The Middle

I'm running out of words. Well, actually, there are plenty of words--the essays come spilling out of me at 4 in the morning while I stare into space willing myself awake and praying for my baby to eat. But those aren't the kind you share on the Internet. Sometimes when you're too honest, people get weird.

And frankly, I don't owe those people anything. I think it's important to remember that. But I do owe myself some things, and self expression is healing for me. I also think about the other mothers going through similar things now or in the future. The least I can give them is honesty and an accurate picture. Some of my greatest comfort these days comes from reading the words of other moms who have gone through the impossibly hard and made it. 

The problem with that is, you have to write about the impossibly hard, too.

So here we are. 

First, I'm tired. There's any mom tired, there's mom of a newborn tired, and then there's whatever crazy planet we're on tired. And that's WITH all the help flooding in from family and friends. 

This is hard. I've done some hard things in life, but this has got to be the hardest. Watching my baby struggle like this is hard. While she isn't doing horribly (thank heavens), she isn't doing well. Sometimes it's scary. And for a mother, it's heartbreaking. 

We, and usually I, feed her every two and a half to three hours (four at night), always for at least an hour, sometimes up to two at a time. She gets down 45-80 mls or about 1.5-2.5 ounces. We're supposed to hit a minimum of 15 oz total a day, but for a whole week we were well under that. She weighs 10 lb 12 oz, which is actually up from what she lost during our awful feedings last week. She eats as much as a NEWborn, as often as a newborn, with the skill and stamina of a premie, at 3 months old. 

On good days she's observant and communicative, and her grins are HUGE. Happiness just streams from her. On the not so good days, her eyes are listless, her skin is pale, and her smiles are few. Sometimes she cries, except she doesn't have much energy to cry, so she either sounds like a normal baby who burns out really fast, or she just emits these barking, abbreviated calls of distress, because that's all she can muster. I've seen her hands turn blue. Sometimes she coughs and it sounds scary because there is fluid in her lungs. Always, when she breathes, her chest retracts because it's just so hard. And even though the doctors are watching her closely and she's on some medication which is starting to help a bit, I know and have a moment by moment visual reminder: this is no joke.

I have a special connection with this baby. I can look in her eyes and KNOW her. Sometimes, when she is struggling to eat and fussing and upset, we'll lock eyes and I will sing to her. And in that moment I see and feel her latch on to me for strength, desperately reaching out to me and pleading, "Can I do this?" 

"You can do this," I tell her. "We can do this."

She believes me and pushes through. I watch her do it. There's nothing more humbling or inspiring than that. She is a warrior.

Some days, in between feedings, I fall on my knees and beg God for help. Often before feedings, and during feedings, I pray that she'll be able to do it. I pray for her, I pray for me. I pray for strength and for a bright future day when my baby girl can be just a baby girl. When we'll blow bubbles and buy headbands and go outside. When I won't fear every second that maybe I should call the doctor NOW and make him fix her!! Hurry, fast, before something really bad happens.

It's heavy. It's heavy and it's hard and it's sacred.

I remember hearing once that when George Washington was leading his farmer troops through the snow in the winter, they left bloody footprints behind them in the snow. I've heard similar stories about Mormon pioneers. People hurting and giving everything they can for a cause they love. Sometimes, I marvel that while I'm walking around in Target, there isn't a visible trail of my own bloody footprints marking my every step. Only it's my mama heart that's bleeding out--all the time.

I know. Dramatic. And I said I wouldn't vocalize my 4 AM thoughts. Sorry. To be fair, I don't go to Target at 4 in the morning.

But back to the sacred. 

You know the cheesy and over-quoted Footprints in the Sand poem? The one where Christ tells the narrator He carried him through life's hard spots? It's less cheesy now, and more a living principle. Because no one can do this on their own. Because the only reason I can get up in the morning and face the day is because Someone Else gives me the strength and grace to be able to do it.

Do you know what's amazing? What's inspiring? What's incredible?

It isn't me. 

What's amazing is how many people can come together to help you when you need it. How many people love your daughter with all their hearts, even if they haven't met her.

What's inspiring is learning first hand how, "The worth of a soul is great in the sight of God"

What's incredible is knowing your own limitations--your complete dead end, ain't goin' any farther than this, I CANT'S; and watching God redefine them by adding His CAN. 

We're in the hard part. I know that. The success rate for these kids after open heart surgery is amazingly positive. Like 99%. Her defects are fixable. I thank God for that. She will learn how to eat, come off her oxygen, and be her happy, full-spirited self. We're just in the middle. In the middle with our eye on the horizon, trying not to get sucked down amidst the progress we can't see that we're making. While the whole time, God truly carries us. That is a truly sacred place to be.

"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. ...For I the Lord thy God will hold thy right hand, saying unto thee, Fear not; I will help thee." My all-time favorite scripture: Isaiah 41:10 & 13.

And an abbreviated version of this quote lives on my wall and is making its way into my heart:

"If we give our heart to God, if we love the Lord Jesus Christ, if we do the best we can to live the gospel, then tomorrow—and every other day—is ultimately going to be magnificent, even if we don’t always recognize it as such. Why? Because our Heavenly Father wants it to be! He wants to bless us. A rewarding, abundant, and eternal life is the very object of His merciful plan for His children! It is a plan predicated on the truth “that all things work together for good to them that love God.” So keep loving. Keep trying. Keep trusting. Keep believing. Keep growing. Heaven is cheering you on today, tomorrow, and forever."

Tomorrow the Lord Will Do Wonders Among You - Jeffrey R Holland

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. 

Eating and Marathons

They tell me that eating is just like running for her, and she does it 7-8 times a day for 60-90 min each time, all so we can get in those precious 15 ounces/day. My little warrior. 

Heart Failure

Thank you to all who have been praying for Lydia. She needs our prayers and Heaven’s blessings now more than ever. At our appointment with the pediatrician on Friday, we learned that she has gained weight (!!!) but that she is also in heart failure. This is not unexpected due to her heart condition, but is hard news. Essentially, her heart is working too hard, cannot continue to do so, and her body is being affected. She is experiencing difficulty eating, increased difficulty breathing, and some other symptoms. We see a cardiologist next week.
As miserable as those symptoms sound, she continues to try to eat, shows awareness, moves her body, and gives us giant grins when she sees us. The light and joy in her special spirit will not be suppressed. HOW WE LOVE THIS GIRL!!
Given the stress on her heart, I would assume her surgery will be sooner than later, but that will be up to the cardiologist. Some children endure heart failure for weeks before surgery—it all depends. We will keep you posted. Thank you eternally for your prayers. We could not keep going without divine aid or the earthly angels Heaven sends us. I marvel that in the midst of so much heaviness and sorrow we can feel so much light and love. I truly don’t think it has anything to do with us, but is more a sacred opportunity to witness and experience Heaven’s love and power. 
We love you. We love Lydie. We are so grateful for God’s love and presence in our lives. We are blessed.

