Category: Uncategorized

We’ve been in a season lately that isn’t the easiest. Gage had an extended EEG a few weeks ago that showed us he’s having A LOT of seizure activity all the time. We’ve tried several meds without getting the control we hope for. Another treatment option we’ve explored and are now pursuing is a vagus nerve stimulator, or VNS Therapy—surgical placement of a device that sends signals to the vagus nerve, interrupting the seizure activity in the brain. It all sounds like sci-fi to me and I have a hard time wrapping my head around it. Not just the mechanisms of how it works, but the idea that my tiny boy will undergo surgery, with incisions to heal from, lasting scars, and a foreign object placed under his skin.

It can all feel like a lot and be overwhelming. I’ve been focusing on the logistics and details to try and keep it together—getting as many questions answered as possible, picking the right date on the calendar to best fit schedules, considering lodging options and commutes to Kansas City, and figuring out plans for Caleb. I’ve also cried a lot. So, you know, balance.

The thing I’ve been amazed by, throughout my attempts to process and deal with all this, is the way God keeps sprinkling in reminders of his unfailing love—fulfilling desires of my heart that I hadn’t even acknowledged were there. During our hospital stay for the EEG, I flagged an episode of Gage’s spontaneous laughter, not knowing if it might have a neurological cause. The doctors confirmed it was not a seizure and that news was such a relief! It was coupled with the fact that Gage was averaging 20 seizures per hour, which is obviously not good news. But visiting my friend after the EEG and sharing that positive note about his laughter, it hit me what an answered prayer it was. A prayer I hadn’t even verbalized, but a precious gift nonetheless.

In the week between the EEG and our consult with the neurosurgeon who will place the device, I connected with another parent whose child has used this treatment for 7 years. When I was given a stranger’s phone number, I wasn’t even sure she’d return my text. The moment she did, with a lengthy and positive recap of their experience, I was overwhelmed with gratitude. I just kept repeating “thank you Jesus” out loud, because her response, with practical details and authentic, down-to-earth perspective, was exactly what I was hoping for. I realized that part of me was afraid to ask for advice or learn about others’ experiences in fear that it would be negative and another source of doubt. I know there are no guarantees.

I want to be hopeful about this new treatment, and also be realistic with my expectations. Deep down, I want the courage to expect the best possible outcomes and drastic improvements for Gage. I want to know that what he has to go through will be worth it in the end. High stakes decisions like this have always been tough for me, especially when the burden of the choice doesn’t fall to me, but on my child.

Through my doubts and fears, God just keeps showing up. I’ve reveled in the phone calls from friends and family, a gentle spirit, listening ear and unsolicited prayers from Gage’s caregiver, support from coworkers, and more. Perspective on how He weaves things together, for our good, might be easily missed and I’m so grateful for the times He puts it right in front of my face and takes my breath away.

Yesterday I hopped in my car to pick up Caleb from school. The Journey song on the radio immediately made me think of a friend, so I picked up the phone. We laughed about all the songs that could remind us of each other because of all our crazy college adventures. She told me a little about her work and I filled her in on what’s coming up with Gage. As we talked, we realized that she’s flying into Kansas City on the same day of Gage’s surgery. This friend, who lives over 1,200 miles away, assured me that she’ll find a way to see me and give me a hug. That may seem like a small thing, a lucky coincidence, but if you’ve ever received a hug from this woman, you know it’s a gift from God. Another desire of my heart He is fulfilling, just because He can.

Lately it seems like the appointments just keep coming. It could be for Gage’s botox, hearing check, neurologist visit, nutritionist, EEG, or any number of other things. Sprinkle in a few of my own doctor visits and a busy season at work, and it can feel overwhelming.

For several months, I’ve been needing to take Gage to the eye doctor and I just keep putting it off. His former doctor is no longer in Springfield and once he left and our visit was cancelled I never followed through with rescheduling. I keep telling myself that I will once things slow down a little and there are less things filling up our schedule. But that day never seems to come.

