Grief Chronicles, Volume 6

1. Grief comes in waves.

There are sometimes when I feel ok, and there are times when I really don’t feel ok. There is no telling when it will come and hit me with another round of it, it just happens. Most of the time, it is because I have been hit with a memory, or thought about what my future would have looked like with Noah here. Something always triggers it. I spent nine months being pregnant, and was a mom for four days, and throughout that time, there were songs I listened to, objects that held significance that I came across, people I talked to, daily/weekly/monthly rituals we hardly pay attention to, but do regularly nonetheless. I come into contact with one of these things from that period in my life that just ended, and a wave of grief hits me.

Today I was sitting in church, my first Sunday back after my life was turned upside down with both the birth and death of my son. It was the first Sunday of the month, which meant it was time to do communion. I didn’t think anything of it at first. I went up to the front to receive my bread and wine, and it hit me. The last several months I have been in church, as I walked up to the front and got my bread and wine, the attendant that handed it to me would say with a big smile as he/she looked at my belly “body of Christ, broken for both of you.” This time was the first time that there was no “for both of you.” It was just “for you.” What a lonely feeling! It was so hard to sit there through the rest of the service thinking about how I was no longer two people in any sense of the word. I am just me, here alone without my son.

These are the kinds of things only I would know about, and so it can’t be avoided as easily. I think this is why grieving people end up crying in public, or getting angry for no good reason, bewildering their nearby friends and relatives. I guess patience is the name of the game. When I see Chris get hit with a round of it, I always ask “what was it for you this time?” Sometimes it is something he doesn’t want to get me upset over too, and will refuse to tell me. Other times, it is something not as painful for me, and will share it.

2. No one is quite sure what to do with me.

People’s reactions to me are varied. Some don’t know what to say to me, so they nervously talk about other stuff. Some who know me well aren’t afraid to ask questions. Some avoid me altogether. I always kind of figured that after having a baby, the circle of friends that we are around would change. We would become closer to those that understand and are comfortable with the commitment of having a child, and the ones that aren’t as comfortable with it we would end up not seeing as much as we used to. Since losing Noah, this shifting of friends (and some family) has been interesting to me. There are those that can handle the ugliness of grief and loss and those that can’t.

Perhaps it would be helpful to tell you what I would like to see when I am around. (Most people grieving may not feel this way, so please note that this only applies to me.)

* What I have been through is all I can think about. I do not mind you asking questions, no matter how personal. I am an open book (as you can see), and pretty much don’t mind talking about it.
* The one place where I draw the line is what happened the night that he died. It is and always will be the very worst moment of my life. I don’t want to re-live it.
* Say Noah’s name. He is one of the great loves of my life and the very last thing that I want is for his name to clear a room. If you feel you can, please honor him and the importance of his life to us by saying his name.
* If you are uncomfortable with this, I understand. It is not an awkward topic for me, but it may be for you for your own reasons. I get that.

This is a terrible thing, and no one knows what to say. The fact that you try to say something is just music to our ears. Thanks for trying. Those that can’t we understand, but thanks for sticking with us all the same.

3. I am unlucky

I used to be kind of a superstitious person. Ok, I used to be a very superstitious person. I don’t step on cracks in the side walk, I don’t walk under ladders (which, given all the house projects we have done in the last year, that is saying something!), I get nervous when black cats cross my path, and I avoid the number 13 like the plague. Now that this has happened, I don’t even worry about it any more. I am an unlucky person. What more unlucky thing could happen to me that would be worse than this? I am sure there is something, but as I have already said, I understand now that the worst really will happen to me. So, no point in going out of my way to worry about this stuff any more. It is a really pessimistic thing to say, but I can’t help it.

4. The “what if” game is a killer.

I think any parent that has lost a child with forever be plagued by “what if.” You beat yourself up going over and over what happened in your mind, and can get pretty caught up in daydreams of “what if.” Noah’s death does bring up issues of “is our government doing what it should in protecting families.” The state mandates that certain genetic testing be done on any baby born in the state of Colorado. Most states have something to this effect. The state of Colorado does not, however, mandate how soon the results get turned around. Noah’s test result came in the day after he died. If we had known that he had it, we would have had options. There are treatment plans. Odds are he would still be here. Colorado and Wyoming share the same $1 million piece of equipment that does the testing. That is part of the holdup. Missouri (where I lived for several years prior to moving here 4 years ago) has four of these pieces of equipment. They run 24 hours a day and the state pays for the courier service (that also runs 24 hours a day) to make sure that blood is delivered to the testing sites promptly so that results can be turned around quicker. They haven’t had a baby die of MCADD since 2005. If I were still living there, my son would still be alive. There aren’t enough bad words in the English language to explain fully how this makes me feel.

Then it hit me. If I had known this, I would have had Chris drive me at breakneck speeds out to Missouri before he was born. I would have delivered Noah in the car on the way there if I had to. I would do anything for him, especially if it would have meant that I was busy caring for my beautiful, sweet baby boy right now rather than sit here writing this sad note. The facts were that we did the best we could for him, and these were the circumstances dealt to us. It isn’t fair and if we had known better we would have done things differently, but we didn’t know. It was what it was, and there is nothing we can do to change it.

I am riddled with grief and a half-functioning brain right now, so it is hard to imagine going to the battles with legislators to change it. I do know, however, that I was given this information for a reason, and as we speak, some poor family out there in Colorado is excitedly preparing for their baby to come not knowing that it is going to die because they can’t get test results turned around in time in this state. This is unacceptable. Ugh… Is this my lot in life? Who am I to do this? How am I equipped? Do I have the stomach for it? Not today, but maybe tomorrow.