At some point I realized my husband and I will always be scarred human beings. In reality, I am not sure so much that this is a right description, because it implies abnormal, and yet I believe few people would escape unscathed from this. We are normal for what we have been through. That is my mantra, allows me to accept this new eality and try to process it. (Is accept the right word? I don't know. Accept has a nice implication that I wouldn't attach to it.)
Two big things for us: My husband hates dolls, especially the life size realistic ones, and I hate sleeping babies. The reasons pretty much mirror each other, I've described it earlier.
My Daughter knows how my husband feels about dolls. When he starts to shake, she hides them if she is there. Often she will remove her dolls from the living room before he gets home, she doesn't really question it. The older looking American Girl type dolls aren't so much the problem, nor are the smaller dolls that are obviously not life size. The worst is perhaps when she hides her larger doll under the covers and Dad sees a limb poking out or finds the doll while making the bed. It is one flaw in her process, but she is a good kid and is trying. I feel bad she has to do this, I suppose many would think he should get over it. But honestly, if I had found Perry with his arm sticking out from under his covers, I'd feel the same. In his own way, he is giving a lot to let her have the dolls. He hasn't been able to work through this yet.
She isn't deprived, her room isn't barren of toys. If anything we have to be careful now, because she has an incredible memory, so things rarely leave easily when they arrive. This has caused conflict before, as there was a rule set that it has to fit in a breadbox to give it to her. Hard to explain to someone that a gift given out of love can cause harm, can set off a chain reaction resulting in a another toy that she is attached to leaving.
So recently, when a doll was brought up, my husband reacted very negatively. It was one of those situations where I could see all sides: Emily would love this toy, it was being given out of love, but space was tight and the creep out factor for Chris is high. I couldn't moderate. Chris typically hides a lot of what he is feeling related to Perry's death, and I am more vocal. That means sometimes it sets me up to be viewed as overly sensitive, and I am a bit tired of it. Some of/ many of the things I voice my husband also thinks about and is upset at, but he pretends normal alot. At times it feels like he is in the same great sea, but pushes me out on a small raft by myself. He distances himself from the crazy lady a bit, even though he is just as wounded.
So I asked him later- because from what I was overhearing he was only addressing the space issue, if he had spoken bluntly about why he hated dolls I was sure maybe they'd understand a little better. There just seemed to more to his anxiety than just space or boundaries, and it was something I thought needed to be voiced.
In my mind I thought that this would make his reasoning more clear. Break the ice a bit.
In the end, he did tell, and it was pretty much brushed off. Chris seemed hurt and perplexed.
And it occurred to me. That sometimes people think they are understanding because they mourn the same child, but they didn't go through that same experience that we did. The horrible time of finding and being with your child after they are gone. They are not prettied up for viewing by the home, in some ways they look more like your child, but the horrible honesty of the situation is that you see the last expression of their life and can't pretend. The makeup isn't on and that terrible paleness screams to you that this is real and permanent. There are other things too, but that will remain locked in our own private box of terrible that I will only share occassionaly with parents that have faced the same situation.
I read an article about 'reborn dolls', dolls made to look lifelike. They creep many people out because it isn't natural for an object to look so much like a child and yet be so still. To a parent who has lost a child they look a lot like a pale reborn child. Like a large doll.
I don't know if there will be a day that Chris ever has positive feelings about what should be an ordinary toy. I don't know if he'll at least get some peace with it. I hope someday he will. For me I face sleeping children randomly and often look away, but I will be forced to face it daily if I have my own again. I don't have the luxury of aclimitization where I can say "let me see your sleeping baby for a couple minutes and then let me leave abruptly" (it's one of those things you can't explain, but people don't get because doesn't everyone want to see their beautiful peaceful child?). I've tried it a bit in passing at Emily's daycare, but I can't stand the blankets that are still in there. I want to gather them up and rip them apart in an angry release of hands and teeth. I wonder if Chris feels this way towards Emily's dolls after the creepy feeling recedes.
But perhaps someday it won't be like this.... I don't know that things will ever mean just what they are again, but maybe the shaking will be gone, or the little skip in my heart will be all that remains instead of the racing feeling in my chest.
