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.”
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.
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.
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.
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.”
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?
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 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.
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.
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!
This is the first question people ask of God when something doesn’t go according to the plan. You lose a job. Your marriage falls apart. You lose a loved one. You receive a diagnosis you weren’t expecting. You lose a child. You can’t conceive a child. The list goes on.
We ask why. Why me? Why did this happen? What did I do to deserve this?
In John 9, Jesus answers that question for all of us. He and His disciples come upon a man blind from birth. The first question asked is “Rabbi, who sinned, this man or his parents, that he was born blind?” Immediately, this thought that all of our circumstances come out of decisions we make or our sins comes to question. Jesus answers simply, “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.” That it, y’all. That’s the point. God is working things together that His glory and goodness might be displayed.
I think when we focus on this “why,” we are shifting our focus onto self rather than our Creator. We are saying that we are better than our circumstances. This shouldn’t happen to me. Maybe someone else, but not me. We cheat ourselves in thinking that our circumstances come from how “good” of a person we are or what we have done for the Lord. It’s not about that. And that is not to say that striving to be like Jesus and be for His Kingdom is futile. But we do not do so wholeheartedly if our aim is for reward. And I think our motives come into light when we sit and ask, “why?” when things go wrong. It’s really saying, “Where is my reward?”
Focusing on why, takes our focus away from the true why, if that makes sense. I have had so many people look at us with pity and some have even said “I don’t know why this happens” or “I am sorry this happened to you/your son.” I am here to squash that method of thinking. My son is here just the way he is ON PURPOSE, FOR A PURPOSE. He is fearfully and wonderfully made in the image of his Creator ‘so that the works of God might be displayed in him.’
I will not ask God why Evan is the way he is. I know why. Evan was created for a purpose grander than we could have ever imagined for him. His life brings glory back to God. His struggles and his triumphs display God’s goodness and faithfulness. He has been created perfectly for his true purpose on this Earth. I have no doubt that Evan’s life and his story will bring people to Christ. It may have already done so. I know we have experienced more intimacy with the Lord than ever before through this past year. For that, I am eternally grateful.
The story in John 9 goes on to show Jesus spit in the dirt and rub it on the blind man’s eyes to give him his sight back. In this time, a blind beggar would most certainly have experienced people spitting in the dirt around him to show their contempt for him. So when Jesus chooses this way to heal him, I think it is significant. Our road to redemption is often messy. The hard things placed before us can shout the lie to us that we are not worthy. Jesus’s spit doesn’t say “you are not worthy,” his says, “I make you worthy.”
I challenge you (and myself) to choose to see His goodness in your circumstances. To stop asking “why me” and focus on Him. To stop thinking that doing good in this world will gain you favor and an easy life. To remember that faith doesn’t say “what if” it says, “even if.” To rest your heart in His truth rather than the lies your circumstances bring to the surface.
You are loved. You are chosen. You are worthy in His sight.
*Featured image credit goes to Ashley Powell Photography*
First, I want to say how fun it was to hear questions from you all! I am excited to answer them for you so you can get a better look into Evan’s wonderful little life! I think after this post, I would love to just add on to every post from here on out with answers to anything y’all ask in between! That way, you don’t have to wait over a week for an answer when I choose sleep and snuggles over writing.
What illness does Evan suffer from?
Well, the short answer is “I don’t know.” The long(ish) answer is we’ve done some genetic testing so far, and it has all come back normal. However, we’ve learned that genetic testing is so much more complex than we could have imagined, so it may take a while before we can truly figure it out. There is one test that is newer called an Xome study, but we would need more clinical information (concrete diagnoses) before we can do it or we could get a false negative. We are also scheduled to go to John’s Hopkins this summer to see a genetic specialist to determine if he has a rare form of skeletal dysplasia (there are over 400 different kinds). So for now, we don’t know. And honestly, we may never know. And that’s okay. I will just keep calling it Evan Norton Syndrome where the biggest symptom is being the cutest and most precious child in the world.
Will Evan outgrow all of his medical needs?
