Wednesday, February 29, 2012

Rainbows

I called Perry my Rainbow baby. Here is the definition.

Rainbow babies: In some circles, babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm. "Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.

Perry was born after three miscarriages. He made everything feel as if a perfect God were indeed in control.

The irony does not escape me, I do not need to write on that.

After his death I prayed for God to give me a sign to know that Perry is with him. I prayed particularly for a painting of Perry held in Jesus's arms. There are many stories where parents who have lost a child or struggling in the hospital are given paintings or artwork depicting their child by a cross on a shore, or in a hospital bed surrounded by angels. I really wanted this sort of miracle. Later, I even heard of an artist who would do exactly this picture for me, has for many parents who have lost a child. But I didn't think you pay for a miracle.

I tried to commission a stone for Perry (angel holding him). The artist backed out, but is reconsidering. It was pretty depressing to think I couldn't even pay for something similar to it. Emily was very adamant about it being an angel, so this will be for her if it comes about.

I prayed again and wondered why the answer was no. It struck me that God was working on the person. Either they were saying no or didn't think they had the talent. I prayed again- maybe another artist would take it up.
I read in the bible (Revelations 21) that the foundation of the city walls in heaven were made of sparking stones of many colors. I thought of Perry as my rainbow baby. Rainbows seem to be a really common theme for me these days.

Then I was looking in my locker at work the other day (you put what you really value hanging up in your locker). There was a crude attempt at some of Emily's first artwork. She had drawn several sheets of lines in crayons. When I asked, she said they were rainbows and was very assertive that they were for me.

Rainbows...

Maybe not my picture of Jesus, but a pretty effort for a three year old. It could be the result of the rainbow episode of Mickey's clubhouse she used to love watching right before Perry died. But sometimes God can work through seemingly unrelated minutia.

Maybe my picture of Jesus is still out there somewhere, will come to me at sometime in the future. But my rainbow is pretty good, don't you think?

For Moms/ Dads who have lost children and supporters

It ocurred to me that someday a parent (or a friend of a parent) may be reading this who has just sat down after the emergency responders leave or after coming home from the hospital. You are crying and screaming, or maybe you are quiet because there are no words to talk about the depth of what you are feeling. Your child is gone, but your love is still there, and pain swells to fill the void where your child should be. Your next step once the stunned silence sets in, before family and friends surround you or after they leave, is to search on the computer for some sort of support, cause, or meaning. Maybe hope that someday everything will be 'ok' again. This might be how you found me.

If you are a friend, there is an ebook here:
http://corashopesanddreams.org/wp-content/uploads/2012/02/babylossebbok.pdf
I want to sincerely caution friends and family on attempting to force their friends 'back into life'. Many times families who have lost children may have PTSD. They may need to work on the most hurtful aspects on their own time frame in a fashion that they can control. While you may see the need for them to do things such as accept your baby because it is a part of life, sometimes when they look at your child they may be flashing back to the first time they saw their child dead or their mind fills with the images of what should be (particularly true if your child is the same age). Let them know you understand it may be difficult and ask them to let you know when it is ok to introduce or reintroduce your child. Understand that the meetings with your child included may need to be short. Always provide a way for them to escape safely, and consider how long they can handle children. You may need to leave early or provide a sitter. It is not reasonable to expect them to always be the one to leave in social settings, although that is what is typically expected. This sets them up to be viewed as antisocial and makes them feel intense alienation that may permanently affect relationships with friends and family. This is different with every woman, if your children played together they may not want to see the other child at all or it may be a link to their lost child. In family situations (such as weddings) where other children are included in photos, they may not want to participate (to them there is always a child missing and no photo is complete) or if they can, it would be exceptionally kind to offer a way to include an object or picture of their child.

To begin with, look at this as a process with no set path. You will feel like you are making progress, only to be thrown back into raw pain the next day or the next minute. Also realize that this path will not erase this experience, no matter how much we wish, but it can lead you back to loving and happy memories of your child again. I am told not to be afraid of forgetting, because we will never let go of our children in the way that matters.

