Thursday, September 24, 2009

Grief Chronicles, Volume 7

1. Faith and Loss.

I have been ruminating on how to appropriately write this for weeks now. Seems like when I read someone else’s account of grief (blog, book, etc), the first thing I look for if they address this issue and how they have made sense of it in their own hearts and minds. I think this is one of the harder things to sort out. Lots of people don’t write about it because they are too hurt. But, it seems like everyone I talk to about this experiences anger at God and contemplates their faith over all. How could this happen to me? Why my child? What did I do to deserve this? It is a common thought process. I would be lying if I said my faith wasn’t shaken by this loss. I have read a lot of stuff by now, and as sad and upset as I am over the loss of Noah, I still hold my faith in God. Don’t get me wrong, I have plenty of moments when I am angry that he took my son. How is that God’s best? But, in the end I need to believe that there is a heaven. Otherwise, where is Noah? I hate the thought that this sweet, amazing person just ceased to exist and he is no longer out there anywhere. What a waste that would be! I also need to believe that there was a purpose in his death. It’s the whole “drop a rock into a pond and the ripples it creates in the water are far reaching” philosophy. I may never know or understand why my son was the one chosen for this, but I need to believe that it is because it was part of a whole chain of events that ultimately leads to good somewhere down the line. Like, if we can change some laws in this state so that others don’t have to go through what I am going through for example. Everything that happens, every decision we make has a tremendous impact on our family, friends, community, environment, etc. We are not always given the knowledge of why and how this happens because our heads would explode. God somehow keeps track of it all and makes the fabric of life weave together in some way that makes sense and benefits us all in some way or another. I think that he expects us to be angry at him when things like this happen. He is big and can take quite a lot from us. Lord knows I have called him just about every name in the book. But, because of the reasons I have just mentioned, I come back and try again. Keep going. Pray that my assumptions are correct. I need to believe that someday after a long and hopefully fulfilling life, I will be reunited with my boy and we can spend an eternity together, living out the life that we should have had here on earth.

2. I feel very self-conscious a lot.

I don’t know how or why, but at many times throughout the day, I feel very unsure of myself, and self-conscious. Over what? Sometimes it is something I said to someone, and I wonder if they took it the wrong way. Or, I look at my to do list and wonder how on earth I am going to do everything. Or, it is just for no good reason at all. I just bump along, and there it is. It is the strangest form of sadness. It takes me a second to breathe, try to relax and get sucked back into whatever was occupying my attention when it hit me. I have pretty much always been someone who possessed a strong sense of self, so this is a new one for me. I really don’t like it at all. Maybe on some subconscious level, it is a strange way of feeling out of place. Like I really should be doing something else with my life, which I really should be, but here I am trying to carry on like normal in my ordinary life pre-Noah. There is something really wrong about doing that, but I don’t have a choice.

3. Other people’s medical emergencies affect me deeply.

I get very emotional when I see an ambulance go by me, sirens on and flying down the street. I was watching the Biggest Loser on Tuesday, and one of the contestants passed out during a workout. They aired the whole dramatic scene with paramedics rapidly with panic stricken voices trying to get her to squeeze their hand and begging her to open her eyes, while she sat there fading away and pale as can be. (She ended up being fine). I am horrified, and a big part of me is taken back to the night that Noah died. For those of us that are conscious and aware of our surroundings while our loved one is going through it, it is extremely traumatic. I think you would be a pretty cold person not to be effected. It’s pretty much impossible not to be. I am more sensitive to it after having lived it. I will never be able to watch the medical mysteries shows any more (not that I could in the first place). And I usually end up having to leave the room when people start telling stories of someone else’s emergencies. It hurts too much. Ever since Chris broke his hands three years ago, I have had a kinder heart towards families that go through this sort of thing. Now after losing Noah, I can’t even come into contact with it without feeling that same panic as if I was there again that night.

4. I have lost the ability to sit quietly with myself.

Sitting quietly with myself with my own thoughts is really hard. The silence is deafening. I can’t help mulling over my life, and focusing in on the hardest parts. I easily get sad and angry. Reading a book is impossible. As hard as I try to focus on what I am reading, my thoughts eventually wander and I get sucked down into my own heart and mind. The one thing that I can do while being quiet with myself is knit. I have never done this before. Some of the ladies at my church have taught me, and I think because it is a new skill, I have to think about what I am doing, but yet it is pretty easy to do, so it doesn’t require too much of me. Because I can do this activity easily enough and it quiets the uglier parts of my life from my mind, maybe this will go away with time. I certainly hope so.

5. I think about him all the time.

He is the first thing I think about when I wake up. He is the last thing I think about when I go to bed. I dream about him. He is there in my heart and mind when I brush my teeth, eat lunch, pay bills, cook, drive, walk the dog, watch TV, surf the internet, work, clean, grocery shop, exercise, fold laundry, breathe, the list goes on. Noah is everywhere. I realize that he is not what everyone thinks about, so I do my best to try to smile, laugh, and carry on normal conversations about ordinary things. But he is all I can think about. I am a fraud. The only conversation I can authentically hold is one about Noah.

