Leah's Song

Leah's Aunt Callie wrote this song just for her.  Listen to her perform it at the Walk to Remember in front of many people missing their babies too!

Two Years of Tears - Both Sorrow & Joy



Leah's 20 week ultrasound



Leah's 20 week 3-D Ultrasound showing her
sweet little face and tiny hands

Leah's 20 week 3-D Ultrasound showing
her cutelittle face, hands, leg and foot

Leah's cute little fact getting ready to suck
her thumb, with her foot sticking up next
to her hand

Today is the 2 year anniversary of the beginning of our journey with Leah.  It is the day that grief entered my world.  It is the day the tears started to fall.  It was the beginning of an incredibly deep season of faith, sorrow, prayer and growth.  It is the day the thought first entered my mind, that my daughter Leah may go somewhere that I could not immediately follow her.
Romans 12:12 says, "Be joyful in hope, patient in affliction, faithful in prayer." Our journey with Leah has taken us down a long bittersweet road. As waves of grief continue to come, I must be patient as I endure these afflictions which cause pain. I need to be patient with myself as my heart heals, and I need to be patient and allow God to bring me through my grief according to His time schedule, not my own. Even in the loss of my daughter, I can still have hope. For I believe the subject of one's hope is what can bring strength and comfort in the very face of despair and seemingly hopeless circumstances. With my faith, trust and hope placed firmly in Jesus, I eagerly await my reunion with Leah in Heaven. It is by God’s strength alone, I am learning to smile through the tears, as I get better at answering the simple questions in life again. How many children do I have? I have 2 beautiful daughters, Kyla and Leah. Each is a precious gift from the Lord!

National Pregnancy and Infant Loss Remembrance Day

Today is a significant day for other parents like myself – parents who have a child in heaven. It is a day I find myself full of compassion for all of the other families’ stories I have heard over the past few years. My heart is sad not only for my loss, but for each and every baby that left behind heartbroken parents upon it’s death. I have learned that my capacity for compassion has grown incredibly over these past two years. Just as my love hasn’t run out for Leah, neither have my tears. They flow less frequently now, but I imagine I will always have plenty of tears inside to cry as I carry my love for Leah with me for the rest of my life. I miss her so much!

In remembering the pain of losing Leah, I am so keenly aware of another aspect of those memories. Is it the reality of the intense blessings that existed alongside the sorrow. So often the conversations about Leah last only a short time, only long enough to communicate that I have a daughter in Heaven. How I wish there were more opportunities to share about the deep blessings, purpose, joy and spiritual lessons learned through our journey with Leah. I am still just so proud of my daughter and the life that she lived. That’s the complexity of the word bittersweet. Yes, I am very sad. But, I am also incredibly thankful and full of appreciation for the journey as well.

Caring for Leah was a time of such clarity in terms of priorities. Everything unimportant simply melted away, and we were left with everything that was absolutely critical for us to be focusing on. We literally clung to the Lord, for each and every moment of Leah’s life. The distractions disappeared along with the less important things, and it made abiding in God so very simple. We talked more about eternal things. I remember trying to help Kyla understand the truth about Heaven. While Leah was here, I remember role-play with her how it might look upon Leah arriving in Heaven. We took turns practicing to be Jesus, opening up our arms with nothing but smiles and love as the other ran into them giggling with delight. I wanted Kyla (and myself) to fully grasp that although we are sad when someone dies, for those who know the Lord, Heaven is a wonderful place. The deepest desire of my heart now is to leave behind all the pain and evil of this world, and enter the perfection of God’s presence – and to once again be with Leah.

Living without the fear of death is not something that I believe many of my 20-something peers understand or can relate to at this point in their lives. But it is where God has me at this very moment. I’m fully trusting that He has a plan for me to still be here on earth, as my number of days are not through. But Leah’s are! Leah was never supposed to be here today with our family. Her number of days were ninety-nine after birth. While intellectually, that brings a great deal of peace and comfort to my mind, it is my heart which still aches. It still misses. It still loves.

