Straddling Worlds

This is an odd time in my life- I think the fog descends and leaves at its own will. At times it is like your brain defaults to life before Perry, that all this never happened. Other instances I still wake up and expect him to be there, the pack n' play simply hidden by the bed.

At times I feel happy, Emily twirls and leaps in her 'powerful' dances. Meaning returns occassionaly at work, I feel satisfaction with a class that has never been taught before. I begin to take more interest in random things, and have started reading things again that are not related to death or the bible.

In other instances, life will never be simple again. I am reminded constantly of how abnormal my loss is by facebook ecards. I listen to Sunday School lessons and wonder if people really think life is so simple. Naomi isn't a cardboard bitter woman to me. They talk judgementally about her, but I see God's grace as she holds a newborn Grandson in her arms and she regains a little of normal future that was denied to her. Maybe years of hearing about other woman's Grandchildren by the well are erased as she finally has this too. She probably wondered if she would ever have any of this normality.

In some ways I feel like I am understood more by the 60 plus crowd. There is a generation that is facing and has faced loss, where my generation is still in the midst of baby showers and kindergarten school plays, or perhaps high school kids putting in college applications. Some of the 60 plus class understands closets of clothing with the person no longer there. While for many it may be parents, some have faced the very wrong experience of seeing children taken before their time. I think there also comes a better understanding of human nature and the short fluttering brevity of human life. I think Heaven has become more meaningful to them- a place of reunion and not theory. To many of my class, I suspect Heaven is not a longing for them yet. Wonderful perhaps, but a distant concept.

And here I am, straddling the world of the young and old. I know sometimes the older woman behind me probably looks at me and thinks I know nothing of loss as I stand in line holding my young daughter's hand. The young think I am bitter perhaps because they haven't tasted the sting of death enough to realize that I'm not really angry so much as I am just changed. Life will never be the same and I am a new person, better in many ways, but at a really high cost. But more serious and not as into play anymore. Somebody's joke, I know, is another person's tragedy- sometimes my own. I see faces more, feel other's pain more. Things you can buy in stores do not bring the joy they once did.

At the same time, I know I have a lot of life before me- which is a bit of the extra cruelty of a child's death... Because most people, by the time they taste a lot of loss, are closer to reunion. I do still go to  preschool parties and stuff myself in the tiny chairs. I live in the world of alphabet magnets on my refridgerator and art made out of handprints, kids toys in the floor. I have a child who loves holidays and pours happily through decorations with me in the craft store.

And then when we are done making our selections, I travel down the road and put them up on my son's grave. I still love and think about Perry daily, I just don't tell many people these things anymore as you are supposed to be over things. You get tired of being judged.

If you don't believe that people think a child's loss should largely over in a few months, you have only to tune into Ricky Lake where parents five months out are portrayed as frozen in grief. These are very normal parents actually, and I am saddened that instead of receiving the support of others they are receiving the judgement of strangers. They know, as they walk off stage, that perhaps they should have just pretended, or worst yet may believe her words and feel like they are abnomalities.

The Stone Saga Continues

There is a bit of frustration that Perry's stone is still not complete. For reasons beyond our control, the angel is still not up. The artist couldn't understand the importance of the Oct 31st date (trying to get it installed before the 1 year anniversary of Perry's death). And now it is too cold for the special masonry 'glue' to set. Initially it was supposed be done while summer was still in full swing and has drug out into a year long process.

In some of this, it has been extremely aggravating for Chris. He is task oriented and it drives him nuts. At the same time, I feel like there is a boiling anger associated with the project that may be misdirected. I don't think he realizes it, but I think deep down he is angry we have to have a stone at all. He doesn't understand why my anger doesn't rise to match his at times, and it is because I think he doesn't always understand the true root of his own. He is upset because his son should be here.

I don't know it is what I envisioned, but at the same time it is much more than a flat stone. I am happy and yet unsatisfied with it all at once. Because I believe that deep down, nothing is good enough... nothing can fully express what it is we feel for Perry. And nothing short of the grace of God that we will only experience in heaven can bring him back.

The angel is waiting in darkness in the work shop for spring to release him.

I'll show you the full project then, which has a lot more to it than a simple base.

I wonder if then we will have a sense of completeness about it, or if we will be sad because that final check mark is done.

Progress

Yes I hate small talk. How many kids (finally got that answer down, I'm not obligated to explain which are here with me, so I leave it at two). And if I just explain names and sex most people won't go to ages.

Thus large social functions are minefields at times for me.

Last year I felt knocked down when a Mom was grouching about her new baby and lugging everything around.

Fast forward to this year, same location, same Mom. "I hate when my 18 month old son cries all the time...".

18months. Perry's age, the one he grows to sometimes in my mind and I see him sitting with his siter in the floor playing with little people together. He'd be this exact age now, just old enough to be more than just a foot connection on the floor when my daughter colors. It's part of the sad regret because even if we have another haelthy child I worry the age gap will be so big there will not be a child that can play remotely near her level. And she wants that so badly- why I wind up sitting awkwardly on the ground playing candy land.

Chris tensed. Did he hear it too?

So I asked why. She mentions she thinks her kid is autistic and she finds it frustrating because he gets mad and crys. He's not talking yet or is very far behind at the least.

I think what let me get over the comment, was the thought of that little boy being so frustrated at not being able to communicate. And Mom responding in turn with frustration. I'd cry too if I were that child! I've followed one of my online friends with a child with autism, and it isn't easy for her little guy and I imagine for her.

I remember buying videos and checking out books on sign language before Emily was even crawling. I didn't want her to be frustrated. As it turns out, Emily was an active little girl and took the track developementally that most boys do- focusing on the physical and letting the verbal stuff wait a bit. The sign language really removed most of her communication frustration and it seemed to help her learn language better. When the word was paired with the symbol, she got reinforcement and when I couldn't understand her words exactly, they were made more clear by her motions. My husband jokes that sometimes Emily speaks in Swahili and I am the only one who understands it- that is primarily because I could also learn to pair the words that she uttered with her symbols.

Sign language was something I was starting to do with Perry. I always start with I love you, and I think I can remember him wiggling on his changing pad in delight and kicking his diapers on the floor in response. I have to give myself credit as a parent here, because while my first instinct was to move the diapers, he liked kicking them off so much I'd just pick them back up and set it in range of his feet again. So I can tell myself I loved him and didn't always parent out of convienence. Easiest, no. Great memories in the making- sometimes.

To this day, I'll make the I love you symbol with my hands, and Emily smiles or shoots me I love you back. If she is close enough, she makes the symbol with the alternate hand and presses the three upright fingers against mine. I have vague memories of her flashing the symbol to Perry as well. We would have been great teachers together, Emily and I.

So instead of saying to be thankful or running to hide, I suggested sign language.

When a Doll is not a Doll

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.

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.

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.

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?