This Journey Isn't Just For Us

I haven't posted since Christmas. Not for any particular reason other than we're living life.

We're chasing a three year old and cleaning up those little piddles from playing instead of pottying.

We're schooling our five year old.

We're soaking up our 9 month old.

We're loving and living this life He has blessed us with. Enjoying every moment, good and hard, as we approach her next set of procedures {heart cath on March 4th to check pressures in heart and lungs} and surgeries {open heart, bypass surgery in May}. 

We simply haven't been writing because we've been living.

But today, I write. Not for myself or our family. If you'd like a current update, check out Our Chloe Elizabeth on facebook. 

But today I write for a friend. You see, this amazing, tall, curly haired woman blessed us in so many ways, simply by meeting her when we attended church in KC while in the NICU. She took us under her wing, cleaned our Ronald McDonald room, washed our clothes, sat by with us during surgeries, and played with our littles. She left a wedding the minute I called to say Chloe had coded and we needed someone to watch our other littles. She served us in many ways. God blessed us with this stranger who has become family to us.

And now, let's help her family. 

They were in the process of adopting. Due in two weeks. Nursery ready, car seat in van, bags packed. 

But it all fell apart. 

And yet, in the midst of the hurt and loss, the grieving over preparing their hearts for this child, they've been approached about another possible baby to adopt, and quickly. 

So the reason behind this post today, after more than a month of not posting, is to ask for PRAYER, GUIDANCE, and FINANCES to come through for this family, whose heart longed to snuggle another precious gift, willing to put their own money into this other birthmom and child, only to be left empty-handed. 

Chloe's journey has brought us many places, and taught us so much, and continues to teach us. Today it's teaching us to be there for someone who's been there so much for us. This family has blessed us in many, many ways. Let's help bless them back. 

So we ask, please, if you feel so led, please follow the link below to her blog and consider giving in prayer or financial support to help them adopt this baby, if it be the Lord's will, that within the month, they can hold this precious bundle in their waiting arms. 

To read their story and why they're gently asking for support:

http://findingmercy.blogspot.com/2015/02/where-we-humble-ourselves-and-ask-for.html

To give to this adoption:

http://www.villagetovillageintl.com/the-behrens-family-family-33.php

Let's help bless their socks off like they did for Chloe <3

One Year Later: MERRY CHRISTMAS!!!

It's surreal to write this. I'm sitting by our unlit tree {lights burnt out probably thanks to running them constantly even during night shifts!}, on Christmas Eve morning, listening to the gentle hum of the water in the vent humidifier, the pressure of the tubes, the quiet sleeping baby {and her sleeping daddy in the rocking chair}. Our other two littles are asleep. It's serene. It's peaceful. {Editor's Note: by the time this post got published, two other little elves were awake and running the house. So much for peaceful.}

One year ago this week, our lives were so, so much different. Because one year ago this week we had our 19 week ultrasound, where it all began. One year ago this past Monday, I woke up from dreams of pink and black, rushed hurriedly to our sonogram because the unexpected snow had delayed our sitters, and anxiously anticipated seeing our sweet baby. But then it all began...and we spent the rest of our Christmas week in tears. With headaches. Putting on a smile for our little children. Pretending not to be scared. Praying endlessly. Being comforted by my family who was in. Letting the kids open whatever present they wanted as a distraction to us. Trying desperately to get through the holidays. With the exception of a few close family and friends, we kept the news to ourselves so as to not ruin anyone else's holidays. It was hard. Painful in fact. We had been told that Monday that we could lose her anytime, even including that week of Christmas.

But one year later, here we are. God is good. I'm not saying this week was easy because now we're home and she's here with us. This week had some very hard and poignant moments. Our facebook is flooded with friends who are expecting and posting their gender reveals by their Christmas trees. We rejoice for them, but there's that bittersweet moment where we remember back to our Christmas sonogram, and the idea we had to go out after it, buy a blue or pink stocking to surprise the kids on Christmas morning...and some tears came. Bittersweet is truly the word. But we can choose to live in the past and the hard reality that was last Christmas, or we can rejoice.

We choose to rejoice.

We rejoice not because He answered our prayers the way we wanted, because He didn't always do that, but we rejoice because His will meant that she is here with us this very Christmas week, one year later. We rejoice because He gave us the strength to endure days that we never knew could even exist in our lives. We rejoice because He provided for every single need that we had this year. We rejoice because of His loving kindness to our family and carrying us through this last year. Scripture says, "Fear not, for I have redeemed you; I have called you by name, you are Mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the Lord your God, the Holy One of Israel, your Savior." {Isaiah 43:2-3}.

And the Lord was true to His Word.

