I appreciate all the "Happy heart day!" emails I've gotten this morning. I'm always so touched when I am reminded that people are thinking of us. So please - do not feel offended by the rest of this post!
That said, if I have to hear one more "CHD Awareness Month!" or "Happy CHD Awareness Day!" or see one more article or news segment on heart issues, I might lose my sh*t. I understand the need for it, I understand the need for the awareness, I understand how underfunded CHD research is, but really - I do not need to be reminded about CHDs every freaking time I turn around. I live it each and every day. I understand that funding research would mean that fewer kids might not have to be in Sammy's place and I understand that awareness is needed to raise those funds.
But at a time when I'm trying to live our lives and raise a toddler as a toddler and not a walking CHD, the constant reminders aren't really helping much. And Valentine's Day is becoming increasingly more difficult to simply enjoy as a day to celebrate the love in my life. And for that, I'm actually pretty damned bitter.
It is important to me that Sammy's heart condition is secondary to who he is, not the totality of who he is. When he gets older, if he wants to participate in heart awareness days, I will support him totally. And I want to do the CHB walk as a huge thank you for everything they've done for Sammy. But in the meantime, I don't want it to define him, and I feel like a lot of February is all about his heart defining him and us. I know right now it defines a huge part of me, but I try so hard to not let it define or limit him. He is simply a little boy who needs a little extra work to help him be the healthiest little boy he can be.
Selfish? Maybe. Are we so lucky that we have a toddler whose heart condition hasn't stopped him? Beyond lucky. Maybe if we were in a different place I would feel differently. I'm grateful that Sammy can provide hope for other heart families. I'm grateful that his website has given comfort to so many others. But in the end, he is a little boy, not a heart defect.
I'm tired of being slammed with CHD Awareness every time I turn around. I feel like the "odd (heart)mom out" because I don't pounce on every opportunity to share statistics and facts and get all amped up about declaring February 14th as CHD Awareness Day. Yes, there's a need for it, but I just can't embrace that role. Part of me feels as though it's being forced on us and expected of us simply because Sammy has HLHS, and really? I just want to go back to flowers and chocolates.
Even though it brings us closer to Sammy's next surgery, I will be so glad when this month is over.
My name is erika-renee, but call me eka - pronounced "eh-ka." I'm suddenly somehow 32, though I still love pigtails and overalls and silly, happy things. I live north of Boston, and I'm happily married to 
I'm a mama!
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