We hear a lot about the light at the end of the tunnel. Heck, I’ve talked a lot about it. But it can be hard to take comfort in the idea that we’re so close, we just need to keep going and it will be better and easier soon. Because sometimes that’s not reality. When we get through an especially busy season of appointments and follow up visits, and I look to my calendar, hopeful to see week after week of empty days, that’s not what I find.

Instead of focusing on the finish, the promise of a burden lifted, the proverbial light at the end of the tunnel, I think I’d be better served to look for the light IN the tunnel. That flicker of hope and fighting spirit even when things seem tough or overwhelming. The reminders that even if you’re in a funk, you don’t always have to stay there. When I try, I can see and feel the constant presence of that light in the tunnel, in the midst of everything else. It comes in the form of kind offers of help from good friends, encouraging words, verses, or song lyrics, and reminders that I’m not alone in my struggles.

Ultimately, I seek comfort, joy and peace through my faith in Jesus. Instead of waiting for one day—for the empty calendar I’ll likely never have or for things to just feel a little easier—I’ll try to focus on all the good stuff that’s present even in the middle of the difficulty or chaos. I’ll keep looking for the light in the tunnel.

Two weeks have now passed since my granny peacefully left her life here on earth and was welcomed home to heaven. Many times since then I’ve laid awake in the middle of the night, reflecting on all the memories of her and who she was and the legacy she leaves. So tonight (actually, this morning) I’m putting some down in writing. 

Something I’ve always known is how special Granny always made me feel. I share her middle name and have memories from an early age of discussing that common ground with her. I’ll admit that as a child, I wasn’t always thrilled with my middle name, thinking it wasn’t as pretty or feminine as that of my sisters or friends. (Granny told me once about all the mail she’d received over the years with Louise misspelled as Louis). But when I asked my mom why she picked it and she explained that it was Grandma Margie’s middle name, it became a source of pride. 

Another example of Granny’s gift for making me feel special was through mail she sent. Year after year, birthday cards showed up, not just for me but for Evan and the boys too. I cherish her thoughtfulness on each birthday, but some of my favorite mailings were those that came “just because.” When I moved into a new house, she would send me Bed, Bed and Beyond coupons in case there were any items I needed to purchase, “even if it’s just a toilet paper holder.” In recent years, she mailed me a card with a poem clipped out of the paper titled “Heaven’s Very Special Child.” She thought of me and Gage when she read it and took the time to send it to me, along with the sweetest note. I can’t fully express how much it meant to me then and still does now. Just like she loved all of her great grandkids, Granny loved Gage so perfectly, with so much pride and joy. I somehow knew, even without her saying it, she saw our struggles and understood the hard that comes with it, but she never once made me feel pitied, she was only encouraging. 

I’ve always known how special granny made me feel, but she was so good at it, I’m just now understanding that’s how she was with everyone. Near the end of her life and in the weeks since, so many examples have come up of the amazing way she loved—like her honest opinion, yet kind words about my cousin’s tattoo in a Facebook comment. Granny was never one to hide her true feelings, but she saw and accepted people just as they are. She did it with grace and kindness in a way unique to her. But now that I think about it, she was a living example of how Jesus loves. How lucky am I to experience that first hand? 

A few years ago during a visit to Granny’s house, she had clean sheets that hadn’t yet been put back on the bed and asked for my help. She told me precisely how to place, fold and tuck each one, just the way she liked them. I’ve always admired people who know what they like and what they don’t and can articulate it. Our work together making her bed ended with one of her amazing hugs. Even in that moment, standing in her bedroom wrapped up in her arms, I knew I would always cherish that memory made with her. 

It struck me recently how hard it must have been for Granny to not be able to express what she likes and what she doesn’t while she’s spent the last year in a nursing home. In early 2020, a stroke robbed much of her ability to communicate. I know it was equally frustrating for her kids trying to navigate her care, and especially tough having to be physically separated from her for a good portion of the last year. Her nine kids quite literally rallied around her, even with a pane of glass between them. 

