Death… Guest post from Tammy Stearns

I’m struggling to find words to share today, so I’m borrowing someone else’s. Lately it seems like death is all around, and I’m having a hard time articulating my feelings about it. But I keep feeling the nudge to share in some way, and hopefully it will help someone who needs it.

The beautiful truth in the words below was shared by my friend Tammy Stearns. Tammy is a missionary in Nicaragua with Project HOPE and from the first time I met her, I sensed such a peace and gentleness in her spirit. Over the years, I’ve learned so much from her in the wisdom she shares through her experiences. She serves the Lord and his children with every fiber of her being. She’s an amazing example of obedience. A few years ago, she unexpectedly lost her teenage daughter, Taellor. The ways she has poured her heart out in writing since then have been such a huge help to me and to so many. The words below were originally shared by Tammy over a year ago, but are as relevant as ever today. If you’re dealing with a loss, I pray you can find some peace. 

Death…..

We can either let it draw us closer to God as we celebrate the reality of eternity or we can allow satan to use it to draw a wedge between us and God. It’s our choice.

Perhaps we just have to sing praises for awhile with tears in our eyes, read Scripture with our heart seemingly broken and in obedience follow through with being obedient as our flesh seems to be torn into and, yet, our soul is at rest.

At rest.

Our eyes may seep tears and our bodies feel faintly weakened but our very souls almost quieten as if hearing the words “Holy, Holy, Holy,”. The tethers of this world become lesser than the pull towards the throne. The veil becomes thinner. The Angels beckoning becomes stronger as we once again are reminded that this world is not our home.

There are those who have a picture in their minds of what grief looks like. A schematic, a drawing or an image with a descriptor that lays out what should be observed and what shouldn’t. Yet, too often, this is the worldly view of the grief-stricken. There is no picture that encompasses what grief looks like for everyone. There isn’t.

For some, it may ebb and flow. For others, it is a constant ache while for someone else it may be unrelenting. And yet for some, there is an inner peace that takes over and with a calmness that is indescribable. A joy that comes from foundational Truth. An assurance of not finality but rather eternity. The promise of tomorrow instead of the forgotten of yesteryears.

Satan tries to exploit death. He tries to make it fearful and mysterious. But the sting of death was overcome at the cross leaving no longer fear to create terror but rather pure joy to be had. And while there will be empty spaces in this world, there is rejoicing at the throne of one more coming home.

I choose to see joy. I choose to obediently look towards the cross. I choose to seek His face through tear stained eyes. For there is where peace will be found. For there is where the cross beckons. There are those who will forever call me crazy, delusional and misled but the only voice to which my ear turns is the One who took it all to the cross.

Tammy recently published a book, Know Hope, which includes a collection of her writings and reflections on scripture in the wake of tragedy. If you find yourself craving more of Tammy’s writing, like me, you can get your copy here

Travel Takeaways

Before our trip to DC, I was telling friends that no matter how things went, I knew I would learn from it. I’d either learn what tips and tricks to make travel with kids easier for the future, or I’d come away with a feeling of “NEVER AGAIN!” Either way, it’d be a valuable lesson. The good news is I haven’t sworn off travel with kids for the rest of my life! I think there were several important takeaways from this trip, that ended up being less about travel and more about life in general. Here’s a little more about some of the main ones.

  • Never underestimate the kindness of strangers.

I think to mentally prepare for our trip, I had imagined the potential worst case scenario. In talking through plans with my sister before we traveled, I told her I had to take a car seat for Gage to sit independently on the plane, even though I didn’t want to lug one more thing through the airport. I said “What if the flight crew insists Gage be in his own seat and he can’t sit without support and we didn’t have a car seat for him and he can’t sit in my lap and they have to ground the plane and the whole flight is delayed and it’s all my fault and every other passenger on the plane hates us???” I realize that sounds pretty extreme, and luckily we did not end up with a flight full of passengers hating us.

