Monday, May 23, 2011

How Are You?

That is a really loaded question and one I get often. Sometimes I'm not sure if people ask because they really care or are being polite. I have my friends that ask and truly care, both because they want to know and they want to know specifically how to pray. I know the people who are asking to be polite are trying to make conversation and don't realize what they are getting into by asking that simple question. I don't blame them. I think we all do it or have done it not realizing someone is going through difficult times. But if you were to ask me that question right now I will tell you I'm NOT good. Fear has taken over and taken me to a place where I cannot function. I don't want to do anything. I don't want to go anywhere. And I don't really want to be social. I can feel myself becoming more and more isolated. People want to know what is going on and it's hard to explain sometimes. Eli has what I call "episodes". They are periods where he gets a LOT of symptoms in a short amount of time. They come on very quickly, without any warning and can last for a day (meaning 7-8 hours) or less than one hour. He typically has 1-3 "episodes" every week. We know what causes 95% of them. We never know if the next episode is going to end or end by taking his life.

I was talking to my husband about when Eli was a baby. Before we knew about his heart problem. Before they did the chest x-ray and realized what the symptoms I was describing were from. Before the doctors actually saw the symptoms come on. Then you could feel the panic of everyone around us. We weren't alone. The doctors had joined us. But we are now wondering when will they join us in having the same panic now? I don't blame the doctors. When Eli was a baby they hooked him up to the heart monitor and the pulse oximeter but it showed normal. He still had a heart problem, but the tests didn't show anything. This is VERY typical Eli. It takes specific probing before you find the answer. Usually it's a doozy of an answer. I honestly feel sorry for the doctors because attempting to find the answers is very tricky because Eli from a medical standpoint is VERY confusing and difficult to figure out. It's not just take him to the doctors and have them look here and do this test or that. So as I sit and wait for whatever is next I am slowly
quickly loosing my mind, patience, temper at pretty much any given opportunity. And strangers are just as much a target. I know that is bad. It's not showing Jesus' love. I am weak. I'm trying to lean on Jesus' and I'm failing once again. Thankfully HE loves me inspite of my weakness and failures.

Usually when someone asks this question I want to tell them the whole story. And I'm an open book so I let go. I sense sometimes the person who asked the original question is sorry they did. I can't say I blame them. Right now I'm trying to avoid the question because I'm NOT good. I cry a lot. Sometimes all day. All I can think is God's going to take my baby. I will NOT be okay. Eli would be healed and safe in Jesus' arms. I would be angry, heartbroken, bitter and I would not have Eli.


  1. Oh Angela, I can't even pretend to know what you are going through but I can imagine how scary it can be. I wish I could be there to lend a shoulder for you to vent and cry on when you needed it. I hope and pray for the best for your precious Eli.

  2. Thank you for sharing Angela, I will continue to remember you and your family in my prayers. We love you, and your precious Eli

  3. I am sorry you and your family is going through this. Very, very scary. The unknown. I will pray for Eli and you specifically this week. I understand the part about trying to trust God has 'got this' and feeling very weak. One hour at a time. That's all we can do in this life.

  4. I just saw this today. I'm sorry you have so much to bear, and I pray for you and your family often, even though we've never met.