All hands on

Thank you so much for blanketing us with your payers and words of encouragement this week.

Rhema holding hands with her dad during EEG hookup.

Rhema holding hands with her dad during EEG hookup.

 The EEG was challenging. But we were able to get the leads on and keep them on (sort of) so I’m calling it a success!

During an ambulatory EEG, you are advised to dress your child in a button-down shirt because you will not be able to pull anything over her head. I rarely follow that instruction because I can never find a cool, comfortable button-down top that Rhema will wear. I just put her in a shirt I’m willing to cut off if need be. This time Rhema had an accident overnight, completely soaking her shirt and the hospital-issued backpack containing the electrodes.

A scene played out in our bathroom that I won’t forget. Brandon holding the EEG equipment close to her head while I carefully removed the wet clothing and cleaned her up. Rhema doing her best to stand still. And Hope, when she wasn’t running to get whatever we needed – from scissors to another backpack, she was there holding Rhema’s hand.

Sniff. I could almost see and hear the Sesame Street puppets parading around the room, singing “Cooperation Makes it Happen.”

As we headed into the kitchen for breakfast Hope said to Rhema, “I’m so glad God made you my sister. He knew you were exactly what I needed.”

Rhema never indicated that she heard or was paying attention, but that’s always been fine by Hope. Hope will often take what is said to her and turn it around. She’s heard people say, ‘Hope is exactly what Rhema needed’ or ‘Hope is so good for Rhema’ or ‘God knew what he was doing when he put Hope in your family.’ It’s all so true. But I love Hope’s perspective. That Rhema is good for her, exactly what she needs.

My friend Jett once wrote to me after a hard day with Rhema: He made you for her. And He made her for me. God put this little family together; all of us were created with the other in mind. Each of us imperfect but somehow perfectly given. It’s good to remember, to say it out loud.

Brandon, I’m so glad God made you my husband! You are so good for me. You are exactly what I needed.

Rhema, I’m so glad God made you my daughter! You are so good for me. You are exactly what I needed.

Hope, I’m so glad God made you my daughter! You are so good for me. You are exactly what I needed.

.

“It’s love, it’s love that holds us. We will be alright.”
~Brooke Fraser, Deciphering Me

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8 thoughts on “All hands on

  1. Our experiences are so similar! Amy’s love and acceptance of Jack, even when he totally blows her off, is such a blessing for me to take in. And our little family — the moments we share, the rhythm we have that is so different from others, those times when we are working together to keep Jack safe or clean him up — sometimes I honestly do stop, look around and just think to myself how cool it is to be so close to each other..

    Love you.

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