I really believe Gage brings out the best in people and even prompts extra acts of kindness from strangers. As I was struggling to break down Gage’s wheelchair to be gate checked, a gracious soul stopped to offer help and then carried his car seat all the way back to our row before returning to her seat in first class. (Side note – for special needs moms traveling with kids, one thing I learned is to always refer to Gage’s ride as a wheelchair and not a stroller. Multiple airline employees told me our stroller was too big to gate check before I explained it was a medical wheelchair.) Another stranger stopped to offer help as well and told me exactly where to leave the items for gate check. I was so grateful for the help and being on the receiving end of these random acts of kindness was a great way to start our trip.

  • My plans are not always best.

Like I said, I was not thrilled about dragging a car seat all the way through the airport to our gate and having one more thing to get through security, in addition to 2 kids, a diaper bag, my own back pack, Gage’s medicine and a massive stroller, oh, excuse me, I mean wheelchair. But after talking to the airline about requirements for Gage’s age and his seated ticket, it seemed like my only option. Once we were on board the plane and Gage was settled in to his own seat, I was so grateful to have it. I imagined it being easier to just have him on my lap the whole time, but realize now how much harder that would have been. I needed hands free to grab snacks, drinks and Caleb from time to time when he tried to take off down the aisle. And we were lucky enough to have some extra accessories for our wheelchair that allowed the car seat to roll right along with the kiddos. This was my trial run of the stroller set up.zippie voyage I sent the picture to my sister and said we might as well take one more kid since we had an empty seat.

  • Be yourself and figure out what makes that easier.

Once we actually got to DC, my focus shifted to our reason for being there, which was to participate in Zero to Three’s Strolling Thunder event and share our experience as a means to advocate for changes to support families and young children. Personally, I felt it was important to be there with both my boys, not just Caleb who’s under 3. Having Gage there, and the 2 of them together, puts a face to families dealing with disability and the dynamics that come along with that. Zero to Three arranged for visits to the offices of each of our members of congress, which I felt completely under-qualified for and intimidated by. I really thought I’d be a nervous wreck, or I’d just start talking about my kids and cry in front of everyone. But having my kids with me at those meetings helped take the nerves away. When I was focused on just being a mom and talking about my family and our experience, it felt natural and easy, and got more so as the day went on. Gage and Caleb were so relaxed by the end of the day, they took a little nap during our last meeting. naptimeI guess what I’m getting at is that when I focused on my kids and felt like myself in the role of mom, I was less worried about how I sounded or the way I looked or what I was wearing.

  • It’s always good to be home.

We adored our time in DC. Being in our nation’s capital was an awesome experience and we soaked up every bit of adventure we could, whether it was marveling at the architecture and monuments, learning bits of history from an amazing tour guide from Tipton who’s a DC transplant, checking out Smithsonian museums, or just taking a break and dipping our toes in a fountain. As much as we did, I felt like there was still so much to see and do and I look forward to a chance to hopefully return someday with Evan too! But I felt the same way I feel about every trip I’ve taken. At the end of it, I was ready to be home. I think that’s a good sign that I’m in the right place. There’s no place like home!

 

 

In Over My Head

I have a trip coming up very soon that I’m so excited for. Though I must admit, I feel a little ill-equipped. Early Sunday morning, I’ll be headed to Washington DC with both my boys. I’ve never been to our nation’s capital and I jumped at an opportunity to go! In the rush to get an application submitted for a chance to represent Missouri at Zero to Three’s Strolling Thunder event, I didn’t have a chance to let all my doubts creep in and keep me from doing it.

Now that it’s a sure thing and only a few days away, I’m still feeling the same excitement about my first visit to DC. I’m also feeling a little nervous about speaking to my senators and representatives to advocate for better paid leave policies, affordable childcare options and support for early intervention services. And I’m more than a little nervous about flying for the first time with two kids. And their giant stroller. And car seat. And luggage. And medicine. And diapers….so many diapers.  Luckily, my older sister is joining us for the trip! When I called the airline to ask questions about traveling with the boys, she said, “Thank God your sister is coming with you.” My thoughts exactly.