I took the morning shift dark and early the other day. I was worried because our night nurse said Chloe was coughing more, but otherwise was doing good. I knew we'd have some labs done locally that day, and began to pray for her health that we'd still be able to do them. I began reading by her bedside this beautifully illustrated and delicately formed book that John Piper wrote based on Job that a friend had blessed me with while in the NICU, and in it this week I found these words:

"Sometimes the spark of faith is slight
And does not make the darkness bright.
But keep it lit and you will find:
Far better this than being blind.
One little flame when all is night,
Proves there is such a thing as Light.
Remember now the place and price
Where Jesus promised paradise.
One answered prayer when all is gone,
Will give you hope to wait for dawn...

Beware,...God is kind,
In ways that do not fit your mind...

It won't be long before the rod
Becomes the tender kiss of God."

I believe these words sum up best our experiences this year. God does not promise easy. But He does promise that He will turn your darkness into joy and that He will wipe away every tear.

This Christmas, same as my post last Christmas when we stood still, frozen in time as the world raced around us, as we waited holding our breath and releasing our tears, we STILL say we rejoice, for Christ is born! He has come to save a world of sickness and darkness and pain and suffering, and to restore us to joy. O tidings of comfort and joy!

The only picture that I do not have that I would have loved to be in this is the image of our family, standing by our front door, with Chloe wrapped in blankets in my arms but off of her vent and all wires as we listened, smiled, rejoiced, and sang with our dear friends who came caroling to our door. I do not have that picture because we didn't take one. We simply soaked that moment into our hearts. But in that moment, with Chloe home, in our arms, our friends gathered around us, and singing praises to the newborn King, that was the best gift of all. 

And perhaps second to that moment, the best gift was that we were able to take all three of our kiddos together in one vehicle with just us, Mama and Daddy, and go to church to decorate for Christmas eve service. It's our family tradition, started when our little family of just myself and my hubs first moved here nearly seven years ago. The tradition of decorating has grown to include our children helping. I remember the year that our son was learning how to climb stairs, and we worried he'd fall while we weren't paying attention since we were busy putting up bows and candles. I remember the year our daughter crawled and toddled around an in between all of the chairs and searching for little berries or bits of styrofoam to put in her mouth.And this year, we have memories of sweet Chloe, chillin' in her carseat, smiling at her siblings as we decorated around her, and then listening to her daddy sing Christmas carols from the piano. This, I might add, was Chloe's first trip out of the house that did not include doctors or hospitals or labs. Her very first trip out was to decorate in anticipation of Christmas. Last year we stepped through the mounting snow with trembling feet, my hand gripping my husband's for support as we walked into our church immediately following our ultrasound to seek prayer from our pastor and friend. This year, we chased our other two littles in, followed by Chloe's big ride, and danced and sang and decorated and rejoiced as a family of five, 

one year ago to the day that it all began.

As our Christmas gift to you, here's a video of our journey. We thank EACH & EVERY one of you who loved on us, prayed for us, walked with is on this road and as we continue the path ahead. I apologize that the video is long {over 12 minutes!!}, but we wanted to make sure and capture her whole story thus far, from announcement, through diagnosis, birth, trach, heart surgery, and finally, HOME in our arms. 

Chloe is Home for the Holidays!

Chloe is home for the holidays!!!! Means the WORLD to us that she's here, safely in her own little homespital. So much to rejoice over.

And that's just what we're doing.

A sweet friend chatted with my hubs last week about surprising me for coffee with some friends. Somehow, by her creative genius, she ended up snowballing it into an all out amazing pamper me+pamper Chloe baby shower!!! I couldn't be more blessed and had such an amazing time.

I can't lie though. I tossed and turned the night before. My friends are amazing and bless me in SO many ways...but we're all in the same season of life, which is having babies and raising young families. I was struggling the night before with anxiety of wondering how my emotions would be the next day, as I sat next to friends who've had babies since Chloe was born, who found out they were expecting about the time we had Chloe, and now have brand-new-fresh-from-the-oven babes in their arms. I prayed for strength and for joy. That I would be strong enough to actually go, knowing that my friends care so deeply for me that this is their love for me flowing out. For joy to hold their babies and talk about teething and diapers without tears or envy. And I knew that if I needed to, I could be honest with every soul in that room about the struggles I was having with this, emotionally speaking, and that they wouldn't judge, but instead would wrap their arms around me and pray with me for strength. The peace I had knowing this gave me the strength to go.

And the Lord provided both joy and strength.