I am not far enough along to tell you what this journey will ultimately look like. But I can tell you that the first step in regaining something, is to reclaim your child from his/her death. What I mean by this, is to seperate that horrible last memory from the total of your child's life, whether you were blessed with many years or only time spent as they moved in the womb. You may need an experienced counselor to do this, or a stable support group. Avoid professionals if you find they really don't know what to do with you, and groups that make you feel worse rather than better. Sometimes the right group or support early on will be a different one than later. If you get to a point you don't want to talk about the death, but want help remembering your child's life, you will find that you outgrow some grief support groups. I also encourage you to reach out to groups when you are ready. It will look something like this: everyone has gone on that previously supported you, but you do not feel ready to move on, or perhaps they are there but nobody knows what to say and you need to talk to others who understand first hand.

Don't completely rely on your spouse to fill every need. You have both been critically wounded, but each of you will need different things. You don't become a Doctor after being in a wreck, you can't become a grief counselor overnight after you lose a child. Supporting each other is vital, but you can't 'fix' each other.

When you begin to look for support, look for appropriate support. Many people will throw you in the grief category, perhaps even the miscarriage category, because they don't know what to do with you. But it isn't that easy. You haven't lost a Grandparent who lived a very long life, or an early pregnancy mainly intermingled with visions of the future. Some groups will even put you in grief groups with divorced people, but you cry out that you would be happier just knowing that the person you love is still somewhere on this earth.You also aren't only grieving, you have faced a horrific event- finding a child you loved dead, perhaps facing futile hospital attempts, or maybe even never getting to take your child home. Grief mingles with a lost future and 'that day'. 'That day' can be post traumatic stress (PTS), so if you find yourself shaking when the memory is triggered or having a violent rewind of events, it might be necessary to find somebody who specializes in PTS. PTS and the what ifs will steal your child's life, the happiness you had, and should still be able to have one day (when you remember with happiness a glimpse of his/her face), from you. Eventually when your child's name is said, sadness should not be your only emotion.

I also want to caution you to be very careful of books and groups. If you believe in God or Heaven, seek out support that will affirm you. Your faith in anything good will be challenged, you will feel a total lack of control, and you are vulnerable. If you think there is a God, wondered, are open, or even are willing to try, seek him out even if you have never had a relationship before. It is absolutely ok to be angry at this point, if you are mad let him know it, he has broad shoulders and can take it. Even this is prayer as long as you allow quiet time for an answer. It is when you do not pray at all that no communication is flowing. Although you are angry and hurting, or lost in the pit, if you stop and listen you may hear back. It may not be at that moment. The answer may be no. But you are heard. Support from people can be addictive, but it will fade. Seek out something permanent. And yes, it is ok to be a Christian and grieve... there is no need to fake happiness when your world has crashed around you. One day you will smile again or more often, but your primary business is mourning, and it is hard work. Maintaing appearances steals energy you will now have in short supply, and as a long term strategy does not work (although it can be helpful in an unsupportive environment in the short term, just enough to get you to safety).You may find that you have new views in conflict with what you have been taught- as long as you pray about it and receive an answer, find no conflict with the bible, I think what matters most is the relationship that we have with God and not the rules created by people. I do give psychics the fish eye, primarily because I know what I want to hear so badly but do not want to be misled by someone with ill intent (or misled themselves) who sense that. I try to ask God directly for comfort.

There will be times you don't want to be here. You may not be suicidal, but you may want to be in Heaven. You need to recognize that your child lives on in a strange way through you. The way you are positively changed ('the glasses') is part of how your child still reaches out into the world. Live in such a way that your child will be proud of you being their parent. I also gain a little bit of comfort in knowing that the half of me that I gave to my son is still alive in me, and the other in his Dad. His sister carries pieces. When the darkness hits, hold your hand out, seek a close friend or family member who will come and get you. This is when you need to see if all the people that offered support are available- so many people do not receive the support they need because the people do not know what to do... and you do not ask! (And here Dear friends is where you can help.... call once a week or every couple of weeks and just say "I am thinking about you, what do you need?". Visit. If the house is a mess, this is par for the course. If they won't let you help clean, offer to hire a cleaning service. It may be easier to them to allow a stranger to help with this than someone they have to face again.

If your child is on life support, please consider organ donation. I had a friend in highschool whose parents, family, and friends gained a great deal of comfort in knowing that a lot of people were living as a result. It was nice to think that something was still physically alive. I was not given that option, and I wish it had been available to us.

