Thursday, July 26, 2012

The Willey's Behind Willey's Dam Camp

The Willey’s Behind Willey’s Dam Camp
Copyright 2012 by Lori-Ann & Paul Willey

Besides our obvious love of nature, wildlife and the Maine wilderness, there is much about Paul and Lori-Ann that many, if not most of you do not know.  It is not that we hide who we are; however, our Willey’s Dam Camp Facebook page was not created to be about our accomplishments or lack of accomplishments in our lives.  Instead, it is about our experiences living off grid in the Maine wilderness, our struggles, our fun, the nature, and beauty around us as we share our lifestyle and experiences of the wilderness kind.  It is not of the other camp owners in the area.  We share our Dam Camp page openly with those who wish to follow our unique way of living despite Paul being disabled, and Lori-Ann being the worst klutz in America.  However, because we do not splurge our personal lives outward on a public page such as our Dam Camp page, others have taken it upon themselves to invent who they think we are, but through falsenesses and fantasies of their own.  False thoughts are one thing, but to act upon them is quite another.  This bio may or may not be the answer, but we are hoping it is a start. 

First, despite rumors we are NOT “anti’s” (against hunters/hunting) or “greenies” (hippies that live off the land).  We have legally shot three moose and several deer between the two of us, and when the squirrels need thinning out here, we even eat them.  Our camp motto is, “If you shoot it, kill it, if you kill it, eat it”. 

Paul is a 14-year Army Veteran and was medically retired in 1995 with Multiple Sclerosis, he taught advanced schools while in Service.  He was also an Equal Opportunity Representative.  During this time, Lori-Ann was a stay at home mom, taking a few computer language courses at the Ft. Devens Education Center to keep her brain working a bit.  Otherwise, she was a full time mom and wife, except for the last few years of Paul’s military service when she worked as a supervisor at the guest lodge for military and families in transition.  During that time, one of the guests wrote an amazing heartfelt editorial about her that she still holds dear to her heart.  The title was, “Marvelous Maid”.  Later, she took a job as a nighttime stocker at the Commissary, and when at 9 months pregnant her belly became too big to work the aisles, she was made lead stocker and warehouse worker working on her feet sometimes 13 hours a day 11 days straight, but she loved the physical work.

When Paul medically retired, we moved back home to Palmyra, Maine where Lori-Ann was a substitute teacher, then and Ed. Tech working with both learning disabled and behavioral problem students.  She loved working with kids and still misses it to this day.  Later, she became a computer instructor for kids, teachers, and adults of all ages (her youngest student was five, and her oldest student was 88), to include after school enrichment programs as well as Summer Computer Camps.  She had to give up teaching around 2001 because she needed to become a home care attendant to Paul for MS related medical needs that are not made physically apparent.  However, she continued to volunteer at the local schools when she could.

In 2000, and 2001 Paul was Microsoft’s World Virtual Golf Association Champion.  He was in Sports Illustrated, about every golf magazine, other magazines, and countless TV Channels, Local, national, international, and was even part of the news shown on airline flights, and many media types to include magazines written in foreign languages, and even trivia quizzes across the globe!  Many of his interviews were live from all over the world, the furthest away was “Perth Australia…. 14 times zones away.  Do a search for Paul Willey on the Internet, you will find stuff.  From time to time, Paul’s name will pop up in the media.  The last known time was in I was in the Bangor Metro May 2009 or 10 edition and compared to legendary golfer of Maine, Mark Plummer.  During his VGA years, we met many celebrities to include golf legends, Annika Sorenstam, Joe Montana, but it was Russ Francis, who for many years, remained in contact.  However, it is not the people with big names that intrigue us, but people like ourselves.  It is the everyday people, and the down to earth people that grab our attention and captivate us.  Lori-Ann’s personal favorite saying is, “It’s not that I less people, but love nature more.”  Neither Paul nor Lori-Ann cares if you shovel shit for a living.  If we like you, we like you.  It is as simple as that.

Paul also went around to different area schools, to include resident schools for troubled teens, and did inspirational speaking events, where he would give out autographed games, tokens, and golf balls.  Nokomis Regional High in Newport even wanted him to come in on Career Day.  He declined out of respect for the kids futures.

Paul was nominated and named the MS Society’s Father of year in 2001, and both Lori-Ann and he were the moderators for an online chat forum sponsored by the MS Society called, “Kids Konnect”, to help kids with the parents of Multiple Sclerosis.  Paul had to take a back seat the next few years, but in 2004, we became partners in a 10,000 plus square foot Wedding and Convention Center that includes many associated businesses. 

Lori-Ann is also an author, painter, and wildlife/nature photographer.  She was featured in the May 24, 2012 edition of the Penobscot Valley Explorer in an article written by Kimberley Barr Lyons, a well known registered guide and writer in Woodville, Maine.  Until that date, Kimberley was the only reporter we allowed in here to do a story on us.

Read the article “It’s a State of Mind” starting on the front-page and see how much we cry about things out here at camp, the harassment, etc.  You will also see where Lori-Ann sold photos (for no real profit).  If you look, there is no link to where she sells them now, that is because we had to stop because of the unpleasantness by others around camp.  Do you remember when I mentioned false rumors and those who act upon them?

