You Always Matter

I ugly-cried when Lydia’s teacher sent me this picture and told me it’s been an honor to have her in class the last two years.
I’ve never sent any of my babies to preschool before this one—I just did it at home myself because that’s what our crazy lives required. But now our lives are a different kind of crazy with new requirements & this mom needs all the help she can get. Heaven knows our attendance record was a lot more miss than hit as the medical issues seemed to pile up this winter, but Lyd’s team never stopped checking in on us. When Lydia missed her class program today (due to being up all night 😴), I shrugged it off as “just one more missed thing” and didn’t think it hit me that hard—I didn’t let it hit me that hard. But then that email came through celebrating my girl and her growth and her milestones and her existence, anyway, and I lost it. I lost it and sit here humbled with ugly tears streaming down my cheeks thanking this teacher for maybe the biggest lesson of all. It’s one I’ve learned before, but let’s take a beat and REMEMBER. You matter, Lydie girl. In sickness and in health. In your presence and your absence. On the days you willingly give all the right answers, and on the days you don’t. When you’re loud and when you’re quiet. When you’re happy and when you’re sad. You matter forever and always just for being you. And so we notice and give you the space you deserve. Baby girl, I am proud of you. And to her teacher especially, thank you 💛

Happy Mother's Day 2023!

I was walking Lydia through the children’s hospital once when I saw another mom accompanying her child to an appointment wearing a shirt that said, “Mom AF”. I felt that in my bones 😆
Today at church a woman was catching other women in the back of the room and showing them a gif of Wonder Woman on her phone. WW was throwing punches with lightning coming out of her bracelets and the woman was saying “This is YOU!” She caught me, rocked my hand, and told me, “You are a MOM.” And since I had just wrestled Lydia for an hour exhausting every toy in my bag (and every non-toy, too), I felt that as well.

I don’t know what this day holds for you, but if you’ve ever loved a kid and have some stories to tell from that wild ride, I submit that those two messages/badges of honor above are meant for you, with love, too.

Happy Mother’s Day 💛

Happy World Down Syndrome Day 2023!

Last week in church a woman approached me with a folder full of pictures. They were pictures of her sister, who had Down Syndrome. Her sister at five, the same age as Lydia. Her sister around 18 in a beautiful senior portrait. Her sister at age 50 in a stylized shoot fulfilling a lifelong dream. And finally, her sister leading a group in music, beaming from ear to ear. It was such a beautiful GIFT to see those images and consider the future. For Lydia’s birthday a couple weeks ago, we got covered in chocolate cream pie and danced to Journey. Today she sang and danced with me to Taylor Swift. Last night I watched her take Dan by the hand and lead him through her bedtime routine while his heart melted on the spot. As we bid the boys goodnight the other night and they headed off to their rooms, we heard a garbed but still discernible, “Bye! Love you!” ::kiss kiss:: 🥹 Her favorite (and our favorite) thing is to throw her arms out wide and ask in her tender high voice, “Hugs?!” Often when she’s a complete mess/it’s least convenient 🤣 No one has ever turned her down, yet. I’m tearing up this very second just thinking about what a complete GIFT of a human this angel Lydia is and how very grateful I am to have her. How I hope that we as a society SEE her and other individuals better for who they are and all the remarkable ways they can contribute and the things they have to offer. I haven’t stopped being amazed and she hasn’t stopped finding ways to bring us joy, yet. Happy World Down Syndrome Day. 💛💙

Unexpected Flashback

These things always catch you off guard, & it’s been such a busy day. We have literally jumped from thing to thing without stopping. Fresh from nephew’s b-day party & headed into son’s basketball game number 2, a woman with beautiful, brown, curly hair caught me by the elbow, her eyes smiling from me to Lydia & back again: “Remind me of your name?” “Annie,” I replied. And she explained, “I was a nurse manager in labor and delivery…”

The whole world stopped. She remembered Dan. She remembers Lydia. Lydia who became the first baby with medical or developmental differences to be pictured on the walls of our local hospital’s labor & delivery and mom & baby floors. Lydia who broke my heart wide open & now holds a sacred, cherished space up on those hospital walls honoring all those who came before & will come after her. Lydia who shines so that other broken-hearted parents can hold their new babies to their hearts, square their shoulders, & hear our welcome message to their angels loud & clear: “You are worthy, you are loved, you belong, you belong, you belong.”

