Post Op First Look

 *** WARRIOR ***

The great irony is, she will spend most of her life trying to prove herself and gain respect, when in reality, she has already been through more than most of us ever will. ❤️

I have never felt more proud or more privileged to be a mom. 😭💗 #heartwarrior #theluckyfew #misslydiefaith #shouttheirworth *** Surgery went well. There are some big things we are still waiting to see as time unfolds here in the hospital, but she is doing great. Heaven has been near today. God is good. Man, we love this girl!!! THANK YOU for being there for us!

Pre-Op

Well, it’s been a crazy week over here. We’ve been running around doing all the last minute pre-op stuff and dodging curve balls, besides.  

On Tuesday, I took Lydie in to her pediatric cardiologist for our last visit before surgery. I really appreciate her cardiologist; he always answers all my questions in a way that I can understand, and he respects my opinions. Having said that, cardiology days are always hard because they are so dang long. Appointments can take up to four hours and inevitably everybody is hungry and tired by the end of it! I was ready this time with two bottles in reserve and I did NOT forget the binkie for the echo (unlike last time). True to form, though, we only got just over one ounce of food in baby girl before we had to leave. It’s like she knows when the pressure is on and will not be rushed. Dah! So I pretended like that wasn’t frustrating or going to haunt us later in the day (it DID) as we tried to make quota, and headed out the door. 

The appointment itself went really well and miracle of miracles we didn’t have to do another echo!! First time, ever I believe! So we got to leave early—wahoo!! But before that we did an EKG. This test involves placing  13 sticky sensor pads on her chest and then hooking them up to wires which just measure how fast her heart beats and how well it conducts electrical energy. It doesn’t hurt at all and putting the stickers/wires on takes way longer than the actual test, which only lasts about 60 seconds. Here’s my girl all suited up:

After that the doctor reviewed the results, listened to her really well, and answered my questions about surgery. Day one of pre-op stuff in the books! Back at home we continued the feeding battle and it did not go well. Some days are like that, but this one was on track to set a record. We had gotten 7 ounces in her by the time it was time to start her last feeding. We’re supposed to be getting a minimum of 15. She’s supposed to be gaining weight and staying healthy for surgery. I was in despair. So we prayed really hard and got in 3 more ounces which landed us at 10 (my bottom level intake limit) for the day because God is good. 🙏🏻

Then Wednesday came. I woke up not feeling so hot. I’d had a sore throat for like 6 weeks that we couldn’t pin down or get rid of and the doctor at the instacare had prescribed sleep 😂😂😂 Right. But Wednesday morning that sore throat showed up with a vengeance and took me down. Back at the instacare they told me I was running a fever and tested me for strep and mono (second test for that). And I panicked. Because my baby is scheduled for open heart surgery in FIVE days, she cannot get sick, and Mom is sick & contagious. NIGHTMARE!!!!!!

Dad to the rescue. Bless his heart. I called Dan and told him I needed him now and ps cancel all your plans and important work things because we are in EMERGENCY MODE. He did. He came and took over while I vacated the house and fled to my mom’s where for three horribly long and stressful days all I did was eat and sleep and panic over not being there for my daughter.

It.  was. agonizing. 

After a lot of prayer, a priesthood blessing, a lot of forced sleep and all the healthy food I could find... I was able to come home to my girl on Saturday feeling like a human again. 🙏🏻😭🙏🏻  

While I was out, Dan got NO sleep, went to zero days at work, and took Lydie to her pre-op hospital labs/x-ray/meet the surgeon meeting. 

Here’s a picture of our warrior after she had her blood drawn—which is no small task on such a small person with blood as thick as mud. 

It was rough for all involved. And for Mom who was purposefully uninvolved. 💔💔💔

So here we are. It’s Saturday night. I am home and although I feel good I’m keeping my distance & wearing a face mask. Dan is doing the Lydie stuff and I went grocery shopping. But we are all here, alive, healthy 🤞🏻, and together.

I don’t know, guys. Is this happening? Are we going to make it?!!! Please say yes, because I can’t go through this circus multiple times!

On Prayer

I am sitting here next to my girl, thinking about all the love that we have felt from so many, today. Her surgery is scheduled for one week from tomorrow. It has been THE big event looming on the horizon for the whole five and a half months she has been with us. I can't believe it's actually almost here.