This family rallying together is nothing new though. It was a beautiful thing to witness as Granny bravely battled breast cancer over the last several years. Her kids and their spouses truly shared the load to support her, taking turns driving her to out-of-town appointments on a frequent basis, often followed by a trip to Target and sometimes even a stop at Coldstone to celebrate a final chemo or radiation treatment with ice cream! In the same way, Granny’s nine kids have been rallying around her and supporting her since she lost her husband, my Grandpa Frankie, to his own battle with cancer over 20 years ago. 

That kind of love and support doesn’t just happen. Granny’s kids were following her example and that’s how I know her love and her legacy will live on and on.

This weekend, we celebrated the birthday of my favorite human. Evan’s special day warrants a well-deserved shout out. He is the most amazing dad to Gage and Caleb and I’m so lucky to call him my husband. I love the way he loves our family and am so grateful for a partner like him.

Among Evan’s many great qualities are his ability to keep us laughing, not take himself too seriously, understand what things are truly important, and think about what’s best for our family long term. We balance each other out in many ways because we’re different. It’s easy to get so caught up in caring for our littles and the daily grind, that we’re distracted from taking time for just us. But when we do get those rare opportunities to connect, like a day date/birthday lunch, I’m reminded that I don’t just love him, I still really like him too.

Sometimes I question why people express their gratitude and appreciation for someone online, and not just face-to-face with a person they live with. But I share so much here on this blog. It’s been a place for me to express my feelings, work through the messy thoughts in my head, give updates on Gage’s progress and setbacks, and share funny stories about Caleb too. During Evan’s birthday month, I’m taking advantage of this space to brag on him as well.

You see, as a special needs dad, I don’t think he’s afforded all the same luxury that I am as Gage’s mom. I’ve forged friendships in therapy waiting rooms and school parking lots. Other moms have been such a lifeline to me and it’s so great to be around others who just get it. I’m not sure Evan could describe finding that same common ground with his acquaintances. Regardless, he and I share the common ground of feeling an overwhelming love for both our boys, and all that it entails. I know that without even putting things into words, Evan gets it. Time and time again, he’s my refuge, my safe place. On his birthday, and every day, I love him for that.

A few months ago a memory popped up on Facebook from my pregnancy with Gage. Evan was holding the picture from our 20 week ultrasound, smiling proudly. Both he and that tiny baby in the black and white photo were giving a thumbs up. Seeing the memory immediately made me smile, feeling happy and nostalgic. Those feelings were followed by a nagging hint of melancholy.

I had captioned that post “thumbs up for a healthy baby boy!” Most of my pregnancy involved nothing but feelings of happiness and excitement as we anticipated becoming parents. The ultrasound that day was so thorough. Evan and I giggled together as we learned we were having a boy. The tech walked us through every detail, all the measurements, checked all the things. There was never any suspicion that things weren’t going along just as they should be.

That nagging sadness is the result of an unanswered question… at what point during my pregnancy did a virus I’d never heard of change the course of my child’s life? Not only was I completely unaware of CMV during my pregnancy, I don’t recall ever even feeling sick at any point during those 9 months, aside from early morning nausea during the first trimester.

An ultrasound after birth, this one of Gage’s brain, revealed several markings indicating damage and perhaps suggesting the infection was onset early in my pregnancy. But it all still seems more mysterious than conclusive. I joke with myself that the last time Gage ever gave a thumbs up may have been at 20 weeks gestation. Since birth, he has defaulted to keeping his hands held in tight fists with his thumbs tucked inside.

Towards the end of my pregnancy, the baby was measuring a bit small, but the doctor didn’t seem overly concerned. He mentioned doing a second, late term ultrasound, but we didn’t end up having it. I often think back and wonder if that second ultrasound would have made a difference. Would we have known prior to delivery that something was off? That my tiny baby was especially tiny? That his head was extra small? Would it have indicated any brain damage or other problems? Would it have changed our actions or plans for delivery at all?

Wondering about those things leads to the next loaded question. Do I wish we would have known sooner? After years to reflect on that, I think I can finally say with some certainty that the answer is no. I’m not sure knowing earlier could have yielded any different outcomes. What it likely would have done is caused me to worry more and feel completely stressed out at the end of my pregnancy, instead of nervously excited as my due date approached.