Lydia is five now, I was able to tell our nurse, who couldn’t believe it. She no longer works in L&D, but she still remembers our girl and is touched by her. These things are like that—utterly life changing in a way you can’t explain. And it’s not because of us—it’s because of these T21 kids; the nature of their coming and being and all that entails.
Dan still has a list of our favorite nurses on his phone. We pulled it up and looked at it after the game had started and we’d found our seats. I still have deeply personal & emotional letters I wrote to several of them, kept in a journal somewhere. Trauma has robbed my memory of many of their faces, but not of our conversations, their kindnesses, or their life-giving love in that most tender time.
Five years but I remember, & apparently others remember as well. Hopefully the world is a little bit better because one little girl showed up & rocked a few boats 5 years ago; I know mine is. Harder, but better. Fuller, more understanding, more diverse. Stronger, but softer. A million little things.

It was awhile before I could choke it all down & focus on basketball.

The Hair

“Rapunzel & the Super Scary Sensory Monster”
That would be our children’s book. Maybe I’ll write it one day ::sigh:: This girl who LOVES to have her hair down and cries when I braid it or pull it back, but who HATES to have it combed or dried.
Our latest post-bath time routine involves terrified full-body bear hugs (legs and all) while I blow-dry her hair and constantly reassure her, “Mama’s got you.” These sessions simultaneously break and melt my heart (almost literally as it’s really hot with all that hair, hot air, hugging & wrestling going on 😅). But they mean a lot to me and reaffirm in a new and different way the sacred space I hold. I am her safe space. …Oh that’s a heavy place to hold. But we keep holding it. We keep hanging on to each other, sometimes like we’re hanging on for our lives, sometimes just breathing each other in. I’ll do my best to keep you safe, you’ll do your best to keep me grounded and laughing. This is the sometimes dance, sometimes full-body terrified bear hug. “I’ve got you, I’ve got you;” on and on we go.

Anticipating 5

My baby turns five this week. 💛 This is not the birthday post—this is the pre-birthday post. Because these milestones, they involve a lot. We are going to celebrate her so hard. Her miracle life, all her favorite things, the absolute joy that she brings us every single day. It is going to be a celebration of love; I’ve been preparing for weeks.
Meanwhile we’re also attending to the other birthday things… The annual IEP, the doctor check ups and labs. This year there are some special evaluations and a potential heavy new diagnosis on the table as we prepare for her to enter kindergarten. My girl is a brilliant ray of light and joy. She is also largely nonverbal and in need of more support. I celebrate her at the same time I in equal measure worry about her… the scales rocking back and forth on their wild ride throughout our days.
As I sat with her on my lap recently, I felt the daunting shadow of uncertainty cross our future once again. What will another diagnosis mean? How will it change things? How will we carry it?
I don’t know the answer to those questions—I never do. What occurred to me in that moment was that those answers, those questions even, don’t matter. She will still be Lydia. And she is perfect.

Whose Cause is Love

For those who wear red in February,
Mis-matched socks in March,
Masks in winter or when you are sick,

For the ones who walk or run
for a cause—any cause—
Whose personal Cause is Love

For those who wear a necklace or shirt made with someone in mind—or no token at all but
Teach children and others to See and Include

You are the Ones
the True, the Powerful
The Difference Makers

We love you. Thank you for being Our People. ❤️♥️❤️

Broken Hearts to Mend

My little girl full of light. It’s a wonder to me that her tiny body was born with a broken heart: 3 holes and a bicuspid valve. Two surgeries and a severed electrical system now powered by machine. Medicine, men, and miracles saved her. Our lives have and always will be full of appointments for the broken-hearted. And yet, and yet… she has the strongest, purest, most fully functioning & perfect heart of anyone I know. Far healthier than mine. Far closer to God. How different the measuring sticks are for body and soul. I believe in the grand scheme of things, when Lydia was born we both received the same diagnosis: you were born with a broken heart. One physical, the other metaphysical. This is what it means to be alive. The same surgery that saved her life and set in motion her journey set in motion in new and more advanced ways her mother’s. A different heart, a different system, different holes needing mending; forever intertwined.