Friday, December 21, 2012
Saturday, December 15, 2012
The English language lets me down
I hate how generic the term grief has become. People apply it to relationships, jobs, cars, even guilty remorse.... everything. This bothers me because when it is used so casually and nonspecific we believe it to be the same thing and people who have lost children now get thrown regularly into 'grief support groups' that include the divorced and people that have lost jobs. My Mom joined one of these generic groups, and while she talked about her past divorce and other issues, she told me she didn't mention Perry. I suppose because at times it feels like throwing the sacred into the mundane. That's not to say that there isn't extreme emotional distress tied to these things, but when you lose a child you learn how unimportant so much of these things really are or that while a severed relationship is painful, that as a parent you would give almost anything to have that child still alive- laughing and experiencing life somewhere even if it couldn't be with you. That is love in a higher sense, and why the mother in the Bible was willing to give the child to another woman to prevent the child from being torn in two. Looking back at 'tough times' in my life, I can see where in many cases it was as much a matter of perspective being out of wack as anything really significant. The problem with losing someone you love, especially a child, is that your perspective isn't off, you have suffered a very real and tangible loss that makes no sense and yet you have to continue living somehow. My husband told me that after losing Perry he recognizes that there are many things in his past life that he regarded as so much more but now realizes they were just stresses.
I listened to yet another counselor at a SIDS/ safe sleep conference. For the most part, she was more insightful than average except when she defined grief she included all those other things that I look at in a very different light. As a grieving parent, finding outside help is hard. I wound up ditching a couple counselors that saw everything as equal if you felt it was. Because I knew it wasn't. The teenage girl that crashes her car will go on to find a new one, not so for a parent. No other child will be the one they lost- it's dangerous and unhealthy to believe so. The one my husband and I finally stuck on was a counselor who had lost her husband at a young age. She gets it in a way that the others do not. You have to acknowledge the immensity of the loss to be able to help parents navigate the strange new wasteland and help them to keep walking and looking for that green in the distance that isn't visible. If you spout textbook stuff, they shut down and now you can't help them really- positive thinking does not bring a child back, you have to wrestle with the ugly truth before you can look beyond the loss at times. I say at times, because you can't fix it, and part of the whole journey is figuring out what this new life looks like and how to incorporate the child who no longer lives in a meaningful way into your life so that they aren't lost completely. Because you might as well kill me than take my son away and whitewash him from my life. Most parents are like this- they safeguard the child's memory even as they begin to take a more active interest in life again.
To me I think our language is very lacking. There should be a word for grief that applies to people specifically that you modify based on relationship with the person who died- the same but yet different. Then other words that express a sense of loss, something to acknowledge that you can feel emotion beyond just sad about broken relationships and other significant events. Perhaps a different word for things versus people or relationships. I like the way that if you dig into the word love by the authors of the bible there are different meanings or connotations in the original word. People wouldn't argue that a verse is about remorse versus true grief in the bible if there were obvious meanings behind the words. They would think twice between throwing someone into a generic grief group who will only be hurt by the all pain is equal theory.
But instead, looking at the new words in the dictionary they are largely about technology. People seem to think they've already got all that emotional stuff categorized pretty well.
I listened to yet another counselor at a SIDS/ safe sleep conference. For the most part, she was more insightful than average except when she defined grief she included all those other things that I look at in a very different light. As a grieving parent, finding outside help is hard. I wound up ditching a couple counselors that saw everything as equal if you felt it was. Because I knew it wasn't. The teenage girl that crashes her car will go on to find a new one, not so for a parent. No other child will be the one they lost- it's dangerous and unhealthy to believe so. The one my husband and I finally stuck on was a counselor who had lost her husband at a young age. She gets it in a way that the others do not. You have to acknowledge the immensity of the loss to be able to help parents navigate the strange new wasteland and help them to keep walking and looking for that green in the distance that isn't visible. If you spout textbook stuff, they shut down and now you can't help them really- positive thinking does not bring a child back, you have to wrestle with the ugly truth before you can look beyond the loss at times. I say at times, because you can't fix it, and part of the whole journey is figuring out what this new life looks like and how to incorporate the child who no longer lives in a meaningful way into your life so that they aren't lost completely. Because you might as well kill me than take my son away and whitewash him from my life. Most parents are like this- they safeguard the child's memory even as they begin to take a more active interest in life again.
To me I think our language is very lacking. There should be a word for grief that applies to people specifically that you modify based on relationship with the person who died- the same but yet different. Then other words that express a sense of loss, something to acknowledge that you can feel emotion beyond just sad about broken relationships and other significant events. Perhaps a different word for things versus people or relationships. I like the way that if you dig into the word love by the authors of the bible there are different meanings or connotations in the original word. People wouldn't argue that a verse is about remorse versus true grief in the bible if there were obvious meanings behind the words. They would think twice between throwing someone into a generic grief group who will only be hurt by the all pain is equal theory.
But instead, looking at the new words in the dictionary they are largely about technology. People seem to think they've already got all that emotional stuff categorized pretty well.
Friday, November 30, 2012
A small victory?
I gave the hardest presentation of my life today. I spoke on sleep related deaths and SIDS to a group of about 150 nurses and state employees. In my talk I reviewed different aspects- views of SUIDS parents (sudden unexpected infant deaths), the long term effects on families, anatomy of Perry's loss that broke it down into factors, and spoke about risk reduction of sleep related deaths. The irony is that I think most aspects were already covered by many experts.
