Monday, June 24, 2019

This Little Heart...

This little heart of ours, we’re gonna make it shine. 
💙💚
A heart transplant is not a cure for heart disease... it is essentially trading one heart disease for a better, more manageable one. 
Paisley will take immune suppressing meds every 12 hours for the rest of her life so her body doesn’t try to find and fight her heart, which is a foreign object. This is what is most life threatening to a heart transplant patient, and what we live in constant fear of... rejection. 
If her immune system detects her heart/the foreign object, it will attack it. And if we don’t catch this very soon and treat it she could die very quickly. It is very important for Paisley to take her meds on time and to never miss doses.
And because most rejections happen as a result of illness, which revs up the immune system to fight off the illness, allowing the immune system to find the foreign organ, often spiraling into full blown rejection sometimes from a simple cold... you can understand why we transplant parents are such crazy germaphobes. It is so important for Paisley and people like her to stay healthy, and why we are so protective of her health. Any illness could easily mean a hospital stay for her, and could even put her heart at risk.
For the most part, we don’t limit our girl. She was given this incredible gift so that she could live, and she lives wild and free. But we want to take the very best care of this beautiful heart that we possibly can. It is a precious gift that we will never take for granted, and we want to let it shine for as long as it can.
💙💚





Sunday, June 23, 2019

Sunday...

I don't want my kids safe and comfortable. I want them BRAVE... I don't want to be the reason my kids choose safety over courage. I hope I never hear them say "Mom will freak out" or "my parents will never agree to this." May my fear not bind their purpose here. Scared moms raise scared kids. Brave moms raise brave kids. Real disciples raise real disciples. 
~Jen Hatmaker










Friday, June 21, 2019

Friday Phone Dump...

Sometimes, you just have to eat barbecue ribs for breakfast...


He is a good brother...


First sleep away camp is in the books. She loved it...mom did not.


He might be cooler than all of us...


I could watch him sleep all day.


When your sister has a book that plays Frozen songs, and you don't...another such book may or may not be in the mail for him.


Just swinging...


Those finger dimples, though.


When your person comes home from camp, and all is right on the world.


When hospital days run forevah, you break it up with some fun


Summer means everyone goes to the hospital.


It's crazy town, but at least they're cute.


These babies...


Thursday, June 13, 2019

Sunday, June 9, 2019

Sunday...

Go and love someone exactly as they are. And then watch how quickly they transform into the greatest, truest version of themselves. When one feels seen and appreciated in their own essence, one is instantly empowered. 
~Wes Angelozzi



Saturday, June 8, 2019

Graduating Kindergarten (An Open Letter)

To the mother of my daughter's heart...



This next week our girl will graduate kindergarten.
Just over three years ago school wasn't a thing we even dared to wish for her...

But here she is... she is learning to read, she has friends, her teachers love her, she is full of sass and joy and life all thanks to you and the gift of life your baby gave her.


And next week we will clap and cheer for her, we will celebrate how far she has come, and not a minute will go by that we don't think of you and your little one.



We will put a little graduation cap on her because of your baby, and she will get on stage and sing funny songs with all of her little friends because of your baby.



Our Paisley is six and a half years old now...  She is thriving and healthy and beautiful, and for over three years she has been living with her hero's heart beating in her little chest. When I tuck her in bed at night, and kiss her over and over, and sing to her with my hand on her chest, I feel her hero's heart beating so strong under my hand and every time it takes my breath away. And every single time, I am so thankful for you and the gift of life you gave us.



We think of you, and we are thankful for you, every day.