You will also receive or see painful reminders of your child's death. Sometimes one parent will hide them or take care of them alone in an effort to spare the spouse. Ask before you start getting stuff what your spouses preference is, it can lead to a feeling of being excluded if you do not. The important stuff we talk about, the less important things (such as insurance bills stating nothing are owed, or the SAM's club circular with safe sleep advice) I deal with appropriately on my own, and vice versa

Be careful of making large permanent decisions during this time frame. A home that now frightens you when you are alone, may become a haven where you remember your child laughing or smiling later.

I do want you to know that it is ok to get rid of the most painful reminders of the death, but be very careful or purging (or allowing others to) things that remind you of your child. Right now everything is painful because you feel the loss, but as time goes on, first you will find yourself touching or smelling things (although painful you may feel an overwhelming need to do this). Consider storing things in closets or nearby if you do not want to leave them out. You may even find your need for seeing or hiding things changes from time to time and that is ok.

There may or will come a time when you are ready to go through things. I encourage you to start with the obvious reminders of the funeral or death. keep what comforts and get rid of the rest.With other things ask yourself if you want to use them again... Are you planning on more children? If so you can think of these things as hand me downs that a normal sibling would get. Or maybe you can't. Either is ok. I don't personally know about getting rid of things, as I can not part with anything yet... I am not placing a timeline on it right now. I have asked family members if there is anything in particular that they want, as I would rather have another person treasure it than it remain in a box or perhaps later get thrown away. Consider donating to a woman's shelter or other worthy cause such as a crisis pregnancy center.

Belongings are also something that may be a source of conflict over different ways of mourning. When you are ready to put them away, how much, and what to keep. It isn't easy. I have let my husband get rid of the really painful things for him, but for now I am like a hoarder with the rest. It's not unusual for cribs to be left exactly the way they were for a year or even longer. It is not unusual for cribs or pack n plays to be the first to go, or even be pummeled.

As the transient reminders of your child fade, begin to replace them with more permanent things that give you comfort, and be creative. Pumpkin from holloween, scavenge the seeds and plant next year. Clothing: make a quilt or ask someone with the talent to help you who has asked what they can do. Create a charm bracelet with your child's picture (and any siblings) on an online store, create a book with all the pictures to look through whenever you need it. Dry some of the flowers that were sent, if they comfort and do not make you sad. Friends- consider planting a tree instead of flowers, the parents may prefer something more permanent.

Set rules for yourself to live by. These rules may look something like: If I am doing something I would do with my son here, it is not a betrayl, but honoring his memory as I remember him doing them with us. Laughing, eating, going to the store... they are all ok.

Take care of yourself. Eat. Drink. Get up. Repeat. There is a point when I literally had to make a concious decision to live, because quite frankly nothing tasted good and even water was not on my mind. I had to pick out people I loved and tell myself that I owed it to them to keep breathing. Start exercising when things quiet down. Set up an appointment for your annual physical. Grief is really hard work and can wear you down. Don't brush aside abnormal things as related to grief... I sincerely believe there is such a thing as dying from a broken heart. Your body may even physically ache, in your chest or your arms where you held them... You may be cold a lot. I have a pair of really loud socks my Mom knitted me, and on days I need courage I wear them.

I can't overstate the value of a friend or relative dragging you outside or to the gym to exercise. It does a few things. It forces you out of bed. It releases endorphins that may help pull you out of the saddness for at least a short while after you heal a bit. It is an ideal time to start new habits and reshape yourself. You may even get a much needed boost of confidence as your body changes for the better.

I do have to warn you that the first few times you work out you may find yourself crying. I have heard one person say it is sometimes painful once your body and mind begin reconnecting during this time. Exercise helps the process along, and if you begin crying in the park on a sunny day or on a treadmill, it is absolutely ok.

Going to work the first time is hard. I carry my son's sock in my pocket, and wear a small pin with blue footprints on my coat. It makes me feel like he is there with me when something happens that is tough. I also wear the pin because I suspect that other parents who have lost children, infants in particular, will recognize what it means. We have gained nothing from this pain if we can not at least support each other. I want there to be a cue if another Mom or Dad is having a rough day and needs to talk.