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. 

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

---

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

---

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

---

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

Service Idea List

We have been blessed by so many who have reached out to help us during this difficult time. It has been so humbling to receive service like this. There have been too many things to possibly write down (or remember) for one blog, and knowing that I have somewhat procrastinated writing! But I just know there is a host of people out there who, LIKE ME, when they watch someone they love go through something hard, want to help, but don't know how! So here is a list of some ideas. Some are things that I have learned would be nice, and some are things we have been given that I could never have thought of by myself and that have been such a blessing to our family! Know that if you have done something for us and it's not included here, it's not because we didn't appreciate it!!! It's either because I'm trying to write a generic list, and some of those sweet things are personal and I'm holding them close to my heart; OR because I'm running on next to no sleep and consequently some things just fall out of this brain. By the dozens. hah!

Food

Let's cover the big one, first. Food is the universal service love language, right? And rightly so! We all need it, all the time! We have loved:

• Homemade meals
• Meals picked up from restaurants or ready-made from the grocery store
• Freezer meals
• Money for ordering in.
• The golden combination of a meal that can either be eaten immediately OR frozen according to need. Because sometimes people are bringing all the food and you NEED it, but you can't eat it all at once. So the freezer is a life saver. 
• Grab and go snacks. The truth of the matter is, while I usually sit down for dinner, lunch and breakfast are much more haphazard. I'm trying to feed the baby and watch the boys and get kids off to school etc etc etc... ain't no momma got time to eat! So healthy snack options (or lets be honest, unhealthy even) have been a life saver and something I never would have considered giving anyone, before. Think stuff like fresh fruit (or fruit salad), bagels, muffins, rolls, yogurt, cheese sticks, almonds, pretzels, washed peas/carrots, etc. Heck, cold cereal! And I will never say no to some dark chocolate. ;)
• We appreciate every single thing no matter how or when it comes. Truly. Bonus points to those who send it in disposable dishes that don't have to be washed or returned!

It is never too late to offer someone a meal. Really. Just ask them what they need and when they need it and they will use it and bless you forever. 

Services

• Going to the grocery store/running errands. One time I was out of toilet paper and someone asked if they could pick anything up for me. HUGE! Sometimes I send my mom with some cash and a grocery list to pick up stuff for me. Even if I don't need anything, I am so grateful when people ask! And Venmo and online grocery ordering services are great tools, too. 
• Having a neighbor return dishes/deliver thank you notes for you.
• CHILD CARE. This has been CRUCIAL for us! Lydia is connected to an oxygen machine and we have a two room radius. I can take her outside but it involves loading her up and ordering oxygen tanks and exposing her to germs... so we don't go out, much. But I also have two active young boys who plainly can't live healthy, sane lives in just two rooms! So we have worked out a daily schedule that provides them some stability and home time, and also some outside/play time. We're fortunate to live by family right now, and grandmas take the boys almost every afternoon. After living out of state for the majority of our married lives I understand that this is a complete MIRACLE and a resource many may not have access to. But playdates even just every once in awhile can really help both mom and the kids. If you do have to come up with a long term child care solution, it is good to talk with the care provider (be they family or professional or whatever) about things that are important to you--behavioral expectations, screen time, appropriate activities, routines, etc. so that you're all on the same page and the kids have as much consistency as possible. Even offering someone a new movie to borrow or a new toy to play with so they can have something to do while Mom is busy is huge. 
• Shuttling. My kids have places to be, and getting them there can be a challenge. Again we've recruited help from others to shuttle kids to their daily activities. I'm totally up for buying a cheap booster seat for your car or paying you gas money to get them where they need to be. This has been huge for us.
• Help around the house. It’s humiliating for me, so tread carefully here. Offer but don’t push. I asked my mom for, I’m pretty sure, the first time in my adult life to fold some laundry the other day and she did and dang it if it wasn’t wonderful to not have to dig through the basket of wrinkly clean clothes for something for the kids to wear! I’m learning to accept help, too.

NICU Specific

• Meals. It is so hard to eat when you're in the hospital all day. You're running on a crazy schedule and you may or may not be sick of/able to afford cafeteria food all the time... Sack lunches/snacks dropped off at your house or the hospital entrance? Amazing.
• Child care. Again. 
• Something I learned is invaluable when your baby is in the NICU--button up clothes! There's so many cords and monitors and wires and stuff, and you have to be able to thread them all through to the baby. Once, Lydia had a diaper blowout. So you just change the kid's diaper, right? Except she's in a onesie, and whoops, there are monitor leads on her chest that thread out her onesie at the bottom. So I'll just avoid those so they can stay plugged in and lift the onesie up over her head... except, nope! There's the oxygen tubes! It was a mess, you guys. Haha. Snap up clothing. You'll never look back. 
• Thoughtful extras: Lotion. Your hands get TORN UP in that place because you're washing them all. the. time. Lotion is amazing and such a simple gift--just pick a nice scent-free kind (because, sensitive babies). They gave me Jergens Ultra Healing and it is amazing. Another good idea is a journal. Itunes card or audio books or just plain books are also awesome. Several people gave us blankets and I brought some of those because it was something personal, homey, easy, and useful that I could add to her space.

Gifts

• Oh man. Anything. Are you kidding me? My mom brought me a tiny little paperweight pot of fake flowers when we were in the hospital and it cheered my soul. Others have brought bouquets of cut flowers that brightened dark days. Some have left treats on our doorstep. We have received more than one check. People are amazing. 

Other (The stuff that doesn't necessarily fit under a specific category, but has meant a lot to us.)

