to me and I needed to hear them. (Plus, let’s be honest, Lauren Daigle is an AMAZING artist and her songs are a gift to the ears!)

And then there was last week. Exact same song. Listened to it probably a hundred times. Yet that day, it seemed like the only line I could hear was:

“I will send out an army to find you
In the middle of the darkest night
It’s true, I will rescue you”

Army. An ARMY. God will send an army. For me. 

And instantly the faces start flashing through my mind. The army He has sent.

The past several years have been tough for me. Some in ways certain people know. Others still kept just between God and I, for now. He’s been working in my life in ways I never imagined. Often through the incredible people He places in my path. I know I wouldn’t have picked the circumstances that have brought me to where I am today. Without them, would I have let my guard down to really lean on those closest to me and let them help pick me back up? Without these circumstances, would I have even met some of the truly wonderful human beings who’ve filled my life with more love and joy than I knew possible? Without this time of brokenness, would I have been open to the relationships which blessed me so much and helped me heal? Would I even recognize and appreciate this ARMY?

I know I am never promised a life free of struggles from here on out. I also know I am not hidden from God and there has never been a moment I was forgotten. He sent an army to help rescue me and I am so grateful. I’ve been trying to share this epiphany (I haven’t even told each one personally yet and need to keep at it!). As you may have guessed, Hannah’s is one of the faces that flashed before me when I considered the army He sent to find me. My sweet sister suggested this might be a good blog post, so here you go.

How about you? Have you thanked those in the army He used to help find you? Maybe you’re still in the “middle of the darkest night,” or “middle of the hardest fight.” Remember He hears you. Even the “whisper underneath your breath.” He will send out an army to find you. He will rescue you. It’s true.

Thank you, God, for the struggle. For the blessing. For the army. And thank you, ARMY (you know who you are), for pointing me back to Him.

Rescue by Lauren Daigle

You are not hidden
There’s never been a moment
You were forgotten
You are not hopeless
Though you have been broken
Your innocence stolen

I hear you whisper underneath your breath
I hear your SOS
Your SOS

I will send out an army
To find you in the middle of the darkest night
It’s true, I will rescue you

There is no distance
That cannot be covered
Over and over
You’re not defenseless
I’ll be your shelter
I’ll be your armor

I hear you whisper underneath your breath
I hear your SOS, your SOS

I will send out an army
To find You in the middle of the darkest night
It’s true, I will rescue you
I will never stop marching
To reach you in the middle of the hardest fight
It’s true, I will rescue you

I hear the whisper underneath your breath
I hear you whisper you have nothing left

I will send out an army

To find you in the middle of the darkest night
It’s true, I will rescue you
I will never stop marching
To reach you in the middle of the hardest fight
It’s true, I will rescue you

Oh, I will rescue you

Several weeks ago, a friend brought her kids over to play. I hadn’t seen them in waaaayyy too long, and their sweet mama told them they were welcome to ask any questions they wanted to about Gage. The 4 year old girl wanted to know if he could talk. I explained that he communicates in other ways, and said maybe after we were done playing outside he could show her his “talker.” Then the conversation moved to questions about Gage and Caleb’s dad. Since Evan wasn’t home from work yet, they were trying to figure out everyone’s roles and had to clarify if the bearded man in photos was the boys’ dad or mine. I laughed and explained that he was my husband, but Gage and Caleb’s dad. That seemed to end the Q&A session and the kids switched their attention to the real reason they were there—to play! I thought it was sweet that my friend didn’t try to hush their curious minds, but wanted them to really understand Gage’s differences. And not just according to her explanation, but by asking their own questions.

