Saturday, June 13, 2015


There might be a title by the time I post this, but not sure that title just yet.

Today is a heavy day. Last night we learned of the passing of sweet baby Piper Grace. We'd gotten to know her mama and watch her story unfold over the last ten months. She was even in Chloe's old bedspot at Children's, and had many of the same nurses and doctors. She was a true fighter, and you can read her stories and journey here.

They walked a hard road, but with such grace and love for their little one. This path, this crazy gravel, dirt, but sometimes daisy and lily framed grassy walkway is hard. hard. It's hard to read posts like this-the ones you knew could possibly happen but prayed mightily that they wouldn't. It's hard to watch parents as they embrace sweet last snuggles. It's hard to know that could have been us, in that same bedspot on the same D pod a year ago today...

On June 13th of last year, we started off our day with morning snuggles. The day before, we brought the kids up to meet Chloe, for I believe only the 3rd time ever.

The above pictures are still some of my favorites. It was the first time Chloe got to get out of her crib and meet the sibs. They were fighting over who got to hold her. I love the patience and gentleness with which our nurse applied while mentoring the kids through sharing Baby Chloe. There were smiles all around. 

The next day started with Daddy snuggles for the first time in a month. The last he was able to hold her was May 15th, so this morning bonding time was so precious. 

That afternoon we brought the Bigs up to see her in her swing for the very first time!!
It was my first chance to get a picture with all three of our children. As you can tell, there was much cooperation. 

That afternoon following the kids getting to see Chloe in her swing, some family came by to meet Chloe for the first time. It had been a long day and after the visits, we knew we needed fresh non-hospital air and the kids needed to run off energy. We went to Target for a few RMcD house supplies, then to the backyard of a friend so the kids could run and we could  j u s t   s i t. Alan played with the kids downstairs. I cleaned my friend's kitchen. I needed to do something mundane and normal. So I cleaned her kitchen. Then we all packed up to head back to the hospital.

And got the call that Chloe had aspirated and coded. And they were still working on her. And they were having trouble intubating her. And it was all surreal and in my mind not happening. 

That night, bed D39 was swarming with ENT team, nurses, doctors. I won't go into every detail here and now. But that night burned memories deep within our soul of how fragile our little one was{is} and how on that very night our journey suddenly took on this rugged cliff to get back to her baseline, if that was even possible. 

That night she coded. We almost, nearly, were so close to losing our daughter. I don't know if I can ever describe in words what it's like to watch everyone gathered so closely around her bed that you can't see her in the crowd, but you know she's being helped and you stand there gripped with fear for your child and praying without ceasing. I will never forget our primary saint {nurse} Amanda and all she did to help Chloe and us that night, even down to mouthing "she's doing OK" to us over the heads of the team working as we sat nearly ten thousand miles away, when in reality it was ten feet. Our hearts are forever grateful for that amazing nurse. 

But the Lord sustained her. I don't know why this side of Heaven the Lord keeps some to live and some to take away so soon. My heart cried last night as I learned of Piper. But she fought such an amazing fight, and her parents were so unbelievably genuine and caring and respectful of their daughter's need to not suffer on this earth knowing that her little body was struggling. As she said in her blog, we don't know the reasons why, and she thinks she's ok with that. And we don't know the reasons why Chloe was doing so good and then suddenly aspirated and coded and needed to be intubated...why this journey had to involve a trach placement instead of coming home to rock it on just heart related issues. We don't know any of these details. 

But we know that in all things, God has a plan. And that's not a simple smooth worded cover up for saying we wish we could have our wants and desires. We truly believe He does have a plan in all of this that we'll know one day, face to face. We don't know why we've watched as Miracle, Austin, Remington, and now sweet Piper have not continued their journey here, but we know that they're all in the arms of Jesus. Piper's mama said it so great, 

"Who says you have to live to 86 to have a full life and leave a mark on this world? Piper has reached so many in her 10 short months, more than I could imagine, more than we will ever know; and for that, I am so proud.  
Another thought: everyone's prayers are different. If your prayers for miraculous healing went unanswered, it does not mean God was not involved. Ask yourself: what has Piper taught me? Can you imagine the infinite answers ranging from tiny to huge? Thank you, Piper Grace, for teaching us."

And if you ask us when Chloe's upcoming surgeries are and what's to come, don't be surprised if we choose to give a few details and then not discuss surgery further. It's simply because we want to soak up these days with our baby girl enjoying the fact that she's home, and not dwelling on the fears surrounding surgeries. We would rather talk about the snuggles we got the other day when we held her, or the orneriness of her yanking her sat monitor, or the fiestyness of coughing the very minute you leave the room. The fragileness of this life is always fresh in our minds. 

Piper Grace, we will miss your sweet smile something fierce. But you've taught us SO much, and we will carry all of that with us as we continue on with Chloe. There's a print that's near and dear to your mama that I had the joy of designing for you. Darling girl, you are now free to fly into the arms of Jesus. I'm hanging it up in Chloe's little room here as a reminder of all you've shown us, praying for your family in the days to come, and rejoicing that you are now with your Savior. 


Post a Comment