Tuesday, May 29, 2012

Perry's Birthday Project

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Perry's birthday is rapidly approaching. So far we will be donating sleepsacks and safe sleep information to at least 5 different hospitals in 3 states. Please pray that these sleep sacks and the messages that are given with them will strike parents to take action. Please pray that they will not only affect these parents, but ripple outwards to the 100 lives each.

They say the loss of a baby affects on average, at least 100 people in their immediate community. May these people that would be touched if there were a loss, be touched without one and continue to spread the message.

Please let parents know that babies should be put to bed on their backs in a pack n' play, crib or bassinet, without blankets, peepads, bumpers. Please think about giving a sleep sack at the next baby shower instead of a blanket. Encourage parents to consider methods such as babywearing while the child is awake in place of cosleeping as a bonding option. Remind charities that benefit young families or babies to consider safe sleep recommendations when making purchasing or educational decisions. Let young Moms that are facing a long list of recommended nursery items on a registry list know that some of the things are not only a waste of money but a danger to their child.

While some babies may die regardless of what the parent does or doesn't do, I want these parents to know that they did everything possible and not have doubts.

I cannot say that. I wonder if the same blanket that I held him in was part of it all. His death is listed as undetermined, it offers no explainations or comfort.

I believe that perhaps there is one child that God is reaching out to me to save. TN has the 3rd highest rate of infant mortality in the United States. When Perry died there were at least 3 other babies that day at the examiner's office in Nashville. 3 other babies whose parents are also facing first birthdays alone. I heard a few days later of another family losing a baby in Dixon. Something needs to change. Something has to change.

Tuesday, May 22, 2012

Family/ Geneology

I have recently started following an interest of mine, geneology. I have always been interested in it, I guess as a military kid who felt like my roots were nonexistant, geneology provides a way of regaining a sense of place. Perhaps not to a location, but an understanding of where you come from. I imagine this is a strong drive to many, adopted children and just the plain curious alike. But I also find myself drawn to it for other reasons.

I find myself drawing comfort from adding names to branches. From finding women who have also lost children. I find myself getting angry when I 'discover' an infant or young child that the majority of 'trees' leave off- almost as if they are saying that the person only mattered if they produced children or lived at least past 10 or 15 years. It's sloppy and annoying.

When I add that child, I feel like I have reclaimed something from death.

I guess I believe that every child makes an imprint on a family. It changes the personality of the individuals, shapes actions and events. Even the void of a child continues to make a lasting impression on those around it- almost like you can tell the existance of black holes by the movent of objects around them. Like other extreme life events, it magnifies traits.

I added Perry to my tree. He is so small and brief, but what a large impact he has made on me. I want other future researchers to know he existed. Future Grandchildren to say "I remember him on my Grandmother's wall, and look- here he is. They never forgot him.". You can even add stories and pictures, something I will probably do for him. I'll be important perhaps because they came from me. Perhaps the casual people who don't care about children that didn't produce offspring will stop and pause when they see a picture attached and add him. I want to make him matter to them.

Family is such a very strange thing. Family gatherings are too. A counselor said that family gatherings are like sugar. Everything is usually painted pleasant. Unfortunately to get substance, to learn, to grow, to be able to progress you need food- the context of the reality, the acknowledgement of good and bad. For grieved parents to progress, they often need that acknowledgement. If you family isn't capable or lacks the skills, family gatherings are dangerous places. To a parent who has lost a child, it can be the equivalent of a gunrange to a veteran who saw hard combat.

The counselor explained that he believed that we were indeed affected by PTSD. And that in the future, we need to limit or avoid exposure, and provide a safe place and a safe way out to prevent regressing back. To be able to find our new normal (not cure- you can't bring Perry back to earth), we need to begin to control what we can and not allow others to set exposure levels for us. He seemed shocked that we even attempted a family gathering so soon and expressed concern that it might have been damaging.

Just as gatherings, family, and events, the individual people involved are complicated.

People are not all good and bad, we are degrees. There are things perhaps society remembers about a person, what years they served in the military, wealth, and accomplishments that are easily written down on paper. And then there is the other side that is not written down, but just as important. What legacy did they leave to their family? Did they care? Did they leave scars that affect to this day how their children's children react to others?

