Loving Vulnerable Families During COVID-19

So much has changed in the past two weeks since my last post. I don’t know if any of us (those without medical degrees at least) anticipated the intensity and length of this “social distancing” for the coronavirus.

I will admit: much of my last post came out of some angry places in my heart. I know many medically complex families have felt some of the same anger and frustration. After my post, I had a really hard week adjusting to the constantly changing information and guidelines regarding the coronavirus all while watching some of the people I know and love treat this virus like a joke or complain about the minor inconveniences this was causing them. And I think the heart of it is this: while the rest of the world seems to have each other in this time of “quarantine,” we (medically complex families) have never felt more unseen and alone.

Let me explain. My tiny family is currently on day 196 of isolation for the 2019-2020 cold/flu season. We are looking at heavy isolation continuing at least into June with even stricter guidelines than we’ve had before (ie. all clinic appointments being cancelled, losing home health nursing because of exposure risk, postponing lab work, etc.) Before that, we were in isolation for the first full year of Evan’s life. We have only really had a couple months of “freedom” in the past two years.

Most of America is on day 11. And I get it, it is HARD. But as I was talking with a dear friend the other day, I realized why I was frustrated more than anything: I felt like people’s actions were saying that my son’s life was worth less than their weekend plans, a 5K, a vacation, a night out, etc. I miss those things too sometimes. I miss the ability to run out to the grocery store or coffee shop without weighing the costs/benefits. I miss spontaneous road trips. I miss evenings with my friends. Heck, I even miss working sometimes. But I have something worth missing those things: Evan.

My favorite dancing partner.

Perspective.

That is what we all need during these uncertain times. And I am not talking about the “oh well, someone has it worse than me, so…” kind of perspective. I am talking about understanding our WHY. If we have a tight grasp on WHY we have to miss the things we love or have looked forward to, it is so much easier.

We are all in some form of isolation right now. So what is your why? More accurately, WHO is your why? Put a face, a name, a voice to what you are experiencing. If you don’t know someone personally (which I am pretty sure we all do), feel free to borrow my Evan.

joy.

The bigger picture is so critical to our approach to this season. John 15:13 says, “Greater love has no one than this, that he lay down his life for his friends” (NIV). Our sacrifices during this time are a picture of the gospel. We are laying our wants, our comforts, our routines aside for others’ safety.

We got dressed up and had ourselves a gala the other week!

Some friends have asked me to post about practical ways to love medically complex, special needs, or other vulnerable families during this season of coronavirus isolation. Here is a (not at all comprehensive) list of ways to serve and love these families well. *I would like to note that I came up with the majority of this list based on what people have already done for us in the past two weeks. We are so grateful for our community.

BE KIND.
  1. Choose your words carefully. Don’t tip-toe around these friends, but keep in mind that you are likely only experiencing a small taste of that their daily lives look like regardless of the coronavirus.
  2. Offer encouragement. Going along with the point above, share words of encouragement with these friends. Let them know that you are thinking of them and understand that this season is hard and scary. A friend recently reached out to me saying, “I know what we are doing is nothing compared to what you guys do all the time, but now I know how hard it can be. I have been thinking about you a lot.”
  3. Pray for them. I can almost guarantee that every medical mama I know is on her knees daily praying this virus will not reach her child. Join her. Pray with her. Pray for peace for her heart.
  4. Offer to run errands. So many people have offered to do this for us, and it has been such a gift. Evan needed a prescription last week, and a friend went and picked it up along with a few grocery items for us without hesitation.
  5. Bring them a meal. Some days medical-mommin’ is just too exhausting to even consider cooking dinner. Offer to bring dinner by one night (extra points if its take-out from a local small business!) If that’s too hard or too much for you, coffee also works. We always need coffee.
  6. Show up. Obviously, not at their houses. Be there for them digitally or through snail mail! These families likely rely on social media to connect already. Be there for them in this way. Ask how things are going. Ask what’s been hardest. Ask about the monotony of their days. Just be there and be a friend. It is so important. The other night I watched Frozen II on Zoom with five of my friends. It was ridiculous and awesome. I am in several Marco Polo conversations with friends. I use Instagram to connect with other mamas I haven’t even met face to face and probably never will, but they are some of the people I treasure most!
  7. Offer financial help if it’s needed. Many families of special needs or medically complex children are single income homes out of necessity. Evan, for instance, requires 24/7 attention and care that cannot be adequately done without one of us or a skilled and licensed nurse. I chose to stay home before we knew this, but now it is a necessity. We are okay financially, but many other families like us aren’t. Do what you can if you can. Some families may have been able to be dual income but now find themselves out of the job because the risk of bringing COVID-19 home to their child isn’t worth the paycheck.
  8. Stay home. Maybe I should have hash-tagged that. Second to prayer, this is the most important thing you can do for these families. When you say no to the get together with friends, the trip, the play date, the unnecessary grocery/Target run, you are protecting these vulnerable families. You are loving them well by staying where you are.