Yes. And no. And I don’t know. Yes, he will very likely outgrow is breathing issues. Yes, he will very likely eat by mouth one day for all of his nutrition and hydration. No, he will not outgrow whatever his genetic condition is; you can’t outgrow genetics. And a whole lot of I don’t know. His hypotonia is pretty severe seeing as he is almost ten months old, and this week I witnessed a three week old kicking his butt in tummy time. But to be fair, I think that baby is just super advanced. So as far as his motor skills, I would say he’s a giant question mark. But we believe he will walk and play and be the awesome person he was made to be just in his own time! We run on Evan’s time for everything here!
Have you had a chance to meet/talk with other families with needs like Evan’s?
Yes! And we are so grateful! There are so many online communities available to parents of medically complex kids. We also have made good friends with one of Evan’s NICU nurses, Martha, whose kids have similar needs to Evan’s. She has been one of our best resources and supports. We also have a group where we live that meets once a month. I can’t wait to go when we’re off isolation and maybe (hopefully) a little better rested.
What are some things you are looking forward to seeing Evan do and experience in the next year?
Oh, so many things! What a loaded question! I am looking forward to him gaining more motor skills so he can better experience the world around him. I am looking forward to his first birthday which feels so close. I am looking forward to him meeting his little friends he talks to through Facetime, Marco Polo, and videos in texts. I really want to take him to the aquarium when we go to John’s Hopkins, but I am also super nervous about being in a crowd like that with him. But, its far away still, so plenty of time to get used to the idea! We’re also excited, and nervous, to take Evan to church for the first time this spring. It’s a big crowd, and it will be loud, so I don’t know how it will go, but we will sneak in the back and probably sneak out too. I am also excited for a day when I can run errands with him! I am very tired of this isolation gig, and I think the fact that I can see the light at the end of the tunnel is making it worse. Oh well! I know I’ll miss these days of snuggles and playing at home one day, so I shouldn’t wish it away. I am also very, very, very excited for life with no MRSA eyeball.
What do you need for Evan (in terms of items that can help with his development)?
We have a lot, but I am sure there’s always something! Several people have asked for specifics on this one, so Alex and I are working on what would be our “wish list” for little E. Sometimes we don’t know what we need until we need it.
Do you feel like you have community?
Yes! Our NICU/PEDS family has been amazing for us. We’ve kept in contact with pretty much everyone from the NICU, and Evan’s primaries have become my best friends. It’s been such a sweet blessing that came out of such a hard time in our lives. We’re really excited to be able to truly dive into a new church community this summer too. We’ve had so much support from family, friends, and even strangers throughout our journey. It’s so amazing to see how the Lord moves and shows us His provision when we need it most. Now, I will say that sometimes I do get lonely and feel forgotten or misunderstood as a mom. But I know that most of that is my own insecurities and lies I let myself believe. Overall, in most hours of most days, I feel incredibly blessed and loved. There’s nothing sweeter than watching other people love your kid.
Before Evan, did you or Alex have any medical experience or training?
Yes and no. Alex is a certified EMT, so he has had a lot of experience running calls on the ambulance. I, however, have no training other than what Grey’s Anatomy has offered me. That show seriously misrepresents premature babies and their appropriate care, by the way. Alex has a lot more confidence than I did at the beginning when we were still in the NICU. I was always so afraid I would hurt Evan. Learning Evan’s stuff has actually been super easy though. We had amazing nurses in the NICU too who really made sure we were prepared for everything long before it would happen. I also really like to fully understand what is going on with him, so I ask a lot of questions and do my own reading (within reason). Side Note: Do not Google your kids’ symptoms or random diagnoses without specifics in mind, mamas! You will always come to the conclusion that your kid is dying. Information being so readily available is definitely a blessing and a curse. But, it is nice to get a deeper understanding when you have specifics to research. I get asked often in doctor’s offices if I was a nurse or they assume I worked in the medical field before staying home with Evan. My answer is always, “Nope! I am just Evan’s mama.” My fellow special needs moms out there can definitely relate, I’m sure! Oh, and I used to be so queasy around blood and needles, but after watching your kid, who is a bleeder, get stuck about a thousand times, you get over it.
What kinds of therapies does Evan do?
