A Walk to Remember Leah

On Luke's upcoming birthday, October 10th, our family will participate in a very special event. A local non-profit, Christian organization called A Butterfly's Touch, is hosting a memory walk and ceremony in honor of the precious lives lost far too early. Their mission is providing support to parents whose lives have been impacted by the heartbreaking loss of a child due to early pregnancy loss, stillbirth, or newborn death.
This was the first organization that I found when searching on the internet back in November. The director called me personally to talk about Leah's diagnosis and offer her support. She connected me with another mom in my area who had just delivered and lost her precious son only a month prior, and whom was wanting to be there for someone else in need. When I "met" this other mom, Shannon, over the phone, I learned that she had the exact same OBGYN as I had, and we'd both been referred to the SAME high-risk clinic. Her experiences had been different from mine, with doctors not respecting her wishes to carry her son Owen, whom they knew had Trisomy 18, and was not expected to live very long. Yet, Shannon is an advocate. After her unpleasant experiences at this clinic, she gave feedback to our OBGYN of doctors NOT to refer a patient to, should that patient choose to continue with their pregnancy. She also advocated that if the parent's choose to carry such a sick baby, and there wasn't anything additional that the specialist could do, they be allowed to see their regular OBGYN.
She felt the pressures of her specialists to abort Owen, and it made her journey that much more painful and difficult. Her value of Owen's imperfect yet beloved little life was not understood by many of the medical professionals she came across during her pregnancy. Shannon's willingness to speak up after losing Owen, paved the way for Luke and I to walk a much different path, only a few months later. Our OBGYN chose a different specialist to refer us to. Our specialist never even ONCE mentioned thinking we should abort Leah. Now whether me speaking up the moment that I understood how sick Leah was, prevented him from offering that option, I'm not sure. But he was able to fully accept and respect our value of Leah, and our decision to let God bring Leah's life each day that He had planned. We did not feel pressured to choose abortion of our very wanted and loved baby. As there was nothing the specialist could do for us, we returned to our regular OBGYN, and got to continue the prenatal care for several more months just as any "normal" pregnancy. It was much closer, cheaper and more convenient for Luke to attend appointments. There also seems to be a much different attitude among the specialists that deal with high-risk pregnancies every day. They are much more comfortable and experienced supporting parents who chose to abort an unhealthy baby.
I mention this part of our story, since I've learned so much about just how many families receive a "poor prenatal diagnosis" during pregnancy. You'd be shocked by the number actually. And as I’ve shared, the reality is that the number of sick babies who are allowed to be born, is less than 5% of them. With a condition similar to Leah's, about 95% of parents choose abortion. This statistic fails to mention that so many of those 95% were wanted children.....up until the bad news, and in many cases even with the bad news. 95% of patients with news like us, do abort their baby between the 20 – 26th weeks. That’s 5 and 6 months along mind you, and the mother has already been feeling that little one squirming and moving around for months! Most families have already begun a nursery, picking out names, going shopping for baby items. Those families fully understand they are carrying a new life, and that it is already a little baby. And they are already fully in love with that little one. It’s a heartbreaking reality that the medical field is even giving families options such as they are. Many families are misled into thinking an abortion for medical reasons will be less painful than waiting for their little one to arrive. From what I’ve learned and experienced, I don’t believe that’s actually the truth. Yet, the doctors’ advice is given purely on a medical level, and not on an emotional or psychological level. The medical world is offering families NO emotional support or assistance in understanding the realities of caring for a disabled or sick child. We were told that Leah would die.....PERIOD! We were given NO recourses, NO ONE to talk to, NO websites to visit, NOTHING! We were told to simply come back in when the baby stopped moving!

I've also learned that the medical world seems to offer the worst case scenario for families. They only give families the statistics. They don't themselves possibly even have the most accurate information of just how far these "dying" babies can truly go. We've learned of babies like Leah who have lived into their teens. We've learned the limitations of medicine and tests to predict what any given child will or won't ever be able to do. We've learned the importance of holding onto HOPE, in a seemingly hopeless situation.
The medical field offered us NO HOPE for Leah, both during pregnancy and during her life. Because of this scenario, many, MANY families feel that the medical advice of aborting their baby, is in fact in the best interest of their little one. They are told that their child will suffer, have no "quality" of life, and eventually die. Who'd voluntarily sign up for that! NO ONE! Yet, EVERY family I've come across that has continued with their pregnancy saw incredible value, love, joy and blessing. Some of these same children are blowing away doctor after doctor by what they can accomplish. Some of these children did have VERY brief lives. But I'm also amazed at how many of these very sick babies were brought alive into their loving parent's arms before going to Heaven. That scenario alone was "Not the most likely outcome" according to the specialists. They were telling us these babies are just too sick to survive birth. And truly some don't. But why can't they tell the heartbroken families that so many of them DO make it to term? So many of them DO survive birth. So many of them DO get to meet their parents and siblings, and grandparents. They get to experience love, and their families get the opportunity to give it. There often is enough time to create memories, take pictures, create keepsakes, sing your new baby a lullaby.


