Putting Your Family First

This is a hard post to write.

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

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

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

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

My survival.

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

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

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

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

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

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

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

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

To us nothing is fair.

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

Think about what you say.

Dear Parents

Dear Parents

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

There's a Baby Missing

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

And I will never be the same.

Compassion fatigue? Mourning?

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

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

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

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

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

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

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

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

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

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

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

So what is it? What do you call it?

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

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

Pictures

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

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

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

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

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

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

You just get tired of lying.

Photo Card/ Perry's Birthday Project

Safari Friends Cocoa Baby Announcements

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

View the entire collection of cards.

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

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

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

A little alive in us

I was having another one of those days, another Mom at compassionate friends was talking about how wonderful it is that her child's organs are still alive in other people.
Here again, regret. This was not possible for us, and I really wish it had been. I wanted something good to spring out of all this sadness.

The meeting was good, but I left feeling a little battered. It feels like someone has lanced a wound. Necessary, and much better for it later, but still pain mixes with medicine.

Then I found this link (ironically through a birth message group I got on when I was pregnant with Perry- I almost deleted them from facebook but paused and read one last post first ):

http://boingboing.net/2012/01/03/cells.html

I researched further and found information that women who have heart attacks or damage during pregnancy or after sometimes have healthy new tissue with the genetics of their infants in the area that was damaged. There is even supposition that maybe this tissue could also explain why Mom's brains actually grow in certain regions while pregnant.

It's interesting.

And a bit comforting.

I let my mind wrap around it. Perhaps there are many of these cells- Perry's, Emily's, and the others, still alive in me. I carry bits of my children within.

I wonder how much more science will uncover about our bodies. How much more they may never even learn.

It definitely makes you wonder about people who describe pregnancy as a parasite in a host rather than a relationship. And yet here an embryo or fetus begins to give back, before even birth. I think of the twist of fate- that some women who have aborted children may have their hearts literally healed by them without even knowing it. Perhaps they were saved from permanent brain damage after an accident (is this why women have better outcomes after brain injuries?).

Maybe this is what we are called to do in life. Give even when we are rejected or when life takes away what is most precious to us.

I know life is never as simple as portrayed. But how wonderful the hidden complexities can turn out to be, even if we do not know about them or want to.

Easter

What a bittersweet holiday. A promise to Christians that we will see our brothers and sisters again through grace, a whisper that I will see my sweet son.

But the families line up outside, little girls in satin dresses and white hats, and the babies in stiched cotton, pantsuits for little boys or maybe a clip on tie. Shoes new or shined until they gleam. Cameras and cell phones raised by willing volunteers to capture entire families- and we can no longer do that.

 I see little outfits that I would have bought for Perry to wear, feel a tightness as I go down the easter isle and see a little toy, or the babyfood isle that is parallel to my journey to the milk and see the easy dissolving treats I might have bought for his Easter basket. No cute 'my first Easter bib', that I set aside from Emily for him to wear with the matching rattle.

We buy flowers for a grave. There is an irony in that the only things I can buy for him now, a little boy would have little use for.

I almost always buy an extra, I avoid sibling rivalry even now. I want no resentment for Emily that Perry is dead, when somehow (miraculously) I did something right as a parent and largely managed to avoid it while he was here and Emily loved him. The biggest smile, the glowing face, of Emily in my hospital room as she greets baby is incredible. I see it in pictures even now. No Christmas had brought it out before, I never knew a child could glow and beam. Especially one normally as serious as Emily.

(In good moments I imagine this will be the smiles of reunion in heaven.)

The day before Easter is another day to us. Remarkable only in that we are resuming talks with the artist for Perry's stone. We cry a little as we discuss how tall he was- more than 27 inches because that was the Doctor's visit at 4 months, somewhat less than 32 because that was the size of the coffin. But not much, because they left his legs somewhat tucked as an infant would naturally. But we don't fully explain this, but we both know each of us understand because both my husband and I use the same two numbers.  Really.... So when I talk about getting his last height and weight from an autopsy report, I have to wonder if it would be any less horrendous than how we arrive at our guess now. We think 30 inches.

What horrible thoughts everyday life stirs up. Your memory pools may run clear in comparison, sometimes we look normal. The silt is stirred up, and it turns jet black.