I started my talk by explaining that in fire prevention, sometimes we presented lost lives by pairs of shoes. I explained that today I wasn't talking about a statistic, but my son, and I pulled out his small pair of shoes and put them on the podium. I set out rules- that it was ok if I cried, they weren't doing anything wrong nor was I by crying. It was ok to ask questions, I'd let them know if I was uncomfortable. I went on to say that my son has a name, his name is Perry, please refer to him as Perry.
Was it a success? Have any of my efforts been?
As I spoke, there were maybe two wigglers in the back- you know the texters who will disregard any presentation. But I noticed that 148 pairs of eyes were on me. The state medical examiner had tears in her eyes, and there were many that were visibly moved. I was blunt in portions, but I think they understood.
Afterwards, many people came up to me.
Many thanked me and called my presentation brave. I had nurses from the hospital I delivered Emily at come and explain that many things were in the works already- pulse ox screenings for newborns in January (you can thank other baby loss Moms like Cora's who have fought for this in other states) and sleep sacks at Baptist. Vanderbilt, where Perry was born, is still using blankets, but perhaps that too will someday change.
The DHS person in charge of daycares explained that they received my letter and cried when they read it. Starting in January they will require taking blankets out of daycare centers and using sleep sacks or footed PJ's instead to be more in line with the Academy of Pediatrics recommendations. After January, this means I will no longer have to walk into Emily's (and what should have been Perry's) daycare and see infants under thick loose blankets. I will not have to have this reminder if I am blesssed with another healthy child. When I help with any daycare fire inspections in TN, these children will be in a safer environment and I won't worry about these babies as much. Perhaps a parent will stop and think twice about a blanket if they note that the daycare doesn't use it- especially if the hospital they delivered at doesn't.
I feel like in a small way, we are/have encouraged a cultural change in TN.
Sometimes best practices have a habit of spreading. Perhaps one day this will be standard fare in every state.
In the audience was a pediatrician who helps revise safe sleep recommendations for the American Academy of Pediatrics. Have I deposited anything in his mind, I wonder? He thanked me, and finished by saying my presentation was very practical. In some ways our presentations were mirror images that were imperfect copies; his shaped by statistics and tables- mine by experience.
Does it make Perry's death hurt less? No, but it does take away some of that bitterness of losing your child and yet the world revolves as if they didn't exist. At times it seems our tragedy is nothing to others, pretend and it didn't happen. Pretend and it won't happen again. Because when I see babies in daycares I will know the blankets are gone because he mattered to me and somebody else thought his loss was important enough too. And they acted.
I started my talk by explaining that in fire prevention, sometimes we presented lost lives by pairs of shoes. I explained that today I wasn't talking about a statistic, but my son, and I pulled out his small pair of shoes and put them on the podium. I set out rules- that it was ok if I cried, they weren't doing anything wrong nor was I by crying. It was ok to ask questions, I'd let them know if I was uncomfortable. I went on to say that my son has a name, his name is Perry, please refer to him as Perry.
Was it a success? Have any of my efforts been?
As I spoke, there were maybe two wigglers in the back- you know the texters who will disregard any presentation. But I noticed that 148 pairs of eyes were on me. The state medical examiner had tears in her eyes, and there were many that were visibly moved. I was blunt in portions, but I think they understood.
Afterwards, many people came up to me.
Many thanked me and called my presentation brave. I had nurses from the hospital I delivered Emily at come and explain that many things were in the works already- pulse ox screenings for newborns in January (you can thank other baby loss Moms like Cora's who have fought for this in other states) and sleep sacks at Baptist. Vanderbilt, where Perry was born, is still using blankets, but perhaps that too will someday change.
The DHS person in charge of daycares explained that they received my letter and cried when they read it. Starting in January they will require taking blankets out of daycare centers and using sleep sacks or footed PJ's instead to be more in line with the Academy of Pediatrics recommendations. After January, this means I will no longer have to walk into Emily's (and what should have been Perry's) daycare and see infants under thick loose blankets. I will not have to have this reminder if I am blesssed with another healthy child. When I help with any daycare fire inspections in TN, these children will be in a safer environment and I won't worry about these babies as much. Perhaps a parent will stop and think twice about a blanket if they note that the daycare doesn't use it- especially if the hospital they delivered at doesn't.
I feel like in a small way, we are/have encouraged a cultural change in TN.
Sometimes best practices have a habit of spreading. Perhaps one day this will be standard fare in every state.
In the audience was a pediatrician who helps revise safe sleep recommendations for the American Academy of Pediatrics. Have I deposited anything in his mind, I wonder? He thanked me, and finished by saying my presentation was very practical. In some ways our presentations were mirror images that were imperfect copies; his shaped by statistics and tables- mine by experience.
