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?

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.

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.

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.

Randomness

I am not Catholic or Shinto. I do not pray to dead saints or relatives, but I find myself praying to God and asking him to pass along things to Perry. It is as if I am locked into this by my protestant background.

Other friends feel free to talk to loved ones. "Dad, take a ride with me," one whispers as he swings a leg over the black leather of a Harley seat. And off they ride.

I am somewhat envious.

Instead I am left praying to a God who has shown that my will does not make things happen. If I prayed on my knees for my child's safety, what hope do I have that he will pass along my love notes like some intermediary in Jr. High?

But I still pray. "Please tell Perry that I love him and miss him." My Daughter seems to accept this and it has become an extra step in her prayers, right behind the "I'm sorry for" section.

And sometimes "please tell him that I want him back."

As if he has much choice.

At times I wish I believed in reincarnation. That way there would be some chance that I could grow a new body in my belly and hold him in my arms again. But then he could also be born as the butterfles that dash into my windshield as I near his grave or the small red breasted bird I find cold and still in the driveway. Neither one of these is fine, I want him to lay in the newly mowed grass as a child and feel the blades as itches on his skin. I want him to dance across the kitchen as he blushes from his first kiss from a female who is not his mother. I want him to hold his own child. I want him to cry his own tears of loss and joy. I want him to live a long life with all the boredom, excitement, love, and heartache that real living entails.

But if he did have a choice, would he return to me? Would he visit me in my lonely moments or be drawn to the laughter of his sister as she dances with her arms wide open? Would he burrow into the safety of my womb?

I don't know. I think he loved me with all the simplicity that was Perry. With strong fists tangled in hair and smiles in the morning after his hunger was stilled.

I know I still love and miss him with a rawness that even a burn patient would be free of by now.

But some people think he should fit in some nice little box now in my mind, with tidy boundaries that do not bleed into every corner. That I should be over this fog that settles across my shoulders like a heavy velvet. I should be happy and smile for them and forget this little person that in their mind still inconviently intrudes upon them. "After all," they mutter, "it is time to move on.... "And silently 'because I am tired of it.... it does not suit me.'

They do not know me. They never knew him.

If they knew him or me they would not expect this as their due. Maybe they would cry with me. Or perhaps sometimes welcome his memory with a small smile as it flashes like sunlight through the dense trees.

He forged these brief smiles in the small time we had, with more patience as an infant than many adults. He didn't scream for no reason and learned to read my emotions with the clarity of a young baby tuned to his mother's needs. He gave without hiding his motivations. His motivations were not greedy beyond simple survival. He expected affection and love, not out of a sense of entitlement, but because he was never exposed to it's abscence.

Perry deserves my smile.

They do not.

Nightmares

This isn't an easy post to write, and I need to warn you that today will not be uplifting... just scary. So you know now, please stop reading if you can't handle it.

Everyone has started having nightmares again, and here are a few of my own.

We find this house in Brentwood, but my family that I am a part of is not my normal immediate family. They are different people and there is no Emily or Chris. It seems perfect- a decent size on about 2 or 3 acres in Brentwood. Trees surround the perimeter and the house is set in what looks like a field of tall grass. The inside is imaculate, but the yard hasn't been tended and it is part of the field.

I am walking and a large golden dog starts circling me and drawing me away from the house. The landscape gets a little darker and it is like the brief respite before a tornado.

I follow the dog and he leads me about a mile down the road. We take a right onto a gravel path that looks like it is leading into another field. I look towards the right and suddenly realize I am in a graveyard, tall while stones line the  right side of the road. The dog stops and circles in an area.

In the space of a normal plot there are five stones all close together in a neat row. The ground is not freash but it is not old either, it is slightly irregular from the flat soil around it.

As I read the names and ages, I learn that it is two parents and three children. I suddenly realize that this was the family that lived in the house.

2nd dream-

My son is dead again and I am about to go into the service. A female person who is attending the service asks me how his corpse is. I tell him rigor mortis is setting in and she nods and says 'Good'.

This time the service isn't in a church, it is in a small room- perhaps in the mortician's business. There aren't a lot of people there. Perry is in a coffin but it has a clear lid. As I stand there someone starts his Eulogy, it is impersonal and I realize someone from the funeral home is talking. I look into the coffin and Perry's body is jerking. As if he is dying again, but I know he is dead but somehow still afraid. I reach down and stroke his head while everything continues and I keep whispering it is ok for him to go.

Everyone knows what is going on but they act as if nothing is happening.

The Natural Order of Things

Sometimes as a society I think we become so 'enlightened' that we actually begin to deny basic truths. In some instances the reasons behind the denial is good intent, but the truth just sort of bubbles up.

I think one of these truths is that genetics does matter. We have hid it because we don't want people to be chained to the past and we want to accept children fully regardless of origin. Which are both wonderful concepts that should be accepted.

But the truth is that when I look at my children, I see myself and my family. My son was a little bit of everyone that I love. The literal joining of two people. I felt like not only did my son die, but a piece of myself, my husband, our parents, our grandparents died that day. It's a strange thing because in todays society you are supposed to say that all this doesn't matter.

The reality is that every person has two ways to keep living in this world once they are gone. The first is the ripple effect, and sadly some people do not produce a very big wave. It is not only the achievements but how you cared about others and made them want to be better people. I think here is where adoption and choice of bringing friends into your inner circle matters- this is part of your ripple. If you can pass good things along you still live.... but sadly some create waves of terror that echoe through generations. Sometimes perhaps a person does a little of both.

The second is through your genes. Yes I said it. But in a very real way your personality, facial features, and health/ pschological characteristics go on. I think this can be good or bad for obvious reasons, but also because of how people treat those who are or aren't related. It's become taboo to acknowledge because of rejection by others because you weren't 'their blood' or the extreme of genocide.

But it is real. Don't reject the truths that are good because of the bad.

