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.

My Village

I think a lot of people have heard the phrase "it takes a village to raise a child". I 100% agree with this. I could NOT do this without some VERY important people and I want to say THANK YOU to them. They have NO idea how much they mean to me.

First my BFF Susan. Seriously she spent 4 days AND nights in the hospital with me when I had my daughter. She has gotten up at "O too early" to go to cath procedures, surgeries, doctors appointments and therapy appointments. She has given me my sanity back when I seriously thought it was gone for good. She listens to me for hours on end. Never judges me. Knows when to just listen and when to smack me up side the head and tell me to "mom up". She brings me back to reality when necessary and then will let me dream (for just a little bit). There are NO words or deed I could ever say or do to show her how much she means to me. I just hope I can be as good a friend to her when she needs it. I love you.

Second is my Uncle Tim. He has put up with a LOT from me. He comes and watches my children and helps us out during Eli's surgeries and hospital stays, helps attempt to keep me sane while we wait for his surgeries, he comes and helps us when my husband does projects, and the list goes on and on and on and on and on (you get the point). He will be there for me when I say "see you later" to my parents on their last day. Seriously I could NEVER do without my dear uncle. Again no words could ever really express how much he means to me and I could never repay what he has done for us. I love you.

Third is my dear friend A (she prefers her name not be used). Whenever I need to vent or talk about Eli for HOURS ON END she is there WITHOUT judgement. Whatever comes out of my mouth she doesn't judge me. She just prays and gives it to God and lets HIM work on me. She gives me advice that only the mom of a special needs kid can do. She is THE most talented "crafty" person I know. She goes WAY ABOVE and beyond helping create a project or things my kids might need for their special needs. Once again there are no words to describe the gratefulness for her unending support. I love you.

And last (but not least) my dear friends Heather and Paul. They are a newly aquired couple in my "village". Since a great deal of time (physical, mental, emotional, etc.) is spent dealing with Eli (and at times Dakota) my poor dear oldest (now 18 years old which I CANNOT believe) has had to "grow up" in some ways too fast. And I don't have the mental energy to help with certain things. They helped my son fill out some paperwork tonight. What seems like such a simple act to me was COMPLETELY overwhelming. They are helping steer him in the right direction. I CANNOT do this without them. They will NEVER completely understand how much this steering means to me. I will forever be grateful for what they do for Christian. And of course once again, I don't have the words to express my gratitude or the means to repay them. I love you guys.

"My village" is so important to me. I cannot do this without them. I am so grateful God gave me these very important people to help me and my children. To guide them, love them, take care of them (and me). Thank you all for being you and for being a part of "my village".

The Future

As the parent of a child with a broken heart, I often think of what the future holds for Eli. I try not to dwell on it because the world of medicine evolves each and every day. They are constantly discovering new things and coming up with new procedures. Things that were not possible 10 years ago, today are possible. But I still think about things like will Eli ever be able to live on his own? Will he be able to have a job? How will his surgeries get paid for? And then I stop and try to focus on today and what needs to be done. It just so happens yesterday morning before heading off for an appointment at Children's I was reading a post I had responded to previously. This wonderful heart mom, whose son is grown, was giving us her experiences. So as I drove to Children's yesterday I bawled ALL the way there in thought about her response. Knowing that God was using her and her son's life to reach me. And of course she had no idea. As I drove I thought about about this fact - no matter what as Eli grows he will be accountable to God. He will need to learn to love and trust the Savior and allow Him into his life to guide him. THE most important thing is just that. NOTHING more. It won't matter if he can tie his shoes, make his own breakfast, or pay a bill. Accepting Christ and living his life for Him will be it. As I drove I also thought about how I need to be helping him learn to trust and serve our loving Savior. And I thought about the things I need to change in my life. I thought about some of the excuses I've made/make for things and the things that get to me the most. Then today I woke up and a dear friend called to tell me she had a birthday present for me. So she brought it over. And it was a book that I KNOW God encouraged her to buy me. Normally she goes through a process before buying a book. But she just knew she was suppose to buy it so she didn't do any of the normal things she does. And God in His glory knew I would need that book to get over one of my excuses. Seriously He is amazing. And as I sit here and am excited to get started reading I am humbled that in all my sin and ugliness He still loves me and works on my heart. I just pray He helps me teach my son of His awesome love and mercy.

And I wanted to close with this. It is a two part video of a young man who passed on Christmas night. He lost his battle with congenital heart disease. I think he understood what was important.

