Start Singing Again

With so many pictures and videos from the beach waiting for me to post and whales of stories to share, there is only one thing today.

For everyone who has loved her with us from the beginning and for all of you who have come to love her along the way, another magical day is amongst us-

We are so honored to have the ability to share our little ordinary miracle with you. So many of you include her in your prayers and there has not been a day that those prayers haven't been felt. Today some of those prayers have been answered and amplified. I only wish I could share with you the pure joy that today brought to my soul.

I thank God for the blessings he gives us, in His own time, not ours, so that we can truly be thankful. Amen.

IVEY NOW HAS HEARING AIDS!!!!!.

Now if only there were a way for her to hear all of you saying 'YEAH' as you read this….and as you can see and hear in the videos, we are working with sensory override most of the time around here.

And Sometimes Feeding Your Kiddo Looks Like This...

A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU. My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself. That decision did not come lightly. Another hole in her. Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival. Literally to give her a chance to live. A permanent decision. A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...

Sibling Secret Sauce

Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...

For the Love of Ivey

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