So, on this day of remembrance, Kyla and I blow up kisses to Leah in Heaven. We light her Sweet Pea candle and take in the soft, sweet scent. I pray for all the other families who have children in Heaven. And I trust God to comfort their aching hearts, as only He is able to do. And finally, I will offer up my own prayer of gratitude to God for choosing me to be Leah’s mother. I treasure the memory of her life, and I am continually changed by the depth of my love for her. Her life still matters!

Noah's Quest

Today we joined over 100 others as we ran and walked to remember our precious babies, whose lives will never be forgotten. We took the steps that they will never get to take. We got to spend the day out in the open with our grief - but also with our pride in how much we love Leah! Luke, Kyla and I wore our matching T-shirts as we competed in the 5K race. While we didn't finish in first place, I do believe we were the first group pusing a stroller to cross the finish line. This made Kyla happy, as she deeply wanted us to win! With so many young families like ourselves, there were many, many strollers and young children. The bounce house was Kyla's favorite part, as bouncing is one thing she never tires of.

This event, called Noah's Quest, was a fundraiser for the Infant Loss Support Group that I have been attending over this past year. The monthly Brief Encounters meetings have been a huge part of my grief work. I have learned so much about what to expect in the coming months & years, as well as received confirmation for how normal my journey is compared to others who have traveled this path previously. It was good so see some familiar faces and support one another in such a tangible way. Some families had groups as large as 30 people joining them in the race. Maybe next year, we'll plan on bringing along a few more folks, to increase our team from just the three of us.

As I stare June 27th in the face, I see it as a very monumental milestone. To know that it's been one whole year since I've gotten to love my daughter face-to-face is still heartbreaking. Yet, to know that our whole family has survived an entire year, and such a tragic loss is nothing short of miraculous. God has carried us through the vallies and pits of this first year without Leah. We are learning to carry Leah's memory within our hearts. One year is not long enough to have eliminated the ache we have for Leah, but it has been long enough for us to begin learning how to live WITH that ache. She will always be such a beloved part of our family, and we will always be aware of how incomplete we are without her here.

Leah - we love you and we miss you, and we'll see you soon, Princess!

Mother's Day ~ A Collision of Joy & Sorrow

As Mother's Day approaches, I can feel everything within my body literally bracing for what I know will hit on that bittersweet day! Last year, I was blessed to have both my girls here with me. Even though I spent the day completely sick, too sick to attend church, I was not too sick to enjoy the beauty of that day! Luke, Kyla and Leah all brought me breakfast in bed. I received a beautiful set of heart earrings, one heart to wear on each ear to represent the two hearts of my lovely daughters.

How do I really WANT to spend this Mother's Day? I really want to be spending it just like last year - my heart longs so deeply to have both my girls here with me. I want to give them BOTH kisses.....to express my love to both of them! When your heart still has a lifetime of love within it for your child, and your child has left and is in Heaven, it literally feels like your heart will burst! There is now nowhere tangible to put my love for Leah! It often overflows as simply tears, but the depth and various feelings that encompass my love for Leah is beyond words. It's as if the tears are the "wasted love" that has nowhere else to go.

Who am I as a Mother? I am still fully defined, in my mind, as both Kyla & Leah's Mommy! It is all of my children who define my motherhood; and that's where my joy and sorrow collide! I am so proud of both of my girls. Kyla brings me joy every day. Leah's life brings me closer to the Lord and Heaven daily. I am a different kind of mother than most other's I know. I am a mother - though not like you! I am a mother awaiting the day I can be with all my children again! I am a Mother who feels as though a part of my life is on hold. I'm doing my best to keep moving forward in my Motherhood for the sake of my family, especially for my living child. But I am very aware of the reality of BOTH my children, and I have a true yearning to be with them both. When you are a mother, whether your children are near or far, your love still reaches to them, where ever they are.

