Love Isn't Selfish

I never imagined this thing called the 'internet' would open my world  to some pretty amazing and remarkable parents! When I started this journey nearly two years ago, I clung to what I could remember of my faith... hoping and praying to make it from one day to the next, never knowing what the next moment would bring... or not bring. I clung to the fact that my faith always circled back to love. I knew the basics, but never could produce a bible passage to cultivate what I knew.

So with that said, lets go back to the pretty amazing parent comment.  One mom in particular I developed a special bond with. We navigated our paths together and more than once, her words on faith and love helped me back up when I stumbled. She could always provide that tangible verse to reaffirm and strengthen my faith when I needed it the most. We were two moms walking similar paths from different denominations, yet brought together by love on so many levels.

I am so happy (and proud) to announce that her book, Love Isn't Selfish, can now be found in paperback and for Kindle. Follow this link to learn more about her book and for ordering details. This would make a great stocking stuffer for a few Kindles out there :)

July 5th 2012

Groggy from the time change and confused with waking up in a different house, I awoke (for the second time that morning) to Spencer resting his head on my belly. The patter of rain did not deter the excitement of vacation talk. I listened intently as he chattered away about the adventures the day held.

Our conversation on dinosaur bones took an unexpected turn.

"Mommy. I bet you have a baby in your belly right now. Maybe it is a boy. Or maybe it is a girl. Or MAYBE there are two!"

There was no way he could have known, that one hour before he woke up,  my first test was positive.

This is the day the Lord has made

As I sit here tonight all I feel is peace. The same indescribable peace that surrounded us a year ago. If you haven't experienced it yourself, all I can say is it is something you will never forget... and you will welcome it with loving arms if it finds you again. No gloom. No anxiety. No worry. Just pure peace. To quote Kelly, 'My cup runneth over.".

One year ago we said hello and goodbye in a short span of time...

I thought I would give you a glimpse of what our day was like just shy of a year ago.  Karen Bonar, a local photographer from Now I Lay Me Down To Sleep, graciously donated her talent and time in order for us to have tangible memories of that day.  Some thought they knew how the story would end. Little did they know it was just the beginning.

A day of joy...a joy that outshone the sorrow....

Psalm 118: 
23 the LORD has done this, and it is marvelous in our eyes.24 This is the day the LORD has made; let us rejoice and be glad in it.

Keep on dreaming

Keep on dreaming even if it breaks your heart.

Eleven months and twenty three days wondering how others see me. Wondering if they see the exhaustion in my face or hear it in my voice. Wondering if I imagined that eye roll at my mention of his name. Wondering if one half thinks I have lost it and the other half is quietly taking bets. Wondering when will I let go of a memory and move on to the future.

Keep on dreaming even if it breaks your heart.

Eleven months and twenty three days of listening to a clock tick. Witnessing my body betray what a woman was designed to do. Feeling the emptiness in my arms, yet feeling the heaviness of the sand at the bottom of my hourglass. Feeling the storm rage on while watching everyone else catch their rainbow.

Keep on dreaming even if it breaks your heart.

Eleven months and twenty three days of a deeper love for my husband. Walking beside a man who is content to grow with me and love me unconditionally. Learning to accept that love and return it in the same condition it was given. Remembering the look on his face right after Palmer was delivered. Knowing that look was so full of pride, joy and utter love over the life we created together and brought into this world. Basking in that memory.

Keep on dreaming even if it breaks your heart.

Eleven months and twenty three days of watching my son grow. Rescuing him from the tree branch he is stuck in. Smiling as I sop up water from the bathroom floor. Kissing his skinned knee and telling him everything will be ok. Explaining about Heaven and listening to his 'plan' for when God decides his mommy can have a new baby to bring home. Thankful that I was able to bring one baby home.

Keep on dreaming even if it breaks your heart.

Eleven months and twenty four days. Today, I find myself still standing. Living each day as it was intended for me. Knowing that yesterday was yesterday, and despite heartache, happiness can still be found with each new day.  Realizing that love keeps you dreaming even if it breaks your heart.

a jagged little pill

Mom! Mom! Mom! I have exciting news for you! Today when I was learning my consonants C and K in phonics class, God whispered into my ear! He said you had a teeny tiny baby growing in your tummy! Isn't that awesome!!

