Goats in the Desert

There is this billboard I used to pass all the time between Roanoke and Franklin County. It is famous for having goats that just climb up onto the ledge to warm themselves up with the lights shining on the sign. I honestly couldn’t tell you anything that has ever been advertised on that particular sign. I just know that every time I pass it, I look for the goats. For the longest time (over three years of passing it), I never saw the goats. It got to the point where I started to consider this was all an elaborate prank like when you tell the freshmen there’s a pool on the roof of the school. Seeing the goats on this sign the first time felt like a miracle. I was so excited. It was real. Now, every time I see them, I smile. It’s just a fun quirk of where we live.

I was driving back from an event in Franklin County a few months ago, and I remember seeing the goats. I smiled as usual, then I really started thinking about them. How they felt so elusive. How seeing them felt like a special treat. How there were times I doubted their existence.

I think we all get like this at times with Jesus. We go through seasons where He feels far away. Where we don’t see a way out of our situation. Where we feel forgotten, left out, abandoned. We moved away from what we knew. We quit jobs, started new jobs, joined a new church, made new routines, etc. So much of this last year and a half has felt like an uprooting. Typically, I lean into it. I love change. But throwing so much new and different into the mix at once was hard especially when we were (and are) so limited in what we can do outside of the house with Evan. But then, I thought about the “goats” Jesus has placed before me in this season of parenthood.

God gave us a church family that immediately welcomed us in and seeks ways to make church a place for all three of us to worship and stay safe and healthy.

God gave us new friends who feel like family and understand what life has to look like for us in this season.

God gave us amazing home health nurses who allow us to be active in our church, run errands, go on the occasional date, and rest without worrying about Evan.

God gave me virtual friendships with other medical mamas that are so dear to my heart. Having friends who “get it” are so important.

God gave me this blog and social media as a platform to share Evan’s story and how we’re experiencing Jesus in it.

God gave us other blogs, podcasts, and social media accounts from those who walked before us in this journey– people who will likely never know us and how their honesty and stories have impacted our hearts.

God gave us encouragement through messages from old friends, family, and even strangers when we have needed it most.

God gave me a sweet reunion with a friend here in the coffee shop as I typed this post.

God gave us the best boy with the best smile to remind us of His goodness always.

God has given to us so much. But we had to look. I would have missed those goats if I hadn’t been looking for them. If I stopped looking at the billboard, I never would have seen that they indeed were real. If you’re winding down a lonely road, unsure of the reality of His promises, unsure of if He’s even there, don’t stop looking. Your goats are coming. Hold on.

“Look at the nations and watch—
    and be utterly amazed.
For I am going to do something in your days
    that you would not believe,
    even if you were told.”

Habakkuk 1:5

Home

When we moved to Roanoke after Evan came home from the NICU, we knew we needed to rent for a year. We had to move fast, and we couldn’t show our house with Evan still living in it. So we did rent and a mortgage for four months while we finished moving and listed our house. The goal was to find a home that would work in terms of accessibility for Evan, leave room to grow our family, and be close to our church and the hospital.

Our dream wish list for a home was kind of ridiculous. We had the things we dreamed of before Evan joined our family. We had the things we dreamed of for other potential children. We had the things we now needed to make life accessible for Evan. We had the things we dreamed of for Evan–not needs, just dreams. In a perfect world, we would find a house that checked off every item on that list and come in under budget. If you’ve ever bought a house, you’re likely laughing at this point. Compromise is almost always the name of the game when buying a house. You weigh your wish list and decide which things you can’t budge on and which things you can decide to live without. We fully expected that to be the case. We also expected the search to be long and hard.

We started looking in the spring knowing we wanted to move by the early fall when our lease would be up. It was hard. I remember Alex telling me about talking to a coworker about our house search. He told this guy about houses we’d looked at and why they wouldn’t work for us, and his coworker was just blown away by how many things we had to think about when looking.

