Do not wait for someone else to come and speak for you. It’s you who can change the world. ~ Malala Yousafzai

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Love is me…and love is you. So when you smile, I smile too. When you’re around, the skies are blue. It’s like being happy! Times two!Love is sweet…and love is GRAND!Sometimes love is just holding hands. It’s a feeling inside. It’s a smile in your heart.It keeps us together when we’re apart.Love is fun! It’s feeling…

It’s almost been a year…and every year, around this time, I start to get a little bit nervous. Every year around this time, we start planning for and talking about little M’s next cardiology appointment. She knows what to expect…she knows she will get an EKG, and echo, her cardiologist, Dr M, will listen to…

I love you as much as a human heart can love. ~ this is us

Each bead stands for one single event that happens to our girls while they are in the hospital, whether they are inpatient, or just there for the day. A yellow bead means they stayed overnight, black beads are for getting poked, there is a bead for surgery, and a glow-in-the-dark bead for echos… It is…

Sometimes you just have to sit in your box…on the couch. Early morning coloring waiting to get blood work. Funny faces waiting to get her echo… Reading night at school…of course she is the last to leave the library. Donuts on a Saturday…they make us smile. Reading about natural disasters…what else? Snacking and waiting for…

Yesterday our tiny P had her (two hour!!!) ultrasound to check on the clots at the end of her superior vena cava, blocking off her jugular… Tiny P has been getting twice daily shots of anticoagulants since November, to try to get rid of these clots, and at her last ultrasound in December the clots…