Like I said, it is not a comprehensive list. My medically complex friends out there, feel free to add your thoughts!

Stay safe, and remember: this will pass, and we will all get through it. Together.

Coronavirus: A Special Needs Mom’s Perspective

*Disclaimer: I am not a medical professional: just a mom who has learned a lot in two years of parenting a medically complex, immunocompromised child. Go to the CDC’s website to learn more about COVID-19 and how you can help your community through this outbreak.

A little background for those of you who are new to the blog:

Evan

Our son, Evan, is medically complex. He was born premature. His lungs are smaller than usual for a child his size. He has global developmental delays. He is oxygen dependent. He is exclusively tube-fed. He has seizures due to his abnormal brain anatomy and genetic diagnosis of RPL10 related disorder, a disorder that only a handful of people around the world have. He routinely chokes on his own spit requiring medical intervention to help him clear it and breathe again. He still has episodes of apnea in his sleep where he stops breathing. We take oxygen and a pulse oximeter with us everywhere we go. He is also immunocompromised. This is due to his prematurity, his genetic disorder, and his very low immunoglobulin counts in his blood. A common cold can and has sent our son to the hospital for an admission to the pediatric floor. He is severely hypotonic (low muscle tone), so he does not move near as much as a typical 22 month old. This makes it more likely for him to develop pneumonia secondary to any mild respiratory illness. He is among those most at risk for complications or death if he were to contract COVID-19.

Guess what? We are not freaking out. Because nothing has actually changed for us as a medically complex family. We are just adding COVID-19 to the list of dozens if not hundreds of viruses that could easily kill our son.

The way it seems all of America feels right now with the mass hysteria going on is how a medically complex mom feels every moment of every day. And the truth is, most of you have no reason to frantically run to the store to buy up every bottle of sanitizer, alcohol, or Lysol available.

Mass hysteria helps no one. But neither does ignorance, that is why I am in full support of the preventative and precautionary measures that are being taken at hospitals, schools, and other large institutions. Yes, the world cannot stop, but we can easily, by self-isolating, contain this virus and keep our loved ones healthy and alive.

On Supply Hoarding

Many special needs or medically complex families rely on common household cleaning and hygiene items to keep their children or loved ones alive. They use medical exam gloves to do trach changes. They use rubbing alcohol to clean injection sites or medical supplies. They use more hand soap and hand sanitizer than the average person because they need to wash their hands more often in order to prevent their children from getting sick and needing the hospital. They wear disposable face masks when they are worried they could be sick because they have to still take care of their fragile children. Their children wear masks when they have to go to the doctor’s office, which is often, because they cannot trust that everyone around them isn’t carrying germs.

Hoarding these items is actually making the situation worse for the most vulnerable to this and other respiratory viruses. It leaves children like Evan unable to be protected in the way they need to survive regardless of COVID-19.

Buy what you need, but no more than that.

I am mildly amused that certain items are flying off the shelves. Toilet paper: diarrhea isn’t a common symptom of COVID-19. Baby wipes as a replacement for toilet paper when they sell out: not flushable, friends. You’ll need to add plumbing services to your shopping list if you try that. Kleenex and tissues: stuffy nose and congestion are also not common symptoms of COVID-19. Allergy medicine: unless you’re allergic to COVID-19, this won’t help you either. Pedialyte: yes, if you’re sick stay hydrated, but water or Gatorade can do that too.

