Tuesday, April 22, 2014

A Marfan Easter In The Children's Memorial Garden

Marfan Syndrome Family Easter in the Children's Memorial Garden
Easter morning was wet, cool and drizzly.  We tried the sunrise service at Flagler Beach but the sight of the bright, easter-egg colored panties under the dresses of the ladies singing church songs and shaking tambourines, being blown up over their heads by the thirty mile and hour ocean winds scooting across the stage in the park, was not what I was looking for.  Give me a hot, black cup of coffee instead.
Easter Sunrise Service, Downtown Flagler Beach
So we went and had breakfast on the pier across the street, overlooking the Atlantic Ocean.  I love the big pond, a metaphor of eternity to me, much like the sky.
Flagler Beach and the Big Salty Pond
Sometimes I wonder if eternity flies by as fast as time here as we know it flies by.  Seems like I was just starting college last month, but it has been forty years.  I still haven't really figured out any of the answers.

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
Jincy has a really good deal at the University of South Florida in Tampa which she has accepted, and I am grateful for her hard work.

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
The wind along the intracoastal is not as strong and brisk as the ocean front wind but still steady enough to keep all of the beautiful sounding wind chimes singing most of the time.  If I was a spirit child, I would go to that salty riverside place just to listen to the jingles and bells and wind softly blow.  As an old man, I also like to go there to talk to angels woven throughout the misty salt air.

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
Heidi's wind chime was showing signs of wear from the breezes and I wanted to get the four teens out of the house and into nature for their daily vitamin D dose.  I'd found a really cool dragonfly chine with just one dangle and figured it was just the chime to attach next to Heidi's original chime.

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)
One thing I don't want flying time to do is allow us to forget.

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 
And there is a beautiful red star in the next tree over.
Stars in the Scrub Live Oaks
As we left I looked down to my right.  Lovely easter eggs for the children here.

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

Tuesday, April 8, 2014

Amazing Power of Marfan Teenagers and Their 'Sibs'

I need to give the two marfan teens and their nephew and niece more credit.  At 14, 16, 16 and almost 18 years old I sometimes think they are still little kids and treat them that way.
Raising four teenagers is a challenge, but they can almost raise themselves now.

Unfortunately my desire to remain 'in control' prevents me from enjoying a clean kitchen, spotless house and a chore-less life.  Yeah, I know I still have to be the boss but the past couple days I've made an important discovery - teenagers can actually be an amazing group of humans!

Judy is off to Ocala to help Melissa with the birth of Jack, our 6th grandchild I think. Yikes!  My memory is so iffy.

When I met Judy she was in proprietorship of Sesha, Kyndra, Melissa, Leslie, Laura and Adam.  We then had Jincy and Ruairi together.

Kyndra's two children, Dylan and Dharma are 16 and 14.  Their mum is now challenged with the after effects of a serious cerebral bleeding episode and while she is doing physical therapy her two are living with Judy and I.

They think they'd rather play video games but enjoy the beach if I make them go...
Time out - I have to go holler through the bathroom door to tell one of them to not allow the water in the sink to continually run full blast while they brush their teeth.  Ok, they are "somewhat" pretty amazing.

The kitchen has been another issue, keeping the sink free of piles of dishes has in the past been difficult when 'Nana' off and about.  In the past when Judy was gone I would try and keep order via demands, orders and ultimatums.  'Don't do this' and 'don't do that' were my kitchen mantras.  But the sink would still pile up with dishes.  It was so frustrating!  Last thing I need with a dissected aorta is stress, right?

After repeated failures at being a successful kitchen dictator I thought I'd try something new this time.  Maybe I'd treat them like almost adults instead of little kids.

So I said as Judy left something like, "OK now you are the grownups in the house.   You are in charge of the kitchen and bathroom.  You figure out what to cook, when and clean up afterwards.  I don't care anymore."  The last sentence was a spiteful unnecessary bard said out of needless anxiety.

Three days now and I am wondering why I didn't ever think of this before.  The kitchen has stayed spotless, they have had fun cooking what they want and laughed and sang to stupid teenager songs while cleaning up after themselves.

All they needed was a little freedom and a chance to act better than many grown ups I know.

Jincy and Ruairi are challenged with many trials.  They both fight slightly enlarged aortas with lifestyle modification.  They both push themselves in school (Jincy is graduating with her AA degree because she dual enrolled in college while a junior and senior in high school) and they have to deal with me.  Jincy is my true secret weapon though.  Turn her loose as commander in chief of chores, laundry, trash and food decisions and the other three say "yes, mam!'  No one, especially younger teens, messes with a tall, imposing and almost 18 year old female.

Dyland and Dharma are worried about their mum and miss being at home.  They both, too, are doing very well in school.  I suspect as a child I would have crashed mentally without my parents.   And Jincy is moving away next month so their support system found in an older 'sib' will be gone.  Yes, they are amazing.  But they really need their mom.  Even though grandparents can be nurturing, life without a parent is so different.  Incredibly though, they are not only a pleasure to have living here, they also contribute so much quality themselves to the unique texture of our patch-work family.

So all the worry about scrubbing piles of dishes was a self-fulfilling prophecy in the before.  When I worried about it and paced the kitchen floor asking to see identification if anyone entered, the whole kitchen thing was an ordeal.

Now, well I told Judy over the phone that the kitchen is actually cleaner than I could keep it in my floppy heart condition.  And the kids are storing leftovers and budgeting food, sharing equally between them.  And they are laughing instead of sulking past my kitchen patrol duty.

Wow.  Just when I think I know it all.  Dylan and Ruairi are headed out the door now to catch the school bus.  I'll never know just how they make it down to the end of the street in two minutes but they always do.  I'd take me an hour to hobble that far.

Dylan just turned and said, "bye, Papa K.  I love you."

At 57, I still get a tear in the corner of my eye sometimes.

Thursday, April 3, 2014

For Marfan Challenged a Clean Razor Can Save Your Life!

Marfan health tip of the day - use clean razors!
For Marfan Syndrome challenged, an infection can be deadly - always use clean razors!

As someone who knows first hand use how bad a case of endocarditis can be, I am always looking for ways to prevent any instance of infection.  If you've not read my posts about how horrible a heart coated in green fungal slime can be, read here.

An infection, anywhere on the body, can enter the blood stream and impact the heart, causing dangerous inflammation.  Inflammation can cause vascular damage in anyone, but especially in those of us with connective tissue disorders like Marfan Syndrome.

Skin infections can quickly reach the heart through a cut or scrape.  Once the cardiovascular system becomes infected and inflamed, this condition can produce deadly results.

Infective endocarditis is especially dangerous for those with prosthetic heart devices such as the mechanical aortic valve in my heart and the Dacron graft across my ascending aorta.

There are many web resources pointing out the importance of using clean razors.  Like dental work, shaving impacts parts of the body close to the heart such as the face, head, arm pits or chest.  MRSA, methicillin resistant Staphylococcus aureus and other infectious diseases can be spread through the use of dirty razors.  The CDC Center for Disease Control and Prevention recommends across their web site resource pages that razors be not shared but be clean and stored dry before and between uses.

SImple little good health and hygiene practices can spare one from a very painful, even deadly episode of heart infection.