Precautions

Whenever anyone gets sick around here.

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Star Girl

Have you ever read Stargirl by Jerry Spinelli? I love, love, love that book. It’s written beautifully and tells the story of a girl who is markedly unique. She is in high school and runs into the question that we all eventually ask ourselves: is it better to be true to ourselves or become what everyone else expects or wants us to be? Dan and I read this book together shortly after we were married because I love it and had to share it with him. I believe its message is important and powerful. But I recently, about two weeks ago, read it again. I came to it this time with slightly different experience under my belt, and often read it as my very own Stargirl slept in my lap. It was even more lovely and poignant than before. To see our individual differences as beautiful assets and to appreciate the unique contribution each person is here to make. To see and love and marvel at the individual soul. I know it sounds a little like a sweeping, cheesy concept... but is it? Or are we really spirits “trailing clouds of glory” (Wordsworth’s beautiful phrase) with a divine past, present, future, and worth? Children of God. (It’s not a religious book; that’s just my take on it.) Do I see and focus on the differences, or recognize the beauty and knowledge to be gained from every unique soul? And how important/relevant is the latter in our world right now?!! I’m so grateful for this girl who has brought so much beauty into our lives, along with a much greater perspective.

Eight Months

THIS GIRL. I thought I would give a quick update on Lydia. She is 8 mo old now! How?! The last month has been amazing to watch as she has transitioned out of healing after surgery into developing and thriving. She eats MUCH better—it is a miracle to us! Ever increasing amounts and in a reasonable amount of time! 🙏🏻 And she’s gaining weight. We can’t even say how amazing it is to be on this side of that Everest. What a huge blessing. Her little personality keeps coming out and we LOVE her cheerful soul! I feel like we have watched this child be born multiple times and each time is more amazing than the last. ❤️ We had a pacemaker check this week and things look good there. We also started the Early Intervention program which gives her access to a variety of different therapies as she needs them. Her evaluation this week went really really well! She really is a wonder to me. They say that motherhood is to live with your heart always walking around outside of your body. So true for every child. There has been deep pain and anxiety and trauma and fear, but there have also been miracles, triumphs, angels and grace, and sacred savored joys. What a gift of life she is to us. ❤️ #misslydiefaith #heartwarrior #theluckyfew

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Backseat rebellion.

#dontmakemecomebackthere #misslydiefaith #O2life #betweencannulas

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Where does it come from?!

The closest relative we know of with red hair is her grandma’s grandpa. 😮 This was a couple weeks ago and now she’s starting to look like a little fuzz ball but I won’t cut it because what if it never comes back?!! #misslydiefaith#7months

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Got Questions?

A few months ago I was asked to submit pictures for a class I was participating in. I chose one of Lydia that I had taken during the class and liked. As I was sending the email off, I thought, “She has oxygen in. I wonder if they’ll care?” I almost don’t see that anymore. And it was literally MONTHS later when I was looking at that picture and remembering that experience when I realized, “Aaaaaaand she has Down syndrome.” No big deal 😂 
THAT, my friends, is the gift of new eyes. This girl has literally changed the way I see. Things that used to catch me up, grab my attention, make me feel unsure of what to do, even, don’t as much, anymore. They are not, actually, big deals! Instead of feeling awkward around people who are different, I get excited and smile. This amazing little person has taught me, with no words at all, to see and love and appreciate people for who they are and all that I can learn from them.
October is #downsyndromeawarenessmonth and I have been wondering what I could share. We are super new at this and there are a lot more experienced people sharing awesome things, but one of my friends made such a good point: maybe you know a lot of people with Down syndrome and are totally comfortable around them and their families. Maybe your feed (like mine now :) ) is full of amazing people who just happen to have an extra chromosome. But maybe it’s not? Maybe we are the one family you know or the family you know best and we get to be the ones to introduce you to this awesomeness. Either way, I hope you feel comfortable here. I hope you feel like you can ask any question any time, and I want you to know that I actually LIKE answering questions and sharing!! It shows that you care, and it helps break down the walls and build understanding that we are all just people, with more in common than we tend to believe. So here’s to a month of celebrating my girl, all the amazing people with extra chromosomes, and all of us with our own personal uniqueness! ❤️ #misslydiefaith #downsyndrome#theluckyfew

