Tuesday, January 31, 2012

Smiling Babies

My impulse has been to avoid babies, but I can't help peeking or looking at them across a room.

By all rights I should be avoiding them, I can remember not liking babies or pregnant women much at all after my miscarriages. But I guess the lesson with Perry is that they are the forgotten people. I don't know what it is, I don't smile at them. I just look at them and study the face as an individual. Usually I am in a crowd. There are lots of people looking casually or making stupid faces, but they make eye contact with me and smile. I have never had this many smiling babies around, even when I tried. Even when I was happy with Perry and Emily on our 'town' adventures.

So do they sense that I am looking at them, really seeing them? Not just casual cutesy stuff people do to make the Mom feel good, but wanting to know who that little person is over there?

I really want to stay straight faced, but here is this little person charming me. My son charmed me the night before I left to go to work, and even though I was upset I had to smile back. I want to ignore them, act like I don't see them, but that would be denying that there is somebody who is trying to make friends... telling them with my actions that I don't think they are worth my time even though I know they are there.

I can't do that.

So I smile, I wave if they are smiling across a room. Sometimes they cackle or coo back, wave arms and wiggle in Mom's arms in excitement.

I have a friend who describes the veil between heaven and earth descending when a baby is born. That to babies and young children this veil is thinner, so they see things as they really are. They sense the unseen with a reality adults can't. So what do these babies see? If anything I look older and a lot less 'attractive' in some ways, some of my hair is growing out in tufts from where I lost my hair when Perry died.

I don't know.

So my heart is softening a bit more. If there is anything to take my grief out on it is not these babies.

But I have drawn one line with these smiling strangers. I will not hold them. I want that first to be my own, if I am blessed again. A Brother or Sister who would naturally receive them if Perry were here.

That's what I tell myself at least.

Perhaps that is too simplistic. My husband said, looking at a poster advertising no reprisals if a baby is left at an occupied fire station, "I bet that would break you heart." I thought about it. Not really, because at least the Mother cared enough to make sure her child was safe even if she couldn't handle motherhood for whatever reason. So I would hold THAT baby.

And then I think about if I went on a neonatal call, would I hold a baby to perform chest compressions beneath my hands. Yes, I would hold THAT baby.

And what if it were not sadness, but a mother giving birth, would I be willing to hold the baby for the first time? Yes.

I am not completely broken... But please understand if I do not hold your child. It is not that I am in denial, I am just holding to hope that one day there will be another baby in our house. I am saving that first for our own family. It will not be a Perry Bryce Williams, he was unique and will always be loved. But if he/ she has his brother's nose, or eyebrows it will be very sad to realize that I will not see them on him for a long time, but I would also love the fact that the same DNA that passed to Perry is popping up in another child. I admit I mourn Perry will never have his own babies to hold, he was worthy of going on in some small way here on earth. This I think, is the closest I will have to that. I loved the fact that Perry and Emily had the same long feet, and I love it still.Or perhaps, years from now, when Emily holds a baby I will see him in them. It is always comforting to me that you see the people you love in your children. It is what we have left here after time wears the ones we love away. Now instead of just Grandparents, I will look for Perry as well.

I don't know how long this will take, or if it is even possible. But I hope it is.

I understand why parents take such comfort in organ donation... they just want something left here that goes on and helps another child go on. It's not much compared to what is lost, but it helps.

Someday.

Monday, January 30, 2012

Darkness

I've noticed a huge pattern in attacks.

What is an attack? That may be a better place to start....

I think when you have had a devastating event horrible thoughts and mental pictures assault you. This is where I go out on a limb a bit. Sometimes it is your own mind you are fighting, but sometimes these thoughts can seem to come from outside. While reading "The boy who went to heaven", the father stated that sometimes it seemed the the worst spiritual attacks come at night. Now, do I believe everything in the book? I guess I'll find out when I die, but the part about attacks... It's true. I know myself, and some of these very deep dark thoughts are not in my normal character.

Before you turn me in, thoughts of harming myself or others physically has never been an option to me. Perry dying is beyond a doubt the worst I have encountered, but I walk and live in submission. Part of that submission is accepting that it is not my time, so right and then left foot (repeat as often as needed). It's not an incredible victory, but it is a small start. When I have a hard time praying I start by thanking God for my children and my family. He may be gone, but he continues to be a blessing to me that I held him. I know I was given a lot, and still have a lot that I love here. I can't throw all this away.

I don't know that I will go into a lot of detail about them, but I'll share a little. The first type of attack is one that focuses on causes. I am convinced that the devil will use truth as easily as lies to get to you. The lies are easy to see, but the truth out of context can be a great tool. Any time something bad happens, there are a series of holes or actions/ coincidences that need to line up for it to occur. At times, I see the holes I could have closed, at others the times Chris might have, and as odd as it sounds even the part Perry played in it. Sometimes holes are added that really aren't there.

The second is images (imagined and real). I'm not seeing illusions, but my memory can be a horrible place and my imagination devastating. Up until Christmas, all of Emily's dolls were not life size, and she only wanted two small things for Christmas, so we got them for her. One was a more realistic doll, and I have to admit that the adults in the family dislike it a bit. It just segways into our worst memories, and I find myself coming back into her room to turn it over so it faces up or to uncover the face from blankets it as if it was an infant, a little nervous for a brief second. I didn't understand why it made me anxious until my husband explained why he didn't like it. But Emily loves her baby doll, and so here it is.

One imagined hole that I have trouble with, and can share with you is related to my job. I'm a firefighter, but in this day and age you run more medical calls than anything else, so I am also an EMT-IV. I always seem to wind up in the back of the ambulance on medical calls and have done a lot of chest compressions. I have this horrible fear that I should have worked him. That my husband should have told 911 to come emergency... That they should have at least run an EKG strip.

And this is how I was finally able to beat it back.

While searching for "The Boy Who Went to Heaven", I noticed a couple books by Max Lucado and just felt that I ought to look inside. There was a small section on grief, and I almost put it back, thinking that was what I was meant to see, mission accomplished. But I didn't, and I thought, 'Ok then, it's a free library book' and drug it home. It was about baggage.