Does it make Perry's death hurt less? No, but it does take away some of that bitterness of losing your child and yet the world revolves as if they didn't exist. At times it seems our tragedy is nothing to others, pretend and it didn't happen. Pretend and it won't happen again. Because when I see babies in daycares I will know the blankets are gone because he mattered to me and somebody else thought his loss was important enough too. And they acted.
Thursday, November 29, 2012
Nature of God
I have made no effort at hiding that I wonder if God hears me when I pray. I think the questions surrounding why or when God answers prayers gets to the heart of what you believe the nature of God to be.
What do you believe God to be? I think sometimes people see God as a Santa Claus without a loud red coat. You pray and like a gumball machine he spits out an answer. I don't see it that way.
I could and at times, are very bitter because I didn't get my miracle. Facebook doesn't help, as anything is often attributed to God's grace and it kind of leaves you feeling like a kid left out of an exclusive club. Church can feel a bit like that at times.
But I came to a realization a few days ago. I was reading on an infant loss support page and women began talking about paying for Christmas gifts. So many of these woman or men lost their jobs after they couldn't function normally... it turned into a discussion on donating plasma for money. My heart bleeds for these women- because losing a child is now one of the worst things in my mind in this world and yet these woman aren't receiving a free pass in life. Some don't believe anymore, washed of religion by a 'plan' that took their child, others never did, and some do. The good aren't spared, even after losing a child.
I now look at things and instead of asking, "Why me?" I am asking "Why not?".
I am starting to accept that God may not be Santa Claus, but he is a peace when it makes no sense, and the only way back to my child. If you had to choose between a God that worked like a pezz dispenser while you are alive or one that would give you eternal life but wouldn't give you the easy button on Earth, which would you choose?
What do you believe God to be? I think sometimes people see God as a Santa Claus without a loud red coat. You pray and like a gumball machine he spits out an answer. I don't see it that way.
I could and at times, are very bitter because I didn't get my miracle. Facebook doesn't help, as anything is often attributed to God's grace and it kind of leaves you feeling like a kid left out of an exclusive club. Church can feel a bit like that at times.
But I came to a realization a few days ago. I was reading on an infant loss support page and women began talking about paying for Christmas gifts. So many of these woman or men lost their jobs after they couldn't function normally... it turned into a discussion on donating plasma for money. My heart bleeds for these women- because losing a child is now one of the worst things in my mind in this world and yet these woman aren't receiving a free pass in life. Some don't believe anymore, washed of religion by a 'plan' that took their child, others never did, and some do. The good aren't spared, even after losing a child.
I now look at things and instead of asking, "Why me?" I am asking "Why not?".
I am starting to accept that God may not be Santa Claus, but he is a peace when it makes no sense, and the only way back to my child. If you had to choose between a God that worked like a pezz dispenser while you are alive or one that would give you eternal life but wouldn't give you the easy button on Earth, which would you choose?
Saturday, November 17, 2012
The Happiest Place on Earth?
The anniversary of Perry's death, both days (time change day and actual date) were brutal as to be expected. I really didn't want to celebrate it, but you can't forget. So we acknowledged it by buying a larger lantern for the hideout and burning some larger candles in it. I will save the good imagery and celebration for his birthday, the bittersweet celebration of his arrival and short time with us. I've already decided that I am going to buy a classroom kit for butterflies (ordered around Emily's birthday) and release them on his birthday.
So after this grueling week of crying on the way home and Big Sister becoming generally sadder/ demanding her brother more, we splurged.
We had been talking about Walt Disney World since before Perry died and had every intention of taking everyone that fall or following spring. But we know life, or rather death, has a way of robbing people of the should have beens, and instead we stayed home. Relatives tried to get us to go anyway (after all what better way to instantly recover than going to something you were supposed to do WITH your child, SARC). Well meaning people also suggested it when we were astounded with generosity and before realizing that other than the funeral home, plots had to be bought, a small vault with a 'lifetime' guarantee acquired, and a stone selected. We were oddly protected in that the amounts came out to just about cover everything except the stone, but the money and most importantly the will wasn't there to go.
The reality is that I am glad we waited. Nothing can make everything all right once you have lost a child and I think we needed to know that before we went. 90% of it was happiness, but the other 10% was an incredible sense of loss and incompleteness. We knew to expect it, so the shadow of the pain didn't totally eclipse the happy moments.
Before we left, Emily told me she was sad that Perry couldn't go with us. I told her that perhaps God would let Perry check in on us.
On the way there, a brief rainbow appeared. "Look, God sends a rainbow to tell you that a baby is safe with him". This moment seemed to settle the matter for her, and she continued the trip without hesitation. When it disappeared a moment later, she simply said "God has to tell other parents that their kids are ok."