I was late to my own party. Not because I overslept, and I can't even use the excuse that I was helping with the kids or something. My hubs was sweet enough to take care of them so I'd have time to get ready. I was late because this was the first, the FIRST time out since...well...this summer???...that I was going out without children, and to a place that was not a pharmacy, a hospital, an urgent care waiting room, a grocery run, or a quick grab of coffee. I was hanging with my friends. I can't remember the last time this happened. So I was excited, but also trying to figure out what to wear. I haven't been to a shower in ages...and it's a Christmasy shower...so to dress cute, like holiday wear?? Not that I have any. To dress casual?? The thought crossed my mind that since we're all moms, I should have clarified that we all dress in yoga pants and sweatshirts to feel more at ease. That if they wore the same outfit from the previous day they'd get a door prize. I tried on 2 scarves. I stood for 20...TWENTY...minutes fixing my scarf. Why? I don't know. I was just wanting to actually look nice for once. It was fun to think I'd have a morning where I didn't have to help give a Lovenox injection, to get to put amazing scented lotions on my hands instead of non-latex exam gloves, to get to actually do my hair instead of whip it into a pony and run down to help suction. That I could wear jeans-cute jeans that I'm working my bum off literally to fit back into-instead of sweats.

I was so excited that when I went to leave, I kept asking Alan where the keys were. And he shot me a dumbfounded look back and said, "In the car. That's warming up for you. Right outside the door. Can't you hear it running??"

I ran out the door. Hopped in the van. Checked my lipgloss. Checked for stray children behind the van in the rearview mirror. Then proceeded to back into the trashcan at the end of our driveway. And if that's not enough, I actually backed it INTO the road. Then I quickly took off my gloves and texted my hubs, "So can you come get the trashcan?"

It should be noted here that I think nearly all of us wore scarves that day. We were a trendy little bunch. But seriously, mine was too hot and I kept fidgeting with it. Don't lie, friends, be honest-did y'all take yours off the minute you got back in your cars too?

This is what I walked in to...

Incase you haven't caught up, my friends and I are a bit obsessed with chalkboards. 

The minute I got over my envy of her baby grand piano by the entryway, I was confronted with these letters. J O Y. What my prayer has been through this entire journey. And I knew today would be filled with it. Every single one of us in that room has a story. We've all had chapters where we've had to pray for JOY, because joy is the only way to smile through a storm. It's not with happiness. Happiness and sorrow or struggle cannot mix, but joy and struggle can. 

And today, they all chose to set aside their crazy insane schedules, and love on me and Chloe. 

And the tears formed.

I was actually, in a wild turn of craziness in the universe, not late. So I grabbed some pics of the set up my friend did, while she checked her baked awesomeness in the oven. 

This gal knows my heart, so there was coffee. And creamer. And toasted marshmallow syrup. And for when that was done, home made apple cider like I've never tasted before. 

I asked her how to work her creamer thingy. "Just make it moo!" is all she said. Love it. Love her. Love the decor. And I felt like I was breathing in new, fresh air for the first time in months.

My heart. needed. THIS.

I snuck this shot because I love that she kept the hospitality real: she didn't fuss over every single cluttered detail, but focused on the heart of it all. I love that her counters weren't tidy and shiny, but loved and layered with heartfelt hand me down recipes, crafts, notes, pens, and phones. She knew where to draw the line on be a host, and be a friend, and she took the time to hug me and welcome me instead of rush back to the kitchen to check on things or tidy up the rest. I love that about her. #learningfrommyfriends

My friends poured in. We talked. We hugged. We laughed. It felt surreal. I can't lie...I kept my phone right beside me half expecting Alan or the nurse to call. I nearly fell off the couch when my friend swiftly grabbed her four month old out of her carrier to show me how much hair she had, then I had to apologize for overreacting at the move because, well, moving Chloe requires slow, precise judgement and placement of tubes and cords. It's been so long since I've seen a baby be moved around on a whim, without talking through where her suction machine will go...love that we were able to laugh that moment off though.

My friend hosting the party asked each person to write an example or way that I define strength and beauty because those are two traits that came to mind when she thinks of me. Please know, I do not say this to boast because there are far more days that outweigh the good where I actually feel strong and like my life is beautiful...but today, this was just the reminder I needed. I felt as if the Lord was speaking through my friends telling me yes, you are loved, you are worthy, this path is for a reason, I am using you and your family through this to teach others. It was a much needed reminder. I can't even begin to sum up the heartfelt words that were spoken amongst us. The tears that slowly crept out of our eyes and eventually to a waterfall of hot tears on my cheeks and other's. I cannot thank each individual in that room enough for making me feel loved. I can't begin to say what these words mean to me and that I will cherish through this journey, just so long as my kids don't find the cards and write on them before I have a chance to put them up!

It was amazing. Each of us have beautiful lives filled with family and kids and schedules, and yet, we were there, gathered in His name, together. Fellowship. Unity. Loved. The fact that we all made a point to be there, to be present in each other's lives, meant the world to me. My soul aches when others complain about how busy life is, especially when they lead perfectly normal lives. If you want it to slow down, you have to be the one to make that decision and to make that a priority. My friends did that for me to show me how much they care, and I'm speechless as to how to thank each of them for changing their schedules and gathering together on a Wednesday morning. {Side note: Please know that I completely understand for those who could not be there ;). I was in shock that this many were able to come!! Please know that I still think you're all awesome and amazing ;)}

After tears, there was laughter. And food. Amazing, home made goodness.

