PTSD and Jealousy

The other day a friend and fellow heart mom posted this on her facebook page.

"CHD Awareness Week Day 2: The parents of the kids battling CHD's can suffer PTSD and other mental health issues. We are moody. We cry for reasons that most people don't understand. We are very sensitive when people mention death and when people jokingly make comments like "scared me so much I almost had a heart attack". Even though we have these struggles we are some of the strongest people you could meet as we fight hard for our kids health and battle daily with checking pulses, watching heart rates and worrying about blue spells. If you know my family you know someone with a CHD. Be aware."

Well I am 100% positive I have PTSD. I know there are other heart mommy's who do and have talked about it. I have never talked about my struggle until now. I have never been formally diagnosed, but I'm sure I have it.

For some moms it's being in the hospital. The smell. The sounds of the beeping machines. For me it's my child.

When you watch your child nearly loose his life in front of you, it changes you in ways that are impossible to describe. Watching my child lifeless while I could do NOTHING was THE most horrifying experience I have EVER been through. But what happens when my child has ALL those symptoms and they tell you it's NOT his heart. What happens when your child goes cold/clammy/sweaty, lethargic, pale (to the point of blueness), his breathing changes, headaches, tummy pains, swelling in his face after activity and they tell you it's NOT his heart? The EXACT SAME symptoms he had when we almost lost him. What do you do? What happens when THOSE SYMPTOMS are the triggers for the PTSD? Because those are MY triggers. My friends and family have watched him have the episodes. My BFF (yes 2 years ago in Target?), his speach therapist, my husband, my mother-in-law, and several others. Sometimes he gets one or two symptoms. Sometimes it doesn't seem like anything is wrong at all. Sometimes it feels as if EVERYTHING is wrong. And I can tell you it reminds me of just how in control I am not. Thankfully God is. But the PTSD has still been triggered. And the NUMEROUS emotions have already begun. I don't know how to stop them.

People have different ideas for what to do to help me. One of those is get out of the house and be around people. But when I am around people whose lives are "normal" and who have the ability to take your kids places and do things with them I get jealous. I'm not jealous of people's houses (I actually love the one God gave me). I'm not jealous of their clothes. I'm not even really jealous of their money (although I do wish we had more of it sometimes). I am jealous of their ability to get in the car and go places and not worry whether the place you are in, the event you are attending, the temperature outside, the level of energy needed for whatever activity you are doing, are going to set their child off. They don't have to worry about it. It's no biggy. You get to go and have fun. Meanwhile the awesome activity that I planned for my family, may trigger a horrible episode and I hate the thought of putting my child or myself through that. Even with Dakota's autism I know what some things are going to trigger a stemming session or an emotion outburst, etc. But with Eli I can't begin to tell you really anything.

Of course then you have the realization that if you are going to go out for a night with your husband that ultimately means you must get someone to watch the kids. The is another point of jealousy. You can't simply have the grandparents, aunt/uncle, brother, cousin, etc. watch Eli. I have a couple close friends who I KNOW will and have volunteered. But "normal" kids don't need their vital signs taken in the event even just one symptom shows up. So those few people I do know must know how to take them.

The PTSD has been on my mind a lot since that post on facebook. And at the moment I don't really know what to do with it.

Not Sure

I'm not really sure how to process today's appointment or how I'm feeling. Eli had a cardiology appointment today. I'm sure if they took my blood pressure at some of these they would be rushing me to an adult doctor and forgetting about Eli sometimes. These appointments ALWAYS rattle me. From a cardiac standpoint Eli is VERY stable which is AWESOME and I'm really very happy about. However, being stable doesn't make any of his other symptoms go away. The passing out, the headaches, the tummy aches, the legs pains, the dizziness, the cold/clammy/sweatyness, the shortness of breath, the heart "beeping" spells, the facial swelling, the brain fog and MANY other things that plague him. So while I want to be happy that his heart is so stable I still have to face these nearly every single day.

As a mom we have a natural urge to "fix" whatever is ailing our kids. We don't want to watch them suffer. When they get sick we want to make them feel better. But what happens when the doctors don't have answers? What happens when you don't know how to help them when they are screaming in pain? When it's a cold or a bug going around you get through it and thank God it's over. But there is no end to this. LOTS of his symptoms come when he is active for too long. Some of them come on suddenly when he's just sitting. This is so incredibly hard I really have no words.

I think I just needed to put it out there. I've only mentioned it to one person today. I think I need more time to process.