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.....

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.

I don't understand

It's not often something can send me back to that place. The sobbing mess on the floor place. It happened this morning.

The little girl, Ashley that I talked about in my last entry has gone to heaven. It hit me hard this morning and I spent a bit ranting at God and everybody else. The WHY factor you know. I hope that someday when I get to heaven I will have the priveledge of understanding because I just don't. I try to see the silver lining but it's hard when these kids fight and fight and fight so hard only to die anyway. It doesn't make any sense! Craig said something about lessons to be learned, and I beleive that. But who's lessons are they to learn? The parents? well how fair is it to put a child through that for someone else's education? Is it the child that is learning? Why does it have to be learned THAT way.

It will never make sense to me, it's probably not suppose to but I'm a question and answer kinda gal, and I want answers!

Dads hurt too

Once again I need to ask for your prayers. This time for a little sweet girl named Ashley who also has a special heart.

Ashley is in the PICU and so much of what she is going through we lived through with Alex. She's in rough shape, transplant seems to be her only option but she's too sick for ECMO support until a heart becomes available. Please pray for this family that thier miracle comes in the form of healing for this sweet little girl.

Yesterday was fathers day. I can't really say how Craig did with it because for the first time in quite a few years, he worked on father's day. He was kind of distant in the morning and left for work early and I imagine he did that to stop by the cemetary before work. A lot of you get to listen to my ramblings, but don't get to know much about my dear sweet husband unless you know him personally. He's such a great husband and father and my heart hurts for him. I wish I could just take his pain away and I can't. He's doing much better that's for sure and I am confident he's on the right road to healing. I just wish he didn't have to hurt.

Why do kids have to die?

I don't really know what to write in here anymore. My thoughts and feelings seem clouded lately. Not a day goes by where I don't think of Alex and I don't expect that will ever change, nor do I want it to.

So many people take for granted. Take for granted that they will give birth to a healthy baby and take that baby home, that they will watch that child grow and learn. So many people just expect that thier child will be here tomorrow. Of course they do, they haven't seen what i've seen.

I ask you all to pray tonight. For a sweet little girl named Tiahna that is in the U of MN hospital fighting for her life from Leukemia. Such a beautiful baby. Her parents received some disheartening news today, the kind of news that really sets you back in the knowledge that your child might not live through this test. Not that I'm sure they've ever forgotten it, but sometimes you let yourself drift to the other outcome and by the grace of God you can keep yourself there in that happy place of "my child will come home". And then things change and you have to look in the face the possibility that kids DO die. They die suddenly, they die after long illnesses, they die because of mistakes, accidents, murder. Children die. Treatments sometimes can't work and we fight with God for our children until the time comes to realize that these children aren't ours to keep and it's a fight we can't win. This is a hard reality to swallow for anyone, but when you are the parent of a child who might die, the feeling is undescribable.

I'm probably not making much sense tonight and that's ok. My heart is heavy tonight. I feel like since Alex died death follows me. Although I may not always personally know the children or thier families, children dying is everywhere I turn. Sometimes I wonder if it's me lol maybe i'm bad luck or something. I wonder why God lead me to this place I stand right now. What purpose does it serve to keep death in my sights? What do you want me to do with this wisdom and knowledge that you've given me through the life and death of my dear sweet son? I pray for direction.

Rest in Peace baby Tyler

Last night I had the honor of being in attendance as Tyler earned his wings and went to be with God and Alex. It was a very moving, spiritual experience. The 'wonder twins' are together again, for eternity.

Godspeed little Tyler, I am forever grateful for the opportunity to know you.