There will be times in this journey that it seems like yesterday your child was here, or that they are just in another room. You may find yourself counting them on a form for a hotel on an upcoming vacation. There may be times your mind can't process everything and it tries to default to the time before you were pregnant (He seems like a dream but the tree planted in his memory is outside my window). It is all normal and doesn't reflect how much you love your child.

Do not be surprised if you feel like you are a new person. You are choosing what this new person will look like. People that have lost a child are either the most empathetic or the least, and this is up to you. You can choose to keep the pieces of your old self that you like and blend them with the new (that is worth keeping). Keep your hard earned glasses (you will now see people and wonder what is going on in their lives, asking yourself why they are cranky or sad), your new priorities, and the recognition that a lot of things people place a lot of value in are just plastic junk. Try to weed out gradually what you do not like. You will never be naive again. But you will never take people or things for granted if you choose to remember the hard lessons. Regaining a sense of control is one thing I still struggle with, I do not know how to balance the realization that bad does happen with faith. I feel a bit off kilter, like the scales were overturned.

With this new person you may find that old friends drift away as they expect you to be your 'normal' self. But in this void you will also find new friends with similar values, perhaps who have walked a journey that looks something like yours. And it is ok.

When you feel like you are alone, realize that you are actually incredibly normal for those going through something horrendous. Don't be afraid to reach out.

I can't tell you that I have and do always walk this path as well as I feel I should, but I hope that I walk through grace.

God bless you. This is and will be a difficult journey to walk, but you are never alone if you chose not to be.

Feel free to write any questions you have, and I'll answer them. If you need immediate help, please call first candle at 1-800-221-7437.

Monday, February 27, 2012

Workings

This was a very nice academic post. Unfortunately I have found that when I see the foster baby (because she was announced at my house the day of a wake), I see my son dead.

So I am seperating myself from his family. I need to do what I have to do to keep walking this earth.

So yes, it is not bright n' shiney.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God is softening my heart. Everywhere I look I see articles and books on adoption.

It hit me today that this may not be because an adoption is in store for us.

I have written that I do not resent babies as I did after my previous miscarriages, that I do not deliberately try to avoid them. But if I were to be completely honest, this is not true. There is one little girl that I did not want to meet.

Not because of who she is, but of what she should be. What she is not now.

We were considering going to Disneyland with my sister and brother in law. This meant figuring out how to balance rides with the needs of a baby. While Chris wasn't sure (we were still trying to keep a business going), I had deliberately picked a couple groups of dates off in the summer. In the past we had gone on vacation with Laura and Mike, and I really enjoyed seeing them without anyone being locked into going to Lovington or Nashville. I worried about it being fair to ask them to hold Perry or watch Emily to go on some of the more advanced rides.

What I did not know, and what is part of the should have beens, is that Madison was in the works. Madison was about the same age as Perry, and is in foster care with Laura and Mike now, with the hope of adopting.

I knew the background of most of Laura and Mike's struggles to complete their family, and they knew it wasn't always easy for us either. Maybe it was a huge struggle for them to hold Emily and Perry when they were little, I do not know. But I love them for it. I laughed at Perry in his button up shorts and plaid pants, he reminded me of Uncle Mike, both with more laid back personalities. Emily and Perry both seemed at ease with them, and frequently napped, snuggling into curves of their chest in the way only a young baby can do.

Madison stings so much because we would have definitely gone to Disneyland. It might have been the start of a long string of visits with two cousins to play with (and annoy) each other. It would have suddenly seemed that the world was right again, that all things work towards good. We would have taken turns with the kids, and quite frankly the 'advanced rides' wouldn't have mattered. It would have been a celebration. The first time for Emily, Perry, and Madison. The first to go as complete families.

Now I envision well meaning church ladies telling my Mother in law that God took away Perry but gave them Madison. I see it in my mind and I become furious. I wish I could say that in reality this isn't going to happen. Unfortunately people do not get that every person, even little ones, create a space in this world, and when they leave it, nothing fills it because nobody else will ever fit the contours they carved.

Madison and Perry should have been playmates. The children should have played together, slobbered on shared toys as the adults foolishy worried about germs. Cried about toys, blankets, and parents they did not want to share. Tugged on each others hair and squalled at imagined slights. Been fascinated at another person who was their size in their worlds that were largely populated by big people.

