Thursday, March 27, 2008

Need a laugh today?

I needed to laugh today.....hope this makes you laugh too. J even laughed and he is the one who is sick right now!

Tuesday, March 25, 2008

The finish line....

We made it through the weekend.....there were some tears, some laughs, a bit of relaxing and a lot of remembering. I was so surprised at the details both J and I remembered about March 22nd. It amazes me how quickly the memories can come up and surprise you when you least expect it. Kind of like a melting icee...all the thick syrup at the bottom and it only takes a little jolt to get it all mixed together again. I feel like everything is all mixed together again after the weekend. Sometimes I have all the emotions in little compartments and just when I think I have everything where it needs to be...I get bumped into and it is all mixed up again. Then the crying starts again, the fear and the profound feelings of emptiness. I am not sure any of these feelings are ever gone...just always sitting right below the surface. I do not think there is really ever an on these feelings. There is not a finish line waiting for me when the journey of grief is over. I am moving forward...but the only finish line on this journey will be the one when I get to heaven...and hopefully hear, "Well done!" I want to hear that at the finish line as I look into the eyes of Jesus and then peak behind His robe and look into the eyes of my sweet Pearl...then the journey of grief will be over! Death will no longer sting and there will be no more tears. I want the vision of that moment to burn in my keep me ruined for the ordinary!

As I took time to remember on Saturday I began thinking about all the things I will never do with Pearl. I will not get to snuggle in bed with her, I will not take her for a walk, I will not wipe her nose, I will not kiss her sweet cheeks, I will not swing with her, I will not fight over hairbow or no hairbow, I will not teach her to read....the list could go on forever. I do know one thing that I will ALWAYS be able to do WITH her...worship! She is in the actual presence of God spending her time worshipping....all the time!! When I chose to sing and worship I am doing the exact thing Pearl is doing at that very moment. When I can press in and chose to worship I am doing something with my sweet baby! So...if the music is extra loud around here these will know what I am doing!

Thursday, March 20, 2008

Oh my head

I am sitting here wondering why my head still hurts so bad! I have taken 8 Advil today and still have a pounding headache. Am I making this up? Is it possible to have my head hurt from just thinking too much? I'm sure it is possible....I have been holding my breath as then end of the month approaches....almost wishing to just skip to April. I know the 22nd will be just another day full of chatter, laughing, dishes, laundry, kisses and maybe even a nap for me. I also know it will not be just another day...I will remember how this day changed our lives as well as the lives of those around us. A lifetime has come and gone in 2 short's no wonder I have a headache!

I also know that if I skipped to April I would be missing the reason that we do have hope. Jesus died for ME, for us....he took all the suffering, sin and pain so we can have a life with Him forever. The hugeness (is that even a word?) of the gift overwhelms me...I am so thankful for the gift He gave. I think of His precious mother, Mary, she watched her son suffer and how she was helpless as she stood there and just watched. Did she have any idea when she told the angel Gabriel that she agreed to this too....this heartache and suffering? I think she must have known deep in her heart that it would be this way. He was the Messiah....she knew what that meant. Yet she willingly entered into the pain and God was there on the other side of the pain to meet her. Pressing into the pain....right? I want to press into that....knowing He is there. There is purpose in the pain.

Then we have the hope that comes on Sunday...the hope that I will see my baby again someday. The hope we have that this is not all there much more awaits us. I long for those around me to take hold of the hope that is there. There is hope in the midst of the pain....I know it.

Friday, March 14, 2008

A reminder....

Oh..I love this picture! I have been working so hard today on String of Pearls....thinking about so many things that changed in our lives just 2 years ago. I want to post part of a talk I gave this past July. This will be a good introduction for people who are just learning of our story.

When our journey here on earth with Pearl was over my Dr, who is also a personal friend said to us, “Now I see why you did this the way you did.” A precious friend, who is also a Labor and Delivery nurse and couldn’t understand at the beginning why we continued with the pregnancy, said to me, “I understand why you did this and now I see why you love her so much. I would never tell anyone to terminate after a fatal diagnosis again.”
Let me start at the beginning of our journey…..