Will a wheelchair fit around this corner in the hallway? Are these door frames too narrow? Is there a first floor bedroom Evan can use? How will we get him in and out of the house when he’s bigger and still not walking? Is there space for his equipment? Will the oxygen tubing easily make it from where he sleeps to where he plays? Can I see and hear him easily from the kitchen? Is the neighborhood too “busy” for him? Will we have to constantly deter neighbors from trying to see the baby to protect him from germs? (Everybody loves a good baby.) Is there space to build onto the house if needed down the road? Are we close enough to the hospital? Where’s the nearest rescue squad? Is there space to add ramps or an elevator? Is the house old enough to make us question the air quality? Is the house new enough that we know we won’t have to worry about replacing major things like water heaters or the roof for a while? The list probably could go on…

Meanwhile, we had our own dreams. Of course we were willing to compromise on our wants to make sure Evan got his needs, but it wouldn’t hurt if a house had at least some of those things right?

Nothing was meeting our list or even coming close. The houses that seemed possible came with huge renovation needs or the clear need to move again in a few years. We didn’t want to settle. We prayed for the right house to come on the market.

On a Wednesday night, I was scrolling through the listings on Realtor.com as I usually did every night just seeing if anything new came up that could work. There it was: a house exactly like I had always pictured us living in one day. From the outside it looked incredible. As we clicked through the pictures posted with the listing, we fell more and more in love with the house. I told Alex there was no way we would get it, but it was nice to dream for a night. We both agreed it was perfect. That is probably why we were so convinced we wouldn’t get it. Too perfect. There was just no way.

HOME.

I talked with our lender and realtor the next day. It was possible. We scheduled a showing. As we drove up to the house, I really felt like we were coming home. We walked in the front door, the first thing I saw was a big wooden sign above the mantle that said “His grace is sufficient.” The whole time we were looking, I thought “Okay, God will provide. We just need to trust Him.” I really felt in that moment, that He was saying “Here it is. This is the home I picked for you. I went before you as I always do to prepare the way.”

We wrote the sellers a letter with our offer. We wanted to explain why this house was perfect for us. We told them a little about Evan, his needs, and how the house could help make his life easier. I shared our heart behind wanting this house. Why we felt so at home. Maybe they would think we were crazy weirdos, but I knew we had to tell them. Our offer wasn’t competitive. It couldn’t be. This was a risk, but we trusted.

They accepted our offer and shortly after, I got a message on Facebook from Heidi, one of the owners. She used to be a NICU nurse in the NICU Evan spent his first three months of life. She worked and her kids went to the school we want to send Evan to for preschool. We had so many friends in common. But most importantly, this family loved the Lord. That sign above their mantle wasn’t just a decoration. It was truth they lived by. Here are her words:

“We are the family that lives on [road we live on], and your letter to us was such a special gift from God. We have been praying for the family that would buy our home. We wanted them to love it as much as we do, and we prayed it would be a blessing to them. We built our home thinking of our family’s needs, but our faithful God also saw fit to allow it to one day meet your precious family’s needs. I can’t get over how much He is in the details. I was a NICU nurse for 17 years in the place that Evan spent his first months of life. I worked alongside many of the nurses that cared for your beautiful boy. What a treasure it is when God shows us over and over that He sees us and knows us.”

When we moved in, the sign was there on the mantle for us: a reminder of His goodness and provision. I see it every day and think of this sweet family and how their obedience and faithfulness to the Lord has blessed us.

His grace is sufficient, indeed.
The Tate Family

We’ve been in our house now for several months. We’re slowly making it our own, but I love the reminders of the Tate family scattered through the house. They will forever be a part of our story–His story.

Yes, a house is just a building. And we do not idolize our house. We love it for sure, but its reminder to us of His sovereignty is why we are so blown away by this move.

We have two master bedrooms: one on the main level and one upstairs. Evan will keep the downstairs master as his bedroom. It makes it easy on days when he needs his oxygen all day. The tubing reaches from the machine easily into the living room which is big enough for Evan’s toys, high-low base for his chair, and stander. Everything is open on the main level, so I don’t have to worry about Evan if I am in the kitchen getting meds, prepping a feed, or pouring coffee. The first floor master has a huge bathroom that we can easily renovate when Evan gets big enough to need a handicap shower. We also see the potential space to put an elevator in for him. We can enter the house through the walkout basement and take the elevator straight into his bedroom. There is space to build a large garage in the future. There is space in the basement to let Evan scoot around on a makeshift “belly cruiser” so he can learn to crawl. There are spaces for both Alex and I to enjoy our hobbies without cluttering the rest of the house. There’s a big yard we can enjoy and build an “all abilities” swing set on. There are just so many things to love about our home. Isolation during cold and flu season requires us to be in the house A LOT, so loving it is kind of important.