So, I know with help it will be alright, but I still feel a bit in over my head. But that feeling is nothing new. It pretty much sums up my feelings about parenthood. I have no idea what I’m doing most of the time. Our days seem to be filled with rushing from one thing to the next, inevitably forgetting something at home, like Gage’s backpack or equipment we borrowed from the speech clinic, or, most importantly, my travel coffee mug!!! (Those are all real life examples from the last week alone, by the way.) But I can think back to several other examples of times in my life when I felt ill-equipped and things ended up working out just fine.

When I was a sophomore in college, I decided I’d spend some of my summer break in London. It was my first time flying solo and quite the experience. I flew out of St. Louis and managed to barely board my plane in time after a nice farewell lunch with my family outside of the security checkpoint. I totally underestimated the time I’d need to get through security and during that process, I kept hearing my name announced over the loud speaker for the final boarding call. I was the very last person to board the completely full flight. I’m sure everyone else onboard hated me. When I arrived at O’Hare in Chicago, was soooo lost and completely confused by the different terminals. I wandered aimlessly for quite some time until finally another traveler with the Missouri London program found me and told me where the group of other college students were gathered and waiting for our connection. I was so thankful that I just happened to run into them, or I may have never made it out of Chicago. Eventually I made it to my destination and had an awesome few weeks of unforgettable experiences, and just a few more instances of getting totally lost.

Another travel adventure when I was in over my head that had nothing to do with flying or navigating airports was when I tagged along with some friends for a ski trip in Colorado. I had absolute zero experience snow skiing, but a friend convinced me if I could water ski I could “totally do it.” Turns out, that was not true at all. On day one, I found myself at the top of a mountain in borrowed ski boots that were two sizes too small with NO IDEA what I had gotten myself into! skiersMy group of friends all shared a few tips and then it was time for me to sink or swim. I sank. For four days of skiing, I pretty much tumbled down a mountain repeatedly. But by the grace of God, I had a good friend there with me who was willing to stick by my side. I also rented skis that actually fit after my first trip down the mountain when I could no longer feel my feet. I may have never made it off the blue slopes (I think those are the easiest ones???) but I still look back on that trip fondly and remember having a great time trying something new. God gave me what I needed, even if it was not stellar skiing abilities.

And that’s what God has so faithfully done for me over and over when I don’t have what it takes. He gives me what I need. Not necessarily by making things easier, but by equipping me in other ways. Parenthood is no exception. It’s a learning process every day, and it definitely takes a village, but I’m so glad that I get to do it. Being in over my head just reminds me that I can’t do it alone and I need to rely on God’s help and the help that He provides in the form of travel companions and ski buddies.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 Corinthians 12:9

 My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26

I lift up my eyes to the mountains—where does my help come from? My help comes from the Lord,the Maker of heaven and earth. Psalm 121:1-2 

 

Latest Project

I just want to take a chance to brag on my awesome husband. Evan is such a good dad. The bedtime routine between him and the boys will melt your heart. He is always thinking of us and ways to plan and save for our future. He just does so much for our family. My favorite project that he’s taken on lately has been adding a ramp to our back deck for Gage to wheel down.

My boys LOVE to be outside. Caleb will stand at the patio door and beg “owside…owside…owside” any time of day, even if it’s dark and rainy and 30 degrees out. So, we try to spend as much time outside as possible when we actually can. Last summer, the back yard was our playground with a kiddie  pool, water table, a couple swings and a sweet hammock for mom (shout out to my amazing sisters!) We practically lived out there and loved every minute of it. This year, Gage has been using his gait trainer more and more, so we’ll go out and he’ll wheel around on the concrete patio, just having the time of his life! Caleb literally just plays in the dirt. But if it makes him happy, I’m totally ok with that.

Evan made it a priority to have a ramp added to the deck this summer. I figured once school was out and he was on summer break, he’d be hard at it, working when the weather would hopefully cooperate and stay above freezing for more than 48 hours at a time. Instead, he’s been working on it every chance he gets. The last several weekends, even if they are interrupted by flat trailer tires and other unforeseen circumstances, have been dedicated to working on the deck. He goes the extra mile to find any way possible to save us money on the materials, strategically making purchases a bit at a time and using coupons. Below freezing temperatures did not keep him indoors, resigning to wait for a nice day. He just added some layers and kept working. When I asked him how I could help, he would always respond, “just keep those boys happy.”