Evan sees a speech therapist and a physical therapist each twice a month. They come to our house which is so nice because I don’t have to get out of my pajamas…seriously, I look like a dumpster fire every time they come. Speech therapy is focused on getting Evan to eat by mouth. We started with pacifier work, and we have moved up to spoon feeding! Evan has a very weak swallow reflex, so that has made it difficult to do liquids from a bottle. His suck pattern is also inefficient. Since he is almost ten months now, our plan is to bypass bottle feeding and move on to baby foods then hopefully work towards taking liquid from a sippy cup! He has been doing surprisingly well with the baby food. Today, he ate 1.5 teaspoons of apple at one of his feeds! He takes very small bites, so a goal is to get him comfortable accepting and handling more in his mouth at one time without getting overwhelmed and choking. With physical therapy our goals are mostly centered around reaching milestones and working on his poor flat head since the helmet hasn’t worked out for us yet. We do stretching to move his head to the right. We lay him on his right side to get him more aware of that side of his body. We assist him in rolling over from back to belly and back again. We do a lot of tummy time to work on his head control. At one point early on, and even still now, we do massage and light joint compression to get him to accept touch and not get overwhelmed by it. It also helps him be more aware of his body. Essentially, he has to learn that he has hands, feet, arms, and legs that can do things if he wants them to. Since Evan has pretty severe hypotonia, he will need to work a lot harder than other kids to reach even the simplest milestones which makes it so much sweeter when he makes any progress. We don’t take any of it for granted. Also, I feel like it is important to mention just how much we LOVE our therapists. Every single one we have worked with in-patient and out has been amazing.
What’s your Starbucks order?
This one makes me laugh. Y’all know I love (and need) my coffee! It all depends on my mood! My go-to’s include: iced coffee with cream and vanilla, a pumpkin spice latte (because I am a basic white girl), a vanilla latte (hot or iced depending on the weather), a latte with two pumps of vanilla and two pumps of cinnamon dolce (it tastes like a snickerdoodle), a hot white chocolate mocha, or an iced caramel macchiato. When I was dairy free when I was still pumping for Evan, I would get a cold brew with one pump of vanilla and a splash of almond milk. I also get bacon, egg, and gouda breakfast sandwiches, bacon sous vide egg bites, and chocolate croissants. Wow, seeing that all typed out makes me feel kind of gross but also kind of thirsty/hungry.
What color are Evan’s eyes/hair?
Both are light brown! He’s very handsome.
Why does him being upright (like in a carseat) cause him to have a hard time breathing?
A lot of preemie babies are very positional with their breathing, meaning they can breathe more easily when their necks (airways) are straight. When a baby is in a car seat, especially before head control is in play, his/her chin comes down to the chest. This causes the airway to become more narrow (I think?), so it it harder to breathe. Evan’s airway is so temperamental. In the NICU, we would have to change the way we were holding him often or some days not hold him because his breathing couldn’t take it. He breathes best when he is on his belly since his neck is extended, but he also hates being on his belly. Luckily, he is getting better! We are actually going to try to car seat test soon to get him into a regular seat again! Goodbye, giant cooler!
Do you see your family staying in Roanoke for a while?
Yes. 100% yes. Just the thought of changing his care team if we were to move makes me queasy. Right now, he has a team of about 20 doctors and therapists who see him. We love them, and we trust them. We do not want to leave them…ever.
What is he allergic to?
Milk protein and his old helmet! The verdict is still out on his new helmet. We got it yesterday.
What size clothes is he in right now? And is getting him dressed harder with all of his tubes and wires?
He wears 6 month clothes currently, but I think he might be in 9 month by the end of March or early in April! He is due for a growth spurt. Getting him dressed is just different. Not harder. We have to feed his feeding tube and pulse ox wire through his onesie, and we always have to go feet first with them because of his cannula. We are very thankful for the way onesies are made! With sleepers, he can’t do ones that zip up unless we were to cut holes in them for his feeding tube and pulse ox. In the NICU we could get away with his cords coming out the top for two reasons: he was almost completely immobile and he was monitored 24/7 by machines and nurses. Oh, and he needs mittens always now because he won’t leave his cannula alone! We found some that have velcro so we can tighten them to stay on! Goumikids is the brand–highly recommend! I really just want every product they sell in Evan’s size.