We have had reporters from Maine, other states, as far away from Oregon interested, and Outdoor’s Magazine that Lori-Ann has refused interviews for because she does it more for the enjoyment and loves to share it with other people.  Outdoor magazines monitor our site and some sites and newspapers have permission to use some of her images with their online pages.

For a while, we operated “Willey’s Dam Coffee”, which opened in January 2010.  Unfortunately, we also had to close that business due to our situation around camp.  It definitely was not due to lack of business, especially when several restaurants, cafes, and vendors from around the world were begging us to allow them to sell our coffee at their place of business or at least sell them our recipe.  Again, publicly, we did NOT say why we were closing it.  Lori-Ann also stopped selling her books publicly, and has refused publishers in the last year because of the stressors’ around here.  So now, all our businesses are two hours south of here.  Lori-Ann has donated a few of her children’s books to children with cancer in the past as well, so you can see our hearts are not as hard as some may think.

Our son, Josh, was home schooled by us, and graduated three years ago when he was 16 with a National Honors Society certificate offered to him at the nearest high school that also gave him his high school diploma,  and is now out in Hollywood, CA on his OWN DIME,  because we tried to teach our kids responsibility and respect.  He was on three TV shows just last week, and is booked up pretty solid on several different TV networks.

Our daughter, Alanda, is a stay at home mom, fulltime online college student, as well as a work at home mom while she raises our two beautiful granddaughters, Autumn & Ellie!  Photos of them are splashed all through our Dam Camp Facebook page, as you have probably seen.

Both of our children are very intelligent and gifted individuals on so many different levels that make our heads spin.  We raised them to be respectful, independent, and law-abiding citizens.  We could not be more proud as parents as we are of these two.

Over the years, we refuse a lot of media attention, because we are not attention seekers with nothing better to do than to “spy” on others and sit on Facebook all day, as some of our viewers tend to think.  We wish to live a “simple” and happy life in the Maine wilderness.  With the inventions of modern technology, we can live a modern off grid lifestyle, but that does not mean it is not a whole hell of a lot of work.  Paul continues to be the brains, and Lori-Ann the muscle.  Together, there are no real man/woman roles here.  There cannot be.  It all needs to be done.

We are hoping that this puts a stop to the rumor mill as spread by some who dream up their own thoughts and spread them around like a wild fire causing undue havoc upon us.  You now know more about us than we wished to give, as that is not the purpose of our Willey’s Dam Camp Facebook page, but if this is what it will take to set the stories straight, then so be it.  Only time will tell.  Again, it is Paul and Lori-Ann trying to bring back the peace.  It is time, way past time for others to do that on their end as well.

I will leave you with a quote that I heard a friend say to her daughter about 20 years ago.  Her teenage daughter made a derogatory comment about the girl next door to them.  The mom scolded her daughter with this sentence:

“You are no better than her, and she is no better than you, so cut the shit!”

Thank You,

Paul & Lori-Ann Willey

Thursday, July 19, 2012

In Memory of Dawn

In memory of Dawn.
Copyright 2012 by Lori-Ann Willey

This was originally written 12 years after Dawn's death when I relived the experience all over again and so vivid.  It has since been 12 years after that, 24 years after her death that I pay tribute to our Dawn.   To you, the reader, I also say, "Thanks for your time!"  That phrase will mean something by the end of this reading.   

Dawn Renee Willey

Name:   Dawn Renee Willey
    17 June 1988
Death:  19 July 1988
Cause of Death - Trisomy 18
(Edwards Syndrome)

When Paul asked me to write Dawn's story, I was emotionally mixed.  I was tossed between the fears of feeling her death all over again to feeling a privilege of being asked.  Somehow, being a little hesitant, I agreed to write this story.  This is her story as I remember it.

Nearly the entire time I was pregnant with Dawn, I had an uneasy feeling about being pregnant.  Our first daughter, Alanda was delivered by C-Section just two years prior, so in the early stages of pregnancy, I brushed this odd feeling off as possibly being nervous about having another C-section.  Back in 1986, the Doctors had told me that once I had a C-Section; it decreased my chances of delivering any children by natural birth in the future.  As my pregnancy went on, I started having problems with bloating, high blood pressure, and headaches.  The uneasy feeling about being pregnant never really went away, and for some unexplained reason, as the baby grew, so did my concerns.  Each time I went to the Doctors, the uneasy feeling subsided for a few days, as I was reassured that the baby was developing nicely.

Because we did not know exactly when I became pregnant and had a few problems delivering our first child, it was routine that I undergo more ultrasounds and stress tests than the average pregnant woman would.  During the stress tests, I could hear our baby’s heartbeat.  During the ultrasounds, I could see our baby developing inside my womb.  Nothing is more precious than seeing an unborn infant basking in the warmth of your own body.  A place where you know the baby is safe from harm.  Safe because I know I am the baby's protector from all things, living, and non-living. 

