dravet day

Last night Grace reminded me that today, June 23rd, is International Dravet Syndrome Awareness Day.

The Dravet Foundation lists one characteristic of children with Dravet syndrome that is unlike many of the medical or behavioral challenges that Dravet patients face. The website says, “children with Dravet syndrome can exhibit a variety of behaviors, including being overly social…”

That was not something I expected to see among a list of symptoms that include: - Prolonged seizures - Behavioral and developmental delays - Movement and balance issues - Delayed language and speech issues - Sleeping difficulties - Dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues

Synonyms for overly include excessively, exceedingly, wildly, unreasonably, impossibly, immensely, and outrageously.

One definition of social states, “relating to or designed for activities in which people meet each other for pleasure.”

It seems to me that being overly social could mean excessively interacting with others for pleasure or perhaps being immensely inclined towards people. Whether this behavior stemmed from Esther’s syndrome or her nature, I believe it was from God.

I believe the same God who impossibly gave His Son also gave Grace and me a daughter who connected us to heaven and to each other more than we ever could have alone.

I believe the same God who unreasonably gives His grace gave us an angel who spread goodwill and joy more than anyone I know.

I believe the same God whose exceedingly great gift to the world was His Only Begotten Son gave us the additional gift of Esther, too.

Esther is a picture of God’s goodness and Grace shared some pictures and a video with me this morning that reminded me of that again.

A year ago, on June 24th, Esther had a seizure in the late afternoon that put her in the hospital for a couple days.

We came home on the evening of June 25th exhausted and drained.

Early in the morning on June 26th Grace captured this tender moment of Esther loving on Remi because Remi was crying. Esther could hardly move and barely function, yet still found the strength to comfort her baby sister.

A few moments later she was lying in bed, completely energy deprived because she shared it with her little sis.

Shortly after, Esther was asleep. Just hours after waking up for the morning.

Esther gave so much of her life for others 💜

Reminds me of Him who gave His life for you and me ✝️

--

I love You, Lord For Your mercy never fails me All my days, I've been held in Your hands From the moment that I wake up Until I lay my head Oh, I will sing of the goodness of God

'Cause all my life You have been faithful And all my life You have been so, so good With every breath that I am able Oh, I will sing of the goodness of God