How has your faith grown since becoming a mom, and what scripture have you found you’ve been clinging to?
In the NICU, Psalm 61: 1-3 was my constant prayer and even now, I go back to it so often. “Here my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy.” Being Evan’s mom has made me lean on Jesus more than I have in my entire life. I think of Job too; he experienced so much suffering and loss, and at the end of it, he was grateful. He said “My ears had heard of you, but now my eyes have seen you.” (Job 42:5). I remember talking about this verse in a campaigners lesson I gave when I was a Young Life leader. It still stands so true. In the pit of despair, that is when we are most aware of our need for God. That is why we can be grateful in suffering. We are given a unique chance to have an intimacy with the Father we never would have found in different circumstances. We are given the opportunity to truly trust Him fully and surrender to His will. I love my God for who He was yesterday, who He is today, and who He will remain to be tomorrow. He is GOOD. Always. I could probably talk about this question for days.
How do you care for yourself in this season of constantly caring for Evan?
I just chuckled at this one. I am still figuring it out. And, I think, depending on the day, “self-care” looks different. Some days its giving myself the grace to look like a human piece of garbage in public and not care. Some days it’s drinking a lot of coffee (okay, most days). Some days it’s taking five more minutes to just stand in the hot water in the shower. Some days it’s actually taking a shower. Some days it’s taking a nap when Alex gets home from work or sleeping in on the weekend. I’ve gotten two pedicures since Evan was born too. My feet wish that number was higher. And some amazing friends and family have gotten me gift certificates to my favorite place for facials and massages! I also think caring for myself is in making time for Jesus every day which is my Lenten goal! I can so easily find excuses to not make time for scripture and truth and prayer in my days. But this Lenten season, I am going to call myself out on my crap and not make excuses. When I lean into the Father, I am a better mom, wife, sister, daughter, friend. I owe it to the ones I love to be in tune with the Spirit.
How has parenthood affected your marriage?
Honestly, it has made me love him so much more. Obviously, there are times when we get frustrated with the other–usually due to lack of sleep, caffeine, or proper nutrition (usually all the above). But that’s normal marriage I would say. No relationship is perfect. Entering into parenthood is stressful. Entering into it under the circumstances we did was, well, I don’t think there’s a word that would suffice. I would equate it to expecting a light breeze and stepping outside right into a tornado. It’s been hard, but it’s been good. Watching Alex love Evan is probably my favorite thing in the world. Watching him fight for and advocate for him is incredible. I am so lucky to have him as my parenting partner. When one of us is having a particularly hard day, the other (usually) just picks up the slack without even being asked. We always say, “We are a team.” Sometimes we say it just to reassure the other person that they are doing a good job, and it’s okay to have an off day or be tired or frustrated or need a break. Parenting has forced us to be more honest with each other about where we are emotionally too. We know we can’t be our best for Evan when we are spent, so we need to rely each other more in those moments.
Has Evan’s personality started to come out?
I would say it’s always been evident that he is dramatic and stubborn. In the NICU, he would hold his breath to get attention or make someone go away if they were trying to get him to do anything that required work (we’re sorry, Sam!). When Evan says no, he says it loudly. But I do think he is getting more aware of the world, so he’s just more fun! He laughs when we tickle him. He flirts (always!) with his girlfriends when they come to see him. He looks so pleased with himself when he does certain things (mainly pooping). He loves music, and now that we have confirmed that he can hear in at least one ear, I know I’m not making that up. He hates napping and usually only does it for his daddy. He doesn’t like to be alone. He hates his helmet (old and new). When he wakes up in the morning, he demands attention. His newest love is this little blue elephant stuffed animal with a bell in it that jingles. He thinks that thing is hilarious. So yes, he has a big personality, and it’s amazing. It just keeps getting better.
What’s in your diaper bag?
This one requires pictures. I love that this was asked. I wouldn’t have ever thought to share about our diaper bag on here. Our diaper bag isn’t actually a diaper bag; its an EMS medical bag. It is large and heavy and not at all like the cutesy ones we got from our registry.