Getting Behind

Yes I am way behind in blogging. I guess I should update a few things. We had an appointment with a new cardiologist at a new clinic on Monday. Both my husband and I liked him. He gave Eli the official diagnosis of Shone's Syndrome. I think it's hard to argue with the fact that the surgeon said at one point "His cardiac anatomy is consistent with Shone's Syndrome". He explained some things about blood pressure between the legs and arms that I didn't know about before and overall totally understood why Eli struggles so much in school and other areas. We really felt like we were heard. He also through out another term. Dysautonomia. I'm not sure that he diagnosed him with that or not. He just told us to not be surprised when we read that in the clinic notes. He is wanting to talk to their neurologists to get their imput and possibly to send us there first. He 100% thinks that some of Eli's issues are neurological. I think I need to sit on that for a while before asking any questions.

But really the being "behind" I'm talking about is delays in Eli's speech, development and overall learning. It's really quite obvious. He is in speech therapy (he has been for over a year now) and Developmental Preschool (his second year), where they also do speech. As I was sitting in therapy today it dawned on me that Eli doesn't use a ton of 3-4 or more syllable words. I mean he does use some, but not a lot. His therapist always gives us worksheets to do at home. And when we did his worksheets in preparation for today I realized what a struggle it was for him. I mentioned it to his therapist, but we try not to "visit" too much since Eli needs as much time as he can get. I held back in asking her about it fully. I'm not sure why. She really is wonderful and I could have but I tried to push it to the back of my mind. Then I came home and it came to the front of my mind like a smack in the face. I've tried pushing these thoughts to the back of my mind before. And then I look at Faith and realize that she will eventually pass him up. This makes it really hard to develope friends with people whose children are typical developing. They don't get this place I'm in. Some who are here can have a great attitude and go about life as if it's perfect. I'm not one of those people. It hurts so deep I cannot express with words the feelings it evokes. It really bothers me. People talk about all the things their kids are doing (and they have a right to brag) and Eli can't do some of the things children three years younger than him are doing. It really breaks my heart. It's hard for me to watch.

Parents of typical children don't really understand this place. They try to comfort me and say things to make it seem as though Eli will get better. Or things will get easier. This is why I love the few friends I do have. They don't try to get me to believe something I know will never be true. I am so thankful for that.

Anyway, I've been trying to just sit and be joyful in the things God has given me. They are perfect in His eyes and really that is all that matters. It's my flesh that's bothered. So I've been trying to ignore my flesh. Today was one of those days though that got to me. Where my flesh took hold and allowed me to be sad for all the struggles Eli will always face. I just felt I needed to let it out somewhere. So here it is.

It's Coming

The world of CHD (Congenital Heart Defect) families tend to become a close group of people. While our experiences may be different, we share a common bond among ourselves. And of course like other causes people have blogs. A few of these ladies I have followed for quite some time. They are encouraging, uplifting and tell it like it is when words fail me. Without knowing they have helped me overcome emotions and get on with the life that the our good Lord and Savior gave me. Three of these amazing ladies are fortunate enough to be giving away a CD. This is no ordinary CD though. This CD is by none other than Matt Hammitt of Sanctus Real. Matt's son Bowen was born with one of the most severe CHD's a person can be born with called Hypoplastic Left Heart Syndrome. I only learned of Matt's son earlier this year. His music has been a huge blessing to me and his newest CD is and will be no different. It is coming out next week. If you want the chance to win and hear a snippet of his amazing music go Here, Here, and/or Here.

5 Years

Five Years ago today God gave me a miracle as our lives were turned upside down. Our beautiful baby who seemed so healthy showed us his heart was broken. Eli went into cardiogenic shock (due to heart failure) and we nearly lost him. But God gave us a mircle. HE brought him back.


After his first surgery.

I was in such an ingnorance is bliss state when we first found out. I didn't know what a congenital heart defect really was. I didn't know it is THE most common birth defect, affecting 1 in every 100 babies. I thought they could just fix it like they fix a broken bone and we go home with no other issues. That was so far from the truth. Our lives are filled with doctors appointments, therapy, special education, and watching him for signs of cardiac emergencies. It's waiting for the shoe to drop and hear he will have to undergo another surgery. And with each surgery he endures knowing that he may not wake up. Or he may have to have a permanent pacemaker implanted. Or numerous other senarios.

It amazes me that when a woman is pregnant they push for all sorts of tests. All but ones that are MOST needed to detect the most common birth defect. Heart defects. In this day of modern medicine there is so much hope for these babies. Yet sadly some of these babies die UNNECESSARILY. There are life saving surgeries and procedures that can be preformed to save them, but they go home with an undected heart defect and pass away.

I am truly thankful for my amazing son. He fills our lives with such joy. Joy that is irreplaceable.