Not a creature was stirring

The house is quiet. As I look around I see remnants of Christmas. Scattered boxes, wrapping paper and a few toys that didn't get picked up. The tree is still up and lights our dark living room. A stocking full of Santa's delivered loot is hung with two wrapped presents nearby, temporarily untouched.

Spencer will be home in six days. The stocking will be dumped and the presents from Santa will be ripped open in a flurry of excitement. The decorations will be taken off the tree before it is removed from the house. The boxes and paper will be thrown away and the toys put in their place. The house will be bustling with activity again.

These last six months I have tried really hard to not allow myself to dwell on what I would be missing out on with Palmer. I have allowed myself only two 'indulgences' of sorts. Both of my boys would have been six months old at Christmas so I often use Spencer's milestones to indicate what Palmer would be doing about now. My first indulgence is wondering if Palmer would be crawling. Spencer crawled for the first time on Christmas eve. My second is an image I have of Spencer sitting under the tree with Scott getting ready to open a present.  From birth pictures, my boys look so much alike. I can only imagine that being Palmer under the tree. I had been relying on my memory until finding this picture on Christmas day.

As I sit here tonight in the dark, I can only count my blessings. I was blessed to view Christmas through Spencer's eyes. I watched his excitement as he opened his presents, played with his new toys and tried on his new jammies and Agent P slippers. I watched his eyes light up as Scott and I opened our presents that he picked out all on his own. If we didn't have Spencer I can only imagine what this holiday would have been like. As I sit here in the quiet, reality is rearing its ugly head. I can only think of the other moms and dads who spent their Christmas in a quiet house. No frenzied excitement.  No wrapping paper strewn about. No toys to step on or pick up. Just deafening, painful silence.

With Sprinkles on Top

Oh sweet baby ~

I can't believe it has been six months already. Holidays, birthdays and of course the six month mark all seem to be the tough days to get through. So I wasn't quite sure what to expect of today ~ but all I felt was peace ~ no anxiety or sadness. It felt similar to the day you were born. So incredibly peaceful. Carys' mom remarked how she hoped we would  touch heaven the day you were born. I have to admit, I was sort of confused with what she said. How could we touch Heaven?  She said the feeling was unbelievable and truly an experience we wouldn't mistake. She was so rooted in her faith that I knew I couldn't question it, just be open to what was about to come.

I figured out pretty quick what she was talking about. I have never experienced such an overwhelming sense of peace and tranquility as we welcomed you, a tiny, perfectly formed child of God into the world . I believe part of our comfort that day was to experience just a portion of what was in store for you when you were welcomed Home. Your dad and I weren't the only ones who felt it. Complete strangers talked about the peaceful atmosphere surrounding our room. It was undeniable. Today was no different.

I thought tonight we should have birthday pancakes to celebrate your six month, heavenly birthday. Pancakes, special peanut butter, sprinkles, chocolate chips and candles. Your brother was so excited to celebrate and blow out the candles, but I think you already know that.  Happy six months sweet baby, happy heavenly birthday to you.

That Mom

At this time six months ago we were welcoming family and friends to our home in the anticipation of Palmer's birth. It was a happy time mixed with the fear of the unknown.

Since Palmer's birth, society has painted me into 'that mom'.

That mom whose baby died. Oh yes. Don't you remember me telling you about her. She is the one who had that baby that died. No. Babies don't just die. She must have had a miscarriage. Yeah. A miscarriage. That sounds better. If we call it a miscarriage it is easier forgotten. Besides no one actually knows their baby will die before it is born. So yeah. It must have been a miscarriage. There is no way she willingly carried him to term knowing he would die.

Oh no. Here comes that mom. Don't make eye contact. She might start talking about her baby that died. We can't let her bring it up or mention it at all. Quick. Turn the corner. Oh I hope she didn't see us.

That mom is crazy! Who thinks rain can make you feel closer to your dead child. I hope she feels comfort in all that delusion she is living in.

Oh. Its that mom. Oh poor thing. Well lets make sure we are super supportive but please, at all cost, we need to avoid mentioning her babies name. Christmas is coming and we just can't say his name out loud. We don't want her having a break down at the mention of his name.

That mom. *sigh*

I really hate to burst some bubbles out there but I am not that mom. Who I am, is that mom who delivered a full-term infant who was born with a beating heart. I am that mom who loved her son unconditionally, and yes, chose to continue a pregnancy knowing the end result would be death either during birth or shortly after. I am that mom who mourns her son in her own way and on her own time and will not be told that she is doing it wrong.  I am that mom who continues to embrace the plan God has for her son and who rejoices in the fact that she has an angel looking down on her from Heaven.

I am that mom who wants to talk about her son ~ especially during the holiday seasons and those special anniversary dates. The moment we stop talking about those we lost, is the moment we forget about them. I am not going to crack or crumble at the mention of his name, but I will if he is forgotten. I am my own person and will never let society paint me into 'that mom'. I am Palmer's mom.

What is Normal?

The last month has been a whirl wind in the Lees household... school, homework, class parties, doctor  appointments, work, work and more work it seems... but finally we find life starting to slow down a bit.

Three weeks ago we took Spencer to Children's Mercy in Kansas City for his testing. We anticipated the echo under sedation followed by a heart cath to fix a defect. Overjoyed is what we felt when his cardiologist explained in the post-surgery consult room that the area he was concerned about was normal and a heart cath was not necessary. This 'area' had a very obvious difference in thickness from the rest of the ovale... it trailed off to a very thin membrane. There is no danger with it being thin, all the area needs to do is stop the blood flow between the chambers in the heart. Scott asked him directly if it closed off on its own over the last three months. We were answered with a smile and misty eyes and told we could take him home as soon as recovery released him.

This was a huge weight off our shoulders. For the first time this year, we felt like we could finally relax. I didn't realize how stressed I was until about a week before his procedure. I couldn't focus on the simplest of tasks. I even left my car keys laying on a shelf in the mall... so out of character for me. The evening we brought Spencer home from the hospital was the first night I actually had continuous and rested sleep since January.