So here is the message I got- It is important to accept her as I would any other smiling baby. That the most important background, beyond culture or genes is that we are all in the family of God. To take and accept her wholeheartedly for whatever time we are given.

I guess I was struggling to fit her in my new world context where Perry isn't physically here, because of how happy we should have all been together. I also struggled with how to fit a child in who can be taken in the blink of an eye.

Yes any baby can be taken from SIDS or by accident... but the odds are in your favor. However, the amount of hoped for adoptions that fall through in the public relm of 'the system' is frightening. Adoption is as precarious as any high risk pregnancy. There are no guarantees, especially in a society that is set on maintaining parental rights to the extent that children are often half grown and bounced through a series of foster homes before action is finally taken. I have realized that we need to value and enjoy her with the understanding that our time together can stretch through a lifetime or be cut short from workings beyong our control. Would we have loved Perry any less if we realized our time together was short? No. The time with Madison, whether measured in months, like Perry, or in years should be valued. If they are to take her away, her time with our family should be no less meaningful than if she is to spend her life with all of us. This time, whether short or long, is important to her.

I still can't say if my rule of no baby holding will stand firm. Perhaps it is a little childish, but my maturity has been stretched thin. In a way it is like saying I am going to hold my breath until God gives me another child, but the other option means facing that Emily may be an only child (here) again permanently.

And I'm not ready for that.

Saturday, February 25, 2012

Seeking Dream

I dreamt I saw an angel. The angel was wearing normal clothing with dark skin, at first I thought it was a man but it seemed amorphous and shifted easily into a woman. Her eyes were dark brown and her hair was dark, straightened and cut just below her shoulders. She didn't have wings and looked very normal, a slightly full face that while not unattractive, would have been very unobtrusive. I sensed I could have very easily passed her already in my day to day life and not noticed her. Or perhaps had been nice, but not really focused enough to get to know her or care beyond what I knew superficially. That I had almost certainly had as with so many masses of strangers passing by us each day, entering our lives for only seconds or minutes in the periphery of our lives. (There was a guilt in this like I should somehow be intimately interested in and caring for every soul that passed by.) But for some reason I just knew who and what she was.

She wasn't happy or angry, almost had the attitude of a government worker who wasn't soured but not extremely joyous.

I begged her to bring me to my baby, to let me see him.

I followed her over grass into a neighborhood. There was a large formal two or three story brick house and in the front was a small fenced area with young child's toys strewn around inside. The fence was a small metal black one and the toys were very colorful and gaudy in the environment.

When I tried to follow her inside the house, a white fog swirled inside. It was like trying to enter a structure fire and being surrounded by dense smoke, trusting only in the safety of a line and the solidity of the wall you are following. You can see only a few inches infront of your face, even the source of the dense smoke is lost. I dreamt that I saw, the fog cleared, but instantly I couldn't remember.

I cried as I found myself aware again outside on the lawn. I called out to her again, begging to see him. To be allowed to remember something of him. She would not let me see him directly, but showed me a photo for about 6 seconds. I dreamt he was with another young child/ older baby that I didn't recognize but felt was somehow intimately connected to him/us... an unknown sibling? This child was fair haired, so much so that I doubted if it were my child, perhaps some other important person. The answer was lost in the fog. But I knew this moment was short and chose to concentrate on Perry. In the picture Perry was an older baby, or very young child, and I recognized him instantly although he was changed by age. I was startled by his long dark hair that hung down to his shoulders. Before this I had him pictured in my mind with a tidy little haircut sort of like his fathers. It struck me that either they didn't cut hair like we do here or that he was not yet a year old and they were following my wish not to cut his hair yet.

And then it was gone. I was crushed that I would forget the picture just as one more brief mortal memory. Everything seemed very transient to me.

I am not sure what to make of this dream, just a sort of desperate seeking for my son in the one area where he may not be denied to me here. Whether it was granted or just my mind giving substance to a desperate wanting I do not know.