But, my absolute favorite thing about our house is the view. We get to see the beauty of God’s creation magnified right from our windows.

Not a bad place to enjoy a cup of coffee.
Evan appreciates the view too.
When Ev needs a little fresh air, we can easily go for a walk around the yard. He loves looking around and being on the move!
Our first snow in our new house!

I cannot wait to see what the Lord does in this house. I cannot wait to witness His provision, faithfulness, and glory unfold before our eyes.

“Lord, you are my God;
    I will exalt you and praise your name,
for in perfect faithfulness
    you have done wonderful things,
    things planned long ago.”

Isaiah 25:1 (NIV)

The Cold Cup of Coffee

I picked up my coffee this morning, and it was cold. No surprises there. Some days are measured by the number of times my cup finds its way to the microwave. I know I am not alone in this.

I use the Marco Polo app to talk with other mama friends, and I think the subject of cold coffee or microwaved coffee comes up at least twice a week. As moms, we laugh because this is just another part of motherhood.

But this morning I got to thinking about this cold cup. I thought, what does it really represent? And Jesus spoke.

This cold cup of coffee is about sacrifice. The cold cup is a baby fed, a tantrum soothed, medicine given, diapers changed, boo boos healed, books read, imaginations fostered, and the list goes on. The cold cup is our children’s needs above our own. The cold cup, my friends, is the gospel.

Jesus laid his life down for us. He made the ultimate sacrifice so that we could be healed and reconciled to God. Matthew 20:28 says that Jesus “did not come to be served, but to serve, and to give his life as a ransom for many.” When we allow our cups to grow cold, we are living the gospel. We are following Christ and loving others (our children) the way He loves us.

So the next time you find yourself grumbling over your microwaved coffee, I challenge you to see it as a reminder of His grace and goodness. He says to you, “Well done, child, I am proud of you.” And goodness, how badly do we need to hear that each day?

2019 in Review

I feel like a terrible “blogger.” Am I even a blogger? I don’t know. It’s been about seven months since I last posted…whoops. Chalk it up to mom brain, exhaustion, having too much fun, a lot going on, etc, but wow, I kind of suck at this blog thing.

Just here to give some quick updates on Evan and what we’ve been up to lately.

Evan’s Health

Evan is doing REALLY well. He is weaning a little more from his oxygen, but like anything in the medically complex world, it’s usually one step forward two steps back. We are taking it slow, and we are so proud of his progress. He’s still taking all of his nutrition through his g-tube. Feeding is an area where he is pretty stagnant. He just doesn’t want to do it, so we are just taking his cues and working at his pace. We’ve had lots of appointments and seen lots of doctors, but overall, no major updates. Evan will get some genetic testing results sometime in February that will give us about a 50/50 shot at a diagnosis. If we do not get a diagnosis from that specific test, we may move to genome sequencing.

A few “new” things:

Evan will be getting botox to his neck and wrist muscles in a few weeks in order to help him with his range of motion. We are excited to see how this can help him.

We are getting a new helmet for his head shape in the next week since his head has grown and changed so much.

He got his SMO ankle braces for when we practice weight bearing in his legs. They have dinosaurs on them. They are awesome.

We are monitoring some positional scoliosis from his left sided preference/low tone, but for now his new wheelchair (WOOO!) is an adequate “brace” for him. I am really hoping he doesn’t end up needing a back brace because, let’s face it, the kid has a lot going on already.

Speaking of things we may add to his body, we will figure out his vision prescription this spring as he gets closer to turning two so that he can get his first pair of glasses. I am not going to lie…I am so excited to see how cute he is in glasses.