Three weeks ago also marked the end of Scott's travel time for the season. He is home now until May with his suitcase unpacked instead of waiting by the door. Our routine has started to fall back into place as we try to figure out our 'new norm' as a family. Most days I question what 'normal' our life is supposed to hold. Our normal consists of a five year old proudly proclaiming he is looking for the 'perfect shade of pink and purple' flowers to take to his brother. Or asking to buy 'awesome' toys in duplicate to leave at the cemetery so that his brother can fly down from Heaven to get them. Almost daily I get asked when I will grow another baby in my belly... a baby that won't go to Heaven right away. Try answering that one without crying... and then try to explain why you are crying.... then wake up the next morning and go about your day while you listen to parents complain about the 'trials' of pregnancy or how hard life is with a newborn. Normal is looking through Spencer's school work and finding the 'family' picture he drew. A picture that includes Scott, myself, Spencer and Palmer. On the outside looking in, we may appear normal... but our normal always takes on a different twist.

Our new life does not always seem to fit the typical family mold... in some ways... but we are doing our best to grow into it each day. The part of our 'normal' that will never change is love. The questions may be tough and we may not have all the answers, but our love will never falter. As Spencer said last night, 'Mommy. I love you all the way to where my brother lives and back again.' I guess that is even better than the moon....

His Willful Heart

October 15th is Pregnancy and Infant Loss Remembrance Day.

I have been going through mementos, photographs and keepsakes over the last few days. This was an impromptu recording taken on Palmer's birthday with my Blackberry. Palmer was very active and did not cooperate with the fetal monitors that day. Timing was of essence and critical for him to be considered for tissue donation. We ended up agreeing to check his heartbeat every hour during labor to document if his heartbeat was still going strong.  Each passing hour was emotional for everyone in the room... family, friends and staff. There was always a collective sigh of relief when the rhythmic pace was heard. Reality may have been waiting around the corner, but those moments belonged to us.

I will always cherish this sound. So in honor of Pregnancy and Infant Loss Remembrance Day, and remembrance of my son, I will share this memory with you. On the right hand side at the top there is an audio player entitled "His Willful Heart"... before you press play, please mute the audio player at the bottom of the blog. The recording is quiet, so you may need to turn your computer volume up.

Thank you for allowing me to share my son with you.

A little George Straight 1982

Gotta get out of here, get it all off my mind...and like a memory from your grandpa's attic...a song comes slippin' through the radio static...changing my mood...get lost and get right with my soul.... 

Have you ever listened to a song and found yourself completely lost in the lyrics... transporting yourself to a different place in time.... Have you listened to a song and thought the words fit your life nearly perfect? I spend a lot of time listening to music...when it comes down to it,  more than I realized.... ten hours a week for my work commute, eight hours in the background at work each day, approximately four hours a week on the lawn mower, and then I always have something playing on the weekends while I am doing chores. This weekend while I was logging my lawn mower hours, I started to analyze my iPod play lists. Lets just say it is eclectic mix... But the one thing each song has in common, is how they fit into my life. Snippets of songs have told my story.. conveyed my feelings....marked my emotions...provided an escape....brought a smile to my lips... When I struggle with words to express my feelings or struggle to make sense of my life, I let the lyrics in my play list do the work....

 the hurt... the pain...

life ain't always what you think it ought to be.... ain't even gray but she buries her baby... the sharp knife of a short life.... I've had just enough time...

 Lying in my bed I hear the clock tick and think of you... Caught up up in circles...confusion is nothing new... After my picture fades and darkness has turned to gray....watching through windows you're wondering if I'm OK.....

Every time I think of you. I always catch my breath... And I'm still standing here...And you're miles away... And I am wondering why you left.... And there's a storm that's raging through my frozen heart tonight. ....

 the hidden reality....

she never slows down...she doesn't know why... but she knows that when shes all alone  feels like it it's all coming down... she won't turn around... the shadows are long and she fears  if she cries that first tear... the tears will not stop raining down... so stand in the rain.. stand your ground... stand up when it's all crashing down.. you stand through the pain... you won't drown...and one day what's lost will be found....you stand in the rain... she won't make a sound...alone in this fight with herself and the fears whispering if she stands she''ll fall down... she wants to be found... the only way out is through everything she's running from... wants to give up and lie down...so stand in the rain... stand your ground... stand up when it's all crashing down... 

People say that I am brave but I'm  not... truth is I'm barely hanging on.... 

anger... frustration....

what do you want... what do you want from me.... are you trying to bring back the tears or just a memory... you keep taking me back to where I have already been....what do you want from me... I get so tired of living like this...  to find the things to keep my mind off of you... what do you want me to say..

to find a release from reality... a release from the pain.... or to transport me to a time when I was carefree...

 progress.....

It's been a long road and a million tears. I'm moving slow but I'm moving on.... The sweetest memories still remain... time and fate can't be controlled... you play the hand that you're dealt and the dice that you rolled... and  who am I to question God anyway...well these days when I look back,  I know I am blessed to have been loved like that... I still miss him every day....with no regrets... and peace of mind... lived so much in so little time...I'm so glad, when he was here, he was mine....from the day we met... to the night he left... I loved him... with no regrets....

  hope...

send me away with the words of a love song....lord make me a rainbow I'll shine down on    my mother... she'll know I'm safe with you when she stands under my colors...

it's like a storm... that cuts a path... it breaks your will... it feels like that... you think you are lost... but you are not lost on your own... you're not alone... I will hold you tight and I won't let go... it hurts my heart to see you cry... i know its dark, this part of life... oh it finds us all...  we are too small to stop the rain, oh but when it rains.. I will stand by you, I will help you through when you have done all you can do and you can't cope... don't be afraid to fall... it won't get you down... you are gonna make it... I know you are gonna make it....

life ain't always beautiful... but it's a beautiful ride.... 

a bigger picture .....

but there's a greater story... written long before me... because he loves you like this... i will carry you while your heart beats here... long beyond the empty cradle through the coming years....i will carry you.... all my life... I will praise the One whose chosen me to carry you... such a short time, such a long road... all this madness but I know.. that the silence has brought me to his voice... 

an escape....

memory lane up in the headlights... has got me reminiscing all the good times...

          listening to old Alabama... driving through Tennessee... 

