Friday, November 30, 2012

A small victory?

I gave the hardest presentation of my life today. I spoke on sleep related deaths and SIDS to a group of about 150 nurses and state employees. In my talk I reviewed different aspects- views of SUIDS parents (sudden unexpected infant deaths), the long term effects on families, anatomy of Perry's loss that broke it down into factors, and spoke about risk reduction of sleep related deaths. The irony is that I think most aspects were already covered by many experts.

I started my talk by explaining that in fire prevention, sometimes we presented lost lives by pairs of shoes. I explained that today I wasn't talking about a statistic, but my son, and I pulled out his small pair of shoes and put them on the podium. I set out rules- that it was ok if I cried, they weren't doing anything wrong nor was I by crying. It was ok to ask questions, I'd  let them know if I was uncomfortable. I went on to say that my son has a name, his name is Perry, please refer to him as Perry.

Was it a success? Have any of my efforts been?

As I spoke, there were maybe two wigglers in the back- you know the texters who will disregard any presentation. But I noticed that 148 pairs of eyes were on me. The state medical examiner had tears in her eyes, and there were many that were visibly moved. I was blunt in portions, but I think they understood.

Afterwards, many people came up to me.

Many thanked me and called my presentation brave. I had nurses from the hospital I delivered Emily at come and explain that many things were in the works already- pulse ox screenings for newborns in January (you can thank other baby loss Moms like Cora's who have fought for this in other states) and sleep sacks at Baptist. Vanderbilt, where Perry was born, is still using blankets, but perhaps that too will someday change.

The DHS person in charge of daycares explained that they received my letter and cried when they read it. Starting in January they will require taking blankets out of daycare centers and using sleep sacks or footed PJ's instead to be more in line with the Academy of Pediatrics recommendations. After January, this means I will no longer have to walk into Emily's (and what should have been Perry's) daycare and see infants under thick loose blankets. I will not have to have this reminder if I am blesssed with another healthy child. When I help with any daycare fire inspections in TN, these children will be in a safer environment and I won't worry about these babies as much. Perhaps a parent will stop and think twice about a blanket if they note that the daycare doesn't use it- especially if the hospital they delivered at doesn't.

I feel like in a small way, we are/have encouraged a cultural change in TN.

Sometimes best practices have a habit of spreading. Perhaps one day this will be standard fare in every state.

In the audience was a pediatrician who helps revise safe sleep recommendations for the American Academy of Pediatrics. Have I deposited anything in his mind, I wonder? He thanked me, and finished by saying my presentation was very practical. In some ways our presentations were mirror images that were imperfect copies; his shaped by statistics and tables- mine by experience.

Does it make Perry's death hurt less? No, but it does take away some of that bitterness of losing your child and yet the world revolves as if they didn't exist. At times it seems our tragedy is nothing to others, pretend and it didn't happen. Pretend and it won't happen again. Because when I see babies in daycares I will know the blankets are gone because he mattered to me and somebody else thought his loss was important enough too. And they acted.

Thursday, November 29, 2012

Nature of God

I have made no effort at hiding that I wonder if God hears me when I pray. I think the questions surrounding why or when God answers prayers gets to the heart of what you believe the nature of God to be.

What do you believe God to be? I think sometimes people see God as a Santa Claus without a loud red coat. You pray and like a gumball machine he spits out an answer. I don't see it that way.

I could and at times, are very bitter because I didn't get my miracle. Facebook doesn't help, as anything is often attributed to God's grace and it kind of leaves you feeling like a kid left out of an exclusive club. Church can feel a bit like that at times.

But I came to a realization a few days ago. I was reading on an infant loss support page and women began talking about paying for Christmas gifts. So many of these woman or men lost their jobs after they couldn't function normally... it turned into a discussion on donating plasma for money. My heart bleeds for these women- because losing a child is now one of the worst things in my mind in this world and yet these woman aren't receiving a free pass in life. Some don't believe anymore, washed of religion by a 'plan' that took their child, others never did, and some do. The good aren't spared, even after losing a child.

I now look at things and instead of asking, "Why me?" I am asking "Why not?".

I am starting to accept that God may not be Santa Claus, but he is a peace when it makes no sense, and the only way back to my child. If you had to choose between a God that worked like a pezz dispenser while you are alive or one that would give you eternal life but wouldn't give you the easy button on Earth, which would you choose?

Saturday, November 17, 2012

The Happiest Place on Earth?