• Every single text, phone call, email, social media message, etc. expressing love and support. They are invaluable. In the beginning, especially, I cried over every. single. one. Even the ones from strangers. They meant that much to me. They let me know that I was not alone and that I was loved. That my baby was loved. That people are praying for us. It doesn't matter what you say---I've been sent jokes, tender essays, links to encouraging videos, personal thoughts, spiritual messages... It is all meaningful and appreciated, often for the content but mostly because you were thinking about me and loving me. 
• The "Get out of jail, free" card. Ok, that's just what I'm calling this one. It's when you do something nice for someone with no expectation or offense taken if they thank you or respond to you immediately, after three months, or never. It is hard to appropriately give back when you are given so much, and you have so much life still on your plate. My heart has ACHED over the emails I haven't sent, the thank you's I haven't written, and the angels who have meant so much to me but haven't been given enough credit!! Sometimes, especially in the beginning, I would be so emotional over receiving a thoughtful note that I COULDN'T respond. It was just too overwhelming and I had nothing left to give. But those notes still meant the world to me! I just needed a little extra grace and forgiveness over the responding to them. If someone started a message with "You don't have to respond to this, but love, love, love, love..." I was especially grateful. 
• Those who check in on a regular (not bug you everyday, but more than just a one-time thing) basis. It just shows a special amount of love and care and thoughtfulness.
• Those who have held my baby or just looked at a picture of her and told me how wonderful she is. Every mother needs to hear that. A million, trillion times. And for a mother who was shocked by a birth Down syndrome diagnosis... a mother who is fearing whether the world will ever accept or love her child... someone telling you--and meaning it--that your child is beautiful and special and precious and loved? Priceless.
• Prayers. This one is going to get a blog of its own. Because this is the SINGLE MOST MEANINGFUL AND IMPORTANT AND HELPFUL THING ANYONE CAN DO. Truly.

Really, no act of service is small, as long as it is done with love and thoughtfulness. It may be simple to you, but it will be huge to them. It may be inconvenient to you, and they will know it and it will be huge to them. I have prayed a thousand prayers for blessings to fall on the heads of those who have reached out to us in any way. Your love matters more than how you give it. Just do it. 

I'm sure that I'm missing a million things. For all you have done, for all that you do, we thank you and we love you, forever.

Weight Check

We had a rough day at the pediatrician, today. In spite of our best efforts, Lydie has only gained an ounce in three weeks. We’re now adding formula to her breastmilk to try to get more calories in her. We go back in a week and a half to check her weight.  She is slowly becoming more symptomatic (slow weight gain, harder to breathe) due to her heart defects. The hope is that we can wait as long as possible for surgery so she can get bigger which makes things safer and easier, but if her symptoms continue to worsen, they’ll have to move the surgery up. So, extra prayers that baby girl can gain some weight and have the stamina she needs just to eat! 

Kid Funnies

It's not all doom and gloom around here. We're happy people = ) For Mother's Day last week, I filled out a funny survey and one of the questions was "What is your favorite thing about motherhood?" I answered that my #1 favorite thing is the whole-hearted loving I get from my kids... but a close second would have to be hearing all the surprising, hilarious, insightful things they say. My two boys are 5 and 6 and they frequently have us laughing. We have a running Google Doc where we record the funny things they say, because who wants to forget that?? Here are some recent favorites. Enjoy. :)

On a family walk tonight, Jake pointed to a street sign that had a smiley face sticker on it. He hollered to Annie, “See Mom?! There’s one over here!”
Annie: “I see.”
Jake: “There’s one over here, Mom!”
Annie: “Yep.”
Jake: “Mom, there’s one over here!”
Annie: “Yep, I heard you… all three times.”
Jake, without missing a beat: “Third time’s the charm!” (Age 6)

I asked Jacob to clean up some toys in the living room. As he grudgingly walked over, he said, “I wish that cleaning up had never been invented!”

Lydia’s heart has a couple congenital defects, and so Jordan is so good to pray for her every day. The last couple days he has prayed: “Please bless baby Lydia that her heart will pump blood all over her body, but not on the outside.” (Age 5)

We are on a walk around the neighborhood, and Jordan stopped. I looked back, and he was bent over trying to fix his shoe. He said, “Dad, I’ve got a situation here.”

Jake: “Jordan, there’s a ghost on your head! Now it’s in front of you! Now it’s behind you! Now it’s on your head! Now...”
Jordan: “Jacob! Stop it! I’m afraid of ghosts! I don’t like ghost games!”
Jacob: “Jordan, it’s just the Holy Ghost.”

As Dan was walking out the door this morning to go to work, Jacob said, “Bye Dad! I hope you make a lot of money this time!”

Jacob: “Dad, did you already get married?”
Dan: “Yep.”
Jordan: “To Mom?”
Dan: “Yes.”
Jordan: “So we can keep her?” (Age 4)

Annie: “Jordan, do you need chapstick?”
Jordan: “No, my lips grew back.” (Age 4)

Jacob’s car seat straps were all twisted so Dan was helping him straighten them out.
Jordan: “You’re very good at straps, Dad! You’re... service you can count on!”

Annie: “What are the vowels?”
J&J: “A, e, I, o, u”
Annie: “and sometimes Y”
Jordan: “Mom, is today Y a vowel?”
Annie: “...Yes, today Y is a vowel.”

After Church, I was asking Jordan about class, but he gave minimal response. “Did your teachers tell any stories?”
Jordan: “Yeah.”
Me: “What was it about?”
Jordan: “About 4 or 5 minutes.”

Jacob: “Dad, why do we want BYU to win?”
Me: “Because we like BYU and Mommy and I went there for school.”
Jacob: “Together?”
Me: “Yep.”
Jacob: “And that's when you spotted Mom and decided to marry her?”
Me: “Yep.” (Age 5)

Jordan has been coughing all day, and felt warm so Dan took his temperature. After rubbing the temporal thermometer across his forehead a few times, he said, somewhat instructively, “It’s in my throat.” (Age 4)

Jake gave me a penny he found on the ground, “So we can be a little more richer than we have been.” (Age 5)

Today, Dan and I walked in on Jacob, who was surrounded by toys, singing his own little song:
Ascending:
"But I cannot clean up the big mess"
-key change & descending:
"All by myself." (age 5)

It’s not going away, and that’s ok.

For when you wish you could change things for them. 

This one is sensitive. I hesitate to write about it, except that I think it’s absolutely critical and something we all struggle with—myself included. I’m praying that we approach the following with love in our hearts, open minds, and some deep introspection & compassion for all those involved. These thoughts are coming from a personal conversation in which a suggestive and insensitive comment was made, and the subsequent ponderings I have had, lately.

Sometimes I think we all struggle with the concept of death as a solution to or at least relief from a “problem.” How many of us, for example, have watched someone we love care for another, be they elderly or sick or disabled or whatever, and when that person dies have thought, “Gosh that’s sad. But also kind of a relief. At least the caretaker can lead an unburdened, normal life, now.” I am ashamed to admit I have thought things like that! And now that I am in a position to potentially care for someone throughout their life, I see just how misguided and incomplete my perspective was. 