So what section helped me? The one on pride, oddly enough. It's not something I struggle with too badly, but I read it. I started at the front and read everything in order. I figured I can always get better, and if I have been crushed by Perry's death, now is the time to rebuild and hopefully come out a better person (not better for it... if that makes sense?).

It talked about pride in accomplishments. This got me thinking about awards, and with awards about the life saving award I may get this year from the department for helping with a CPR call that resulted in a living patient. I sort of smiled with amusement at it. Of all the awards this is the most out of our control... I have done CPR just as correctly on lots of people. In about 11 or 12 years as a volunteer and as a career firefighter I have done CPR so many times I can't really remember them all. We sometimes get a heartbeat back with the AED/monitor after many drugs, sometimes they come back for just a day, but very rarely on any of these calls do we get a save. It is wonderful, but the results are largely out of our control. It depends on the definitive care they get at the ER/ the surgeon if they make it that far, and quite bluntly that isn't even really it. I think if you were able to ask a surgeon they would feel almost as helpless as the EMT's, with good surgeries resulting in losses. That's up to God if they live, we are just tools. Up until this year, I had never been part of a lasting 'save'.

"So Katie, if you think you don't determine if they live, you are just a tool... what makes you think you determine if they die?" So I know it was already done when I walked in the door. I think I just sort of knew... I think that if I was meant to, I would have been able to. Shock is a horrible thing, but I am not so sure it really was shock. I was able to hold him, do a few compressions, but it felt useless. I had to triage and my thoughts went to the little girl on the floor crying.

At least that helps a little. When the thought creeps up in the dark, I have a baseball bat now that I can beat it down with. Hopefully this doubt will eventually fade and then leave completely.

I guess what I have learned is that you can be given more than you can handle in life on your own.The attacks come pretty regularly, although sometimes they fade only to come back with a forcefulness a few days or a week later. They usually come with the dark... Sometimes I wake from a bad dream, surrounded by fear and shadows, only to find Emily and Chris thrashing beside me with their own. And then I pray and they seem to fade a bit, the thrashing stops.The prayer is what seems to help, I guess the trick is that you can get help but you, or others, have to ask for it.

We tried to put Emily to bed by herself for one of, if not the first time since Perry died. Putting her to bed was incredibly tough, I could tell Chris was having flashbacks after I told him she didn't need any more blankets. We had to skip the goodnight song Chris has sang to her since she was born. It is something he made up to the tune of the Barney song and ends with "it's gonna be okay, gonna be allright, time to go to bed tonight." He hasn't been able to sing it since that night. We will have to make up a new song to sing, one without promises that we no longer feel we can keep... although what a sad thought. Innocence has been lost by all three of  us forever.

Eventually I told him to go get her. I hope that with time, after putting her to bed in her own bed repeatedly, one of this nights she will remain safely in her own room. I might even buy a small cot for her to use in our bed, to transition us all.

I still didn't get a lot of sleep.


Friday, January 27, 2012

Stone Part 2

We finally arranged for the first meeting with the sculptor. I think we both know what we want now. I think we are going to ask for an angel holding perry holding her other hand up with a small hook in it so we can have the angel holding the lantern. I want Perry smiling or curious. I do not want a weeping angel, because I want the angel to be sure that this child is going home. Chris wants the lantern. I think the theme is that we want to envision Perry being carried home and guided by light, not alone and left in darkness in some purgatory of the people who do not believe in God's unconditional love for children.

I have no idea what this particular venture will cost us. Worst case scenario is a no and then we will be no worse off. We don't drive new cars or gamble, we do not smoke... so I am hoping we can swing this.

But then now I am left with the task of digging through my Perry file to pick out his most recent pictures and video. This is already breaking loose the waterworks. How sad is it that a person's recorded life can fit in one computer file? I would actually be comforted it it at least bogged the computer down a bit, but in this day and age it easily fits on one memory device. The abscence of these other pictures is the worst part. His life was too short... even his belongings all fit in Emily's closet along with her extensive wardrobe.

But I am hoping this memorial piece will be a nice move in the other direction, give us something a bit more permanent. I hope that the people that attend Perry's little church will like it. If I go there one day after service and see people stopping to look at it after a service, I will know we did this piece right. He deserves some special things to keep his memory alive in at least a small way. I want it to be beautiful, something that makes me happy when I go and see him instead of something so small all I can do is caress his name and a very short stretch of dates that mark his physical existence here. Something his sister delights in.

I don't really like to go shopping anymore anyway. It's just all cloth and plastic. Here is where maybe money can buy a little solace in a place where we need it.

Support that hurts

I was an online 'support' group. As with  many generic women's sites, there weren't as many posts from women with deceased infants as women with miscarriages. If 10-20% of all pregnancies end in miscarriage, there are A LOT of women that experienced miscarriages, whereas an infant death is a small percent of 1 in a thousand live births... not counting all pregnancies lost. So what did the site do? Go ultraefficient and lump the loss of a child under the age of one (after all an infant isn't an actual person yet, right?) with miscarriages at 6 weeks when most women haven't thought to test yet. It isn't to say that they aren't all valid losses, it just isn't appropriate to group them together. So many women with miscarriages get upset when women compare it with the loss of a loved dog, but go up to a woman who has buried her child to tell her she knows 'exactly' how she feels... A pregnancy at any point is not an animal, but it is really about as obscene if you have experienced both a miscarriage and a child's loss. And this is what these woman were doing.

A poor woman with a stillbirth posted looking for a group that 'got' her and all the 1st trimester women were insulted that she thought her situation was different or might even think it was more hurtful. I am just sort of flabbergasted at some of the nasty things women posted to her and me 'a loss is a loss' 'they all hurt equally', even the moderator. She can speak for herself, but I know that for me it isn't the same. Nobody would give up a child they know for the promise of one that they didn't.