Well this wasn't a moment where I could  pat him on the head and explain how mommy's ovaries do not work. It was a moment where I was thankful he was in the backseat and couldn't see the tears fall. It was a moment where I swallowed the lump in my throat, kicked in the happy voice and told him how awesome it was that God whispered into his ear. Thankfully he has a short attention span. He spent the next few minutes trying to imitate how God sounded when he whispered.

I can tell you that after you experience the death of a child, a feeling of failure can creep in. Yeah, yeah. I know. I can hear the comments on that one. But you do. A woman's body was designed to reproduce and bear children. When you can't do that successfully, you feel like a failure as a woman, a wife and a mother. Your duty as a mom is to love and protect your children with every last fiber of your being. There are people in my life who have abandoned their children for the sake of convenience. There are people in my life who view their children as merely a pawn in the game of life. It is these same people who have working ovaries and are blessed with subsequent pregnancies. Another hard pill  to swallow, adding to the feelings of ever present failure. I know there was nothing I intentionally did to cause Palmer's birth defect. I showed him all the love a mother could in his short time here on Earth. Sometimes as a mom that just isn't enough to trump the negative feelings. And I think I have every right to allow myself to feel this way from time to time. There are only so many consecutive hours you can force yourself to be strong for everyone around you.

I don't want to sound like the bitter, resentful mom who couldn't have what she wanted or thought she deserved. I do see the blessings in my life and strive to look for more even on the worst of days. Spencer is one of those blessings. A vibrant, witty and intelligent child who constantly keeps me on my toes. His requests for a baby come from an innocent, loving place. It is a reminder of the unconditional love we should all have inside of our hearts. That love should never chastised or squelched by anyone irregardless of how they feel about the 'fairness' in life. It is often the reality check that snaps me back to where I need to be.

Nostalgia

Nos·tal·gia : 

1: the state of being homesick

2: a wistful or excessively sentimental yearning for return to or of some past period or irrecoverable condition      

National Down Syndrome Day

                                                ~ Beauty is in the Eyes of the Beholder ~

He was in love with Palmer before he was born. Each time I talked to  Uncle Gary on the phone, and without fail, he would ask if Palmer was still in my tummy or in Heaven with his mommy. This question was always followed by a request to hold Palmer. This look on his face I will never forget... it was a moment of peace and clarity in a chaotic setting. So proud and so in love with a baby he accepted unconditionally. Happy National Down Syndrome Day. I couldn't imagine life without the blessing of Uncle Gary.

Unless

This posting is about a special project I have started in my son's memory...a project that started with a 'seed'...

Last year around this time, a box arrived at work. Inside was a hand-knit blanket with a beautiful note. The note simply explained that a special baby needed a special blanket. I was completely humbled and touched by the thought and love that was put into each stitch by a complete stranger.

A few weeks later, my Uncle Larry contacted me. He wanted to let me know that he had started a blanket for Palmer. He said he has made them for his other great-nieces and nephews and felt Palmer needed the same. My Uncle Larry was on the heart transplant list and he would cross-stitch to pass the time as he patiently waited for 'the call'. I can use the word 'was' because he is now off the list. He received his new heart this past November. This blanket represented the circle of life - giving and receiving - death and life anew.

These were just two of many thoughtful mementos I received from family, friends and complete strangers. These mementos are so much more than a tangible possession... they all enhanced our memories of Palmer. And so the 'seed'  of  Project Palmer began to grow.

Around Christmas I NEEDED something to keep my mind and hands busy. So with the help of You Tube and a borrowed crochet hook, Project Palmer was conceptualized.