This summer, we will also hopefully make a final decision with his John’s Hopkins oculoplastic doctor on the potential for ptosis surgery (lifting his eyelids for better clearing of his visual axis).

We are in isolation for cold/flu/RSV season. It’s been so hard watching our other medically complex friends end up in the hospital with RSV or other respiratory illnesses.

Evan is steadily growing. He’s now 20 lbs 10.4 oz and 30.5 inches tall! We will likely increase his calories soon and adjust his formula to help him continue growing and fight off some chronic constipation.

As far as motor skills go, Evan is making slow but steady progress there as well. He’s able to hold his head up for a few minutes at a time now when he is motivated. His trunk muscles are starting to engage more too. He still doesn’t want to bear any weight on his feet, but we are trying! Oh, and, he rolled over!! I still haven’t witnessed it, but he has done it EIGHT times since November. Hopefully, I will be able to share a video of it soon!

We have home health nursing! I will write a whole post on this soon!

I think that’s mostly it for his health stuff! If you know us and I missed something, let me know.

Our Family

We moved! Early this fall, we bought our dream home! We are still really close to the hospital, and just about everything we could have ever wanted in a home. Moving will also be its own post later. It’s a crazy, God-filled story.

Evan is going to have a cousin! My sister is having her first baby (a boy!) in March. We are so excited! I can’t wait to watch them grow up together!

We’ve been able to have some really good time with our families over the past seven months. We took Evan on his first beach trip, and we spent a couple extra days in Maryland with my family when we went to our last Hopkins appointments. Both Alex and I have been able to make some solo trips to see our parents/siblings this fall too which has been great.

I’ve started volunteering at the hospital as a parent mentor for NICU and peds families. It’s been amazing. Right now, I am taking a break from it because of how many respiratory illnesses are around. I don’t want to bring anything home to Evan!

We’ve become a Children’s Miracle Network “Miracle Family” which is so fun! We were interviewed for the Radiothon that will air in March on our local station and I will be speaking at three different dance marathon events this spring!

We’ve really dived in at the church we started going to this summer, and we are so grateful for the family we have found there. Our faith has been strengthened by the community we’ve experienced. I can’t say enough how thankful we are to be a part of our church.

Business Ventures

I am starting to sell some of my crafts to start saving for a wheelchair accessible van and other handicap renovations to our home for Evan. I’ve been making t-shirts for bachelorette parties, onesies, and custom signs and coffee mugs. I find so much joy in creating these pieces for other people. I may start an instagram account this weekend to post items for sale just to test the waters. I don’t know if I am ready for a full on Etsy account yet. Somehow that intimidates me. If you’re in need (or want) of any of these items, contact me!

We’re Doing a Thing

So, we are doing a thing. We love NICU families, and we want to serve them in anyway we can. One way is through volunteering on our NICU’s Parent Advisory Board. Another is praying over these families. Soon, I hope to become a mentor for NICU parents. I guess one way is this blog? I don’t always know who I am reaching with this, but I pray there are NICU mamas and papas on here. But, anyway, we have a new way, and it is awesome y’all.

While Evan was still in the NICU, Alex bought me a new Cricut cutting machine, so I could make Evan cute custom onesies to bring me joy in a hard time. I think this machine is the best gift he’s ever given me. Anyone who knows me and sees pictures of Evan, knows that he wears a custom onesie almost every day. I am obsessed with making them. It is so much fun and weirdly relaxing.

So back to this thing we are doing. We’re making onesies for NICU babies. On Evan’s birthday, we made our first delivery to Carilion Children’s. Our hope is to keep this project going as long as possible. We recently started a GoFundMe page to help pay for the supplies needed to make these NICU Graduate shirts.

How cute are they?!

If you want to help us, we would be so grateful! I recently ran into a woman at Carter’s when I was buying more onesies, and she knew a baby who got one when he left the NICU last week. She told me it was such a sweet gift to the family and that they loved it. How cool is that? I did not think that I would meet anyone who got one of these shirts any time soon, but there she was sending me a wink from God letting me know that this was a good thing we are doing. We have a little ministry card that we are attaching to all the onesies. It has an encouraging note from us, a verse that helped us through the NICU (Psalm 61:2), and a link to this blog.