Mother's Day is both full of Joy & Sorrow for many! It is one relationship each and every single person on earth has had. There are many who wish their mothers had done better, been healthier, or loved them deeper. There are even more who recognize and fully appreciate the daily and lifelong sacrifices their own mother made out of love and devotion to them, their child. For me, this fuller appreciation came only once I became a mother of my own. I have a wonderful mother, and I am blessed to be able to spend Mother's day surrounded by her love and support. For many others, Mother's day is just as much about missing! Some miss their mothers terribly, while other mothers, like myself, miss their children, who made them a mother!

Leah ~ Mommy misses you so much, Sweet Pea! I am eternally thankful to have spent Mother's Day with you last year, Princess. Thank you for that gift! We have the gift of memories, the blessing of love and the bond of being Mother and Daughter! Your sister, Kyla, first made me a Mother, but it was you, Leah, who completed my true understanding of Motherhood! I took care of you, baby girl, from your first cry until your last breath. Few mothers get to witness their child's life in its entirety. I saw your whole life, and I can say it was beautiful. You fought with strength and grace, Leah! You fully embraced the life God created you to live. You have brought me closer to Heaven! You still have the proudest Mommy in the whole world.

It is by God’s strength alone, I am learning to smile through the tears, as I get better at answering the simple questions in life again. How many children do I have? I am a mother of two beautiful daughters, and each is a precious gift from the Lord!

Birthday Girl

Newborn Leah - NICU

Welcome Leah

Leah's Story

In July 2008 we found out we were expecting our second child. On November 12, 2008, at my routine 20-week ultrasound, we learned that our baby girl had several complications. The ultrasound revealed Leah had a cleft lip, closely set eyes, and a very rare but severe brain malformation called Holoprosencephaly (HPE). My doctor also suspected Leah had Trisomy 13. He said, regardless of the exact medical condition, her brain most likely did not form properly enough to allow survival. It was unlikely I would carry Leah to term. If we made it to term, she most likely wouldn’t survive birth. And even if she survived birth, she would only live minutes, hours or days. We were completely heartbroken and overcome with grief that our unborn baby girl was very sick, and may not reach our arms alive. We loved her so deeply, and at that moment begun surrendering our plans for Leah to the Lord. We realized it was His plans alone that would come to pass in her life.

We declined amniocentesis, because having a more accurate medical diagnosis didn’t change the severity of Leah’s condition. The doctors predicted her life would be short, and we didn’t dare risk making it any shorter through the potential risks of the test. Our doctor advised us that the main reason most parents choose Amniocentesis is to decide if they will continue with their pregnancy. This decision had already been made in our hearts years ago, as we believe that each precious life begins at conception as God forms each child within his mother’s womb. Terminating my pregnancy and thus ending Leah’s life prematurely, by our own hands, was unthinkable! We believed Leah was a gift to our family and that our sovereign God would write her story, beginning to end. We fully understood and grasped the reality that without God’s healing, Leah would die. But for God’s glory, first, she was going to live!

On March 19, 2009, we went straight from our 38-week appointment over to the hospital for emergency induction. I was induced because Leah’s amniotic fluid levels were becoming dangerously low. In addition, my blood pressure was getting too high. During the several hours of labor, we held our breath as we watched Leah’s heart rate drop with each major contraction. Our deepest hearts desire was to meet Leah alive. We were even prepared to have an emergency C-section, should my doctor think that would allow her to survive birth. After learning about how well my first delivery had gone, he was cautiously optimistic that Leah’s could be a vaginal delivery as well. We had focused much prayer on Leah’s upcoming delivery, as we knew the shorter and easier the delivery, the better chance Leah could survive birth. Once it was time to push, her head was already crowning. Within seven minutes, and two pushes, Leah was born crying!

Leah Grace Jarmer was born on March 20, 2009 at 2:57pm. She weighed 5 lbs. 11 oz. and was 18 ½ inches long. She had blue eyes and strawberry blond hair, just like her Mommy. She was born crying and breathing on her own – answers to two of our most fervent prayers. Her first APGAR score was 8, and she was already doing so much better than we were told to expect. She spent the first 30 minutes of her life being closely monitored by a NICU team in our birth room. My first thought when I finally got to hold her was that she was so beautiful! Within her first hour of life, we invited all of our immediate family into our room to meet Leah, as she remained cradled in my arms. Her breathing rate and oxygen levels were starting to drop, so they wisked her off to the NICU. My husband Luke never left her side. It was several hours before I could go and join them, although it felt like an eternity. As I waited, I felt the deepest sense of thankfulness for all that I had already gotten. I’d gotten to hold her, kiss her and tell her I loved her. She had overcome such immense odds to simply reach my arms alive. I felt like if this was all I was meant to have with her, I would choose to accept that. But at the same time, my heart hoped and yearned for so much more!