The kids got to swing, climb and bounce in the backyard before we moved inside to make tacos for dinner. As we were coming in, I was struggling to roll Gage’s chair wheels over the threshold of the sliding patio door. My friend’s 7 year old son patiently waited for us to clumsily make our way inside, then looked at me and asked, “Is it hard for his mom?” Another question caught me off guard in the middle of the task, and confused me a bit. I told him that I was Gage’s mom, thinking I hadn’t clearly explained all the family roles earlier. And then he looked me right in the eye and said, “I know. Is it hard?” That’s when I knew there was no confusion on his part at all. The compassion and empathy of a 7 year old standing in my living room hit me right in the gut. His mom wasn’t there listening or prompting questions. He just recognized my struggle and was brave enough to speak it. I told him that yes, sometimes it is hard and thanked him for asking me that.

We wrapped up the night with some tasty tacos before they headed home. On their way out the door, I told my friend about her son’s question while he climbed into the car and I could sense the pride on her face. There’s something so refreshing about kids’ perspectives. Sometimes questions for kids about Gage’s differences can be hard. I feel like my response is always a little different, depending on the mood I’m in. But I’m always glad when they show interest in him. Questions directed at me aren’t nearly as common, especially from little ones. That in itself was refreshing. This sweet boy wasn’t feeling sorry for me, or looking at me with pity. But somehow the simple fact that he recognized our challenges, on whatever level, made me feel seen and loved.

I try to maintain a positive attitude and share encouragement, rather than focusing on the negative. But neglecting to recognize when things are hard doesn’t make them any easier. Sharing our struggles with others may be the only way to make it through. My hope is that people, whether they’re kids or adults, can understand that even though something is hard doesn’t mean it’s not good. Our lives are filled with so many good things.

¹ Let all that I am praise the Lord;
    with my whole heart, I will praise his holy name.
² Let all that I am praise the Lord;
    may I never forget the good things he does for me.
³ He forgives all my sins
    and heals all my diseases.
⁴ He redeems me from death
    and crowns me with love and tender mercies.
⁵ He fills my life with good things.
    My youth is renewed like the eagle’s!

Psalm 103 : 1-5

Week one of school is in the books for both Gage and Caleb. I’ve been so pleasantly surprised with how smooth our first weeks have gone! Last week, I was thinking about all the meetings or trips I made to Gage’s school, before class even started. We delivered medication, equipment, food, drinks and more, all just to meet his basic needs throughout his school day. Separate meetings were scheduled to share instructions on how Gage’s talker and gait trainer worked. It felt like a lot, but it was worth it. 

I have such a sense of trust in the people who help care for Gage during his time at school. His teacher is uh-ma-zing, which I knew from the first time I met her. But seeing her demonstrate it in the first few days in the classroom has been wonderful. There were a few things in Gage’s IEP that was drafted last spring that I wished were different, but thought I should wait and see how the first quarter in the new school goes before demanding changes. Long before I ever mentioned my thoughts, Gage’s teacher picked up on what will work best for him and has already started including him with his kindergarten peers for things like music and art class. She’s a step ahead of me, but we’re also seeing completely eye to eye and on the same page. It’s such a great feeling.

In Gage’s classroom, there are three awesome paras, helping all the kids get through the day. I feel like they, along with Gage’s sweet, sweet classmates, shower him with attention all day and I know he loves it. One thing I love is that the para who spends the most time with him shares lots of updates with me throughout each day. She greets him as he gets off the bus each morning and has him loaded up and ready to go when I pick him up. I get lots of pictures and even some videos that all make it abundantly clear that Gage is having a great time during his school days.

The school nurse is awesome and so proactive to make sure Gage gets his meds, even brainstorming and troubleshooting after day one to come up with the best way that works for everyone. Yesterday she told me that they’ve got their routine down now, and she even plays music for Gage while he takes his dose. Finding a way to make taking medicine fun is not an easy task and I’m thrilled that she cares enough to try and do just that.