Knowing that any day could be Palmer's last, we were able to think ahead and prepare. Unfortunately many families do not have this opportunity. What is supposed to be a joyous day turns into their worst nightmare. Their empty arms hold only memories.  My goal for Project Palmer is to enhance these memories by providing memory boxes to the local area hospitals. These boxes will include at least a hand stitched blanket and hand mold kit. I would also like to provide an option for a cocoon/hat combo to be used as a photo prop. The photo prop idea was something that I thought about doing for Palmer but decided against....it is a decision that I regret. I want the love and thoughtfulness we felt from others to translate through each stitch created.

I have been blessed with wonderful family and friends and honestly couldn't have done this completely on my own.  My cousin Linda has graciously volunteered her time and talents for Project Palmer....wielding her knitting needles and also as an administrator for the Facebook page.  So please stop on over, 'like' the page and check things out... including photos of current projects and shipping/delivery updates.

I will leave you with the words of Dr. Seuss. Words that can be applied to so many things in life...

"Unless someone like you cares a whole awful lot, nothing is going to get better. It's not."
                                                                          ~ Dr. Seuss, The Lorax

A Day of Love

February 14th is commonly known as Valentine's Day.

Not many people know it is also National Donor Day.

We asked by our Transplant Network to participate in two projects to put a face to organ and tissue donation.  It was an honor to share our story along with the other families in this project. My intentions were to get this post out on it's intended day of celebration, but my five uncompleted drafted versions were just not right. It wasn't until this evening that it dawned on me: this video completely speaks for itself. 

Are you a registered donor?

Disappear

About a year and a half ago, I noticed my wedding photo was missing from my bedroom. I couldn't figure out where it went. A few days later, I noticed Spencer had it in his room on top of his bookcase. When I asked him why he took it, he simply said he loved us and wanted our picture in his room so that he could look at it whenever he wanted. So this summer it didn't surprise me when he asked for  two things: a photo of his brother to sit next to ours in his room and another photo to keep in the car by his car-seat. 

Today, I heard a little voice in the back seat ask me if he could roll up the picture of his brother and hide it. Through silent tears, I asked him why he wanted to do this. His response: "Mom I don't want anyone to know I had a brother. I don't want them to know his head didn't grow right. What if they find out and tease me?"

I can't tell you how much my heart hurt to hear these words.

 

I thought back to this photo. A four year old  little boy who was so excited and proud to finally hold his little brother. Two parents who tried to shield their son from the defect beneath a hat...only to have the hat fall off...and then to hear that little boy exclaim how beautiful his brother was after seeing him as God created.

Today my heart hurt over the fact that a five year old has to worry about being judged by his peers. Kids can and will be cruel. He has already had a taste of this cruelness over insignificant objects... insignificant to an adult but very meaningful to a child. I could only imagine the hurt he would feel if something was said about his brother. Until today, I never really thought through how Spencer's view of the world would change after experiencing death.

As much as we want to, we can't shelter and protect our children from the hurt and pain of life. However, we can teach them as much as possible before sending them out into the real world. Some of the best teaching measures are set by example.....Showing them unconditional love and cultivating that love to grow and flourish is one of the best examples around. It is my job as a mom to make sure the little boy in the picture does not disappear.

A Decision

Growing up in a small little town in South Dakota the word 'abortion' was never really talked about. The movie Dirty Dancing was my first exposure to the concept of abortion. It left a lasting impression of what an illegal abortion could be... a doctor in a back alley with a wire coat hanger.... frankly it scared the hell out of me.  So I always sat perched upon the fence keeping my opinions and thoughts to myself. Abortion was something I didn't think I would personally do, but what right was it of mine to condemn a woman for making that choice. I wasn't walking in their shoes. It was a legal procedure in many states and with strict regulations, I thought at least it left a safer option for those who made that choice. 

January 22 is the anniversary of Roe vs. Wade.

I will never pretend to be the strong mom who knew without a shadow of doubt that she would carry her pregnancy to term. On January 22,  I said no to my pregnancy. I consented to ending my pregnancy by induction. I laid in bed the night before, crying instead of sleeping. I was given my options: induce right away or let nature take its course. I was never pushed to make a decision one way or another. I was scared, confused, angry and selfish. Yes selfish. I couldn't bear feeling my child kick and wiggle around. It was a constant reminder of what I wouldn't have and there was no way I could face this reminder each and every day.  Scott never pushed me into the decision, but he made it clear that it broke his heart to watch this pregnancy tear me apart. 

