I don’t really like to take self portraits, nor am I good at it, but every once in awhile I get the urge to let my kids know that I was there, too. 😜 Surprisingly, it can also be a good reminder of what’s most important. My hair is not done on purpose because that’s how they see me 9 days out of 10. It’s in black and white because we haven’t painted the new house yet and I don’t like the color of the walls now. If you look closely you can see spit up on the baby’s pants.
So basically, this is us, right now; and life is perfect in its imperfections. 💗
Brothers
“Mom? Did I always pull out MY oxygen when I was a baby?” “Mom? Did I have Down syndrome when I was a baby?” “I don’t want to go to the doctor!! ...Are they going to cut me open?” “Lydia is sick?! I hope she doesn’t.......”
*
These boys. They have grown a lot this last year. Their questions and prayers and love humble me. They love their baby sister with all their hearts!! As far as I’m concerned, they’re warriors, too. It’s a family affair. ❤️💗❤️ #heartwarrior #chdawareness
Paper Heart Project
The #paperheartprojectwas started in 2016 by Danielle of @littlefarmphotography. Her 5 yr old son, SJ, was born with 10 CHDs and has had 3 open heart surgeries. Every February, I love watching people come together to support this beautiful project that spreads awareness for CHDs. This year it is extra special to me. Look up the hashtag—you won’t regret it. ❤️ Anyone can participate. To do so, simply take a picture of a paper heart and share it on social media with the hashtag #paperheartproject. Congenital heart defects are severely under researched and underfunded. Help us share the love and raise awareness. #misslydiefaith#heartwarrior #chdawareness #zipperclub
Heart Story Part 3
At 4 days old, Lydia had an echocardiogram. An echo is an ultrasound of the heart and is the most reliable way to accurately see the heart’s structures without actually going in there. It is not a fail-safe, however, as we would find out during her open heart surgery. A tech came and performed that first ultrasound right next to her NICU bed, then an off-site cardiologist read and interpreted the results. This picture was taken just minutes after we received Lydia’s heart diagnosis. We were literally on our way out of the NICU—oxygen, monitors, and medical supervision on hand, headed to a hospital-requested photoshoot—when the pediatrician on call showed up to tell me the results of the echocardiogram we had done the day before. No one could have anticipated that timing and I tried to gather my scattered thoughts quickly as I assured the doctor that photographer and nurses could wait—this was more important. I could tell he was hesitant and I should have taken my cues—this was no information to be dished out in five minutes—but I truly had no idea what was coming. As he started describing—LISTING—the various findings, my brain stuttered. I had heard the words “congenital heart defect” before, but what did that MEAN? The doctor patiently but hurriedly (photoshoot, remember? 😂) drew a diagram of a heart on a piece of paper and described what the issues were and where they were located. Within 15 minutes we were on our way again, me pushing all that new and heavy information to the back of my mind to deal with, later. I could not have been A) more naive regarding this diagnosis or B) more committed to seeing at least one picture of a special needs/medically fragile baby on those hospital walls in order for that photoshoot to happen. It was basically a disaster but we got what we needed, and while they can never really KNOW the full story, I hope that future parents in our situation, devastated by some serious diagnosis, will look at that picture of our baby girl on the wall—in the very thick of it—and know they’re not alone.
#misslydiefaith #heartwarrior#chdawareness #theluckyfew
Heart Story Part 2
I hadn’t started studying photography until after my second son was born, and I was all sorts of excited to document this little human’s birth. Along with my camera, I packed plenty of swaddles with matching headbands (first girl!) and my letter board. I was all set for the perfect documentary newborn images of my dreams.
Well, the big delivery day arrived and we were ready to go! My water broke and the contractions were coming on strong so we headed to the hospital. While I was in labor we walked the halls, admiring all the beautiful baby pictures on the walls and wondering what our girl would be like. And then she was here! And I knew immediately that all the doctors had missed something big. It was obvious to me (and everyone else) the first time I saw her that she had Down syndrome. This was confirmed a few days later via a genetic test.
