Embrace the Journey with Carol-Lynn

By Jody Pautsch-Wygans

About three and a half years ago, we learned of an expectant mother who was looking to find a family for her unborn child. Shortly after we agreed to bring the child into our family we found out that there were “complications” with the baby. In utero doctors diagnosed Carol-Lynn with Holoprosencephaly (aka HPE or affectionately referred to as HoPE). We didn’t know what this meant. We didn’t have the “luxury” of asking doctors our questions. The information we were given was very limited by Google and the information the birth mother was able to comprehend and willing to pass along. I don’t know to what extent she asked questions and I don’t know to what extend those questions were or were not answered. All I know is that the information that was passed along to my husband, Greg, and myself was bleak to put it lightly.

We were at one point told by the birth mother that she no longer planned to let us adopt the baby because she didn’t want to give us “damaged merchandise.” We were told her chances of surviving birth were minimal at best and that if she did indeed survive to birth, her chances of living any length of time were even more slim. We were told she would have severe physical deformities, mainly facially. We were told that her ability to learn and to perform even the necessary tasks of survival such as breathing and eating would be greatly compromised at best.

NEVER were we EVER given any glimpse of HOPE for this unborn child. Fortunately, that’s not how my heart (or mind) work. I don’t believe you EVER just GIVE UP….especially on a child. I believe that God always has a plan and that though we may often not comprehend His plan, it is there. And while I realize that there are sweet spirits who enter this world for but a brief very precious moment, we can NOT give up on any of those sweet spirits until the time comes that our Father in Heaven calls them home to be with Him again. And when it came to Carol-Lynn, in my heart of hearts I believed she had been put into my path because I was supposed to hold out HOPE for her. So regardless of what bleak information I was told prior to birth, I continued to hold onto HOPE for her.

I continued to pray for her and I continued to love her just as I would have had she been developing within my very own body. For while she wasn’t developing within my body, she WAS developing within my heart and spiritually I could FEEL her sweet spirit surrounding me. There was no way I was going to give up on her. But I will admit that I felt very much confused, alone, and scared. As I felt that if I was ever going to hold that precious child in my arms, it would be with minimal support outside of my immediate family and with very little background knowledge as to what I was facing until I was actually facing it. In hindsight, this may have been as much a blessing as it was a curse.

Fast forward a few months and our precious angel had, indeed, been born. She entered the world despite the negativity surrounding her. Sadly I missed those first moments. Though it had been the plan that Greg and I would be in the hospital when she was born, things changed and we were not informed of her birth.

I would like to put a brief disclaimer in here that I do NOT hold any of the events that took place against her birth mother. While this was one of the most difficult times in my life, waiting and wondering what would happen, I CAN NOT IMAGINE what the birth mother was going through. And I don’t for a minute want to allow any negative thoughts coming from those reading this because this woman gave my family one of the greatest gifts another human can give. And she did so with a generous heart. And to this day, she loves our sweet angel. She just knew she was not equipped to raise her. I don’t walk her path, and I don’t have the right to judge her thoughts nor her actions. But I do have the right and the ability to be FOREVER thankful for the most precious gift that she gave to me….a true angel residing in my own home.

Anyway, I was given one chance to meet Carol-Lynn while she was in the hospital in the NICU. Basically that was to be my chance to say hi and good bye to the daughter that I knew was supposed to be in my home. Her birth mother had decided to take her “home” on hospice care after a little more than a week stint in the NICU. Not many days after they left the hospital I received the text I had been PRAYING for…”Come get her.” Long story short we did, indeed get to become parents to Carol-Lynn and we began a journey that would change our lives FOREVER. But we were completely alone and unaware of where to begin for answers. Then in steps Families for HoPE.

There are NO WORDS to express the instant family we found when we discovered Families for HoPE. The support is unmeasured. We slowly began reading the stories of other families who were dealing with similar issues as our own when it comes to the medical aspect of Carol-Lynn’s life. We developed relationships over the internet and quickly knew that if ever we needed advice, a shoulder, understanding, etc, we KNEW where to find it.

But in our wildest dreams we never imagined those people who we were watching from afar would ever be physically IN our lives. We saw them more as a part of a little fantasy world. Sort of like reading a good self help book, but getting active responses to any questions that arise. While it was amazing to have that instant access to families via the internet, we still felt somewhat alone in our journey. UNTIL we heard about this thing the group does once every two years…a CONFERENCE! Seriously?

A CONFERENCE where these families gather and share experiences, learn from one another, learn from a group of doctors and professionals TOGETHER, support one another, hug one another, cry together, laugh together, experience THIS part of life TOGETHER? ARE YOU KIDDING ME? What seemed like a fantasy world, could be a part of REAL life? IF ONLY!!!

Yes, the idea of a conference sounded amazing. And I knew, without a doubt that it was EXACTLY what we needed. But what would hold us back?? MONEY!!!! When we adopted Carol-Lynn we were truly in no financial position to be able to AFFORD an adoption. We already had four healthy, active boys and financially we were busting at the seams just to support them. But God placed this little girl in our path and He placed it in our hearts that we needed to bring her into our home. So, despite our own financial reservations, we took a leap of faith and placed our faith in the Hands of the Lord to help provide financially. Somehow it all worked out…the funds showed up here and there in small bits and in strange ways which funded the actual adoption.