Upon birth, the Neonatologist informed us he was quite certain that Leah's body did not look like a typical baby with a chromosomal disorder. The tests came back in the coming weeks, that Leah's chromosomes were in fact normal. At that point, HPE, would be her complete, yet still very adverse, diagnosis. Leah's brain malformation had been diagnosed by MRI as Alobar, which is the most severe type of HPE. The diagnosis itself didn’t translate to an exact prognosis for Leah’s survival. Doctors gave us a general timeframe of 0 –6 months. They said that her length of survival would depend greatly upon the specific degree of challenges her body faced. They shared honestly with us that Leah faced very intense and severe challenges, and her life would be on the shorter side of that range. Again, we were told that most likely Leah would only survive a few more days. We continued to love her unconditionally, accepting her challenges and desiring to give her the best care possible for her entire life.

Leah spent her first 9 days of life in the NICU. The doctors ran tests, including an MRI, EEG brainwave seizure study, and an ultrasound of Leah’s brain. Her HPE diagnosis came to include the following challenges: severe seizure activity, lack of pituitary function, inability to control her body temperature, Diabetes Insipidus and she would require a feeding tube. The NICU staff was amazing, but they reached the point in Leah’s care where there simply was not anything additional they could do to help her. Her condition could not be treated, and her seizure activity was increasing daily beyond a healthy level. They predicted she could survive only a few more days due to the stress from the seizures. So, the NICU made plans to send Leah home on Hospice care. We could bring her home and continue the exact same level of care, including feedings and medications that were helping to manage some of the milder symptoms. We wanted to be with Leah for the remainder of her life, in the comfort of our own home.

On March 29th, Leah came home! It was wonderful seeing the love between big sister Kyla and our little Leah. Luke was able to be home with us the whole first week, which was a good thing because Leah kept us plenty busy. For the next three months we felt blessed to have the opportunity to care for Leah. We excitedly put together her nursery and thoroughly enjoyed making her a part of our lives. She went many places and impacted everyone she met. Leah loved church and all the attention she received from our friends and family. My favorite memory was taking both my girls to the park and library together. Kyla enjoyed giving her sister “baby hugs and baby kisses”. Leah’s favorite position was to be snuggled up against her Mommy’s shoulder, which would quickly put her to sleep. We cherished her every smile, every hiccup, every yawn and even every cry!

Caring for Leah was very intense, but a huge privilege as well! Her daily schedule included tube feedings every three hours around the clock. Leah received medication to help control her seizures (but several hundred a day was still very intense), as well as medications to replace the hormones lacking in her body, and she received a very large dose of love from Mom, Dad and big sister Kyla daily. Her seizure activity increasingly interrupted her sleep, so she was awake much of the day and night, needing our love and care. God gave our family the strength to endure and function on very little sleep the first two months. Hospice nurses came for an hour visit once a week, to simply check her vitals and share their amazement at how well Leah was doing, considering her challenges. The final month of her life, we were able to hire a nurse to come in four nights a week to allow us to get some long overdue sleep. Everyone was surprised that in her own way, Leah was thriving. Leah was still Leah, with all her challenges, but she was growing and responding to our love. I am so glad that I decided to pump and feed Leah my breastmilk. She nearly doubled her birth weight in three months, growing to just over 10 lbs. We joked that with all her baby chub, it was obvious that one challenge she did not face was lack of nutrition. Leah was so easy to love, and we were honored to have the chance to realign our lives to care for her.