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.

Post Op Day 2 - Off the Vent!

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I cried a lot of tears, today. That dang vent tube finally came out. I wish I could convey the fear that thing instilled in me—more than the surgery. I’ve known too many kiddos who have struggled with getting off the ventilator. One who was lost because she couldn’t. Every day longer on the vent comes with a price. While I suppose Lydie wasn’t on it for an extremely long time, the terror in my heart and the delays along the way made it feel like forever. And to watch the monitors knowing that my child was not breathing—she was dependent upon a machine to breathe FOR her; to force life into her...

I asked God for some miracles, today. When her sedation wore off enough for some sleepy smiles to sneak through, that was a gift. When it wore off a little more (gotta be awake to want to breathe, apparently) and those big blue eyes that I haven’t seen for days locked on me, it was a bigger gift. “Hi, Baby!! Mama’s here for you!” And when that dang scary but life-sustaining tube came out and her low-muscle-tone, swollen airway held and filled with THE MOST BEAUTIFUL hoarse little cry I have EVER heard... that was a miracle. I am still crying. Once again, every day, a thousand times a day, God is good. 🙏🏻 #misslydiefaith #openheartsurgery #heartwarrior #theluckyfew

Post Op - Next Day

Little Lydie is doing well, today! She is making small but important strides. We started feeding her (yellow nose tube) today and I am sure that feels good! You’ll notice she still has the ventilator tube in her mouth. That was going to come out today, but girl took things into her own hands and extubated herself at 4 AM last night. Ouch, but can’t say I blame her—no one likes a tube in their throat. The nurses were right there to put a new one in and she’s fine, but did cause some swelling to her poor little throat so they are giving her an extra 24 hr for that to calm down. Also she is well swaddled, now 😉 They’ve been weening down the vent today in hopes of extubating early tomorrow, so both those tubes could be gone 👏🏻👏🏻 Her heart looks good and some of the things we thought would be huge problems she has just cruised through! 💪🏻🙏🏻 Her heart rhythm is still a little off, so we are hoping that issue resolves in the next couple days 🙏🏻🙏🏻🙏🏻 All in all she is doing well. It’s hard to see her like this, but we stroke her and talk to her and keep in mind that this is all baby steps to a better life! Huzzah for modern medicine!!!

 ❤️

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Tiny girl, many machines  

Tiny girl, many machines  

The hospital IT system went down the day of Lydie’s surgery so Dan spent the whole next day putting out fires and responding to requests for his dept. Because he had nothing else to stress about, already 🙄❤️

The hospital IT system went down the day of Lydie’s surgery so Dan spent the whole next day putting out fires and responding to requests for his dept. Because he had nothing else to stress about, already 🙄❤️

Heart Failure Part 2

Ok, I was able to get Lydie into the cardiologist, last week. He talked me down from Defcon 5. :) She is actually in heart failure "But that's just what we call it...." (Relax, Mom?? Right.) Her heart is just working really hard and it is affecting her body, as I said before. But, it's also not uncommon, and it doesn't mean she's going to die or anything. He gave us some medicine to get rid of some of the weird symptoms that were alarming me and the pediatrician. Hopefully they will help her body AND she'll start to eat better. We also quadrupled the amount of formula we're adding to her breastmilk. So basically she gets a chocolate shake calorie haul every meal. We have 2 lbs to gain optimally for surgery, but if she doesn't respond to the medications we may look at moving the surgery up, anyway. The feeding tube thing is always an option if she stops eating enough, but he didn't think they would admit us to the hospital for that clear until surgery--she'd just be on one at home. In any case we're trying to avoid it. They tell me that eating is like running for her, and she just does it 7-8 times a day for 60-90 min... no big deal! Poor thing. She's tough! She really really REALLY can't get sick, so nobody visit us ever, and someone adopt the two boys, k? Haha. Actually I just bought some facial masks and am about ready to say nobody but Mom and Dad can come in Lydie's room. An illness would be 1) super scary and 2) put the surgery back TWO MONTHS. So we're doing all we can to avoid that. We have not scheduled the surgery yet---they usually schedule them 6 weeks out, though, so he told me it could be "soon." I have my next appointment with the pediatrician in 2 weeks and the cardiologist in 3, if all goes well. 