Prenatal Partners for Life
For Luke and I, the decision to continue to carry Leah was already made long before she was brought into our family. She was loved, and wanted and valued.....NO MATTER WHAT! Finding support was the challenge. There is one organization that I'd highly recommend to ANYONE who has just received any type of "bad news" during pregnancy. I'd encourage you to bookmark this site, and have it ready for the next family that God brings your way in a similar situation to us. Each of you has become involved with our journey for a reason. And already, I’m getting emails from some of you saying, "This sounds sadly familiar to your Leah".

The organization is called Prenatal Partners for Life. This non-profit met our family exactly where we were in November. Their goal is to provide information & encouragement for carrying to term with an adverse prenatal diagnosis and support for raising a child with special needs after birth. They offered us HOPE, and the stories and support of so many others choosing life for an imperfect but loved child. The other message they bring is that you are not alone in this journey. I'll be adding Leah's story to their site in the coming months, as our family wishes to share our hope with others.
http://www.prenatalpartnersforlife.org/

A Butterfly's Touch
The other organization that I found, happens to be local. They share the compassion of Jesus Christ by providing support to parents experiencing infant-loss during their time of need. They accomplish this by providing memory boxes and remembrances for the parents, providing information and support through our free lending library and helping to lessen financial burdens through a fund to help with funeral and burial expenses. And like I said, they introduced me to Shannon. That relationship alone has brought me so much healing and compassion. Being a few months ahead of me in this journey, Shannon knew exactly what I was going through, and she wasn’t afraid to reach out in love. She brought me gifts for Leah at Christmas. It was her lavender blankets and clothing that Leah was wrapped in at the NICU. She gave me a CD of music that addresses the loss of a baby, which has become my soundtrack over the past year. The songs bring the tears, but they help me to know that I’m not alone in my loss. Others have felt this same pain, same emptiness and know the reality of how much harder grief gets in the months after loss before it ever gets easier. It’s funny how much support it shown to one grieving that first month, while at that time the shock is still in place allowing that person to simply function. As the months begin to pass, the shock wears off, and the feelings are felt with a new depth, overwhelmingly, life altering and all consuming reality. No one, except Shannon, told me it’d hurt worse 3 months down the road, than it did the day we lost our babies. She also has a 4-year-old child, so she’s having to juggle grief with raising a preschooler. Shannon also made Leah’s little name bracelet that looked so cute on her cubby little wrist. Her phone calls checking up on me during the pregnancy, and her willingness to reach out to me in true empathy has been priceless to me. If it weren’t for A Butterfly’s Touch, I wouldn’t have met Shannon.
A "Walk to Remember"
Remembering Little Lives Lost

Join us in this FREE event for families honoring the memory of the nearly 875,000 babies who die each year through miscarriage, stillbirth, or newborn death.

Participate in the one-mile Walk to Remember,
make a scrapbook page for our memorial album,
visit with others during the dessert reception,
and help us honor the little lives lost at our memorial ceremony.
Saturday, October 10th
9 AM - 12 PM
Valley View Church
11501 SE Sunnyside Road, Clackamas, OR

Our family will be walking in Leah’s honor at this event. It will be a small event, as it’s the first one this group has ever held. There will probably be a handful of families, excited but cautiously coming together, unsure which emotions will be stirred at any given moment. Yet the purpose of this walk is simple: Come and remember your child! It’s an event to invite others to, so I am inviting each of you. If you’d like to join us in remembering Leah, please come! If you’ve lost a little loved one, or simply lost a little one whom you loved – Come! I now have met faces to match the statistics of just how many parents lose a baby. One in four pregnancies ends in miscarriage. Seventy-five percent of fatal deaths of infants occur in the first twenty weeks. These numbers are staggering. Why then are we made to feel that these losses are relatively uncommon and that only a few people experience them? These statistics translate into empty arms, broken hearts, and many childless parents.
Many of you have been heartbroken from a miscarriage, knowing full well how few others know the depth of your loss. If you’ve lost a little one, even many years ago, and you’d like an opportunity to share the reality of that precious life that has forever changed yours, though few others even knew they ever existed – come! You can come and share as much or as little of your story as you’d like. There will be an opportunity to make a page about your child for the group’s album. If you have no pictures of your baby, you can bring a verse, or a poem, or simply a letter to your unborn child. We got the opportunity to meet Leah before she left us, yet so many other parents never get that chance.
It’s not very often that someone else will ask you about your child, who’s now in Heaven. On Saturday, October 10th, from 9am – noon, you can choose to remember a precious life that you cannot hold in your arms today, but whom you hold so tightly in your heart.
So many of us know other’s who have lost a baby. Please tenderly pass the info about this walk onto them. I know it is of the most sensitive nature, but you might be surprised how appreciated the mentioning of their loss is. It seems to be forgotten by others so quickly – yet it is a loss they will feel for their entire lives. Many people have so much love and compassion to offer others as a result of their experience of losing a baby. The Walk to Remember will be a time for remembering, healing and sharing the love of little lives that were far too short.
If you feel at all interested – come! The life of each baby is significant and worth remembering!

All the information you need is found here: http://www.abutterflystouch.org/events.html