At first, Evan was just going to add the ramp with new materials for now, then wait until later to replace the original deck. But after getting started, he made the decision to replace the old boards now as well. One day he came home on his lunch break and the boys and I left to go to a therapy appointment. When we got back, ALL the old boards had been completely removed! I was amazed at the progress he’d made in such a short time! And then he ran back out the door to return to his job and teach until 6 pm like he does 4 days a week, like it was no big deal at all.

He hardly ever complains, even though I know he’s sore and tired and has a ton on his plate. I admire his motivation to do things himself, even if he has to learn as he goes while he’s doing them. But my favorite part is the reason why he’s doing it…that the source of his motivation is completely unselfish. He knows that adding that ramp will make it that much easier for me and the boys to get outside and play in our favorite spot this summer. Just like everything he does, he’s working hard for us. Gosh, I love him.

We’ve still got to add railing, but all the decking boards are now in place and we are so excited to try things out! Caleb just runs up and down laughing the whole time and Gage (with some help) rolls quickly down, which he thinks is hilarious, and then works really hard to get back up. I love not having to lift and carry equipment as far. So, if you’re looking for us this summer, we’ll be spending 90% of our time in the backyard. Come hang out with us!!

gage on ramp
Gage working hard to make the uphill climb!
Caleb deck furniture
Caleb thinking about the best furniture arrangement for our new outdoor space.
happy G
This is how Gage feels about the new ramp!

A Heck of a Ride

Today was Gage’s first hippotherapy session at Dynamic Strides. We went for a PT evaluation a couple weeks ago and decided to pursue it as a way for him to do something different and fun, but still therapeutic and beneficial. I’ve heard so many good things about therapy with horses and how good it can be for kids with CP, so I was excited for Gage to get started.

At the initial eval, Gage was all smiles when we rolled into the barn and he got to meet a horse named Peaches. He even reached out to pet her hair and got some kisses from her on his hand. Caleb was a whole different story…he was so excited to see a horse, right up until we walked through the door to the barn. Then he immediately wanted to turn around and go back where we came from, but managed to stay calm enough in mommy’s arms while clinging to me for dear life. The PT we met with told Gage that she had the perfect horse in mind for him—a smaller pony named Coco. We left that first appointment excited for new possibilities, with an inkling of nerves about adding more to our schedule and just the unknowns that come along with something new.

Our session today started off with friendly greetings from the therapists. As we prepped Gage for the ride with an adorable little blue helmet and a vest forselfie added support, things went downhill. He did not want to be messed with as we tightened straps and tried to keep him calm. Taking a selfie on my phone wouldn’t even cheer him up, and we all know what a camera ham he usually is! His protests continued for about three laps around the barn. I waited with Caleb in a viewing area at one end of the arena and would think to myself, “oh good, he stopped crying” only to realize he just got far enough away that I couldn’t hear his screams. But eventually he did stop screaming. He still had a few sniffles here and there, but as long as Coco kept moving forward, he was pretty horsecontent. He looked so cute and tiny propped up on that horse’s back, with a foam wedge in front of him to  bear weight on his arms. The therapist would give me thumbs up from time to time as I watched from behind the big windows.  At the end of the session, I got to step inside the barn for a photo op without the glare of the glass, but by then, Gage was mad all over again because the horse stopped moving.

So, day one is in the books. All the staff at Dynamic Strides was extremely gracious and reassured me that many riders have a rough start and end up loving it. I’m keeping my fingers crossed that’s the case with Gage. I have to remind myself that every new thing we start is hard at first. We’re just trying to figure out together what works and what doesn’t. One thing is for sure, we’ll never get bored!

