For three years, Romy's heart was doing great...in fact, we had started weaning her off her heart medication for about a year, and she no problems what so ever...
And then my hubby posted this on FB May 20th 2013...
"I am sooo very thankful for my wife Tamra Lords all the time, but especially tonight. Romy went into SVT(her heart condition) and my wife recognized it. Saved her life....don't know what I would do without my wife or my little Romy..."
This was the first time since the hospital that she had an episode. It definitely freaked us out. We were at the store when Oakley called us and said that Romy was complaining of a tummy ache when they were showering. When we got home, she seemed better, so we didn't worry about it. We were potty training her at the time, and when we put her on the potty for the last time that night, I noticed her neck. It was just flickering like crazy. I knew instantly what was happening, and remember just sitting there in shock for a couple seconds. I then quickly checked her heart which was going way too fast. I immediately took her in where they stopped and restarted her heart, and then watched her for a couple hours...but eventually sent us home.
We followed up with her cardiologist who expressed that because she is three, and is still having this, that it will not be something she grows out of. We then put her on medication again, and we were pretty confident that she would be fine, and that her episodes would stop...
But they didn't.
We were blessed that the next time it happened my step brother Peter and his family were here, and Brian and I could both be there for her.
Romy in the hospital (click here)
Romy in the hospital after converting her heart (click here)
I became more concerned. Why would she have an episode ON medication?? She's never done this before!! Her cardiologist upped her meds to the maximum for her weight. Surgery was mentioned, but discussed that right now, the risks involved outweighed the episodes. So we went on our way, this time a little more cautious. More protective...more paranoid. I want to check her all night, but know that it's not sane. I never want to leave her, and know that it's not normal. I start feeling like...well...a crazy person!!
...and then things normalize, and my heightened sense of fear eazes. My bright little crazy girl just makes those fears seem so unnecessary.
But then, her heart crashes...again...like this last week:
"Yep... Again... And what broke my heart the most was hearing her say "I scared"... How does a mother not crumble to tears... And how can I not show how scared we are? I'm just so sad that we can't seem to keep her heart from doing this... And the what ifs... What if we weren't there? What if she didn't tell us? What if this happens and we don't catch it in time? I know that we are being watched over, but it's hard knowing I'm not in charge... Sometimes... I just wanna be... Even though I know that's not in her best interest..."
Romy in the Hospital Oct 10, 2013 (click here)
The hardest part is not having control. Not being able do anything for her. She is a ticking time bomb...and we never know when...or if...it'll go off. This blessing of ours...this crazy awesome BEAUTIFUL girl...why can't I just keep her safe? Why cant I just fix her?? Why do I have to share her?? I know...these are the selfish thoughts us parents have, and to be honest...I don't have all the answers...but guess what, I know I'm given this trial to find them out. And I'm trying my hardest to trust in God...to know he has a plan, and that someday...it'll all work out...
....in the meantime, I'm okay with being human, and imperfect, and flawed. I know that I'll always do my best for her...for all of my kids. I know that my other kids suffer. They have a lot of the same fears. This last time her heart faulted we were at our friend's house...yet another blessing. The kids were up playing with friends, and when we saw Romy having a problem, we were able to rush her out immediately. I looked at my friend, and said..."Don't tell the kids". I hate that they worry. Upon returning, my friend, Tessa told us that Oakley came down and asked where we were....and before she could answer, she got a look on her face and asked "ROMY?"
It breaks my heart. Of course we just want our kids to have a happy life full of love, and no suffering...but then again...I know we don't. I know it will be good for them...
So for now, I am back to the PTSD mom, you know...the crazy obsessive one that is worried my little time bomb might go off...
But that's my job...
Cause you never know when this girl:
Will become this girl:
My Millie Bedillie
2 months ago