I miss my son. Because of who he was and who was part of him. It was no mistake he was named after our two favorite men in our families, Perry (my husband's father) and my Grandfather Bryce. It is a whispered hope that this child will embody them and live out the best of both men. It is also a hope that this child would carry them forward. You want them to continue to live not only by that ripple but to hopefully see the physical part staring back at you.

And when he died we all died, even those who still breathed.

I feel like a very real part of me is buried wth my son, like part of me died before the rest of me. You can't see the missing limb (genetic) or the hole in my soul (ripple), but it is there. I feel like I have seen my own funeral and watched my own body descend into the ground.

I never really felt this before in all of my losses. The natural order let me whisper that they would live on through me. Instead I see an end where there should be a brillant future. He was supposed to be my ripple, and instead I am now his.

And I feel sadly inadequate at times to live large enough for both of us.

Facebook Groups

I live in a sort of surreal world that very few people, thankfully, understand.

A lot of people are on different facebook groups and I'm now a member of several secret ones. I have also sought out other parents that lost children. These groups are places where you can talk away from the world and don't have to pretend. It's a place where you can talk about what you need to, examine the worst in your head.... and sometimes by examining it and talking to other people who look similar to you you can accept it as normal. Sometimes you get a little resolution, and other times it is like a bunch of women (men rarely join although they have at least one group of their own that isn't as active) that sit virtually together and face that there is no good answer.

This is our heart of darkness, but it didn't form from a cancer within, just a sort of insideous event that crept into our lives against our will, wishes, and best prayers.

I've been asked to talk at at safe sleep/sids conference and I think sometimes it would be an awkening for people to know what a parent experiences. I'm not saying any one person experiences all of them, but they are not uncommon.

1.  Autopsy results- waiting, what does it mean, why can't they sit down in person and tell us what it does and doesn't mean.

2. Experiences during 'the interview'- experiences with CPS, PD

3. Medical personnel- did they do enough? Good experiences and bad. CPR.

4. Aspects of death- was this normal? What was that red stuff? When does XYZ set in.

5. Details of 'that day'- it always rolls around in your head

6. Taxes and facing that your child will no longer legally exist outside of this year.

7. How to avoid scum who steal your child's identity. By the way if some other crapster claims them, the IRS won't let you know who....

8. Children facing death of a sibling- do you let them go to the wake, nightmares, insecurities, sweet stuff they do, guilt over things they've seen you couldn't protect them from, going to the grave with them

9. Facing anniversaries and birthdays, the day child is dead as long as he/ she was alive

10. Suicidal thoughts- sometimes of members, sometimes spouses, what do you do when DH disappears and you are afraid he is dead or going to kill himself

11. The blame game- from spouses, relatives, strangers

12. Picking up birth and death certificates

13. Fear of it happening again to future infants, relatives who also lost children

14. Checking other children, fear of them dying

15. Motion monitors, precautions

16. Discussion of causes

17. Saying goodbye- cremation versus burial, the effects of autopsy on your child (some are not warned), lack of casket options, funerals, lingering debts, picking out final outfit, tombstone designs

18. Regrets

19. Missing my child

20. People who pretend the child never exists

21. My child should be.....

22. Pictures and video- nobody asks to see them anymore outside of these groups, so women share beautiful pictures and memories

23. Flashbacks and coping with them, dealing with anxiety

24. Family members who support and don't support

25. Ways to remember your child- projects, charity, momentos

26. What do you do with clothing, objects, things associated with the death

27.  Warnings to parents about their babies pictures being placed on a dead baby joke page (thanks facebook- free speach that terrorizes others isn't speach)

28. Dealing with depression and anger

29. Use of antidepressants, when, what, weaning off, facing loss again after going off them

30. Did you get XZY back from PD/ coroner

31.  Marriage issues relating to child's death

32. Dealing with facebook- the 'God didn't forget you because you woke up' share stuff (when your child didn't wake up),  random painful stuff popping up, blocking versus defriending people who hurt or don't understand you, going off the net because you can't say what you are thinking

33. Dealing with strangers (how many children do you have?)

34. How to include child in family photos, remembering them during family events and holidays

35. How much things or photos do you display?

36. How do you cope with children you associate with your dead child or connect randomly to their death?

37. Longing for heaven or feeling like everything has lost a little color or flavor, when will I care about silly things again

38. Compassion fatigue for people who don't see the big picture in life- worse days of my life involving car break down

39. Dealing with the feeling life is out of order- my child wasn't supposed to die before me

40. Questioning or effects on faith

41. Being taken to task by family for not acting normally, not celebrating happy events enough, talking 'too much' about child, still having up pictures/ keeping things, and not 'getting on with life'- often seen as rudeness or trying to alienate others.

42. 'Kisses from heaven'- little things, dreams, or supernatural events that are seen as messages that there is life after death

43. Supporting parents that are new

The dark side of the earth

I haven't really been posting a lot. I've received some pushback about ways that I have been reacting since Perry died from family members and this no longer felt like a safe way to post.

I am not going to apologize. You can't put me by the ruler of normal human behavior anymore, because things are not normal for me, nor will they ever be again. I am trying to work towards a new normal and I am having a really hard time visualizing what that will be like.

So I think I am going to start with explaining that we did in fact have a couple miscarriages after Perry. Along with a visit to a specialist who told me that the fact I got pregnant with my son at all is a miracle.' Miracle? Are miracles taken away?', I wonder.

So it has felt like God has turned his back on us these months as if we were Jobs without strength. And at times, I felt like God was angry at me for questioning it, that the miscarriages were a sort of punishment.... after all he never gives you more than you can handle- and guess what, I wasn't exactly 'handling' things. I felt like the hope for anything more was being taken away.

