The death monster

Today I'm struggling. I'm fighting back the tears. I have sat here all day feeling like there was something I needed to do but I can't figure out what it is. Slowly it has crept up on me, the sadness.

I feel like I missed my opportunity to grieve. I shoved it all away for so long and now the people who were once there don't even know I still struggle as much as I do. I can't bring it up to Craig,. I can't make him sad.

So I deal with it alone. It isn't fair that I have to live every day in panic. Have you ever had a panic attack? Try having one for a year and a half straight and not telling anyone. I really don't know how physically I can keep going on like this, honestly. Stress isn't good for anybody and the constant unrelenting stress all day every day............ oy.

Yesterday we were at the grocery store. Nathan was in his new shopping cart cover (I've become a germ-a-phobe) andhe got tired so I laid him down it in on h is little matching pillow. Craig was pushing and I looked over from my shopping list and in my mind....... he was in a coffin.

I feel like there are these death monsters beating down the door all the time. Just waiting for a chance to come in and steal me, Craig, or one of the kids away forever. Nathan is sleeping.... is he breathing? Jacksen has a leg cramp.... is it cancer? Christian is tired today...... is he gravely ill? I have a headache...... is it a tumor? I have to go to the store, but I can't go because it's Saturday evening and there might be a drunk driver. I need a filling, the lidocaine makes my heart race..... will I have a heart attack? Craig has a cold....... is it lung cancer?

Can you imagine living life like that? That's an ALL DAY thing for me.

I'm tired. Physically tired, emotionally tired.

UPDATE a few hours later:

I think I just need to continue to use this journal sometimes just to rant and vent and cry. Then I can pick up and dust off .I have felt a lot better since I posted this entry. I am going to make an appt in the morning with a counselor. Maybe they can't help me, maybe they can't understand.... but maybe I need one place where I can just be REAL for an hour a week..

A new beginning

I stopped by to check the guestbook entries and saw Trista's entry and cried. Some days I yearn for that moment of healing........ that moment that the hole in my own heart closes just a little and then I realize that it closes a little every day. I don't have a "superman" scar that people can see, but some days the scars are covering my entire being.

I always knew that our experience was for a reason, I think that I thought that one day someone would just knock on my door and tell me what I was suppose to do with it. God and I have many conversations about that. I have trouble reading between the lines and seeing the rainbow for the clouds sometimes.

Every day that I have lived since the day Alexander was born has been a new day to do something with my life. In the past year and a half I have had to rebuild myself and I still sometimes wonder if I ever will be a complete person again. I have gained confidence, I have gained tremendous knowledge and compassion, yet I have lost such a part of me that I can't get back. I am just now realizing that maybe I don't need it back. Maybe Alex's illness and death was my rebirth. Maybe I got the opportunity to start new in life, that's a very liberating idea.

I'm different now. At first I resented the stares, the saddened looks as people glanced my way. Now in a way I cherish that. When Alex died all expectations that I put on myself of what I thought I needed to be melted away and I was given a chance to become anything I wanted to be.

I think I have come a long way in that venture. I think I'm a good person now. I didn't always feel that way. I can look at myself in the mirror and although I've aged physically this past year, I like what I see. I see a woman who has finally become something. I have finally gotten my career where I want it to be, I have finally become the mother I wanted to be.

I don't think I've dealt with it all in ways that were expected. I think you have a choice, you can lay down and die or you can realize that quite honestly the death of your child is the worst that life can do to you..... I've survived it and that means I have the strength to do anything. I refuse to lay down and let my spirit die.......

Every mother's nightmare

Every mother pushes the thought from her mind. The thought that something could happen to her child. It wakes us from our sleep, we think we would fail to survive it.

Some of us have for whatever reason have to live it. Somehow we do survive it but how much of our soul is still intact isn't always certain.

It started with the vasectomy, kind of strange isn't it? Then the reversal. Then by the grace of God the positive pregnancy test. An uneventful pregnancy, perfect in every aspect until at 36 weeks my water broke.


He was born in January 2006 at 2:32am. A petite 4 lbs 14 oz. The next 16 hours were pure exhausted bliss. Until he stopped breathing...

