Sunday, May 24, 2009

Falling In Love

Every year, I fall in love with those beautiful blue hydrangeas at the front of my yard. As summer begins, I see the green shoots of hydrangea elegance peaking out of last years faded stalks. We just have this summer to enjoy and then we will me moving on.

Can I have one order of West Coast and a side of palm trees and eucalyptus, please?

I will miss seeing those amazing floppy heads of ocean blue take on a mossy tinge of green by summers end. These brief, glorious reminders of our time here on the country road, will remind me that we must enjoy and cherish people and things while we've got them.

For Memorial Day, I remember those who have sacrificed so that I can cherish every season and fall in love every summer.

President Monson Said...

I have been thinking upon these quotes lately:

"Our realization of what is most important in life goes hand in hand with gratitude for our blessings.
Said one well-known author: “Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend . . . when we choose not to focus on what is missing from our lives but are grateful for the abundance that’s present—love, health, family, friends, work, the joys of nature, and personal pursuits that bring us [happiness]—the wasteland of illusion falls away and we experience heaven on earth.”

-President Thomas S. Monson, Joy In The Journey, October 2008 General Conference of the Church of Jesus Christ of Latter-day Saints

"[A]re we prepared for our journey through life? The pathway can at times be difficult. Chart your course, be cautious, and determine to study diligently, pray fervently, and live righteously.
Let us never despair, for the work in which we are engaged is the work of the Lord. It has been said, “The Lord shapes the back to bear the burden placed upon it.”
The strength which we earnestly seek in order to meet the challenges of a complex and changing world can be ours when, with fortitude and resolute courage, we stand and declare with Joshua, “As for me and my house, we will serve the Lord.”

-President Thomas S. Monson, Be Your Best Self, April 2009 General Conference

Esra's Story

Esra lives in New England with her mom and dad and little sister, Estelle. Before she was born, her family juggled prenatal care in Virginia and Connecticut while they managed a move with the Coast Guard. They settled into their new home with just a week to spare before she made her entrance into the world.



Her Spina Bifida was diagnosed in the womb at 19 weeks. {You can see a black line on her back in the ultrasound picture. That is the opening in her spine.} We were devastated, since it had taken us five years to get to 19 weeks gestation. But we were determined to hold on tight to all of our hope that she would be healthy. There would be more prenatal testing offered to us, but we declined it, putting our trust in God. At 32 weeks, we were told that she would not survive birth. Again, we asked for Heavenly Father's help in being prepared for all situations.



She was born four weeks early in Connecticut and she was very ill. She surprised the doctors by surviving, but was immediately put on life support as they stabilized a heart defect. In her first eight weeks of life, she had five major operations to correct her back, heart and brain. Because of the delicate sutures healing on her back, she spent her first six weeks on her stomach. The only way we cold hold her was while she laid on the isolette mattress that was ever so deftly lowered onto our laps or chest. At seven weeks old, we finally got our first good snuggle with her when she moved from the Newborn Special Care to the Pediatric ICU after her heart surgery. Things just kept getting better after that.



She currently attends the Spina Bifida and Urine & Bowel Clinics at Childrens Hospital Boston. There is a host of other doctors and therapists that we fit in when we are in Boston. As for the nitty gritty of diagnoses; she has a the most severe form of Spina Bifida. The lesion was 5 cm at its longest point in the lower thoracic/upper lumbar area of the spine.

She also has:
hydrocephalus or water on the brain corrected by a VP Shunt,
twice-corrected heart defect or coarctation of the aorta
rare genetic disorder of the 6th chromosome called "E.E. Deletion" {named after her}
the smallest traces of neurological function in hips and upper legs
sub-mucous cleft palate
speech delay
obstructive sleep apnea {tonsils and adenoids removed}
neurogenic bowel and bladder
straight cath'd 4x/day
uses the cutest purple razzleberry manual wheelchair
wears braces for the ankles and feet



Esra communicates with American Sign Language. She knows quite a few signs. In fact, she loves to watch Signing Time! and Blues Clues. And she loves to be mobile. She is the queen of wheels. Oh, she loves watching cars, trucks, buses and the like drive by our house. We call her the neighborhood greeter because she waves to all passing vehicles. As for her personal vehicles, she has outgrown her hot-pink crawler but still uses her manual wheelchair and dynamic stander with glee. She is learning how to ride a hand-powered tricycle. But the most important thing of all...She has just discovered the joy of dolls and baby sisters.

Thursday, May 21, 2009

Listen and Obey

I love listening to the radio. Talk Radio, Public Radio, Jazz and R&B on the radio. And I love all the great content that comes from Internet Radio too. My a.m. dial isn't too dependable, so I love going online for Cuban and Mariachi music. Oh, and when my Krall and Bublé cravings hit, there is a great standards station that I turn up loud.

I love listening to the Prophet. I know the direction I receive will always be for my benefit. I just wish there were more places to hear that direction. The Church of Jesus Christ of Latter-day Saints just announced an online radio station streaming directly from Salt Lake. I've enjoyed BYU radio in the past, but I'm excited for more avenues to get inspiring, directing and empowering content.

I love it when my one year old listens to me. And she is surprisingly obedient. For one minute. But after a few gentle redirections, she gets the idea and presses on to a new activity. I hope that when I need gentle redirection, the ideas and motivation I recieve from hearing the Prophets voice more often, will help me listen and obey.

Friday, May 15, 2009

Document Your Weekend


Spring is in full-bloom, the my little girls are growing and the mini-van has arrived! And to celebrate, I saw this great idea from Ali Edwards (sadly, no relation) about capturing the happenings in your life for the weekend. I'm thinking of this fun project to do with the girls and Sam. Especially since there is so much happening and the newness and fun of the van shouldn't be forgotten. Really lots of blessings to capture and remember for later.

So, here's a glimpse into our weekend from The List:

reseed bare spots in lawn
bake bread
work on Esra's Trust campaign
appointment with Realtor
tour Navy Housing
set-up schedule with housekeeper
call about swimming classes for the girls
connect with C. about Joy School
grocery shopping
transfer everything to Odyssey
authorization req for ENT, CUB Clinic and Immunology and Sleep Study all at CHB
change Estelle's diaper more frequently
get A.'s travel itinerary
consolidate Lists (there are many)
FLYLady: morning routine and evening routine list and the five most important things list
walk for 15 minutes everyday
call to schedule Elliptical machine repair