So our “diaper bag” isn’t really a diaper bag and doesn’t all fit in one bag. But, we’ve got a good system that works for us. Just realizing I completely forgot to add in his little backpack for his feeding pump! Duh, that’s so important. The kid’s gotta eat. Whoops.
What upcoming surgeries does Evan have?
Well, I’m glad you asked! He has surgery TOMORROW! Or today, depending on when you read this. March 8 at 7:15AM he undergoes surgery to correct his clogged lacrimal duct which is the reason for our chronic MRSA. They will also do a sedated eye exam to get a better idea of his vision and internal structures. Last week, ENT was able to piggy back onto our surgery, so they will do a sedated ear exam and most likely place tubes in at least one of his ears if not both! I am so thankful they were able to coordinate and make this happen. Please pray for peace for Evan’s mama and daddy as surgery is never fun. For energy for us (mostly me) since it’s 10:40 and Evan still has yet to go to sleep, and we have to be up at midnight and 3AM then leave the house at 4:30AM. Pray Evan goes to sleep soon if your reading this right after I post it. Pray for his doctors and nurses. Pray for no issues with intubation. For easily managed pain after surgery. For a clear call on whether or not we need to get admitted for a night. For easy recovery and success in all the things!
I really liked getting to hear from you guys for this blog post. Thank you for sharing in our story and our adventure with Evan. In the future, I’d love to just tack on questions and answers to the bottom of posts. So send them my way whenever you think of them! Also–If I missed your question in the midst of my sleep deprived mom brain trying to relocate them all this evening, please send it again! I’m sorry!
As I sit to write this post that I’ve had on my heart for months, I keep feeling like I shouldn’t. Mom envy is something every mother experiences at some point. It’s a nasty, ugly part of us, but we all have it. Because, well, sin. Duh. We are not perfect people who can be content in our circumstances at all times. We see what someone else has or doesn’t have, and we want that for ourselves because from the outside it may look better than the hand we’ve been dealt. All the while, that mom we envy so much may envy us. It’s an ugly cycle of lies we are made to believe about ourselves as women, as mothers, and as daughters of the King. We all do it, but I feel like we don’t talk about it.
James 5:16 calls us to confess our sins to one another so that we can adequately pray for each other. So I guess here is my confession. Here are the lies I let myself believe about our life. Here is my broken, sinful heart that compares my life to those I see around me.
I should first start with the disclaimer that I would goes without saying, but I will say it anyway. I love my son. I love my life. I truly do. I am so thankful for the adventure God has called us to in being Evan’s parents. In my eyes, he is the most perfect, sweetest baby. And because that is where my heart truly lies when my head is clear, I feel so guilty for the envious comparisons I make with the mothers I am surrounded by. That is what makes me feel like I shouldn’t put these words on a page, but I have been encouraged by a friend whose opinion I value and trust that this is a topic that really needs to be shared because even if the situations are different, all moms can resonate with the emotion behind it. I also feel like it’s near impossible to write about this topic without coming off like I am looking for sympathy. I want to be clear; I am not. I want to be understood, and I want my story to be known, but do not waste your energy feeling sorry for us. We have the most amazing kid in the world whose life brings us to the foot of the Cross daily….really, I feel sorry for all of you. Evan’s not yours.