Running

“You can do it. You can do it. You can do it. Keep going. Keep going. You’re almost done. It hurts. It hurts. It hurts.” This is the inner dialogue running through my mind at the end of a long run these days. I’m training for a half marathon that’s coming up next weekend. I use the term “training” loosely because I’m really only running once a week, trying to build up to enough miles to ensure I’ll be able to finish 13 the day of the run. I’ve ran in a few races before—some 5Ks here and there and 2 half marathons over 5 years ago. I’ve never been super fast or competitive, just set out to finish and would usually come up with some arbitrary time as a goal. Back then, training wasn’t easy, but it was enjoyable. I’d use the couch to 5K app on my phone or for the halfs, train with a group, which was awesome! I met some really cool people – I think runners are nice people by default. Maybe the endorphins from exercise make them happy and therefore kind. I’d be up before the sun a couple times a week to run. Evan would say “who are you?” knowing I am NOT a morning person. But the accountability to people I was meeting was enough of a motivator. Getting to see the sun rise was a pretty sweet bonus too!

After having a couple kids I thought signing up for another half marathon would be a great way to get back into shape. Only it’s so much harder now! Simply finding the time to run a couple times a week is a challenge, never mind the physical toll. Last spring, I was signed up for a half marathon that I did not complete. My attempts at training fell pretty flat. There were mornings I’d plan to get up and run, and I’d be in tears before I ever left the house because of exhaustion from being up with a baby all night. My attitude usually turned around after a cup of coffee, but my heart just wasn’t in it.

While running, I’d try to focus on what motivates me. My mind immediately went to my kids. I’d think of all the physical challenges that Gage faces, realizing that if my brain tells my body to put one foot in front of the other, my legs and feet will listen. That’s not the case for Gage, so I never want to take it for granted. But that is hard for me to focus on that for motivation, because I tend to become overwhelmed with emotion and find it hard to breathe. Another running revelation I had was that in all the challenges he faces, Gage is mentally strong. He never gives up, even when I’m weak. Even though I didn’t have the physical transformation that I was hoping for after last spring’s training, I’m glad for the time spent with my thoughts. Ultimately, I opted to do the 5K at that event instead of the half marathon. This year, I thought I’d give it another try.

This time is different. Unlike races in the past, before kids, I’m not speed training or trying to beat a certain time. This time, I just want to finish. This time, it’s about putting one foot in front of the other. This time, it’s about mental strength. This time, my support system isn’t a training group of new people I’ve just met, but a group of life-long friends. Friends who say yes to signing up for a race I suggested, just because I asked. Friends who handwrite a customized training plan for me, starting with low enough mileage that I can actually get started before feeling defeated. Friends who drastically slow down their pace in order to help me train. Friends who mail me supplements to help me have more energy for the longer runs. Friends who sacrifice a chance at their personal record on a flat, easy course in Springfield in order to stick by my side and help me finish. I can’t believe how lucky I am to have these awesome women to run with.

Me and Lori runners

And there’s another key difference about this run. It’s the Big Party Half Marathon event for Camp Barnabas, a Christian summer camp for kids with special needs. In the past, I’ve picked races based on where they fall on the calendar, and appreciate the fact that they benefit local charities. This time around, the cause was the reason for choosing this race. I can’t wait to see the campers participating in the stroll before the running events start. I’ve watched the videos online of kids arriving at camp, which will make your day! Hopefully cheering for the strollers offers a glimpse of what that’s like in person. Regardless of how the 13 miles following that end up, I think the smiling faces and determination of the campers will make participating in this event worthwhile.

 

“Gage Can Play With Me”

We recently stayed with some friends out of town and were overwhelmed by the amazing hospitality they poured out. We shared several delicious meals, had a comfy place to sleep and had hot coffee around the clock. Not only were our friends gracious hosts, their kids were warm and welcoming to ours too. Caleb was over the moon that his new buddies were willing to share their toys! The night we arrived, as the adults sat around the kitchen table talking after dinner, the kids were playing in a bedroom. Gage was hanging out with the grownups at first, as he often does, but at one point I took him back to the room. We were greeted by a three year old who told us “Gage can play with me.” He then proceeded to show Gage how to use his Fisher Price CD player and made sure he had a disc loaded. It made my whole night.