I told Evan one night this week, that even though I know the numerous people who are involved in Gage’s care each day are there for all the kids, they make it feel like they’re there just for Gage. That’s an incredible accomplishment to me and I can’t help getting emotional when I think about it and how grateful I am for it. Truly, the first week of school has been better than I could have hoped for or imagined. I’m looking forward to everything that’s still to come. I know that as Gage adjusts, learns and grows while he’s at school, I will too. As we need to make changes and continually figure out what works best, I hope I’ll always feel as thankful for “Team Gage” as I do today.

“I pray that you, being rooted and established in love, ¹⁸ may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, ¹⁹ and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
²⁰ Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, ²¹ to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.”

Ephesians 3:17-21

What an incredible summer we’ve had. As it winds down, I can’t help but reflect on all of our great times. We traveled, swam, grilled, relaxed, got a little work done, and did plenty of playing. It was wonderful. We really soaked up every bit of summer that we possibly could. Even last week when Gage had Meet the Teacher, we went straight there from the swimming pool! Gage was barefoot. I assured his new teacher we’d remember shoes on the first day of school.

After visiting Gage’s school Friday afternoon, we returned Monday morning to meet the paras in his classroom and deliver medications to the school nurse. A full day of kindergarten (versus 3 hour sessions in pre-K) means Gage will need to eat meals and take meds at school. Since it’s the first time that’s been a requirement, I wanted to do as much as possible to help prepare the staff assisting Gage with those things.

Tuesday was the first day of school and Gage’s first bus ride! He was such a good sport loading onto the bus. I followed behind to take a few more things to his classroom and was thrilled to see he still had a smile on his face when he arrived at school. I was lucky enough to meet several of Gage’s sweet classmates as they finished up their breakfast and started morning activities.

The hours seemed to fly by at home and before I knew it, it was time to go pick Gage up and head to hippotherapy. I got a pretty good report from his teachers, although getting him to take meds proved to be a little tricky on day one. Hopefully as he gets to know the school staff better, it will get easier. If not, I’m sure we’ll figure something out. The first day exhaustion set in on the car ride to therapy and I was a worried he’d be way too worn out for a horse ride. But a short power nap in the car was just what he needed to tackle his ride on Johnny Cash. His awesome therapist even sewed him a new bib to match Johnny’s blanket – black with red and orange flames!

I’m so happy that Gage had a great first day. I’m even happier that he’s got awesome staff, teachers, therapists, etc. willing to meet and make plans ahead of time before the first day even started. It helps put my mind at ease. After Gage loaded the bus, I text another mom friend who had encouraged me to try it, reporting that he did great…no tears! She text back and asked, “oh good, you didn’t cry?” I laughed, because I meant Gage. There were tears on my part. I replied with that confession and of course she could relate and was in the same boat during her daughter’s first bus ride. As I drove to school after the bus left, I was weepy, just like I was driving home after Meet the Teacher and our other school meeting. In the midst of those tears, I felt like God was putting on my heart to find joy in this exciting time. It’s ok to feel sad and recognize what’s hard in your life, but if you don’t also let yourself feel joyful during an exciting new beginning, what hope is there for the really tough times? While I willingly let the tears flow and vent to my husband about the extra challenges we face starting at a new school, I want to avoid the trap of only seeing the negative. I need to take a cue from Gage and share in his excitement.

Last spring when we were making decisions about this school year, I was so reluctant. Gage has a July birthday, making him one of the youngest in his class. I had all but decided for sure to keep him home for a year to focus on therapy and other goals, with plans to wait and start school after he turned 6. Then I realized that choice would be more about me not being ready to send him, rather than him not being ready to go. If we’ve learned anything from Gage’s two years in pre-K, it’s that Gage LOVES school. He loves seeing and interacting with friends and I’m convinced he understands and absorbs nearly everything going on around him.

I try to remember to take the lead from Gage. He learns and makes strides on his own timeline. As we start this school year, I’m sure we’ll have to make changes and adjustments, while patiently learning and figuring out what works best for Gage. But I’m so excited to see what kindergarten has in store for him!

^” Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

Joshua 1:9