I have thought and prayed a lot about it. Perhaps to an individual it can hurt as much, after all, they don't have my frame of reference. But it really makes it sort of a one up you board rather than support. The idea is, after all, to help everyone and not acknowledging differencs prevents the ability to support, prevents the ability to recover. After all, can you really say that a woman who scrapped up for IVF, only had enough money for one shot and had a miscarriage doesn't have additional concerns or sadness? It doesn't acknowledge that some days are harder. It doesn't acknowledge that losses are really different. It makes me feel that there is no hope for these burns to heal into at least scars because you will always hurt equally. And it sort of ticks me off.

Here's why. Everyone I meet who didn't know Perry or doesn't know me treats it like he never existed, or at best, like a miscarriage because that is their frame of reference. And society treats miscarriages pretty badly anyway. But if you have ever given birth, ever held a baby in your arms, you know that is a life changing moment. It gives a face to your child, and to give birth every Mom opens themselves to potential sacrifice. Your body is not your own for this time, it works for your child. This child is no longer a nebulous dream it is a specific person. When infant loss boards are also miscarriage board it just confirms what society believes in an arena where it shouldn't.

To make it easier on them, people try to imagine an infant death as an unformed person. But the fingers and toes are all there. And if you are fortunate, and the child lives a little longer or was active in the womb, you can begin to see personality too. The problem with lumping an infant death with miscarriage is that it denies that the parent ever met their child. Miscarriages and child deaths do share the loss of future. But with a child that is born as a stillbirth or a living child (and I am not making distinctions in age of gestation) the parent has a mental picture of what exactly is lost that haunts them. They miss an individual and not a dream of an individual.

With stillbirths and early loss after birth, there is an additional trauma that I didn't have and that I am sure she needed support for. She left this specific baby there and was never able to take him/her home.

With a later loss,  in the time that parents spend with a living child they comes to know the individual and they mourn for a person. That is another difference. It is hurtful for those that never got to know their child, but a different sort of intense pain to lose somebody that you love and value for their personality and features. To never hear that particular cry again except maybe in videos if they were lucky enough to capture that and not just ideal home scenes. Or maybe they even deleted these, because they weren't what they were trying to capture, but would give anything to get them back... An infant death is also just extremely wrong. My son was healthy and young. I think it hurts me more than the loss of my Grandparents because they lived full lives. It's an intensely complicated grief for me, because there is no easy explaination.

 I think after the 2nd and 3rd miscarriages, Perry was very healing because I loved him so much it made all the pain worth it. I loved this particular boy that I was grateful for the timing. I felt like he was meant to be and I didn't want another child, I wanted him. So if it meant I had to have miscarriages but arrived at this particular blessing as a result, I could deal with that. I felt a little guilty over it even. But if all my pregnancies has stuck I would not have the exact children that I was blessed with here on earth, and I really cannot imagine having any other children. I don't want to trade them. So it is this definitive knowing of a particular child (his eyes, hands, personality, long super hooves) that makes his death so painful to me. I don't say that I don't understand the pain of other losses. I personally can only imagine the horror of not being able to take your baby home, and can see how she needed similar women to talk to. It was just pretty cold for women to think she shouldn't hurt differently or on a different level.They definitely weren't trying to help, just lashing out angrily in their own pain. One woman said her Mom minimized her loss because she had a stillbirth, but yet here she was doing the same in reverse. You minimize any loss when you do not reccognize it is unique. I hope they will stop grouping all losses on the same board. I hope these women never experience a stillbirth or a loss of a child. A miscarriage is their 10 on a pain scale. My son is mine, it isn't the same as theirs anymore.

Actually that's not even true- I know there are worse, or some type of losses so different that I am not even sure how to categorize them.  I can't imagine the horror of one lady whose husband shook her baby to death and now she is attending his murder trail or parents whose children are abducted. I also don't know the exact pain of watching your last chance at a pregnancy go by... I have no clue in that area to know how to group it. But I can know that it is hurtful, I know the loss of my first pregnancy and that doubt of if I could ever have a biological child. If I said all losses were the same, how could I really support them when what they need is different than what I myself need?

I am trying to accept that with time, maybe this grief will subside some.That pain level does not have to equal my level of love. Perhaps there will come a time when I will not feel as raw as the women on the miscarriage list. I like the idea of recovery because I will not be normal again, just as a former alcholic will never be the same if they hope to change. It acknowledges that I will always be different, but maybe I can live again, even if it looks completely different. It doesn't expect me to be the same, to forget my son. I will never be the same young woman but maybe I do not have to hurt so much. Maybe I can look at his pictures with the joy of remembering him again without the memories of seeing him dead for the first time tangled up in it. Most of the other women on this board, they don't get that.

So I deleted their group, RIP. At least I can throw this needless pain away.

Friday, January 20, 2012

Stone

My husband told me the other day, "I think I am ready to pick out Perry's stone now."

On one hand, I want it to be very well done and unique. I located a sculptor in Springfield, TN that is willing to do special projects. On the other hand, I really hate doing this, because both my husband and I recognize that this is the last thing that we could do for him as parents.

With most things, we had so little choices. With an infant, many choose cremation, which has positive and negative aspects, but that means the funeral industry doesn't carry a lot. Add in the factor that many young parents do not have money, and there isn't a large ninche. My choices for the casket were limited to something that looked like a white styrofoam cooler, but 'could double as a vault' or only a small largely plastic white coffin. I couldn't even choose wood or a color. This bothered me a bit.

Tombstones are somewhat along the same line. I can have a heart, a teddy bear, or if I pay a bit more, a lamb or a valentine day cherub. I don't really want any of these. I want something that is actually art, not necessarily cutesy, but something appropriate for a little boy. I don't want a stone with just words, he couldn't read, and truth be told the stone is as much for Emily who wouldn't appreciate a stone like that either. She wants to touch things, not be told about them.

So far the sculptor has two ideas: one is Noah's ark and the other is a grouping of toys. I like Noah's ark, but I was thinking maybe a baby being held by an angel... maybe even a male angel? Or a baby laying on the ground holding his head up with an angel reaching for him? I don't know.

