Monday, November 18, 2013

A Mother's Perspective: The Other Sibling

If you follow our Facebook page, you may have seen last week that one of our Board members, Amy, had an incredible experience with her HLHSer, Bodie.  Last weekend, Bodie had the opportunity to be the honorary captain of the Cal Poly Mustangs football team in San Luis Obispo, CA. If you haven't read his story, you can find more about it in this touching article here
In addition to honoring Bodie, the Mustangs also honored Amy's older, heart healthy daughter, Sierra. We asked Amy to share a little of what led up to the decision to include Sierra in the evening. 
Last week, I chaperoned a fieldtrip with my daughter's 1st and 2nd grade class. As I listened to the peels of laughter coming from the middle row in my minivan, I tried to put my finger on what made those girls different than my sweet Sierra, sitting in the back row with one of her best friends, quietly talking and coloring. After much thought, I realized what it was. The girls in the middle row had a complete self-absorbed love of life so inherent in most 6 and 7 year olds.
Sierra, at 6 1/2 is, for the most part, happy. She is well adjusted. She loves school and has friends. She's joyful. But it's different than her peers. She doesn't have that wild-eyed innocence of youth, where the world is at your doorstep, and all opportunities abound. The innocence that allows one to forget all else and scream and shout in pure joy over the newest song or toy. 
She has an empathy not usually seen in children her age. But there is also a heaviness about her. Her teacher has noticed it. My brother-in-law commented on it when he was visiting. I suppose that innocence was lost somewhere between being a precious 3-year old with a younger brother born with 1/2 a heart and confined to the hospital for 5 months...and being a first grader whose recently post-Fontan brother's course was so complicated that she never knows at the end of the day whether mommy will really be the one to pick her up...or whether mommy and brother will be at the hospital again and someone else will be picking her up. The uncertainty of this journey is hard for me...and I've had 37 years of life lessons to help me weather this storm. She's had 6 1/2. I can't even fathom how hard this is for her. 
Parenting an HLHS child is hard. Parenting an HLHS child alongside a heart-healthy siblings is even harder. And when that HLHS child has complications, it borders on impossible. There is always such a tenuous balance to maintain, between focusing on your medically fragile child and other siblings. 
The ebb and flow of caring for an HLHS child in particular adds to the complexity, I think. There are parts in this journey where you are in nothing but survival mode. Times where it is all you can do to focus on your HLHS child and getting through the day. Those are seasons where you have no choice but to rely on family and friends to share the burden in caring for your healthy children. 
And then, for most HLHSers, there are seasons of rest. Seasons where life shifts back into a normal rhythm and your focus can be more evenly distributed. For our family, the first year was the roughest. And then we shifted into more or less normal rhythms. But the last few months have been exceptionally rough again, as we found ourselves unexpectedly thrown back into survival mode, when my son encountered complication after complication from his Fontan, including an additional open-chest surgery, low oxygen saturations, arrhythmias, a staph infection at his pacemaker site, and ultimately an interventional catheterization. 
He is much more stable now, thankfully, and our delicate balance is slowly shifting back again. We are working on healing the hurts caused to his heart-healthy sister during that time. The survival mode was necessary, but the damage it leaves cannot be ignored.
So, when Bodie was invited to be an honorary captain of the Cal Poly football team, we were honored and humbled. But, my next question was whether Sierra could also be involved somehow. It was an awkward request, but in my mind, a necessary one. Sure, she hasn't gone through the physical aspects of this journey, but her world has been every bit as rocked. Her scars may not mark her chest, but they're just as deep. 
And so we don't celebrate Bodie unless we can also celebrate Sierra's part in this journey. And sometimes that means saying no to amazing opportunities. This time, because of the generosity of some absolutely incredible people, it meant saying yes to an even better opportunity. While Bodie got to be the honorary captain, Sierra got to be an honorary cheerleader.
She got to lead the cheerleaders down the hill before the game.
She got to stunt with the cheerleaders.
 She got to hold their signs.
She was so proud. SHE was the shining star.
It was the perfect step on our path toward healing. And one we will cherish for years to come.

As difficult as it may be to ground yourself in this journey with HLHS, the majority of us recognize the impact on our heart healthy children, the siblings to our HLHSers. Our advice? Keep them at the forefront of conversations, the forefront of planning.  Make them a part of the HLHS journey. Allow them to control situations when possible, give them choices - for they've likely not been given much allowance in that regard while you're in survival mode.  Be mindful of their own unique HLHS sibling journey.  And, when possible, make today and tomorrow about them. Focus on their strengths and find moments for them to shine - because they will shine and they'll knock your socks off.