There were gifts for Chloe and for me. One of which my sweet three year old found later that day, and we only realized she'd lathered herself in my new Christmas scented Bath and Body Works lotion because the scent was so good that my hubs and I each looked at each other wondering where that smell of Christmas was coming from, only to then find our daughter's hands LATHERED in it. Couldn't help but laugh.

Two friends got the exact same gift from the exact same store and wrapped it in the exact same gift bag. Just sayin.

And for the record, the baby in the pic below belongs to its mama in the pic above on the left ;). We fun to see the babies be passed around the friends and let the mama's be hands free, if only for a few minutes. 

That last picture, with me in the middle (holding a fresh bag of Starbucks coffee)...well my friend on the right just gave birth about 2 weeks ago. Seriously. I could hurt her for looking this AMAZING just TWO weeks after an epidural!! How in the world does a new mama do that!? She swears it's just amazing concealer. I've had three kids. I don't buy it.

P.S. That's me, holding her sweet born-during-a-full-moon baby before she was even twelve hours old. Another day that the Lord provided the joy and strength to visit her in the hospital where I would have had Chloe, had it been a normal birth. But I was overjoyed to meet Miss Alex, and wouldn't trade that moment or those emotions for the world.

But back on subject...

Although I'm not a fan of this pic because my eyes were practically swimming out of my head, floating away with the tears from just a few minutes prior, and I have no idea what possessed me to attempt a Princess Diana pose with my head, but yet there's such beauty in this pic. I'm so grateful to this lady. She not only sung my kids to sleep for an entire YEAR (in her defense, she helped record a song at church that the kids loved so much, they'd beg for it on repeat at bedtime), but took the time to love on me and Chloe and thus our family. What you can't see is that approximately 3cm below the cutoff of this pic is a precious growing belly holding a treasure inside. Again, blessed to be filled with nothing but absolute joy for her and her growing family. 

I can't sum up what that morning meant to me. I can't put into words what it means when we willingly face life and accept the roads we're on and ask the Lord for joy to walk those roads instead of sit on the bench and ask why. I can't explain the amount of love in that room. I can't describe or put into words, into black and white letters on this page what it felt like to be surrounded by such strong, amazing women, such amazing mamas. My heart and soul needed this. My eyes needed to take this moment in. My ears needed to hear the reminders that even though my days consist of me at home helping the nurse and barely able to schedule any time out of the house, that they're still here for me. For our family. For our littles. For Chloe. 

They haven't moved. They haven't left. They're walking this road with me. With us. They're helping by His grace to breathe life into our weary souls. 

And for that, we give thanks, and begin the holiday season. 

It's Beginning To Look A Lot Like The Holidays

It's beginning to look a lot like the holidays. 

Thanksgiving is two weeks away. Less than that actually. Christmas is just weeks away.

And with Christmas comes the one year mark of when we learned of our sweet baby and the journey we'd be embarking on...

The holidays can be hard. Especially for those who have lost loved ones or been through trials this year. For those suffering financially or healthwise. There are many reasons why it can be hard. Last year, I slept on the couch all Christmas week because I couldn't sleep. Oxymoron? I slept there because I couldn't sleep. We were overwhelmed with the news following our sonogram on the 23rd. I was literally in fear that entire Christmas that I was going to miscarry. We were in shock. I remember sitting on the couch on Christmas morning fighting back tears, as our then four and two year old ran down the stairs wide-eyed, ready to open gifts and celebrate. I wiped hot tears off my cheeks as I took pictures of them opening gifts. We tried desperately to make that day joyful for them.

She wasn't supposed to survive that week...or the next...or the one after that. We spent each day from December 23rd on in a state of confusion, fear, anxiety...at least on the days we stopped trusting our Lord... We were reminded that this was exactly why He came down to earth for us...

But this year...SHE'S HOME. SHE'S HERE. SHE'S WITH US.

We got through last Christmas because of the Truth that Christmas is. It's about a babe being born into a world of sin and disease. A world of hurt and suffering. Of a young woman trusting in her Lord that He would see her through this miracle and bring this precious, perfect gift into the world, to be of the world, and to die for the world.

We're choosing to CELEBRATE this year as the holidays come around. We're soaking them up. We're blaring Christmas music. We're watching Christmas movies already. We decorate the tree tomorrow. I normally beg to leave it up until January 6th, Ephiphany. The day that is celebrated when the wise men would have made it to the baby. {And for any who love true facts, this is the TRUE 12 days of Christmas. It comes after Christmas, not before!}. But last year, I think I took it down on Christmas night.

But this year, it's up early. We're soaking up family time. We're celebrating Thanksgiving by giving thanks DAILY to Jesus for all He's done and continues to do for our little family, especially our little girl.

