A Heart Mom Can't Help It

This week I read a post on Funky Heart's blog.  This adult CHDr with Tricupsid Atresia (my own son's condition) inspires hope in me for a long, fulfilling future for Sam.  This past week he had a post about being himself vs being a heart patient.  He talked about how it was hard for him at times to identify as anything but a heart patient.  He talked about friends and family who would introduce him from the heart perspective before the human perspective.  He talked about watching a mom ask her son to pull up his shirt to show people the scar.  He wanted everyone to know to let your kids be a kid, and not a heart patient, as often as you can.

I appreciate his post.  Sam is still small, and I see how I could easily let this heart defect define him without realizing I was doing it.  I will certainly have to watch how I speak around him and about him as he gets older.

But at the same time, I think there is good reason why heart moms, dads, and families get in this predicament.  Two major reasons, really.  For one, pride.  I know I am so so SO proud of what my son has already survived.  I will continue to beam with pride as he grows, reaches milestones, and smash everyone's original expectations, including my own. 

But the second reason is a little more selfish.  I know that I do a lot of reaching out to others in the CHD community, trying to find hope, peace, and answers.  I know that I do a lot of 'preaching' to the non-CHD community, trying to spread awareness.  I know some of this reaching out on both ends is to remind everyone of the see-saw we sit on daily.  Sam looks so healthy.  And yet his heart is essentially dying.  From the outside, it is so easy to write off these heart kids as nothing but average children.  But they are fighting the fight of a lifetime everyday.  We, as parents, are uniquely aware of the true fragility of the life of a CHDr.  Just today I was made aware of another little heart who didn't make it through his first week of life.  Aaron had his first heart surgery at two days old.  While his parents were praying over another child with another CHD family in the CICU, their own son arrested and died.  It just makes me sick to my stomach.  My heart breaks for this family, and I feel so close to their loss even though we have not experienced the same.  It's just another reminder of a heart family's reality.

So while I will certainly make a conscious effort to let Sam define himself, rather than letting his heart define him, I will also not stop reaching out to other CHD families and to the general public.  Those involved in the CHD world need support, and those outside of the CHD world need to know the struggle our children face daily so that we can all help bring an end to CHDs entirely.

~Kathy