To understand the scars or negative events, sometimes you have to know the source. It gives you that ability to say this is why this person reacts in this way, and I am not letting the event change how I relate to my own spouse or child any more.

Even the things we don't like to talk about- miscarriages, infant deaths, inherited physical and mental diseases, have value. Sometimes the provide clues to not only what is wrong but how to prevent or treat it.

A person isn't defective if they have a 'bad' genetic trait, mental illness, physical illness, past negative event... We are all given slates with cracks in them. It is how you use the canvas you are dealt and whether you choose to face or ignore them that matters. Whether you allow the cracks to spread onto surfaces your children will write on... And if they do, inspite of all your efforts, sometimes sharing how you patched it on your own slate, or where it came from, is just as important. You don't always recognize them as cracks when they begin or spread, sometimes you only learn that with life experience. But you can give your children the power of knowledge, that may be that little extra piece that allows them to make a concious decision. That takes the power from attacker, the sting from death, and all of the the control from an illness or disease. It gives power to the descendants of victims to say that the abuse stops here. It lets you grow children that are more sensitive to others as a result of your experiences instead of damaged people.

As I look at the braches of my family trees, I am very aware that there are probably saints and murders, revolutionary war heroes and child abusers. Sometimes a person can be both. Perhaps the most remarkable figures do not have the most historical importance, perhaps they are a simple name that brought joy to their family or the person who had the strength to walk away from a history of abandonment and form a family that was well loved.

So how do I make future generations understand that about Perry?

Thursday, May 17, 2012

Perry's Stone

This is the first rough draft of Perry's stone, the stick is going to be a crook to hang a small lantern on. I am curious to see it this weekend in person.

Today I also received an email from oriental trading company referring to the catalog they sent to my house for supplies specifically for a 1st birthday party. At times like this the feelings flood back, the sense of the enormity of the loss.

I can't really ignore this day, but at the same time you can't do normal. Cake would go uneaten, and there are no happy pictures. It is hard to celebrate the beauty of a wonderful little boy that I feel privileged to have held in my body, arms, and heart without remembering the bitterness of an abrupt ending to our time here together. We have faith that this is not the true ending, but trust as simple as a child's, that you need to believe it here on earth without tears is hard to keep sometimes. The world is so willing to break it. I see the trust I want to have in my Daughter, her easy acceptance. And everyday I see how even her simple faith is challenged (a boy telling her she had no brother in heaven- did he mean he didn't trust she was telling the truth or that it is not so?).

So his stone is our picture. We want to believe that the angel does not cry because he knows this is no ending. It is a rebirth, a metamorphosis. Perry isn't afraid, perhaps this is the world he has just left behind before his brief travel here, or perhaps he recognizes with an innate knowledge that he is returning to the hand that formed him.

But as always, we miss him here and pray that God will let him know that he is loved beyond measure by those yet to join him as well as those he is surrounded by.

Saturday, May 12, 2012

Mystery Solved

My computer contantly has marks on the screen. I wipe them off and they reappear with a high frequency.

I was watching my daughter the other day, I'd left the computer on with a picture of Perry pulled up (on my blog or facebook). She leaned towards the screen and planted a big kiss on his face.

It hurts to know that she has to show her affection this way. In kisses on screens and in other instances blown towards heaven. She is very affectionate, and when Perry was here she was constantly in contact with him. A foot on his leg as she colored, a hand on his foot as he wiggled on my chest in a baby carrier.

She was and is a great Big Sister.

Sunday, May 6, 2012

Ice Cream, Swings, and Other Parents

The past few days have been very tough. I keep thinking how horribly wrong it is that I can tell you how much Perry's brain and heart weighed. I read it on the Autopsy, couldn't help but read it. I initially looked at it because I wanted to fill in the last spot for 5 months for his height and weight.

In the middle of all this, I am constantly being reminded that I am not the only Mother who will look at Mother's day this year as something to get through rather than celebrate.