In retrospect, I wouldn’t change those last few weeks of ignorant bliss and anticipation. Who’s to say if more time to research, worry and try to prepare for something that nothing can prepare you for would have made any difference. What I know for sure is that I’ve been absolutely crazy about my sweet boy at every point along the way, whether I was seeing him for the first time in a grainy ultrasound image, snuggling him to my chest shortly after birth, and to this day as he lays beside me on a swinging hammock, giggling while I type these words.

Knowing about Gage’s unique challenges sooner or later seems far less important than knowing how to love the way he taught me… fully and completely, just as he is. No matter what, our boy has always been deserving of a huge thumbs up!

Three years ago today, I shared my blog for the first time. Back then, I couldn’t have imagined all the ways it would help me. I remember when I started blogging, I made myself a promise that I would always try to be positive and uplifting without sugar coating things. That philosophy has ebbed and flowed through the years, with some updates just being raw and honest, not necessarily finding the silver lining by the time I wrapped up a post.

Today’s Facebook memory of the Wingin’ It anniversary, and thus the original philosophy of sharing positivity, was a welcome reminder. For the last several weeks, I feel like our family has been living the good life! As thrilling as that reality was, I was hesitant to overshare about it, knowing many others were struggling just to keep their heads above water in the midst of this crisis. But in the same way that I don’t want to sugar coat things, I also don’t want to neglect to share the good for fear that it will come off as bragging. Life is filled with ups and downs, sometimes all in the same week, day or hour. We may not be able to sync up our best times and good news with everyone else’s, but that doesn’t mean it’s not worth sharing. So here goes…

When he realized stay-at-home orders were imminent, Evan suggested that we relocate to the lake. If we were required to shelter in place, it might as well be our happy place! We’re so incredibly fortunate that my parents have a cabin and were gracious enough to let us stay there. In addition to a free place to stay, the thing that allowed us to take this spontaneous and bizarre vacation was a break in Gage’s therapies. Even as I agreed to keep our appointments when the choice was presented to me, I felt so conflicted about it. I breathed a huge sigh of relief when the decision was made for me and the clinic shut their doors. This hiatus in our normal routine freed up our schedule and gave us the flexibility to be somewhere different.

So we cleaned the house, loaded down the car, and headed north. In less than two hours, we were transformed into a laid back state of mind. It was such a strange way to feel in the early days of a pandemic, but every member of our family seemed to unwind a bit. I was overjoyed to have less commitments and my partner present to share the load of everyday life. Evan conducted Zoom meetings from the dock and looked forward to the potential of catching a limit of crappie every day. Caleb was wound up about everything in a new environment. And for Gage, something magical happened. Having as much time as he need to rest and relax and tweaking some of his medications led to a decline in seizure activity. I started to notice more of his personality and spunk peeking through.

Our days at the lake included meals together as a family, throwing rocks in the lake, trips to the “beach,” boat rides, puzzles, naps, and happy hour by the water. We were there to dye and hunt eggs, make resurrection rolls and celebrate Easter. We soaked up sunshine and watched bare trees around us sprout spring blooms, while colorful wild flowers popped up along our walking trails. These spring days spent at the lake and the memories made will always be special to me. It was such a welcome change of pace, and a much needed break.

I know that many people are anxious for things to go back to normal as soon as possible. I get that. But I’d be lying if I said there wasn’t a part of me that dreads getting back into our routine. The experience we’ve had during this exceptional time will change how we make decisions and prioritize things going forward. I also realize others have seriously struggled through the last several weeks for a variety of reasons, and hope that my enjoyment during the same time doesn’t seem insensitive to their challenges. I don’t share our experiences to rub anything in, but to serve as a reminder for myself to not take the simple luxuries in our life for granted.

 

It has become so easy for me to be so wrapped up in my own experiences that I fail to see the bigger picture. I feel like I’m constantly looking for it, but over and over again, I’m short sighted. Part of that is due to the lens through which I see the world now, shaped by my experiences as a special needs parent.