We've been saving money for this, from kind gifts to money from floor jobs. I know it is a little lofty, but this is oddly enough, the most important piece of art we will ever purchase. My husband commented that it will be the most ornate stone in the churchyard. I told him that I didn't care. I won't get to spend money on preschool, baseball uniforms, used cars, college, weddings, or baby gifts. If it is seen as a waste of money, well, that person wouldn't really 'get' it anyway.







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Wednesday, January 18, 2012

Innocent comments

Today was one of the random days the firefighters teach EMS class at a local high school. I taught this class when I was obesely pregnant with Emily and many random times since.

The new teacher didn't recognize me, but the older instructor did. "How old is your baby now?" She asked.

I noticed the eyes of my crew were fixed. They knew.

I thought time stopped. I scrambled and tried to remember the last time I saw her. I finally decided that it would be easier to play stupid. "Oh my Daughter Emily is 3 years old."

I felt a hand on my shoulder. One of our newest firefighters was there with us. It was a small line of physical comfort.

On one hand I feel as if I have betrayed Perry. But really, she was probably referring to Emily, and I just couldn't answer. I knew if I included Perry, the answer would be oddly out of place "Always 4 months, or he would be 7 months". And I would cry. There in front of 20 something highschool kids I would bawl and wind up scrambling for tissue or the safety of a restroom.

The bad thing about it is that with moments like this, tears are inevitable. I can put them off, but they will always come later.

Tuesday, January 17, 2012

Dragonflys and humingbirds

Emily has been fascinated by a solar powered humingbird light at another 'hideout' by Perry. So yesterday, when we found a dragonfly at the local wallyworld, it was instant must have. As we checked out, Emily chattered excitedly and agreed that Perry would like it.

The past two days have been hard. I find that it is easier to just lay in bed sometimes than to get up and contemplate my new reality as I bustle about. When a bird is hurt, they hide it. When humans are hurt this is what we eventually must do. You have to, or people question your sanity... yet how could any sane person forget a child? How can they really expect us to?

I settle on routine backup number one: when all else fails, call Mom to come get you. Sometimes we go to the Y. Yesterday we went to take Sheila to get her haircut at Wallyworld. And here dear friends it where it gets complicated once again.

I know my hair is getting slightly shaggy. But I don't want to cut it. Silly as that is, the last time I cut it, Perry was alive snuggled on my lap, contemplating the mirrors that seemed to stretch into forever, or watching his Sister spin in the chair across from me.

There. That same walmart that Sheila was at just then. She is in the same chair that we were in, and she is crying and whining at the tangles as they are brushing them out.

So I hate the firsts. But I hate acknowledging that the firsts are all sliding through my fingers like quicksilver more. I hate thinking that it is coming up on three months without him, soon to four, and then worse yet five. Five months will be dreadful because he will be gone longer than society counted him alive.

So then Emily and I go through the checkout line. And I think we are faking it pretty well. Actually just me, Emily sees nothing abnormal about buying a trinket for a baby's grave. This is her little reality now, nothing odd to her. The little checkout lady doesn't even know that Perry isn't alive.

The woman is a little older, a little weathered. She stops and asks if we have extra batteries, because the little rechargeable solar one stops working.

She pauses, says that her friend has one on her grave. She seems to study my face a little.

My heart sinks. That is not a comment you make to a little girl who is going to buy one and bring it home to share with her little brother- the type that breathes, cries, and giggles.

Perhaps many families buy dragonflys or humingbirds, plastic flowers look garish on a backdrop of cheap white styrofoam.

We stopped on the way home and put it next to his little metal nameplate to replace the Christmas tree we took home on new year's day. It stopped working in the car, and I am afraid I should have bought a new battery.

But when Chris comes home, we go together to light a candle. Emily exclaims happily as his little dragonfly changes colors in the darkness surrounding it.

As we leave, she visits the humingbird too. When we get in the car, she cranes her head to watch the two glowing lights grow smaller. They do not get too small to see, our house is actually too close for that. They are just hidden by trees, some that are older than a human lifespan, as we turn the corner.

Saturday, January 14, 2012

Holding on

It struck me today that when I was watching the following video that we try to hold on to our loved ones by gripping tight to the pain. That it takes an incredible amount of faith to try to let go of it a little and grab on God. I know logically that this doesn't mean letting go of Perry. This is ultimately the only way to keep Perry.

When someone lives a small amount of time and we are left primarily with unfullfilled dreams, sometimes it seems life grief is one of the few tangible things left. We don't have the memories to comfort, the knowing that life was fulfilled. We did not get to know them as mature adults, secure.

So tonight I am praying. I am praying for myself, and for my friends that share similar journeys.

Dear God, let me know my son. Let me know him in your fullness as he is now. Let other Mothers and Fathers know their children. Replace this pain and grief with the love we have for our children. Let us know that although they are not here, they are alive through you, help us to see them as they are. Help us to see them as unique, complete individuals and let this knowing take some of the sting from death.

I know this may take a while as you are dealing with a broken person, but you made me and you know best how to fix me.

In your name we pray,
Amen.


http://www.youtube.com/watch?v=I6cdPeYJh0s&ob=av2e


Please do not judge me too harshly. Sometimes the ones who seem to be healing the most just hold the grief tighter where you can not see. Don't compare me to friends or aquantances that look like they 'healed' quicker, they may just not be honest with you. So many Moms say that they fake a full year or two after their children die. The preacher's wife that lost a child may not feel that she can show weakness.

At times submission to God is simply accepting that this is my new life and living. The living doesn't look the same. At times I can laugh now. This is not cheating Perry because he loved my smile. But at times I will still cry. I am still broken, and at times it is ugly. But the raw scabs and scars that mark new wounds are not pretty. Yet they are still a form of healing.

Please be patient.

Friday, January 13, 2012

So easy to fall in love

Today I was thinking back on my children. I know every mother loves their children, but Perry was so easy to fall in love with.

Initially Emily and I had it in our minds that we wanted a little girl. We had dreams of reusing her cute clothing and Emily continually told me 'baby' was a girl. She clung to this belief so tightly she would get agitated if it were suggested or hinted otherwise. She went as far as to tell me "He is a girl!" after Perry was born.