I can't tell you why prayers don't work sometimes. I was just starting to feel like, here around me, with every praise for an answered prayer was proof that I had been left behind or rejected. It was in stark contrast to the way I used to feel- that somehow somewhere there was a God who really loved me and was involved in my life. It wasn't always a perfect life, but I felt loved through it all. It got bad enough that I stopped reading the bible, words that used to comfort just seemed to mock.

I heard all around me about the power of prayer but very few people who said Christians are not immune. We are also great at praying for miracles day after day, but sometimes not so good about praying for people for whom the answer has been no with that same intensity. And yet when you are at your worst you sometimes need them more. It's not as satisfying to pray for someone in the dark- there is rarely a clear event you can point to and say "There is my answer". They will rarely come out and ask for prayers, because they don't want to be seen as a victim or someone who seeks oiut attention. But yet I can only tell you that when bad things are allowed to happen, there is the second whammy of attacks that they rarely share. And thank God for prayer warriors. Those people with small notebooks who remember day after day when it is no longer mentioned.

What would he take next?, I wondered. I was afraid to ask on many levels because I am sure things can get MUCH worse.

But somehow, I still prayed. I started praying for other people again. I prayed a lot for God just to let me know he was still there.

For a long time the answer seemed only darkness.

Then on an online group there was a post: "A word of encouragement". At first I thought it was someone with another 'miracle' to share. But here is the meat:

"but Zion said, "the Lord has forsaken me and my Lord has forgotten me." Can a woman forget her child and not have compassion on the son of her womb? Surely they may forget, yet I will not forget you. See, I have inscribed you on the palms of My hands..." Isaiah 49:14-16a.

The Lord no more forgets us when we feel he has turned his back than I can forget my son. He is always on my heart and the longing for him is incredible.

The words that you are foresaken or forgotten about because you feel as if he has turned his back are all lies. But they are so convincing at times... It is hard to see the sun that is blocked by the Earth but it never goes away.

Music

Thanks to a friend, I have rediscovered Steven Curtis Chapman. There are two songs that are really weighing on my heart- I could have written them minus the pronouns or a chapter. I don't know how to explain that finding another parent who feels much the same is both a balm and at times a reopening (of wounds, good memories- all of the above).

The blind rage that sometimes hits is not here today. It is a basic longing for both things that are lost and the hope that all will be made new again. I know Heaven is much more than my child, but at this moment all that I see heaven as is his face.

http://www.youtube.com/watch?v=Z9JTwJ_1lzE

I love the lines about eyes disappearing as she smiles. This is how I remember both of my children's smiles. I say both, because that huge smile of Emily's is still often missing. She still smiles, but not like that so much anymore.

http://www.youtube.com/watch?v=gg7l0vBqMaA

I don't really feel like writing a lot today, so I'll leave it at that.

Perry's Birthday

I have taken a long time to write this because it was somewhat grueling.

The sleepsack project was a success. You can view a local newscast about it here:
http://www.wsmv.com/video?autoStart=true&topVideoCatNo=default&clipId=7379692#.T9KpZJUAQGo.facebook

The day before Emily, my Mom, Sheila, and I went to local hospitals delivering them. It was very bittersweet as I went into a couple of the nurseries and all the memories of his birth flooded back in color. The smell was even the same. Oh how I wish one of the nurses would wheel a bassinet into the room and say, "here he is." That I could take him back into my arms and dip my nose into the soft fuzz at the nape of his neck and inhale his scent once again. Touch his cheek and feel his hands tugging at my hair as he wrapped the strands around cluched fists.

But I knew that our time here was past.

At Baptist, we stood in the room where Emily was as a newborn in the viewing area. Emily beamed as I told her this is where she was born. Her smile was spectacular and I have to admit all the time and resources were worth it for this one moment.

The next day, seeing Perry on the TV on his birthday made it bareable. Today, he would not be forgotten by the rest of the world. Today the Moms that received his picture/ sleepsacks and the people that watched the news would remember him.

I just pray that his smile made enough of an impression that they would listen. And then act.

Stupid Fountain

I was struggling to find a way to deal with Perry's birthday. I knew that as much as my sleep sack program is meaningful, after everything was dropped off at the hospital I would still be left at my home feeling very much alone and empty.

What does someone do for a birthday for a dead child?

I searched the Internet and the experiences of people in grief groups. I kind of liked the concept of a memory garden and releasing balloons, but couldn't really settle. I wanted something to remind me of everlasting life, not a wake like 'celebration'. How did balloons or gardens remind you of that?

Enter the burn house off of Johnson Chapel Rd.

As we rounded the corner to begin preparations, something caught my eye. In a  corner was a fountain. It wasn't the cheesy walmart kind either. Instantly the idea of memory garden with a fountain in the center was appealing.

Firefighters are scavengers. We know whatever is left will be destroyed during a training burn or hauled off with additional cost to a landfill. Typically the majority of the good bones are salvaged by the owners or construction company. So we scavenge copper with the proceeds to go to the TN fire fighter's memorial or towards materials for the training burn to make the house meet safety and EPA standards. Aluminum from ruined garage doors and other scrap might make enough to buy a new grill at the fire station or replace a TV. After that, windows can be replaced with plywood if somebody is in need of a new one. The rule is that if you want it, you label it, and if everything is cleared, no objections, you get it.

So I slapped my name on it.

An email appeared. The fountain was wanted by the occupants- although the last time they were in the house was two years ago and even after the city bought the house it was still lingering there.

But as the days stretched the fountain stayed in place, no word from the old owners who had sold the house. I discussed the fountain with an officer and a date was set that it was OK to salvage. My hopes grew. I didn't want the fountain salvaged for scrap if the owners didn't show up or be melted by the intense fire (it was next to the house).

So yesterday was the day. I was happily surprised it was still there. The thing weighed more than a car- so I had my husband drop off the truck. We had brought Perry home in the truck and it seemed fitting that I was going to bring the fountain home in it too.