Turn the quiet up... turn the noise down... let this old world just spin around... i wanna feel it swing... i wanna feel it sway... put some feel good in my soul.... act like tomorrow is ten years away... kick back and let the feelings flow... 

My emotional play list will be an evolving process...  some days will be stuck on repeat... some days will rewind... and others will fast forward... but at the end of the day it will be an acoustic version of  me finding my balance and getting right with my soul....

How far will your ripple go?

Last week, we were invited by Midwest Transplant Network to participate in their yearly calendar. Each year they select 12 individuals from a pool of deceased donors, living donors, recipients and those on an organ waiting list. We were honored to be asked if Palmer could be featured. This involved going to Kansas City as a family for a photo session and filmed interview in a professional studio. I can not begin to describe the intimidation from the studio and the pure, raw nerves involved. Well you know me. If I am going to do something, I want to do it right. I left there feeling like I let Palmer down by doing a poor job sharing his story and how we came to our decision to donate. For as hard as it was emotionally, I wished I could have a do-over. For someone who has blogged her journey to anyone who would read it, I really came short with words. All I can say is that it was not eloquent and I am afraid I didn't make much sense. Combine the bright lights, camera, nerves and all the thoughts running through my head and I am afraid it equaled a mess. I know it was hard for Scott too. You have heard me talk about couples having to grieve separately and together. Well take two people who have not grieved together since their son's funeral, have a complete stranger ask some very personal questions and then record their every word and movement... I think you get my drift. Even though it was hard, I have no regrets. Even if our footage ends up on the cutting room floor, we made progress as a couple. So based on some questions they asked, I thought I would try a  'do-over'.....

My name is Jenny and this is my husband Scott. We are your average farm family living in north east Kansas.

We came in contact with Midwest Transplant Network while I was pregnant with our son, Palmer. At twenty weeks into the pregnancy, through a routine ultrasound, he was diagnosed with anencephaly. Anencephaly is a neural tube defect that is 'incompatible with life'. There was no guarantee how long he would survive... a few minutes, hours or days at most. After receiving his diagnosis we researched the possibility of  tissue donation. His organs were too delicate for harvest, but his heart valves were a possibility if he met certain criteria. Our experience with Midwest Transplant Network was absolutely wonderful. They fully explained the donation process and offered wonderful support. A caring and compassionate nature was our first and lasting impression.

In hindsight, our decision to donate was easy. I say this simply because it was always the right thing to do.  We are both registered donors. So really, why would we choose anything different for our children. But after you are given the news that your child will die, your thinking is not clear. The cliche 'our world came crashing down' becomes your reality. Simple tasks became unbearably hard. Our life seemed to come to a screeching halt. You question your strength and ability to continue a pregnancy that will ultimately end in death. But as you question your strength, you realize that you love this little being with all your heart and soul. Then you start to think about the other families who have been told that their child will die unless they receive valves. Each day, they watch their child slip away, fighting to live. This was our opportunity to turn our loss into someone else's hope. The days I wanted to lay in bed and ignore the world, I thought of these families and what donation would mean to them. Donation became my ray of light. It was my reason to get out of bed, put myself together and live my life for my child and the recipient family. Through donation I learned a new appreciation for celebrating the life of my child.

Each criteria milestone we met was a reason to celebrate. On the day of his delivery, the wild card was his weight. After he was born, the nurse reported his weight at 4 lbs 13 oz. I knew this would not make the cut and our nurse confirmed the news that he was rejected for donation. I was devastated. I remember looking up at Scott, watching him unwrap Palmer and listening to him say there had to be a mistake. He said he knew he weighed more based on his chest size and he demanded a reweigh. Scott was right. His weight was off by 3 ounces. Two families were gifted heart valves because of my husband. He often will say that I did all the hard work during the pregnancy. But I think those two families would agree, that his role that day was just as important as what I did the previous 9 months. That night, we were allowed 12 hours with Palmer before we had to give him up. We chose to give him to the harvest team a little over 4 hours after his heart stopped beating. We knew the sooner his valves were retrieved, the sooner a family would receive 'the call'.... the call that valves were available for their child.

Regardless of your situation or circumstances, consider donation. Talk about it with your loved ones and make your decision known. We all leave a ripple in life, reaching out and touching lives. Donation is a gift that leaves a ripple and touches more people than we really will ever know. Do your part and keep your ripple going.

Butterflies

This post is for my Aunt Laura and Aunt Kristy.... whether you realize it or not, you both push my writing out of my comfort zone and embrace what comes from my heart...I have been struggling for the right words for the last few hours... trying to find the right words to explain a topic that is taboo... but I guess I will stick with my 'open and honest' policy ....

During the time after Palmer's death and before his funeral, I found myself talking to him late at night. Unable to sleep and curled up with a stuffed giraffe, I would close my eyes and start talking. At first I would see small flashes of dim light. By the time I was done talking and saying what was on my mind and in my heart, the light would be strong, steady and bright. There was always a sense of peace after these conversations.

Since his funeral, I have been trying to juggle the pieces of my life. Trying to figure out how these pieces will fall back into place has been a challenge. Not only am I working through my grief, I am trying to help Spencer work through his. Between our grief,  my efforts to get Spencer settled in school and getting  my work schedule back on track, I lost my time with Palmer. The last few weeks, life in general was kinda rough. It was safe to say I was physically, mentally and emotionally spent. My heart ached and my arms felt empty. It was during my lowest moments that I realized these conversations filled a void in my life and they needed to start again.

There were no flashes of light this time. Rather, I started seeing butterflies.

At the mailbox. By the front door. Following the lawnmower. At the cemetery. Picking vegetables.  Every time I turned around I would see one perched watching me. I would like to say, that just because we live in the country, butterflies have not been a common sight. Actually, I could probably count on two hands the number of butterflies I have seen in the last two years. One night in particular was Spencer's first day of school. When I came home, there were two butterflies waiting by the front door. As I walked up the sidewalk they both swarmed at me and swirled around my head. They took turns resting on my shoulders, one on each side. They kept this up for a good 15 minutes until Scott got home. When he parked his truck, I could tell by the look on his face that he couldn't figure out why I was spinning in circles with an odd smile on my face. I explained to him the symbolism of butterflies. That some believe it is the transition between life and death, a sign from our loved ones that they are alright. It is also a sign of hope. He then asked me about the significance of dragonflies. He went on to explain that during the last week, he had a swarm of dragonflies riding along on the cab of the combine. For him, regular bugs are a given, dragonflies are not. My only thought was that Palmer sent him the manly version of a butterfly.

