Jo Jo woke up at about 9am, November 18, 2010, exactly one week before Thanksgiving. She laid on the floor & called for me. When I asked her what was wrong she said, “my heart usually beats like this (tapping the rhythm out for me on our dark wood floors), but now it is like this (tapping louder and faster).” “What does that mean Journey, “ I asked? “Well,” she said, “it means it is beating harder and faster than normal.” “Can you come downstairs with me,” I asked? “No. I don’t think so,” she responded. Being the middle child, she tends to be very dramatic and overly ravenous for attention. So, I carried her downstairs wondering if this was real. “Harder and faster,” I asked, as I lay her on the loveseat, intended for family gatherings and conversations? “Can you put my hand there?” She placed my hand over her heart, it was faster and thumping, like she had just been running. “Mommy,” she said, “it also hurts.”
November 19th, Journey was diagnosed with LQTS, Long QT Syndrome. That means her heart squeezes/pumps just as it should, but it does not relax exactly as it should. Her best case scenario is living with it. Her worst case scenario is sudden death. She is currently taking Beta Blockers (in my opinion, it's just to make everyone feel that they have done something to stop the "bleeding").
So, we start our Journey...
I am a firm believer that illness is a result of emotional distress. For instance, my Journey is an amazingly loving character. She is very passionate & sensitive. While we have worked hard to make certain that she has great moments, she lingers or concentrates on the more difficult moments. Moreover, she can take the best moment & turn it into a moment of difficulty & challenge. In other words, she does not "let go"/relax well.
I believe that if you add emotional distress + diet mishaps + lack of exercise you should be able to conjure up a good batch of dis-ease.
I am not an advocate for pharmaceutical drugs. That said, I do believe that they can serve as a perfect bandage (in the ambulance of life) on your way to the cure. So, it is my mission to get Journey off of the Beta Blockers and on to a cure.
My mission, is to address the whole cure:
Its been a little less than 4 weeks since Journey was diagnosed. What have we changed?
I have slowed life down & paid more attention to what my children need.
1) Journey is an artist by nature. So, there is a lot more art going on now. She listens to music as a comfort & we are enrolling her in more performing arts classes for this winter.
2) I have begun to feed the girls differently. After talking to a good friend, I think I have been under nourishing my girls & myself. So, now, I put out healthy snacks every 2-3 hours & prepare one full meal that we can enjoy together each evening. I have noted that LQTS is linked to a potassium issue (still needing clarity on this) and Journey gets frequent muscle cramps. So, even though the doctors said she has normal potassium levels, I have amped up her potassium intake.
3) Every night, the girls & I sit in a circle & we tell the Universe what we are grateful for. It has lightened Journey's daily moments of drama & disdain.
4) We have each started dream journals. While, I have no intention of losing any of my girls, I recognize that the decision is not mine. So, if that were to happen, I would not like for any of them to leave this earth not having accomplished anything that they truly wanted to accomplish. I know the power of intentions. I know what dream journals, affirmations, visualization and intention can create. So, I am starting my girls on that educational track now. If I lose a little girl, I want to know that I did my part in assisting her to create & leave her mark on this earth before departure.
5) Finally, I have come to realize that I cannot do any of these things without taking care of me. So, I have started pulling myself together as well; focusing on my health, my dreams, my personality traits & deciding what my needs are. I have begun to gather all of this and create for me too. I am standing my ground and moving forward positively.
This is our journey w/Journey. It is our journey towards The Whole Cure & we are planning to learn all the way to self-realization. I hope it helps you, I hope it touches everyone that reads it and I hope billions understand the cause & join in.