Christmas 2013

Tidings of comfort and joy. Those were the words I put on our chalkboard outside last year when I decorated, before we knew of the coming ultrasound. Those words, though washed out from snow and rain, stayed on that chalkboard till a sweet friend changed them this fall. Little did I know what those words, what that simple popular phrase, well, lyric from a well known Christmas tune (God Rest Ye Merry Gentlemen), would mean to us this year...

comfort... a state of physical ease and freedom from pain or constraint, or the easing or alleviation of a person's feelings of grief or distress.

joy... a feeling of great pleasure and happiness, or to rejoice.

Christ came to meet us in our distress, in our pain, in our weakness, in our grief, in our loneliness, in our diseased world...to bring us joy, by living to die for us. 

As the holidays approach, as the stores stay open later, as the menus get planned, as the shopping gets done, don't overlook Christmas. Don't overlook why He came. Worship Him this season. Even after all we've been through, He still deserves our praise and worship and awe this season. 

Chrismas 2014

Rejoicing Again

Today I held a precious new gift. It had thick, black hair. It made squeaks and it wiggled in my hands, beneath the depths of its warm swaddle.

My sweet, dear friend was blessed to introduce her new baby girl into the world in the early morning hours, during the full moon. I was beyond excited for them and was able to go visit them in the hospital and meet this stunning new creation.

I held her in my arms. I realized that I asked her daddy to put her in my left arm, simply out of habit. You see, when I hold Chloe, this makes my right hand free to help suction, to adjust the vent tubing, to move cords more easily. I didn't think about the fact, as he gently passed his new bundle of soft pink to me, that it didn't matter how I was holding her because this time there weren't tubes in the way.

I've only held two babies since having Chloe. I've guarded myself. I've put up walls that haven't been ready to come down.

But slowly, the Lord is removing the bricks I've so intricately built up around my heart when it comes to this topic...

...of babies...
...of new life...
...of friends being pregnant...
...of hearing about due dates and births and genders...

I've struggled, and I confess, I've sinned. I've been jealous. I've felt envy. I've been sad knowing they're having these incredible pregnancies, happy sonograms, and holding perfect 8lb babies. We've known so, so many friends to be pregnant with us when we were pregnant with Chloe. Friends who found out about their pregnancy while I was carrying Chloe and preparing to deliver her. Friends who've had their babies since Chloe was born. I've watched ultrasound pictures get posted online. Watched gender reveal parties. Read birth announcements. Seen first images of newborns, fresh from the womb.

And sometimes I cried. And sometimes I rejoiced.

It's been hard walking this road. This road of the bittersweet. My friends have done nothing wrong, and nothing to wrong me. They've been amazing. They've loved on us, prayed for us, baked for us, they've blessed us beyond our comprehension. And yet I've struggled with why it's bothered me so much when I hear of the latest prenancy...  I think it's because, although I get really sick with pregnancies, I've enjoyed being pregnant and soaked up each moment of it, even while cursing the last meal that just came back up. But with Chloe...I lived every single day wondering if it would be her last? How would I know? What if I didn't feel her? We missed out on the happy sonograms, getting a sneak peek at our growing child. It took a lot of the joy out of carrying her, and that's my own fault for not trusting the Lord to grow her fearfully and wonderfully.

But each day, and each new baby, and I say this because they're everywhere, all around us right now, each day has gotten somehow better. Not necessarily easier,...just...sweeter. I must be honest and say that walking into that hospital, where I delivered my two older children, and where I should have had an amazing delivery with Chloe, that I could feel my heart race a bit being back there, knowing that I didn't have that amazing 'normal' birth experience. But I'm learning that I have amazing friends, who have been so patient with me, and I know love our family so, so much. And I'm learning from them that they'll be there for us. In so many ways. And one of them said at one point that they're so excited that Chloe is joining our circle of friends and kiddos and playmates because their children will get to experience the precious gift that Chloe is, and that Chloe will teach them so, so much. While I've been sitting here pouting that I can't have 'normal' playdates or that Chloe won't be anywhere near the 'normal' milestones, my friends have been reminding me that they love her no less. That if anything, they love her more than I could ever imagine a friend to love another's child.

And I am blessed.

There are days that are hard. Days seeing other babies who were born around Chloe's age because I see what a healthy five or six month babies look like, sounds like, moves like. But I also find myself rejoicing that their babies are healthy and thriving. I'm learning, one day at a time, how to take down one brick at a time of that wall that I've built up, and allow myself to love others more and to be thankful they're in our lives and that these will be the friends our littles, including Chloe, grow up with.

One layer at a time am I allowing God to remove the bitter, and replace it with more of the sweet.

So today, I got a text from my friend saying that her daughter was here, and that, "She can't wait to meet you and her new baby buddy Chloe :)." 