I want to see past my own scope and consider how my words and actions affect others, but I’m consumed by thinking about my own feelings and family. It doesn’t always feel like my unique perspective is a choice, though.

Every little thing, and every big thing too, seems to have a different impact and meaning for a family like ours. Decisions that are important for everyone, like the school district where you live or the type of vehicle you drive, come with an entirely extra set of considerations for us.

In any situation, my brain defaults to what things will mean for Gage, and then how those choices will affect his little brother. And if I don’t automatically consider those things first, I’m flooded with guilt for neglecting to do so. I want to see past my own little world—my feelings, my family, my kids—but more often than not, it’s what consumes my thoughts.

Lately, it seems like my own little world has shrank significantly. Where will my focus lie when I’m confined to the walls of my home? Not surprisingly, I still have a narrowed perspective. I’m less worried about running out of toilet paper and more concerned with being able to fill prescriptions for seizure meds. I think about how we’ve spent the last five years trying to have as “normal” of a life as possible, intentionally saying yes to things, even when saying no is easier. And now we’re quickly reversing course, being extra cautious. It won’t be like this forever, but it is for now. For the time being, we’ll make extreme choices (or have them made for us) and say no, and do so without guilt or apology.

“Normal” may seem like a distant memory for many people right now.  But I believe we will get to the other side of this eventually. Even that time in the future might be a new normal, with some major shifts in behavior and lasting impacts. I’m hopeful it will still include choosing to say yes and reconnecting with friends we haven’t seen in far too long. Special needs parenting is isolating enough. Connections and shared understanding have to be sought out.

What I do know is that we need each other. We’re not meant to do this alone. I’ve got to see past my own little world, because those connections are worth it. Considering how things affect more than just me and my family is equally important. The isolation that’s all too real must be combated with feeling seen and known, even if that’s only virtually. Maybe in the best case scenario, this crazy experience will bring us closer together, even as we’re separated physically.

 

I’ve realized for awhile that I nearly never live in moments of silence. There seems to be ongoing noise in every single environment. The radio is playing, I’m having a conversation with a three year old, or my inner dialogue just never quits.

The “noise” is not unwelcome. I love music and I especially enjoy chats with Caleb these days. But I wonder sometimes if I’m a little afraid of the silence. Quiet times are the moments when my inner dialogue goes into overdrive and allows all the thoughts, pleasant or otherwise, to come flooding in. Worries about what’s coming next, what if scenarios regarding treatment options or the next best decision for Gage. Feelings of melancholy that may be easy to suppress if I just play a song and sing along instead of leaving space for silence.

Noise, in whatever form, is a distraction from things that are hard to think or talk about, or just plain hard to feel. But even as I put these words into writing, I realize the value in quieting the noise. Sometimes I need to feel the hard things, think about the hypotheticals, and just process all the things instead of suppressing them, burying them under more noise.

What I really crave is an inner peace…calm…quiet. Honestly, it’s hard to imagine what that would feel like. True silence. To quiet the noise both outside and within.

Last weekend we took friends up on their extremely generous offer to watch our boys overnight and Evan and I had a quick getaway to Kansas City. It was so nice to see friends there we hadn’t visited in years. We ate, drank and laughed hysterically playing board games. Needless to say, we both enjoyed ourselves and were glad we went.

Preparing to go had me full of anxiety, but I thought it would be a nice little test run before we stay gone more than one night to celebrate our anniversary this month. All in all, it was a success with no issues while we were gone. The days before we left, as I made notes about medication and thought through routines, it seemed like a lot. Maybe too much for our friends who have 3 busy boys of their own, with basketball games and birthday parties to attend on the day we’d be gone.

But I was reassured it was fine. At the end of the weekend, that same reassurance was there, my friend insisting it was “no big deal.” I looked her in the eye and said while it might not seem like a big deal to her, it was, in fact, a very big deal. For someone to go out of their way and offer us help, expecting nothing in return, is a very big deal. We’re so lucky to have people in our lives willing to offer that kind of help. Believe me, it is deeply appreciated.