Tuesday, September 15, 2009

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.

Monday, September 07, 2009

Grief Chronicles, Volume 5

1. If I had known then what I know now…

There is so much to learn once you discover that you are pregnant for the first time. The doctors throw all these tests at you and ask you if you want them or not, and you are new at this, so what is the right thing to do? We weighed this out and had a hard time making decisions on it. Now that I have been through what I have been through, here’s my advice: if your insurance pays for it, do it. If your child has something, there may not be anything you can do about it while you are pregnant, but you can have the benefit of knowing up front and have time to go track down the best specialists on whatever your child has so that they are in place from the second your child is born. It would give he/she a fighting chance. We wished that we had had that opportunity. They don’t test for MCADD when you are pregnant (which, God willing, will change if we have anything to say about it), so there was no way we could have known. But, screenings will only get more and more broad in what they look for as time goes on, and if you can possibly avoid seeing what life is like in my shoes, trust me, do what you can to avoid this agony. We were 1 in 15,000 pregnancies. We never thought this would happen to us, but it did. As I have said before, the worst really can happen, so please go out and do the best you can for your children, and get tested for whatever screenings they have available.

2. I have a knot in my stomach when I meet new people.

Why? Because I wait for the question that inevitably comes up. “So, do you have children?” Here’s my dilemma. I love my son. I am proud of him. I do not want to hide him, or feel like I have to hide him. I carried him for 9 months. I loved him, nurtured him, and took care of him for 4 days. He existed. He mattered. I feel sick with guilt denying his existence by saying “no” to that question. It isn’t true to say that anyhow. I have been saying “I had a son, but he passed away.” Then, the person who asked gets all awkward, asks questions that I don’t want to answer, gives me a hug, tries to say something comforting, asks me how long ago this happened, and when I say “June” the awkwardness starts all over again. Sometimes, I even make the other person cry with this information. Then I cry. The whole thing is terrible to go through. I am an open person, and am not ashamed of my life or my son’s life in any way. I just don’t want to have to tell it over and over again. It hurts me to focus on the painful parts of his life, and when I am going along through my day feeling pretty good, and this happens, it sucks me back down again. I hate that. I know it is unrealistic to ask not to meet any new people for a while. I am new in my neighborhood. I am new at my church. I am going to have to work through this time and time again. Anyone who wants to get to know me and be my friend is going to have to know about this. Many times when this happens, I am in the company of a friend or family member. They tend to know the person I am telling this to, so can you help me by priming your friends before they meet me so I can avoid this whole process? Or tell them after I walk away? It would sure save me a lot of heartache. I know that this is my story and I can tell as little or as much of it as I like, but I always get caught off guard, get flustered, and then am just sick with the internal dilemma of how much do I feel like telling a perfect stranger today?

3. I am scared about forgetting him.

I have felt a growing fear that over time, I will forget all of the details of Noah’s short life. I love my son, and he will be a part of me forever. I have no doubt about that. It is just that so much happened those four days of his life. It hurts to look back and remember it all, but if I don’t do it now, time will pass and the memories will fade, and then Chris and I will be scratching our heads some day when we can look back and not have it hurt so much and wonder what happened those four days with him. For most new parents, those initial days are such a whirlwind. Those of you that have children, do you remember very much detail about what happened those first few days? They are all we have, so it is so important we do this now. So, I have spent the last couple of days making myself write the hardest story I have ever had to tell. I am his mother, and it is my responsibility of passing his story down to whomever wants to hear it. Chris and I, our family, our friends, his future siblings (God willing). It must be done. The last couple of days since I have tackled this project my heart and brain are so fried, I am hardly capable of doing anything productive afterwards. I feel satisfied that I have it down now. I am doing his baby book and am adding in pictures, while still a hard task, it is easier than the writing side of it. I love scrapbooking, and I have to say, it is so far turning out to be the most beautiful one I have ever done. It gives me pride to tell his story this way.

4. Never too late to send a note.

Some of you have sent me a card, email, or called recently now that it has been several weeks, and have apologized profusely for waiting so long. The grief process is very lengthy, and after the first initial weeks after Noah’s death, communication has kind of tapered off from everyone (which is ok - please don’t feel guilty!). It is nice to know that you guys are still thinking of us, and so it is never too late to send a note letting us know that you care. Honestly, I still have some pretty rotten days, and to open up the mail box or my email and see a kind note has helped me feel like I am not so alone in this. So, no apologies necessary from you. Thank you for thinking of us.

5. Thanks for the extra care.

I want to thank you all for the care you have put in your words to me. My favorite notes I have gotten have been from those of you who have, for example, sent me an email saying “so sorry for your loss” and other kind things. Then, 10 minutes later sent me another email saying “Please forget the part where I said xx. I didn’t mean to say that you xx. I really meant to say xx. Oh gosh, not sure what to say, except sorry!.” It reminds me why I am friends with all of you and why I love you guys so much. I am an incredibly awkward person myself, who always says the wrong things in any given situation, so I completely understand! It just shows how much thought, care and effort you are putting into your words to me. I see that you really do care, and want to say something to make me feel better. Thank you.