We had prayed earnestly for Leah’s healing here on earth, but God had a different, yet sovereign plan. On June 27, 2009, Leah went to Heaven and was eternally healed! She took her last breath peacefully in her Daddy’s arms. There was an instant acceptance in my heart that Leah was with Jesus and with that reality God gave me a very real sense of peace. I also learned that it is possible to experience both joy and sorrow at the same moment. Even in Leah’s death, God’s goodness and provision were clearly seen by our family. We truly believe Leah’s survival for ninety-nine days was our miracle! She had a greater impact for Christ in her brief three months than most people have in their entire lifetime. We are so incredibly proud of our “Leah Sweet Pea-Ah”. Through our year-long journey with Leah, starting with her conception, pregnancy, birth and life, we learned to trust God day by day, and moment by moment. We learned to cherish our daughter, and accept the gift of her life, without knowing how long we’d be allowed to enjoy her presence. We learned that with God, it is possible to survive saying goodbye.

“Goodbye Leah. I’ll always love you. I’ll love you here, and I’ll love you there!” These were Kyla’s final words to her baby sister, the night before Leah went to Heaven. None of us knew that the very next morning Leah would be “there”.

In receiving a poor prenatal diagnosis, there is always room for hope! In both caring for our special needs child and upon saying “Good-bye” to our precious daughter, we never gave up hope! I’ve recently read an impactful book called Holding On To Hope, by Nancy Guthrie, in which she takes us by the hand and guides us on a pathway through our pain – straight to the heart of God. I believe the subject of one's hope is what can bring strength and comfort in the very face of despair and seemingly hopeless circumstances. With our faith, trust and hope placed firmly in Jesus, we eagerly await our reunion with Leah in Heaven.

"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Romans 8:38-39

The Jarmer Family – Luke, Kristine, Kyla & Always Leah
Kristine147@hotmail.com (Please contact us if you are in need of support)


If your child has recently been diagnosed with Holoprosencephaly, please visit the support group, Families for HoPE at http://www.familiesforhope.org/ .

7 Months Apart

Today is the 7-month anniversary of the day we lost Leah - the day she went to Heaven – the day that everything changed!

I’m honest when I report that things aren’t “all better” yet for my family and I. The analogy of grief coming in waves is so very accurate for me. When several seemingly good days pass, I seem to know that the next harder day is just beyond the horizon. I’ve been attending a support group specifically for parents who have lost a baby, appropriately named Brief Encounters. It meets once a month in Portland, and is usually attended by between 12-20 other parents. It definitely meets the need I have to continue talking about Leah, to openly express my sorrow through tears and to remember I’m not alone in my painful healing.

Yet, it still can feel quite lonely in how much I PERSONALLY miss Leah. How I secretly wish that I wasn’t the only person, who wakes up each day, takes stock of life as my mind becomes conscious, and has to experience the reality of remembering that Leah is no longer here. It’s just those twilight moments as I awake, that I think about my children and their needs for me at that very moment. “Does Kyla need me? No, I haven’t heard her awake yet. Does Leah need me? No, Leah is in Heaven now.” Then the painful reality hits me anew, each morning, that Leah isn’t here anymore, and I can’t go check on her or sing her the “Good Morning Song” like I will momentarily be singing to her big sister. Yes, I’m growing more and more accustomed to this reality hitting me each day, but it still makes me even less of a morning person. It’s just so hard to face each new day, without your child – without a piece of you – present to be a part of it.

Knowing that Leah is loved, remembered and missed by other people means so much. My dear friend Heather, has sent me a card each month on the 20th (Leah’s month birthdays) since Leah passed away. I was so touched and brought to tears in July when she sent Leah a 4-month birthday card. I was blown away when another one arrived in August, on her 5-month birthday. I didn’t really expect the one that arrived in September, October, November or December. I’d completely forgotten the possibility of one arriving last week in January, and I was brought to tears yet again by her thoughtful gesture. They’ve been lovely cards written to Leah, in honor of her special days. Heather’s words are so simple and loving and tender. I am so in awe of her devotion to sending them, and as a busy mother of three herself, it makes the effort and love behind them even more amazing to me. With the importance of support like this, I’m so blessed to be able to offer my support to others.