That first night, they whisked my baby off to the NICU, and I was left to wrap my mind around what was happening. In the NICU they immediately hooked her up to some low flow oxygen and ran the labs for the genetic test. Because babies with Down syndrome are often born with heart defects, they also took a preliminary x-ray of her chest. The nurses kept asking me if her prenatal ultrasounds had shown any heart issues, and I told them with confidence that her heart was fine. They commented over and over how fortunate that was! Later the next day we got the results of the x-ray which validated my response: it looked clear. The nurses congratulated us again, but I just couldn’t get past the Down syndrome thing so the heart tests seemed secondary. I think God was being merciful and giving me one thing to swallow at a time. We were about to get not just one but two devastating, life-changing diagnoses.
As for my camera, it took me a long time to take any pictures. Instead of natural light streaming over a baby resting peacefully in sweet clothes, I had harsh light behind curtains in a back corner of the NICU, and an inert baby covered in monitors, tubes, and wires. Clicking that shutter made my new reality a little too real, and it took me a long time and definitely some conscientious efforts at courage to embrace our new story.
Heart Story Part 1
Look, it’s baby Lydie and her heart!! ❤️
I think every mother who has ever gone in for the 20 week anatomy ultrasound knows the intense emotions that come from seeing your little baby pop up on the screen—a living, beautiful, individual person. And if you’re like me, in those moments you are half in awe and half praying/anxiously waiting to hear medical confirmation that everything is “all right.” Congenital heart defects are present before birth as they occur when the heart is first being formed—but they’re not always found in these prenatal screenings. In fact, some people with CHDs (depending on the severity) may not find out for many years—if ever—that they have one!
At our first ultrasound, the tech noticed that Lydia was measuring small, but saw little else to raise concern. We agreed to watch her growth for a couple weeks and come back for another scan. At the second appointment she was still measuring small so they referred us to some specialists. Around this time I started worrying and googling as mothers do. I was so worried that I pulled out my first son’s ultrasound measurements to compare, as he had also been small. Their measurements matched almost perfectly. As my son is now a perfectly healthy & happy school-age child, this was very comforting to me! And sure enough, when those specialists looked her over—two different doctors on two different occasions; one just a month before she was born—they could find nothing wrong. “She looks great!” They told me, and each specifically mentioned her beautiful heart. In retrospect it is a testament to how difficult an ultrasound of a heart smaller than a strawberry can be to read, as all four ultrasounds failed to show any one of her four congenital heart defects. We went through the rest of our pregnancy blissfully unaware of just how special our baby girl was going to be. #misslydiefaith#chdawareness #heartwarrior
Heart Month
We are part of two very special clubs: the #luckyfew with Down syndrome, and the #heartwarrior CHD (Congenital Heart Defects/Disease) club. While these two clubs often share members, they are very different, and each have their own challenges, miracles, and fierce loyal fans! February is heart month (of course!) so this month we are going to celebrate heart warriors and share a little bit more about all the amazing experiences this journey has given us. ❤️❤️❤️ #misslydiefaith #heartwarrior#chdawareness #thepaperheartproject
Birthdays
I keep fighting voices in my mind that say I’m not enough
Every single lie that tells me I will never measure up
Am I more than just the sum of every high and every low?
Remind me once again just who I am, because I need to know *
You say I am loved when I can’t feel a thing
You say I am strong when I think I am weak
You say I am held when I am falling short
When I don’t belong, oh You say I am Yours
And I believe, oh I believe
What You say of me
I believe
*
The only thing that matters now is everything You think of me.
In You I find my worth, in You I find my identity...
Taking all I have and now I'm laying it at Your feet
You have every failure God, and You have every victory
*
You say I am loved when I can’t feel a thing
You say I am strong when I think I am weak
You say I am held when I am falling short
When I don’t belong, oh You say I am Yours
And I believe, oh I believe
What You say of me ...I believe
*** To 33 and the year I learned a little bit more about the Annie God says I can be—with Him. “For with God, nothing shall be impossible.” Luke 1:37; “You Say” by Lauren Daigle
RSV?!
Lydie tested positive for RSV, today. Cue all my terrors. 💔😭🙏🏻 So far we’re managing it at home with the dr on speed dial and regular trips to “suction clinic” and anything else I can think of to fight this.