I remember the first time Emily got to meet Cinderella and Aurora, a radiant smile spread across her face. It was that same rare uninhibited smile that I saw when Perry was born. I teared up- it was not fair that Emily did not smile as much as other children, that she was more aware of life and death than many adults are (Have you ever had your child ask if fish bleed when they die or where you will bury a pet that they just received and love desperately? Or have you heard a child ask how many years does Luke Katherine the Beta have before he dies? I have. She feeds this fish three pellets a day religiously, and stares lovingly into his bowl chatting with him. She shouldn't be thinking about this fish dying- in some ways I wish I would have got her a bird that had a chance of living until she left the house and life had given her other more important things in it.) or that we were without Perry now. He should have been in many of the pictures with his Sister, but he wasn't.
I saw his ghost in the face of an 18 month old child with his plaid shirt and similar dark lashes. The same shirt that is still rumpled in the sleeves from the last time Perry wore it. The same one I sit crying, trying to find his scent when little remains now beyond the smell of dust. I watched him as he stared at the moving figures on the Small Worls ride. His parents stared ahead oblivious and I wanted to tell him to stop and look at their son, how the important thing wasn't the ride.
I saw things with different eyes. The rainbow bands weren't just line skippers, perhaps that little girl's beautiful hair was a wig cleverly held down by the Mickey ears. The elderly couple with the disabled daughter that looked like they couldn't normally afford this, were they trying to capture memories while they could? I heard one family say they didn't really care about lines 'you won't see these people again anyway', and I thought "How clueless, they are missing it. They don't see the make a wish children, or the ones that you would gladly let skip ahead. They don't really see us- we are a family with a little girl to them to rush in front of, not a family that is missing a very real part of them." They are about the adrenaline rush I suppose, the momentary pleasures that fades like cotton candy into nothingness. They will miss their own families in this rush- sad, but the oblivious to others will rarely think that time is also limited for them with people they care about. Perhaps the Leukemia diagnosis isn't there yet or the car hasn't jumped the line, but we all go don't we? Perhaps their time with loved ones will never be as short as the time we were blessed with, but does it matter if you don't really value that time?
But I laughed on cheesey rides (except for the jungle cruise for some reason), ate pretzels and huge ice cream sandwiches, and most of all, I got to watch my daughter smiling with her daddy, cheeks pink with excitement from her first log ride down splash mountain. Yes, I wished I could have gone with them, but this after glow was reward enough.
I did find my new normal creeping in at times. I had to stop myself from waking every sleeping baby in a stroller or checking their pulses (parents rarely understand that I can stand children laughing, it is the sleeping that looks like death that makes me freeze inside). I found myself crying at night from the longing. The desperate need to see a child smile that wasn't there.
The days were largely Emily's, but the nights were Perry's. And only God really knows how much I miss him.
So after this grueling week of crying on the way home and Big Sister becoming generally sadder/ demanding her brother more, we splurged.
We had been talking about Walt Disney World since before Perry died and had every intention of taking everyone that fall or following spring. But we know life, or rather death, has a way of robbing people of the should have beens, and instead we stayed home. Relatives tried to get us to go anyway (after all what better way to instantly recover than going to something you were supposed to do WITH your child, SARC). Well meaning people also suggested it when we were astounded with generosity and before realizing that other than the funeral home, plots had to be bought, a small vault with a 'lifetime' guarantee acquired, and a stone selected. We were oddly protected in that the amounts came out to just about cover everything except the stone, but the money and most importantly the will wasn't there to go.
The reality is that I am glad we waited. Nothing can make everything all right once you have lost a child and I think we needed to know that before we went. 90% of it was happiness, but the other 10% was an incredible sense of loss and incompleteness. We knew to expect it, so the shadow of the pain didn't totally eclipse the happy moments.
Before we left, Emily told me she was sad that Perry couldn't go with us. I told her that perhaps God would let Perry check in on us.
On the way there, a brief rainbow appeared. "Look, God sends a rainbow to tell you that a baby is safe with him". This moment seemed to settle the matter for her, and she continued the trip without hesitation. When it disappeared a moment later, she simply said "God has to tell other parents that their kids are ok."
I remember the first time Emily got to meet Cinderella and Aurora, a radiant smile spread across her face. It was that same rare uninhibited smile that I saw when Perry was born. I teared up- it was not fair that Emily did not smile as much as other children, that she was more aware of life and death than many adults are (Have you ever had your child ask if fish bleed when they die or where you will bury a pet that they just received and love desperately? Or have you heard a child ask how many years does Luke Katherine the Beta have before he dies? I have. She feeds this fish three pellets a day religiously, and stares lovingly into his bowl chatting with him. She shouldn't be thinking about this fish dying- in some ways I wish I would have got her a bird that had a chance of living until she left the house and life had given her other more important things in it.) or that we were without Perry now. He should have been in many of the pictures with his Sister, but he wasn't.