It seems like many other parents who lose a child start some sort of Non-Profit in their honor to reach out and support others. Some parents have written books about their loss. Others start support groups. I have been trusting God to use this painful experience for His glory, but I haven’t felt led to do any of those above-mentioned things. At times, I feel like I SHOULD be doing some big major project in Leah’s honor. Yet, it seems that God is using me in a much more individual type of way. Since Leah’s birth, God has brought Mom, after Mom, after Mom, after Mom into my life who have received a similarly terminal prenatal diagnosis for their unborn child. I think the number is approaching 10, with one giving birth last week and another due this week. I’ve been in touch with these mothers, who live all across the country, through email, phone calls, letters and Facebook. I never would have imagined that I’d have the emotional stability to walk along and support another person so soon after Leah, let alone 10 others, all of whom have already lost their babies. Yet, I feel equipped in each case to provide a listening ear, prayer, resources, “advice” for preparing for the baby’s arrival, and sensitivity towards their grief. Knowing that God has brought each Mother into my life for a dual purpose is so essential to my ability to open my heart again. Each mother was given less than one day with her precious baby, which reminds my heart to be so thankful for God’s gift of 99 days together with Leah. Yet, still I can relate to the reality of that number of days being far too few by a Mother’s accounting. Each of our arms is empty, our hearts miss our babies terribly, and the journey of grief has arrived and will be sticking around much longer than we’d like. I’ve always known myself to be an “emotional” person, and that too is an advantage, as I truly believe I have an unending supply of tears (it’s the tissues that still seem hard to come by at my house).

It’s been a whole year since the creation of Leah’s CaringBridge website. It has allowed those who know us to follow Leah’s journey. Because of the simplicity of the Internet, we were able to receive prayers and support from so many around the country that have never even met our family. They heard of us from someone they knew and quickly became part of this journey with us. To say we’ve been overwhelmed by your love and support is truly an understatement. I know God has entrusted ME with the responsibility of sharing Leah’s story. That is why I have continued to write and update this CaringBridge website even after Leah’s medical situation ended. It has been provided to me at no cost for the past year. Now it’s time for that space to be used by another person with another story. Yet, I know Leah’s story isn’t done being shared – it isn’t done being used – it isn’t done teaching about God’s faithfulness. I have moved all the content over to this blog for a more permanent location. I will continue to update it along the way with new insights from our journey with Leah. We hope to be a support to others in a similar circumstance. We'll walk beside them down this "Road of Bittersweet".

God Is Still Holy

God definately used music to speak to my heart and calm my fears during our season with Leah. You Are Still Holy, was one that I sang to Leah to help us both remember that no matter what comes our way, God IS still Holy.

You Are Still Holy

lyrics by Rita Springer
http://www.youtube.com/watch?v=02UQUKKk_Lo

Holy, You are still holy
Even when the darkness surrounds my life
Sovereign, You are still sovereign
Even when confusion has blinded my eyes

Lord, I don't deserve Your kind affection
When my unbelief has kept me from Your touch
I want my life to be a pure reflection
Of Your love

And so I come into Your chamber
And I dance at Your feet, Lord
You are my Saviour
And I'm at Your mercy
All that has been in my life
Up 'til now
It belongs to You
You are still holy

Holy, You are still holy
Even though I don't understand Your ways
Sovereign, You will be sovereign
Even when my circumstances don't change

Lord, I don't deserve your tender patience
When my unbelief has kept me from Your truth
I want my life to be a sweet devotion
To You

And so I come into Your chamber
And I dance at Your feet, Lord
You are my Saviour
And I'm at Your mercy
All that has been in my life
Up 'til now
It belongs to You
I belong to You

And so I come into Your chamber
And I dance at Your feet
You are my Saviour
And I'm at Your mercy
All that has been in my life
Up 'til now
It belongs to You
I belong to You
You are still holy
You are still sovereign
You are still holy, Lord
You are still righteous
You are all-knowing
You are still holy