At each ultrasound session, the technician would take measurements of the baby's head, legs, etc. so growth could be monitored and compared to the previous and/or next ultrasound.  The baby measurements also calculated the approximate birth date….the average sized baby's birth date.  When I was 5 months along, the ultrasound measurements were again taken, however this time the Doctors became a bit suspicious about Dawn's health.  She did not grow at all from the last ultrasound, which was taken 3 weeks earlier.  However, she grew normally during each subsequent ultrasound.

For some strange reason, when the doctors were suspicious of Dawn's health, I was not.  For the first time throughout the pregnancy, I did not have that uneasy feeling.  Looking back upon it as I have hundreds of times since, I think it was the beginning of a denial stage.  Paul was now showing concerns and kept a close eye on how I felt and how the baby was making me feel.  He became almost obsessed with how much the baby was moving around and of her jumpy reflexes.  Dawn was not reacting to music like our daughter Alanda did.  Often he would poke my belly, trying “wake” the baby just so she would move a bit.  Once she moved so he could visibly see the movement, he seemed to be somewhat satisfied.  Nothing beat seeing the gleam in his eye each time he saw the baby move.  He was a proud Dad and that was always acceptable. 

As the weeks went on, my blood pressure began to climb higher and higher (toxemia).  Instead of being bloated in the evenings or after eating something slightly salty, I was bloated most of the time now.  I began to have headaches and my blood pressure was going up, up, up.  That uneasy feeling started to come back, this time stronger than ever.  Due to Dawn's slowed growth and my toxemia, the doctors had me in getting checkups every week now, sometimes twice a week.  They put me on bed rest and monitored my blood pressure carefully. 

I have never been a church going person.  Growing up, my grandmother was like a God to me.  She was who I thought about and looked to for strength.  Although she was gone, I had often talked to her, as most people would to God…asking for her guidance to have a healthy baby.  One day as I walked from the kitchen to the dining room, I remember stopping, looking upward as I closed my eyes and asked God to either let me deliver a normal healthy child or to do what he thought was best for her.  I was shocked at my own words and mad at myself for such thoughts.  I felt terrible, but also knew something was wrong.  Call it a mother's instinct.  Call it whatever you want.  Whatever you want to call it, it is what I had.  It is all I had.  I could not explain it then or even now after 12 years.

When I was almost 9 months pregnant, I was to the point that I was feeling sick all the time.  The headaches just would not go away.  I was in almost a constant daze at this point.  The doctors were trying to reduce my blood pressure and after a while, I guess they gave up.  It was then, that the doctors decided that I needed to deliver this baby.  I had graduated from having Toxemia to pre-eclampsia.  This meant that the baby's health and mine were in jeopardy.  The stress test on the baby showed that the baby was also under stress and needed to be delivered.  Having the baby by C-Section was the only route to go.  The second the decision was made by the doctors, none of the staff wasted any time getting things rolling. 

Things happened so quickly that Paul was not even allowed to come in and watch Dawn being born like he watched Alanda being brought into this world.  I remember the feeling of anxiety come over me.  It was then that I realized that something must be wrong for such urgency that Paul could not come in and watch the birth of our second child.

Soon our baby was born via an emergency c-section.  Paul anxiously waited outside for them to bring out Dawn.  Finally they did.  She was in an incubator, which did not bother him, but Paul looked directly into her eyes.  He just saw black, it was a look he had never seen before, and he knew something was wrong.  However, the doctors quickly assured him that all was fine.  They had a bit of trouble getting her to breathe, but she was doing fine now.  Paul told me he visited with our baby for a little while, and then came to see me.  He brought me a picture of her and told me he officially named her Dawn Renee.  I was so anxious to see her.  I knew, that because of the C-Section, I missed the initial bonding period with her after her birth, but what needed to be done, needed to be done for both us.

The next morning, the doctor came in to visit us.  He sat down and introduced himself.  He had an uneasy look upon his face and told us that Dawn's health was not good.  She had stopped breathing a few times (apnea) and they had to resuscitate her.  While checking her condition he found some characteristics that were signs of Trisomy 18.  Neither of us had ever heard of Trisomy 18 before.  He noticed that one side of her face looked smaller and underdeveloped than the other side.  The most prominent characteristic were her hands.  As she made a fist, as all babies do, her pinky and forefinger over lap her other fingers.  Another characteristic were the lines on the palms of her hands.  They were in reverse order than the average palm.  Strikingly, Dawn had no lifeline.  These are almost a sure diagnosis for Trisomy 18.  He went on to tell us that tests would have to be done in order to confirm or deny his suspicions.  He also told us that if he had not have seen a Trisomy 18 patient before, he would not have recognized these characteristics.  When we asked about her future prognosis, he told us that babies with Trisomy 18 fail to thrive.

I guess we were fortunate that he recognized the signs and remembered them from a  patient he had seen before.  I was pretty much just sitting and listening to what he was telling us.  Emotions had not set in yet.  I mean yes, it is scary to hear a doctor tell you this terrible news before you even see your baby for the first time, however, it was only a suspicion.  I turned to look at Paul as the doctors words started to sink in.  Paul had tears streaming down his cheeks.  Instantly, the doctor’s words came to life.  Seeing Paul in tears instantly set me off into tears as the doctor continued to explain what this whole Trisomy 18 thing was.  Paul mentioned to the doctor that I had not even seen Dawn yet.  The doctor understood where Paul was coming from and told us he would see to it that arrangements would be made for me to see her.

