This picture will always mean the world to me. This was the day I decided to take Lydia’s newborn pictures. I had anticipated that day for so long. My baby girl—dressed up and presented to the world as only her mother could show her. But once she arrived, I didn’t know how to do it. I couldn’t do it... for days. Because we mothers are protective, and I was afraid—so afraid of what the world would say. How they would stare. Whether or not we were forever “different,” and what that would mean.
But on this day, I faced those fears (literally) and took a full frontal portrait of my baby. I included the wires and the oxygen on purpose because, while they didn’t define her, they were part of our story. I wrapped her in a gorgeous blanket that I had purchased from the hospital gift shop after she was born—a gift for THIS baby, not the one I thought was coming. And I shot that portrait head on—with any Down syndrome markers in full view. Then I shared it with the world. No apologies required. I love this portrait. I will always love it. I love it for what it took and how true to life it is. And I especially love it because that is my baby. Although I took a lot of pictures, I wish I had taken a million more, because you know what? I will never have another one like her. Those almond shaped eyes that originally scared me to death are incredibly beautiful to me now. I want to capture every detail. Amazingly enough, when looking at pictures of other babies, I sometimes genuinely struggle now to distinguish whether they have Down syndrome or not. Because I have a direct window now to the person, not the diagnosis. And gosh she’s amazing, that beautiful girl and the new eyes she’s given me. I cannot get enough. 😍
The incredible company @wellscooperative honors a lot of amazing people and causes with their jewelry. In celebration of World Down Syndrome Day this month, they asked if they could name a piece after Lydia! 😭😭💙💛 We feel so honored and her necklace is perfect for her! We love this girl so much and are so proud of her. If you’re into pretty jewelry or inclusion or good causes, please consider getting yourself a Lydia necklace. And if someone asks you about it feel free to share that different is beautiful!!! May it always make you smile & remind you that good things can come from unexpected circumstances. ❤️
Here’s something I wrote in collaboration with Wells for the necklace release: After Lydia’s birth diagnosis, I was overwhelmed by fear—a desperate fear of two words, “Down Syndrome,” and all the stereotypes that came with them. I thought then that Down Syndrome meant “limits” and “loneliness” and “loss.” As I sat in the hospital holding my new baby, however, I began to know what WAS instead of just what I thought would be. And what was—the actual reality gazing out at me from deep blue innocent eyes—wasn’t scary at all. It was new and unexpected, but it was also deep and rich and enveloping. It was perspective. It was love. It was growth and opportunities I had never dreamed of. And ultimately, it was peace. This necklace reminds me of the hundreds of things I have felt and learned while staring into Lydia’s beautiful blue eyes. Life with my daughter has taught me to see and love more completely and authentically than I ever have before. It is truly beautiful and a gift.
Me after our back-to-back-to-back birthday month 😅
Taking a well-deserved break from all that crawling practice. She’s making progress, little fighter girl! ❤️💪🏻
When I found out I was expecting my first baby girl, I felt a different responsibility as a mother than I had before. I am a girl. I know what it’s like. I knew she would look to me to show her the way. Those months before her birth I wondered: What do I want to teach this child? What do I hope for her? To be brave. To be fearless. To WORK HARD. To not let anything stand in her way. To have opportunities. To go after her dreams. To find her voice and use it. To be and do good. To know she is worthy, valued, and enough.
I wish the same things for her, today—only more so.
Sometimes you put your little hand or hands on my face and stare into my eyes like you really want to know me. To tell me all your things. To be SEEN. It often makes me catch my breath. I’m always amazed at the size of your soul in there.
One of the biggest lessons I have learned this year regards the gift of empathy.
I think we live in a society of sensationalism and instant gratification—two cultures that train even the best of us to hear if not seek out surprising stories and move on. It sounds so harsh, but I think it happens more often than we think—if for no other reason than we are simply surrounded by SO MUCH information every day, much of it is heavy, and as humans we can’t carry it all. So we protect ourselves by minimizing our contact with pain out of sheer self preservation or through our own busyness.