I saw his ghost in the face of an 18 month old child with his plaid shirt and similar dark lashes. The same shirt that is still rumpled in the sleeves from the last time Perry wore it. The same one I sit crying, trying to find his scent when little remains now beyond the smell of dust. I watched him as he stared at the moving figures on the Small Worls ride. His parents stared ahead oblivious and I wanted to tell him to stop and look at their son, how the important thing wasn't the ride.
I saw things with different eyes. The rainbow bands weren't just line skippers, perhaps that little girl's beautiful hair was a wig cleverly held down by the Mickey ears. The elderly couple with the disabled daughter that looked like they couldn't normally afford this, were they trying to capture memories while they could? I heard one family say they didn't really care about lines 'you won't see these people again anyway', and I thought "How clueless, they are missing it. They don't see the make a wish children, or the ones that you would gladly let skip ahead. They don't really see us- we are a family with a little girl to them to rush in front of, not a family that is missing a very real part of them." They are about the adrenaline rush I suppose, the momentary pleasures that fades like cotton candy into nothingness. They will miss their own families in this rush- sad, but the oblivious to others will rarely think that time is also limited for them with people they care about. Perhaps the Leukemia diagnosis isn't there yet or the car hasn't jumped the line, but we all go don't we? Perhaps their time with loved ones will never be as short as the time we were blessed with, but does it matter if you don't really value that time?
But I laughed on cheesey rides (except for the jungle cruise for some reason), ate pretzels and huge ice cream sandwiches, and most of all, I got to watch my daughter smiling with her daddy, cheeks pink with excitement from her first log ride down splash mountain. Yes, I wished I could have gone with them, but this after glow was reward enough.
I did find my new normal creeping in at times. I had to stop myself from waking every sleeping baby in a stroller or checking their pulses (parents rarely understand that I can stand children laughing, it is the sleeping that looks like death that makes me freeze inside). I found myself crying at night from the longing. The desperate need to see a child smile that wasn't there.
The days were largely Emily's, but the nights were Perry's. And only God really knows how much I miss him.
Wednesday, October 24, 2012
The Bubble
I have to be honest. Much of this last year has been like living in a giant bubble that you can see through and hear a bit in, but everything is distorted. My mind feels like molasses, my memory is pretty much nonexistent some days.
I know it is par for the course. It is not unusual for women or their husband on infant loss boards or real life groups to lose jobs. Performance goes down. A month or two goes by and everything should be better, the employer thinks. Apparently it happens so much that some infant loss charities raise funds to help cover expenses when families lose jobs.
I am thankful that we are surrounded by good people that have patience. But I did get the gentle talk about details.
I didn't say anything. How can you say, "It's not that I do not want to do better or know better, it's just that ever since my baby died I have more difficulty holding on to things in my mind." So I didn't say anything. My mind combined with the experience of using a half functioning thin client, has me wondering at times if I am losing it. Did I do that or the quasi computer? You write it down on a piece of paper and lose or forget the paper. I try to use lists. It helps a little.
The good thing about being a firefighter is that at least your crew can get to the point they read you a bit. You look out for each other and there is a second set of eyes to help pick out details. Another person to say to "please remind me of this in the morning". But office work removes you from that.
One thing I really like though is my double screen. I can hide in my little spot and cry sometimes. Maybe they think I'm addicted to facebook- really sometimes I don't care. The tears come a lot when I am alone driving.
But I do a better job now hiding things I think. I can say I am ok without my tone giving me away. I tell strangers that I have two children and leave it at that without crying- they don't look too closely at eyes.
I don't always cry. I have better days. But I also have worse sometimes.
I hate fall. It reminds me that less than a year ago I was still primarily happy. I hate anything having to do with the time change, which comes up remarkedly often with fire safety as a way to remember when to change your batteries in your smoke detectors.
Who would have thought that smoke detectors and batteries could trigger memories? But they do sometimes.
I just want my old life back with all its flaws.
I know it is par for the course. It is not unusual for women or their husband on infant loss boards or real life groups to lose jobs. Performance goes down. A month or two goes by and everything should be better, the employer thinks. Apparently it happens so much that some infant loss charities raise funds to help cover expenses when families lose jobs.
I am thankful that we are surrounded by good people that have patience. But I did get the gentle talk about details.
I didn't say anything. How can you say, "It's not that I do not want to do better or know better, it's just that ever since my baby died I have more difficulty holding on to things in my mind." So I didn't say anything. My mind combined with the experience of using a half functioning thin client, has me wondering at times if I am losing it. Did I do that or the quasi computer? You write it down on a piece of paper and lose or forget the paper. I try to use lists. It helps a little.