Cheerleader

I used to think I had a general idea of how to go at life. I mean, you never feel like you have it totally under control, but you more or less have a routine and philosophy of sorts. Maybe you even have some prideful (intentionally or not), subconscious considerations about “how things are supposed to go.” But now, lately, I don’t know. There are still definite truths that anchor me, and thank goodness, but there’s also more flexibility and forgiveness within those truths. I feel inclined to say less. To judge zero. To look my fellow humans in the eye in passing and say, “Hey. You’re here and I’m here and we’re still going at it. GO, US.” And that’s all.

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Tunnels

I haven’t been sleeping well. And by that I mean I haven’t been sleeping hardly at all. We’re still on somewhat of a feeding schedule over here, so there’s that, but even more I wake up multiple times in the night to frantically look at the glowing numbers on our pulse oximeter which tell me how fast Lydia’s heart is beating and whether she’s getting enough oxygen. Then I usually get out of bed to see if the cannula is in her nose because she’s ALWAYS pulling it out, despite our best efforts to prevent that. Backstory I didn’t tell you: We weaned her completely off the oxygen in the hospital, actually, but she crashed hard. It wasn’t something the monitors could tell us was happening. My mom gut + the Spirit kept persistently telling me things weren’t right with some symptoms she was having, even though, as the Drs repeated multiple times, “Her numbers look good!” They ordered an echo “if it will make you feel better,” and it was that extra follow up echo which showed what the monitors couldn’t: that she had crazy high pulmonary hypertension that needed to be treated immediately with oxygen and medication. So, now we’ve been home a month and while it’s gotten better, I still don’t sleep. Because the mom stress is real. This is all just to say that it’s hard. Having a child with critical care needs is hard, although I wouldn’t trade her for anything in the world. 
So this is a “here’s to the light at the end of the tunnel” kind of pic. Because creating pretty things is my safe/happy place. And because remembering to trust the light and count the blessings while walking in the dark is everything.

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Lessons

You teach me so many things. To take one day at a time. To not compare. To celebrate every victory and to shake off the bad days. To keep moving forward. To have courage and be kind. To see and appreciate everyone. To give love freely and abundantly. What exercising faith means. I could go on and on. And these aren’t trite, lip service lessons. No, we’re in the college level course. You amaze me and make me better. That’s all. #misslydiefaith#theluckyfew

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Pictures On the Wall

The night Lydia was born, my water broke and we checked into the hospital full of all the excitement and hope common to parents who have just spent nine months (or longer, as was our case) dreaming of their child to be. During the early stages of labor, my husband and I walked the halls of the labor and delivery wing, gazing at the beautiful pictures of newborn babies that lined the walls while I pushed through contractions. “What will she look like?” we wondered, placing ourselves and our little girl in every image. “Who will she be? What beautiful love will be ours?”

As labor progressed, we left the pictures in the hall and returned to our room. The work was harder, now, but still full of hope and excitement. Once I had my epidural, there was even laughter! And then it was the final push and at last, at last! The baby girl I had been dreaming about for all my life was here!! The nurses weighed her, bundled her up, and placed her in my loving arms. But as I gazed for the first time on that beautiful face, my heart stopped. It actually filled not with hope, but fear. This beautiful, beautiful miracle rainbow baby was not the little one I had expected. She was markedly unique. As I looked on her in shock, no one around me said anything. No one even looked at us. I had to ASK, and with that asking came a sense of shame and brokenness.