I told you that there was making in the breaking. He is bringing good to His Kingdom out of a place of uncertainty and pain.

I do need a little more help though. I hate calling this “Evan’s NICU Graduate Project.” It’s so boring and uninspired. Can y’all give me some suggestions for this? One day, we may turn this into a non-profit and offer even more to these sweet families, so it needs to be good! Leave a comment or email me through the blog with your suggestions.

Thank you for joining with us!

Dear NICU Mom,

This isn’t what you pictured. This isn’t what you wanted. This isn’t what you planned for. It wasn’t supposed to be this way.

But this is how it is. This is your new normal. This place will be your home for the next 20, 30, 100, 200 days. And it’s going to be okay. You will survive this. And Mama, you are not alone.

This journey will be hard. There will be days you feel like you can’t keep going. But you will. You’ll muster the strength. You’ll borrow others’ strength. There will also be days when you are so overwhelmed with joy that you feel like you will burst. I know it sounds crazy, but you WILL have those days in this place.

Every NICU story is different; they don’t all start or end the same. Remember that when you start to compare. Then, stop. Your story with your baby (or babies) is yours. No one else’s. Your ups and downs will look different. Your ups might be someone else’s downs. Your downs might be someone else’s ups.

I remember sitting on my phone in my son’s care-space scrolling through Pinterest looking for blogs that would tell me how to get through this. Something that would make me feel like it would be okay on the days that felt so far from it.

So, I am here for you now, Mama. It’s going to be okay.

If your baby was born early, you didn’t do anything wrong. Your body did not fail. You are not less than because you didn’t carry to term or because your pregnancy didn’t agree with you.

If you are here because your baby has genetic anomalies or medical issues, you did not do anything wrong. You are not being punished. You are now among the lucky few (myself included) who will get to experience the deep joy in parenting a complex child. Yes, it will be hard, but just like this NICU stay, you will have the strength to do it. It’s not what you envisioned, but it is going to be okay. More than okay. You will learn. You will grow. You will be shaped in ways you never imagined.

If I can give any practical advice it would be the following:

  • It’s okay to admit that this sucks. You didn’t get the birth or the newborn experience you dreamed of. You can cry and be angry.
  • Get primary nurses. If you and your baby connect with a nurse, ask her to be your primary. She will then get to take care of your baby every shift she works until you are discharged. This continuity of care will be so important. She will know your baby which means she will pick up on slight changes others might miss potentially catching problems before they become problems. She will become family to you guys. You’ll feel at ease when you walk into the care space and see her face. It will be easier to leave to take a walk, eat, shower, and sleep when you know the person caring for your baby. Ask for as many primaries as your hospital allows.
  • Don’t feel guilty for leaving. This is one I struggled with, and over a year later, I still struggle with. I wonder if I spent enough time in the NICU every day. I wonder if I was selfish for sleeping in some mornings or taking a longer lunch to meet with friends. Your heart will betray you on this one. It will always feel wrong to leave your baby, but you need to do it to be able to keep going. You may get to the point where your nurses will more or less have to kick you out so you will take care of yourself. I did. It sucks feeling like a “part-time” mom, but this is only a season. It will pass, and until it does, you need to take care of yourself.
  • Don’t apologize. Whatever you need to survive this is okay. If you need space and to be alone with your baby, that is okay. If you need help keeping your house clean, getting meals delivered, lawn care, errands, etc, that is okay. Every family will be different in how they need to be cared for when they are in the NICU. Figure out what you need, and don’t apologize for needing it. Those needs may change depending on how long you are there, and that is okay too! Do not sacrifice what little energy you have catering to other people’s view of what help should look like. Your only concern is you and your baby right now. Be honest about what you guys want/need during this time.
  • Find ways to make your baby’s care space feel more like home. Decorate as much as you are allowed. It’s these little things that will make you feel somewhat normal. Bring a blanket and pillow from home for yourself. You’ll need to nap, so you might as well be comfortable.
  • It is more than okay to become a “germaphobe.” Your tiny baby hasn’t developed the immune system that other babies have. People may have a hard time understanding this, but stand your ground. Depending on when you go home, you will more than likely need some form of isolation to keep your baby safe. Be selective about who you have come over. Be the “crazy mom” who makes everyone wash their hands to the elbows for two minutes before touching any surface in your house. Be the mom who doesn’t let others hold your baby for a while. It’s okay! That time will come.
  • Speaking of holding. It’s okay to be selfish with your baby. Hold him/her as much as you can, and don’t feel obligated to share. The NICU experience robs you of so many of those newborn snuggles. It’s okay to make up for lost time and not share for a while.
  • Find your silver-linings. Every day, find three things to be thankful for. Did your baby make a cute noise? Did your baby take his/her first PO feed? Did your baby go more than an hour without a desat? No victory is too small to celebrate. Some days, it might feel harder to come up with three than others, but I know you can do it. Even if you just sit in the fact that you guys all made it through one more day, that is enough.
  • Ask your nurses what supports your hospital has for families. Think about which of these supports feels like your style, and use it!
  • Get on Facebook groups for families like yours. Online support groups are such a gift when you are trapped in the hospital. There will be strangers who “get” your situation more than your closest family and friends. You need those people. And they need you!
  • Be honest about how you are doing. PPA, PPD, and PTSD are so common in NICU moms and dads. Take care of yourself so you can take care of your little one. There is no shame in asking for help.
  • Don’t forget that you are a good mom–wait, the BEST mom. It looks different than you expected, but you were made to be this little person’s mama. You can do this.