On the morning of March 22, 2006 our lives were changed forever. At our routine 20 week ultrasound we are informed that our precious baby girl, Pearl, has Alobar Holoprocencephaly with severe facial anomalies. We are so devastated by the news. We have 3 beautiful children and are so excited to be having our 4th. We do not know how are going to navigate our way through these uncharted waters.

Just few minutes later, as I lay on the table in the Perinatologist’s office, he tells us her condition is fatal and he coldly asks us, “So, what are you going to do?” I ask him if he means that we should terminate and he says, yes. I feel like he is presenting termination as the only option for us and there is nothing else presented to us. I proceed to tell him that we have been given this life and we will cherish each moment we have with her and we will not terminate. He informs me of the risks and steps out of the room for a few minuets to let us “think about our decision”.

There is no more decision to be made, we are going to honor Pearl’s life by carrying her for as long as my body will allow and let God be in control of a seemingly out of control situation. The Perinatologist then wants to make sure we know that time is not going to change the diagnosis and that there is nothing to do to make this better. I remind him that I am a labor and delivery nurse and that we are fully aware of the outcome, as hard as all that is going to be to face. Leaving that office I begin to see how people can so easily get caught up in the vortex of emotions and choose to get out of a hopeless situation and terminate.

There is no hope offered for our hearts and no encouragement to continue on the path we have chosen to take. I realize that obstetrically there is nothing they can do for this baby, but there is so much they could do for our broken hearts. At this moment, we feel so alone as nothing is offered for our broken hearts except a pat on the shoulder.

I pour over all I can find on the Internet and at the beginning none of it is good. There are some great sites for grieving parents who have lost children, but I find no place for parents who are carrying a baby to term in spite of a fatal diagnosis. We find one good book, on the waiting process, but we are hungry for so much more. At the beginning I throw myself into making plans for the end, a care plan for Pearl when she is born and how to hand her into the arms of Jesus.

I think society pressures you into making arrangements for what is to come, because that is what we know how to do, that we forget that we still have so much living to do with Pearl. Carrying a baby with a fatal diagnosis is not a common occurrence, so there is not much support there to help you live with the baby, instead of making plans for how to die. I choose to wear Pearl proudly and she is such a part of our family. Yes, we are profoundly sad. As we teach our 6 year-old son how to ride a bike we cry not only because our heart is now riding around on a two-wheeler, but also because know we will never have the chance to teach Pearl how to ride a bike. So many things we are missing out on with her. We miss her so much, even though she is still with us in my womb, growing and moving. Our 3 children are incredible, so sensitive to when we need a hug and when we just need some downtime. We are not enjoying each day, like you would enjoy a glass of wine, but we are treasuring each moment we have with our precious Pearl.

We go to the Doctor every two weeks and are so thankful for each peek we are able to take into her world. To be offered an ultrasound is a gift for our aching hearts to get to see her one more time. We are not wishing the days away, the day of her birth will come soon enough and that brings a whole new dimension to our lives. We try to keep an eternal perspective on our current situation.

Seeing friends is hard because people appear to be so uncomfortable around us. People do not know what to say to someone who is carrying a baby that is going to die. Death is such a taboo subject, it makes people think about their own mortality.

I want to scream to my friends, “Just ask me how I am doing, and stop making excuses about why you haven’t called me. Don’t be afraid to cry with me. My precious Pearl is not dead right now, she is very much alive and don’t treat me like I am walking around with a corpse in my womb. Celebrate her life with us, honor her, smile at my ever-expanding waistline, and don’t run away from me. Don’t ignore what is going on with us, but don’t give me your spiritual platitudes. Just say you are thinking of me and ask what you can do for us.” We just need emotional support for our hearts and minds.