I was given a book called "I Will Carry You", written by a Mom who chose to carry her pregnancy despite a fatal diagnosis. She was able to spend 2 1/2 hours with her child. There were several things that struck me when reading this book. The first was when she was carrying her Daughter and she states that she tried so hard to keep from envisioning her eating ice cream and swinging. If you have followed my blog, you know that the only food I ever gave Perry was a taste of ice cream (and I am grateful for that- I can only imagine how wonderful he thought food must be if ice cream was his first glimpse). And I confess that one of my sorrows is that Perry never got his own swing. My Daughter had a small swing that hangs in the yard with her name on it. When I saw a replica hanging at my Mil's house, I cried for hours, and wanted to take a bat to it. I don't want this swing to exist without HIS name on it. It struck me that I have been given more and at the same time so much less than other mothers. The irony is that the mothers who have not lost a child will not recognize the true extent of the blessings of everyday life. I mourn that I did not make his days more special... At the same time I can not imagine the feeling of holding a living child and knowing that there is no 'use' in imaging a future you will not have. These mothers mourn their children before they leave- is their joy ever full, knowing that the flip side to this joy is the loss coming? I was genuinely happy with my little family. Could I have been happy if I knew what was coming?

Then this shift I think we lost a teenager. I held his Mom in the ambulance and I felt oddly distant. But there was this little voice saying "Hold her, she feels alone". And I knew that today was probably the first day for her in that dream that leaves you screaming at times to wake up, and groaning in other moments, one that you will never wake up from until God allows you to come home to your complete family. The time of scratchy sheets that bring you back to reality in the night, food that gives you no substance but hangs heavy in your stomach like bricks, and flowers that wilt before the scent of your child fades from your house.

Groaning- Have you ever heard that word, perhaps read it in the bible, but have you ever heard one? It is a horrible sound- I heard it only in the voice of patients in bad physical pain before. But how much worse is that low sound when you realize it is coming from you, that your very soul is releasing a little of the pain in a form you can hear?

The one thing that keeps me moving in times like this, is the hope that there is yet good in life for me. That as bad as this groaning of the soul is, that there will come a day I can look back and say "I am glad I kept going. I am so glad I didn't miss this part".

For now I wander through a desolate and rocky wilderness. I am stumblimg through in bare feet, the ground is bloody with my imprints.

But I am beginning to look around instead of staring at my feet, and I see other Mothers and Fathers here. And somewhere in the distance, my Daughter is dancing for joy in some future time, and I have to make it to her to share it with her.

As I try to shuffle forward with perhaps a little direction, I look at these others wandering with me. May God bind all of our feet.

Thursday, May 3, 2012

No answers

The results are in. Perry's death is undetermined. They can't say 100% that he did or did not die because of the blankets and things in his pack n' play.

He was pretty much perfect- measuring ahead on everything. Nothing so abnormal that it would cause any concern.

I have a copy of the results in my purse. What to do with them? There is nothing official that will be created with his name again. But what a dreadful thing to have. You want to keep growth reports not this. You don't want your child reduced to measurements and weights.

My husband began crying today as we signed in for our 'conference'. It is the last time we will write his name and birthdate at the Dr's office.

I think secretly we were hoping we would find something- maybe it would have relieved the intense feelings of guilt.

The ladies on the SIDS page say that undetermined is a mixed thing. On one hand, you will not worry as badly about something congenital in your next child. But they warn that we will always be in the CPS system now. One said a diaper rash brought on an investigation. The case is never closed, but left open.

And how it stings, because we loved him. I nursed him, changed his diapers frequently, sang to him, prayed over him. Rocked him. Talked to him. Kissed the soles of his feet so I could feel his toes curl. I would take his hands and guide them to touch objects that he would stare at, but were out of his reach. I didn't want him alone or frustrated, I wore him and tried to let him see as much of his world as I could. I didn't want this. No parent that loves their child would ever want this.

Wednesday, May 2, 2012

I just received the call from my pediatrician.

Perry's Autopsy results are in.

Here it is. The fear, the grief comingling. The feeling of not wanting to go in but having no real choice. If I do not go it will always hang over me... probably will anyway. At least we will not invent new horrors in our minds.

So sometime tomorrow the nurse will call to set up the time for the afternoon. It will probably be towards the end of the day so we will not have to wind through a waiting room with blury eyes.

What will it say?

In times like this all you can do is pray. Hope that my pediatrician is guided to use words that will help settle the hanging cloud. I wonder if he prays as well? What goes through his mind? Does he even remember his little patient?

Oh God give us strength.