The guys shoved and pushed, schemed and finally came up with a solution to move the hulking fountain. They created a lever out of lumber and finally slid it into the bed of the truck making a ramp. About 7 guys were involved in the operation.

They couldn't give me Perry back, but by the Grace of God, they'd have moved a monolith if I wanted it.

They seemed pleased.

Then my bubble burst. I heard something to the effect that someone had just called somebody else in the city and they had sent a reminder to the previous owners, they were waiting to hear back (and what a great thing we have moved it to make it easier). Next rapidly came the news that they wanted it. Then that the fountain had something to do with a lost child and symbolized everlasting life.

So I was a little sad, but I thought it had to be for some sort of a purpose. If it were me, I'd have moved Perry's fountain on the back of my truck shortly after we determined we would no rebuild. There had to be some reason that this fountain was still here after two years, too much coincidence that this object was somehow tying two families who had lost children.

I had it in my mind that perhaps this was God's way of bringing us together for some purpose. That I'd go to get something else I wanted the morning of the burn and the family would be there picking it up. Perhaps God was using to me to move the fountain because there is no way anyone would go through the effort to move it otherwise, it would have probably been salvaged for the metal and left in ruins. Perhaps in return there was something I was meant to gain (not as in money or an object) from this family. Something to do with the fountain symbolizing everlasting life (coincidence I wanted something that day to symbolize it).

So I went home feeling like this was some sort of grand God scheme, and told the guys it was OK, there was no way I could take the fountain to my house anymore.

I heard a grumpy rumbling on the side. "Well I would take it for you."

I love them. They are patchwork people like the rest of humanity and even if they wouldn't take it, I knew they wanted to for me.

I got another call today. The fountain had been picked up as a favor by their old landscapers. The landscapers were grouching that the family didn't even live in the state anymore they were in Florida. It would probably just sit in his yard until it crumbled.

My heart broke.

I can't help but feel like it was meant to be some sort of God plan, but somehow, someway got messed up. Like either the fountain was finding a new home to bless another family that needed it or that I was meant to meet these other parents when they picked it up themselves and through it gain some sort of insight into heaven that would help heal my faith. But instead none of it.

I feel denied. I found myself answering the firefighter reassuringly and then going into the bathroom to vomit after I hung up.

Today in this moment I can't tell you that there is a heaven. I can't decide if my feeling was totally wrong (I really thought I felt a stirring), or if there isn't a God and we just string together coincidences and nice 'whisperings of God' (that aren't really) to make ourselves feel better.

And the loss of Perry just hurts that much more.

Days of Shadows

Sometimes I hear a phrase that just hits me. In a popular song, unrealted to child loss, a young man sings about his 'shadow days'.

I think this is a good term to describe this phase of my life. When you survive a loved one, or brush against death, at times it does seem as if you are living in a shadow world. This world doesn't seem as safe or even as desirable.

At times I feel things challenging me more than they ever did before. As a firefighter, you have to have enough caution to know that death is a possibility, but enough brashness to believe that it won't happen to you. If you wear your magic gloves or your SCBA (self contained breathing apparatus) you will be safe (I think this is why firefighters often make the mistake of wearing turnout gear during water incidents, it is a default uniform that whispers in your mind that, yes, you can do this. So we cling to it in unfamilar circumstances.) But recently I realize this world isn't very safe. If death can steal my child in his bed, why can't she take me when I am on a roof?

I have never been as effortless on a roof as a Neal Mennano or AB Foster, but now sometimes I can feel my legs shake now. I wonder if this is indeed a phase... so I make myself go up on the roof and try to battle through it. I find it is a little like that with ropes as well sometimes.

These shadow days, I wonder, are they a phase or will they last?

I was asking this the other day and I looked up on the wall. In my house, when we first married, one of the first things I bought and hung up was the 23 psalm. It strikes me now: Yea, though I walk through the valley of the shadow of death, I will fear no evil: for you are with me; your rod and your staff they comfort me.

When I was new and going into my first structure fire, these were the words I prayed.

I am walking through. I will not stay here. I may not see where it ends, but like walking through a densely forested valley, I will eventually reach the top and see it is behind me.

A woman I know stated that this world is just life between the trees.

I was thinking yesterday in a moment of time snatched from my day, if there were a God but no Heaven would you still love him?

He has given me breath, my Children, Husband, Family. Rainbows, oceans, and glacier lakes with colors that are hard to describe. Let me touch the downy softness of a newborn's head and heard him gasp with delight just for me.

I decided that I would still be grateful. I should still be grateful for the short time I had. I would still love my God.

Then if there is a heaven, how much more wonderful would that be?

This is just a short wink of time, this life. Whether I am given 45, 75, or 100 years.

My son is running through the meadows of wildflowers like I once knew in Alaska as a child. In just a moment I will be with him. It is summer there, the sun never sets in that land.

Perry's Birthday Project

Safari Friends Cocoa Baby Announcements

Click here to browse Shutterfly birth announcement designs.

View the entire collection of cards.

Perry's birthday is rapidly approaching. So far we will be donating sleepsacks and safe sleep information to at least 5 different hospitals in 3 states. Please pray that these sleep sacks and the messages that are given with them will strike parents to take action. Please pray that they will not only affect these parents, but ripple outwards to the 100 lives each.

They say the loss of a baby affects on average, at least 100 people in their immediate community. May these people that would be touched if there were a loss, be touched without one and continue to spread the message.

Please let parents know that babies should be put to bed on their backs in a pack n' play, crib or bassinet, without blankets, peepads, bumpers. Please think about giving a sleep sack at the next baby shower instead of a blanket. Encourage parents to consider methods such as babywearing while the child is awake in place of cosleeping as a bonding option. Remind charities that benefit young families or babies to consider safe sleep recommendations when making purchasing or educational decisions. Let young Moms that are facing a long list of recommended nursery items on a registry list know that some of the things are not only a waste of money but a danger to their child.