I could not have anticipated six months ago what was coming down the pike for us--what this girl would bring and how knowing her would change our lives. I think that anytime you have a child you know your life will be forever different, but man--I feel like a completely different person than I was six months ago.

Lydia's birth diagnosis of Down syndrome was a surprise. Six days later, the results of her echocardiogram came back and we learned that she had four congenital heart defects. It was a lot of life-changing information to swallow in one week! (I'm still swallowing...) Introducing us to an entirely new medical world is not the only way knowing Lydia has changed us, however. It goes a lot deeper than that; beyond a diagnosis, a procedure, a label. My eyes are changed. My perspective has changed. My heart is changing. I am not the same. None of us whose hearts have been touched by her are.

But change can be hard. I have actually wondered why they didn't treat me for shock at the hospital, haha. Surely I qualified! Wasn't someone supposed to elevate my feet and put a foil blanket around my shoulders?? 😂 Maybe they were watching for signs all along and I just didn't know it. The point is, you don't have an experience like that and just get through it. It takes a million mighty miracles every moment of every day to even begin to cope. You cannot do it alone. Enter, prayer.

I have never felt the power of prayer like I have the last five months. People will often say to us, "You are in our thoughts and prayers, of course, but what can we DO?" As if prayer were a minor detail tacked onto our lives but inadequate to express our real desires to love and serve; maybe even sometimes considered such a little thing, or the easy way out. I am here to tell you--to shout it from the rooftops and shake you by the shoulders if I have to--that your prayers are the single most important thing you could ever give us.  You could send me on a cruise and I would shout from the balcony as we sailed away, "Thank you! But please, please pray for Lydie!!"

The meals are wonderful. The notes fill our hearts and bring tears to our eyes. Each act of service is a needed miracle in its own right. But the prayers--the prayers carry us.

I have felt the Lord lifting me in numerous ways the last few months. I know my weaknesses. I know my own capabilities. I KNOW that I could not do what I have been asked to do without divine aid making up the difference. There are lifelong physical and emotional challenges that have caused many problems before under times of much less stress that have, in this hour of great need, been held at bay. And I know it is not just a case of adrenaline or digging down deep and gutting it out for my daughter. As just one example: if you know me, you know that I have severe migraines. Two of my biggest triggers are stress and lack of sleep. In earlier times these migraines have required extensive tests and doctor visits and medications. But here I am, running on the least amount of sleep I have ever had in my life, under the most stress I have ever experienced, for the longest duration of time, and the migraines are almost a non-issue. That is a miracle. And that is just one example of the miraculous sustaining power we have received as a direct result, I believe, of so many loving prayers and God's merciful love.

You can never know all the challenges and dark moments and struggles anyone faces, or the ones that we have faced in recent months. Some of these issues (Dan finding a job, for one) have been big big things that just happened to occur at the same time we are trying to help Lydia. Some of them have been dark and desperate personal moments to fight through. And then there are the thousand and one very real and present physical challenges Lydia has faced, herself. But while you may never know all the exact, minute details, please know this: your prayers in our behalf and hers have been heard and answered a hundred thousand times. God is with us all day long when we let Him in.

Please know that your prayers, as your acts of service, are not casual. We feel them, sometimes literally. We know that God hears them because we have witnessed Him answering them. I believe in the power of prayer more now than ever before in my life. We are so grateful for the many friends who have shared so very much with us--especially their heartfelt prayers, and for a loving Heavenly Father who hears our cries (whether public or personal) and runs to our aid.

Thank you. I don’t think we could do anything to deserve such love. Although it is humbling to ask, please keep praying. And know that we pray for you, too.

Letter

Dear Son,

Do you remember the night we all got out of the house and ran to the park to play for 5 minutes before it rained? Maybe it wasn’t a big deal to you—just one of a hundred times you’ve climbed any number of trees this summer—but it was a big deal to me. It was a big deal because I was there. Someday I hope you’ll understand why this summer was so different; why your grandmas took turns taking you to their houses every day while Mom stayed home with your sister. Why I missed the first time you rode your bike without training wheels and the Fourth of July program you were in with your cousins. Why I couldn’t join you on your hikes or your picnics or your trips to the splash pad. I hope you know how much I’ve missed you. And that even though I have seemed like a grumpy, exhausted, mostly absent mom, I have loved the texts about funny things you’ve said, and the videos I have received of all your adventures. I hope you know that every day when you walked out the door hollering, “Bye, Mom! Hope you have a fun time, Mom! Miss you a lot, Mom!” my heart went with you, and that every time you gave me a kiss and a hug before bed I savored it more than I can ever say. I hope you know that this summer apart has highlighted just how precious these fleeting days with you are, and how much I long and plan to be there for every future one of them we have left.

