Yesterday was one of those days where the weight of P's first month weighs heavy on my heart. Nothing significant occured yesterday but for some reason my mind and heart went back to the hospital, the walks down the polka dot hallway and the enormousness of it all. It is difficult to shake and sets a thought process in motion that can take a few days to rid. I tend to replay certain events in my mind but most striking is the walk going in to see my son. I am not sure why that is the event that replays in my mind, of me staring down at those gigantic blue polka dots.
Over the last several months during these heavy days, I think about the term "Heart Mom" a lot. I hate labels. I hate having this label. I don't want this label and I don't want my son to have it either. And my reasons for not wanting it really has nothing to do with not embracing his once broken heart or his rocky first month. That I can handle. When I think of the term heart mom I think of all the wonderful moms who have turned their tragedy into something positive; who have paid it forward. That is the weight I am not sure I am able to bare at this time.
A couple of months ago I was introduced to a mom who recently found out her son had a CHD. We chatted on the phone and afterward I felt exhausted and realized I wasn't in the right space to offer support, that in fact I was still grieving my own situation. I felt horrible because I don't think I was a help at all and in fact may have made this mom confused or more frightened. This was never my intent when I got the courage to speak to her. However it made me doubt my ability to one day be a true "Heart Mom".
Since the time I spoke to her the dreaded label has faded and I've realized how I wear the label will be determined by me. The definition I had in my head was incorrect. Parents who have children with CHD are Heart Parents but those among us who offer support, pay it forward and strive to give a voice to this community are Heart Warriors.
I am not a Heart Warrior yet and I am not sure if I will ever be... but I am so very thankful and appreciate of those who have the ability to be one.
3 comments:
You will be a heart warrior, it just means talking about your life. It is your "new normal". It is really about making people aware that your child is extra special and has been through a lot. Even if you cannot give the support you want, you can still spread the message and be a PROUD Heart mom. I am proud of all that Miles' has already been through. He is so much stronger than most people around me. You will be a connector for new heart families to the support they need. I know that each stage of healing occurs all along the course of our childrens lives. I needed counsiling and medication d/t the post traumatic stress that I was reliving each day. It is all normal. It does get easier, even if i cried most of the afternoon since this is our diagnosis annivesary. I think my heart and my head knew it, even if I thought i was doing just fine. If you need to talk, you know you can always call.
Thanks Riann!
I know how you feel MB.. I often think back on it all as well and can't believe we made it through it... time does help and I'm sure you helped that mom you had a talk with. I wasn't sure you knew (you probably did) that there was a CHD walk in October and Children's was a big sponsor.. here are two links on it, http://www.chfohio.org/CHFOhio/Congenital_Heart_Walk.html and the main site http://www.congenitalheartwalk.org/
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