They say that when faced with loss you go through various stages including anger, denial, bargaining, depression, and acceptance. What I don’t think we realize is that we sometimes go through those stages even when the loss is not our own, but happens to someone we love.  

What I think we all mean when we look upon death as a relief is, “I wish that I could take this from you. I wish there was a way to change this thing that is so hard.” But there are some things that cannot be taken away. There are some things that are just hard, and some burdens that only God can lift. And I don’t think He does it by taking them away. My daughter’s death would not ease my burdens—it would add to them. Immensely. Death brings its own trauma and scars—especially a child’s death. Just because someone is gone, it doesn’t mean the pain is. Just because someone is here and needs to be taken care of, it doesn’t mean life has to be anything less wonderful than it might otherwise be.

We’re in it, now. I need to accept this, and I need you to accept it, too. In the spirit of “less helpful verses more helpful,” let’s approach this another way. Instead of wishing a different life for me, instead of looking for the challenge to be removed or changed, just help me carry it. 

There have been so many people who have done just that. My mother-in-law, for one. When I told her that Lydia would need open heart surgery (something that is difficult to face myself, let alone break to others) responded simply: “We’ll get through this.”   And instantly it was Team Lydie. Team “you’re not alone.” Team hope for a bright future. Then my own parents, when I’ve said things like, “I can’t believe this is my new reality,” have responded with, “You are not alone. We’re here to help”—and proved it.

Dan and I were musing about what will happen to Lydie when we’re gone and how we need to prepare for that, when without hesitation a sweet sister exclaimed, “I’ll take care of her!” As if this is her fight, as well.

Another sister and so many friends have called to say, “I’m bringing dinner!” We have had many friends who have texted or sent messages just to say, “I’m thinking of you. I’ve cried for you. I love you, and when you’re ready and you need me, I’m here to talk.” People who have connected us with support groups and friends. The woman I barely know who sat beside me at church, put her arm around me, and sincerely asked, “How is your new life?” 

I cry just thinking about it. All these people with open hearts and reaching hands. This is what real support, what sharing each other’s burdens, looks like. 

It’s not going away. And I don’t want it to go away. So please God, and those I love, help me gain the right perspective. Help me make it through the day. Help me face it head on and learn what I’m supposed to from this experience. Help me make the life I have been given absolutely beautiful. 

And for the gift of your love, we can never thank you enough. 

 ***

In my next post I’ll get specific about things you can DO that truly help.  

More interesting facts: 

The life expectancy for someone with Down syndrome is now 60 years. WAHOO!!! 

Helpful and... less so.

I’ve gotten a lot of really interesting questions lately. Of course, when something major happens in your life, every question seems to carry a lot of weight. (“How are you?” for instance, followed by significant looks.) But one of the questions I got that’s been on my mind lately, is, “What have people said that has not been helpful to you?” What an interesting question to be asked! We have been the recipients of so much service. All of it has been given in love. But this question highlights a pretty common problem: people want to help, they just don’t know what to do, and it’s awkward for them. So I thought I would write a blog or two on what has been really helpful, verses what has been... less so. Keep in mind that this is all written from my perspective, and since everyone is different some of these things may not apply to every individual. But I’ll try to focus on things that are likely broadly applicable. ;)

Not Helpful: Advice on childbearing. 

I am of the opinion that it is probably never a good idea to tell someone how many children they should have and when they should have them. After struggling to have our first and experiencing miscarriage later, I would even advise against asking when someone is planning to have a child at all. Because for all you know, there may be a lot of pain in that answer, and besides, is another family really anyone else’s business, anyway?  Also, I am the kind of person who, immediately after even a “good” pregnancy and birth, never ever ever wants to go through that experience, again! Hah! Asking a recently-delivered mother when she’s planning on the next one is a recipe for disaster in my opinion! Add to that that this was not a normal birth. It was a difficult pregnancy followed by a shocking birth diagnosis accompanied with severe health challenges. LIFE ALTERING. So, when a couple that I had never met before in my life approached me, said they knew about our “situation” and confidently certain that they understood advised, “Don’t let this stop you from having more kids! Our daughter had a child with such-and-such issue and she had more kids and has faced her challenges brilliantly and changed the world and...” it didn’t sit well with me. I mean, good for your daughter, truly, and kids are amazing and all, but I have literally just been handed the challenge of my life. I am not your daughter and our circumstances may not be the same. I am COMPLETELY overwhelmed. Like any new mom, I can barely find time to shower, let alone face open heart surgery/a lifetime of challenges, and in my spare time contemplate having another child and “getting it right” while using this child as a platform to change the world. Just let me love the kids that I have the best that I can and let that be enough, ok? Because trust me, it’s enough. Along the same lines someone else said, “But you’ll have more kids...” which kind of sounds like we need a “redo” because this one didn’t turn out. Guys. She turned out! She is just the way God meant her to be, and I’m not going to start her life by disregarding her and moving on to the next one. 

Helpful: Celebrate my daughter’s birth and welcome her with open arms.  

 I cannot express the gratitude and love I have felt for people who have celebrated my daughter’s birth. Who have thanked me for bringing her into the world, just the way she is. Who have expressed excitement over getting to know her and watching her grow. Who have committed to be there for her, always. Who have said she’s influenced them for the better. While I didn’t appreciate being told I needed to have more kids, I did appreciate that this couple viewed their grandchild with a disability as valuable—because every child is valuable!! And no child needs to achieve a certain academic level, receive a certain award or accomplish a specific task to prove it. They just ARE. No Mom has to write a book to make her disabled child’s life “worth it.” If she does, awesome! But that child was significant all along, and his/her mother was enough, too. 

So to conclude, people mean well and I don’t want them to feel like they have to tiptoe around what they say. But it’s not helpful to give an overwhelmed mother more to do or live up to. It is helpful to be there for her, where she is. Celebrate her baby. Tell her she’s doing a great job. Love her and her child unconditionally, and offer to help lift her burdens. What she needs most is just what she’s trying so hard to give: pure love. 

I got my girl. Just the way she’s supposed to be. 

Interesting Facts

Sometimes people make comments that illustrate they don’t know much about Down syndrome, which I understand because I didn’t know much about it aside from stereotypes before Lydia was born. So, just for information’s sake: 

We’ve been asked if it runs in our families. Down syndrome in 99 percent of cases is not an inherited condition. Nor does it occur because of something that the mother did or was exposed to during pregnancy. In the vast majority of cases (including ours), Down syndrome occurs BEFORE conception, when either the egg or sperm contains an extra chromosome, just because. Families of those with Down syndrome refer to this as “winning the lottery” =). The only known risk factor is increased maternal age at conception, but most people who have children with Down syndrome are younger than 35 because that’s the largest childbearing age group. Now you know! 