The good thing about being a firefighter is that at least your crew can get to the point they read you a bit. You look out for each other and there is a second set of eyes to help pick out details. Another person to say to "please remind me of this in the morning". But office work removes you from that.
One thing I really like though is my double screen. I can hide in my little spot and cry sometimes. Maybe they think I'm addicted to facebook- really sometimes I don't care. The tears come a lot when I am alone driving.
But I do a better job now hiding things I think. I can say I am ok without my tone giving me away. I tell strangers that I have two children and leave it at that without crying- they don't look too closely at eyes.
I don't always cry. I have better days. But I also have worse sometimes.
I hate fall. It reminds me that less than a year ago I was still primarily happy. I hate anything having to do with the time change, which comes up remarkedly often with fire safety as a way to remember when to change your batteries in your smoke detectors.
Who would have thought that smoke detectors and batteries could trigger memories? But they do sometimes.
I just want my old life back with all its flaws.
Tuesday, October 23, 2012
Ticklish subject- "The plan".
Yes I do believe in God, although in a walk in the valley of the shadow of death you can't always see or feel him.
But there is something a lot of people say, partially I think because it gives them comfort, although it may not give comfort to another person or family in pain.
This statement goes something like "God's will, God's plan, God needed another angel". (Now on the angel part I believe angels are a seperate type of being, I think humanity is unique. You can't find people turning into angels in the bible. But I try to take angel as meaning a good spirit with God, so I am not necessarily offended and do take comfort in angels.)
I constantly find women with difficulty with this concept that struggle with their faith as a result. Some women do believe this and take comfort in it, but so many do not. And yes I think God knows what the outcomes are, just not sure that everything is a step by step plan. I don't think it is ok for one child to be lost to save others- I think every person is infinitely valuable. I do think if I can save others, it is my job, and that if it is through Perry than that is how it is. Am I interferring with the plan by supporting prevention? Early Americans believed the lightning rod did just that, but most modern churches have them in the steeple. I am not sure the plan covers every death.
This is what I wrote to one Mom who was struggling quietly. We often struggle quietly because it doesn't feel safe to struggle in our churches- which is sad.
My personal belief on God is that he did not take our babies, just accepted them with open arms. I think loss is part of a fallen world- unfortunately sometimes you are made to feel like if you don't believe in a firmly scripted plan there is something wrong with you. Or that because there is a plan, everything really is ok and you shouldn't mourn. If there is a purpose, God can let me know when I am reunited with my child, but I am not sure that it is appropriate for anyone less to tell me so (just like here, some messages need to come direct from a particular person, at a particular time/place, and another person blurting it out is not ok). I believe he can make good come from anything if you allow him to, but I think a God that lost his son surely understands the pain of loss. I kept coming back to Lazarus- Jesus wept and yet he knew the plan. It is ok for us to miss our children. I do try to make a point of thanking God each night for all of my children, Perry included- because I want to remind myself that he was/is a great blessing too, not just this pain that doesn't leave on earth.
Some people go so far as to reinterpret the scriptures that talk about grief (Blessed are those who grieve. Or the other scripture: It is better to be in a house of grieving than celebrating/ relating to finding wisdom and staying focused that we are here for a short while). One said grief isn't mourning but feeling bad for your sins... although the other scriptures in the chapter focuses on our relationships with other people. But I tell you that God understands the pain of seperation. He also understands that it imparts a longing for Heaven and a hollowness to Earth that is vital for Christians to grow. He asks us to watch over the widows and orphans, not to ignore them. It is ok to grieve. We would do better to allow other Christians to mourn openly. We would do better to allow and encourage other Christians to talk about their loved ones so that death does not steal them away again through the cruel conspiracy of silence. To allow them to heal and grow in grief in what should be the safest environment of all- surrounded by Christians. Firing a pot takes time. To drag it out early and expect it to behave like a fully fired pot is to invite disaster. Accept that God's timing is not our own- perhaps it is ok for that Mom or Dad not to be where you expect them to be. Or that widow to keep the closet full of her husband's clothing, the orphan to act out because they don't know the words yet.
The key concept for me is that God has plans to prosper and not harm us. If that means that life here is hard, but ultimately we will be reunited, I can accept that. The miracle that people should celebrate the most, isn't when someone is spared from death, the miracle we should celebrate the most is the Nativity and Jesus, and the miracle of salvation. We will all die, even the man granted 10 more years of life. When we say thanks at the table or Thanksgiving, we should start with thankfullness for salvation, not just the temporary gifts on Earth. How would the plan as presented, have given comfort to slaves? It is not the path traveled that should be comforting, but the ultimate destination.