And we sat there, me in the rocking chair, and my friend delicately in her hospital bed, as I held her amazing new gift from the Lord, and we talked of childbirth and exchanged stories. Of how our hearts are to love more than one little being, and if we're loving one more than another and how that's not even possible, and yet as mommies of more than one child, we actually spend some sleepless nights wondering if we're doing a good enough job loving them each the same. We talked of homeschooling and public schooling. We talked of nursery decor and cricut cutters and making homemade ornaments for our Christmas trees this year. And I held her sweet, dark haired daughter the entire time. And it felt so, so good. And it was such an amazing moment for me, to know and truly feel that my heart is growing in love for each child because every. single. life. is. precious. And it was peaceful, knowing that Jesus is tearing down that wall I've built...and allowing such love back in.

I love that Chloe will be surrounded by so many amazing and godly women who care for me, and for her. I love that Chloe will have so many friends who will love her, and who she will teach about life and love and beauty and the Lord. I love that although society sometimes excludes such amazing children like Chloe, that our friends will love her as their own. I'm excited about playdates again. I'm excited to teach my friends' kids about Chloe. I'm excited for this next new chapter, now that we're home. I'm thankful to my friends, who have been so incredibly patient with me and forgiving towards me for not knowing what to say or how to act simply because they were holding their newborns while mine was still in the NICU. Seriously, thank you to each of you who have been so patient in loving me through this hard time. Please forgive me for the silences when my heart just wasn't ready to rejoice, for the tears, for the awkward moments when I knew you had new news to share, and instead you watched me fight back tears instead of sharing in your joy. Thank you for your patience and love towards me. 

I'm thankful that He's changed and molded my heart in a far different way than I would have done on my own. He's taken the bitter within me, and He's made it sweet. He's taken the sad, and made it joyful. He's taken the hard, and He's softened me. He's taken the jealousy and envy, and replaced it with overflowing love.

Finding Normal

Brace yourself. This isn't the post you probably think it is. And it includes nudity. Don't say you weren't warned. Keeping it real, folks...

Today is Monday. Monday is family day. Family day consists of us being Chloe's nurses. We do it all on our own on Mondays from 6am until 9pm. It's our rare chance at personal family time. We do this on Saturdays as well. And though we're gaining nurses we love, and are so thankful for, we so look forward to those days and wish we had that each day.

Today has been relaxing. At least somewhat. This morning was a bit more of a whirlwind. Chloe had a rough evening yesterday and ended up throwing up 30ml of fluid...that's over an hour's worth of feeding. It's like a thanksgiving meal to her. And it all came up in three episodes back to back to back. Our nurse was awesome and knew to sit her up so she wouldn't choke on it, even though she was still coughing on it. I was upstairs bathing kids when this happened. To say it scared me a bit is an understatement. I was then on the phone with the Home Vent team at Children's asking what we should do. In theory, she shouldn't throw up with her fundo she had this summer, but it is technically possible, especially the older/bigger she gets. And thus she did. They said it is most likely that she is just not tolerating her increase in feeds (we went up from 25ml/hr to 26ml/hr this week) and to go back down to 25ml/hr, and if more throwing up continues to give her Pedialite via her tube instead of formula.

I found myself two hours later, once Alan was home from work, purchasing Pedialite at my Happy Place (Target) just to be armed incase it happened again. And I also found myself calling my hubs to say, "Hey, can you please call Home Vent back and just ask to make total sure for worst case scenario, what to do if she throws up again and if she'd aspirate? Do we bag her? Do we do an emergency trach change and then bag her?? Do we do CPR and bag until EMS arrives??"

That was our "normal" yesterday. That was our "this is our new life" moment. We truly have conversations including EMS and CPR often. Yesterday I cleaned out the Frozen puzzle case that was having issues and put the puzzle pieces in baggies, then looked at the bottom board of the base, and realized it'd work perfect as a CPR board for her size, so under the crib it went. See, this is normal for us.

A few days ago I was released from duty to go to Radina's and sip coffee and work on my Etsy shop. I was on a high because the day also included a date night with my hubs after the 9pm nurses showed up. There was a loophole in the universe and we ended up with two night nurses because one was still orientating. We had a friend lined up to be there with the kids and do bedtime so we could sneak out, knowing that there were three competent adults in our home loving on ALL our kids. But alas, twenty-three sips into my pumpkin spice latte, I received the email saying one of the nurses was sick. I knew immediately our much anticipated date night was not going to happen. I was bummed. It takes a lot to pull off date night. We need it for the sake of our marriage and sanity. We needed it something fierce, but it wasn't going to happen. But we tried our best to not get too upset and just went with it-what else could we do?

This was our "normal" the other day. No date night was "normal" for us. No date night in the last month has been our "normal"...unless you count sneaking out of the PICU for two hours out at Taco Republic the eve before we brought her home again.

We're getting slowly acquainted with this "new normal"...and yet, there's nothing normal about it.