And for the love of all things, please stop stealing supplies from hospitals and doctor’s offices when you have no use for them other than your doomsday prepping. Our medical professionals need those items to keep themselves and their patients safe. If they don’t have the appropriate equipment, they cannot take care of you. It’s that simple.

On Ambulance and ER Abuse

If you think you have COVID-19, DO NOT call 911. DO NOT go to the ER. Stay home, and call your doctor. For a full list of what to do when sick, click here for the CDC’s recommendations.

Ambulances and the ER are EMERGENCY services. Do not abuse them if you are not in a true emergency. If ambulances are getting called for non-emergencies, they are not available for the true emergencies that arise. An ambulance is not a taxi to the doctor. An ambulance is not a doctor’s office. It is an EMERGENCY transport vehicle. Unless that is what you actually need, call an Uber. Or better yet, just stay home. Do not flood ERs because you think you may have come in contact with someone with the virus. If you actually did, you just exposed an entire waiting room of people and ER staff to it. Good job. You also shouldn’t be going to the ER if you have a cold or the flu unless you’re experiencing severe, life-threatening complications from it. All this ER abuse does is perpetuate and spread illness.

On Not Taking COVID-19 Seriously

As a mom who fears cold/flu season every year, I am not surprised by this behavior. If people actually got flu shots and treated cold/flu season with the respect it deserves, I am certain the death rate would dramatically decrease. With a virus where the vast majority of the public will experience just a couple days of discomfort, it makes sense that its being treated the same way many treat cold/flu season. We’re nearing the end, and it’s just now that people are buying sanitizer, hand soap, and disinfectant. It makes me wonder how many fewer cases we would have seen of the flu this year had people taken it as seriously as some are taking the coronavirus. It also makes me sad. Because these supplies are not being purchased by everyone. Not just due to lack of availability, but because there is a population of people who think this virus is no big deal because it wouldn’t be “a big deal” to them personally if they contracted it. This flippant disregard for others is why over 22,000 people have died from the flu this year (See the CDC Website). This flippant disregard for others is why hundreds of babies and toddlers die from RSV each year (See the CDC Website).

When the only attention you are giving this virus is your ability to click the Share button on a meme, you are part of the problem. Don’t get me wrong, I love a good meme, but we can laugh and still take this thing seriously. Don’t complain that schools are closed or you can’t go on that vacation you had planned. Because you’re not able to do those things, my kid and kids like him have a better chance at staying alive through this mess. When did we become so self-absorbed?

Along these lines, due to all the school and daycare closures, we need to come together in our local communities to support families who rely on these for food and child care. Many families do not have a place for their children to go with schools and daycare closing. Offer to babysit for free so moms and dads don’t lose their jobs. Bring a meal to a family who may rely on free lunches.

The fact that it is taking a global pandemic for people to consider practicing proper hand hygiene and appropriate social distancing is really sad. We need to do better. Our most fragile and vulnerable need us to do better. Evan needs us to do better.

So What Should I do?

It’s easy. Wash your hands. Live your life. Don’t touch people (especially babies, the elderly, and those who are immunocompromised) when you don’t need to. Stay home when you’re sick, and keep yourself away from large crowds where germs can spread easily. If we do this, we will keep this virus contained to what hospitals can handle for the cases that are severe.

To the healthy and the wealthy, be willing to be inconvenienced for the sake of others.

Practice compassion. Practice patience.

And follow the CDC’s guidelines for prevention. They are the experts, I am not.

If you are in Virginia and have questions about COVID-19, you can dial 211 to speak with someone at the Department of Health.

