Went to the children’s hospital today for a routine blood draw. Was DREADING it. Last time we had blood drawn we required the ultrasound machine because baby girl’s veins are so teeny. There’s few things worse than holding your baby still while she’s tortured over and over. So when I walked into the hospital with my heart in my stomach and saw a basket full of @littlepoppyco bows for the kids & was invited to take one, I almost cried. Because this mama & babe needed some extra love, today. This is not the first sweet, seemingly simple but emotionally huge thing kind people have done for us, and I want to do a series of posts thanking all the good souls out there who give to brighten someone else’s day. It truly makes a difference. 😭❤️❤️❤️ Related note: the medical staff was AMAZING and the whole thing went completely smoothly. So grateful for the many talented people who love our kiddos in their own unique ways.
Cracks
You know the phrase “something fell through the cracks”? Well, I’ve been thinking about that. There’s the deck/boardwalk stage of life where, yeah, you might drop something every once in awhile and it rolls away from you and tumbles down a crack, but those cracks are pretty tiny, so chances are you just drop the thing, chase it, dig it out of the crack, and move on. Then there’s the railroad-bridge stage of life. The cracks are a little bigger. If you drop something now, you probably don’t have time to pick it up because there’s a train coming, so you let it fall into oblivion and keep rattling down the road at breakneck speed, trusting all those steel supports and trusses to hold up what’s important. Then there’s the “Tarzan swinging from vines in the jungle” stage, where the whole world IS a crack, and you’re just swinging through, grasping whatever you can get your hands on/every rope God throws you, and hoping you stay alive.
I think we’ve traveled the gamut this year and are now somewhere between stage 3, headed back to stage 2, hopefully someday stage 1. Maybe. 🤔
Deep motivational thoughts by me as I lie in bed listening to kids who are up too early and battle-planning my day. Also, maybe that’s the Christmas card I’ve been trying to write. 😂👊🏻
On Mountains
Once, a few years ago, I had a two and three year old and we were about to move across the country for grad school. We had one month to go and were neck deep in preparations. With this incredible timing, I got the sickest I have ever been. I literally could not hold my own head up for more than 15 min. A trip to the doctor revealed the cause: pneumonia. What?! How could this be?! It was JULY! Why now?! How would I take care of myself, the kids, and prepare to move?! The doctor prescribed some strong antibiotics which I began to take immediately only to find out I was severely allergic to them when I broke out in full body hives. Like, even on the bottoms of my feet 😳 I remember lying in bed, itching and coughing and miserable and just having to laugh-cry because HOW could it be this miserable?!!!!!!!
Whenever I hit a low point—a perfect storm of hard things—I remember that moment. It always makes me laugh (cry) because life is just so dang crazy and hard sometimes, for no apparent reason.
But it is also good to remember the days my husband was able to take off work; my mom who drove 8 hr to help (twice!); the neighbors who watched my kids; and the miracles God worked out for us. I healed eventually. Other people packed for me because my lungs took months to heal. The kids were fed and loved and stayed healthy, and we made it to the other side of the country and that hard thing.
This has been a year of hard things. More than I’ve shared. And it’s not stopping. But neither are the miracles, so here is to prayer and grace and service and survival and eventually reaching the other side of the mountain. ❤️🙏🏻🙏🏻🙏🏻
Thanksgiving
Family dr selfie! We spent the day nursing colds, going to the pediatrician for expensive shots, and driving 45 min to the one pharmacy that had the medication we needed in stock. We don’t really have plans for Thanksgiving tomorrow, just being at home together and my sweet mom is bringing us dinner since we won’t make it to any festivities. I admit, it’s not what I thought Thanksgiving would look like. It hurt to miss the Fourth of July, but at this point in the year, we’ve missed holidays and church and birthdays and weddings so I’m just like, “Meh, par for the course.” It sounds super depressing, this year of “missed” things, until I realize all that we’ve gained. It’s like we’re on a study abroad where all the usual activities and routines are suspended for a short time while we gain a new perspective in a different place. And what a perspective. Yesterday we were sick sick sick, but as I sat there rocking my sleeping baby and looking at my husband resting on the bed, I realized this isn’t the worst thing ever. In fact, I was grateful for that beautiful moment for many reasons. (Like how no one was in the hospital!!!) Not because I’m some kind of unnatural super positive goody goody—believe me, I did my fair share of complaining and asking “Whhhhyyyy?!” yesterday, too... but I am amazed that when you have to trim even what you thought were the indispensable happy things (like holidays), as long as you are together and there is love you’ve got something to be thankful for. “And the Grinch, with his Grinch-feet ice cold in the snow,
stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled 'til his puzzler was sore. Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store. What if Christmas [or any day], perhaps, means a little bit more.”
Rollin'
Between Cannulas
Heart Warrior
Precautions
Whenever anyone gets sick around here.
Car Ride
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
Backseat rebellion.
#dontmakemecomebackthere #misslydiefaith #O2life #betweencannulas
A few of my favorite things.
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
Ok. Who missed this face?
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.
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.
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
FACE!
In case you ever take seeing your kid’s whole beautiful face for granted... don’t. 😍 #misslydiefaith#betweencannulas #goals