The second child in the picture is sort of bewildering to me. It is easy to brush aside most of the dream, but it was like a fragment of something I did not know and could not dredge up on my own was somehow incorporated. That I was shown something and then it was quickly taken away. In most of my dreams I can pick random thoughts from my brain for each portion and trace each segment back to a logical conscious origin, like my brain was fitting together leftover or random thoughts into a puzzle to make some sort of order out of randomness. But this puzzle piece seems unfamiliar to me in my life as I know it now. And it bothered me, like the baby/child should also be extremely important to me but I couldn't remember.

Friday, February 24, 2012

People and Things I am Thankful For

I read about a young 17 year old that had lost her baby. I don't know how much support she has received as a young mother, but it made me think about all the people that have helped us in our journey. I have also had a really hard time seeing God in my life lately, and it struck me that God was there, he just used people to be his hands. We tried to write thank yous, but in reality everything was/is such a blur that we didn't express ourselves well and couldn't keep track of everything. Here are a few things and people, with names ommitted (you know who you are):

The friends, responders, people from our church, my Mom who came to our house that day. Sheets were washed or replaced, calls made for us, my daughter was taken care of. Although they cleaned they were very careful and I did not have to face the issue of everything disappearing like Perry hadn't existed. The responders tried to do things in a way that was caring, and many of my emergency service friends also came to his funeral. We didn't have to drive during a time concentration was impossible. Our driveway that day was lined with responders from Cheatham County who knew us.

Our family. You came and cried with us even when there were no good words.

The people at the funeral home, who tried to take care of Perry's body in a respectful way. At least one was a neighbor, several were church members, and I didn't feel like this duty was undertaken by strangers.

My fire and work family. They transported family members (even barring a chest to get through security in a timely fashion), stood watch at wakes, made sure my Dad could make the trip down, took my Dad in when needed, helped take care of the practical and monetary issues I was pretty clueless about, and most of all gave me the gift of time to heal. I still do not know who worked my shifts (my leave was still zapped from Perry's birth), but what a blessing that they sacrificed a day with their family so I could begin recovery. I think our church and family was impressed with all the men and women that surrounded us from the fire service. I had people calling and writing me from across the USA that I had met and become friends with at the National Fire Academy. Even the police department set up a collection that became available exactly when we needed it, everything almost seemed coordinated.

Then there are the prayer warriors, who I rely on up to this day. I am convinced that I do not have the strength to live this new life by myself, I believe that you and God have held me upright.

Our church family. You came when we needed you, and I realize even more now than before that the church is in the people not the building. You helped in every way possible, down to the songs in the service. When the church leaders try to refocus on being a church family, I know that at least with those that I have had contact with, the leaders are behind the curve. I continue to be thankful not only for what you have done for my family, but for what you continue to do for others. I know so many people that have been turned off by organized religion, and I can only imagine the opposite effect of your actions.

The parents and family members who have lost a child, sibling, or spouse. You show me that survival is a possibility and that there can be good days ahead. You also let me know that I am incredibly normal for going through such an abnormal horrific situation. Your words have helped maintain sanity when even professionals were at a loss.

The givers: of food, hugs, money for expenses, notes, a house cleaning by a maid service.... It all came/comes at the right times and in the way I needed. My MIL was amazed at the quantity of food, but wouldn't you know that after I froze everything, I wound up using everything? For months I had no appetite or desire to cook, and it lasted up until the point where I knew I needed to start trying for myself again. I was also a bit ashamed to need a housecleaning, but after it was over with, I realized it was necessary. The notes and letters have been a light in the darkness, even those that were 'late' I am convinced were right on time.

There are so many other people- the people who visit and leave things at Perry's grave, the children who played with Emily and gave her a sense of normalacy, my Mom who on my worst days drives down and gets Emily and I out of the house.

Thank you.

Thursday, February 23, 2012

Brutal Day

Some days are hard, others are just brutal.

Yesterday was our tax appointment. I had no illusions that it would be easy. Initally Chris was going by himself, usually he just drags papers back to me to sign. But plans changed, and I understood that he did not want to face this by himself.

The time came to go through papers. Normally we have everything laid out and organized, we primarily use our CPA because we have the misfortune of frequent tax audits. It went fairly smoothly until we got to the dependents area. Frank had to leave for a few minutes because we both started crying as Chris rummaged through the important papers box and found the thin envelope that is Perry's. It was incredibly difficult to pull out Perry's card and his death certificate. It is so final, his stay so brief to be contained in basically only one federal document. Next year he will not exist to them.