Cleaving

My brother-in-law got married, yesterday. It was a truly beautiful and happy day celebrating the couple and the beginning of a new family. The details of the wedding, ring ceremony, and dinner were exquisite. Gold plates, twinkle lights, mountain sunsets, flower petals. It was so well planned and the results were the stuff Pinterest dreams are made of. Sweeter still were the family and dear friends who traveled from all over to share the happiness of those they love.

I’m sure it is because of where I am in life at the moment, but during the marriage ceremony and official remarks/tributes made throughout the day, I heard several times from different sources counsel about weathering the rocky places and storms of life with your spouse. Again and again I heard the counsel to cleave to one another, serve each other, and love your way through. And I remembered so many things... 

We were babies ten years ago. So in love and so without a clue of what that meant or where it would take us.  Since our wedding day we’ve lived in four states, completed multiple college degrees, had three children. We’ve applied for jobs we’ve gotten and many we haven’t. We’ve kept each other company at parties, reunions, funerals, and in hospital waiting rooms. We’ve laughed, we’ve cried, we’ve argued, we’ve budgeted, we’ve vacationed, we’ve dreamed, and we’ve fallen in bed next to each other completely exhausted. We’ve lived a lot since our “first dance” ten years ago. We have so much living and learning left to do.

Last night I left the party early. It had been a long day, I had two rambunctious boys to put to bed, and a struggling newborn waiting at home who would need to be fed multiple times during the night. And I had a migraine that had reached “every spot of light is painful, I am literally praying I can drive home safely, all I want to do is throw up,” level. If that’s not stepping out of a fairy tale and getting back to real life, I don’t know what is.

With a healthy bit of grace and the aid of my parents who had watched our homebound baby girl so we could attend the wedding festivities, I got home and got the boys in bed before Dan walked in the door and ordered me to go to sleep. I obeyed. And although he was exhausted himself, he then took every single feeding during the night so that I could rest and get better. 

I don’t know if I’ve ever seen bags under someone’s eyes like there were under his, this morning. And I don’t know if I’ve ever loved anyone more.  

The scriptures say “Therefore shall a man leave his father and his mother, and shall cleave unto his wife: and they shall be one flesh” (Gen 2:24). You hear that as a new couple and you feel it in your heart, but as life goes by you become welded together in ways you never imagined. I don’t know how it works, but somehow exhaustion and pain and healing embrace become even more beautiful than flowers and glitz and special occasions. The mundane and sacred everyday somehow refines your relationship, purifies it, and makes it precious beyond price.

For about five sacred minutes this morning, we lay in bed lazy Sunday style and held each other. This is personal, but in that moment I felt my heart reach out to that man, bear hug itself around him and cling there. I feel the winds around us. I feel the stress and the tears and the hard. I feel fear and desperation. I feel the weight of all the challenges of this season—not just baby girl’s health, but the million other big life things we’re facing right now. And I feel him. My rock and friend and companion. The only one besides God who knows how I feel and what this is like.

 “Wherefore, lift up thy heart and rejoice, and cleave unto the covenants which thou hast made” (D&C 25:13). I’m so glad I promised myself to this man ten years ago. I’m so grateful he promised himself to me. We are not perfect and life is not perfect, but I will cleave to him always through the beautiful and hard. Because that’s what real love is, and  I’m so blessed to know it. 

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

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.

Snippet of Motherhood

My mind is fuzzy and my thoughts trail off in incomplete sentences.

Sometimes I put on make up.

Sometimes I forget to eat.

Bedtime is never and always.

Three little people to keep alive.

Not enough hours in the never ending day.

The same routine over and over and over.

With a baby smile, a fleeting sunbeam, a wild bear hug, and an, “I love you, Mom. You’re the prettiest Mom I ever seen,” to make it worth it.

This is life.

The Playlist in My Brain

Music is powerful. I'm sure everyone can relate to listening to a certain song that takes them back to a specific time in their lives. Sometimes, during the last two months, when I couldn't find words to express my feelings, they came as song lyrics; a perpetual playlist running through my head expressing my doubts and fears, my hopes and motivations. As any mom with a newborn, I don't have a lot of time (or energy, or consciousness... hah) for deep thinking. My playlist is only 17 min long, which I can squeeze in pretty perfectly on my "I gotta get out of the house" runs to Target/Walmart every other day or so. So here are four of the songs that have been on repeat in my car and in my heart lately, and what they mean to me. I've included links to all the music if you'd like to hear them, yourself.

***

This song comes from The Giver, which is one of my favorite movies. The movie celebrates living life with all its highs and lows. For those moments when responsibility weighs heavily on my shoulders, when everybody says "You're so strong" and I feel anything but, for when I need to remember that all the emotions and experiences are a gift, and for when I need to allow myself to be imperfect instead of a superhero, this is the song that plays.

Today I took a walk in the clouds
Today I took a walk in the clouds
Used to keep my eyes wide shut
But now I'm staring down

Today I felt a switch in my vein
Today I felt a switch in my vein
Used to be a shadow
Now a shadow scream my name
And in the daylight I could swear
We’re the same
I’m just an ordinary human
(Ordinary ways)
I’m just an ordinary human
But I don’t feel so ordinary today

"Ordinary Human" - OneRepublic

***

This one is my denial/how can we change the world song. For the moments when it doesn't seem fair. When I wonder how this happened and what we're going to do about it. For when I wish that things had gone another way, but it's out of my control. And then for when I resolve that no matter what the reality is, no matter what stereotypes are out there, we're going to embrace it, succeed, and prove them all wrong. 

What if we rewrite the stars?
Say you were made to be mine
Nothing could keep us apart
You'd be the one I was meant to find
It's up to you, and it's up to me
No one can say what we get to be
So why don't we rewrite the stars?
Maybe the world could be ours
Tonight

You think it's easy
You think I don't want to run to you
But there are mountains
And there are doors that we can't walk through
I know you're wondering why
Because we're able to be
Just you and me
Within these walls
But when we go outside
You're going to wake up and see that it was hopeless after all

No one can rewrite the stars
How can you say you'll be mine?
Everything keeps us apart
And I'm not the one you were meant to find
It's not up to you
It's not up to me
When everyone tells us what we can be
How can we rewrite the stars?
Say that the world can be ours
Tonight

All I want is to fly with you
All I want is to fall with you
So just give me all of you

It feels impossible (it's not impossible)
Is it impossible?

