Monday, December 21, 2015

Lessons From Mary: How To Not Freak Out

Christmas. Where it all began.

Two Christmases ago, and almost to the date of this post, our ultrasound didn't go as planned, and we learned I was carrying someone very unique, who many thought wouldn't make it.

I cried. Ok, sobbed. I was disillusioned, distracted, distraught. My mom was in visiting and took me shopping for maternity clothes to which I remember telling her that I didn't know how much longer I'd be pregnant so it wasn't really worth the new clothes.

I didn't exactly embrace this news well. We had our own dreams for this child. Our own plans. And they included a healthy baby, a simple delivery at our local hospital, and days on end spent cuddling with a newborn come spring while our then 2.5 year old would potty train herself as I would watch from the rocking chair, and our then four year old would teach himself to read. Because that's how it works when a new baby is welcomed home, right? Our lives would include school starting for our son, ballet classes for our daughter, and every perfect milestone met by our baby.

Until that ultrasound changed everything.

It's Advent again. Last year, our sweet Chloe was home for Christmas, and in a way, the Christmas season was redeemed for us a bit. This year, we longed for her to be home from her second open heart surgery in time for Christmas. And here we are, hanging out in the living room this morning, the kids snuggled in their tents that we let them sleep in last night with me while I was the night nurse in the front room by her crib. We're nestled by the tree this morning, the only lights in the room from Chloe's monitors, the Christmas tree, and the TV gently telling us the Christmas Story through youtube videos. The gifts are all wrapped under the tree. The stockings are ready. The anticipation is unbearable for our six and four year old kiddos, who are counting down the days on their red construction paper chain.

I was reading with my son the other day about when the angel appeared to Mary and told her she was going to bear a child who would be the Son of God. Her world was rocked, and I don't think slightly. So it was kind of like the world's first gender reveal party, only instead of balloons released from a closed cardboard box with guesses marked on the side, it was heralded by an angel, whose voice I can only imagine as pure and filled with joy and excitement and gentleness and anticipation, in a dialect that breathed Heaven.

And Mary cried. She sobbed. She was disillusioned, distracted, distraught. God had rocked her world and she was carrying someone very unique but it wasn't part of her plan. So she freaked out.


That's how I reacted to Chloe. That's how many react to bad news or unexpected news. Mary, however, stayed focused, eyes fixed on the Lord, and simply replied, "Behold, I am the servant of the Lord; let it be to me according to Your Word." {Luke 1:38}. She knew Who was in control of her life, and she simply trusted in Him. That doesn't mean she wasn't afraid, but she didn't let fear overcome her {and I'm guessing in the days before epidurals that she probably was a little freaked about the whole birth the King part}.

I have so much to learn from Mary. She embraced this new journey with joy, thanksgiving, and obedience. She declared the Lord was her guide and that she'd do this for His glory.

We're only human. There are going to be moments when I wake up, stir for a moment in bed before my feet touch the floor {probably flipping through instagram first}, then sitting up to realize there is a ventilator whirring in my room. There are going to be moments of disappointment and frustration at my goals vs. the world, like PT saying she's not quite ready to bear weight on her legs yet after we thought we had made progress to this point. There are going to be days where I'm distracted and upset, and probably hormonal and most likely in need of copious amounts of coffee in order to make sense of it all, of the fact that we have two healthy children, one medically compromised child with a weakened heart, and one already in Heaven, who we won't know until then whether it was a boy or a girl. This isn't the family I thought our marriage would create. This wasn't our plan. And last year, my heart stayed cold in that season of bitterness and blame-placing, trying to figure out why He'd do this to us, but saying through gritted teeth that we'd do this for Him. I didn't embrace the thought that perhaps this, perhaps our lives raising Chloe, is what He wants for His glory. I didn't allow myself to grieve the child we thought we'd conceived. There's a lot of grief that goes along with having a special needs child, and we're just now learning that's OK. But that's a post for another day.

But here's the thing: This is the life He chose for our family. These are the people, our own little tribe, that He has lovingly placed in our care because for some odd reason He thinks us capable. We're learning during this chapter to embrace and remember the fact that when we each declared we'd live for the Lord, that it meant to lay down our lives, die to self, and life for Jesus and His glory. So who are we to say He messed this one up? That He didn't get this one right, this wasn't how it was supposed to be?