Well, there might be a few normal moments. Normal parenting moments. Like noticing the boogies wiped on the hallway wall and asking my husband if he knew anything about the boogies about 3 foot high wiped on the wall. And then today, when my little ballet dancer twirled her way over to the stairs and plopped down on them. I asked what she was doing, and she leaned forward so I could see her finger. I asked her if she had a boogie and was about to wipe it on the wall. At least she was honest in her confession.

So today, we relaxed. We baked biscotti together. We traded off calling the various doctors this morning to update them from last night's spewing episode. We talked to the company that delivers her Lovenox injections. We updated Home Vent team. We received our November supplies from our med supply company in town. It's like Christmas in here with boxes and bags everywhere of supplies. And Abi twirled in her dress and asked each of us to dance with her. And we did. To Christmas music blaring in the house. And there was tickle time with mommy and children. And there was book reading time and cuddles with daddy and children. And Isaac's wild imagination today. And Abi's gentle, loving spirit, telling us a thousand times over, "I wuv you." And melting our hearts each time.

But there was still a moment this afternoon where I looked at my hubs and said I was anxious, and I didn't even know why, other than because I've barely been out of the house in the last two weeks, other than to the hospital to get her levels drawn and to Target to grab a few groceries. Because I read a chapter in the book Bittersweet about this lady having a dinner party with all her friends in their different walks in life and how sweet it was to read of such togetherness, and realized I haven't been surrounded by my girlfriends for chat and hangout time in forever. Because we haven't done one unscheduled thing in months. Because we can't do anything unscheduled these days because it's all dictated by the nursing schedule. Because it was looking gloomy outside today and depressing my mood. Because I was in a funk and anxious. So upstairs I went, for a 30min soak in a hot, steamy tub.

And two minutes later, a little princess followed me.

As I set my Real Simple magazine on the edge of the tub and slid my foot in to test the hot water, a little voice rang out right behind my bum, and she was already stripping down...

"Mama, are you taking baff? You're taking a baff!! Oh, oh can I take a baff wif you!!?"

"No sweet, sweet little child, you may not. Mommy needs some mommy time."

"Oh, ok. Well I will rub your back!" Then she disappeared, only to return seconds later with my lotion on her tiny little hands. The smell of eucalyptus infused my senses as she gently rubbed and patted my back and arm.

"Ok, thank you for my back rub, sweetie! Now why don't you go downstairs and play."

"Oh, my hands is sticky now, Mama. I go wash dem in da sink!"

Meanwhile, a preschooler wandered in, and this time I tried to hide the nethers and peaks a bit for a tad more privacy and a bit more innocence to his eyes.

"Hey bud, why don't you go downstairs and play video games with daddy!!"

"Oh! Good idea!!!!" He ran off, only to return seconds later saying daddy said after Mommy gets out of her bath can they play video games. Facepalm.

"So Mommy, did you know that a new SONIC movie is coming out!!!! It's coming out and it's Sonic the Hedgehog. Do you remember Sonic?? I wuv to pway Sonic!!!! And it's a MOVIE!!! Do you like Sonic.....," My sweet, growing boy, proceeded to tell me all about his favorite video game character, while one hand rested on the edge of the tub and the other on my back, rubbing.

"Hey buddy, how about you go play downstairs for a bit, Ok? Mommy needs some quiet time."

"Oh Mommy, you forgot to take your ring off!!! You need to take your ring off when you're in da baf. You should take your ring off. Oh, and you can pway wif my toys if you want. It's ok, they're right there. You can play wif them. Is the water hot? Or just warm? I don't like my baths hot, just warm. Daddy makes them too hot, but you make them warm. So do you know what?? Sonic is awesome!!...." By now he was sitting on the edge of the tub, one pudgy little boy hand, with dirt under the nails, rubbing my back while the other rested on the tub edge to balance him. He talked non-stop for nearly ten minutes about Sonic and Sonic racing, his sweet breath only inches from my face. He was so excited. He just wanted to talk to me...and he had me cornered to do it. And he rubbed my back the entire time. And it was so sweet. A bit awkward, but sweet.

And then I couldn't help but laugh as I looked over and asked the princess, with her auburn hair falling in tangled wisps around her neck and face, wearing her princess dress (hand-me-down flower girl dress), with her Frozen necklace and her Hello Kitty necklace on, and what appeared to look like she was putting on my makeup. I asked her what she was up to, and a little head peeked around the door, holding a Q-tip...IN her ear!

"Abi no!! Take it out!!! Only Mommy's do that!! Take it out. You're not obeying! I said stop! Throw it away! Only Mommy does that!!!"

She knew I was cornered and couldn't get to her, so she stood there, starring me in the eye, with the Q-Tip in her ear. Then she whipped it out and said, while looking cross-eyed at it, "Eeww. Mommy my ear had a boogie in it. See!" Sigh. She then proceeded to throw it in the mounting pile of trash that I keep meaning to empty out, and her princess ruffles brushing past the toilet seat while I freaked out in my mind about all the germs that were creeping onto it!