I think my mom envy started long before I was even a mother–well, because I wasn’t a mother. I’ve wanted to be a mom for as long as I can remember. And all of a sudden it felt like everyone around me was getting pregnant. I was 26, married for a few years, financially stable, so the questions started. And they are meant to be innocent questions, but I know from my experience and from experiences others have shared with me about their journeys in infertility and miscarriage that those questions are anything but innocent. The intent behind may be, but they hurt. A lot. And looking back, I know I was one of those people “innocently” joking with a young married couple about when they would have kids. I hate myself for that. And I am sorry. For about a year before we started trying to have a baby, I was miserable because I wasn’t a mom. And because Satan likes to be a jerk and kick us while we are down, I was flooded daily with reminders that I was, in fact, NOT a mom. Students, coworkers, acquaintances would ask me “why” I didn’t have a baby yet or when I was going to “get on it.” My favorite would be “Well ______ just had a baby so it’s your turn now.” It wasn’t our time yet. We were still wading through the waters of grief from losing Alex’s sister to cancer. We were waiting to be more prepared financially. We were waiting for my health to improve so I could have the healthiest pregnancy possible (oh the irony). But it still hurt my heart every day that I wasn’t a mom. I can vividly remember about a dozen instances when I was told that I could never understand (fill in the blank) because “you’re not a mother.” And sure, that may have been true, but what a jerk thing to say to someone especially when you don’t know their situation. I recently saw an article or blog or something on Facebook titled something along the lines of “Everyone you meet is grieving.” That is such an important truth to remember. You just don’t know the hurt going on in a person’s heart. And to say things, even if they may be somewhat true, to a person like “you’re not a mother” or “why don’t you have kids?” is just sad. I have so many friends who have been through Hell with infertility, miscarriage, and infant loss. It’s tragic to a woman when she desperately wants to be what she feels in her heart she was made to be, and for whatever reason, she can’t. **I want to clarify that I do not in anyway think that if you have had a miscarriage or lost a child that you are any less of a mother. You had a child. It doesn’t matter how long he/she was able to stay. You are a mom. You will always be a mom.** Also, maybe I am still a little salty over this one.
In pregnancy I think I was too overwhelmed to really experience mom envy too much. Maybe I was jealous of people who didn’t throw up all the time. Or people who could be pregnant and still function as a responsible human. I think I was just miserable and gross, so I didn’t have the energy to have much mom envy. Maybe that’s the trick…? If I get even less sleep, I’ll be too tired to think or care? Sounds like it could work. Definitely not willing to try it though.
The NICU brought a lot of comparison for me. Birth brought a lot of comparison for me. In some ways, I feel like I missed out on something because I had a somewhat scheduled C-section and never experienced true active labor, or my water breaking, or birthing a human. From what I hear, I didn’t miss much. I wrote in a previous post about missing out on that first moment of seeing your baby, falling in love, and immediately getting to snuggle or kiss him. Today I read a birth story from another mom who had the sweetest moment with her son. I read it, and I was so happy for her. But it also made me remember that I didn’t get that, and there’s no take backs. (Fun fact, it is possible to be happy for others and sad for yourself at the same time.) Obviously, Evan’s health and well-being trumped any kind of expectation of that moment, but I still miss it. I didn’t even hold him until two days later, and it was with help and a lot of finagling of cords and tubes, and it didn’t last long as it ended in Evan not breathing. There were things I took for granted in my mind when I was pregnant. We aren’t guaranteed anything. I had even come to terms before delivery that I wasn’t guaranteed my baby would live. But I still took for granted what it would mean to hold my son or even touch him or kiss him. I didn’t kiss him for the first time until he was two weeks old I think. And after that, I didn’t kiss him often at all. Not because I wasn’t connected with him or because I didn’t love him, but because I loved him so much I was afraid to do anything to harm him. It wasn’t until recently that I truly got comfortable giving him all the kisses like “regular” mamas do. These little things that I didn’t even think about before he was born became the biggest things.
Maybe this post should really be more about the things I took for granted that led to my mom envy. I think a lot of that jealously stems from other moms getting to do things I took for granted in my mind or expected before Evan was born. So organization be darned, I am going to continue this post in list format. The English teacher in me wants to throw up all over this post.
Checking on my newborn in the middle of the night. For me, that meant calling the NICU to talk to his night nurse instead of looking at a baby monitor or popping my head in the bassinet to look at him. I couldn’t see him. He was 40 minutes and 14 floors away. I hated the feeling that I still wasn’t completely a mom. I mean, I was only doing it part-time in so many ways. At least, that’s the lie I would tell myself.
Holding my child. I’ve talked about this before, and I am sure if you know a NICU family or you are one you get it. Holding Evan was sometimes not possible. I would have to put him back because he wasn’t breathing, or he had difficult equipment at the time, or he just couldn’t tolerate being touched that day. It was heartbreaking. I now find myself sometimes whining about how my back or arms hurt because he has days where he won’t let me put him down, but then I have to remind myself how much of a gift that is. How for so many months I dreamed of holding him as much as I wanted. I would see pictures of other moms toting their babies around wherever they went in wraps and carriers, and I was jealous. When we got home, as tired as I was, I loved (and kind of miss sometimes) the nights where Evan would only sleep if he was being held. He needed ME. So my arms could hurt, my back could hurt, my brain could become mush from being so sleep deprived. My son needed me to hold him, and I could finally do it.