Early that morning I called my OB. With a heavy heart, I sobbed as I told him that I wanted to be induced. My body was already showing signs of miscarriage and I didn't want the inevitable to drag out. Deep down I was not at peace with this decision but I couldn't see the light at the end of the tunnel. He quietly said he understood my decision and that he hated to watch me go through this. This was his first pregnancy with an anencephaly diagnosis. He explained that the induction would be the same as when I had Spencer, and I would have to deliver vaginally and a c-section would not be an option. He needed to call the hospital and see what hospital policy and procedure was and if they had a spot open for an induction.

My phone rang about a half hour later. The hospital viewed an induction prior to 24 weeks as an abortion. This totally confused me. An abortion was about ending an unwanted pregnancy. An abortion was done in a clinic with tools and had people picketing outside...not in a hospital. They felt that at 24 weeks, any child born could be put on life support until it could survive on its own. I was at 20 weeks. My child could not survive and technically I would be ending its life by choice. Because this was uncharted territory for my doctor, he consulted another physician in his group. She reminded him that he needed to look past what  he thought was 'emotionally fair' for me and to think about what was a medically sound decision. It was a gentle reminder to him that the uterus does not respond well to induction medication until the third trimester. Also, if the baby had other deformities (which we did not know because I chose to end the sono early) the placenta may not detach properly. Both of these could cause hemorrhage, rupture or irreparable scarring that would leave me unable to have more children.

As he explained this, several things ran though my mind. I didn't even think that the Catholic Church viewed early termination as abortion. And then what if something did happen to me? I couldn't leave behind a husband and son because of my own selfish wants. I was also replaying a conversation I had with my friend Michelle. "Jenny I will support your decision either way, but if you carry it out, you will get to hold and love this baby. You will get to say hello and goodbye no matter how brief they may be." I thought of our miscarriage a year ago. There was no closure then and my heart still ached over that loss. My child deserved a fighting chance.

I can't really explain what happened next. (My Aunt Margaret likes to say it was divine intervention.) It was like a switch was flipped somewhere deep inside of me. The tears stopped as I told my doctor that I couldn't put myself in that situation. I would carry out this pregnancy for as long as my body allowed. I didn't know how I would get through it, but I could accept it and would manage one way or another. Before we hung up, I remember saying there was a bigger picture that I just couldn't yet see.

On the anniversary of Roe vs. Wade, I was asked to make a decision to God. A decision on a commitment that started five months earlier with two pink lines. A commitment of unconditional love and acceptance of His will.

D-Day: 1.21.11

He answered at the end of the third ring with an out-of-breath hello. Calving season.

Hey there. Just wanted to call you quick. I am sitting outside of Priddle's office and the girls are going to work me in for a sono. Long story short, I started spotting at lunch, couldn't get the on-call nurse to call me back so I called the tech, who talked to another nurse who got her doc to authorize a sono before the weekend.  Yes this is different from a few months ago. More blood.  But I felt movement before it happened so I am sure everything will be fine. Well the last appointment is at 4:00 and it is 3:30 right now, so no, I guess you won't have time to drive the hour and a half  to be here. I am sure they will just do a quick check for heartbeat and nothing more. I promise I won't sneak a look for boy or girl parts *giggle* and I will check to see if we can still keep our regular sono on Monday so we can find out together. That one is right away in the morning so we can bring Spencer and you can drop him off at daycare on the way back home. I know he is so excited to see his brother or sister. Are you sure? But I know how much you wanted to be there when we found out. Alright we will play it by ear. I will call you as soon as I know something.