I have heard other moms who have expressed how lonely it is to walk through chronic/serious family health challenges. I think I’ve always been an empathetic person, but I have realized that my own past lack of understanding or EFFORT to understand more fully has stood in the way of my being able to best serve others. It is one thing to offer meals and child care and transportation. Those things are necessary and huge!! 🙏🏻 But I wish we gave more credit to the acts of genuine emotional service we can give each other.
To those who have been praying for our family thoughtfully for months, you have lifted my burdens.
To those who have called or texted or stopped me to sincerely ask how we are doing, you have helped me feel less alone.
To those who have responded when I have shared a piece of my heart, even though the words are heavy and hard to hear and maybe repetitive, you have helped me find healing.
To those who have heard our story and in turn share it with your children in the hopes of teaching them empathy and inclusion... my tears flow freely and my heart explodes with gratitude. You give me hope in the world and make me want to be a better person, in turn.
To those who have simply been there—present emotionally, whether or not they understand or have similar experience or special education or feel “adequate enough,” but who are there simply because they LOVE—you have taught me what it means to be Christlike. You have expanded my heart. You have made me better. We LOVE you.
Incredibly honored to have Lydia’s story shared by @thisiswhyweadvocate today. Please go check out their page and be inspired by the many AMAZING children!!! 💗💗💗
*** Here are some details of Lydie’s CHDs and heart surgeries. She was born with an ASD (hole between top two chambers), a PDA (passage that should have closed after birth but didn’t), a very large VSD (hole between two bottom chambers), and a bicuspid valve. Her first surgery was more complicated than they thought it would be, and essentially was a partial AV canal repair in which they patched the three holes. After going into complete heart block, her 2nd surgery to place her pacer was one week later. I am absolutely amazed by and incredibly grateful for the miracles of modern medicine!! #misslydiefaith#heartwarrior #chdawareness
The months leading up to Lydia’s surgery were very hard for me, and the closer it came, the harder it got. A month before the surgery we had her baby blessing and family pictures. I had to do those things. You never ever ever want to think “just in case,” but, yes. Those were the thoughts and motivations behind everything those days. The emotions still bring me to tears, and these pictures will forever be so precious to me. Lydia was in heart failure for months before her surgery; surgery was necessary. She couldn’t eat well—feedings took 1.5 hr each and were an around-the-clock chore. Any sickness would have set surgery back at least six weeks and so we kept her very isolated, even from her brothers. We took turns attending two family weddings, going to church, and everything else. The boys spent the summer with their grandparents because I just couldn’t meet their needs and Lydia’s at the same time. Dan and I were getting 4, maybe 5 hr of sleep each night, and Dan was commuting an hr to and from work each day to a brand new job. A week before surgery, I got SICK. I evacuated the house while Dan took off work and I literally slept for 3 days straight. My body had met the limit of what it could handle emotionally and physically. It took everything we had. Our new bishop (we recently moved) asked me, “How did you do it?” In all sincerity, the answer is GRACE. There was no other way. I lived it and I still don’t believe how hard it was or how we made it. The ONLY way we survived those days was through Christ’s help. The literal strengthening, enabling power of the Atonement. I have never prayed like I did during that time. I have never seen miracles like we did. It was hard and sacred and unforgettable. #chdawareness#misslydiefaith
