White picket fenced.
March 2020
March. You were a hundred years long, but full of beauty just the same.
Breathe
Play Break
It’s been awhile since I have played. I miss play. Bring back play. ☹️
What are you all doing to give yourselves a break and keep your sanity during this? I need ideas and/or commiseration, please. 🙏🏻❤️
Optimism
One of my friends was talking today (on Marco Polo) about how the quarantine has reminded her of how much we take for granted, and that really resonated with me. Going to church, sending our kids to school, going grocery shopping whenever we have a craving or run out of something, participating in extracurricular activities, working/collaborating, being with family and friends... it goes on and on! Even just feeling safe and healthy. I hope (and believe) that when this is all over, the sky will be a little brighter, strangers will smile at each other a little more, and we will complain less about all the things—privileges—that fill up our schedules. Because we’ll know. 💛
Memories
Who knows what they’ll remember from this thing, but I hope this is part of it.
New Routines
How we do.
I want to remember the weird routines we have in place during this time. Dan, who goes to work everyday in a vogmask, comes home and immediately changes clothes in our mudroom then heads straight to the shower before touching anything or anyone. He is the only one that does grocery pickup or goes anywhere, and always in the mask. Always followed by a shower. Me, buying all the vitamins, school supplies, whatever on Amazon, then spraying the packages down with Lysol the moment they arrive—after which they get moved into my office in their boxes where they sit for a good long while because I am afraid of opening them 😂 My boys, who thank heavens have each other, and when they ask to go outside and I reply “Ok, but what are the rules?” automatically respond, “Stay in the yard and don’t get close to people.” It’s all so weird, right now. Our world has gotten smaller—but also tighter. There are emotions and highs and lows for sure; but we’re doing what needs to be done, and we’re making it.
Please stay healthy 🙏🏻🙏🏻🙏🏻
Spinning
The days, a blur.
Emotions, a blur.
Strategies, a blur.
Blur, blur, blur.
Homeschooling
Foreseeable future.
Physical Therapy
A very common sight around here. Therapy in the standing thing & playing with her favorite toy—the wooden spoon 😆
This thing has made such a difference in her muscle strength! So very grateful that we have options to use at home while other therapy appointments are suspended. Growth goes on.
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