While some babies may die regardless of what the parent does or doesn't do, I want these parents to know that they did everything possible and not have doubts.

I cannot say that. I wonder if the same blanket that I held him in was part of it all. His death is listed as undetermined, it offers no explainations or comfort.

I believe that perhaps there is one child that God is reaching out to me to save. TN has the 3rd highest rate of infant mortality in the United States. When Perry died there were at least 3 other babies that day at the examiner's office in Nashville. 3 other babies whose parents are also facing first birthdays alone. I heard a few days later of another family losing a baby in Dixon. Something needs to change. Something has to change.

Family/ Geneology

I have recently started following an interest of mine, geneology. I have always been interested in it, I guess as a military kid who felt like my roots were nonexistant, geneology provides a way of regaining a sense of place. Perhaps not to a location, but an understanding of where you come from. I imagine this is a strong drive to many, adopted children and just the plain curious alike. But I also find myself drawn to it for other reasons.

I find myself drawing comfort from adding names to branches. From finding women who have also lost children. I find myself getting angry when I 'discover' an infant or young child that the majority of 'trees' leave off- almost as if they are saying that the person only mattered if they produced children or lived at least past 10 or 15 years. It's sloppy and annoying.

When I add that child, I feel like I have reclaimed something from death.

I guess I believe that every child makes an imprint on a family. It changes the personality of the individuals, shapes actions and events. Even the void of a child continues to make a lasting impression on those around it- almost like you can tell the existance of black holes by the movent of objects around them. Like other extreme life events, it magnifies traits.

I added Perry to my tree. He is so small and brief, but what a large impact he has made on me. I want other future researchers to know he existed. Future Grandchildren to say "I remember him on my Grandmother's wall, and look- here he is. They never forgot him.". You can even add stories and pictures, something I will probably do for him. I'll be important perhaps because they came from me. Perhaps the casual people who don't care about children that didn't produce offspring will stop and pause when they see a picture attached and add him. I want to make him matter to them.

Family is such a very strange thing. Family gatherings are too. A counselor said that family gatherings are like sugar. Everything is usually painted pleasant. Unfortunately to get substance, to learn, to grow, to be able to progress you need food- the context of the reality, the acknowledgement of good and bad. For grieved parents to progress, they often need that acknowledgement. If you family isn't capable or lacks the skills, family gatherings are dangerous places. To a parent who has lost a child, it can be the equivalent of a gunrange to a veteran who saw hard combat.

The counselor explained that he believed that we were indeed affected by PTSD. And that in the future, we need to limit or avoid exposure, and provide a safe place and a safe way out to prevent regressing back. To be able to find our new normal (not cure- you can't bring Perry back to earth), we need to begin to control what we can and not allow others to set exposure levels for us. He seemed shocked that we even attempted a family gathering so soon and expressed concern that it might have been damaging.

Just as gatherings, family, and events, the individual people involved are complicated.

People are not all good and bad, we are degrees. There are things perhaps society remembers about a person, what years they served in the military, wealth, and accomplishments that are easily written down on paper. And then there is the other side that is not written down, but just as important. What legacy did they leave to their family? Did they care? Did they leave scars that affect to this day how their children's children react to others?

To understand the scars or negative events, sometimes you have to know the source. It gives you that ability to say this is why this person reacts in this way, and I am not letting the event change how I relate to my own spouse or child any more.

Even the things we don't like to talk about- miscarriages, infant deaths, inherited physical and mental diseases, have value. Sometimes the provide clues to not only what is wrong but how to prevent or treat it.

A person isn't defective if they have a 'bad' genetic trait, mental illness, physical illness, past negative event... We are all given slates with cracks in them. It is how you use the canvas you are dealt and whether you choose to face or ignore them that matters. Whether you allow the cracks to spread onto surfaces your children will write on... And if they do, inspite of all your efforts, sometimes sharing how you patched it on your own slate, or where it came from, is just as important. You don't always recognize them as cracks when they begin or spread, sometimes you only learn that with life experience. But you can give your children the power of knowledge, that may be that little extra piece that allows them to make a concious decision. That takes the power from attacker, the sting from death, and all of the the control from an illness or disease. It gives power to the descendants of victims to say that the abuse stops here. It lets you grow children that are more sensitive to others as a result of your experiences instead of damaged people.

As I look at the braches of my family trees, I am very aware that there are probably saints and murders, revolutionary war heroes and child abusers. Sometimes a person can be both. Perhaps the most remarkable figures do not have the most historical importance, perhaps they are a simple name that brought joy to their family or the person who had the strength to walk away from a history of abandonment and form a family that was well loved.

So how do I make future generations understand that about Perry?

Perry's Stone

This is the first rough draft of Perry's stone, the stick is going to be a crook to hang a small lantern on. I am curious to see it this weekend in person.

Today I also received an email from oriental trading company referring to the catalog they sent to my house for supplies specifically for a 1st birthday party. At times like this the feelings flood back, the sense of the enormity of the loss.

I can't really ignore this day, but at the same time you can't do normal. Cake would go uneaten, and there are no happy pictures. It is hard to celebrate the beauty of a wonderful little boy that I feel privileged to have held in my body, arms, and heart without remembering the bitterness of an abrupt ending to our time here together. We have faith that this is not the true ending, but trust as simple as a child's, that you need to believe it here on earth without tears is hard to keep sometimes. The world is so willing to break it. I see the trust I want to have in my Daughter, her easy acceptance. And everyday I see how even her simple faith is challenged (a boy telling her she had no brother in heaven- did he mean he didn't trust she was telling the truth or that it is not so?).

So his stone is our picture. We want to believe that the angel does not cry because he knows this is no ending. It is a rebirth, a metamorphosis. Perry isn't afraid, perhaps this is the world he has just left behind before his brief travel here, or perhaps he recognizes with an innate knowledge that he is returning to the hand that formed him.