The thing that surprised me the most while we were gone was just how much I missed my boys. We were only away for one night, but they were the first thing I thought of when I woke up the next morning. I actually awoke in the middle of a bizarre dream about bringing along my (nonexistent) puppy for the trip and then forgetting it was packed in the car the whole time! Some strange subconscious mom guilt or something.

I remember years ago having Gage’s newborn photo shoot and the photographer was telling me about a trip to Hawaii she had planned. She just wasn’t sure she’d be able to make it on the trip for fear she’d miss her daughter too much. I remember thinking she was crazy. I just couldn’t wrap my mind around being distracted by anything while relaxing in paradise. It all makes sense now.

Now days, getting away takes a lot more thought and preparation than it did when we were younger and more spontaneous. I still enjoy traveling, but the emotions and anxiety that seem to come along with it are a big change that I’m still getting used to. Regardless, I think it’s worthwhile and I’m so grateful for the chances we have to sneak away from time to time.

I remember the first time I connected with another special needs mom to speak specifically about our parenting experience. Although it was a relative that I’ve known forever, I was too afraid to reach out. I’m so glad she contacted me to offer support. It was such a relief to feel like someone else could really understand. I still rely on this person on a regular basis for advice on everything from wheelchairs to seizure meds and value and trust her opinion so much. I also love to hear updates about her sweet little girl who’s just a few months older than Gage.

I can also distinctly recall the first time another CMV mom reached out to me. Through this fateful connection, I was hooked up with an entire online community. I’ve watched other kiddos grow up on Facebook, savoring their sweet pictures and videos, celebrating successes, and agonizing over challenges right along with them. It’s such a hard thing to explain, but there’s a strange connection with children who share the same diagnosis. I think we look to each other for the things we recognize in our own kids and to learn from experience of those walking right along with us. There’s a bond with the kids who remind me of my own, and a respect for the moms I relate to on a unique level. From the screen of my smart phone, I watch people in completely different scenarios – single moms, college professors, and those who started families much younger than me, and feel a odd familiarity with the life they’re living.

And then there’s another category that’s one of my favorite type of connections. Local moms I’ve been introduced to via our kids. What a treasure!!! Back in the days when all of Gage’s therapy took place in our home, I vividly recall the desperation for connection I felt and expressed to our therapists. The early intervention model was a huge help to us in those days, but didn’t lend itself to meeting other parents. It wasn’t until Gage was 3 and receiving services in the community that I started meeting other local special needs parents. It was such an answered prayer.

At one point, another mom invited me to lunch with her and some friends. I felt like I was intruding since they’d known each other for years, but she assured me it would be fine. Man, am I glad I went.

The children of these moms are all in their early teenage years, so their experience and insights were so valuable! We talked about the nitty gritty and ins and outs of things like CP treatment, special needs life jackets and even wheelchair accessible vehicles. But my biggest take away from that encounter was watching a group of vibrant, fun, funny women just being friends. They joked, caught up, laughed and didn’t hesitate to tell the restaurant manager that he needed better accommodations for wheelchair users when he came to check on our table. Not in an angry, confrontational way, but in a constructive and lighthearted way in response to the question asked.

I remember I sat back and watched them in amazement and had a moment of clarity that everything was going to be alright. Seeing them and their interactions gave me a sense of hope. These awesome moms didn’t seem sad or bitter about their lives. They seemed joyful, excited about new things going on, and perfectly willing to share a smile and helpful advice with a stranger.

I won’t forget the wisdom one of the moms, who I now consider a friend, shared at that first meeting. She told me that looking back, she wouldn’t change anything about all the different things they’d done for her son over the years, which included a variety of therapies and treatments. But she would change how much she beat herself up over all of it. That will always stick with me.

No matter what situation our kids are in, I think it’s easy to fall into the trap of feeling like we’re not doing enough or not doing good enough. I’m grateful for another mom’s perspective about extending ourselves a little grace. Even if we drop the ball in parenting from time to time, we’re not in it alone. If we’re really lucky, we’ll have others to watch and learn from along the way.