this heart broken

the story of Zoe Marie

This is the journey through our daughter’s Congenital Heart Defect and eventual heart transplant. When you “decide” to go down the transplant route as it is called there are certain things you find out after you sign on the dotted line.

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Yesterday Zoe turned 2 but her party is this Saturday.  Its hard to believe it’s been 2 years since she was born.  Sometimes I think we’re doing well with all the changes and sometimes it feels like it’s made us a bit deranged.

I think I’ve said it, I hope I’ve said it but thank you everyone for all the help given in the last two years. We’ve been the recipients of a lot of generosity in the form of money, time, meals, prayers and lots of listening ears. This website is sometimes about updating everyone and sometimes just about giving me somewhere to vent my frustrations. The last two years of my life has been one LONG lesson in learning to allow others to help me. That may not seem like such a hard thing to you well adjusted people out there but believe me, I’m not well adjusted. I just read an article on this topic by a woman who is frighteningly similar to me which helped me see the reasons why asking for help and allowing others to help me is like listening to fingernails on a chalkboard http://www.conversiondiary.com/2008/05/accepting-help.html.

First you must know that I struggle with only seeing value in myself for what I can do, how much I can accomplish, where I stand on the tally sheet of giving more than I get. All these things mesh in my head and produce that euphoric feeling of, “I matter” and “I hold value”. The question then becomes, “Do I matter if I have nothing to give”.

In most areas of my life pride just doesn’t come into play. I could care less if I own an expensive car, have the latest gadgets, if my hair is perfect, if I’ve worn make-up in the last three days, if my clothes come from Goodwill (maybe that’s more of a reflection on personal hygiene) but it rears it’s ugly head in this area. Me accept help! I can do it myself if I just work hard enough. Never mind that it may kill me to do it alone I’d rather that happen than let someone ease that burden. And then there’s always the fear that it won’t get done “right”. It’s hard to relinquish control over making sure things are done just so just to ensure that they’re done at all. Having things “just so” runs in my gene pool because my son, as I write this, is struggling because the place cards in his game are not in the same slots he left them. And I suspect those that came before me may have exhibited this gene as well (you know who you are).

Enter the last two years of my life. I’ve had to let people donate sick leave for my husband, fundraise for medical expenses, cook for me, watch my son, drive up snacks to me at a hospital 40-60 minutes away, do my yard work, grocery shopping and almost anything else you can think of. I even let one friend clean my house (something I never dreamed I’d allow). Everytime I had to accept help from people, most of whom I barely knew (remember we had just moved), it was like a little dagger to my pride and a huge tug on my arms holding tightly to the control booth. Slowly I got better at saying, “this is what I need for the week” and then not feeling quite so bad that I had burdened those around me…..yet again. It’s hard being the charity case all the time. Recently, my friend skewered what little pride I had left by fundraising on her blog to get me a laptop so I could stay connected to family and friends when my daughter winds up in the hospital. Egads!

On the other side of the issue I experienced the loss of many friendships during my pregnancy because people refused to allow me to help them in any way or burden me with the problems they have in their lives. I discovered how isolating it is to those I don’t allow to help me.; what it feels like to be shut out. When you block someone from helping you it does not allow them to enter your life and leaves them feeling alone and disconnected. True fellowship requires that intimate and messy involvement even if it means scrubbing a few toilets.


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