That night we heard the dreaded words that would change our lives. Heart defect. We traveled to one hospital to stabalize him, then another to fix him.

We lived in a Ronald Mcdonald house for over 6 weeks.
Our lives turned on it's nose. Normal became a thing of the past. Our lives were dictated by every breath of a ventilator, every blood test, every ultrasound, CT scan. They say it's a roller coaster. It is. Imagine that feeling as you are going up the track.... the anticipation. Then imagine going over the hill to the first big drop. The track could well derail and hit the ground.... or it could be fine and climb another hill only to drop again. There is no certainty. So many days and nights I would sit in his room, 3 or 4 chairs aligned in a row with doctors and me just sitting there with baited breath waiting for Alex to show us all what to do next.
Alex showed us strength far beyond anyone's comprehention. So many times he pulled through from deaths door. He taught us to live in the moment, because you never know what the next may bring.

Alex showed us patience. He endured so much to stay with us until the moment we were strong enough to live without him.

The day he died changed my already changed world. My children now knew that children die. My husband and I now completely understood the uncertainty and precariousness of life. We learned to take each day as the gift that it is and never let one day go by where you are not happy with the way you lived it. It might be your last.
The day we put his tiny body in the ground made me realize that in an instant, life is over. It's that quick. You live, you die, you are put in the ground, and people walk away. All that really matters is what you do between the day you are born and the day you die. How many lives you touch, how many lives you make better in some tiny way.


So, from that day forward, I have tried and will continue to try to make each day count. I will try to live without regret. I will try to teach others the lessons that my son taught me. I learned more in 6 weeks than I will teach in a lifetime.

That day

I always thought that today, the first anniversary of Alex's death that I'd have something extremely profound to post here. I don't. So I'd like to just remember for a moment. Remember a day that will be hard for me to remember and hard for you to read.

I knew. I knew days before. I don't know how I knew but I did. I talked to my friend Brandy on Monday about it. I kept telling myself that I was being stupid, he'd be fine.

I saw so many other babies get better. I saw their chests closed, I saw thier mothers hold them.

I felt the need for the other kids to come and see Alex. That didn't happen because they got sick. I so badly now wish they had.

That day, that phone call. Hearing those words "Alexander has taken a turn for the worse, please come" I knew then. There's something strangly frightening in those things you know without being told.

I ran. I ran through the snow until I couldn't breathe. I ran some more. I ran into the hospital and waited for an eternity for those stupid elevators. I ran through the halls....... I wanted to run the other way. I got to the unit and I took the back way to his room, subconciousely I knew if I ran past the desk someone would try to stop me. I needed to go in there, I needed to see.

I ran into the room and saw 2 of our doctors standing on either side of Craig. I'm not sure if the room was silent or if I just wasn't hearing the chaos that was going on, I don't remember hearing anything. It must have been loud though because I had to holler Craig's name 3 or 4 times before one of the doctors heard me, I was standing right next to him.

I didn't look at Alex's bed. I asked if he was coding and was told yes. I had always envisioned breaking down hearing words like that, I was running on pure adrenaline I guess because I was very matter of fact about it.

They wanted more tests. We all knew it was futile. I'm glad we did those tests though.

We go back into Alex's room. The nurse is doing chest compressions. I look down at his little body and see his chest ripped back open. I can see the metal clips holding his sternum together. The mama bear in me took over, stop hurting him! I looked at the nurses teary face and told her to stop, she looked at the dr who nodded his head and lifted her hands off his chest. I kissed Alex and told him I loved him, so did Craig. He was already gone, his soul was gone to heaven long ago. Someone turned the monitor off. That monitor had been my lifeline for so long, my information station. The only real consistant thing I had, that was probably the most real thing, seeing that monitor go black.

I sat down and she put Alex in my arms. The most primal emotions took over and I cried like I have never before in my life. I wailed, I couldn't breathe. So many thoughts filled my head and then were replaced by new and sometimes conflicting ones in seconds. I was strangely relieved. I kept saying in my head "it's over, it's finally over" and then guilt for thinking that would come. For once his peace didn't come from a medicine pump, his chest didn't forcefully move up and down in the unnatural way a ventilator breathes. He was at peace, for the first time ever.

they asked if we wanted a private room. I couldn't bear to move from HIS space. I felt like if we moved then that started the change and I wasn't ready for the change just yet. I needed to do it slowly, one step at a time.