The would have and should haves eat your soul. We should have been thinking about a passport for future trips, real or imagined. We should have a new passport in our large manilla travel envelope, we should have already pulled it out once for our upcoming trip. It just makes it obvious that he will be missing on this trip, the irony being that we have the largest room we have ever had and no more people to use it... but there should be. It makes it obvious that he will always be missing until we reach our end here on earth.

We came back and lit a candle on the way home.

By 8:00, we were all exhausted.

Tuesday, February 21, 2012

Limbo land

My life these days is a lot like the movie groundhog day. Get up at some point, confront the reality Perry is not here, and struggle to find some sort of new meaning in my life. I still have painful reminders, YMCA workers ask where 'the baby' is, the ground continues to settle around his grave. The autopsy results are still out there somewhere, you want answers but fear them. I want to call his pediatrician who promised he would share results, but am afraid there is a reason he has not called beyond the awkwardness.

At times the pain is so new it feels like yesterday, sometimes I cry because it feels like decades since I held him. I no longer find new socks, dust gathers on his toys. I find myself stroking his pictures or kissing photos because I miss the touch of him so much it makes me physically ache.

There is no easy road to this. I feel like the expectation is that I should be normal by now or at least faking it well. This makes it harder to feel that I am not alone. I am starting not to write because it all sort of begins to sound the same.

I talk about putting flowers on his grave for Easter and it is a very poor substitute for what should be, but it is what I have. We have already put away Christmas trees and hearts on sticks from his 'hideout', a surreal experience, but this is how my family measures time now.

I have no desire to participate when the church members are giving up things to refocus. I have given up my son this year, everything else seems sort of stupid. Fasting, giving up facebook, or chocolate will not cause any great changes in my life. If anything the giving up part would be meaningless and perhaps too easy, a step backwards... it is the doing that is hard.

I feel stuck. My feet in mire. Pills will not bring my son back, but neither will this frozen life. I am in limbo, a purgatory only those who have lost children understand.

I need a goal, something to look forward to... the planning of the vacation sometimes helps, but it will be over too soon.

Perhaps my challege for change is a doing not an abstaining. A race, an instrument, taking up dancing again? I struggle with defining it.


Tuesday, February 14, 2012

Pumkins and glass

Yesterday just started out badly. Sometimes the loss of Perry feels very raw. I think that when you start to heal a little bit, your brain lifts a little of the shock away and new things hit you.

I drove home crying because I realized that my son was not going to be there. The cleaners were coming and they were coming because I don't have a son anymore. I have tried keeping up with cleaning in the kitchen and making the laundry pile manageable. The rest of the house has been just crisis cleaning for the most part. After losing Perry, I either have a hard time getting out of bed, or things like dusting seem really pointless.

I also cried because I had to do something with his pumpkin. So I lit a candle on the way home, told Perry how badly I missed him, and rounded the corner back feeling really empty and a bit stupid for leaving Emily at daycare so I could tackle the house ( I really hate the house by myself now).

I finally decided to keep the seeds for next year and compost the rest. I spent the next 30 minutes sorting through the guts. Initially my intention for this little pumpkin and Emily's was to let Emily decorate the outside and attempt a from scratch pumkin pie. Emily happily did this while her brother watched her from where he was practicing pushing himself up so he could look around on his spot by the couch on the floor. It was just one of those nice ordinary moments. A memory that I smile at but cry because there will be no more.

When the housecleaners came, I made myself allow them to clean everything except the mirror by the changing pad. I'm not ready to erase what may be his fingerprints left as he reached out to touch the baby in the mirror. When the time comes I want to do it. I never got around to letting Kristen make his hand and footprints for the baby book, I have the footprints from the hospital, but nothing left of his hands.... Hands that grabbed my hair for security, and that were beginning to touch so many things in curiosity.

It hit me as I looked around my house, how frozen we are as a family. The multiple little things lying around from Perry. Diaper wipes on Emily's dresser, small soft animal rattles in our bedroom. The baby shampoo in the bathroom rolling organizer, huis towel hanging on the back of the bathroom door. The giraffe costume on Emily's closet.