I am cheering you and your little one on. You are a warrior, Mama.

Making in the Breaking

Medical Updates

Today was supposed to be Evan’s birthday party. He had a custom onesie. We had balloons. We had banners. A menu planned. There was going to be a photo booth. It would have been the most “extra” first birthday party ever. Because Evan is extra. And extraordinary. His first year was so hard. He experienced more than most people experience in the lifetime. He fought hard. He was a warrior.

But today is not Evan’s birthday party. Our little celebration just the three of us will have to suffice this year. And it will suffice.

We were off isolation. It was great. We were still so careful. Choosy about where we went, what time of day we went, who could get close to him. Still no one really touched him. But then we found out that our sweet Evan’s most recent blood-work showed that his little body does not have an immune system. And this isn’t the all preemie babies type of weak immune system. This is the oh-hey-it’s-a-miracle-you’re-not-deathly-ill kind of weak immune system. So it’s back to heavy isolation most likely until next summer. It’s a great thing I am not super extroverted.

We are being referred to John’s Hopkins for immunology before we start IVIG (immune replacement therapy). This treatment is a lot like chemotherapy in how it is administered. Evan will go to the infusion center every three weeks to get an IV placed which will then infuse the immunoglobulin IgG (a blood product) into his body for about 4-6 hours. We are, of course, not thrilled that this is what we will have to do, but Lord are we thankful that there is a treatment for this! As we face every little thing with Evan, I am consistently blown away by the miracle of modern medicine.

That’s our biggest news of late, but I know it’s been a while since I updated y’all on Evan’s health, so I will give you some highlights.

  • The helmet is going really well! It is doing it’s job, and he is tolerating it so well now. He doesn’t even notice its there most of the time.
  • Eye surgery was officially a success. He hasn’t had any issues.
  • Some more genetic testing ruled out a huge list of potential diagnoses possibly bringing us a little closer to a diagnosis, but maybe not, and that’s okay.
  • He passed his car seat test back in April, so he now rides like a big boy! That was such a big milestone for us.
  • Breathing is seeming to improve, but his body is just asked to do so much every day. It’s going to take a while to get to a place of not needing O2, but he is making progress. He can tolerate room air trials throughout the day. He definitely still needs it at night and in the car.
  • PT and ST are going great. Evan is getting closer and closer to being able to hold up his head every day. He has also tried a few more tastes of food, and we are working on being able to drink water from a sippy cup.
  • We will start OT this month to help with sensory issues and fine motor skills. I am really excited for this.
  • He is growing! We finally broke through to 19 lbs this week after some calorie adjusting. He’s still not on the charts for height, but he has cute little arms and legs, so I don’t care.
  • We have been cleared by neurosurgery for now which is so awesome. His MRI from this week showed that the extra fluid in his brain isn’t causing pressure. Also I love seeing his scans because I think his brain is so cute.
  • We still have a pericardial effusion, so he is staying on lasix. At this point the cause is most likely from whatever is going on genetically.

