Happy today! That is all. 😊
Contributing to the Conversation
She was born in a hospital where she was unrepresented. No art on the walls or people in the halls there looked like her. Where most people chose to say nothing to me, rather than acknowledge or celebrate her beautiful existence. Now she’s in bookstores nationwide, shouting inclusion with her old soul eyes and brilliant smile. My girl came to show up. I could not be more grateful or proud.
I had the opportunity to write for Click Magazine about my unique experience photographing my daughter, who has Down syndrome. I had never shared this perspective before, and some things in this article were a revelation even to Dan. I hope that it furthers the dialogue of inclusion and makes even one more small dent in the wide realm of public perception towards people with special needs and their families. So thankful to be asked to share.
You can pick up a copy of @click.magazine Winter 2021 at Barnes & Noble or online (link in profile). And please do. Representation matters. 😘
#am_nationalparks #mangosdoarches
Light & Chores
He looks good doing the dishes. For all the reasons 😅😘
Looking at you, baby girl.
Tomorrow begins today. We are a group of artists coming together to celebrate history being made.
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"To the children of our country, regardless of your gender, our country has sent you a clear message: Dream with ambition, lead with conviction, and see yourself in a way that others might not see you, simply because they’ve never seen it before. And we will applaud you every step of the way.” - Kamala Harris
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Please follow along and join in with us as #womencelebratinghistory.
CHD & Mental Health Awareness
I don’t know what button was pushed, but suddenly instead of 2 nurses in the room there were MANY. Lydia’s external pacemaker—the one in place while we waited to see if her heart rhythm would normalize after open heart surgery or if a permanent pacemaker would have to be placed—was malfunctioning. A lead connecting the external device directly to her heart had completely severed in a fluke equipment failure. We had anxiously been assessing her stressed symptoms when we realized this. In that moment, the head nurse steel-eyed me as the room filled with people and a cart full of equipment and said, “Normally I would use anesthesia, but this is an emergency...” She then sewed a thick metal grounding wire into Lydia’s stomach while another nurse and I held my screaming 5 month old down. I was terrified. She was in incredible pain. I didn’t know any of these people and the situation was completely out of my control. One of her life-sustaining organs wasn’t working and neither was the equipment supposed to save her. It. Was. Hell.
I will never forget that day or those feelings. I thank God for every miracle that allows her to still be with me, today.
This is just one small example of what medical trauma looks like. In addition to facing the pain of diagnoses & surgeries, there are always desperate, unpredictable moments that crop up. These incidents are often accompanied by months+ of PTSD symptoms. I belong to several online support groups and one of the MOST COMMON requests I see in the local heart family group is “Where do we find a counselor? For my heart warrior. For their siblings. For our marriage. For me.” It is a staggering problem; one I know, personally. We are not doing enough to support these families.
I recently attended a lecture for heart parents in which a licensed therapist was asked point blank why there was not emotional support or counseling provided for parents of cardiac patients at our local children’s hospital (which serves about 5 states). She regretfully gave this heart-breaking answer: Counseling* is not provided to anyone who is not the direct patient because it is considered a “lost cost.”
In short, “Who pays for that?”
The answer is, especially when no support is provided, EVERYONE. Providing counseling to a five month old is pretty futile. All that baby wants is what she knows as security—Mom and Dad. And if they are falling apart? Well, good luck.
I cannot emphasize how desperate the need for emotional support for families of critically ill children is. Especially when some hospital stays last months and treatments are lifelong. The consequences for not providing this type of care affect the patient, the entire family, and society as a whole. The statistics for marriages in these households are not good. The statistics for the emotional well-being of patients long term are even worse. Medical trauma is real and when untreated wreaks havoc on patients, families, and communities, alike.
February is Heart Month & I felt this was the most important thing I could share. For every post you see about raising awareness for the physical treatment of CHDs (1 in 100 babies will have one), please consider the emotional battles fought, as well. The pain and consequences are real. We HAVE to do better.
I recently joined the board of a local nonprofit that provides support to heart patients and their families, including those who have lost family members to CHD. There is absolutely a supportive, knowledgeable community there for families fighting CHD! But there are things everyone else can do to help, too. Speak up. Normalize mental health practices & therapies. Donate time/money to support groups or emotional wellness programs. Recognize that physical & mental health must be mutually treated. Listen to a hurting friend. WE CAN DO MORE. It matters.
If you are struggling, please don’t do it alone. Ask for help. It’s a good thing. 🙏🏻💛
*Our hospital does provide social workers, however they are severely understaffed. We heard there was someone assigned to the cardiac ICU, but Lydia’s nurses were the ones who (on top of their medical assignments) completed the tasks our SW would normally do such as securing overnight hospital accommodations for us and offering limited (but treasured) emotional support.
World Down Syndrome Day 2019
What do you even say when someone comes into your life and completely changes everything—in the best way? I love you, Baby Girl. Thanks for helping me truly see. 💛
#misslydiefaith #theluckyfew#worlddownsyndromeday2019
Remembering
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. 😍
#misslydiefaith #theluckyfew#worlddownsyndromeday2019
The Lydia Necklace
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.
Nap Time
Me after our back-to-back-to-back birthday month 😅
Learning to Crawl
Taking a well-deserved break from all that crawling practice. She’s making progress, little fighter girl! ❤️💪🏻
International Women's Day
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.
#internationalwomensday #shouttheirworth
Rocking Chair Conversations
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.
On Empathy
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.
Advocacy
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
One Year!
One year ago there were a lot of tears and prayers. Today there are a lot of prayers and smiles! 😄💗 Happy birthday to our sunshine!!! WE LOVE YOU! #misslydiefaith #theluckyfew
Heart Story Continued
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
WORTH IT ALL
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
Recall
“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.
Time Sensitive
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
The Beautiful Hard is Worth It
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