Some 22 hours after I delivered Dawn, was the first time I saw my baby.  The Neonatal Intensive care Unit (NICU) had sent a nurse down to get us.  Apparently, dawn was running into trouble breathing again.  She was having apnea spells frequently and needed to be hooked up to oxygen.  Soon a wheelchair was brought in and I was wheeled up to see my sick baby for the first time.  What news to have to hear, and then see, and then to hold my baby for the first time since delivery while watching her struggle to breathe with a tube in her face!  I am in a daze again.  Everything happening too fast for me to grasp.  I am numb.  I barely know what is going on around me.  What is the matter with me!  I am seeing and holding my baby for the first time.  Where is the joy?!

As I held Dawn, I also had to hold a tube to her face.  This was called "brush by" air.  My poor baby, she was hooked up to all sorts of wires and gadgets.  I knew each had its purpose, and after the initial shock, I came to life and quickly accepted that they were necessary and precautionary.  Only then was I able to look past all these things while I was holding her in my arms for the first time.  Nurses were gathered around, ready for her next apnea spell.  I could only hold her for a few minutes and then the nurses needed to tend to her.  I felt sad as tears softly streamed down my cheeks, both from love and from fear.  There was no time for bonding, a bonding that we both needed and waited 22 long hours for.

As the nurses took her from my arms during another apnea spell, I could not watch.  I needed to escape.  I was horrified about what was happening.  I felt all happiness drain instantly from my body.  From here on out, I never thought I would be able to think happy thoughts again.  Happiness was gone.  Lost forever.  My mind was foggy and my heartfelt empty.  I do not even remember leaving her side.  I do not remember if she was OK when I was wheeled from the room, or if she was able to breathe on her own with the aid of the brush by oxygen.

Upon returning to my bed, still in the post recovery unit, it was apparent that the nurses had been told about the situation with Dawn.  I was treated differently from then on.  The nurses pretty much stayed away, which gave me time to think and sort out my feelings.  The words from the doctor rang through my head a thousand times.  When a nurse came to my bedside, it was so obvious they did not know what to say, so they did not say anything except for what was needed to be said.  I was even asked if I needed any pain killers, more juice, more water, anything as a time filler while taking my blood pressure or tending to me physically.  It was obvious from the look on their faces, each of them knew, each of them knew my baby was terminally ill, even if tests hadn't yet confirmed she had Trisomy 18.  They knew, just as I knew something was wrong while I was pregnant.  I could read their faces.  I did not have to ask and they did not have to tell.  We all just knew. 

I was kind of fuzzy for a few days and have gaps in my memory.  I do not know when I was moved from the post recovery room to my own room, a private room.  This was a place for me to think and not hear another sole around.  A room that seemed to have its own building, way away from everywhere, but close to Dawn and the Neonatal ward. 

That first night in my new private room was so quiet.  I felt so isolated.  I enjoyed the quietness, but it was almost too quiet.  I felt alone.  My baby was only a few rooms away.  She was alone in a sense just as I was.  She had movement around her.  I had none.  She had beepers, buzzers, alarms, voices, and faces.  I had a ticking clock on the wall.  How I wished she were still inside me so I could protect her.  Somehow, it seemed wrong that she was born.  I felt that she was safer inside of me than she was out here in the real world struggling to survive.  Nothing made sense.  I was a zombie;  nothing was supposed to make sense.  It was nature's way of protecting me from my feelings and emotions.  I knew why I was like this, and I was glad I was.  I did not want to think.  I did not want to feel.  If I allowed it, I would hate it. 

We had a meeting with Dawn's doctor.  He told us that he ordered genetic testing for Trisomy 18.  However, these results take about 10 days to get back.  The nearest laboratory for genetic testing was in Utah.  We agreed that test should be taken so we would know exactly what was wrong with her and what to expect. 

I was supposed to go home four days after I delivered Dawn.  But, due to the circumstances, I was allowed to stay in this room for as long as Dawn was in the Neonatal Ward.  It was nice being able to get up in the middle of the night to see my baby.  I needed that.  I needed to be attached.  I needed to see her, to hold her, and talk to her.  However, I disappointed myself.  As much as I wanted to visit more often, I found it hard to do so without Paul.  I needed him there.  Very seldom did I visit Dawn by myself.  I felt guilty and ashamed.  I wondered what the nurses were thinking when I did not visit as often as I should have.  Did they think I was becoming detached from my child? 

It bothered me terribly to see her enclosed in a hooded bed with wires and tubes surrounding her.  I was afraid to see her suffering.  I was afraid to have her yanked out of my arms when I held her because she stopped breathing or because some other alarm went off.  I hated the fact that each time I visited, a nurse was always beside me.  I am sure she was supporting me like she was trained to do, however, I hated it.  I wanted and needed time alone with my baby without the presence of others standing there, talking, and reassuring me.  As I look back, my lack of visits, I am sure were self-protecting.  Protecting my own sanity, my own feelings, and emotions.  Maybe I was in denial and seeing her, brought her illness to reality.  I was protecting myself just as all these instruments were trying to protect my baby.

