Friday, June 28, 2013

Back Porch Rocking

One evening early in the summer Lucia asked, “Mom, if you could have any super power what would it be?”    After some thought, I decided that I would wish for the ability to make time stand still.  The reason being, Diego is in such a good place right now both emotionally and physically.  I feel he is in the “safe zone”.  This is a place where I don’t find myself on constant alert.   Instead, it is a place where I can find great comfort and peace.  I would simply like to stay and relish in it for awhile.  It’s kind of like sitting on the back porch rocking as the world passes you by, yet you don’t really seem to care. 
Back porch rocking is one of my favorite past times that I haven’t been able to enjoy in quite some time.  I can’t seem to quiet my mind long enough to let the world pass me by.  Instead, I find myself trying to prepare for the next obstacle in the road, ready to swerve. 
Logically, I know that the next obstacle to conquer is the double switch surgery.  I believe that it is the next right step in Diego’s heart journey.  The PA band has strengthened his left ventricle which means that it should be capable of sustaining the new pressures that will be placed on it with the anatomical repair.  However, I have educated myself enough to know there are no guarantees.  To a certain degree, we are taking a leap of faith.  So for now, I’ll take Lucia’s lead and pretend that I can make this moment in our life stand still and do some back porch rocking. 

Thursday, June 20, 2013

Beads of Courage

During CHAMP Camp Diego created a Beads of Courage necklace.  This was my first time to learn about this Arts-in-Medicine program.  The idea behind the program came from one nurse that wanted to help her young patients deal with the emotional effects of serious illnesses.  The children receive colored beads that represent procedures, milestones and surgeries.  Diego was very proud of his Beads of Courage necklace.  Each bead on his necklace represents something he has had to experience along his heart journey.  This is a positive and artistic way for him to document his journey and be proud of his accomplishments.  


Saturday, June 15, 2013

CHAMP Camp

Diego’s local cardiologist arranged for Diego to attend CHAMP Camp at Sheppard’s Fold Ranch in Avant, OK.  This is a 1 week overnight camp for "Children with Heart Abnormalities with Much Potential".  Diego was given the opportunity to invite his sister to attend camp with him as well.  Together Lucia and Diego journeyed off to camp for the week of June 10, 2013.  This would be a week of fun filled activities; swimming, arts & crafts, skits, music, archery, and so much more. 

Adelina, Cesar and I were eager to pick them up from camp on the following Friday evening.  We wanted to hear all about their week.  Lucia quickly appeared full of smiles.  She was quick to say what a wonderful time she had at CHAMP camp.  Needless to say, Diego was not thrilled to see us arrive.  .  Later he explained he was sad because he didn’t want the week to end; he loved everything about camp, especially his counselor, Nathan.    

Not only did Diego get to have a fun filled week of activities, but he also had the opportunity to interact with other children that have had similar experiences with their heart conditions.  For the next several days following camp, Diego continued to share stories of the children that he met.  He talked about their heart conditions and surgeries, but most of all he talked about how much fun he had.