So when Perry was born, Chris was a little worried how the ladies in the family would take it.

I just remember how, as they placed him on my chest after he was born, I looked at his face and was happy. This was who I was meant to have. He was easy to love. He came out with minimal bruising or swelling, and really didn't even want to cry, he just looked around. His color was warm for a newborn and he was incredibly alert.

At first I had to figure out a new baby, but I quickly discovered that Perry morphed into an incredibly amiable baby when I wore him in a ring sling or baby carrier. Instead of making him clingy, it seemed to give security even when I wasn't wearing him. It quickly blessed us with mobility, and Emily, Perry, and I began small outings together and even tackled longer trips to the grocery store. I felt sorry for mommies with babies crying in car seats as they struggled to shop, Perry seemed to look at them curiously from his perch. The only thing that worried me was how soundly he fell asleep in his ring sling, it left me checking him periodically to make sure he was breathing, and making endless small adjustments to ensure he was positioned exactly for a good airway.

As he grew, he was rarely cranky without cause, and was incredibly easy. He seemed to have instant confidence in me, trusted that I would take care of him. He began cooing and smiling when he saw me, and the relief was palpable in his face as I picked him up when I came off shift. I can only remember him really frowning once, and that was when I left him at the YMCA nursery.

He was a really good snuggler. I loved laying in bed with him in the early morning (although he quickly figured out how to warm his cold feet against my tummy) or rocking him in the chair. He molded himself to my chest and it was easy for us both to forget where one of us ended and the other began.

I dreamt the other night that he was laying beside me, in my mind it was early morning, and I had taken him from his pack n' play. But when I awoke as the dream turned disturbing, I realized I was just cold where he should have been. I reached over to gently move my daughter towards me, and realized as wonderful as it was in it's own way, she did not melt into me.

She is no longer a baby.

We no longer have a baby here.

Thursday, January 12, 2012

Karma, the loved/lost, and notes

I was struck today by a thought.

God doesn't protect good Christians from everything bad that happens in life. That is called Karma, and it is not biblical.

Karma is an idea that invades everyday life. Even if you do not call it that, many people of all walks of life believe it, even many that believe that they are Christians.

It seems harmless, but Christians do themselves and others a disservice when they follow this belief. It does not prepare you for the storms of life, and at some point they will come. It does not allow you to help or be seen as available by those who are facing challeging times. It also invites some disasters as this perpetuates the 'it won't happen to me' myth. It allows you to hold a grudge close and say 'they'll get theirs' rather than releasing wrongs and allowing your life to progress.

I guess after praying for the safety of my family and losing Perry shortly after or while I was talking to God, I have been searching. I can't believe that Perry'd death is the act of kind God.

I have to admit that my struggles with prayers began a long time ago. The world lost a very kind man when Adam Burford died. He was a good kid, a good young man, and a good Christian. Unlike other kids who categorized, at 16 or 17 Adam was a friend to any who needed it. I can remember praying for him, while still in denial as to the seriousness of his head trauma, and expecting that God would answer this prayer. After all, if I could see God and Christ through Adam, wouldn't God love him as much as we did?

As much as I believe that God did love Adam, he died.

Years later another person was facing head trauma, but from what I knew of this person they weren't as loving or as kind as Adam. As he/she was spared, everyone cried "Praise God, a Miracle!".

And I had to wonder, was it God or good medicine?

I don't understand how it works. I don't understand if/ why God chooses to reach in and when he allows things to happen as a result of a fallen world.

My son was a sweet baby. There was no good purpose that I can see to his death.

Before Perry died, I had a few Adam moments. I wondered at them. He has been dead for over 15 years and yet here were songs that his memories were intertwined with popping up on the radio regularly that week. As I drove, I just had that feeling like he was in the car with me. I can't explain why I was thinking about him. While I have never forgotten him, I have to admit that as the Mom of two young children I was too busy to actively look back.

So maybe the message is that Karma is a deception and that the real lesson is not always through who is spared physically on this earth.

Maybe the message is that Perry isn't alone, and didn't go alone, as I often fear when I am at my lowest.

But it still rattles me. I pray and do not know if my words go anywhere.

If God could orcastrate things so that Perry did not go alone, why didn't he reach forward a millimeter more to spare him?

I have to be honest and say I don't know. It won't matter to me if Perry is there when I come home, but it matters to me now.

I still have a few people ask what they can do for me. Many people do not know what to say or do.

1) Pray. Tell me what you pray for so I know it's not polite words. I don't ask for them on facebook, but the people who need them the most may not post that they need them. There is a lot going on right now, what you see only scratches the surface.

2) When you want to say words that comfort me, but are at a loss, remember that the sound of my Son's name is lovely to me. Another Mommy who lost her child put this simple request together, I am stealing it from her. Sometimes you need comfort more after the people are gone and when you are alone. A card or letter means everything. If you do not know anything to say, just write "I remember Perry". That's it. You don't have to pretend to know how I feel or find the right words, I am not sure that there really are any. You do not have to write eloquent words. Just send even a slip of paper with them written on it to me:

Katherine/ Christopher/ Emily Williams
530 Knox Rd
Chapmansboro, TN 37035

You don't even have to say who you are if you do not want to.

This is important even when you think it should no longer matter to me, because it is then when everyone else fades away. Parents never fade away, they will always remember their children. No matter how many years or how many other children they have. They remember, they love; they long.

3) At some time in the future I am going to do something with this loss. It might be a safe sleep sack program for hospital nurseries, I am not sure. But I want it to be something to help other Moms, so hopefully they will be spared and not even know it. I'll ask for your help then.

I just can't do a program right now because my focus now is on simple survival. Really. I have actually 'cooked' only 3 meals that required more than simple reheating since Perry had died, it just seems sort of pointless and low on my priorities. Sometimes I eat just because I think it is time to eat, and usually it isn't even that, but the thought that Emily needs something to sustain her that motivates me.

I know this is a sort of wandering entry today, and I apologize. But that is how my life seems right now as I am searching for new tracks and new routines.

