Tess’s Mindfulness Resources

This is Tess.  She is now 7 years old.  Tess is a Congenital Heart Disease Warrior, having lived through two complex open heart surgeries.  She had a major heart surgery on her 2nd birthday, and again at the age of 4 years, 2 months.  Those surgeries each came with difficult recoveries.  Tess is incredibly verbal,…

A Quieter Christmas. A Quieter World.

Last year was an emotional year for us as we figured out how to celebrate Christmas differently.  We grieved our way through.  Just a few days after Gigi nearly died after a routine surgery.  We spent almost all of January with her in the hospital recovering from a surprise heart surgery.  She is doing so…

My Turn.

I pride myself on never getting sick.  I had enough of being sick during my late teens when I spent months upon months in the hospital.  Since that time, I have promised myself that I’m not going back.  I exercise, eat right, and do the best I can to stay healthy. I blew my streak…

Give Me Your Tired…

Gigi is home and recovering beautifully. Thank you so much for asking. Her energy level improves daily. The area of her scalp that was so damaged by the multiple surgeries she had to stop the bleeding in her head is healing little by little day by day. Her courage amazes me. She came home, she…

Fly Home Buddy, I Work Alone.

We have now been inpatient with Gigi for eight days.  I haven’t really slept in a week and a half, since her initial surgery and rough recovery.  I have watched Finding Dory more times than I could have ever imagined.  It is what comforts her right now, and the girl who almost died gets whatever…

Our Own Physical Therapy

We are now one year past Tess’s big heart surgery.  So much joy in that!  She is still working hard to catch up on some of the milestones she missed because she was so sick for so long.  Tess is still behind in gross motor development.  She is 5 years old and her balance is…

The End and the Beginning.

It’s Thursday morning.  In our new world of never ending therapies and our constant quest for language, this is the morning where Joe takes Gigi to Hearing Clinic (I know, she doesn’t hear, it’s confusing, they work with her on processing language.  In her case, this means ASL).  This is the one hour I have…

Coming Up On The One.

Friday marks the one year anniversary of Tess’s second open heart surgery, a day to be celebrated for sure.  Saturday, Sofia’s 8th birthday, marks the one year anniversary of the day we almost lost her.  She has been more emotional than usual this week.  I don’t think this is related to her feelings necessarily.  I…

On The Day my Daughter Learned to Dance.

Yesterday, Gigi figured out what dancing is.  She also figured out how awesome it feels to just let go and rock out.  This is a birth rite for all kids.  At some point, they learn that dancing is something that evokes pure joy, and they do it. Gigi had never danced before.  We tried to…

What Makes You Stronger.

Last week I had the privilege of attending our local YWCA’s Circle of Women Fundraiser.  Prior to last year, I hadn’t thought too much about the YWCA and what it does for the community I live in.  I wrote a lot last spring about attending the YWCA’s racial justice courses.  I get a lot of questions…

It All Just Got Complex.

Yesterday we took Gigi to the Cardiology Clinic at our local children’s hospital for a repeat Echocardiogram.  This is basically an ultrasound of her heart.  She has had them in the past, but we needed a repeat to see whether we could get her to be more compliant with the test.  It requires a certain…

A Month of Hearts–Remembering Tess’s Heart Disease Diagnosis.

Today is the first day of the month of hearts!  It’s Valentine’s Day on February 14th, of course, but around these parts, we also celebrate February by telling the tale of our brave hearts (not just Tess and Gigi’s, but of the brave hearts of ALL our kids who love them), by talking a lot…