That knot

Ugh. Few people know THAT knot. The knot that the parents of Ethan Powell have in the pit of their stomachs this evening. It feels literally like your heart is in your throat and you feel like you are holding your breath but then you realize you aren't.

You sit there in that room, doctors sit there with you. You all watch the monitors because you all know that there isn't one person in that room that can save that child right now. It's up to God and that baby at this moment. You watch the numbers and they mean so much, ever drift of a blood pressure every drift of a sat number means the world to you. You watch those numbers and when they start trending quickly in the wrong direction you see the doctors tense and the nurses look at them for instructions.

The monitor constantly sings it's scary song..... ding ding ding....ding ding..... over and over and over again no matter how many times they silence it. The blinking red numbers scream at you. Nothing else in the world exists. You don't hear the sounds of others talking, you don't hear the sounds of ventilators or the hustle and bustle in the hallways. You only hear the sound of that monitor and hang on to every word that is muttered from a doctor or nurses mouth..... listening, waiting for some indication that they know what's happening, for some clue.

You want to run away and hide and you want to run to your child and scoop them up and take them away from the invisible danger in the room. You can do none of those things. Helplessness takes over and you wish you could even cry but you can't. You are so far above, or maybe below any emotion.

The staff tries to comfort and inform you. You shake your head but don't really hear what they are saying......... the dinging of the monitor is so overwhelmingly loud and fills the entire room with it's terror. You sit there, the most insignificant person in the room yet the one with so much to lose. You are frozen in your seat as people glance your way, waiting for you to crumble. Yet they don't understand that you are so far beyond that, you are on autopilot. Time slows down, seconds become hours and that god forsaken dinging won't stop. You feel your heart pound and think it might just burst at any moment........

Maybe it gets better. Maybe with enough blood, enough medications, enough equipment they finally stabalize him. You walk to his bedside and hold him as much as you can, terrified to touch him, terrified to feel. You look at his battered body and, maybe selfishly, thank God for another chance. You push the thought from your mind as to what this constant turmoil is doing to him because the alternative is too much to bear. You kiss him and dust yourself off as doctors beging to put their chairs away and filter out of the room with a sigh of relief. But the knot never goes away, it stays in it's spot in your stomach, sometimes waning for a time only to be brought back up when it all starts over again.

You never know when that monitor is going to start, and you never know if this is the time they won't get it to stop. Your life hangs in the balance almost as much as your child's does, your very sanity dependant on what the next 30 seconds will mean. This is a ride you can't get off. A scary room you can't find the exit to. The walls close in on you.

Imagine living this every day. Imagine living this every hour. The rollercoaster ride from hell. Just imagine..... and you will understand why when it's finally over the relief is as welcomed as anything. The pain is there, but at least you know that this pain will be different, in some ways easier to bear in some ways more difficult. Because the rollercoaster, the teetering between life and death is now over and the decision has been made. Once again you kiss his tiny body, afraid to touch him, and exhale slowly as the knot, for the first time in a very long time........... fades away.

For years you continue to hear the sound of that monitor in your head, it wakes you from your dreams and sometimes prevents sleep from coming altogether. But now, you get to wake from the nightmare from time to time.

Please pray for Ethan tonight. Pray for him to be healed in whichever way God has planned for him. Comfort his parents and give them the strength to hold on and if the time comes, the strength to let go.....

I failed

Monday was Alex's 2nd birthday. I failed at it. I had planned this whole thing, bringing helium balloons out to the cemetary and tying notes to the strings from the kids and Craig and I and letting them fly to heaven, much like we did at his funeral. When the day came to actually do it, however, I froze. The thought of going to the cemetary became overwhelming to me and I just couldn't make myself do it. What the hell my problem is I don't know. I haven't been there in like a year and a half........ A YEAR AND A HALF! Seriousely, what the hell is the matter with me?

The pit

The day my child died, I fell into the pit of grief. My friends watched me struggle through daily life, waiting for the person I once was to arise from the pit, not realizing "she" is gone forever.
The pit is full of darkness, heartache and despair, it paralyzes your thoughts, movements and ability to ration. The pit leaves you forever changed, unable to surface the person you once were.

Some of my pre-grief friends gather around the top of the pit, waiting for the old me to appear before their eyes, not understanding what’s taking me so long to emerge. After all, in their eyes, I've been in the pit for quite sometime. Yet in my eyes, it seems as if I fell in only yesterday.
Not all of my pre-grief friends are gathered around the top of the pit. Some are helping me with the climb out of the darkness. They climb side by side with me from time to time, but mostly they climb ahead of me, waiting patiently at each plateau. Even with these friends I sometimes wonder if they are also waiting for the pre-grief me to magically appear before their eyes.
Then there are the casual acquaintances, you know the ones who say, "Hi, how are you?" when they really don't care or really want to know. These are the people who sigh in relief, that it is my child who died and not theirs. You know...the "better them, than me" attitude.