It’s always interesting to see how kids interact with Gage. I’ve felt emotions all over the spectrum as I’ve witnessed it. Joy when he’s included. Frustration when he can’t quite keep up or safely play with everyone else. Sadness when I’m helpless to do anything about it. I used to have a hard time with all the questions or comments I’d get from kids about Gage, which have ranged from why he can’t walk or talk to how messy he is when he eats. Now I can see they are just curious. They tend to get especially inquisitive when their younger siblings, who they know are younger than Gage, start to meet milestones he hasn’t. It still stings from time to time, but it’s actually refreshing how honest kids are…they just say whatever they’re thinking. Gage is one of my favorite subjects, so I’m happy to tell kids more about him and his different way of doing things.

balloonLately, there have been so many instances that leave me feeling warm and fuzzy about Gage’s interaction with other kids. At a friends’ house a few weeks ago, their little girl kept insisting “that boy” come play with her and the other kids. Another friends’ daughter recently found endless entertainment taking turns bopping a balloon with Gage, just meeting him right where he is and enjoying something with him that he’s able to do. Gage’s buddy Owen was recently caught talking on the phone with him by his mom. I get a kick out of brosthe fact that, of all people, he was pretending to talk to Gage, who doesn’t have any spoken words. At school drop off and pick up, I love the way Gage’s classmates greet him by name or let him know “your mom is here!” And on a daily basis, my heart is warmed by the way his little brother Caleb shows him affection (when he’s not ripping off his glasses or accidentally stepping on his face.) The positive interactions Gage has with other kids are just another reminder of how many good things we have filling up our lives.

 

Update

I just wanted to share a quick update after our visit to St. Louis last week. We had a consult with Dr. TS Park at St. Louis Children’s hospital to discuss the possibility of Selective Dorsal Rhizotomy (SDR) for Gage. SDR is a procedure to reduce the spasticity (muscle tightness) in patients with cerebral palsy. For now, Dr. Park did not think Gage is a good candidate for the surgery, but asked us to come back in another 6 months to reassess things, and possibly explore orthopedic surgery options with another doctor there. So that’s our game plan for now.

I was relieved after the appointment for a couple reasons. One being that we have a clear next step, without being faced with an agonizing choice of whether or not to pursue surgery, at least for now. But if we are faced with that choice down the road, I also feel reassured that Dr. Park would not push us toward surgery unless he truly feels like it will help Gage have a better quality of life.

Peace

A few years ago, I heard about the concept of focusing on a word for the year rather than a New Year’s resolution. I liked that idea. At that point, I decided my word should be love. I was head over heels for my new baby boy, experiencing unconditional love in a way I never had before. It just made sense, and was also a good reminder for me to show love to others.

As 2018 kicked off, I wasn’t sure what my word should be. I wrote a few other goals for the year, but didn’t worry about it too much. A few weeks into the year, a friend invited me to try something I’d never done before—holy yoga. I’m no yogi by any means, but thought it sounded cool. When I signed in and confessed my inexperience, the instructor reassured me, “it’s not about the yoga.”

She led us through a series of stretches and poses while she talked about the concept from the fruit of the spirit she was focusing on that week—peace. As she explained how the prior couple weeks had been about love and joy, I realized I had found my word for the year. Looking back at the prior couple years, you could easily say my focuses were love and then joy. Peace was the perfect word for 2018.

The instructor’s message was such a blessing to me that morning. I shed tears as she reminded us that God provides us with a peace that passes all understanding. I tried to shift my focus from the aches and pains in my body and how awkward I felt trying to maintain my balance to the truth she was pouring out as we moved through a “flow.” Regardless of my complete lack of yoga know-how, what she said before we started was so true…it wasn’t about the yoga.

After class, I told my friend who invited me how much I enjoyed it and about my enthusiasm for my new word for the year. We both agreed that we’d be back to the class in coming weeks, but life happens and I have yet to return. It’s funny how God puts you where you need to be right when you need it. Although I hope to get to another class soon, that one little glimpse of yoga and the revelation of my word, peace, has already helped me so much this year.