Our whole family is shaped into something different because of this journey; our hearts’ cry is that this “new” family will be more refined than ever before and more precious than ever. Our children are amazing through this process.

Our oldest son, 6 years old, says some profound things. As I sit with him one day and talk about Pearl he wants to know what she was going to look like. I think about it for a moment and realize that only the truth will suffice for this curious mind. I tell him all about her facial malformations and that even mommy and daddy are afraid of what is going to happen. I ask him how he feels about the problem with her eyes and nose. He looks at me with those beautiful green eyes and says, “It’s ok mom, I’m not afraid. She is my baby sister and I love her. I want to see her.” I hold him as I weep. We should all have that same kind of unconditional love for those around us that appear to be so different.

Then a few weeks later he tells me that he wishes that there were two of him, he says, “I wish there could be one of me in heaven so I could be with my baby sister and one of me here so I could be with my family.” How is he able to articulate so well exactly what I am thinking?

Our four-year-old son is so precious too. He is constantly rubbing my belly talking to “Baby Pearl”. He just wants to know when she is moving and wants to make sure she knows he loves her….and then comes the shower of kisses for my belly. Our two-year-old daughter is such a light to us too.

When I am crying, which seems to be a lot lately, she looks at me and says, “You want daddy? You want lovie?” The two things that she knows always make her feel better! Even when I am crying and talking to my mom she says to me, “Stop talkin’ to mimo!” She just wants me to feel better. What precious children we have that are so in tune to all that is going on in our house. Could there be any greater gift?

We know the time with Pearl in our arms is going to be short so we do everything we can to prepare for her birth. I create a very detailed birth plan so there can be no questions as to what we want during my labor and delivery. I think for a long time about the different keepsakes I want to have at home with me. Our bag for the hospital begins to look like an aisle in Hobby Lobby! I know how precious each item will be. Each of my children have a Christmas ornament with their handprint on it and Pearl will be no different. We have plaster for hand molds, clay for hand and foot-prints, scissors for a lock of hair, cameras, and my favorite oil I use after each of my children’s first bath. There is an organization called Now I Lay Me Down To Sleep that donates their time and services for bereavement photography. The pictures we have are priceless treasures. There is not a detail overlooked.

As I approach 32 weeks the amniotic fluid begins to increase rapidly and my Dr begins to become concerned for my health. We have one therapeutic amnio to release the excessive amount of fluid in my uterus, and just 5 days later all the fluid is back and more. It is time to listen to my body and prepare to meet Pearl.

On June 5th, after a long and emotional labor, Pearl Jean Huene is born at 7:12am. She weighs 4lbs 1 oz and is 17 ½ inches long. Our time with her is unforgettable. We are able to lovingly launch her into the arms of Jesus. Not an easy thing to do, but a decision without regrets.

We have a beautiful memorial service for Pearl and are surrounded by so many who love us. The outpouring of love and support from our community is incredible. We give those around us the opportunity to be a part of her life as well as her death.

We know we need professionals around us to navigate our way through the post partum period as well as the intense period of grieving that follow Pearl’s death. I wish there was one place to go that would cover all that we thought we needed and the things that we don’t even know we need.

There are no words adequate enough to describe what a rock my husband is for me. From the moment we found out in that dim, warm ultrasound room, he has just held me close and promised me that he would walk with me each step of the way. Not even for a second did he waver in the decision to take hold of all the time we have been given with Pearl, even though he knew how painful it would be to walk this path.

He continued to get up each day, love me and love our children of so well. He assured me he is not afraid of all that is to come because he knew we are not on this road alone, God walks with us. That is where his strength comes from and I am drawing from that when I am feeling weak.

I loved the way he talked to his “princess” and so lovingly caressed my growing belly. He assures me I am beautiful even when I am feeling anything but that.

Without this brave man at my side I would not be able to walk this journey. He loves me so well and I can only hope I am loving him well too.