After a couple days, I felt better about visiting her.  I felt a bond beginning.  A bond that was so much needed for the both of us.  It was finally happening.  I was more emotional.  I smiled and cried when I saw her and held her.  I held her close as we sat in a rocking chair just for me and Paul to sit in as we held her, rocked her and sang "Rock A Bye, Baby" (1st verse) to her over and over again with each visit.  That song was written for her, no matter how morbid it seemed, it seemed  appropriate for her at that time.  Maybe it was our acceptance, maybe it was our way to preparing ourselves for the worst. 

1st verse: 
Rock-a-bye, baby,
In the treetop,
When the wind blows
The cradle will rock;
When the bough breaks
The cradle will fall,
And down will come baby,
Cradle and all.

When I visited Dawn by myself, I let my long hair hang in front of my face, blocking all view of the rest of the room as I brought Dawn's face closer to mine.  The parts in my hair allowed enough light in so that I could clearly see into her eyes as I sang to her in a whisper.  This was the only way I felt that she and I were alone, just the two of us.  I could not see any tubes, wires, machines, or movements about the room.  One of the nurses whispered to another how nice it was to hear a mother singing to their child.  Other than the occasional machine alarms or nurses talking, I felt this was the only way I could ever be alone with my baby.

The more frequent our visits, the more I began to accept that the nurses were there and we began to befriend them.  The nurses must have felt better about this as well.  They began to get excited to see us enter the room.  As one or more welcomed us to the room, they would inform us how Dawn was doing since our last visit.  I think they needed to see us visiting as much as we needed to see our baby.  They seemed to be excited that she was doing better and better as the days went on.

We were as active in her care as possible, doing everything possible that a parent could do, to include bathing and diaper changes.  We just did not come to visit we wanted to help in any way we could.  Paul was present when I changed her first diaper.  What a mess!  All this thick, sticky, pasty black poo!  I enjoyed every second of it.  I took my time.  I never wanted this simple task to end!  I felt like I was becoming a part of her life;  a necessary part of her life.  I was not just another face holding her.  This was my baby.  She started to feel like my baby!  What a feeling!

Dawn was unable to suck on a bottle or nurse from either of my breasts; she had to be gravity fed.  This meant that she had to be fed by tubes, syringes, and gravity.  Most parents have only two choices available, formula feed or breastfeed.  When it all boiled down, we too had the choice, formula or breast milk.  Paul and I thought this was not an option for us.  I had breast fed Alanda and fully intended on breastfeeding Dawn as well.  Only now, there was a new twist thrown in is all.  Breast milk is not only the best food for your newborn, but I emotionally needed to be a part of my daughter’s life and breast feeding, although it was through gravity feed, was a way to make me feel part of her life again.
Feeding Dawn my breast milk required me to pump the milk and put it in small jars or little plastic bags, gave it to the nurses to put in the freezer for a later feeding.  One of my jaunts down to visit Dawn and give the nurses some milk, a nurse named Robin explained what all the tubes, wires and gadgets were and their purpose.  She had explained this all before, but now it meant something to me and I was ready to listen and learn everything.  Robin explained everything in such a way that I felt comfortable knowing Dawn was well taken care of while we were not in the room with her.  

During one of my visits, I watched Robin feed my baby.  How sad to see my precious little baby unable to drink my breast milk.  I knew my milk was much better for her, but seeing it being gravity fed into her stomach was not quite, like I had expected.  I guess I just was not prepared to see it for myself.  Sensing my discomfort or maybe my longing to be the one that fed my baby, Robin asked if I wanted to hold the syringe and feed Dawn in the only way possible.  I asked a lot of questions, wanting to know all details involved, as I held the syringe.  I was feeding my baby for the first time…how impersonal!  It was nothing like I expected.  I wanted to hold Dawn close to me.  I wanted to look down and see her drifting off to sleep as she was nursing.  I could not do that.  Taped to her face was a skinny tube that went down one of her nostrils and into her stomach.  This was not how I envisioned feeding my baby for the first time.  Soon however it became part of her routine care as we took turns feeding her whenever possible.

I went home after 7 days in the Hospital, we were allowed to visit as often as we wanted though and spent almost every moment of our awake time with Dawn. 

When she was 11 days old, we soon got a phone call from the hospital.  They were asking us to come in because the test results were back.  We were scared and hesitant.  Dawn was doing so well, we could not help but hope the test results would somehow be in our favor, in Dawn's favor.  However, deep inside, we knew Dawn was not a healthy baby.  She was small and still being gravity fed at 3 weeks.  We could not help but compare her to Alanda who was in perfect health.  We knew she was not well.  We entered the hospital hoping for the best, but expecting the worst. 