Tuesday, January 10, 2012

Sacred Cows/ SIDS

Today I am going to address some sacred cows, and it may anger you, but this is life as I see it.

1) SIDS is always preventable.

Society presents every death as preventable. They aren't. This is something to give comfort and keep bubbles of peace intact. Parents have lost babies while they were sitting upright holding them, in cribs devoid of blankets or bumpers. Some of the advice presented hasn't even held up under research.

This also feeds into the perception by some that unexpected infant deaths are murder. Not true. The public clings to the one story because then they can lie and say that they can prevent their own child from dying.

2) SIDS or unexpected death is never preventable.

Parents cling to this belief because we absolutely want to believe that nothing can be done, sometimes to the extent that if you personally believed you could have prevented your child from dying you are an outcast. (BUT I don't think that the vast majority of  deaths currently classified as SIDs could have been prevented. Even with increasing categorization of infant deaths as suffocation, there is a core that is unexplainable.)

However, this is not to say that we shouldn't teach safe sleep practices, because we could save some babies. A normal baby shouldn't die just because it is left on it's tummy, but the practice of putting babies to sleep on their backs drastically cut the rate of unexplained deaths. If a practice increases survival rates, while it shouldn't necessarily be touted as 'SIDS prevention', it should be taught. Avoiding hurt feelings are not worth any babies life.

My personal theory is that the majority of the babies that die have a protective mechanism missing. Something that when oxygen levels fall they don't stir or react appropriately. I think it is genetic (the ratios of boy to girl deaths are what you would expect if the protective mechanism were inherited on the X chromosome). Here is where it gets dicey. These ratios (SIDS) are also found in many cause of suffocation/choking deaths that are labeled as preventable. This ratio not found in deaths unrelated to airway/breathing.

I believe that there is a possibility that this mechanism is defective to differing degrees, and that these children are more susceptible to suffocation as a result of not responding appropriately to challenges. I look at it kind of like a blood bleeding disorder. Some are so susceptible that they die early on from unperceivable causes that may be internal, others are not affected as much by the disease, but you would never place them around sharp objects. Normally a simple cut would not kill a normal person, but it can kill someone who doesn't clot quickly enough.

I guess I am just tired of feeling like I am getting it from all sides. I think my Son's death was preventable, but I am not sure if every baby would have paid the same price (there were a few earlier incidents that are making me question if Perry responded appropriately to threats, once he stopped breathing in a pool although his head/torso was above water, and while he was aware the entire time, he only started breathing when we rubbed him with a towel). I hate that SIDS parents are fighting teaching safe practices that may have saved my son. I hate that I see so many pictures of similar sleeping environments in pictures with babies, some even worse.

In the end what does it matter if a death is classified as SIDS or suffocation? Is it any less tragic? The repercussions any less other than added guilt? If there is any chance of saving just one baby, why don't we work harder? We will send kids books so that they learn how to read, but will not send parents home with sleep sacks.

We will raise thousands of dollars for a spay and neuter program, but is anyone doing this for sleep sacks and safe sleeping environments? Why is a stray worth more than a child? I love pets, but our society is messed up.

Monday, January 9, 2012

A tough day

Today is filled with reminders everywhere.

The first was a simple post of a Mother bemoaning that her youngest had gotten sick and she didn't wake up (I absolutely get it, this wasn't a silly post). Everyone kept posting to her about Mommy intuition and that if your child really needed you you would wake up.

So do Father's not have this intuition? I am betting that women that have lost a child in their crib to SIDS or other causes would cry out that this is untrue.

I hate seeing this posted all over the net... Beside this facebook post, I read this same sentiment on a review poo pooing motion monitors, and on ignorant threads on various birth clubs.

Oh but the Holy Spirit will....

No it will not necessarily. I am sure that many who have lost babies were good Christians. We are not rescued from all the world's sorrows in this simplistic sense. It takes faith to believe your prayers will be answered, but more faith when the answer is no. God does not promise us an easy life on earth, just everlasting life. Ask any firefighter, police officer, or EMT (or a soldier who has actually seen combat)... they know. It is why they have trouble sometimes with simple Sunday School answers. Many of them do believe in God, but have been driven from churches and Sunday Schools as a result of simple answers that do not match a much deeper reality. I am not saying the simple answers are not true, but there is often so much more to the answer (to see the whole picture) that lifeway stock bible studies do not even begin to address in the hour alotted per lesson.

I can't post this. I don't want to be always be seen as the crazy woman who lost her baby. Society thinks you should shut up about these things. Or rather anything related to your child who has died (don't even say dead... you are supposed to say 'passed', 'always sleeping', 'taken by God', or if you were a kind person you would avoid the topic altogether as to not make the other person uncomfortable). Sure, post something about a narrow miss with your living child, but don't make people actually believe the world isn't the safe place they believe it is or take away the illusion of control.

But sometimes I REALLY wish somebody else would.

And the second was this picture on a facebook post:


Let me start out by saying I have a very complicated relationship with this picture.

Do I believe it? Yes. I couldn't keep going through the motions of life if I didn't. Other Christians have fire insurance, but my house... well it has already burned down. Either all will be made right when I die or there isn't much of a point to life at all. We are kind of like the pig in a ham and eggs breakfast, the chicken might have an interest because they laid the eggs, but the pig is committed.

But this is also the package the funeral home gave me. I think it is titled Safe in His Arms or something like that. This picture is on all the programs, signature books, and even many of the thank yous surrounding Perry's funeral.

It is so beautiful but so soul wrenhing for me.

I don't want Perry in Jesus's arms. My arms are empty.

I wanted him to go to Jesus after a long life, with me waiting to lead him so he would not be so afraid. So I could take him by the hand and we could go in together.

I wonder sometimes if he was afraid with nobody he knew to meet him in that moment.

Facebook was not kind to me today.

Sunday, January 8, 2012

Contrasts

It struck me in church today, and on the way home, that this earth has a lot less appeal to me. I was so happy with my little family. I was content.

But this is the world, it is not perfect.

Now heaven has more meaning to me. Instead of the image I had as a child as something like a big church church service, but with more music and angels floating around... something I wasn't so sure sounded as great as the adults thought, I have a different image that is beginning to take shape.