Love, Mom

Keepin’ On

Popping in with an old favorite because it fits my mood these days. 🤣 We’re just hangin’ out, hangin’ on, waiting for surgery. Baby girl has had more good days than bad the last week (KNOCK ON ALL THE WOOD) and she is up to 12 lbs which I really never thought would happen before surgery so wahoo! Prayers! While there have been a couple scary moments/long nights, she’s come through them. Her little personality comes out more and more each day. I wish you all could see her grins in person because they are the best and light up our souls. The boys are a little afraid of this surgery thing coming up. We’re doing our best to keep it positive and not dwell on the scary stuff. Dan is continuing to hold down the sanity fort while my hair is literally still falling out... but maybe a little bit less? Haha. Speaking of hair, I got mine done for the first time in 18 mo because #selfcare. Also, online shopping. Saving grace or terrible addiction? 🤔 Trying, trying, trying to balance all the things and maintain a good perspective. Been into audiobooks during the endless feedings and have really enjoyed The Gratitude Diaries, Live Happy, and the sermons of Jeffrey R Holland online. Recommend them all. So, we’re hanging in there! Keep on keepin’ on. 💪🏻 Thank you for the love and prayers. 

My Girl

Isn’t she beautiful?!! I know that to some, this might just be someone else’s baby; but that’s a piece of my heart looking back at me right there. And she is special.

They called to schedule her surgery, today. And I said “Yes.” Yes, we will sign up for this. Yes, you can have that date during the second week of August. Yes, that’s when I will hand her over, you can take her behind closed doors, and I will pray the most earnest prayers I’ve ever prayed in my life. Motherhood seems a little too real and a little too heavy, today. A little too much like it’s hard to breathe. Still, I know I don’t carry the burden alone. There are many who love us, and I become increasingly aware of what it means to hand my whole heart over to God and trust that He can and will do what is best for His children (and mine). It’s just so hard to let go. 

Crazy July

I am a messy work in progress.

And so is my life... which this week included a trip to the ER, a trip to the cardiologist, family pictures, a baby blessing, and the go-ahead to get this dang surgery scheduled (date TBD). Also, I heard it was the Fourth of July? It’s cool. I’m fine. I’m fine! 🤪🤷🏼‍♀️😂😵 #wewillsurvive #butwillwe? #Imlosingallmyhair

Lydie Update:

She is now 4.5 mo old and weighs 11 lb 11 oz. She eats like a bird (a very slow bird) but thanks to the high calorie meals we keep gaining ounces one by one! We BARELY escaped a feeding tube again this week. If you’re wondering why we’re fighting that so hard, it’s because children can become dependent on feeding tubes and develop oral aversion—they can either disassociate hunger and swallowing or may not want to eat orally after being fed by tube. And, since muscle development is slow in kids with DS anyway, we are doing EVERYTHING we can to keep those oral skills in place, which will help with eating/speech later on! So the 90 min meals continue 💪🏻 Another new development is that she is reaching for everything which is so fun!

She also works on her (assisted) sit ups and core strength daily (see stories) so this girl’s on quite the regimen! The last 2 pics are from our cardiology appointment on Monday. She got blood work and her pre-op echo done, and we are just waiting on the hospital now to schedule surgery. Half exciting, half terrifying, 100% surreal. Just soaking her up and trying not to think about it too much. ❤️ 

As a Child

She can’t eat or breathe very well and yesterday she got some vaccines so she’s running a fever, but she’s been grinning and laughing at me all day. Oh what are all the lessons you have to teach me, Baby Girl?! Life sure is beautiful with you.

Update

 Through the pack n play. *** We’re doing okay over here. We narrowly escaped getting a feeding tube last week. We see the pediatrician again on Monday, so here’s hoping we make weight, again! She’s been eating pretty well, so I am optimistic. Every day is another day older/bigger before surgery. Also, she was full on laughing at Daddy, today, and we all died. Love this girl.

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.