Upon entering the conference room, I was taken aback by the number of people who were seated around the table.  I quickly sat down to the right side of Paul.  I noticed a box of tissues to my right and knew to prepare myself for the worst.  I felt the tissues were a dead give-away for the news to come.  I focused just long enough to hear the doctor say the test results confirmed that Dawn had full-blown Trisomy 18.  If it was not full Trisomy 18, she had some chance of life ahead besides living on an inhaler.  My heart sank, with it so did I.  I barely remember anything else but sitting there quietly sobbing.  Someone slid the box of tissues closer to me.  I did not even look up to acknowledge who it was.  We expected the worst, but the shock of hearing that the test results were positive was something we just were not ready to hear.  It was just as devastating as the first day the doctor told us of his Trisomy 18 suspicions.

We were now at the "now what" stage.  The room emptied and a priest came in to talk with us.  Paul and he talked for a few minutes as I sat in a daze.  I became alert enough to agree that Dawn should be treated for other ailments, but not for the Trisomy 18, which will take her life sooner than later.  We agreed not to prolong her suffering.  I was thinking about her quality of life in the future.  I did not want her to suffer any more than she had to.  That seemed to be our ultimate goal now.  We then signed a "do not resuscitate" order that would allow Dawn to pass away in peace.

Contrary to the test results, Dawn was improving every day, her apnea attacks vanished.  Every day she was more alert than the last and talk was on about taking Dawn home so we could spend our time with her.  Before we could take her home, we had to learn how to insert her feeding tubes.  I felt very uncomfortable inserting the tube.  Extra care had to be taken.  If the tube went into her lungs, then milk would flood her lungs and she would drown.  Somehow, I learned to adapt to this new feeding style and accepted it.  Soon, feeding became a time that I enjoyed and looked forward to.   

Time came for her to go home!  What a great but scary feeling this was for me!  I knew how to care for her.  I was not scared of my care, nor was I scared of her passing away at home.  I was scared of finding her already gone if I left her side.  During the night, I often awoke; wanting to check on her, check her breathing to make sure she was still alive.

I DID NOT want to find her already gone.  That, would be the worst feeling in the world and I did not know how strong I was if I had to handle such a situation.  What would I do?  How could I wake Paul to tell him?  Would I have to tell him…if he woke up, would he know without my having to say a word?

While she was home, I gave Dawn her first bath in a small green hospital pan.  I remember laying her in the warm water with my hand supporting her head and I squeezed warm water down over her chest and belly.  I remember laughing for the first time throughout this ordeal when she shivered like a normal baby during bath time.  I cherished this moment as I would squeeze more warm water on her and lightly blow onto her wet skin.  Without knowing it, my fun would really be over.  

Dawn was doing so well, the feeding tube started to become supplemental feeding!  Although we had to use a bottle so we could measure exact amounts, she developed the ability to suckle.  Her new found ability to thrive was dramatic enough that the doctors and nurses presented us with the idea of trying to get us home to Maine so we would be with our families, and they would have the opportunity to see her before she passed away.  

Paul was soon on the phone making Compassionate Leave arrangements for our trip home.  A lot more went into planning the Medivac trip than I had thought.  I figured it was a "gimme", but Paul was becoming frustrated at one delay after another.

Recovering from my own “major operation", I was weak and tired easily, but that didn't stop me from cleaning our apartment “quarters” for the move home.  I often rested where I was cleaning.  Sometimes I would fall asleep while I rested and woke as Paul was approaching.  Apparently, he was checking on my silence to make sure I was OK.  I remember that I quickly started cleaning again.  It was important for me to not let him know I was exhausted.  I would stand and feel faint and often have to sit down.  Hawaii was hot; and the pace I was working at, even our air-conditioned quarters was not cool enough for me.  Paul was constantly after me until I finally gave in and stopped.  He kept checking my incision.  Apparently, he thought I was not.  He has always been protective of me.  But I was finally seeing what I was doing to myself and had to stop.  I agreed to stop cleaning and packing.  I needed my strength for the family that I had.

The next thing I remember is that in the wee hours of the morning, we were at the hospital and ready to fly home to Maine.  Dawn had to be transported by an ambulance and I was to travel with her while Paul and Alanda followed with the car.  My mind seems to only remember parts of our trip to Maine, the closer we got, the more memorable Dawn's story becomes.  Once out of the ambulance, we boarded an Army plane headed for California.  On board were a few medical personnel and many injured people.  Some "patients" did not even look sick at all.  Since Paul was in the Military, he could fly on the plane, however Alanda and I had to be listed as Dawn's medical attendants.  That was the only way we could fly with her to Maine.  Unfortunately, we were not allowed to fly commercial due to the liability issues in case Dawn should pass away.  I did not know the ins and outs of this situation; at that point, I felt that Paul was my caregiver as well.  His encouragement and love was so warming and welcomed.  Without it, I was no one; I did not care about much of anything.  All I seemed to want to do was sleep.  

The flight across the Pacific was a nightmare.  It was basically like any flight you see in war movies where people are ready to jump off the plane.  Excessive vibrations to the point that our ear drums vibrated as well.  Some seats were available, but some of them were made of net material.  Everything in the plane was exposed to include dripping pipes of condensation, no air vents, poor air pressure regulation, etc.  The flight was far from pleasant.