How We’re Doing…Really

In my last post, I wrote about John 9 where Jesus explains that these things do not happen for no reason, they happen so that His mighty works would be revealed. I fully believe that, even in my moments of hurting.

Last night, I texted some of the close friends just to rant about how tired I was and how I just was feeling defeated. It is so important to have people you can go to and be real about your feelings with no shame involved. They don’t spit religious platitudes back at me invalidating my feelings. They listen. They love. They encourage. Find your people. Find the people you can go to when you’re hurt and broken.

This week has felt like a year. I am exhausted and my body just hurts. We had two blood draws, an MRI, lots of phone calls with insurance, doctor’s offices, and Social Services, a drive to and from UVA, and a helmet fitting. Oh, and this guy is being a terrible sleeper, so I’ve been up multiple hours every night. Last night, I was just so spent. I felt like I wasn’t measuring up to the roles I have to play each day. I realize that I am not “just a mom.” On any given day, I am also a nurse, a respiratory therapist, a physical therapist, a speech therapist, an occupational therapist, a master scheduler, an insurance advocate, a social worker, a realtor (we’re looking for a house that will suit Evan’s needs), a body guard, a medical transport specialist, and the list goes on. I barely have enough left in me and the end of most days to be a good wife, daughter, or friend. It’s all enough to break a person.

And I am broken.

But. God.

I would be foolish to think for one second that God is not working in this hard season. I will not for one second believe that God has forsaken us. There is too much evidence to the contrary.

We enjoyed some “normalcy” in May being out of isolation for a couple weeks. Then last weekend, we were told that it would just be that. A couple weeks. A tiny taste. A tease really. I let myself feel broken and sad about it for a day. And then God moved.

My dear friend, Melinda, released her first single “Sweeter” on Monday. I remember waiting for this single to release for so long! I kept thinking, “okay, but why do we have to wait until June?” Now I know. I needed the freshness of this song in my life at just the right moment. I needed to be reminded that He would make a way for joy and goodness in my loneliness. So to the mom who just found out she would need to stay in the house away from people until next year, God spoke these words through Melinda:

“Every moment gets sweeter by the minute whenever I’m alone with you. You take brokenness and blend grace within it. I’m so amazed by what you do.”

Ummm. Okay, God. I see what you did there. If I did not have to spend all this time in isolation with my child, I would not experience the intimacy with Christ I’ve felt amidst the deafening silence of my loneliness. And y’all, it really is sweet.

If Evan had not been born premature with medical issues, I would not have met the nurses and therapists who not only took care of us when we needed it most, but also became close friends and mentors. We would not have moved to Roanoke. We would not have joined the church family that has blessed us so dearly. Our marriage would not be as strong as it is.

If I hadn’t had to face the heart-breaking reality of almost losing my son more times than I can count, I would not have the appreciation for the Cross that I do now. God allowed His Son to die on a cross for MY sin. To reconcile my heart to his. He did this for us. I would not wish this perspective on anyone, but I am finding myself grateful for it.

I am learning that faith is not about being focused on our outcomes. We are not guaranteed anything in this life. We are not owed anything. We’re the ones with the debt! But God is faithful and good regardless of what we are facing.

This life we are leading is hard, and it is more than we expected.

More exhausting. More hard work. More heartbreaking. More frustrating.

But–It is also more joyful. More life-giving. More refining. More awe-inspiring. More of Him.

There is making in the breaking. Our feelings will often shout so loud that we can’t hear the tender whispers of Jesus beckoning us to turn to Him. But if we listen close, he is saying:

I am making a new thing. I am here. I hear your cries. I ask you to trust Me. I will take your shattered pieces and breathe new life into them. Into you.

Whatever brokenness you are facing today, know that this is not the end of your story. God is still working even when He feels far. He is making something new and beautiful. Because He loves you.