And worst yet are the clues as to why. The many grief and infant death loss books, the picture book I put together after he died, the funeral home card so we can call them to level the ground, small sympathy cards scattered from the plants that were gifts, and the large photo from his funeral that I think was framed in white to match his coffin. If I had it to do over, I would have begged my SIL to put the frame in Cherrywood so I would not think about his little white coffin whenever I look at it. We can't get rid of it, so it is hanging in the hall. Sometimes when I pass it, I touch his face... Somehow hoping I will feel warm soft skin and be able to pull him back out to me like something from Narnia. But just like Emily the day we came home from the churchyard, I find that it is just hard cold glass.

Her fingerprints were still there, but I let them wipe those off.

Saturday, February 11, 2012

Small talk

I'm trying to act more normal. Please understand though that if I can't make small talk it is because on my side of the fence I have very little.

The superbowl... it had no effect on my life. Does it really matter who carried the ball across the line more? I guess the only thing that matters about it is the families watching. If it is bringing them together or if it is seperating them as a parent leaves the family behind because tickets for everyone would be too expensive.

Clothing and shoes. They just cover your body. You'll throw or donate most of it away in less than a few years. I used to love kid's clothing though, and this leads to pumpkin hats and teddy bear overalls that makes me smile with tears in my eyes.

Take mail and taxes. Everyone talks about taxes, and mail, well it's all junk for the most part right? Well, I can't. There is this whole fire box I avoid in my house that is full of important papers. I used to love it because it was all happy things, transcripts of schools, wedding certificates, birth certificates, and passports that promised that the best of life was yet to be. Now there is a death certificate. This year I will have to put that my son lived and he died on our taxes so some bean counter can decide if he legally existed for government purposes for the tax year 2011. Next year it is simple for them: your son is clearly no longer a family member in 2012 and for every year on. Easy right?

And the mail... I get satisfaction surveys for the funeral home, lifetime guarantees for a small burial vault. Who knows what else my husband has shielded me from, I know I've taken care of some things without him knowing. I think we have both thrown away Gerber life insurance mail advertising free life insurance for your baby, without the other one seeing. I still get email from them stating "Your 8 month old should be crawling!". Unsubscribing, the spam list... it still gets through.

But then I also get different mail. Letters from Moms who have also lost children, that say I simply write what they want to and can not. In these letters, the women are full of compassion for people they have never met. I get small slips of paper from other states and sometimes just a line "I remember Perry". I put the papers away in a drawer and look through them when I feel alone, even the little slips.

I don't get invitations to baby showers anymore. I know people are still having babies because the pictures of the fully stocked nurseries pop up on facebook with astounding regularity. I guess they are afraid, but I'd love to get one that said "Come if you can, and we won't be upset if you don't." I can't guarantee that I'd come, but I still care. I'd even be willing to try to come, but I think it would be more upsetting to everyone else if I cried.

So I don't know. How do I talk to people?

Wednesday, February 8, 2012

Nothing Learned

I am so sad. When Perry died, we requested memorials be sent to a local charity. This should be a good thing, right? Help struggling Moms who are trying to decide if they should keep their baby. I emailed them, wrote a little about Perry Bryce and requested that the funds be used for safe sleep related items.

So the past few weeks this charity sent a list around at our church. On it they listed a request for blankets, but no sleep sacks. They learned NOTHING from Perry or his death.

You really only need maybe the receiving blanket from the hospital, all the rest is just crud that can wind up in the crib and help kill your child. I'm sorry, but you can keep a baby warm with clothing or sleep sacks. Any blanket is really not safe, because at best it can lure families into thinking that if a thin blanket is ok to swaddle with, well that nice thick blanket is too because it is going to be a cold night. Even if Mom would never use it in the crib, a babysitter or grandparent might.

I can't help but feel like he was only a few checks to them at this point. What a beautiful baby boy was lost for nobody to learn anything from it. Of all organizations, they should have been the most aware. Maybe gleaned something from it.

I'm sure it's an American cultural thing where everyone plies the new Moms with blankets, but it needs to change. At the least, if another child is lost, let the parents know that there was nothing that could have possibly been done better. 

Trust me, the alternative will eat at your spirit and mind like cancer.