Say that it's possible

How do we rewrite the stars?
Say you were made to be mine?
Nothing can keep us apart
'Cause you are the one I was meant to find
It's up to you
And it's up to me
No one can say what we get to be
And why don't we rewrite the stars?
Changing the world to be ours

Rewrite the Stars - The Greatest Showman

***

This song. I first heard it just after my first son was born, and I bawled my eyes out. Because, motherhood. It's always been emotional, but now it's even more significant. It was written to honor a little boy who passed away from cancer--co-written by his mom. For when I'm tired of the hospitals, the doctors appointments, the tests, and the machines. For when I can't think anymore about upcoming surgeries or how much life is asking my baby to go through. When I just want pick her up, snap the cords, and run away. This is it.

I remember your bare feet down the hallway
I remember your little laugh
Race cars on the kitchen floor, plastic dinosaurs
I love you to the moon and back

I remember your blue eyes looking into mine
Like we had our own secret club
I remember you dancing before bed time
Then jumping on me, waking me up

I can still feel you hold my hand, little man
And even the moment I knew
You fought it hard like an army guy
Remember I leaned in and whispered to you

Come on baby with me, we're gonna fly away from here
You were my best four years

I remember the drive home
When the blind hope turned to crying and screaming "Why?"
Flowers pile up in the worst way, no one knows what to say
About a beautiful boy who died

And it's about to be Halloween
You could be anything you wanted if you were still here
I remember the last day when I kissed your face
And whispered in your ear

Come on baby with me, we're gonna fly away from here
Out of this curtained room in this hospital grey, we'll just disappear
Come on baby with me, we're gonna fly away from here
You were my best four years

What if I'm standing in your closet trying to talk to you?
What if I kept the hand-me-downs you won't grow into?
And what if I really thought some miracle would see us through?
What if the miracle was even getting one moment with you?

Come on baby with me, we're gonna fly away from here
Come on baby with me, we're gonna fly away from here
You were my best four years

I remember your bare feet down the hallway
I love you to the moon and back

"Ronan" - Taylor Swift

***

And finally, the last one. For when I acknowledge that yeah, it's hard, but it I wouldn't change a thing. Because you are beautiful. You are beautiful just the way you are and our life with you is going to be wonderful. And maybe it's not what I planned it would be, and maybe I'll feel like I could fall 1000 feet at any second, but I'd still choose you again and again and again, and while we're up here on this crazy tightrope we're going to hold on tight to each other and enjoy the view.

Some people long for a life that is simple and planned
Tied with a ribbon
Some people won't sail the sea 'cause they're safer on land
To follow what's written
But I'd follow you to the great unknown
Off to a world we call our own

Hand in my hand and we promised to never let go
We're walking the tightrope
High in the sky
We can see the whole world down below
We're walking the tightrope
Never sure, never know how far we could fall
But it's all an adventure
That comes with a breathtaking view
Walking the tightrope

With you, ooh, ooh, ooh, ooh
With you, ooh, ooh, ooh, ooh
With you

Mountains and valleys, and all that will come in between
Desert and ocean
You pulled me in and together we're lost in a dream
Always in motion
So I risk it all just to be with you
And I risk it all for this life we choose

Hand in my hand and you promised to never let go
We're walking the tightrope
High in the sky
We can see the whole world down below
We're walking the tightrope
Never sure, will you catch me if I should fall?
Well, it's all an adventure
That comes with a breathtaking view
Walking the tightrope

With you

Tightrope - The Greatest Showman

Level 2

Lydia spent about two weeks in the Level 2 NICU, and I spent as much time with her there as possible. NICU life is a unique experience, and you kind of have to approach it in the way that is right for you. That approach will be different for everyone. For me, I needed to be with my baby. After the surprise of her diagnosis, I quickly found out that if I just stayed in my own room, my mind would race through all the “what if” scenarios it could come up with. Fear of the future and despair would overcome me. But if I was with Lydia, I could focus on living in the moment, getting to know her, and developing our relationship—which was much more healthy and positive for me.

Dan had saved up a week of vacation for the baby’s birth so he could watch the other kids while I focused on the baby. As it turned out, he spent much of that week with me in the NICU, getting to know our daughter and familiarizing ourselves with her needs. We are incredibly fortunate to currently live close to both sets of our parents (after living out of state for the majority of our marriage), and the grandparents took over watching our boys while we spent time at the hospital. The opportunity to spend those critical first days together with Dan and Lydia was incredibly healing and strengthening, and will forever be one of the greatest gifts anyone could have given us at this time. 

I have always felt profoundly grateful for my labor and delivery nurses, but I tell you what, those NICU nurses who cared so well for us for those two weeks have a special place in my heart!! Because I spent so much time in the NICU, I got to know many of the nurses very well. They taught me how to care for Lydia in the NICU environment, they offered medical knowledge and advice, they provided me with educational books and resources and with baby supplies. They offered me friendship, comfort, and respect. They taught me how to stand up for myself and advocate for my daughter. They celebrated our victories with us and helped us come up with solutions to challenges. They bathed my daughter, put bows in her hair, created artistic signs for her bed, and carefully picked out her bedding and clothing. They watched over her day and night with love. I will always remember our nurse Amy saying in a moment of casual conversation with me, “Do these parents know how much we love their babies?!” Oh Amy, I know, and my mama heart is forever grateful!! My heart is so full when I think of those beautiful people who truly helped us during that crazy time. 

My boys had long awaited the new baby, and it was hard for them to not be able to see her immediately! Not to mention having Mom gone so much. They were such patient little troopers, and watching them meet and love on their new sister that first time was something special. I know they will be the best big brothers to her!

There were so many hard things about the NICU, but so many beautiful things, as well. As I look back, I feel tenderness for that time and place and those who shared it with us. It was such a sacred time of growing closer to Lydia, closer to each other as a couple and family, and closer to God.

Birth Story

Preface

Journal Entry for March 29, 2018

“I wonder if I opened up this journal and wrote ‘my heart hurts’ every day if it would eventually hurt any less?”

That is the first and only thing I have been able to write in my journal since Lydia’s birth, so far.  Because it’s hard. To relive the memories and the emotions and honestly write them down is hard. But now, now that she’s six weeks old, I’m caught between “I need to write it down… maybe I’m finally ready…” and “If I don’t write it down now, I’m going to forget.” So we are going to try.

But if it’s hard to write, I’m sure it will be hard to read, so if you’re feeling judgmental or weepy, maybe just don’t. Especially since it took an incredible amount of courage and vulnerability to write these things down. And for those who keep going, and maybe even Lydia herself who might read this one day, just know that this is a real life example of “opposition in all things,” “for if they never should have bitter they could not know the sweet.”