Ways to Survive Self-Quarantine

We have lived most of the past two years in isolation to keep our sweet boy safe and out of the hospital. It’s not that bad, y’all. You can easily survive two weeks or more of it. Here are some things to do:

  1. Read a book! If you need suggestions, ask me! I’ve been plowing through audiobooks with the Libby app!
  2. Binge watch Netflix, Hulu, or Disney+. There is a legitimate reason for you to hang out and do nothing at home, lean into it!
  3. Clean your house. Don’t just disinfect it. Catch up on laundry. Organize your pantry. Rearrange furniture. Do the house projects you’ve been putting off.
  4. Play and hang out with your family. We don’t do enough of this.
  5. Workout. There are plenty of free workout videos on the internet for you to find something you like. This helps when you get stir-crazy, I promise!
  6. Craft something!
  7. Do your taxes. April 15 is coming fast!
  8. Got kids? Go to this link for a comprehensive list of ideas.
    1. https://docs.google.com/document/u/0/d/1o6kEgCKLn3cyIm2hehhhSTIk7yRTd0C3zx49JS4wwCI

To the medical mamas out there, keep doing what you need to do to keep your babies healthy. You are all warriors.

A Rare and Precious Gem

For most of Evan’s little life, we have known one thing for sure: he is a marvelous mystery. The first question many people ask us (not always in these exact words) is, “What is his diagnosis?” To which, our answer has always been “We don’t know, but he sure is cute.”

It’s funny to me how much it has felt like the world has cared more about Evan’s diagnosis than we have. We often joke that everyone’s so worried about what his genetic syndrome is while we’re over here questioning where his blonde hair came from. I think it speaks a lot to the world we live in that everyone just wants answers and labels in order to make sense of what makes them uncomfortable or scares them. But does a name for something change what it is? Before you learned to read or speak, you knew what things were around you. You knew the sky. You knew the grass. You knew the wind. A label did not change what those things were.

So here I give you one of the mantras of today’s world: it is what it is. Evan is who he is: wholly, perfectly, and wonderfully made in the image of his Creator. His genetic diagnosis is not who he is. His medical needs are not who he is. His developmental delays are not who he is. His feeding tube is not who he is. His need for supplemental oxygen, a helmet, and ankle braces is not who he is. Who he is is this: a child of God.

That needed to be said before I could give you this information. It needed to be said because I, like so so many other special needs parents, have felt the hurt that comes with people only seeing my child as “what is wrong with him.” I stand firm in that there is NOTHING wrong with my child. God did not make a mistake when He created my sweet boy. He did not make a mistake when a tiny gene mutated from “the norm.” His body was made on purpose for a purpose.

Evan had his first genetic test when he was still growing in my belly. It was called an NIPT test. The doctors ran this test because we opted out of an amniocentesis due to the risks it would place on Evan. This simple blood test only tested for four things: gender, Trisomy 13, Trisomy 18, and Trisomy 21. We were pretty sure it was going to come back negative for all three chromosomal syndromes. It did. Of the few people who knew what was going on with our pregnancy, some thought that this meant Evan was “fine” and just a little small. We knew otherwise. We knew in our hearts that our boy was going to be different– that what the doctors were telling us was right. He was special– set apart.

When Evan was born, we got more genetic testing done while he was in the NICU. They did a chromosomal microarray panel and a micropthalmia panel. The first test looks for deletions or duplications of the chromosomes, abnormalities of the chromosomes, or changes in the structure of the chromosomes. This is kind of the first tier in genetic testing from my understanding. This is also where most of the general public’s knowledge of genetics stops. Evan’s chromosomal microarray came back normal. A micropthalmia panel looked at about 21 specific genes associated with the symptom micropthalmia (small eyes). This test also came back normal.

This meant that Evan’s genetic anomalies were likely caused by a deletion, mutation, or duplication of a very specific gene within one of his chromosomes. Testing for this is complicated when you don’t know what you are looking for. If a patient presents with classic symptoms of a particular genetic disorder, a doctor can test for that specific gene. However, when you have a patient like Evan with global delays and all systems affected, it is very difficult to try and pinpoint which genes to test.