We are so thankful for the gift of time with our precious Pearl and look back on this with no regrets. Hopefully someday we will be able to help someone else as they walk the painful journey of saying goodbye to their child….much too soon. In the past year our lives have been filled with such a wide range of emotions. Grief is a process that never really comes to a close….the pages continue to turn in the book of our lives.
We have recently turned to a new page in the life of our family. Lucy Jean Huene was born on June 28th, 2007 and is the picture of hope and God’s redemptive plan for our lives. The sweet baby puffs of air that blow into my face in the wee hours of the morning serve as a gentle reminder of how precious and sacred life is. There is no greater honor than being a part of God’s art studio as he crafts his masterpiece. Whether it is a piece of art to be displayed here on earth or in heaven….it is still sacred.

Tuesday, March 11, 2008

Our story!

Here is our story....this is the beginning of String of Pearls

I am so amazed at how God has used my sweet Pearl!

Go down to the bottom of posts to pause music so you can hear the news story.

Monday, March 10, 2008


I think I have been dreading this month and not really even knowing it. I just changed the calendar in my kitchen to March and my eye was drawn right to the 22nd. A day that I don't wish never happened....but I do wish sometimes we were always on the 21st of 2006. March 22nd is the day we learned of Pearl's diagnosis at our 20 week ultrasound. A day that will forever be etched in our minds. The details of the weeks leading up to that day still pop into my mind. Amazing how much you can remember.....

I do know that March 22 is a day that was created in order to fashion us into who God has called us to be...from the beginning of time. He knew that day would change our lives and now I am beginning to see how many other lives that day changed and will continue to change. Without March 22 I would not have known how to start a perinatal resource for families, there would be sweet friends I would never have known, my kids would not have the perspective on life they have, J and I would not have known what it really means to let God hold you "steady as a post" through the fierce storms of life. Do I miss who we were before that day? Yes, but I would not trade who we have become and I would do it again just to hold my sweet baby Pearl in my arms once again.

Maybe tonight I will have another dream about my sweet baby....she has been all I have thought about the past few days as I spent time with precious friends this weekend. I have only ever had one dream about Pearl......

It was the morning of the 22 of January, the day Larson was born. I remember waking up at 3am feeling so nervous about the day, yet excited in a strange way to meet Larson and whisper in his ear all I wanted him to tell Pearl. I went back to sleep thinking of those two meeting in heaven in just a matter of hours. I fell back to sleep....which is a miracle for me! In my dream I heard the door bell ring....I was getting ready for something and was in a hurry to get going. I ran down our stairs and opened the door. All I saw was the back of a little girl's head as she skipped away....a head full of black curly hair. I immediately knew it was Pearl....I couldn't say anything. Then, I heard the sweetest little voice say, "I love you mama!" Then off she went skipping......I can still hear the sweet voice in my head.

I woke up sobbing.....goodnight sweet baby girl!

Monday, March 03, 2008

What happens when daddy is gone!

What am I still doing awake? Once it gets to double digits on the clock again it is to late for me....however once again I can't turn my mind off! I am getting some work done but wanted to take a break!

Let me paint the picture here....Friday afternoon 4pm. I have not taken a shower in 2 days....R is home from school, L is sleeping, O and Z are playing nicely in the backyard. I decide to go in and take a fast! I am just about to rinse the conditioner out of my hair and I hear Z screaming! I dash out of the shower and see the neighbor carrying Z up the stairs with her chin bleeding all over!! I start to cry...Oh have I mentioned that J has been out of town since Sunday?! I grab Z and sure enough she has a big gash in her chin. Someone tripped her on the tramp and she fell on the one spot that does not have the padding on it! I try to clean her up....while O is outside crying that we are going to have to take Z to the hospital. In the meantime L wakes up and I plop her in the "circle of neglect" where she is so happy just to watch the commotion! R is a smart little man and stayed outside the whole time! Thankfully my cousin who is an ER nurse has some skin glue....we wash the wound, glue it back together and then I plop on the couch and try to breathe!

Always and adventure around here.....