I once took a class from a very amazing and talented teacher (who I greatly respect) who said, basically, “What’s with the tortured artist concept? Just make art and be happy about it!” And I responded “Yes. The tortured artist is an unhealthy and probably not very productive approach to life. Definitely. BUT, if you are asking people to really SEE artistically (which was also a large part of the class), don’t you think that, to be fair, some ugly shows up with the good? And maybe, if you’re really seeing everything, you’re going to FEEL it, sometimes, too?” It’s heart month, and I’ve been really honest out here on social media. Uncomfortably honest. For me and for you, probably. It’s a little bit because, yes, these experiences are emotional for me and writing them out is therapeutic... but it is also because I am passionate about being real. Someone once commented to me, “It must be easy to take such beautiful pictures when you have such cute kids as models!” It was a harmless comment, but it made me think—and I’m not making this up: “What if life WASN’T so picture-perfect? Would I have the guts to try to capture it and share it, then?” Well, guess what? Life got very real. And I had to make a choice. Was I going to just post what was pretty and ideal, or was I going to be real?? In the last twelve months, I’ve learned a lot. But one thing I have learned more than anything is that I LOVE my kids. And I literally would not trade any of them for the world. Another great truth I have learned is that there is good in hard. Beauty and ugliness live side by side, and each helps you appreciate the other. I know it has been heavy around here. But otherwise, how could I post a picture like this and convey with depth and complete sincerity how much these people and this year have blessed my life? What would that mean to anyone? I don’t have to share the backstory—for a million reasons—I could just say it and move on. But I am inviting you to know how deep it goes when I say I love these humans and being with them is worth every. hard. thing; that this life is BEAUTIFUL, even when it brings me to my knees. That God is REAL and His ways are higher than our ways and ultimately will lead us where we need to go, if we let them.
I hope that when I post pictures of things in pretty light—because that’s what I do—that they’ll mean a little more, now. That having shared some of the hard honesty (which isn’t something anyone HAS to do, and certainly isn’t for everyone, I know) will allow all the gratitude and depth and yes, beauty and grace that come with those pictures to shine through. Because THAT’S what’s real. We’re not superheroes over here. We’re not models or a tv show. We’re human. And that’s significant. #thebeautifulhard#wouldntchangeathing
“That’s how we live our lives, right? On the edge?” —another heart mom’s words to me after we both learned two weeks ago that certain models of baby pacemakers have been recalled.
When Lydia was diagnosed with her 4 CHDs, several people (mostly nurses and echo techs) told me, “At least it’s something they can fix!” And true—while you never want ANY CHDs, ours were far from the worst possible scenarios. 🙏🏻🙏🏻🙏🏻 She “just” had 3 holes and a bicuspid valve! 😂 (But seriously. There’s LOTS harder things. ❤️) We were told that surgery was going to be a one-and-done, fix the problem and live happily ever after thing.
I kind of wish no one had said anything. Because the truth is, once a heart family, always a heart family. Things have been a lot more complicated than that. Maybe that dream scenario pans out sometimes, but for us, once we got into surgery, things were a lot trickier than they had appeared from the outside. One of the complications was that tissue necessary to help close the holes just wasn’t there; there was nothing to sew TO. Which resulted in us scoring the 3-5% lottery of “patients who may experience complications—including complete heart block.” Long story short—your heart has two halves that work together and talk to each other. The communication lines in Lydie’s heart were disrupted during surgery. She had a very gifted surgeon and we are so grateful—we don’t blame him at all. It’s just what happened because of how her heart was formed. So one week later she had to have a permanent pacemaker placed. And then I knew we were in it for life.
Fast forward to two weeks ago on my birthday 🙄 when I got a call from the heart center at the hospital. And you don’t ignore those calls. “Don’t panic, but Lydia’s pacemaker has been recalled.” Um...what? Of course there was panic. Especially when we started talking to other heart families and heard about emergency surgeries, etc. But every heart case is different and every pacemaker has extremely personalized settings. We fell under the “not an emergency, but please come in so we can check this” category. Two weeks of sleepless nights waking up to stare at her monitors. Two weeks of desperate prayers that her pacemaker will A) work correctly and B) not require another surgery that will set my girl back. Stress. All the stress. What I didn’t realize at the time of her diagnosis and what that mom was referring to in her comment quoted above is that this is a hard part of being a heart family. (Hard, but still worth it.) You never quite know when a small detail will change and shift the whole balance of your life. It really is living on the edge. And we don’t even have the worst of it!!!