I thought more about the movements of the butterflies. It was almost like a kid who was really excited to show or tell something. I imagined this is probably how he would act bringing a new friend home. "Hey mom! Meet my new friend!" The trailing butterfly reminded me of Spencer and how he often follows me around wanting to help out or just curious as to what I am doing. Sort of like "Hey mom! What are you doing? Can I help?" It left my heart lighter and happier.

I have seen fewer butterflies since the bumps have evened out. Perhaps they will return when the next rough patch hits. Some may say the timing and actions were purely a coincidence. I prefer to see it as a reminder of a beautiful life.

A Week in My Shoes

My grief cycles. I go for a stretch when my emotions are pretty even. Then out of the blue the sadness creeps in and the tears threaten at the most inopportune moments. At times I can't shut it off nor do I want to. It is part of the process I must face. There are times I wonder how much I can handle and how much more will be thrown at me. This week was one of those times....

It was a week of Scott leaving, coming home and leaving again. Spencer starting kindergarten. My mother-in-law having knee surgery. A wonderful co-worker and friend moving on to another job. My dad having surgery to try to fix an extensive blockage in his thigh. Attending a picnic by the transplant network for donor families. Spencer slamming his hand in the car door. Dealing with a screw in my tire on my trip home from Kansas City and then trying to get someone to fix it on a Sunday. Oh, and sinking into Palmer's grave up to my calves. I think that about covers it in a nut shell.

Tuesday seemed to be my breaking point. It was open house night at school for Spencer. I went in nervous for him and for me. This is the time where your parenting skills are put to the test. You want your child to be respectful, listen and get along with everyone. You can no longer be with them and make sure they are doing what you have taught them to do. I don't want my child to tease anyone or to be teased himself. I don't want him to be the kid left on the playground that no one wants to play with. I remember how that feels. The feeling of rejection and not being 'good enough' will stick with you for a lifetime. Then I started to see the others walking in as families...mom,dad and siblings. Let me preface with this: I have really tried hard during and after my pregnancy to not focus on what I would be missing out on with Palmer's death. Seeing families as a whole pushed me to the edge. Jealousy is a word that has several components to it.  Am I envious? Yes. I want siblings here on earth for Spencer. Am I bitter or resentful? No. How can you resent someone for being blessed with healthy babies. Sadness and defeat would be more appropriate. Sad for Spencer for not having a sibling to grow up with. Feeling like a failure as a mom and wondering what I did wrong to loose two babies in a little over a year. 

That same night, I found out that later in the week there would be a burial a few plots over from Palmer. We had a storm a few nights before and I needed to stop and tidy up his flowers. I was already on the verge of tears and as I was walking around the edge of his grave, I sunk in to my calves and half-way fell down. Spencer and I went home, loaded the car up with a bag of dirt and headed back to fill in the holes. After he was in bed I couldn't stop the tears.

Fast forward to Saturday. I told Spencer that the picnic was a party of sorts for Palmer and other people who had gone to heaven. We haven't explained about organ/tissue donation and won't for a while. But I wanted him to know that people other than us felt his brother was special. This opened the door for more conversation on the way home from Kansas City. He again asked why his brother's head didn't grow right and if I would grow another baby in my belly. He went on to tell me that the other kids in school had brothers and sisters and he wanted his brother back so that he could tell him all about kindergarten. Today I found Spencer talking to God. He was asking Him to fix his brothers head and send him back down because he missed Palmer. The words combined with the pleading look on his upturned face was more than I could handle as the tears started again. 

Those tears have run dry and my heart aches a little less. Tomorrow is a fresh start, a new week begins as does a new cycle of grief. 

Break the Silence

Day of Hope- "August 19th is a day to break down the walls of society that keep pregnancy, infant and child loss a hush hush subject. People view the death of a baby as just a sad thing that happened.These babies that die are not sad things that happen. They are people, much loved and wanted children. They are brothers, sisters, nieces, nephews, grandsons and granddaughters." ~Carly Marie Dudley~

I started this post last night after my semi-crazy day and just couldn't seem to finish. The words just didn't flow. I am not sure if they will tonight, but regardless, yesterday was the Day of Hope. But honestly, every day should be a day to break through the silence...


The 'taboo-ness' of child loss  is something I have struggled with lately. Struggled in the sense that it really bothers me that it is rare to find someone who does not shy away at the mention or thought that my child has died. Let me go back in time a bit.  My pregnancy and  miscarriage in 2010 was not really known about by very many people. My belly did not grow to show a physical reminder that I carried a child. We wanted to wait until we were out of the first trimester to share our joy.... only to have our joy shatter into a million pieces as we watched our baby float lifelessly on the sono screen at our 12 week check.  About two weeks after we miscarried, someone asked me when we were going to give Spencer a brother or sister. I shared that we miscarried and there was a look of horror on their face and the subject was quickly changed. It was enough for me to never mention it again. I wanted to so badly, but I couldn't handle that look again.  Instead, I cried myself to sleep each and every night for two months. That was how I coped. In silence and tears and alone.

Another year passed and we were going to loose Palmer. Except this time, the size of my belly proved a life was growing inside of me. It was hard to explain to someone that Palmer would die, especially when his life was so abundant. I have a public job and encounter roughly 75  people in person and on the phone on any  given day. I have known the majority of these people for the last 11 years. Some have become like a second family. We share in each others joy and pain. Some days I couldn't handle the questions so I hid at my desk where  my belly was not in sight. I waited to walk down the halls and into the lobby when the coast was clear. But other days, I had to deal with it. When my pregnancy was acknowledged, I gave full disclosure about his condition.  I hate awkward moments. I hate the elephant in the room.  I never wanted the awkward question of "How is your baby doing?" to pop up in conversation down the road.