But as always, we miss him here and pray that God will let him know that he is loved beyond measure by those yet to join him as well as those he is surrounded by.

Mystery Solved

My computer contantly has marks on the screen. I wipe them off and they reappear with a high frequency.

I was watching my daughter the other day, I'd left the computer on with a picture of Perry pulled up (on my blog or facebook). She leaned towards the screen and planted a big kiss on his face.

It hurts to know that she has to show her affection this way. In kisses on screens and in other instances blown towards heaven. She is very affectionate, and when Perry was here she was constantly in contact with him. A foot on his leg as she colored, a hand on his foot as he wiggled on my chest in a baby carrier.

She was and is a great Big Sister.

Ice Cream, Swings, and Other Parents

The past few days have been very tough. I keep thinking how horribly wrong it is that I can tell you how much Perry's brain and heart weighed. I read it on the Autopsy, couldn't help but read it. I initially looked at it because I wanted to fill in the last spot for 5 months for his height and weight.

In the middle of all this, I am constantly being reminded that I am not the only Mother who will look at Mother's day this year as something to get through rather than celebrate.

I was given a book called "I Will Carry You", written by a Mom who chose to carry her pregnancy despite a fatal diagnosis. She was able to spend 2 1/2 hours with her child. There were several things that struck me when reading this book. The first was when she was carrying her Daughter and she states that she tried so hard to keep from envisioning her eating ice cream and swinging. If you have followed my blog, you know that the only food I ever gave Perry was a taste of ice cream (and I am grateful for that- I can only imagine how wonderful he thought food must be if ice cream was his first glimpse). And I confess that one of my sorrows is that Perry never got his own swing. My Daughter had a small swing that hangs in the yard with her name on it. When I saw a replica hanging at my Mil's house, I cried for hours, and wanted to take a bat to it. I don't want this swing to exist without HIS name on it. It struck me that I have been given more and at the same time so much less than other mothers. The irony is that the mothers who have not lost a child will not recognize the true extent of the blessings of everyday life. I mourn that I did not make his days more special... At the same time I can not imagine the feeling of holding a living child and knowing that there is no 'use' in imaging a future you will not have. These mothers mourn their children before they leave- is their joy ever full, knowing that the flip side to this joy is the loss coming? I was genuinely happy with my little family. Could I have been happy if I knew what was coming?

Then this shift I think we lost a teenager. I held his Mom in the ambulance and I felt oddly distant. But there was this little voice saying "Hold her, she feels alone". And I knew that today was probably the first day for her in that dream that leaves you screaming at times to wake up, and groaning in other moments, one that you will never wake up from until God allows you to come home to your complete family. The time of scratchy sheets that bring you back to reality in the night, food that gives you no substance but hangs heavy in your stomach like bricks, and flowers that wilt before the scent of your child fades from your house.

Groaning- Have you ever heard that word, perhaps read it in the bible, but have you ever heard one? It is a horrible sound- I heard it only in the voice of patients in bad physical pain before. But how much worse is that low sound when you realize it is coming from you, that your very soul is releasing a little of the pain in a form you can hear?

The one thing that keeps me moving in times like this, is the hope that there is yet good in life for me. That as bad as this groaning of the soul is, that there will come a day I can look back and say "I am glad I kept going. I am so glad I didn't miss this part".

For now I wander through a desolate and rocky wilderness. I am stumblimg through in bare feet, the ground is bloody with my imprints.

But I am beginning to look around instead of staring at my feet, and I see other Mothers and Fathers here. And somewhere in the distance, my Daughter is dancing for joy in some future time, and I have to make it to her to share it with her.

As I try to shuffle forward with perhaps a little direction, I look at these others wandering with me. May God bind all of our feet.

No answers

The results are in. Perry's death is undetermined. They can't say 100% that he did or did not die because of the blankets and things in his pack n' play.

He was pretty much perfect- measuring ahead on everything. Nothing so abnormal that it would cause any concern.

I have a copy of the results in my purse. What to do with them? There is nothing official that will be created with his name again. But what a dreadful thing to have. You want to keep growth reports not this. You don't want your child reduced to measurements and weights.

My husband began crying today as we signed in for our 'conference'. It is the last time we will write his name and birthdate at the Dr's office.

I think secretly we were hoping we would find something- maybe it would have relieved the intense feelings of guilt.

The ladies on the SIDS page say that undetermined is a mixed thing. On one hand, you will not worry as badly about something congenital in your next child. But they warn that we will always be in the CPS system now. One said a diaper rash brought on an investigation. The case is never closed, but left open.

And how it stings, because we loved him. I nursed him, changed his diapers frequently, sang to him, prayed over him. Rocked him. Talked to him. Kissed the soles of his feet so I could feel his toes curl. I would take his hands and guide them to touch objects that he would stare at, but were out of his reach. I didn't want him alone or frustrated, I wore him and tried to let him see as much of his world as I could. I didn't want this. No parent that loves their child would ever want this.

I just received the call from my pediatrician.

Perry's Autopsy results are in.

Here it is. The fear, the grief comingling. The feeling of not wanting to go in but having no real choice. If I do not go it will always hang over me... probably will anyway. At least we will not invent new horrors in our minds.

So sometime tomorrow the nurse will call to set up the time for the afternoon. It will probably be towards the end of the day so we will not have to wind through a waiting room with blury eyes.

What will it say?

In times like this all you can do is pray. Hope that my pediatrician is guided to use words that will help settle the hanging cloud. I wonder if he prays as well? What goes through his mind? Does he even remember his little patient?

Oh God give us strength.

Putting Your Family First

This is a hard post to write.

How do I explain that while it is not logical and against everything you are taught, that for a while during this grief process, everyone has to take a backseat while the immediate family grieves.