So when you talk to a bereaved person, pray not only for words but for the wisdom to know when not to say something. Be very careful with 'the plan' as it can drive them away, or in some cases push people towards suicide that need comfort and not blueprints. They need the destination, not a description of a roadmap that may or may not be the right one.
But I do want to thank you, even if it has been the wrong words at times. Because you tried, you didn't sit back and ignore what was happening.
So how does healing come? We start by peeking out of our pain. We start simply (if we have faith) by being grateful for the person and that we will see them again.
And we will always miss them here. We will always recognize that this Earth is incomplete now.
But that's ok. We are meant to.
But there is something a lot of people say, partially I think because it gives them comfort, although it may not give comfort to another person or family in pain.
This statement goes something like "God's will, God's plan, God needed another angel". (Now on the angel part I believe angels are a seperate type of being, I think humanity is unique. You can't find people turning into angels in the bible. But I try to take angel as meaning a good spirit with God, so I am not necessarily offended and do take comfort in angels.)
I constantly find women with difficulty with this concept that struggle with their faith as a result. Some women do believe this and take comfort in it, but so many do not. And yes I think God knows what the outcomes are, just not sure that everything is a step by step plan. I don't think it is ok for one child to be lost to save others- I think every person is infinitely valuable. I do think if I can save others, it is my job, and that if it is through Perry than that is how it is. Am I interferring with the plan by supporting prevention? Early Americans believed the lightning rod did just that, but most modern churches have them in the steeple. I am not sure the plan covers every death.
This is what I wrote to one Mom who was struggling quietly. We often struggle quietly because it doesn't feel safe to struggle in our churches- which is sad.
My personal belief on God is that he did not take our babies, just accepted them with open arms. I think loss is part of a fallen world- unfortunately sometimes you are made to feel like if you don't believe in a firmly scripted plan there is something wrong with you. Or that because there is a plan, everything really is ok and you shouldn't mourn. If there is a purpose, God can let me know when I am reunited with my child, but I am not sure that it is appropriate for anyone less to tell me so (just like here, some messages need to come direct from a particular person, at a particular time/place, and another person blurting it out is not ok). I believe he can make good come from anything if you allow him to, but I think a God that lost his son surely understands the pain of loss. I kept coming back to Lazarus- Jesus wept and yet he knew the plan. It is ok for us to miss our children. I do try to make a point of thanking God each night for all of my children, Perry included- because I want to remind myself that he was/is a great blessing too, not just this pain that doesn't leave on earth.
Some people go so far as to reinterpret the scriptures that talk about grief (Blessed are those who grieve. Or the other scripture: It is better to be in a house of grieving than celebrating/ relating to finding wisdom and staying focused that we are here for a short while). One said grief isn't mourning but feeling bad for your sins... although the other scriptures in the chapter focuses on our relationships with other people. But I tell you that God understands the pain of seperation. He also understands that it imparts a longing for Heaven and a hollowness to Earth that is vital for Christians to grow. He asks us to watch over the widows and orphans, not to ignore them. It is ok to grieve. We would do better to allow other Christians to mourn openly. We would do better to allow and encourage other Christians to talk about their loved ones so that death does not steal them away again through the cruel conspiracy of silence. To allow them to heal and grow in grief in what should be the safest environment of all- surrounded by Christians. Firing a pot takes time. To drag it out early and expect it to behave like a fully fired pot is to invite disaster. Accept that God's timing is not our own- perhaps it is ok for that Mom or Dad not to be where you expect them to be. Or that widow to keep the closet full of her husband's clothing, the orphan to act out because they don't know the words yet.
The key concept for me is that God has plans to prosper and not harm us. If that means that life here is hard, but ultimately we will be reunited, I can accept that. The miracle that people should celebrate the most, isn't when someone is spared from death, the miracle we should celebrate the most is the Nativity and Jesus, and the miracle of salvation. We will all die, even the man granted 10 more years of life. When we say thanks at the table or Thanksgiving, we should start with thankfullness for salvation, not just the temporary gifts on Earth. How would the plan as presented, have given comfort to slaves? It is not the path traveled that should be comforting, but the ultimate destination.
So when you talk to a bereaved person, pray not only for words but for the wisdom to know when not to say something. Be very careful with 'the plan' as it can drive them away, or in some cases push people towards suicide that need comfort and not blueprints. They need the destination, not a description of a roadmap that may or may not be the right one.
But I do want to thank you, even if it has been the wrong words at times. Because you tried, you didn't sit back and ignore what was happening.
So how does healing come? We start by peeking out of our pain. We start simply (if we have faith) by being grateful for the person and that we will see them again.
And we will always miss them here. We will always recognize that this Earth is incomplete now.
But that's ok. We are meant to.
Subscribe to:
Posts (Atom)