It seemed that my efforts to explain worked only partly. Some either forgot that he had a terminal diagnosis, didn't pay attention or completely misunderstood me. After I came back from maternity leave, I heard a lot of "How are you?". I learned quickly that there was a small majority of people who actually wanted to hear an answer. My skill at reading body language was honed pretty quick. Quick enough that the word 'fine' became my go-to answer. My heart broke a little each time I uttered this word. Some days I thought that it would be easier if people would just leave me alone and not acknowledge my loss. Occasionally I would have someone ask that truly wanted to listen. They asked to see a picture and verbally said they didn't buy my automatic answer of 'fine'. 

I hadn't heard of the Day of Hope until I saw a posting on Facebook  by Holly, a fellow anen mom. The concept really touched my heart and made me realize we all need to do our part to help bring those walls down. My blanket answer of 'fine' was getting me no where. I was enabling others to slip quietly behind the walls of silence. Silence that is painful and full of rejection ~ rejection of a child that was loved and wanted so very much.  Each time I talk of my miscarriage and Palmer, my grief lessens and those pieces of my heart inch closer together. For that reason alone, my silence ends. I encourage you to do the same. If you encounter someone who has lost a child or loved one, look them in the eye and tell them you are sorry for their loss and that their baby mattered. We often forget how our words and actions can affect someone.  Never make someone feel like their child was not worth living.

Irony

A little over two months ago, we said good bye to our baby. By the grace of God, we were able to donate his heart valves to be used in two other babies who had either diseased or damaged valves.

The day before I went back to work, we were told that our 5 year old  may have a problem with his heart valves as a murmur was confirmed at his well-child exam. We were sent for further testing and then onto a pediatric cardiologist this past Tuesday. Turns out that his heart murmur was a functional murmur... meaning nothing to worry about. Incidentally, they believe they found a small hole in either the septum of his heart or in the foramen ovale. These types of defects are typically found right after birth. Usually the child turns blue when he/she cries or there is a failure to thrive. Spencer showed none of these qualities after birth or even now for that matter. This type of defect can not be heard, but only seen on ultrasound.  If left untreated, the heart muscle becomes damaged and there is a risk of stroke. We are currently waiting for a phone call to see when the next test will be scheduled. This will be a trans-esophageal echo under general anesthesia performed by the cardiologist in Kansas City. If he feels this defect can be fixed, they will proceed immediately with a heart cath to repair the area. Right now, he is not in any danger and his heart muscle does not appear to be damaged.

When the cardiologist was taking family history, he asked Spencer if he had any brothers or sisters. This was the first time Spencer has been asked this question and he didn't know how to answer. He looked at me for guidance and started to shake his head no.... only for me to reply yes. The cardiologist looked confused until I started to explain about Palmer. There was a recognition and tears in his eyes when I mentioned heart valve donation. One child with perfect valves. Another with a heart defect. A reminder that I have not only one, but two children with willful hearts.

Little Reminders

I ran into an acquaintance the other day. We were pregnant at the same time, actually due within a week of each other. I had an opportunity to tell her about Palmer, but she hadn't had her developmental ultrasound yet. I didn't want her to have the added stress of worrying about her baby so I said nothing at the time. She quickly asked how the birth went, how he was doing and if I had a picture of him. I started fumbling for words as soon as she asked how the birth went. We had a mutual friend who knew about his condition and promised me they would let her know so there would be no awkward moment. Well that promise clearly did not happen.  I explained as quickly as I could about anencephaly and that he had died. This lead to the question of when we found out about his condition. When I said January, she had a puzzled look on her face and asked again when I delivered. When I responded June, she bluntly asked "Why didn't you get rid of him sooner? Wouldn't they let you? Why would you want to carry a baby like that?"

I think I am getting pretty good at that blank, what-in-the-hell-did-you-just-say look. I know I didn't have the best response. Along with being stupefied, I find myself detaching emotionally during these situations. Survival mode I guess. All I could say was "Why wouldn't I carry him?". I looked at her beautiful, perfectly formed baby and looked back up at her and said, "I wanted to love my baby for as long as I could. Wouldn't you?"

This conversation was one of those little reminders as to why God chose me to be Palmer's mom.  He was not a "thing" to be thrown away. He was a child to be loved and cherished no matter how brief his life on Earth was.

the cowboy kit ~

Spencer is visiting Grandma and Grandpa this week. Last night I called to check in and see how things were going. This is a piece of our conversation:

S:  "Mommy. Can you give Grammy permission to buy me a cowboy kit? It is so awesome and I need one for Grant. Cause he will need one too when we go to their house to ride Gidgy. Please mommy! She said I could have one if you said it was fine."

J: "Yes that would be fine. But you need to be super good tomorrow."

S:  "Grammy! She said yes! But you can have it back if I am bad. But I will be good. I promise. Deal."

I could just see him sticking his thumb and finger out when he said 'deal'. It brought a smile to my face.

S:  "Mommy, can we talk in private?"

I could hear his feet pattering across the floor along with a muffled "I gotta have a minute of privacy" said to my mom.

S:  "Mommy. I miss you."

J: "You do? I thought you were having all kinds of fun though?"

I had a flash of him crying and begging mom to bring him back home. He has never wanted to come back home so soon after being at either grandparents house. He always asks to be gone for 10 days....no more, no less. I know my mom had all kinds of fun stuff planned for him and this would be their last chance to have him before my dad has surgery again. I didn't want their time to be cut short. A sick, panicky feeling started to creep in.

S:  "I am having fun! But I miss you loving me and holding me and giving me kisses and snuggling with me. And I miss talking about our day.  Don't you miss it too? So how was your day mommy? What did you do today? What did you eat for breakfast?"

J:  "Honey I do love you and of course I miss you and doing all of those things with you."

And then the phone went dead. As quickly as the silence hit, my dad picked up and quickly said the storm was really hitting and they just lost electricity. Spencer was on the cordless phone. I figured it would not be long before his 'old-fashioned' wall phone would go dead too. As quick as the thought entered my mind, the line went silent again.