We're not. What we are called to do is be obedient to the calling He's placed upon us, to keep our eyes focused on Him during it, to remember that in this world there will be trouble, but to remember that He has overcome the world {John 16:33}. That He did this as a simple, rag-wrapped baby in a manger. That He became low, even to the point that His precious little newborn life was resting only inches away from the dirt and muck of a stable floor. And He did this for us. If He was willing to bow so low in order that we would be brought so high, then anything He throws at us or puts in our path should be worth it. It's taken me some time to get to that point, and in all my human-ness, I'm sure that any unexpected curves He throws us in the future will be met with fear, anxiety, and freak outs again. But the point is that we're choosing to not live there. Camp out there for a milli-moment perhaps, but then look up to Him and know He's got this. And that when things are good, that it's also OK to embrace the good and to feel blessed, being reminded that sometimes our Lord just plain likes to love on His people.

So this Christmas, we're embracing the fact that this is the story He's writing in our lives. This is the family He created. This is the calling that He's asked us to be obedient to with joy. It's hard, no doubt. But it's worth it. And even though it's not anything like what we imagined it would be {says the mom who now homeschools even though she was entirely convinced she never would}, we will be like Mary and sing, "My soul magnifies the Lord, and my spirit rejoices in God my Savior." {Luke 1:46}.

Saturday, December 19, 2015


We're home.

Yes! We're HOME!!


I apologize for not updating, but it's been a whirlwind, and not the snowy kind with pretty white snow, but the "adjust back to daily schedule" kind. It's been good though. We've all much needed home, and sunken back into the coziness of our own beds, our daily routines, and our own dinners together at our very own table.

And then on our first Saturday home, I accidentally pulled out Chloe's GJ tube and we had to pack up all the kiddos and jump in the car to take her back on the two hour drive to have it placed again at the hospital. So we were almost home. Kind of. But all is well now.

We've adjusted sleep, and have Chloe in our room because she is now sleeping through the night and requiring less suctioning or needs at night. Our new routine is to take her up to our room around 8pm or just after night time meds are given. I carry her up with her travel ventilator strapped across me, and Alan follows behind with the vent stand, other vent, humidifier, then we both trade off running up and down the stairs to grab the suction machine, sat monitor, cords, meds, and essentials for the night. It's a tiny bit of chaos and a whole lot of peace knowing our daughter is right beside us all night long without the need of night nurses. Such a huge, HUGE prayer that has been answered. It's similar to having a newborn in that we wake up at odd times, either to suction or to assist a piece of equipment, like fill feed bag or water humidifier. Sure, there will be nights we won't get much sleep if she's restless, but even her restless nights (and she had three in a row when we got home) were still so much better than all of last year that we were home.

We've adjusted the kids' schedules and are back into a routine of greeting the day nurse, scarfing down breakfast, giving reminders that it's school time and not lego building time, and hugs and kisses for the Daddy as he ventures off to work, in his own office, with his own standing desk, and no more two hour commute and five days apart.

Kids do school work...

...and we cuddle. 

We've put up the Christmas tree, wrapped it in white lights, and sang hymns at the piano, all gathered around Daddy as he sings Christmas carols. We've opened a new book each night and read together, with Chloe curled up on our laps.

We're doing this. We're breathing a bit lighter and less constricted, though we're not out of the woods just yet. Our goal at home is to wean her off her oxygen and wean off ventilator again, and just continue to thrive and grow until the spring when we hope to begin the process of fixing her cleft palate and lip. Growing and thriving includes PT and OT coming to our home, daily PT and OT with me or the nurse or Alan helping. The oddest thing is that she graduated from the CHAMPS (heart home monitoring program from Children's Mercy) program, certificate and all, so we are no longer required to weigh her daily or weigh every single diaper since we have from her birth. Feel so, so weird to just throw a diaper away and not put it on a scale first, then enter it into the app for CHAMPS on the tablet they'd provided so they can see instantly how many grams that last poop was. For real: This is NEW territory for us. And scary. I find myself wanting to weigh them to know her output. 

Chloe showing off her certificate and also watching her first Tinkerbell on the big TV. She loved it. Till she fell asleep. 

And most of all, we're thankful for each and every one of you who prayed us home and loved on us through quarantine. Your encouragement means the world to us and to Chloe. 

From our family to yours, Merry Christmas.