Send us your happy thoughts because we are sad.
LEGS!
Look at my baby girl in her jumper using her legs!!! 😍😍😍
Babies with Down syndrome have very low muscle tone and many struggle with the ability and sensation of putting weight on their hands and feet. We have been working on these skills with Lydie, and in the last month they have started to click! Watching her discover how fun it is to kick in the bath or to push with all her tiny strength against the arm of our rocking chair as I burp her is amazing!! The fact that she has developed enough core strength to hold herself up (something else we’re working on) in her jumper or baby gym is exciting!! She may not be actually jumping around yet, and who knows how long that will take, but we’re finding our footing, guys. In more ways than one. 💕 #misslydiefaith #theluckyfew#celebrateeverymoment
Januarys
I’m tired. Not the kind of tired that goes away with a nap or 10 naps or even a year of naps. I’m the kind of soul-tired that comes from having multiple facets of life change or even completely fall apart and then rebuilding it all into something entirely new that you never even imagined it would be. Maybe multiple times. The kind of tired that can only be healed with time and continued efforts and mostly God’s grace. You know what I’m talking about; I know you do. I’ve watched many of you rebuild your lives after hard things, too.
I imagine myself at some point sitting down with a therapist and telling her all about my deepest fears—the ones I’ve overcome and the ones I still face. Except, I don’t have the energy for that kind of conversation, so mostly I’ll just sit there and look at her with eyes that say it all, and she’ll miraculously just know. And then I’ll lie down on the desk that sits between us and fall asleep.
That’s what some of my prayers feel like these days, actually.
This is my boy in January. A January long and cold and bleak, but also full of new beginnings and depth and fragile crystal beauty. Januarys are like that.
Mama's Hair
She loves my hair. Loves it. When it is down she grins and grabs at it all day. When it’s in a ponytail she giggles when it flops over as I lean over to change her diaper or reaches up to pat the top of my head when she’s on my lap. She even loves to watch me blow dry it. It’s one of my favorite things about her right now—this obsession. She’s my girl.
Metaphors
There’s some thawing, freezing, thawing going on outside.
Food!
Weightier Matters
We’re big new year’s resolution people over here. Each year I look forward to setting goals in a variety of areas. Last year I watched my husband carefully plan out his goals. He posted them prominently in our room. They were ambitious. They were varied. They were measurable. They were everything that good goals should be. And he was good about keeping track of his progress. But then life hit. HARD. Like a train wreck. And because his attention was demanded elsewhere, the goal chart started to look more empty. Gradually that chart seemed to be a record of all he wasn’t accomplishing instead of what he was. Eventually, maybe in the summer sometime, he took it down. I have thought about that off and on during this year of hard things. I have thought about his missed goals and how lousy looking at that chart could have made him feel. I wish he could see MY chart for his accomplishments—or better still, God’s. The one that marked every sacrifice, every kind deed. Every smile through tears, every moment of picking himself (and more often me) back up and trying again. Every important, unmapped detour taken out of love. Every way we grew in ways we never even considered. There were some big check boxes in our year that did get marked, and some that didn’t. But what stands out to me more are the little, truly character-defining moments. The things that no chart can ever display. The important things buried in everyday life that make us who we really are. Are we setting goals for the new year? Yes, because that’s a good thing to do. But I am also grateful for a year of “missed” things that allowed us all, quite unexpectedly, to grow a little more into who God wants us to be. And I am also grateful for the little, the normal, the status quo, the now, that I don’t think I will ever take for granted, again.
Bows & Smiles
Went to the children’s hospital today for a routine blood draw. Was DREADING it. Last time we had blood drawn we required the ultrasound machine because baby girl’s veins are so teeny. There’s few things worse than holding your baby still while she’s tortured over and over. So when I walked into the hospital with my heart in my stomach and saw a basket full of @littlepoppyco bows for the kids & was invited to take one, I almost cried. Because this mama & babe needed some extra love, today. This is not the first sweet, seemingly simple but emotionally huge thing kind people have done for us, and I want to do a series of posts thanking all the good souls out there who give to brighten someone else’s day. It truly makes a difference. 😭❤️❤️❤️ Related note: the medical staff was AMAZING and the whole thing went completely smoothly. So grateful for the many talented people who love our kiddos in their own unique ways.