Spencer loves those little things as much as I do. It didn't really hit me until yesterday how much he looks forward to them. They have been a daily ritual for as long as I can remember. But for him to recognize that I would miss them also, well, it brought tears to my eyes....happy tears that is. Moments like this is what keeps my world turning. It was a reminder of our unconditional love for each other. A love that I would not trade to avoid the heartache of loosing a child.

Birthday Pancakes

It all started with Josie. She was set to be induced with Theo on a Saturday morning. Spencer was on a pancake kick. When I opened up the drawer next to the stove, the birthday candles were peeking out at me.

Birthday pancakes were born.

I thought what a wonderful way to celebrate his life from across the ocean. Spencer already knew about Palmer's diagnosis. He often worried that there would be no one for his brother to play with in heaven. I thought this would be a good way to 'introduce' him to the other babies who would also go to heaven when God decided it was time. I explained that Theo's head didn't grow right either and that today was his birthday. I asked him if he wanted to have a little birthday party for Theo.  He excitedly agreed, the candles were lit and the birthday song commenced. We have since kept this tradition alive by celebrating the births of Christopher, Carys, Gabriel, Sophia, KayLynn and Esther ~ just to name a few.

Eleven years ago today, a beautiful baby girl was born to Monika and Christope in Switzerland. They named her Anouk. Today we remember her along with her parents and siblings. Happy Birthday Anouk!! May your family find peace today as you celebrate in heaven. I know you are looking down on your mom with pride and love. She gave you life and the rest of us hope.

Thanks Dad

January 21st, 2011  ~ the day our world came crashing down.

It started out pretty normal until right before I went to lunch. I started bleeding. At first, I was not too worried. I had problems with this off and on since the beginning of my pregnancy. Three earlier sonograms showed  it was always nothing to be worried about. The heartbeat had always been strong and steady and movement was always seen as well as felt. But this day, the bleeding progressed. I called my OB office and my doctor was out for the day as well as his nurse. My call was sent to the on-call nurse. Voice mail. I left my message with my work number to call back. An hour passed and no call. I checked my cell phone and had a missed call from the OB office with a message to call back. So much for them calling the number I left. So I called back. Voice mail again. By this time it was nearly 3pm on a Friday afternoon. My biggest fear was to be sent to ER to be seen there. So I took my sono tech up on her offer to "call anytime you need reassurance". She called me back less than 3 minutes after I left a message on her voice mail. She went directly to the other doctor on-call and he said to come over for a sono right away. I hadn't told Scott that I was having problems at this point. I called him quick, said I was going over to check for heartbeat and nothing else. The 'nothing else' was our way of teasing each other on finding out baby's sex. He wanted to know and I wanted to be surprised.

3:30 pm. "Heartbeat is great. Baby is head down and legs are crossed. I want to check the cervix and the location of the placenta. That may be the problem.'" Silence. "Oh Jenny." It was the tone in her voice that caught my attention. " Oh Jenny. I want to be as upfront with you as I can. Your baby's head did not develop properly. It appears to have a condition called anencephaly. See. Right there. The head is not round. Jenny I am so sorry." Another tech came in right after her explanation. As soon as she opened the door and looked at the screen, she rushed to my side, dropped down and held me. I was sobbing silently on the exam table looking at the obvious, flat skull. She verbally confirmed what the other tech suspected. She left the room to call my doctor, not the on-call doctor, to confirm the diagnosis. While we waited, she wanted to know if I wanted to continue with the scan to determine sex or to finish the developmental portion of the scan. I couldn't. It was already too much for me to process. This was supposed to be our "rainbow baby". Our take home baby. Our reminder that after the storm, good will come. I couldn't wrap my head or heart around what I had already heard.

We made small talk as we waited for my doctor. As it turns out, my tech worked at a University hospital where all suspected cases of anencephaly were sent for confirmation of diagnosis. She personally had scanned a large amount of babies with anencephaly. I knew there was no question of diagnosis. One, I could see it myself. Two, she wouldn't have said anything if she was not certain. Three, these two techs are the best around. It felt like an hour, but my doctor arrived within 15 minutes after they called him. I don't know what he was doing, but I do know he dropped everything immediately and came in. He confirmed the diagnosis.

How was I going to tell Scott? This was a nightmare that I just wanted to go away. I don't remember if he called me or if I called him. We both remember our locations when the news was shared. I was in my car outside of my OB office and he was in a pasture doing evening chores. We cried together for a long time over the phone. He wanted to drive in and bring me home, I wouldn't let him. He felt so bad that he was not with me. I was thankful that I was alone. If I hadn't started to bleed, we would have received the news three days later and Spencer would have been with us. So yes, I welcomed the thought of shouldering the news by myself for that reason alone.

My next concern was how were we going to tell our parents. We decided each one of us would tell our own parents.  I can't even tell you when he called his mom and dad. I panicked at the thought of calling my mom and dad. How could I call and tell them that their grandchild would die? I kept picturing them cuddling with Spencer when he was an infant. I couldn't do it. I called my sister. I remember I was in the parking lot at HyVee when I told her. My heart was shattered. She said she would call mom and dad for me and let me sort though things at my own pace. She knew they would understand my frame of mind and why I couldn't call now.

So she called our mom that night. Dad was at work that night until 11pm and couldn't be reached. Dad said that all day, he kept thinking there was something significant about the day but he couldn't place it. It was a nagging feeling. He asked several people he worked with if he was forgetting something that day or if they knew what was so important about the day. The feeling just didn't leave him. He decided to try Google to see if there was an answer there. This is the first thing that came up in his search :

         Psalm 121

The Lord My Guardian

I raise my eyes toward the mountains.

   From where will my help come?

My help comes from the Lord

   the maker of heaven and earth.

God will not allow your foot to slip;

   your guardian does not sleep.

Truly, the guardian of Israel

   never slumbers nor sleeps.

The Lord is your guardian;

   the Lord is your shade at your right hand.

By day the sun cannot harm you,

   nor the moon by night.

The Lord will guard you from all evil,

   will always guard your life.

The Lord will guard your coming and going

   both now and forever.