You shouldn't have to. In theory you are surrounded by loving people who 'get it'. But what do you do when you can't explain it to anyone because they are all 'bright and shiney', don't talk about it and it won't hurt type? When they don't understand that at times there are no words, and they have to read it in your body language? When they are so busy being fair to everyone that they don't get that at this moment in your life you need more? That you can't always be fair because different people need different things, doling out the same to everyone doesn't work. You can't dole out the same to me, my son is dead. You have to do different things, get over your own hangups about death so you can recognize him as being important to me still. When I can't say no, because the social situation dictates you have to act normal and yet others don't stop and think if they should? When you hurt so bad you can't say stop- you need someone to meet you halfway and read what your body is screaming?

Most of the time your spouse should be able to get you. But sometimes I feel like we are moving in seperate spheres. He is still trying to be fair to everyone. To put on that face society wants you to, or maybe your extended family does.

But this isn't a time to fair, or inclusive, it is about simple survival.

My survival.

I can't glorify God until I wade through the valley of death. The wading part, the going forward is my testimony that I think there is a God out there.

I was really tempted not to write this, but I suspect that sometimes there are Moms out there drifting away. I also read great comments like you have to be the guide for those that don't get it.

Don't you get it? I am trying to guide you.

Say my son's name. Just not on the phone, but in public. Hang his pictures on the wall prominently, it may take the sting from seeing pictures of babies doing what Perry will never do. He will never sit on Santa's lap... Oh don't you think the thought kills me inside? Ask me what to include when you take a family photo to 'hold' his place- or do you really not believe all that stuff about God and Heaven?

Or maybe even put more pictures of him than other living relatives. You have so many things you can still do with them. These pictures are all I have left. Don't try to balance it to be fair. You can't spoil him.

Let some things be special for my daughter. She needs, I need her, to be special right now. By making all the same things for everyone it tears me up because I know exactly what Perry should have but will never get. Let me imagine that had he not died there might have been special things you felt about him or would do for him that you would for no other. There are things she is capable of because she is the oldest, but younger children can't do. You don't hold her as much as the younger ones, so let her shine as the only one that can do some things for a while. Let her be in pictures by herself or stay up later. Or be the only flower girl because she is the only one old enough to be.

Let her talk about her brother and not leave her comments dangling awkardly in the air. You would ask about a living brother, so ask about Perry. She remembers even if you would rather she not.

We're not normal anymore. Fair isn't normal anymore.

To us nothing is fair.

You glorify God for new babies and his 'plan', but mine is gone. You never mention him anymore. Does God just hate us? My plan was ripped off the wall the day he died.

Think about what you say.

Dear Parents

Dear Parents

I did not die young
I lived my span of life,
Within your body
And within your love.
There are many
Who have lived long lives
And have not been loved as me.
If you would honour me
Then speak my name
And number me among your family.
If you would honour me.
Then strive to live in love
For in that love, I live
Never ever doubt
That we will meet again.
Until that happy day,
I will grow with God
And wait for you.
by Christy Kenneally

There's a Baby Missing

"There's a baby missing."
There is, but it is not the one you call yours.
He had soft brown hair that curled in tufts of fuzz around his ears,
and pretty blue eyes like his father.
He laughed at being raised in the air,
and had a ready smile even for strangers.
Don't you remember that he shared it with you?
You seem to all have forgotten.
You never mention his name,
like the pain is not worth the memory
of one little boy.
I see my son in the babies,
the should have been Perry
and the horror of just his corpse.
But I have to smile,
pretend it is all ok.
The camera flashes.

And I will never be the same.

Compassion fatigue? Mourning?

I noticed that I am having a really hard time lately feeling compassion. At first I wrote it off as fatigue of dealing with people that have no clue. The people that cry about a car like a person died after a wreck. That was fairly exhausting to deal with after you have lost a child.

After all, there wasn't anything really wrong with me. The Dr. from the EAP program seemed satisfied that I said I felt I was doing a good job at work, just couldn't feel for stupid losses people had any more. I talked to him about how I see my son dead sometimes in things that trigger it: the faces of some babies, moments where I am doing what I was doing the days and nights before. He seemed to think it was fairly normal. I developed a desensitization plan (without his help, he offered very little practical advice and focused on breathing techniques) for things that I can control. I expose myself in small progressing steps in a way that I can stop and back off if it gets too intense. (Unfortunately not everyone will let you do this- I'm five months out and should 'deal' with things right? At least that's the vibe I get. But now the pain is as bad as the beginning, only in some ways it is worse because I am starting to know on some levels that he is dead and is not coming back. And right now it is so raw it is hard to look at a religious view that would normally bring comfort. I'm back to screaming at that God who works miracles but chose to allow my son to die.)

Now I'm actually pretty normal. The ladies on the baby loss groups try to warn the newcomers that at five months the death hits in a full way. To anyone who hasn't lost a child I'm a bit crazy perhaps, or selfish because I can't see through the pain that is hitting me and obscurring my windshield to view their normal world.

But recently I became alarmed. I was on a call where an individual was having serious health issues and the daughter went into the closet so she could cry. This is where I usually spend a lot of emotional coin, I'm a natural hand holder.

I followed her and I said all the right words, but I felt hollow. I knew that I cared but I didn't feel it.

And I began to examine a lot of my other emotions. I have trouble feeling now when adults die. I mean, if my son could die, why should anything be shocking? Why should a fifty year old man be spared when an infant can die?

I also have trouble empathizing with losses that don't actually come from a result of death. Divorce? Broken relationship? At least the person you loved is not dead, I think. (Again, not the old Katie). I know that academically I feel bad for these people but the emotional echoe is missing. I long that he could still be out there, even if I could never see him. He could still have all the things life offered, I just couldn't see them.

So I googled a little. Came across one of many firefighter related magazines and a word popped, sounded promisng. Compassion fatigue.