One week before delivery-day.

***

“Did you know? Did you have any idea?”

It’s the question that everyone asks. Friends, neighbors, nurses, technicians. Everyone wants to know: did we know? The short answer is, no. We did not. It wouldn’t have made much difference if we had—we would have still welcomed our girl with open arms—but maybe I would have been a little more prepared for our first meeting.

Of course, I was flagged at my 20 week ultrasound because her lungs “looked a little bright” and her femur was measuring small. The nurse told me not to google anything before going to Maternal Fetal Medicine for a more detailed ultrasound, but of course I did. Searches for bright lungs, the primary concern, revealed a lot of scary conditions that could require surgery after birth. And the short femur, well, that IS a marker for Down syndrome, which completely freaked me out. But her brother had measured exactly the same in utero (I actually looked up his ultrasound measurements and compared them) and he was completely fine. Still, I prayed (BEGGED), “Please, Heavenly Father, PLEASE let her body be fine. Please let there not be anything majorly wrong. And PLEASE bless her to not have Down syndrome.”

So we went to Maternal Fetal Medicine, where the specialist looked her over really well in the ultrasound. They examined everything---the brain, the fluid behind her neck, her heart, her femur. After a lengthy investigation, this is what they told us: “She’s fine. Her lungs look bright because of the settings on their machine and because you scan well. As for her size, I’m not even worried about it. COULD she have Down syndrome? Well, yes. But there is nothing here to indicate it. Everything looks fine. I would say you have the same odds as anyone in the population.”

Exact words.

We had a follow-up appointment with Maternal Fetal Medicine four weeks later, just to make sure things still looked good and to make sure the placenta looked ok (there had been some questions about how the umbilical cord was attached to it). A different specialist looked at the ultrasound. The placenta issue had resolved! Again, they looked at her heart, her fluid, her size, and everything else. This specialist also confidently said, “Looks good to me! She’s fine. Congratulations! You don’t need to come back.”

So at that point, I put my fears aside. I trusted that everything was ok with about 98% of my heart. The other 2% were reserved for her birth, when, I told myself, “I’ll finally FULLY relax when I can see in person that she’s perfect.”

I’m shaking. My whole body is shaking, especially my hands. That’s how hard it is to relive this. To get it out.

We went to the hospital about 9 pm on Friday night. Dan had spent a grueling day in job interviews up in Salt Lake, then had driven home in a snowstorm, picked up the kids from Grandma’s (she babysat them while I had a doctor’s appointment that afternoon), and we learned that one child was complaining horribly about an ear ache, so Dan ended up taking him to the instacare. Meanwhile, I was in labor, and trying to decide if my water had actually broken or not (it had).  So with kids home from the instacare, antibiotics administered, everyone finally put to bed, and Grandma called to come over, we headed to the hospital where they admitted me and labor began in earnest.

I was as prepared as I could be for labor, and it went smoothly. We walked around the hospital halls, looking at the beautiful pictures of newborns that lined the walls, wondering what our sweet baby girl would look like and what she would be like. In the room I bounced on a birthing ball and Dan applied counter pressure during my contractions. It wasn’t until I hit about an 8 that I said, “You know, this day has been long enough, let’s get the epidural.” It was my first successful epidural! The anesthesiologist was great, our nurse was sweet, and we laughed and talked our way through labor, anxiously and excitedly waiting for baby girl.

Before long, I was pushing and then she was here! The cord was wrapped tightly around her neck, and she was “stunned.” They took her over to the bassinet and worked on getting her to cry. None of my kids have been criers at first, so I wasn’t worried about it. Sure enough, before too long they were handing her to me.

The first thing I saw was a bright red face and a lot of blonde hair sticking straight up. Classic newborn attractiveness. I later realized that there is a picture of me as a newborn that looks exactly the same: swollen red face, blonde hair. Totally not my favorite picture, but also completely endearing now since my little girl looked exactly the same! But I didn’t think about that at the time, because I was busy looking closer. And that’s when I saw.

While the picture above doesn't fully portray what I saw, her face had all the markers of a child with Down syndrome—the shape of her eyes, especially. But wait! MFM had told me she was fine! And all of a sudden that 2% of doubt that I had filed away until I could see her in person came roaring back to the forefront and became my whole reality. I knew.  She did have Down syndrome. I was completely shocked and devastated.

But no one around me was saying anything. The nurses were all busy doing their thing, and nobody acted like anything completely earth-shattering and life-changing was going on. In a brief moment of privacy I turned to Dan. “She looks like she has Down syndrome to me,” I gasped. “That’s what I thought, too!” He said, equally surprised. More frantic glances at the nurses, the doctor--anybody. No response. Finally I turned to my labor nurse, who was a sweetheart, and feeling awkward and almost ashamed in that traumatic moment, tentatively asked, “So… she looks a little… different to me…” “Yes,” the nurse replied, “Someone from nursery will come up to look at her.”

And that was all.

But we knew.

***

The nurse did come up. By a tender mercy from heaven, she “happened” to be someone who knew Dan growing up. I took so many human and child development classes in college that I lost count of them all, and as the nurse pointed out the markers to me (she couldn’t offer an official diagnosis), I knew what they meant. Poor muscle tone, low-set ears, almond shaped eyes, extra skin at the back of the neck, flat bridge on the nose, single deep crease in the hand: She has Down syndrome.

I made a decision in that moment: I was not going to deny this. I was not going to hold out false hope for the results of the genetic test to come back. This was it. This was the proof. As unbelievable and shocking and hurtful as it was, this was real.

My daughter had Down syndrome.

To be honest, I don’t remember much after that. I remember Lydia nursing well, and how happy and relieved that made me (nursing is always my biggest stress). I don’t really remember leaving the delivery room or arriving in our recovery room. I don’t remember when they took her away to the NICU or why. I do remember them telling me the pediatrician would be by in the morning and that he would be able to “tell us more,” (did that mean give us some official diagnosis?). And I remember being left alone in my room with Dan. I’d never been left without my baby after giving birth, before. It felt so wrong. Everything was wrong. But it was real. And it was night, and we were supposed to be “getting some sleep.”

Thus began the longest night of my life.

I didn’t sleep. They turned off the lights, I laid down on the bed and closed my eyes, but I didn’t sleep. I prayed. All night long.

I don’t even remember what I prayed for. Strength, probably. Perspective? Hope? That, since she was in the NICU, she’d be ok? I think I just reached out to Heaven because more than any other time in my life, I needed Heaven to reach down to me. To be with me. To help me through this. Because if I knew anything I knew this: I couldn’t do this. This was for someone stronger. Someone without my weaknesses. This was not for me. My heart was broken, and I was terrified.

