Thursday, August 28, 2014

The Super Sibling Celebration


The "Baltimore Area Heart Moms"  is a private support group on Facebook, founded by my friend Jessica Park, for the Baltimore heart community.  Despite the groups title, we have members from all over Maryland and it's neighboring states.  94 members strong to be exact, and counting.  Our children receive local and/or surgical cardiac services from Johns Hopkins, University of Maryland Medical Center, Children's National Medical Center, Penn State Hershey Children's Hospital, Children's Hospital of Philadelphia, and INOVA Fairfax Hospital for Children.  We throw the occasional " ♥Moms Night Out", or other similar themes, and those of us in Anne Arundel County frequently meet for weekly play dates at the park. 

Our very first dinner together.  ♥  Being a part of this community has been so profoundly rewarding for my soul.  We are a family.
One day, Jessica was driving in the car with her step-son, Gage.  Gage informed her that he wished he had a heart defect just like his brother Jeremy.  She told him, Of course you don't!  Why would you think that?  He explained that if he had a heart defect than he could have all of these parties just like Jeremy does.  This is how the Super Sibling Celebration was conceived.  Jessica wanted to create something special for all of our healthy children, so that they could be reminded just how brave they are, too. 
For a long time I have been silently dumbfounded why my daughter Sophia was happy to be diagnosed with her heart defect.  I don't particularly like to talk about it.  I just expected her to be scared, upset, angry...anything but happy.  Her diagnosis was genuine good news to her.  This story with Gage opened my eyes.  Could it be that Sophia thought having a heart defect would make her more important to us?  
Jessica had been planning this special celebration for months.  I like to think fate brought her to Captains Sharing & Caring, the Norman Creek Marina, and all of the other amazing contributors and volunteers.  With their help, the Super Sibling Celebration was able to become more special than she (or any of us) could have ever hoped for.  The children were all gifted T-shirts upon arrival.  There were games and lots of yummy food.  Every favorite treat of children (and adults if you have a sweet tooth like me!) were available.  Even Icing Smiles donated to this party!
my daughter Julia

my daughters Gina and Sophia
Cecilia and her heart friend, Addy
There was a Fire truck and Ambulance that the children could explore, and they could meet those heroes who drive the cool trucks.  No parent wants to make a desperate 911 call  for one of those trucks.  It happens in our heart community.  For some of our Super Siblings, they have known their sister/brother to leave home in one of those trucks... some of them to return home...  and some sadly did not.
Super Sibling Emoree, big sister to HLHS Angel Anya- posing with my daughter Anastasia in our exciting boat ride.
There were several boats available to take the families out on the water.  The super siblings had a chance to be the Captain of their boat.  My children are still talking about their boat rides.  We rode in a beautiful 3 story boat owned by a very sweet couple named John and Deena.  Right now my girls are playing a new imagination "boat  ride" right on our couch! 
It is so hard being the sibling of someone with medical needs, and it's very scary when those conditions are life threatening.  To my healthy children:
You are no more or less important to me than Cecilia. 
I admire YOUR strength; your bravery, forgiveness, compassion, hope, and support.
You deserved this party as a reminder of just how very special you are too. 
You've made so many sacrifices and compromises to favor the decisions that were safest for your sister.  For that Thanksgiving and Christmas I missed with you because I was living at the hospital with Cecilia.  And for every other holiday, and the non holidays I missed because EVERY day and night I get to spend with you matters to me.  For all of the days that turned into weeks that sometimes turned into months.  Where I tried my best to give you just as much attention as I gave your sister...but, let's face it.  She was very sick and I was in survival mode to do my part to keep her alive.   You still smiled even when your feelings were hurt, and you helped me with my chores without me asking you to.  For that time you tearfully confessed to me, "I didn't know if I had a Mommy anymore" upon my homecoming with Cecilia after another complicated surgery.  That one, that memory of your face and the true fear and relief you expressed, it haunts me...
You deserved this party.  I'm so grateful you enjoyed yourself and your experience.  You felt special.  You are special.  I love you.

Tuesday, August 12, 2014

The happier part

I wanted to share a lot of the pictures of our family from the summer, starting after Cecilia's early June discharge.  You know, the happier part of our life. 

Here, up first, is the official discharge selfie


our puppy, Twilight
^first cheerleading practice^
My girls are on 2 different teams.  They have practice 3x a week, but not always on the same we go cheerleading 5 nights a week.  We're all having a lot of fun with it!