It is rest, and renewel, here there are no tears or need of mourning songs. Things here make sense, we finally get to see the total of our God who is more than an abstract image. We understand the actions of others, so the hurt is lessened or taken away. There is a new complete vision of our brothers and sisters. We may weep, but perhaps only for those left behind who hurt because they cannot see, or perhaps with simple happiness. And here we use our talents to worship and serve others, some developed on earth and some left withering on the vine there, it is not the static picture on the chapel ceiling of an old nation that gathers dust.

Is this part of a lesson for me then? That we should not be so content with our life here that we do not long to be united with our God and our family there?


PSALM 42,
1
As the hart panteth after the water brooks, so panteth my soul after thee, O God.
2
My soul thirsteth for God, for the living God: when shall I come and appear before God?

I am not nearly as afraid of death. At the same time, I recognize how short our lives are. That while heaven is where our gifts may be perfected, that they are needed more by those who are hurting here in this moment of our time. This is the field, of people you know already and those you have yet to meet. Where broken bodies and spirits cry, and where joy is sometimes made that much sweeter from the contrast.

If I could skip all this pain and not have had to walk in this life's steps, would I appreciate heaven as much? Would we rebel just as some of the angels that could see God did? Would we be fit or happy to live there? Is this contrast of pain necessary?

Saturday, January 7, 2012

Ok?

I am going a bit underground. Lately I am starting to blog and not post a link to facebook. There are things I feel that I only want to share with people who will seek it out. I guess I think that if I can take the effort to pour it out, the least somebody else can do is click one more button?

I keep hearing it will take time for everything to be ok. What is ok?

I'm not mad about this, but lets look at it and examine it.

More functional? Maybe less things become triggers? Progressing forward (not that I really think of going forward positively... I want to go back!)? These things may be possible, someday. Some year. Some Decade? Sometimes they are achievable in small amounts and nobody who doesn't know would not suspect.

But OK? What is OK to me?

Ok is going home and finding my family there. My husband sitting on the couch, typing something that seems insanely trivial to me (these days) about politics on his facebook page, Emily sitting on the floor playing little people. Her little people aren't crying out for other figures to help them, they are rescuing cats in her little plastic fire engine. Ok is Emily getting frustrated because her little brother is laying on the ground next to her and he is knocking over her carefully arranged scene, maybe he is stuffing the cat in his mouth and slobbering copiously on it.

My world here will never be 'ok'. It will just be different.

Friday, January 6, 2012

Little Goodbyes

When someone you love leaves your life, you are left with a long series of little goodbyes.

Today I set out the formula that I had accumulated as backup for Perry and am shipping it off to my SIL. It expires next September. I can see how people become hoarders, because it is not fair that I have to get rid of it. At the same time you have to let go of the pain to make room for more blessings in my life.

I am arranging for another drop off of stored milk to be hopefully used by a milkbank for premature babies, but even this is not so simple, because some banks do not accept milk from a Mom with a deceased infant. This is just one more way society whispers I could have killed my baby, although I am sure and remind myself that through this particular gift of love I made his short life better with less sniffles and sickness. We never had to take Perry to the Pediatrician for anything other than a well child check up. Sort of sad and ironic. But this was something that was meant only for him... As nice as it is that maybe I can help another baby thrive.

I am trying to prepare myself to say goodbye to his pumpkin.This would have been so easy to do had he been here, but is oddly, incredibly tough.

But here they are. The little reminders he is gone.

Slowly, I am trying to find ways of replacing these transient things with other meaningful objects. I made a book with many of his photos, and a small silver charm bracelet with pictures of my Daughter and my Son. I do not want to say Goodbye to him. I just want to say "Until we meet again...". This is easy and hard to do, within the same breath.

Thursday, January 5, 2012

Remnants

All the main baby armada has been packed away in Emily's closet. The jumparoo, the sunshine chair, and his little swing are all hidden away in darkness.

But the remenants are here. Some parents find pacifiers everywhere, I find little socks. When I am searching for remote controls, I feel a small wad of cotton cloth, and cry as I pull it out. I try to smell for him, futile effort now, but I still open the tiny sock and hold it to my face. Sometimes I put my finger inside, thinking the last person to touch it before me was Perry.

Or as I reach for a candle in the console of my car, I realize the lighter is not in the bag and I rummage through only to find my emergency pack of diaper/ clothes change that I had updated just a few days before he died. If he were alive, he could still fit the onesie inside.

The saddest remenants are from the days after. A small memorial program with his smiling picture on the front, I found this under my daughter's car seat. The wrinkles in the tarplike protective cover in the back of my explorer, some are leftover from the small coffin as it was placed in the back. The Child Protective Services pamphlets on the printer in the spare bedroom.

Then there are the living remenants. There are the people moving around in our house, the smaller version of our family. There are also bluebirds.

The bluebirds (or bird) were frequent companions on our walks outside the house. I do not know if Perry saw them as well, but I imagine the flash of blue with a red breast must be hard to ignore in the green canopy of woods that surrounds our house.

The day I prayed my Lazarus prayer, I stared at his grave in the early morning, the sun barely rising. No ground was disturbed. As I walked towards his small swell, a bluebird flittered away from his crook that holds his lantern. I have seen this bluebird several times now around his grave.

How wonderful, I am sure that I hear people saying. A sign?

But I can not know this is a sign or grasping for comfort.

I read that Jesus wept for Lazarus. And I think it is too simplistic to say as Christians we should not morn.

Of all, Jesus should have cried the least, how clear the plan must have been to him.

And today I was actual struck by the irony. Yes, Jesus wept but he was able to bend the rules of nature and bring his friend back.

Am I less his friend? Where is the sense in raising Lazarus, a man who had lived his 'natural' years, but leaving a child cold who had yet to taste his first true solid meal?

Where is the fairness, God?


Tuesday, January 3, 2012

Dreading

The event that I have dreaded the most, beyond driving home the last few miles on Nov. 6 and not wanting to open the door, and burying my son, is creeping closer. It doesn't change anything, but I dread it... at the same time I am afraid not to know and create new horrors in my dreams. We were given the option of not knowing, but when you are a parent every detail of your child is important to you, even this.