Cracks
You know the phrase “something fell through the cracks”? Well, I’ve been thinking about that. There’s the deck/boardwalk stage of life where, yeah, you might drop something every once in awhile and it rolls away from you and tumbles down a crack, but those cracks are pretty tiny, so chances are you just drop the thing, chase it, dig it out of the crack, and move on. Then there’s the railroad-bridge stage of life. The cracks are a little bigger. If you drop something now, you probably don’t have time to pick it up because there’s a train coming, so you let it fall into oblivion and keep rattling down the road at breakneck speed, trusting all those steel supports and trusses to hold up what’s important. Then there’s the “Tarzan swinging from vines in the jungle” stage, where the whole world IS a crack, and you’re just swinging through, grasping whatever you can get your hands on/every rope God throws you, and hoping you stay alive.
I think we’ve traveled the gamut this year and are now somewhere between stage 3, headed back to stage 2, hopefully someday stage 1. Maybe. 🤔
Deep motivational thoughts by me as I lie in bed listening to kids who are up too early and battle-planning my day. Also, maybe that’s the Christmas card I’ve been trying to write. 😂👊🏻
On Mountains
Once, a few years ago, I had a two and three year old and we were about to move across the country for grad school. We had one month to go and were neck deep in preparations. With this incredible timing, I got the sickest I have ever been. I literally could not hold my own head up for more than 15 min. A trip to the doctor revealed the cause: pneumonia. What?! How could this be?! It was JULY! Why now?! How would I take care of myself, the kids, and prepare to move?! The doctor prescribed some strong antibiotics which I began to take immediately only to find out I was severely allergic to them when I broke out in full body hives. Like, even on the bottoms of my feet 😳 I remember lying in bed, itching and coughing and miserable and just having to laugh-cry because HOW could it be this miserable?!!!!!!!
Whenever I hit a low point—a perfect storm of hard things—I remember that moment. It always makes me laugh (cry) because life is just so dang crazy and hard sometimes, for no apparent reason.
But it is also good to remember the days my husband was able to take off work; my mom who drove 8 hr to help (twice!); the neighbors who watched my kids; and the miracles God worked out for us. I healed eventually. Other people packed for me because my lungs took months to heal. The kids were fed and loved and stayed healthy, and we made it to the other side of the country and that hard thing.
This has been a year of hard things. More than I’ve shared. And it’s not stopping. But neither are the miracles, so here is to prayer and grace and service and survival and eventually reaching the other side of the mountain. ❤️🙏🏻🙏🏻🙏🏻
Thanksgiving
Family dr selfie! We spent the day nursing colds, going to the pediatrician for expensive shots, and driving 45 min to the one pharmacy that had the medication we needed in stock. We don’t really have plans for Thanksgiving tomorrow, just being at home together and my sweet mom is bringing us dinner since we won’t make it to any festivities. I admit, it’s not what I thought Thanksgiving would look like. It hurt to miss the Fourth of July, but at this point in the year, we’ve missed holidays and church and birthdays and weddings so I’m just like, “Meh, par for the course.” It sounds super depressing, this year of “missed” things, until I realize all that we’ve gained. It’s like we’re on a study abroad where all the usual activities and routines are suspended for a short time while we gain a new perspective in a different place. And what a perspective. Yesterday we were sick sick sick, but as I sat there rocking my sleeping baby and looking at my husband resting on the bed, I realized this isn’t the worst thing ever. In fact, I was grateful for that beautiful moment for many reasons. (Like how no one was in the hospital!!!) Not because I’m some kind of unnatural super positive goody goody—believe me, I did my fair share of complaining and asking “Whhhhyyyy?!” yesterday, too... but I am amazed that when you have to trim even what you thought were the indispensable happy things (like holidays), as long as you are together and there is love you’ve got something to be thankful for. “And the Grinch, with his Grinch-feet ice cold in the snow,
stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled 'til his puzzler was sore. Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store. What if Christmas [or any day], perhaps, means a little bit more.”