In positive news, I asked, again, what things will look like for her after the surgery, and it's super optimistic. She shouldn't be any more susceptible to illness than a regular kid with DS, which is a huge blessing because some of these heart babies are very very vulnerable all their lives. And the problems that she has are fixable. They keep telling me that, and after reading about what some other families have to live with--I will TAKE IT. Man, life can be really hard. So, anyway, onward we go! Thinking chubby, healthy thoughts!

It's crazy, but it won't last forever. We're going to get this girl through this and she's going to change the world. She already makes ours so much brighter. Like, seriously. She's the best, cutest, happiest baby. 

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The Playlist in My Brain #2

I spend a lot of time listening to and pondering music, these days. During those long and sometimes frustrating feedings, singing or listening to music calms both me and Lydia. When I write these posts, I envision someone reading the description & excerpts, then listening to the song, one by one. Whether that’s what actually happens or not is up to you, but that’s what I had in mind if it helps these posts make sense. I love poetry, so this series comes in part from that. This is the "moving forward" set of songs and the ones that help motivate me during the hard moments. Truthfully, today was a frustrating day, so here's to sending good vibes out into the universe and hoping that tomorrow goes better. 
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For acceptance. For driving down the canyon with your arm lazily riding on the wind out the window. For parking and sitting on a remote rock with your eyes closed while the sun warms your face. For finding peace with the here and now and realizing that life is beautiful, even with the hard. For seeing and appreciating everything with new eyes.

Little Wonders - Rob Thomas

Let it go
Let it roll right off your shoulders
Don't you know
The hardest part is over?
Let it in
Let your clarity define you
In the end
We will only just remember how it feels

Let it slide
Let your troubles fall behind you
Let it shine
Until you feel it all around you
And I don't mind
If it's me you need to turn to
We'll get by
It's the heart that really matters in the end

Our lives are made
In these small hours
These little wonders
These twists and turns of fate
Time falls away
But these small hours
These little wonders still remain

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For Dan, who knows. 
 

If That's What it Takes - Celine Dion

You're the bravest of hearts, you're the strongest of souls
You're my light in the dark, you're the place I call home...

Through the wind and the rain, through the smoke and the fire
When the fear rises up, when the wave's ever higher...

When the storm rises up, when the shadows descend
Ev'ry beat of my heart, ev'ry day without end...

I will lay down my heart, my body, my soul
I will hold on all night and never let go
Ev'ry second I live, that's the promise I make
Baby, that's what I'll give, if that's what it takes

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For Lydia. A promise.

I Won't Give Up - Jason Mraz

When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold

And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?...

I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make

Our differences they do a lot to teach us how to use
The tools and gifts we got, yeah, we've got a lot at stake...

We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not, and who I am...

We've got a lot to learn
God knows we're worth it...

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

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From a mama to my baby girl. For the ten sizes my heart has grown since you came into our lives. For the tiny sacred moments that make everything else worth it and my awe at the depth of you. For love and peace and a very bright future.

Lullaby - Dixie Chicks

They didn't have you where I come from
Never knew the best was yet to come
Life began when I saw your face
And I hear your laugh like a serenade

I slip in bed when you're asleep
To hold you close and feel your breath on me
Tomorrow there'll be so much to do
So tonight I'll drift in a dream with you

As you wander through this troubled world
In search of all things beautiful
You can close your eyes when you're miles away
And hear my voice like a serenade

How long do you wanna be loved?
Is forever enough, is forever enough?
How long do you wanna be loved?
Is forever enough?
'Cause I'm never, never giving you up

The Heart of the Matter

I’ve never taken an anatomy course. English teachers don’t need that. I can diagram a sentence, but I cannot dissect the human body. I mean, I know my basic bodily systems and where major organs are located (...I think...), but ask me to distinguish between the heart’s right atrium and right ventricle and I’ll change the subject real fast. Because I know those things are there but exactly where and what they do besides just ‘make the heart work’...?? I have no idea.