He didn't know the significance of this verse at the time, just knew that it eased that nagging feeling he had felt all day. When I finally found the strength to call them, my dad shared this verse with me and how he came upon Psalm 121 on January 21st.  It brought comfort then and still does. A reminder that God will protect us from harm and watch over us night and day.

Thanks Dad.

A peek hole to Heaven

Thunderstorms.

I used to not really care for them. I always associated them with the potential for destruction. Hail. Lightening. Tornadoes. Flooding. All bad things.

Palmer's birth gave me a new perspective. It stormed like crazy that day. Even though the shade was up in the delivery room that day, I really wasn't paying attention until I saw Scott pull out his phone and check the radar. When I looked up into the sky, you could see the clouds swirling above the hospital. Those clouds quickly passed and the rain began. The rain varied off and on through out the rest of the day and into the evening. Let me take you back to the most significant part of that storm for me.....

We gave Palmer over to the nurses shortly after 11pm. This was about 5 hours after he entered the world. As we sat on the hospital bed with Palmer, Scott and I talked about the significance of when the cooling process started. (Before tissue can be harvested, the body has to begin a cooling period. The cooling period ensures the tissue can be harvested. In this case it was his heart valves.) We felt that the sooner his body could start cooling, perhaps his valves would be in better shape. We fought to get him to meet criteria. Actually Scott fought pretty hard. He insisted they re-weigh him because he thought Palmer was heavier than 4lbs 13oz. (He was actually 5lbs) Our logic was that the sooner he was harvested, the sooner another family would get "the call".  We knew we would leave the hospital with empty arms. We tried to imagine the joy those parents would feel, knowing they would get to take their baby home. 

We were told that the harvest team would fly in to pick Palmer up and fly him to the harvest location. It was anticipated they would arrive around 4 am. We settled in and went to sleep. In the middle of the night, I woke up to a clap of thunder and drenched in a cold sweat. The lights flickered briefly, the clock flashed off and on at 2:47 and I heard a generator kick on. Outside the door I heard "Mary, they are here!". It was shouted with such urgency. I thought that it was probably pretty normal for people to arrive in the middle of the night. After all it was the OB floor and babies come whenever they are ready. I laid awake in bed until about 4am watching the lightening and listening to the storm rage on. I talked to Palmer during this time asking him to help the harvest crew arrive safely. I also remember feeling such a sense of peace.  Around 4 am the storm stopped and I could hear the birds sing. I remember thinking that was so odd. I have never heard birds singing before day break. Suddenly I was sleepy and ready to go back to sleep. My nurse (Mary) came to wake me up at 6am. It was shift change and she wanted to give me my morning medicine and say goodbye. She also asked which funeral home the day shift needed to call to come pick up Palmer. I was confused. It was arranged that the harvest location would call the funeral home and either they would return him or the funeral home would go there. Harvest location. Palmer never left the hospital. As it turned out, the harvest team came  "about an hour earlier than expected and finished in about an hour." I will let you ponder the timing.

This takes us back to my new appreciation for thunderstorms. I feel the closest to Palmer during a storm or a rain shower. I often find myself outside looking at the clouds on stormy days wondering if the little openings are peek holes to heaven. The anxiety I once felt over "what may happen" is usually not there. I no longer think of destruction, I think of life. Palmer's life. 

back in the saddle again...

A year or so ago, we went through a period of Spencer fibbing. I believe it was my sister who started the 'truth chair' with him. If we thought he was starting to tell a whopper, we would ask him to sit on the 'truth chair' and tell his tale. Thankfully he didn't have to make too many trips to the chair and he learned (hopefully) his lesson on fibbing. Sometimes if he doesn't like what he is told by myself, he asks me to sit on the 'truth chair'....

I guess this blog is my 'truth chair'.

Last week I started back to work doing half days. Slowly easing back in.  I thought I was ready. Well I can't lie. I can't even try to lie. I was not ready.

The anxiety was the worse. It was a weight on my chest dragging me down and hard to breathe. My heart raced. It usually resolved on my drive back home. I would lay awake at night trying to sleep. The closer it came for my alarm to go off, I could feel that weight slowly increasing and my heart speeding up.

I hated the questions or the anticipation of questions. I tried so hard during my pregnancy to tell everyone who acknowledged my belly that  Palmer would not survive. I did this to avoid answering questions when I came back from maternity leave. I did this for nearly 20 weeks. I did this to avoid the awkward questions of  'How is your baby?'. It was hard then, but it is harder now.

I am not sure if people did not believe Palmer's diagnosis or if they just didn't pay attention. Maybe they thought the doctors were wrong. Or that there would be a miracle. It is hard to hear "How is your baby? Is everything fine now with him?" or "Congratulations. How are your boys doing? Has it really been six weeks? So your new little one is six weeks now. I bet he is big." I can guarantee you there was an awkward silence followed by stammering on my end. How do you answer that? Even after re-explaining some still don't believe me. A blunt "My baby is dead" is all I can come up with at times. Terms like "passed away" bring confusion to some faces. It drained me mentally. The mental end wore me down physically.

After we discuss that indeed he did die, I usually hear the following: "Oh that is too bad. I guess it was just meant to be that way. You know, Gods will. I guess you can just have another one."  or "Well at least you have one child that is alive. By the way, your hair looks great today." Alright. Some of this may be true on a few different levels, but this is the last thing I want to hear. I want my child healthy and alive and home with me. I want the sleepless nights. I welcomed them. I don't care if my hair looks great! I would be bald if it meant he was in my arms.

And now we move on to my weight. For the record, I just finished a Snickers ice cream cone before I started this blog. I ate yogurt for breakfast,  lasagna and salad for lunch and for supper we went to Sonic where I had a New York hot dog, cheese tots and a root beer float. Yes I am eating. Yes I have lost weight. Has it been intentional. Yes. Am I self-destructing through grief? No.  If you saw me before I was pregnant, you would know that I needed to loose weight. Aside from tonight, I am eating smarter, counting my carbs and proteins; basically  following my pregnancy diabetic diet.

I also had issues with Spencer starting a new daycare. This had nothing to do with the care he was getting. I was so afraid of change. I do not like and do not deal well with change. It was out of my comfort zone. Have I mentioned that I hate change?  But he fit right in and loves his new provider. He even cried one night because he didn't want to go home and there was never  clinging "Don't go mommy!" moments in the mornings.