The anniversary of Perry's death, both days (time change day and actual date) were brutal as to be expected. I really didn't want to celebrate it, but you can't forget. So we acknowledged it by buying a larger lantern for the hideout and burning some larger candles in it. I will save the good imagery and celebration for his birthday, the bittersweet celebration of his arrival and short time with us.  I've already decided that I am going to buy a classroom kit for butterflies (ordered around Emily's birthday) and release them on his birthday.

So after this grueling week of crying on the way home and Big Sister becoming generally sadder/ demanding her brother more, we splurged.

We had been talking about Walt Disney World since before Perry died and had every intention of taking everyone that fall or following spring. But we know life, or rather death, has a way of robbing people of the should have beens, and instead we stayed home. Relatives tried to get us to go anyway (after all what better way to instantly recover than going to something you were supposed to do WITH your child, SARC). Well meaning people also suggested it when we were astounded with generosity and before realizing that other than the funeral home, plots had to be bought, a small vault with a 'lifetime' guarantee acquired, and a stone selected. We were oddly protected in that the amounts came out to just about cover everything except the stone, but the money and most importantly the will wasn't there to go.

The reality is that I am glad we waited. Nothing can make everything all right once you have lost a child and I think we needed to know that before we went. 90% of it was happiness, but the other 10% was an incredible sense of loss and incompleteness. We knew to expect it, so the shadow of the pain didn't totally eclipse the happy moments.

Before we left, Emily told me she was sad that Perry couldn't go with us. I told her that perhaps God would let Perry check in on us.

On the way there, a brief rainbow appeared. "Look, God sends a rainbow to tell you that a baby is safe with him". This moment seemed to settle the matter for her, and she continued the trip without hesitation. When it disappeared a moment later, she simply said "God has to tell other parents that their kids are ok."

I remember the first time Emily got to meet Cinderella and Aurora, a radiant smile spread across her face. It was that same rare uninhibited smile that I saw when Perry was born. I teared up- it was not fair that Emily did not smile as much as other children, that she was more aware of life and death than many adults are (Have you ever had your child ask if fish bleed when they die or where you will bury a pet that they just received and love desperately? Or have you heard a child ask how many years does Luke Katherine the Beta have before he dies? I have. She feeds this fish three pellets a day religiously, and stares lovingly into his bowl chatting with him. She shouldn't be thinking about this fish dying- in some ways I wish I would have got her a bird that had a chance of living until she left the house and life had given her other more important things in it.) or that we were without Perry now. He should have been in many of the pictures with his Sister, but he wasn't.

I saw his ghost in the face of an 18 month old child with his plaid shirt and similar dark lashes. The same shirt that is still rumpled in the sleeves from the last time Perry wore it. The same one I sit crying, trying to find his scent when little remains now beyond the smell of dust. I watched him as he stared at the moving figures on the Small Worls ride. His parents stared ahead oblivious and I wanted to tell him to stop and look at their son, how the important thing wasn't the ride.

I saw things with different eyes. The rainbow bands weren't just line skippers, perhaps that little girl's beautiful hair was a wig cleverly held down by the Mickey ears. The elderly couple with the disabled daughter that looked like they couldn't normally afford this, were they trying to capture memories while they could? I heard one family say they didn't really care about lines 'you won't see these people again anyway', and I thought "How clueless, they are missing it. They don't see the make a wish children, or the ones that you would gladly let skip ahead. They don't really see us- we are a family with a little girl to them to rush in front of, not a family that is missing a very real part of them." They are about the adrenaline rush I suppose, the momentary pleasures that fades like cotton candy into nothingness. They will miss their own families in this rush- sad, but the oblivious to others will rarely think that time is also limited for them with people they care about. Perhaps the Leukemia diagnosis isn't there yet or the car hasn't jumped the line, but we all go don't we? Perhaps their time with loved ones will never be as short as the time we were blessed with, but does it matter if you don't really value that time?

But I laughed on cheesey rides (except for the jungle cruise for some reason), ate pretzels and huge ice cream sandwiches, and most of all, I got to watch my daughter smiling with her daddy, cheeks pink with excitement from her first log ride down splash mountain. Yes, I wished I could have gone with them, but this after glow was reward enough.

I did find my new normal creeping in at times. I had to stop myself from waking every sleeping baby in a stroller or checking their pulses (parents rarely understand that I can stand children laughing, it is the sleeping that looks like death that makes me freeze inside). I found myself crying at night from the longing. The desperate need to see a child smile that wasn't there.

The days were largely Emily's, but the nights were Perry's. And only God really knows how much I miss him.