Nursing. My shortest lived mom envy. Didn’t do it. Couldn’t do it. Felt really guilty and like a failure for it for a while. Realized that was dumb, and it didn’t matter how my baby was fed or what he was fed. Props to all the moms out there who can nurse their babies or pump for their babies and it goes well. That’s great. But it’s also great to be physically and emotionally healthy for your child and for your child to get the nutrition he needs, and sometimes those things can’t happen if you try to nurse or pump for your kid. I feel like we are bombarded mostly due to social media these days with the message that if you don’t breastfeed, you are not a good mom or giving your child what’s best for him. That is a LIE. And to the moms out there struggling with this…guess what? IT’S OKAY. You do what you need to do for you and your babe to be happy and healthy. And don’t you dare feel an ounce of guilt over it.
Feeding my child. Evan doesn’t eat anything by mouth. He’s never filled his little belly from a bottle. He has tried it. He has swallowed 5mLs on his best day (that’s roughly a teaspoon). And that takes a lot of time and hard work on his part. Evan is nine and a half months old, and he just started tasting baby foods to see how he would handle it. He does not actually “eat” enough to be any kind of substantial nutrition. He may swallow a tiny bit, but the experience is more about engaging his oral skills and him coordinating those skills to learn to eat the food. It’s also about tolerating a spoon in his mouth. It’s also about tolerating something other than spit in his mouth, and let’s be honest, he doesn’t even tolerate that sometimes. The feeding pump and his G-tube are lifesavers…literally. Evan would die without them. But it’s hard sometimes when I see other kiddos trying foods or eating and becoming covered in something. I remember telling our speech therapist that I was sad that it felt like we would miss out on the cute pictures of our baby covered in food from trying to feed himself or smearing the food on his face from thrashing away from the spoon. The day he tasted something for the first time was magical. The day I got to go into Target with BABY FOOD on my shopping list was magical. I knew that 98% of it would end up in the trash because Evan wasn’t really eating-eating it, but I got to buy baby food! I think the feeding stuff is actually making me more grateful than envious because every little thing about it feels like winning the lottery. Also–tube feeding has made our lives easier in a lot of ways. Evan is on about a hundred medications it feels like, so not having to make him take them all by mouth is kind of awesome. I can give him meds while he’s sleeping. He can eat while he’s sleeping. In fact, he’s eating right now, and he will keep eating until 6AM. I think any envy that comes out of this topic comes more when someone who doesn’t know or understand Evan’s feeding journey makes a comment about his eating that would only make sense if his feeding journey was that of a typical nine month old. It’s completely different. It will be for a long time, maybe forever. And that’s okay. But I can hate little things about it. I am a human after all. I hate the beeping the pump will do for seemingly no reason at times. I hate that there have been nights where Evan’s bed ate more than he did because something popped open that shouldn’t have. I hate that parts of my house have a lingering Nutramigen (his formula) stink from all the times I have spilled it when pouring it into the bag. I hate that stomach contents have exploded into my face when venting his tube. I hate that he is really good at popping it open when not in use and leaking stomach juices all over the place. I hate that a feed involves cleaning the bag, measuring the formula, pouring it into the bag, priming the line, programming the pump, and that’s all after making sure Evan’s G-tube has been adequately vented and his extension set is also cleaned and primed. It’s tedious. So easy…but tedious. And not super convenient on the go. I’ve started scheduling his doctor’s appointments so I can avoid having to feed him while out. Fewer accessories makes for easier travel. So sure, I hate a lot of things about it, but I owe his life to it, and if I’m being honest, a lot of the things I hate I also laugh at.
Picking my baby up in the middle of the night when he’s fussing. When I do this, I am also making sure I am not stepping on or tangling cords and tubes. There have been nights where I have cried thinking about how I can’t just pick him up without first thinking of these cords or carry him into another room. In fact, there are rooms in our house he can’t reach unless he is put on a portable oxygen tank and disconnected from his pulse ox. The feeding pump could wheel along next to us on his pole. I am jealous at times of the moms who can do this without a second thought. I cannot wait for a day when we are tube and cord free. Heck, I would settle for just one fewer tube (oxygen, I’m lookin’ at you).