But about the time we finally had that nearly paid for Greg lost his job. Finding a new one was proving to be difficult and a trip to Texas to this “dream” that our support group was calling a conference seemed like a luxury we could NOT EVEN CONSIDER being able to afford. But then we found out that there are scholarships available. What does THIS mean?

Well, basically if we could get ourselves TO the conference, we could get help in funding part of the expenses OF the conference. While even funding the trip itself would be a chunk, we set out to raise funds to pay for gas, meals along the way, and hotels along the way. And lo and behold, we were able to raise almost exactly what we needed to make that trip possible. AND once we got TO the conference, Families for HoPE helped us to afford the conference itself. This was a blessing that again, has no words.

I was asked to write about journey to the conference–physical, logistical, emotional, spiritual, etc. Physically, it wasn’t necessarily easy. We had raised funds to get us there. But we still had to travel as inexpensively as possible. We couldn’t afford to fly our family, so it was a long car trip, where we drove long hours to limit the need of many hotel stays. We ate sandwiches we prepared by the roadside in order to cut back on the expense of eating out. Traveling this way meant our kids were stuck in the car for extended periods of time and we all know how that can often prove to be difficult, but they were amazing and they knew the sacrifice was worth it.

Traveling like this with Carol-Lynn also had its challenges. At the time she was not yet on her feeding tube so her nourishment was in the form of a bottle. This was a long and difficult process and often while we traveled she would outright refuse to eat. Carol-Lynn had been termed “failure to thrive” and was already struggling to get enough nourishment on a good day. While this was in many ways VERY stressful for us, it also meant that there was less to clean up when she spit up. For, with Carol-Lynn 75% or more of what went down came back up. So yes, traveling like this at that time was a bit stressful but we believed that it would prove to be worth the effort.

In addition to the concerns over her nourishment during our travel, we stressed over seizures along the way. At the time Carol-Lynn was having intractable, status seizures, meaning it was not unusual for her to seize for hours upon hours, even after we had administered her rescue meds. Often she required a visit to the emergency room where they would give her additional medications to help bring her back to us. The stress of being in route to anywhere at that time was real. But again, we believed it was well worth the risk involved.

Emotionally we NEEDED this for our family, for ourselves, for our daughter. We NEEDED to physically see and hear and be with other families who truly understood our journey in a way that no other individual in our lives did. Did we know other families with special needs kiddos, ABSOLUTELY we did (and do). And what a great support those individuals and families are. But there are absolutely NO WORDS to describe the gain that we experienced by being a part of this conference. ABSOLUTELY NO WORDS!!!

Spiritually this was one of if not the most uplifting experiences I have ever been blessed with. As we gathered in the hotel filled with other HoPE families and other HoPE children, the spirit in that hotel was STRONG! Imagine, being in a room filled with angels…THAT is what it was like. We gained insights, we saw things we could use to make our lives easier, to make life more fulfilling for Carol-Lynn. Later as we gathered in the hospital conference rooms with these same families and all of the experts in the field, we learned things and we got ideas, and we knew we were on a path we could continue with confidence.

We were given a chance to learn, to play, and even to DANCE with these families. I get goosebumps even as I type that word dance. Because at the conclusion of the conference they put on the most amazing prom I have ever experienced. There were no labels, there were no limits….EVERYONE was invited to dance and to sing and to play together. My daughter danced with her daddy in the most glorious dress and she heard her friends dancing with their mommies, daddies, sisters, brothers, friends.

What did being able to attend this conference mean to our family? It meant EVERYTHING!!! It meant those families whom we had met only online were REAL and that they really WERE a part of our world. And we were able to build bonds that will last a life time. It meant that as we reached out to and met other families online that we KNEW they were real too and that they would some day be in our lives not only via the world wide web but physically a part of our lives.

One more thing I need to add….not only were we able to rub shoulders with other families in a similar place upon their HoPE journey, but even more amazingly, we were able to rub shoulders with other families who had sent their HoPE loved ones into the arms of our Father in Heaven. And they still remained a part of this amazing family who are there to support one another through the ENTIRE journey. Because guess what folks? This journey is one that NEVER ends. It is an ETERNAL journey. And we are all on it together. During the days of the conference we were lucky enough to take time out to honor those loved ones who were watching from on high. And we were able to pause and feel of their spirits as they still touched our lives from their heavenly thrones. I was honored to experience every aspect of this conference but the moments we spent releasing balloons to honor each HoPE child who was watching from a heavenly home were moments that will forever live in my heart!

Families for HoPE exactly that….a place to find HOPE when the journey seems bleak!!!

You can help make the 2018 Family Conference on Holoprosencephaly a reality for HPE families with a donation to Families for HoPE.

2 Comments on “Embrace the Journey with Carol-Lynn”

  1. Jody,

    What a wonderful story. I’m so glad you all have Carol-Lynn in your lives now, and that you have been able to share in the HPE community. And congratulations–you know more now about HPE than many of the experts, even the ones on Google!

    My daughter and I attended our first HPE conference this summer and found it amazing too. I hope you have inspired other familes to make the effort to attend the next one.

    Wishing you and your family all the best,