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.