Sunday, August 28, 2011

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,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. 

Saturday, August 20, 2011

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.

Friday, August 12, 2011


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.

Monday, August 1, 2011

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.