Next, the little princess sat on the edge of the tub, rubbing my arm, while my little man in his Batman shirt and ripped-knee holes sat on it as well, also rubbing my back, all the while I was still desperately trying to not bare all. We were quite the sight. And they gibbered and jabbered and I laughed. Till I cried. And hollered for Alan. Who walked in, took one look, and burst out laughing and asked if he edited it and censored it if he could get a picture for the kids' baby books. NO. But we laughed so hard I nearly peed, which wasn't a possibility since I was in the tub!!!

So much for five minutes of peace. He left with the kids and locked the door behind him. I thought I was in the clear to relax, until I heard a muffled voice pressed against the door in "Do You Wanna Build A Snowman?" fashion saying, "Mommy, wet me in! Wet me in! I want to come see you! I'm tired of pwaying downstairs."

We laughed through it. I went upstairs depressed, anxious, somewhat sad and self pity party for not getting more time out of the house, but then realized that these moments, these awkward family moments of laughter and love and togetherness (although the family bath was a bit too close for me), this is what it's about.

A friend and I were discussing the term normal the other day, and she said you know, there's really no normal, for anyone. That the word normal isn't really a good word to describe anything because what is normal? It's different for each person and each family. And in our case, we've been trying so hard to cling to the idea of a new normal. But now...I'm giving up on the word entirely. We're living life. One day at a time. One crazy, wacky, fun, sorrow and joy filled, day to day life. I choose to say we're living life, and an abundant life at that, not choosing to say we're finally figuring out our new normal. Because it doesn't exist. And I'm finally letting go of hoping it would.

And that's ok.

Praising Him tonight for these precious, tender, awkward moments of joy.

We Are HOME {and we are THANKFUL}

Our Chloe is home.

Our family is together.

Our hearts are full to overflowing.

It has not been without difficulties, sacrifices, hard lessons, and learning to live our lives in a completely different way. But it's so, so worth it. It always is.

It's included tears. On the first few days, when "normal" settled in and I realized I can never just go somewhere. I can't just get out anymore. It's included frustration and fatigue. It's meant no such thing as a date night out. It's meant hours upon hours of orientating new nurses. It's meant moment after moment of reminding the children why we can't do certain things.

But I continue to be amazed. Not once have the kids asked why. Not once have they questioned why things are so, so different than before. Not once have they complained that we can't do certain things because of Chloe. Instead, they've been amazing. They've taken to some of the nurses. They ask what time the nurses come. They ask if they can help. They help get us supplies, gloves. I constantly find random bows in Chloe's crib, thanks to her big sister.

And it's included so many moments of "wow, our family is together," and, "whoa, we're a family of five," moments, the type that just kind of hits you and you're in awe of the very moment that you look around the room and see each person enjoying being part of this crazy family.

We brought our sweet girl home October 3. Then flew her back on October 13. She got a virus. A "cold" to us, but we couldn't hear her murmur quite right. So we spent the next 8 days in the PICU. And we're back again. And there was fear in that moment, when we sent her on the plane, in a storm, back to Children's. But He brought us through that storm, just like others before...

And we're doing this.

And we're adjusting.

And it's the hardest thing we've ever done.

And we're learning sacrifice. Give and take.

And we're blessed.

And we're thankful to all those carrying us through this. For the random friends showing up with coffee on cold mornings after long nights. For friends bringing food with steam curling off the top of the dishes and filling our tired bellies and souls.

And we're learning. We're learning her schedule, the kids' new schedule, new work schedules, new nurse schedules.

And we're smiling and rejoicing. And we're dancing in the living room to White Christmas on family movie night.

And we're rocking our sweet girl.

And we're playing more with her.

And we're soaking up every. Single. Minute. With her. With our family. Togetherness.

And we're so, so thankful that she is here. She is home.

And we continue to take this road one step at a time. One prayer at a time.

And sometime, when I have a coffee in one hand, a sleeping baby next to me, and children quietly playing, I'll write more. I'll write about the hard days. I'll share about the good days. I'll let you laugh with me about the chaos that is our household. I'll share stories of love and laughter in our little home. My heart aches to write and my fingers to type. I long to share, especially with other new mama's and daddy's of little special kids, and especially with families anticipating home health care and what this crazy journey is like...

But right now, I'm focusing on family. And life. And new routines. And my sweet, sweet baby.

And as the weather chills and the hot chocolate swirls, and the calendar starts to look a lot like Christmas, we stop first this month, this new calendar month of November, a date we were originally told we'd never see with our sweet daughter...

...to give Thanks.

To all of you.

To Him.

*Follow Our Chloe Elizabeth on Facebook to see updated pics since we've been home