Well little kiddo is active. Let me turn this on so you can listen. See, nice strong heartbeat. You had that bleed back around week 8 didn't you? I am not seeing anything abnormal, especially in the area where it was before. Kiddo is head down so lets see if the placenta is over the cervix. That may be what caused the bleeding. Hmmm. Not cooperating are you. Alright little stinker! I can't see if you keep kicking at me. Hold still. There you go. Oh Jenny. I have to be honest with what I am seeing. I can't keep this from you. Kiddo's skull is not round. See right here. There is a flat appearance at the top. Your baby has anencephaly. I am 100% certain but I will get Jen in here to confirm with me. We will call Priddle. It is his day off but I am sure he is in town somewhere. Don't worry. We will get a hold of him to come in, look at the sono and talk to you. Oh Jenny. I am so sorry.

The following ten minutes were the longest of my life. I sat there in shock. Numb. Unable to move. Too confused to really cry. My mind was buzzing. Medical terminology class was filed way back in my memory banks. Anen = missing or without. Cephalic = head end of the body. Without his head? How could that be. I could feel him kick and squirm even then. The dreams came flooding back. Hydrocephaly. The recurring dream of a child born with hydrocephaly. That wasn't right. Hydrocephaly had to do with fluid on the brain. Maybe I totally misunderstood what she said. Was it hydrocephaly or anencephaly. My head hurt. I am sure the confused look on my face gave me away. The tech explained that her previous job was at the University of Iowa. It was there that she personally had scanned around 20 babies who were diagnosed with anencephaly. If the doctor suspected it in his office, they were sent to her to do a higher level scan. I didn't doubt her. I never questioned if she made a mistake. Small talk followed. She told me I would be given the options to end the pregnancy or carry it out to term with the 'popular' option being termination. Quietly she offered up the option of organ donation, explaining that if she were in my shoes, she would carry it out and donate organs. I was asked again if I wanted to find out if my child was a boy or a girl. I couldn't. I thought about Scott. He wanted to know so bad. I couldn't take that experience away from him. I thought of Spencer. I could handle getting this news by myself if it meant he was not here to see me like this. He knew mommy had a baby in her belly. How were we going to explain death to a four year old? Our moms. They just had birthdays. How could we tell them that their grandchild was going to die? I was supposed to get good news today. This baby was supposed to breathe new life into a month associated with loss and pain of our previous miscarriage.

The door quietly opened as my doctor walked in. The buzzing in my head stopped. Jenny. I am so sorry. I looked at the film. The diagnosis is correct. Your baby has anencephaly.

A New Me

I finished going through the rest of your things tonight. Your feet and hand prints are bigger than I remembered...but still tiny when I saw the picture of Emily holding your feet in her hands...feet complete with ten little hammer toes. Your hospital bracelet intertwined with mine. The application for your birth certificate. I didn't remember seeing the book the hospital sent home either. That started the tears. It was a baby book intended for a child that died. How did I miss that. I also packaged up your hospital blanket and hat. Remembering the look on the nurse's face made me smile and brought fresh tears again. She really thought I lost my mind when I asked for them. She thought they should have been thrown away because they were stained with your blood. I didn't care though. I wanted them back. It was one more reminder that you were real.

I didn't put your things away because someone told me it was time. When we came home from the hospital that day, your brother met us at the door. When he realized you weren't with us, he started screaming.  We dropped everything in our bedroom and laid with him on the bed, trying to comfort him as he sobbed and screamed. Nothing was moved until today.

Nearly a year ago, laying on that sono table, I became a different person. Some days I don't recognize myself. I don't like the jaded person I have become and knowing the days of innocence are long gone. Some days are a struggle to get through. I still have problems remembering little things. If you see me with a gallon of milk in my hand wandering around the kitchen it is because I can't remember where to put it. Thankfully I have fewer of these days, but I am quicker at recognizing why and when it happens. Putting the negative aside, I can find some good qualities in the new me. I have experienced life from a whole new perspective and have also met some wonderful people who bring out the best in me. I don't think I could have experienced this type of sorrow and joy and not become a different person.

I did it for me.  Learning to love the good, accept the bad, recognizing my weakness and utilizing my strengths. Embracing the path that He chose for me. This new me is because of you. Tangible things are just that. I have realized the best part of you will always be with me...nothing found in a memory box...but inside my heart where you will always be.