Wednesday, December 24, 2014

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. 


  1. And I love this so much. I may or may not have had the ugly cry. :) Rejoicing with you friends!