Once in California, we were literally stuck at the hospital on Travis Air Force Base for 5 nights.  We were waiting for the next scheduled Medivac plane that would start our journey cross country.  Unknown to us until our arrival, the planes leaving Travis and arriving from Hawaii do not match up at all, making a scheduled 6 day layover.  It was a very frustrating time.  Almost immediately, we noticed a change in Dawn's condition.  She was no longer able to suckle on a bottle.  From that point on, she slowly got weaker.  Apparently, the roughness of flight over the pacific took its toll on her frail body.

Finally, we can leave Travis AFB.  Does this mean we will be home that day?  No, sadly, not even close to it.  Again, the Medivac flight schedule sends us zigzagging across the country, up and down, some landings taking us further away from home than the previous one.  It took us 36 hours to fly from California to Andrew's Air Force Base in Washington, DC.

The planes are more comfortable DC-10's, however the seemingly countless altitude changes are taking their toll on Dawn.  Each leg weakens her even more.  We are providing her the best care we can in the cramped seats.  Of course, we cannot forget about our daughter Alanda.  She is still in diapers herself and requires her own care and attention.

In Washington D.C., I seemed to have more of my wits about me, but we were both exhausted.  For the first time in our journey, nurses actually checked on and cared for Dawn.  Seeing how exhausted we were, the nurses asked if we would like a break from her care and we graciously accepted.  She was put in a nursery or a neonatal ward where she was closely monitored.

The best news was that we were scheduled to be home the next day, after several more take offs and landings.  The bad news was that shortly after we left Dawn in the neonatal care unit, the nurses came back to our room.  Upon examining her, the doctor found her condition to be worse than we imagined.  Her lungs were filling with fluid and was deteriorating fast.  She was now in an oxygen filled hood and heart monitors again.  I do not think that really sank in with us that evening  as we had been through so much with her.

Then the phone rang the next morning at 6AM, about 3 hours before our scheduled departure.  It was the nurses, telling us Dawn's heart rate was dropping.  It did not sound too bad, since a rapid heartbeat indicates heart failure, so we thought.  In this case, a slow heart rate meant the heart was tired.  In not so direct words, they were telling us she had moments to live.

The Power Of Love is amazing!  Immediately after we made eye contact with her, boom... her heart beat returns to normal.  We took turns holding her, momentarily breaking that eye contact in the transfer of arms.  The second we lost eye contact with her, her heart rate would drop back down and sound the alarms.  Eventually, one of the nurses reached over and turned the alarms off one by one.  As we held Dawn, we held a brush by oxygen tube next to her face for easier breathing.  Another  nurse volunteered to hold the tube for us so we could concentrate on those last moments with our daughter.  Again, each time our eye contact broke from hers, we could see the monitor gages start to drop dramatically.  She needed that eye contact and we made sure we kept it. 

A priest came in and gave Dawn her Last Rites and Confirmation as he cried along with the rest of us.  This little room was so memorable.  Some nurses could not take the sadness of watching a baby die in its parent’s arms and left the area crying.  Some stayed and offered support in silence as their eyes kept monitoring the gauges and our love shining upon our baby.

After a while, the nurses started commenting that her machine gauges were up to normal.  This surprised everyone.  On a hunch, one nurse reached over and flipped some machines back on.  As suspected, the gauges were back within normal ranges and stayed there.  The tension broke!  Grins, smiles with chuckles could be heard in the room from the nurses, doctor, and priest alike.  As she continued to hang onto her life, the moments she had to live turned into hours.  Paul and I were smiling, but we knew this close call was too much to rest easy.  

It was decided to try to still get her home to be with family.  They actually changed the flight schedule to fly directly to Maine.  We called our families and had them waiting at the airport in Maine telling them every minute you can save to try and see her, may be the last chance you have. 

I had to go on a military airport bus with Alanda that was zigzagging across the airport run ways to bring others and us to a plane waiting nearby.  Paul went with Dawn in the Ambulance, maintaining contact.  Once up in the plane, we were all joined again with Dawn.  She was placed at the back end of the plane in an incubator type crib.  

I was concerned with her flying, wondering how are they were going to ease her discomfort of the pressure as we gained altitude.  We stood by her side, taking turns reaching our hands in through the small holes to hold her hand or stroke her cheeks.  Soon, too soon, time came to have us take our seats.  The nurse told us she let us stay with Dawn as long as she could.  By airline regulation, we had leave Dawn to take our seats and buckle up.  The woman was very pleasant and reassured us that just as soon as the plane left the ground she would come get us and we could go back and be at Dawn's side.  I hated to leave her side and had a gut wrenching feeling the second I did.  I bent down and reached my hand to touch Dawn one last time before we took our seats and told her "I love you.  I will see you in a few minutes.  I love you."  Then it was Paul's turn.  He seemed more at ease leaving her side, but the softie he is, he hated to leave her side period.  As he gave her a smile, he whispered, "I love you, Dawn."

As the plane was taxiing down the runway, I glanced ahead at the people in front of us along the isles.  I wondered what they thought about stopping at Bangor first instead of its original route.  Someone told us that the crew had already explained to the passengers the reason for the route change.  We were also told that the passengers were more than willing to change routes after being told of the situation.  I felt thankful.  I wondered what would happen if some snotty nosed Captain or other passenger declined to take the alternate route.  Would the route be changed anyway?