Anyway. Prayed a lot. Prayed for days; prayed this morning; prayed driving to the hospital. After tests and drs etc etc the end verdict is that we are ok for now. Monitoring things, but ok. And I am so grateful. I feel a little bit like we escaped something very scary by the skin of our teeth. I am reminded again of how much I need God’s strength EVERY DAY. Because heart families are just normal families, facing scary things. Living life on the edge. With all our beating, racing, grateful, praying, tired hearts.
When we were in the hospital for Lydie’s surgery, a sweet friend (you know who you are 💗) sent me a gift card. I put a lot of thought into how to use that gift that arrived during one of the hardest times of our lives, and I bought... an analog watch. I have a digital watch—it counts my steps and monitors my heart rate and delivers texts immediately to my wrist... But I wanted an analog watch to remind me to disconnect. To remind me, more than anything, that time is fleeting and precious. That time is SHORT and you never know what tomorrow will bring. I wanted to remember forever the lessons of the hospital that fell so heavily on our shoulders; when your baby relies on a machine to help her breathe and another permanent one to help her heart beat, you realize really quickly how finite our lives are. That you can never know how many moments you have. I realized that when I sit and hold my babies, I need to really soak them in. That when I spend time with people I love, I need to be really present. It’s so easy to forget. It’s so easy to get distracted and take it all for granted—it happens to me all the time. I love having a tangible object to remind me. I am so grateful for the gift of now, and, through Christ, the gift of forever.
*** Congenital heart defects are the most common birth defect. 25% of babies born with critical CHDs will require life-saving surgery during their first year of life. 75% of babies born with critical CHDs make it to their first birthday—which means that 1 in 4 do not. Lydia’s birthday is this month. ❤️ We love and pray for the many, many families whose precious babies fight a daily battle, and for those whose valiant warriors return Home too soon. #chdawareness#misslydiefaith #heartwarrior #theluckyfew#paperheartproject
When Lydia was born, I was devastated by her Down syndrome diagnosis. I didn’t know then what I know now, and I didn’t know HER. She may be a little bit slower to reach some milestones, and she may even look or sound a little different, but did you know that people with Down syndrome can go to college? Own a business? Create beautiful art? Serve and contribute in their communities? I had no idea that real possibilities for success like this even existed! I am legitimately hopeful for her future and excited to see who she becomes! I really believe she can change the world. Lydie is a beautiful person. She pours out love and optimism, in spite of going through hard things. I learn from her and our journey and the people we meet because of it all the time. You cannot overestimate the joy she brings us; I wouldn’t trade her for the world. I think that’s why people use the hashtag #theluckyfew. But I want to be sensitive, here. Some of the loudest voices in the special needs community come from healthy families. And their messages are beautiful and correct and worth sharing! Shout them from the rooftops because the world just doesn’t see their worth!!! But Mama, if you find this road challenging, that’s ok, too. Life can be beautiful AND hard. It can be a struggle AND worth it. I might even go so far as to say some of the best things in life are that way. I love the rallying cries #cancersucks, #heartwarrior, and #heartstrong. They acknowledge both the battle and the support. The worthiness. The strength. And trust me, my baby girl is STRONG and WORTH IT ALL. Every person is—don’t forget that. If your extra chromosome comes with a few extra challenges (and the fact is, people with Trisomy 21 are at higher risk for heart problems, cancer, and other health challenges), take heart. Life is still beautiful. You will probably come to see & savor its beauty in ways you never thought possible. You will be grateful for what you learn on this road. And please know this—whatever the challenges or however unique and alone you may feel sometimes—you are NOT alone. Everyone has their “thing.” You are loved. You are worth it. Fight on. ❤️ #misslydiefaith #theluckyfew
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. 💗
“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
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
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
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.