My post-grief friends (and a rare pre-grief friend) are the ones who climb with me, side by side, inch by inch, out of the pit with me. They are able to reassure me when I need reassurance, rest when I need resting, and encourage me to move forward when I don't have the strength. They have no expectations, no memories and no recollection of how I "should" be. They want me to get better, to smile more often and find joy in life, but they also accepted the person I've become. The "person" who is emerging from the pit.

Author Unknown

Bitter old hag

As I've been sitting here for the past little bit reading some caringbridge sites of kiddos we either knew when we were in the joint, or who we have come to "know" through those we knew I have been reflecting and thinking about me, my positions on things...

I notice I've been bitter lately. Lately being the past couple years or so. Alex would be coming up on turning TWO now you know. TWO! It astonishes me that 2 whole years have nearly gone by... anyway back to my point.

I've been bitter, I've been angry, I've been downright pissed off. But you know what? Who wouldn't be? I have to talk to people, see people, and hear about people who take what they have for granted. They go about their day. They go to work and spend 2 hours a day with their families and somehow that is ok. They just don't realize how quickly EVERYTHING can be gone.

I'm simply sick and tired of people who take it all for granted. Every single morning I wake up and nearly cry because my kids are still here for one more day. Every night I go to bed begging God to give me another day. I have learned the hard way that people don't stay here forever. So many people don't think they take it for granted but they DO. You can see it in their day to day lives.

I guess I get so angry about certain issues because I know what it feels like to just wish you had that 1 more day. I wish I didn't need to sleep during those 7 weeks, I wish I didnt' leave him for a second to eat, use the bathroom, whatever. But I did. Those things I really did HAVE to do. People walk away from their kids every day for things they don't HAVE to do and I can't fathom making that choice.

People worry about such stupid shit. They worry about sports games and shopping and if their dry cleaning will be ready by 5. Why? What the hell does any of that stuff matter? It consumes people's lives and I can't figure it out. WHO THE HELL CARES?! Is your home standing? Is your heat working? Is your family safe and healthy? Then get down on your damn knees and thank the lord above.

It's just really frustrating. Yep I'm angry and bitter and all that other stuff. But I'm grateful and happy too. I don't take one minute for granted anymore. It's been said that I am a changed person since Alex died. Well of course I am! I'm a whole lot different than I use to be. I know I've become a lot less tolerant and likeable. My mission in life isn't to make everyone else happy, i'm sorry to say. It's to make my life and that of my family the most rewarding it can be.

I'm still learning. I'm learning who I was, I'm learning who I am, and I'm learning who I want to be. Forgive me if I confuse or anger you in that process but it's a ride you can't join me on. It's a ride that won't be over for a long time and maybe I'll never figure things out. You have the choice to ride it beside me or to stray away. I don't have any choice in the matter but you do, use it. Don't pretend, don't patronize, and don't make my grieving/learning/growing process about you, it's not. It's about me and it's a very difficult path to follow because there's never a straight line........ the path zig zags, loops, and sometimes just simply turns around and goes back where it came from. All I know is that for right now I am sorting things out and I am keeping those close to me as close as I can.

Life aint always beautiful

Isn't that the truth. 2 children who's websites I frequent died yesterday. They both had a brain tumor called a diffuse pontine glioma. It is inoperable and treatment is aimed at slowing it's growth. The average life expectancy is 6-12 months.

This morning Hailey and I were talking about hard subjects, as we frequently do. We talked about Alex and how he fought so hard to be here and how people aren't always perfect but sometimes the least perfect have the most to give. I wonder sometimes what the greater plan is for us all. The why's are so difficult to deal with sometimes. I don't think I will ever understand why Alex died. I don't know that any parent who loses a child ever gets that moment of clarity.

I think about all the children who are simply denied the chance. The babies who are lost to "medical termination" upon their parents finding out they have down syndrome, or some other abnormality that makes them "less than perfect" in the eyes of the world. It makes me angry. I wish I had my disabled child, I WISH I could push him in a wheelchair, I wish I could hug him, kiss him, and sing him to sleep.

I am comforted in the fact that we did everything we could. He was in an amazing hospital and every medical opportunity was available to him. We could have "let him go" as some would have. HE chose when it was time to go, I'm grateful for that.

Every one of us is less than perfect in some way. If we ought to abort a baby because it's not "normal", where is the line? Aborting one who has a cataract? who will need a brace for scoliosis? And when is the line drawn? If they are taken before birth it's ok, but when will we start moving on to sacrificing 2 year olds who contract a disease? I just don't understand how we think we have the right to decide who lives or dies. It doesn't make sense.

I was once reminded that God gives us free will, but he also gave us a brain. But did he intend us to use that brain to make decisions best left to him? Where is THAT line? You have to draw it somewhere.......... so where?