We no longer than got seated and buckled as the plane increased its speed down the runway.  All of a sudden, the plane started decreasing as a man tapped me on shoulder, leaned over, and spoke to me.  At first, I did not hear or understand what he said.  He repeated louder, "I think your daughter has just aspirated."  I had never heard that word before, but I knew it was not good.  Instantly, I looked at Paul as he asked me what the man said.  My expression and instant movement for my seat belt told him everything.  Instantly we were at Dawn's side.  Dawn continued the fight to live, until we left her side...until we broke eye contact.  The instant I saw her, it  was obvious that she had gone from our life to the next stage of hers.  

We were allowed to stay by her side while the plane turned and taxied back toward the airport.  I was saddened by her loss, but felt myself sink into what seemed now like my favorite and secluded "zombie state".  As I stood by Paul and Dawn, I do not know if I cried or not.  I looked down the aisle like I did just a few moments before.  I saw no reaction as the plane was turning around and taxing back to the airport terminal.  I wondered if the passengers knew.  I wondered if the pre-warned passengers already knew of our loss.  I vaguely remember a man dressed in fatigues standing at the front of the passengers.  He did not seem to be saying anything, but then he left or I looked away.  I do not know which.  Maybe he told them.  Maybe he did not have to.

Once back in the Hospital, we were allowed visiting time with Dawn to say our good-byes.  It was so hard to let her go, but alas, she was not suffering any more.  After taking care of things associated with her passing, we knew it was time to get back to Maine.  Dawn was going to Maine on a flight that evening, so Paul approached the flight nurse about getting on that flight.  He was told, 'You can fly to Maine, however your wife and daughter are no longer needed as medical attendants because Dawn died.  They need to find their own way home.'  Just what we wanted to hear after losing our baby!  Now what?  We had no way home.  Those words scarred Paul for the rest of his military career. 

Luckily, a nurse named Dawn, volunteered to bring us to the airport on her own time.  She told us when she would be ready to leave and we made sure we went with her.  I thought, how appropriate, Dawn, our Dawn, was still looking after us and found another Dawn to help us get home.  It was somehow meant to be.

During Dawn's visiting hours prior to the funeral, Paul and I stayed near Dawn's tiny little casket as family and friends came up to give their condolences.  This was depressing for me.  People were in tears, all the hugs and kisses.  Eventually, I floated and mingled amongst family and friends away from the casket area.  Out here, in the "audience", I could breathe better.  I felt better.  I kept looking up at Paul and one person was constantly smothering him after another.  I felt bad that I "abandoned" him, but I had to find more air away from the center attraction.  Out here, in the audience, it seemed that I was also the center of attention.  I did not like this, but I ignored it the best I could.  Family was shocked that I was someone jolly.  I smiled as  I asked each how they were doing.  We joked and laughed.  I got some really weird looks, like I should be up weeping and making a scene playing the “poor oh pitiful me, I just lost my baby, look at me!” role .  Well, I thought, Look at me!”  I know some thought I was in denial or gone crazy.  One or the other.  I explained to a small group of family members, 'I watched her suffer.  She isn't suffering any more.  What more could a mother ask of her dying baby?'  Some understood; some just dropped their mouths and gawked.  I knew they would never understand until they have been through watching their child suffer until death.  How could they understand?  I felt OK with my thoughts and emotions.  It didn’t matter if others didn't.  I was OK.  We were the ones that mattered.  We were the ones that went through it.  No one else had to understand.  That was OK, too.

Dawn was buried at a family cemetery lot in Palmyra, Maine where we knew we would eventually return to live out our lives.  She is buried beneath a pine tree in the rear of the cemetery, up against the tree line.  Engraved on her gravestone are the words,  “Thanks For Your Time.” Also engraved on her stone is a rose and a Teddy Bear, both of which she was buried with.  Our daughter, Alanda (then 2 ½ years old) put a beautiful baby’s breath stem in her casket for something to remember her by.  

To this day, I can still see Paul with tears running down his cheeks as the doctor first introduced the words Trisomy 18 into our life long vocabulary.  It is a vision that whether I like it or not, is burned into memory.  I have another vision burnt into memory.  It is the vision of seeing Dawn for the first time after her death. It is said that trauma is an unshakable vision.  After 12 years, I have to believe that.  Though those visions are permanently etched in memory, I am fortunate to remember anything at all.

Dawn lived to be 32 days old.  Though her passing is a difficult one to live through, as a parent, we feel very fortunate that she lived as long as she did.  I often think that loosing an infant at 32 days has to be much easier than having a miscarriage.  Others tend to disagree.  However, in 32 days, I got to hold her, sing to her, give her a bath, talk to her, feed her, changer her diapers and take pictures of her.  Those who have miscarried, are not so fortunate.

I am not looking for any sorrow or sympathy here.  Those of you who are my family and friends know me better than that.  I am simply trying to tell you to hug those you love and tell them often that you love them!   I do not live in the past, but thrive to LIVE day to day to the fullest for the love ones that are no longer with us.   If you think I act crazy, am too brave or stupid for my own good....I say, GOOD!  I am LIVING.  I suggest that YOU do the same while you can!