So I excitedly read about how to cope with it. The primary thing was to realize that the traumatic event you witnessed or participated in the aftermath did not happen to your family. Great words for a responder to a tramatic event right?

The words were devastating to me. It DID happen to US. I recognize it is not a single call I went on, but the death of my son. I know it because I see him and shoo scenes from the time leading up to his death, the first time I looked at him in my husband's arms after his death, and funeral regularly from my mind. I remember small details- the images are crisp like video instead of hazzy memories. The color of diaper he was wearing, the look on his face, the striped nightgown my daughter was wearing, the dust bunny under the recliner next to a empty yogurt cup my daughter had ate, the colors of the rooster on the coasters she was still holding in her small hands as she wailed to me. Details of him. Specific, like a zoom in camera as if my memory had whispered to take a close look because these were the last images I would ever see of him as horrible as they were. The time before is like a slow moving video.Most of the time I can cope. I just back away a bit. Go to a safe place and cry as I let it finish playing. Then I get busy.

But I can't cope when I can't control it. When there is no safe place.

So what is it? What do you call it?

And how do I get back with the other people who haven't had any major losses? The pretending and small talk are ok sometimes, but just sap you mostly.

 I'm actually getting a bit mad now. Tired of people expecting me to do all the work. Don't you think if I knew how to make the pain go away I would? And I do- but all that will work is you handing my son back to me. But why is it that I'm expected to make all the approaches while everyone acts like everything is normal. I want someone to look at me and bluntly say "How are you Katie? And not the polite crap answer, please." That is really all that I want sometimes (you don't even have to do it everytime you see me, just once in a while when there aren't a gazillion people around). Do they not want to know and ruin their bubble of peace? Is that why they act like everything is normal? Or are they afraid? As long as you do not expect me to do or act X, Y, and Z I can talk with you. And I want some control. Please do not try to force me into normal, when it's not and the mold will break whatever new frame I've managed to tape together from the pieces. Sometimes I think people try to call forcing you into their frame 'making you face life', when in reality it is just easier for them for some reason, or they feel entitled (its their right) for whatever random excuse they have. I feel an incredible lack of control since my son died, and I need to be able to determine the rate of hurtful things that get thrown at me. I need to control the rate at the images that flash at me. You see a random child or baby, but for me the image morphs into my son (the should have been Perry or the Dead one). It might be inconvient or ripple your bubble, but I think somewhere I'm still worth the effort to help salvage. And I want it to be ok to be angry sometimes- look it up, it's a grief stage. Otherwise I'll play your game and try to act normal, but I'll explode. The venting is a pressure release and it is necessary.

Pictures

I think a lot about pictures today. Perhaps it is because I picked out images to go on Perry's card and to give to his stone artist. It hit me really hard because as I was thinking how I should have sent out a birth announcement or a one year birthday invitation with his picture on it (rather than a memorial cars with a safe sleep message), I rounded the corner at a highschool our engine company was visiting, there was a very long line of baby pictures for all the graduating seniors.

The theme of this week for me seems to regret for all the things he will not do, the graduations, road trips, and wedding that he will never have. The senior photos, the upcoming wedding of my SIL, and a trip in a small plane for the first time without him.

So I will cry today and then paint on a happy face. Because everyone wants to be happy and sadness has no place in our society. You hide it, avoid it, and cover it up (with pills if necessary). But unfortunately that's not for me. That doesn't allow me to face it. Before you can get to your new normal you have to fully experience and understand your loss. You have to get familiar with it so it can finally blend into the background of your life instead of sitting in the center glaring as you try to pretend it is not there. Hiding it will just allow it to pop up later, the pain to breed and multiply under the skin until it works towards the surface.

The problem is facing grief in a society that pretends it doesn't exist is a difficult proposition. To an extent you are forced to compartmentalize yourself, but it doesn't always work well. Everyone always tells you if you are 'yourself' everywhere then that is the best policy, but the reality is that we almost all have multiple roles. How many working parents act like work is the most important thing on the job, but family is when they are off? Whether or not this can ever really work is questionable. Something has to give at times... and that's when you figure out what is really important as it reflects in your decisions. You will always begin to excel in one area and neglect the other with this extreme split. Grief is sort of like that, at times you have to make a choice about how to be honest with others even when they would rather you pretend. So I try to cheat a little. Hidden babysocks in pockets at work or pictures on a bracelet. And I try not to pretend too much, but I do not necessarily volunteer my thoughts. But if I were honest there are times I paste on a smile or my laughter is hollow, I make the decision to pay for it later rather than make someone else uncomfortable.

In general I tend to think that when I can fully face things as they happen in my mind, I am better off. This delay of emotions just make it feel like there are two seperate painful events rather than just the initial moment something hits me.

But it is just not a choice you can always make and stay employed, or keep friends, or prevent family members from being alienated. Because a lot of people really just do not get it. But when you pretend sometimes you feel like you have lost those people anyway because it is no longer an honest relationship. I think that is why so many people who lose children shift to new friends or drift from family for a time.

You just get tired of lying.

Photo Card/ Perry's Birthday Project

Safari Friends Cocoa Baby Announcements

Personalized cards for babies, Valentines, Easter and Mother's Day.

View the entire collection of cards.

So preparations for Perry's Birthday begins. I know it will be a rough day and I am trying to do something proactive with it. Above is a copy of the card that I am including with sleepsacks that will be given out to parents of babies born on his birthday. I am going to cover at least Vanderbilt, but am considering branching off to other hospitals.

It infuriates me to think that for a small amount (probably the same as they charged us for the no slip socks), they could have sent us home with a sleepsack. The hospitals are what parents mirror when they go home. The blanket they are swaddled in sneaks into the pumpkin car seat, is used in the crib, and then when it gets colder a thicker one is substituted. More stuff starts creeping in.

I still do not know Perry's autopsy results, but I do not want any parent to have to experience the doubts and regrets that we do.