We cried a little when she asked us how he died, but my husband reassured her not to worry when we cry. Because when we cry we remember how happy we were.

Please God, let me be that happy again.

Stress and Life

So today is one of those days. I want to stay inside my house in a little ball, but my daughter will not let me. She is currently in the process of dragging out every toy she owns. She has knocked the vase with some of Perry's dried flowers down and I caught her standing ontop of my work tote bag, pulling the frame with Perry's pictures off the wall a bit. She was looking at the back as if she was trying to find him behind the frame... so I had to intervene to keep her from bringing it down on her head.

Today Perry has now been gone as long as he was alive outside the womb. I thought I would be very angry today, but I am mostly just sad.

I have seen many updates lately on blogs of women that have lost children. They almost all seem to be pregnant and all is going well, no miscarriages for them. I am really torn- happy for them as they need to experience something of life again, and a little melancholy. Why did my child have to be taken? I went through so much to have my family and there is no easy Phoenix baby for me. How can God allow a little boy to be taken that has cost me so much emotionally and physically just to get him here? I loved him, he was no neglected child spared from life. He was the fruit that was hard won from rocky ground. I can plow this ground again all I want, but it may not yield anything more.

Meanwhile my 12 year old niece is being admitted to a treatment center. She has had a lot of problems and the kid hasn't had an easy go of things.Some of which she has sadly created unknowingly by her own actions, even though she may not be able to understand cause and effect. It is important for kids to feel that their parents love them, and while she has a Grandmother raising her, I am sure there is a void there. The combination has been bad. She made a threat that had to be taken seriously and said she 'wants to be with Perry'. Whether this is attention grabbing or a result of her mental health, or perhaps everything combined, we do not know. I just hope that in this center they can throw all the pills she has been prescribed out the window, evaluate her for what is going on from a new perspective (I just don't think slapping ADHD on every issue with children is addressing what is going on with her), and be able to really help her. All the counseling and pills has done nothing or is no longer working as she is reaching puberty/ recent events. I hope they can help her. I hope my Mom gets enough of a break that she will be able to clear her mind and be able to plan and deal with whatever is the next step.

A worker asked if my husband and I could take her for a bit to give my mother respite. we are, as odd as this may sound, the most stable family in her circle. And we can't... I feel a lot of guilt, but I feel like my husband and I are both struggling to swim and to keep Emily pointed in a direction (hopefully towards a shore where we can all find safety). We can't take her. I think the drama would add the last rock to our feet and could drag us all under. I also have the residual memories left from growing up... some of this feels like deja vue (sp?). Emily clearly loves Sheila, but I would never want to put her through the same things I went through. Bringing Sheila in would be inviting CPS into our home if not from immediate circumstances, from future actions that will be inevitable from a clouded child. All good intentions aside, CPS destroy as many homes as they salvage. Sometimes a child with special needs will draw attention even set in a good family. Short of sitting in the same room every second to watch and control actions, future drama seems inevitable at this point. I want the last time we ever have dealings in our immediate nuclear family with CPS to have been Perry's death. I want them as far from me and my family as possible. I can't do that if I take my niece into my home. I feel like I will be starting the cycle all over again.

But my niece is worth saving. While she can't understand consequences or think ahead to the next logical step, even though she is prone to bursts like thunderstorms, when the clouds clear there is a really nice girl in there. She can be kind and loving, everything in complete contrast to just a few moments ago.

She is surrounded by clouds ,of circumstances not of her making, and of her DNA. I hope she will not be lost in them forever. I hope that the right treatment and medications will pull her through.

5 Months

Almost 5 months you have been gone
about as long as you lived
I want to blame
or know why
but nothing will bring you back.
People begin to say nothing
perhaps they think I should be over you
or the awkwardness is too much.
I find it harder this week than in the past month,
your loss seems raw today-
perhaps I know that you are gone
no platitudes can fix that.
Only faith gives me hope,
but it is so bitter to find you in faith
instead of my arms.
You were my son,
the one who smiled
when others around you
cried in self pity.
You were the only good change
in years of stagnation and disappointment,
you showed me a bright present and future.
All that has changed now.
All the silly things that seemed important are back in line,
but my bright star has burned out.
The room is even darker than before
now that I know what should be.