Hours and hours went by. I must have at least drifted into some kind of sleep because I had the sensation of waking up and realizing that it wasn’t just a dream. The nightmare was real. My heart was sick and bleeding. My baby was still gone and Dan and I were alone in the hospital room where a picture of a “normal” newborn hung on the wall looking down at me.

“That’s not my baby,” was all I could think.

***

That was probably the low point. In the morning, the pediatrician did come in. He confirmed that she “did have several markers of Down syndrome” (I guess no one wants to give the official diagnosis in a case like that without the genetic test results to back it up). I had already accepted this, but then that sweet man took me by surprise. Tears filled his eyes as he told us, shocked and grieving parents that we were, how special children with Down syndrome are. What a blessing they are to their families and to others. He cried with us and comforted us. In our moment of tragedy and trauma he offered both empathy and hope.

It melted me.

I will love that man forever.

The NICU nurse from the night before was back, as well. When the pediatrician was finished speaking, she added something through her own tears. “You need to grieve,” she said. “It may seem strange, because you just had a baby, but this is not the child you thought you were going to have, and you need to acknowledge those feelings and let yourselves grieve.” The permission to feel the hurt was a gift. Because you feel guilty crying over a precious new baby you’re supposed to be excited about. She was beautiful and strong, true, but completely different than what we were expecting. We were traumatized. We were scared. We were in shock. It was all so much to feel. And allowing ourselves to feel the hurt was the first step toward healing.

Happy Easter 2018!

Today is Easter and I’ve got to say, it’s an especially sweet one to me. We chose to name our daughter Lydia Faith before she was born; before we knew she had Down syndrome. Each of our kids has a church song with their name in it that we refer to as “their” song, just for fun. Lydia’s song goes with her middle name: Faith. One night when Lydia was in the NICU, I came home for a quick dinner & to say goodnight to the boys, and found that Dan had put the first line of Lydie’s song up on our letter board. It’s meant as a metaphor to teach children about believing in things you can’t see, but in that moment it was more than that. It was a rallying cry, and an expression of hope and trust in the Savior. For a bit after Lydia’s diagnosis, our world was dark and very painful. There are still moments like that. Fear of the future, concerns about her health, heartbreak over the challenges she faces... But this morning as I sat with my boys around me and Lydia on my lap and we talked about the beauty and significance of Christ’s Atonement and resurrection I just felt so thankful. This life has challenges, some of which are very hard, but this life is not all there is. Because of Him, the sun does rise. Because of Him, one day my daughter’s body will be whole; and until then we are given hope and grace and beautiful learning experiences to get us through. I’m so grateful for that. I know He lives and that through Him we can all live—perfect, whole, and healed in all ways, again. Happy Easter.

Thoughts on World Down Syndrome Day

I’ve always been awkward around people with special needs. Never knowing what to say or how to act. How to relate and not offend. Feeling like it was easier to just avoid interaction and keep us all comfortable. To love and respect at a distance. That was me.

And then I had a daughter with Down Syndrome and my world changed. Drastically. Pushing me way, way out of my norm and my comfort zone.

Over the last three and a half weeks I’ve had the opportunity to care intimately for someone with special needs. To make major decisions regarding her care. To be the resident expert on her. And yes, even to be her advocate. And you know what it’s like? Basically just being a mom to my new daughter.

Not to minimize her diagnosis. It’s also been a three week crash course in Down Syndrome; reading books, meeting with doctors and social workers, arranging tests, and planning for the future. It’s been emotional and eye-opening and life-changing. But one of those life-changing elements has been learning to see with new eyes. To look at my Down Syndrome baby and see… Lydia. Lydia the person, instead of her diagnosis. Lydia with her own personality as a unique member of our family and someone new to love. Just, Lydia.

I’m not an expert on this yet, but I hope that with practice I’ll become one. That some day *Lydia* is all I’ll see. Of course, she’s a newborn, so there is a lot that you just can’t tell, yet. But, while it does profoundly affect our lives, there’s more to her than Down Syndrome.

Who is Lydia?

First, she’s curious. While she still sleeps much of the day, when she is awake she is actively looking around, EVERYWHERE. That little head and those little eyes are going, going, going. Trying to take in the whole world around her. I love that.

Second, you should see this girl do tummy time. I remember subjecting my boys to this most miserable of newborn exercises, and they always gave it a few tries before collapsing in a face plant of infant tears. Yesterday I tentatively put Lydia on her stomach, expecting that with her low muscle tone she wouldn’t be able to do much and would quickly get frustrated. And it’s true, she struggled, but she didn’t give up. She didn’t collapse into tears. She fought. It was pretty remarkable to watch that little girl strain to lift her head, rest, then try again. She didn’t cry. She is fierce and persistent and determined. It amazed me and gave me a lot of hope. We’ll need exactly those attributes.

Finally, there’s a quiet, optimistic peace about this girl that I appreciate. She is gentle and positive by nature, and that is a gift. And she likes to cuddle, which this mama loves.

I’m so new at this. And awkward. And incredibly imperfect and humbled. But if there’s one hope that I have for my daughter and her future, it’s that people will make the effort to get to know her and love her and respect her for who she is: Lydia. And that they’ll allow and encourage her to be her fullest self.

Today I’m grateful for all those who have gone before. For researchers and doctors and interventionists. For parents and teachers and members of society and friends who have realized that people with disabilities are people, first.

And I’m grateful for Lydia. Who came to earth as her own person, and who already is a gift and a blessing and an expert at opening her mother’s eyes.

In the NICU

Our time in the NICU was hard and healing and overall sacred time. We were there long enough to watch several other babies come and go with their families and I admit, I was jealous. Jealous because they got to go home, and sad because I knew that while most of these other infants would outgrow whatever brought them to the NICU, we were different. You don’t just outgrow a major chromosomal abnormality or the complications that come with it. That was hard. But that time was also healing. Lydia was diagnosed at birth. After that shock I found that I could either sit in my room and panic about the future, or I could sit with my baby in the NICU, hold her, get to know her, pray, and think, “This is you. This is me. This is today. We can do today.” We’re still doing that.

Introduction

She’s been here two weeks. It’s impossible to describe the thousands of emotions I’ve felt every day since her arrival. There have been so many prayers, so many tears, and so many tender mercies. Everything is different, but the love we feel is stronger. God’s grace is more desperately sought and given. We count our blessings more, big and small. We are learning. It’s a process. We’re in it together.