Life threw too much at me to handle at one time. I can recognize that. I can accept that. Thankfully I have an understanding boss. I am feeling a lot better with some things. Others will be a work in progress. For as much as I would like to sit at home, I can't. For now, just half days for a while. No one ever said things will be 'normal' in six weeks. I need to try to find a balance. Onward and upward...

Memories

Today I cried for thirty glorious minutes.

That is the amount of time it took me to look at all 169 photos we received from our Now I Lay Me Down To Sleep photographer.  I never thought I would be able to have a complete stranger in the room with me at such a vulnerable time and in such a vulnerable position. I will never forget the moment she walked into our hospital room. It was a moment of confusion. She was not the person we were even expecting. Literally.  I knew she was meant for us as I watched her walk to the spot where she took her very first picture. The dry erase board.

Video was not needed. She used her camera to tell our story....to capture the day to perfection. We made beautiful memories that day and Karen captured them.

Mercy through Spencer

It was hot today. Two years ago I bought a small 5 foot collapsible pool on clearance. It stayed in the basement in its package until today. Last summer I was not in the right frame of mind to put it up. Sad, but true. Today it made its way outside. Spencer and I filled it up to the perfect temperature. (I knew the hot and cold faucets outside would eventually pay off!) He played in the pool and I sat in a lawn chair soaking my feet. Today was one of those "bad days". It seemed like nothing was right for me in so many areas of my life. The finishing touch was being told that Spencer has a heart murmur and would need testing to make sure there was nothing seriously wrong. Medically a murmur can be a pretty normal, functional diagnosis. Logically I know the odds are in his favor and it will probably be fine and no treatment will be needed. Despite knowing this, all I could think were how the "odds" have not been in our favor lately. As he played, I listened to a song by Selah, 'I Will Carry You'. I thought of Palmer and the tears streamed down my face behind my sunglasses. I kept thinking that I didn't want anything else wrong in my life....especially when it came to my children.

After about an hour or so, I noticed the sun disappeared. The sky was really dark to the north and I told him we needed to go inside because it would probably storm. Spencer looked at me funny and said "We can stay outside. Mercy is in heaven with God. She comes down to us when it rains". What? As his vocabulary increases, he sometimes slurs his words and enunciation is an issue. I asked him to repeat what he had said.  "Mom. Mercy is in heaven with God. You know! Mercy! She comes down to us when it rains. Don't you listen to Father Pat?" I got "the look" from Spencer. The same look that I know I give him when he should be paying attention. "Mom. He said it again when we were in church with baby. He says it all the time. We need mercy to come to us,"

The storm hit shortly after this conversation. His words kept repeating in my head as we went to the basement to wait out the storm. So like any good Catholic, I fired up Google after Spencer went to bed.  It seems for me, when I go to church the responses can be automatic. There is thought and reflection behind it to a point, but not always on the level it should. The word mercy is found throughout the Catholic mass. I needed to find the spot he was referring to and linking to the rain. So I found a site for the Catholic mass and started reading, going from link to link. 

May almighty God have mercy on us, forgive us our sins, and bring us to everlasting life.

Lord have Mercy.

Christ have Mercy.

So now I found the point in church where I think he pays attention to. "Bring us." If God lives in heaven, the only way he can 'bring' us anything is to send it down. The only thing he knows that can tangibly be brought down is rain. So mercy that is brought to us must be rain. I could be wrong. My brain is tired. But knowing my son and his logic, this is the connection that makes the most sense.  I also thought I would throw in another search for mercy. This was for myself. His choice of words must have some relevance to my day. I needed easy snippets of information that I didn't have to break down or sort through fluffy words. 

"Mercy is for everyone"

"Mercy relieves suffering, and there are different kinds of suffering." 

"Mercy is not always convenient.... suffering and crisis are often unpredictable."

I am not sure if my interpretation of what Spencer said is correct. Regardless, my son reminded me of what He is willing to provide. 

Good Grief

Good Grief.

How many times have you used that phrase? Was it said out of frustration? I am guilty of using it. Usually it is said under my breath when Spencer pulls a good one. Should I use this phrase? Probably not. When I do say it, I am typically at my whits end. Tired, grumpy, annoyed, short on patience. I could keep throwing adjectives out there but I think you have either caught my drift or have been in my shoes.

Grief Good.

That looks funny doesn't it. How can grief be good?

This weekend came with a bit of reflecting...reflecting on my own grief process with the loss of Palmer. Spencer and I made the trip out to western Kansas to see Scott. A total of 10 hours or so in the car. That is a lot of time to think and ponder life. Lately I have been wondering and worrying  if I am handling my grief the right way. Some days I cry. Some days I do not. I feel like I have more good days with a sprinkling of bad moments. On my good days I feel a sense of peace. Peace that surrounds me and holds me tight.  But is my peace really an illusion? Have I tricked myself into believing that I am "fine"? Have I really started to pick the pieces back up after the death of my son?  Will this sense of peace crumble down on me one day and leave me vulnerable and further broken?  All these questions bring doubt. Doubt will be the cause for me to reflect and work through the answers to my questions.

I held a baby this weekend. Well a one-year-old to be exact. I didn't know if I could do it. Doubt crept up and settled in next to me as I sat on the couch. It was the first child I held since Palmer.  He was such a rambunctious little guy, tired and in need of a nap. His parents said, "This is strange. He just doesn't warm up to strangers." Actually I kept hearing this phrase the entire hour he sat on my lap playing. He was so peaceful and calm. At one point I thought maybe it was Palmer's doing. I could picture him whispering into the little guys ear. "Hey! That is my mom. I know she will hold you just like she did me! Just stick your arms up and she will pick you up. Yeah! That's it! I told you so!"  It felt good to take that step and to mentally work through the physical act of holding and playing with a child again. I showed Doubt that I could do it.

Some days will be easy, others will be hard. The pieces of my life will be found and  picked back up again. Love, understanding and acceptance of my grief will help hold those pieces back into place.

Grief Good.