Telling the kids was excrutiating. Watching their hearts break in two. Watching them hold his tiny body. Shaylin's words "momma he's cold" will ring in my head forever and ever.

I wanted to stay forever and hold him but I coudln't. The physical changes were setting in and I didn't want to remember him that way. I said goodbye and laid him on the bed that he had laid on for the past 6 weeks, in his little blue pajamas and hat, the only clothes he'd ever worn. I turned around and walked away. I walked away from him. I had always refused to leave the cities without him, and now I had to.

I left a peice of my soul there too.

Happy Birthday Alex

One year ago at this very time my body began the process of birthing you. As I sit here holding your brand new brother in my arms I still hold a hurt in my heart. All the hope and joy we felt one year ago still haunts me. We had no idea what a roller coaster ride we were in for and today it's all very surreal.

Thank you Alex for helping your brother into this world safely. We can see your spirit and determination in him already. Thank you for the gift that you and god gave us. A part of you lives on...

Happy birthday sweet boy. I love you and miss you to the depths of my soul.

A poem from mommy

a little something I wrote.

Sometimes........

Sometimes I am scared, scared that I will lose again, scared that my memories will slip away.

Sometimes I am angry, angry that such a beautiful person was taken too soon, angry that I didn't get to watch you grow up.

Sometimes I am grateful, grateful that we had those weeks with you, even though we couldn't hold you, you were there within our grasp showing us wonders that we had not yet been worthy to experience.

Sometimes I am sad, sad because I miss you so much my heart hurts.

Sometimes I am guilty, guilty because I might have been able to change things if I had only known

Sometimes I am happy, remembering how your strength and spirit filled the room, seeing you do it your way regardless of the "rules".

Sometimes I cry, I cry tears of sadness, I cry tears of heartbreak, and every now and then I cry tears of gratitude.

Sometimes I hope. I hope that I was a good mother to you even though the obstacles made it difficult for me to be a proper mother. I also hope that I can be half the person you were.

There are a lot of "sometimes". But there is one "always" and that is...... Always I will love you.

I know that time in heaven goes so fast, by the time you turn around to see if I am there with you, I will be. You feel no pain, you feel no fear. When I look up at the night sky and see that one brightest star, I imagine you sitting on it looking down on us and giving us your strength that we can go on without you. I may never understand, but at least I can wake up each morning knowing that nothing can ever take you from my heart.

I love you Alex, and I misse you terribly. For once in my life I'm not afraid to die, when it's my time someday I know that I will forever be with you again.

One direction or the other please

Things seem to be getting harder for me and easier at the same time. I don't know how or why. Yesterday we went to our first midwife appointment and since it was my birthday the midwife agreed to let us take a quick peek with the ultrasound machine since it's far too early to hear the heartbeat with the dopper. The machine they have in the office there is ancient, and not very good and for a while we could see the baby, but no flicker of a heartbeat. I stared at the screen, willing that little heart to show it's presence.......... and then it did! Such a relief.

So why do I feel sad? I feel sad that this isn't Alex. I feel bad that I find myself thinking that another baby couldn't possibly ever be as special as he was. I feel bad that I don't know if I can bond with this baby because I'm afraid he or she will be taken too.

I don't feel good physically. I feel weak. I feel like something is wrong inside my body and I find myself always fearing for my own life. Something IS wrong with my body...... my heart is broken and I'm not sure it will ever really heal.

Grieving my child is something I could not prepare for. Initially not even as much as now. See at first people expected me to be a basket case. Now.... it seems people expect a person to just kind of get over it in a way, move on. It's so difficult to do that. Part of me never wants to move on, to get further and further from our lives with Alex. I am losing my memories, a little at a time and sometimes it just feels like it never really happened at all. I mean in so many ways it's like this past year never happened, because our lives by all outward appearances are exactly the same as they were a year ago. 5 kids, expecting another, Craig working his tail off, me trying to keep things running smoothly and struggling with the constant changes that having children brings. The only difference really is we have pictures on the wall of a baby who we never got to know, we live day to day with loss on the inside, while being "normal" on the outside.