It’s like God knew I needed to be focused on the peace He provides. The following weekend I was feeling anxious and nervous about speaking at the Tipton Prayer Breakfast and my sister shared this verse, John 14:27, with me.  It was an affirmation of my focus on peace and the most perfect reminder in that moment.

peace

This image is now the screen saver on my phone to help me stay focused on peace. Over and over again this year, it’s been the perfect reminder for me. As I witnessed my sweet boy experience his second seizure, I was able to work through it and stay calm. As we prepare for a consult with a neurosurgeon for Gage next week, God is giving me His peace each day, and even moment by moment.

I know that the prayers that cover me and my family are a big reason we can find peace in the midst of tough circumstances. My prayer for each of you is that, no matter what you’re going through or what challenge you’re dealing with, you’d be able to find that same peace that passes understanding.

“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” John 14:27

“Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” Philippians 4:7

Still in the Woods

In the early days of Gage’s diagnosis, I would try my best to take things one day at a time and celebrate each accomplishment as it came. I didn’t realize I was doing it at the time, but I had a mental checklist of ways we were in the clear. A check up at the pediatrician confirmed he had gained a few ounces…yay! A visit to the ophthalmologist let us know his eyes looked healthy…hooray! The audiologist established that he was hearing all tones…awesome!

It was so naive. Because truth be told, we were never out of the woods in any situation. Don’t get me wrong, we are so thankful for all the strides and gains Gage has made and I count each and every day of good health as a huge blessing. He’s doing really well lately. Others notice it and so do we. And I still value celebrating each accomplishment, no matter how small. But the scary risks and unknowns don’t go away. Gage has never made it onto the growth charts for his age. He needs glasses to help him see. We’ll keep checking hearing indefinitely. I would love to have a fix for every issue and the reassurance that our struggles are in the past, but that’s not our reality.

2 days ago, Gage had another seizure. It’s the second one he’s had. This time, we were at feeding therapy when it happened. Again, we were lucky to be surrounded by other people there to help. Again, it started slowly and was hard for me to recognize. Gage’s distant stare is also a mechanism he purposely uses to avoid things he doesn’t want to do, which I thought was what he was doing at first. But when I couldn’t get him to respond to his name or make eye contact with me, and especially when he showed no response to playing music or blowing bubbles (his favorite distractions during therapy) I knew something more was happening.

As we moved Gage from his chair to the floor, it seemed like he started to respond to our voices, and at that moment, his eyebrows started twitching up and down and his shoulders started jerking. I decided not to wait any longer and administered his emergency medicine. It took a few minutes for it to take effect, but eventually his uncomfortable movements and labored breathing turned to a peaceful sleep—a result of the meds.

The gracious faculty, staff and student at MSU were so awesome. They assured me we could stay there as long as we needed, which is exactly what we did while Gage slept. They made helpful suggestions, like writing down the way things happened so I could remember when it came time to talk more with the doctor. I was also lucky to get a call back from the nurse at our neurologist’s office in record time. She walked me through what to expect as the meds took effect.

Obviously I never want Gage to have a seizure, but I feel lucky that in both instances we were around others who were able to help. Questioning what to do and how to respond is one of the hardest parts, and I was glad to have others input as we walked through it. Talking afterward, I was asked when Gage’s last seizure happened and told them over a year ago—just long enough to give me a false sense of security. I never imagined we were completely out of the woods, but it was long enough for me to feel confident about our choice not to use daily preventative meds. Now we’re faced with the same tough choices a second time around…and another reminder that we are definitely not out of the woods.

I am in no way suggesting that we should live in fear or always be waiting for the other shoe to drop. I still wholeheartedly believe we should expect good things, but in our world that goes along with trying to be as prepared as we can, learning as much as possible and at times taking a leap of faith that we’ll figure things out and do the best we can for our kid. I hope this post doesn’t seem too negative or pessimistic, I just felt like I needed to share our experience and the feelings I’m wrestling with because of it. As always, I appreciate your prayers for Gage and for wisdom for us to make good choices and not let fear take over.

 “When I am afraid, I put my trust in you.” Psalm 56:3

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7

“For God has not given us a spirit of fear, but of power and of love and of a sound mind.” 2 Timothy 1:7