This was the hardest thing to try and explain to people. They’d ask if Evan had genetic testing done and we’d say, “Yes, he’s had some, but it has all come back normal so far.” Then they would assume that Evan must not have a genetic disorder and that he would eventually “grow out” of his medical complexity. We’d try to explain what we’d been learning about genetic testing. It’s so much more complicated than we ever thought. There are literally thousands upon thousands of genetic disorders and some that haven’t even been discovered yet. Geneticists are learning about genes so much faster with the technology available today, so most genetic disorders don’t have names yet. No one doctor is devoting his/her life to the study of a particular genetic condition. Okay, some are, but there isn’t one for every single genetic mutation that’s been discovered. It would be quite literally impossible.

Based on some of Evan’s labs last spring, we got about 50 or so genes checked for variants to try an explain low immunoglobulin levels in association with his other symptoms. He had a carrier gene for one potential mutation that deals with the way your body processes sugars, so we got specific testing for that disorder, and it came back negative.

From there, we moved to what is called Whole Exome Sequencing. This is a good genetic test for when you have clinical information (symptoms) but no clear direction for what you’re looking for. It looks at variants in the protein-coding parts of a person’s genes. This is high tech stuff way beyond what my brain can fully understand. It’s incredible to me that people have the minds to create such tests. Basically what happened in this test was that Evan’s smaller diagnoses and symptoms were placed into an algorithm along with his blood and our blood. They searched though his genetic make-up in comparison with ours as his parents and then weighed all of that information against what we know about him clinically. So yeah, that test takes a while to come back. We sent it off in October and were told we would get it back in roughly four months and that it was about a 50/50 shot at receiving an actual diagnosis.

On February 11, we got a call from Evan’s genetic counselor at John’s Hopkins telling us the results were in and that we had a diagnosis. Evan has a genetic mutation of the RPL10 gene on his x-chromosome. This means that I am a healthy carrier of this genetic disorder. If we had more biological children, they would have a 50/50 chance of having the disorder (another Evan? SO TEMPTING!). There is no official name for this genetic mutation because it is rare and there just isn’t much research on it. So to those of you wondering, “so what does this mean?” My answer to you is “pretty much nothing.” It is more or less random letters and numbers that tell me what I already know: my kid is a freaking rare and precious gem.

The happiest boy.

Many of Evan’s symptoms can be explained by the little we know about this genetic disorder. Some not as much. It will be hard to know what came from his being born early while still so small and what is just the way he was made. But it doesn’t change anything about how incredible he is or how much we love him.

Our genetic care team is working hard to learn as much as they can about this gene mutation before we meet with them this summer. They are looking for research opportunities for Evan to be a part of that could help us (the global us not just the Nortons) learn more about this condition. As of now, there are literally only a handful of people living with this diagnosis across the world.

One thing I would ask is that those of you who are close to us not Google or try to do your own research on this and talk to us. Evan has over 30 doctors and therapists on his care team. We would like our family and friends to remain just that: family and friends. Love on him. Ask how he is doing. Gush over how cute he is. Please, don’t try to be his doctor. I ask this lovingly.

Here is something cool we’ve learned through the power of social media and Google. There is ONE other child in all of the US living with this diagnosis. Are you ready for the crazy part? His name is also Evan! We found him on a post from Rare Disease Day’s webpage. His mom writes a brief summary of their story. I would LOVE to find a way to get in contact with this family. How amazing would it be to get our boys together? Mostly, I just want this precious family to know that they are not alone. So in order to find them, I am asking for your help! Please, share this blog post with as many people as you can. Hopefully, it will find its way onto this sweet mama’s computer or phone screen.

I am also hoping that we can get this thing named Evan’s Syndrome since TWO of the roughly 10 people in the world with it are named Evan. Who’s with me?!

Before I close what I know has been a lengthy post, I want to share some of my heart with you all. I know Jesus more deeply because of my son. I have seen the grace and mercy of God in ways I never thought I would on this side of Heaven. It is pure JOY to be Evan’s mama, and I thank God every day that He entrusted this precious boy to me. He is more than a diagnosis. He is more than what any test could say. He is a son of the King most high. He is chosen and wholly loved.

“Share my story with as many people as you can! I want to meet my diagnosis buddy!”

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!