There’s so much you don’t know in those first hours during and after a birth diagnosis. You don’t know, for instance, that everything will actually be ok, even though you feel like your world just fell apart. You don’t know that your heart will fill with ten (100?) times the amount of love and even thankfulness that it feels fear in that moment. I know a lot of moms regret the initial feelings and thoughts they had in that moment, but I try not to judge myself too harshly. Because it’s new, and it’s painful, and you JUST DON’T KNOW.

But the emotions are real, and they have to be dealt with. And I was not in a good state of mind when they took my baby to the NICU and took me to my room to “recover.” The first thing that greeted me when they wheeled me into my room was a large picture of a perfectly healthy, typical newborn. It seemed in that emotional moment like an affront. A brutal reminder of what then seemed like a lost ideal. “That’s not my baby,” I thought, in shock.

The whole time sweet Lydia was in the NICU I walked up and down the halls of Mom and Baby from my room to my daughter’s, passing picture after beautiful newborn picture. There were full body shots and detail shots of babies of both genders and every race. But there were no special needs babies. There were no NICU babies with monitor leads or tubes. For the first time in my life, I was part of a real minority group living in someone else’s world. And it hurt.

One of those early days, when everything seemed made of emotion and haze and time, the CEO of the hospital came to us. The hospital had recently received an email from another mother, he said. This family had also had a baby with Down syndrome, just one year before, and they too had a birth diagnosis. While the mother complimented the excellent care she and her child had received in the hospital, she mentioned that she wished for one thing: that there had been a picture of a baby with special needs on the walls. Instantly recognizing the need for change, the hospital considered buying a stock photo of a baby to hang on the wall. But then Lydia was born, and there was the opportunity to make it much more personal. “Would you mind,” he asked, “if we had a picture of your daughter taken to hang on our walls?”

Well, we cried. It’s hard to articulate what that moment and offer meant to us. It meant that our feelings were validated. It meant that even though it seemed like it, we were not alone; another family out there had walked this path, before, and they were reaching out to us in love. Most importantly, it meant that our daughter mattered. Her life was worth celebrating, too. And even being born with a disability, at just six days old she was stepping up, making a difference, and changing the world for the better. “Oh, you thought she was limited?” Heaven seemed to be saying. “No, no, Mom. Think again.”

Photo Credit: Matthew Schramer

Photo Credit: Matthew Schramer

This is the picture that now hangs in that hospital. It doesn’t match any of the other carefully posed and minutely edited images that hang alongside it. It was taken on a hospital bed surrounded by beeping monitors instead of in a studio surrounded by fluffy props. But it is real. So real. That’s my girl, and she, like so many unrepresented babies like her, is beautiful. While it is flattering that my girl is now the one whose image is on the walls, that’s not the most important part. What matters most is that these kids are represented and valued and their lives are celebrated, just like everyone else. It’s a lesson we learned early in this journey, and one I am entirely passionate about.

Through a series of miracles, I was able to befriend online (and eventually meet in person) the mother who sent the email to the hospital, and her darling, amazing girl. We’ve messaged each other almost every day since then, and they have truly welcomed us into this community and offered such love and support. We consider each other dear friends. It is amazing how God will place just the right people in your life at just the right time. That mother not only reached out to me in love in a critical moment; she also empowered me. Through her example and influence she taught me about value and love and advocacy and what being a special needs mom is all about.

This account used to be my photography account, before it got hijacked by more important things. And with this hospital photograph thing I’ve thought a lot about that. I hope, in the future, to use my voice and Lydie’s light (as well as some of her friends’ if they’ll let me) to "put these kids on the wall” as it were. Because now I know what I didn’t before: that they are beautiful not broken, and life with them is beautiful and full of hope and completely worth celebrating.

Is there a picture of a child with critical care or special needs hanging on the walls in your hospital? Write a letter. Give them a call. Let's get those kids up there.
A close friend recently delivered at our same hospital and sent me a picture of her son “meeting” Lydia.

A close friend recently delivered at our same hospital and sent me a picture of her son “meeting” Lydia.

Out

Out and about at the park. We’ve got a whole summer to make up for! 😘

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