|Marfan Syndrome Family Easter in the Children's Memorial Garden|
|Easter Sunrise Service, Downtown Flagler Beach|
|Flagler Beach and the Big Salty Pond|
The last year and a half has been a challenge in many ways for our family. I wake every day to the same and new, different challenges with Marfan Syndrome problems, but bottom-line grateful I awoke. Because I have finally realized life is so precious and tenuous I offer up a prayer of thanks and beseeching every night before I fall asleep. If the night is to be my last I want to go out in a thankful mood.
Judy has been fighting her auto-immune inflammation and hopefully may have found some relief with an older acupuncturist here in Palm Coast. Jincy and Ruairi forge ahead with school and social activities, and with all the competition in school I worry about their dilated aortas. On an aside note, I do not understand why the State of Florida and Governor Rick Scott have upped the SAT and ACT score requirements form high to nearly impossible for Bright Futures Scholarships, without an exception for children also battling a disability challenge. Jincy has over a 4.5 GPA and Ruairi a 4.7 GPA (A=4.0) because of they study so hard and do so much extra credit work. Teens that work that hard, with grades that good all the while battling disabilities should have access to the state's lottery money supposedly dedicated to education.
|Jincy and Ruairi have their own Marfan Syndrome Challenges, but they forge ahead, unstoppable-like|
Seems like the two teens time in high school just started yesterday, too. And the grandchildren teens (son and daughter of Judy's second oldest daughter who recently had a serious brain aneurysm) Dylan and Dharma have been here six months in May. Yes, time flies.
A year and a half has also passed since baby Heidi (Judy's daughter Leslie's baby girl) died. Leslie and her husband still struggle with so much grief. Shortly thereafter I hung a set of wind chimes on a beautiful scrub live oak in the Children's Memorial Garden overlooking the intracoastal waterway. The memorial garden is full of wind chimes placed there by others in a child's memory.
|Children's Memorial Garden Overlooking Florida's Intracoastal Waterway, Live Oak Nestled|
But not only are there beautiful melodies sounding of a child's choir in the air, the garden is full of beautiful colors and textures, art and nature combined together in love.
|Heidi's New Wind Chime is tied next to her Frog Chime in the Memorial Garden|
The four teens and I talked about thankfulness, remembrance, love, kindness, memories and a bunch of other esoteric topics I can't remember now, on the way to the intracoastal. We also talked about baby Heidi and her parents and her brother. I reached up and held the two silver hearts hanging on my medical ID necklace, hearts from my Mom.
|The four teens, Dylan (Grandson 16), Marfan teens Ruairi & Ruairi (16 & almost 18) and Dharma (Granddaughter 14)|
The teens and I enjoyed out time in the children's memorial garden. We listened to the chimes. They stopped and read all of the little memorial stones, pavers and bricks placed throughout the special nature walk. They even reached up to dab a corner of their eyes when they though no one was looking.
Heidi has two wind chimes now. Her frog wind chime is still there. And someone else has placed a big green tree frog on an adjacent limb to look after Heidi's smaller frog chime.
|New Big Florida Green Tree Watching Over Heidi's Smaller Green Frog Chime, Down By The Riverside|
|Stars in the Scrub Live Oaks|
I think, despite my challenged cognitive state and memory, I think I will come back here more often. There is much to learn from a special place full of native plants, overlooking the edge of an eternal ocean and full of children's twinkling and chiming voices, especially for an old man like me.
|Easter Eggs for the Children in The Memorial Garden down by the Intracoastal Waters|