In TN they do an investigation and mandatory autopsy on every infant death. They come into your home and examine everything from the settings on the thermostat to bagging all the bedding, ask the parents to explain how they found the child. This is followed by the visit from Child Protective Services, and I kept the brochures to show the fire departments what the parents will experience next SIDS training. To be given brochures like this at a time you are at your lowest is a kick. Have you ever been asked to fill out a form of what relative might take your remaining child if she is removed from your home? You are already doubting every decision you have made, and it is like someone saying 'yes you are guilty, if you were a good parent your child would not be dead'.

But can I argue? Is this not the worst failure possible in parenting?

I can remember being asked his weight and heigth, his birth date, his medical history. Here in the midst of the ambulance and Perry's death I struggled to find his baby book to answer questions my mind was strangely blank on. This is not how I imagined looking back with this book as I had first entered this information.

I lost an entire memory card in the frenzy of cleaning for the CPS visit that followed after his funeral, pictures and video fragments I will never get back of my children.

I vaguely remember them saying the average time is about 6-8 weeks to hear autopsy results. That time is drawing to an end. Perhaps like CPS waiting out of what they perceived as kindness, the powers that be think that this is somehow kinder by putting distance from the Holidays.

Do they not realize they are irrepairably ruined already? Will I ever look forward to this time frame with happiness again? Or will it forever be linked to this time? Will I ever pick out Holloween costumes with happiness or will I begin withdrawing to myself? Will I always resent the obligatory Santa visit because we are missing a child on his knee?

His Giraffe jacket is hanging in Emily's room in the same position I left it, the arms are still inside out from where I pulled the jacked off his little frame about two months ago. His pumkin is on the porch, it is beginning to rot where Emily's is still hard and perfect.

I think about harvesting the seeds and trying to grow pumkins from this remenant next year, before throwing the majority of it into the compost with his flowers.

They also stated it could be as long as 6-8 months.

6-8 months of dread. Wondering if the truth is available at all, if it is as horrible as we imagine, and if we will ultimately be able to handle the results.

I feel like I am outside the funeral home again, afraid to go in the first time. And the nightmare just continues.

Monday, January 2, 2012

Anger as a drug

I am back out of the anger phase for right now. But can I say that anger is as dangerous a drug as any to a mourning parent?

It is. It is a relief. A brief respite from this 'missing'.

But it does no good. It has to be controlled, and there is a real danger in losing oneself to it.

I have to say that sometimes it feels well placed. At times it may even serve a function, because I feel so passive when I am in my darkest it might be necessary to say, 'you don't know this but you are hurting me, KNOCK IT OFF'.

People are so naive they cannot comprehend sometimes. This is their world. Their families are the nexus. Their needs, their comfort. I was one of them too to a degree. I am sometimes one of them.

And they are right. This is their world. I am just living in it until I can go home.

But back to anger....

I see familes who direct it at responders that did their best and the familes grab onto as a lifeline, or focus it on Doctors who could not do the impossible. I know that anger is double edged, it feels good to attack someone with this crude knife without a handle, but it cuts your hands. It leaves your wounds open when you are unwilling to let go and the knife slices your fleash more the tighter you hang on to it. Healing becomes almost impossible.

But it is a drug. You feel instinctively this wounding anger and it distracts you from the sorrow. It feels good, but like any narcotic when you come off the high your life has not changed.

And I think of Perry. Of all my happiness surrounding him when he was alive, and I know this is not his legacy to me.

Sometimes I have to put the knife down. Try to open myself to something better, and pray that I can find something positive to take the place of pain.

This is Perry in the little zebra sleeper that he and Emily both wore home from the hospital. It is something I love that makes me happy, it is in my husband's drawer. I do not want to completely replace the happy bright spot in me that is Perry with anger. Anger removes the pain from the missing, but blots out the person you loved. I can't feel the joy he gave me when I am mad.

But then, like any aspect of mourning it will come again, unbidden as it may be. I am going to have to find more versions of plastic 'pop bubbles' to keep on hand. At least maybe then I can put a handle on the anger and keep it from hurting anybody.

Sunday, January 1, 2012

A New Year

I have a hard time with the new year. I think I had someone say that I would be happy just to forget 2011.

But that's not true. I'm not saying that it has been an easy year, but it has been one of my happiest and my saddest intertwined. I was so incredibly happy with my family. I met Perry in June, and we enjoyed our time together. It was a good birth. It was a good beginning. I got to see my Daughter become a very good Big Sister, and my husband smile as he held a child on each knee. He said we now really felt like a family.

The rest is a really ugly blot of pain. It sucks that this pain will continue longer than he lived. I hate that it threatens to steal all the happiness he gave me if I let it. I hate that all searches for meaning just leave me more confused and wounded.

There is a reluctance to move into 2012, but what is it except a paper designation? We like to section our lives into neat little time frames, but it is not just a second, a day, a month, a year... It is a continous line stretching before. We tell ourselves if we lose our pain, the only seemingly tangible thing we have left, we will forget the people we love and that thin thread will snap that connects us. But they are still there, it is not broken.

The hard thing is that we are human and live our lives in such a finite frame. Our minds cannot comprehend. I wonder sometimes if we have such a hard time comprehending death becsue we are wired for eternity? This mind does not fit this fragile body, and when the two conflict it can be incredibly confusing. Our soul says we love them, they cannot leave us... but our brain that is composed of tissue and logic screams out death.

I read stories of people who feel they have been somehow touched and that they know that their loved ones are ok. I hear others say the bible clearly states X and Y. I have come to the conclusion that I will not seek out people to tell me what I want to hear or do not want to hear. I will also no longer listen to people who say what the bible says on a topic. I will read and find out for myself. Sometimes well meaning or ill meaning, they are incorrect. If the still small voice whispers to me directly, that is the only way I will believe. I need a direct hand to lift me out of this darkness, not a reflection in a mirror held up by another.