Well, had no idea. Until Lydie was born.

According to one book I read, about 40-60% of people with Down syndrome have heart defects. Whatever the exact statistic is—it’s high. So checking out Lydia’s heart was one of the first things the doctors did. They couldn’t hear any murmur, and our first x-ray looked good. In all the prenatal ultrasounds with MFM, her heart looked perfectly healthy. It wasn’t until we got our first echocardiogram that we learned that Lydia does indeed have heart defects. Four of them.

First echocardiogram, five days old

First echocardiogram, five days old

When you’re in the NICU (at least in ours) and they run big tests like that it goes like this: tech comes and conducts echo on child. Tech forwards test images to off-sight cardiologist. Tech speaks with cardiologist and asks if more images are needed. Tech leaves. Cardiologist reviews images that day or maybe the next. Cardiologist sends report to hospital which is reviewed by the visiting pediatrician who then conveys the information to the parents. This is all to say we 1) had to wait for the results and 2) got the results through a pediatrician reporting the cardiologist’s findings. Which makes it hard to ask questions and get detailed answers.

Dan wasn’t there when the pediatrician came to tell me the results of the echo. Wish he had been, since Dan HAS taken anatomy and probably could have explained it all to me. As it was, the soft-spoken pediatrician gently wrote down a list of conditions they had found, and when I looked confused drew a diagram for me. I recognized a few terms: “bicuspid valve” and “defect” being the primary ones. I knew what we were talking about was a big deal, but the pediatrician also said things like, “shouldn’t cause an immediate problem,” and “could fix itself over time.” So in my naïveté, I wasn’t as concerned initially as I perhaps should have been. Plus we were literally on our way out the door to have Lydia’s pictures taken for the hospital (more on that later), and I was running on the classic new mom quota of zero sleep, so my mind was a scattered mess. I’ve learned that it takes my uneducated self a couple exposures to medical information before I GET it. I’ve also learned to ask a lot of questions, take notes, and google the heck out of medical terms.

Anyway. With three echos, an EKG, an x-ray and a dozen exams in the books, this is what we know. Lydia has a bicuspid aortic valve, a VSD (hole between two ventricles), an ASD (hole between two atria), and an open PDA (tube that should have closed right after birth). She will need open heart surgery, and we are planning on that occurring sometime this summer.

It is a major blow and continues to be an enormous source of stress for me. Once again this is not the way things were supposed to go and is something you would never want your child to have to face, but here we are.

Having said that, the surgical procedures that they will perform on her are very common and straightforward, and we have access to an outstanding children’s hospital and surgeons, for which I am grateful.

It’s just open heart surgery. On my baby.

I wish I could leave you with a peppy, optimistic view of the thing, but it all weighs pretty heavily sometimes. Not all blogs have to have a moral, right? Especially the kind of blog that is unfolding in real time as you learn to deal with life and that you write so people can know what you’re going through but you don’t have to experience the pain of explaining it a million times?

Having said that, the prognosis is quite positive and the doctors tell me that once she has the surgery, she will likely lead a normal, active life. Her heart condition does affect a number of things right now—primarily energy levels and her ability to eat/gain weight, but we’re working through it. I will be glad once we have the procedure done and it can help her.

The last two months have tested me beyond anything I ever imagined. Things I never considered happening in my life plan are now realities. I’m not a natural crier, but I tear up more than usual. I eat ridiculous amounts of dark chocolate. I pray, I study, I call my mom, I avoid awkward conversations with strangers (and sometimes anyone), and I crash in bed at night. Sometimes there is so much to feel that I just don’t feel anything.

But I also sit and hold my baby and stroke her soft head and force feed her a million times a day so she can gain weight and just try to take it one day at a time and be grateful that we have her. Because she’s the sweetest, her smile is adorable, and her snuggles fill my heart. Sometimes when she’s sleeping I stare at her long eyelashes, analyze the red tint to her hair, or just listen to her breathe. In those moments I do feel. In those moments there’s joy and even peace.

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