I struggle with these questions. A few days before Alex died I finally broke down completely and relinquished control to the lord. Right there in front of the dormatories of the University, in front of the busy hospital. I'm sure I looked like a lunatic but the weeks of what felt like running through water finally caught up with me and I had nothing left to give, I had no fight left in me. I told God he wins, I give him control. It was then that the put my son out of his misery. I never gave up on Alex but I gave up my selfish fight for him with God.

Some people don't understand the decisions C and I make regarding our family. It's difficult sometimes because it would be senseless for us to learn the lesson we did, to give up control, and then try to take it back now. But what does God intend for us to have control of, and what does he solely take control over? I just don't know.

To some people it's all so simple. It's just not for us. I don't think things will ever be simple again. Things use to be so simple even though we didn't realize it, now the seemingly smallest things just aren't anymore.

It's exhausting sometimes. This post probably makes no sense either hehe, it's one of those that I'm just typing as I'm thinking so I apologize for that. It's one of those more for me than you kinda posts.

Post traumatic stress

Why do some kids get thier miracles and some don't? I don't know that I will ever understand that. I find myself envious of people who get it. It's very strange to read the story of a kid who made it back from deaths door and have this strangely sad feeling. Most people read stories like that and feel better about life, I do not.

I've been trying to get myself back in my "happy place". I tried to find a counselor to talk to and none are taking new patients that my insurance covers...... it figures.

Many people don't really know this about me but I've had Obsessive Compulsive Disorder since childhood. (I know, if you've seen my disaster of a house you are really surprised huh?) And it's really flared up again. I almost don't even notice it until I'll be instinctively making all the vents in the car perfectly straight or something and Craig will just mess them all up and tell me it's OK if they don't all face perfectly forward...... no it's not! hehe We joke about it a lot because it's really just stupid things like that, but it's just the overwhelming need to have certain things perfect. Hard to explain.

It's not just silly things either, the obsessive thoughts are what is debilitating. The "death monster" that I spoke of before. It's like if I don't do the "rituals" then something bad is going to happen. You'd think people with OCD would live in immaculately clean surroundings. That's not really true. The silly rituals get in the way of things and some days you can spend hours just making sure every sock in the drawer is folded the right way, that the other stuff doesn't get done. So while my house may be a rat trap, there is something that is perfect....... dumb eh?

Anyway. I'm working on it. I go back and forth with it getting bad and then it becoming nearly nonexistant. Now that i've realized that's what this is I just have to recognize it and deal with it and get it to regress again.

But for now, don't mess with my vents! hehe

When reality isn't

In a wierd way, i've spent the past almost 18 months in a sort of denial. To ask me I would have vehemently swore that I was not in denial, I was coping the best way I could. But I was/am.

I don't think i've ever taken the time to totally process. When Alex was born and got sick, those weeks were such a constant roller coaster. There was never any downtime to think. I never had the chance to really say "Ok, my child was born gravely ill, this is our reality"

After he died, we threw ourselves into things, we got pregnant with Nathan, again, never taking the time to process. To really accept that our child died.

Now that things are leveling out. I find myself realizing that my child was born, he was critically ill, and he died. HE DIED! I read stories of other kids who have died and I feel such a deep sympathy for thier families, it's like I don't realize sometimes that I am one of them.

I remember the Monday before Alex died, the day when the inate "knowing" took over and without being told, I knew he was going to die. I remember making the kids lunch and crying that whole day. Hailey asked what was wrong and I just blurted out "I think Alex is going to die"..... I felt SO bad about saying that, watching the tears well up in her eyes. Yes he had taken a turn for the worse but there had never been a time when anyone said to me "you know, Alex probably isn't going to pull through". I started to question myself. Why would I say that to her?! A child!

That afternoon at the hospital I talked to the child-family life specialist and I didn't tell him that I had told Hailey that, but he said something to me that made a ton of sense. He told me that the worst thing I could do is hide from my kids. They KNOW when something is going on without being told and if you don't say anything, they get scared and upset. If you say it, then at least they know what's going on. You see, kids have a great way of making other people's problems about them. Not that they are selfish, they just always think that if an adult is upset it's somehow thier fault. So by saying what I said, Hailey knew that I was upset about Alex, and it wasn't her fault.

This grieving process. It's hard to get a handle on. There is no right or wrong way to do it and that makes it extremely difficult to know if the things I do, my coping mechanisms, are they normal or abnormal? Am I grieving in a "healthy" way, or not?

I suppose I'm greiving in my way. And that makes it the right way. I just wish someone would come along and tell me how I can put this behind me....how I can understand.

He's been on my mind a lot more than usual lately. It struck me odd the other day when I saw a kid who had a feeding tube and the mom was tending to his needs. I got sad and thought how I wish I had the opportunity. Who WISHES for a sick child? It's so strange, like I was robbed of being mom to an Alex who would have been normal and healthy, but then I was robbed of an Alex who was sick and needed such indepth care. I had prepared myself for spending the rest of my life tending to his needs with medications, doctor visits, surgeries, procedures. And I'm grieving THAT too. I guess anything you prepare for and dont' get is a loss.....