I'm sitting here on a Friday morning... Normally my kids are in school by now and I'm doing my thing. However, today is an I service day for all 3 kids, so they are off school. (One in elementary and 2 in middle school.) What I wouldn't give for them to be in school today. I'm so happy that they are still sleeping...
Not many people can understand what I'm feeling right now. I figured you all would probably understand that anxiety, that dreaded feeling of what are the test results going to show on Monday. Was the surgery a success. If it was a success, how do I deal with the next 6 months till the next screening/testing results? Is this truly corrected and she can go back to a normal life. A life of playing sports, running around and being a normal 9 year old child. I know that some of you have children that will never be able to play competitive sports and makes me sad and I hope it isn't upsetting to bring up that is one thing I hope my daughter can do. Since she was little she has been a fierce little player at sports. She goes and goes and makes the energizer bunny look like a whimp. She's like my oldest son whose at college.
I'm thankful she had a guardian angel looking over her and her defect was found before she was a statistic like majority of the children with her defect. How they missed it at birth makes me scratch my head. How she was cleared at the age of 2 and they missed it, makes me scratch my head. That's another thing that has me worried. Did they miss anything else? Is anything else going to come up? Could something else appear in 6 months? A year? 2, 3, 4 years?
Not ever facility she plays sports at has an AED. How can I work at making it that any sporting facility has an AED, is kept in working order and so forth? I have so many things that run through my mind, I'm lucky to be able in in my current situation as a full time stay at home mom.
What frustrates me most through all of this, the ONLY doctor that had the same thing to say each time was the surgeon. So far, each cardiologist has had a different opinion on what's in store for our daughter's future. It's been frustrating!
So, trying to hold it all together, traveling back to Baltimore this weekend and then doing the stress test and echocardiogram to see where things stand with her repaired heart on Monday... Praying all is well. That each hiccup she had after the procedure moved us closer to a repair that will last 80 plus years... But knowing each year (or every 6 months) we will have to go through another excercise stress test, cross our fingers, hope and pray and really not know what this hold the rest of her life through each scan.... I don't mean to sound ungrateful, and I hope I'm not coming across that way. I just think from a parent's standpoint... they say she's clear to resume competitive sports, and be THAT active again... what if? What if they are wrong? What happens as she grows and they don't catch it before the next scan? The only reason we found it the first time was someone watching over her, after being bit by a tick, contracting Lyme disease, and something not sitting well with me by the way she was acting, saying how she was feeling, and never dreamed what they found.. How do I go back to being a mom that is calm, cool and collective and doesn't over react act every little complaint of chest pain, neck pain, pain in her arm and so forth?
My husband just internalizies everything and trying to talk to him is pointless because even if he's scared you don't know until it's to late. It's the Marine in him. I'm the mom that normally says, you don't call to come home from school unless you have a temperature, you are bleeding, you broke something on the playground or you are throwing up..... With her, it's she has a headache? Ok well try the Tylenol and give me a call within an hour if it's not gone and I will be in to get her. I know as she gets older that will be used to her advantage..lol So how do I start to move out of that mindset now......
Our other kids have all been tested and cleared for any hear defects since her diagnosis. Otherwise I'd have been babying them too.. of what ifs.. But the surgeon suggested based on his experience, testing all the kids. I'm thankful he did that because it was reassuring. Our oldest, who if he suffered the same condition could have died by now if he would have had it. Had numerous issues getting a clear scan of his heart. They had to finally to an MRA on him to be 100% sure he was fine. Didn't help 2 weeks prior he passed out working out in the gym,w
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Teddy
Mom to 4, one of which has a repaired right coronary artery w/intramural course.
Central, PA
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