Isolation or not expecting isolation. This is where the majority of my mom envy probably lies. At least lately. I am getting a little stir crazy. If I am out by myself at Target or the grocery store, I often see moms and their littles. Sometimes tiny babies like Evan. And all I can think about are the thousands of germs that baby is getting exposed to. But then I remember that not all babies are immunocompromised like a preemie and kind of a wimp like Evan. I am jealous of people who can go to a coffee shop to meet a friend with their baby in tow. I am jealous of people who don’t have to carefully consider if the person they are seeing is sick, has been sick, or has been near anyone who has been sick and then sacrifice a social engagement if so. I am jealous of people who feel comfortable letting other people come into their house without making sure vaccinations are up to date and that person hasn’t had so much as a sniffle in at least two weeks. I am jealous of people who are comfortable with and excited for other people to touch and hold their child. I know I’ll get there eventually, but the NICU and five more hospital admissions have done a number on us. I don’t want to live in constant fear of Evan getting sick. But I’ve seen what a tiny cold can do to him. I know what something like RSV or the flu could do to him. And how do I cope with watching my tiny baby who physically can’t throw up dry heaving because he has a stomach bug and can’t get relief? I will talk more about isolation in my next post though, as I feel it is so important for people to truly understand. So I will stop here for tonight.
Milestones. I know Evan runs on Evan’s time, and I am so proud of the progress he is making. He is getting closer to being able to hold his head up every day now after months of little to no progress. So my “envy” here isn’t really about him not meeting the milestones he “should” be, but more about what I think other people think of us because he hasn’t. I worry all the time that people see that he can’t do a lot of things yet and wonder what we are doing wrong. I think about the unsolicited advice we get about him from people who know nothing about hypotonia or physical therapy for a preemie. So really my only worry here is that other moms, dads, random strangers even, think I am a bad mom because my kid can’t do at nine and a half months what most babies can do at two or three months. I guess I could even lump the helmet into this. We get comments from people about it being good that he was wearing his helmet because “you’re running out of time to fix his flat head” when they see him in it in a picture, but what they don’t see was him screaming like he was being tortured the whole time he was wearing it or the massive breakout of eczema and staph all over his head and face that followed. Like no, we are not just lazy. We do not have him lay on the ground all day letting his head get flatter and flatter. We do so much physical therapy work with him every single day to get him to turn his head the other way or maneuver him to put pressure on the other side of his head. And maybe this is all my own ridiculous insecurity. But I feel like I would judge me at least a little if I didn’t know our full story, so my guess is other people are too. Or maybe I am just more sinful than the people around me…likely.
I am sure I could find more ways that I have experienced “mom envy” in our parenting journey so far, but I have already written a tragically grammatically flawed and disorganized novel about my feelings, and I need to go to bed.
To my fellow mamas– if you leave this post with nothing else know this: you are who you are supposed to be for your child. You were handpicked by God to be his/her parent. Your child needs YOU. Not the mom down the street who “has it all together” (spoiler alert: she doesn’t). Not your mom or your mother-in-law. Not your best friend. Not the girl from high school who you still follow on Instagram whose kids are “perfect.” Not the know-it-all old lady in the Kroger parking lot. You kid needs YOU. Our parenting journeys all look different, and when we forget that it’s okay and good that they look different, it is so easy for that nasty envy to creep in. This is something I have to remind myself of daily, and I am lucky enough to have friends and a husband who help me keep that in check.
Thank you for reading along with our story. Thank you for being “in it” with us as we navigate these waters. Thank you to those who have prayed for us and for Evan throughout this journey.
Also–remember, you’re not supposed to feel sorry for us. So stop it if you are.
Please don’t forget to send me an email through the contact page if you have questions. If you’re worried your question might offend me, I promise it won’t! I threw it out there, so I am happy to answer anything I can for you all! I’ve gotten some questions already that I am excited to answer and some post topic requests as well!