Take Heart

Spina Bifida & Scars: Carrie Holt's Story

• Amy J Brown, Carrie Holt and Sara Clime • Season 3 • Episode 129

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Take Heart’s host, Carrie, shares her personal experience as a mother to a child with Spina Bifida, who has undergone 61 surgeries. She talks about how having a child with a disability can feel like being in a pit and how God sustains and loves us even in the hardest times. She encourages us to let God write our own story, even the painful parts, and to let go of unrealistic expectations and having all the boxes checked. Carrie also shares the reasons why you should write your story down, keep anything that brings you encouragement and allow God to give you what you need each day. 

Ep. 129; May 23, 2023; 


Key Moments:
[1:33] Toby’s diagnosis and medical needs
[5:10] Reading my journals from this time period
[6:34] Our story is a story of scars
[11:00] God will give you a new song 

Resources:
Psalm 40:1-3
The Other Side of Special
Scars by I Am They

If you enjoyed the show:

Carrie M Holt
Thank you for joining us on Take Heart, where our goal is to offer encouragement, give hope and insight, so you can flourish on your journey as a special needs mom. All of our resources, including an entire written transcript of this episode, is available on our website at www.takeheartspecialmoms.com. 

Hi, there. It's Carrie M. Holt today, and I want to share a little bit about my journey and my heart behind writing the book The Other Side of Special. I'm similar to Amy in that I love stories, especially true ones. I have found that stories give us courage; they give us hope. I enjoy books that end well. This is also true of movies, and I'm not a fan when a book ends poorly. I always think, don't leave me with no hope. The issue with books that all wrap up with the events in a nice, neat package means it doesn't always mimic our true reality. On the other hand, we always need hope. Every great story, those that end with resolution and hope, reflect the greatest story ever told: the one of Jesus's redemption. I wanted to write this book, and I want to share my story today because I want you to have hope. I don't want you to ever give up. I walked into the journey of special needs parenting while I was still pregnant. We were joyfully expecting our third baby, although it was with some trepidation because we were soon to have three boys in three-and-a-half years. I went in for my 20-week ultrasound expecting to hear the news of a healthy baby. After all, our two children before that were healthy, and the precedent had been set. Afterward, I hated the phrase "as long as the baby's healthy." We're praying for a healthy baby, which is great, and we should do that. But mine wasn't, so what did that mean? I remember wandering through the aisles of the Babies 'R Us feeling like none of the items they were selling in that store mattered to me anymore. They were items I couldn't purchase. My son had a feeding tube, and he didn't need bottles. For that same reason, he couldn't wear zip-up pajamas. It sounds so silly, but I couldn't wait to have another baby who could wear zip-up pajamas. Our son also had surgery on the open hole on his back after he was born. He had this massive scar and bandage on this little tiny five-pound baby, and he had to wear those Have shirt onesies that snapped across the front. We used to say that he looked like Obi-Wan Kenobi. 

In fact, we called him to Toby-Wan Kenobi. What other moms were dealing with nighttime feedings, lack of sleep, and learning how to get some rest. I was driving back and forth to a hospital, worrying about shunts, projectile vomiting, and whether my son would survive to breathe his next breath. 

During those early days, God gave me some very important verses that I have carried with me throughout my journey, Psalm 40:1-3, and they say this, "I waited patiently for the Lord, and he inclined to me, and he heard my cry. He also brought me up out of a horrible pit, out of the miry clay, and set my feet upon a rock and established my steps. He has put a new song in my mouth, a song of praise to our God. Many will see it in fear and will trust in the Lord." If you've ever had a child in the hospital for more than a couple of days, especially if you spent some time in an intensive care unit like the NICU or PICU. There's this hospital psychosis that happens where you don't really know day from night. You begin to lose touch with reality. It feels like the darkest of pits. Sometimes this journey of having a child with a disability feels like you're in a pit. The first hope that I want you to hold on to, and the reason why I wrote The Other Side of Special is because I want you to hold on to the hope that God is near to the brokenhearted. He sees you in your pit. He knows you, and he wants you to reach out to him. The verse says that he inclined his ear to us when we cry out loud. He sees you in the miry clay that's sucking you under, and he listens to you and me. our son ended up spending eight days in the hospital. He ended up coming home for about 11 days, and then he had his Chiari crisis. That was the malformation in his brain where breathing and swallowing were impacted. The next 64 days we spent in the hospital. We spent 30 of those days in the ICU, and he had three more surgeries. 

Then we brought home this medically fragile baby that was hooked up to a pulse-ox, oxygen tanks, ventilator, feeding pump, and nursing care in our home. That was when real life started with three kids, three and under. I felt like I was drowning. I journaled a lot during that time. I have gone back recently and read those journals. 

I want to reach through the pages and give myself a hug and tell myself to chill out. I was so hard on myself. A lot of my journal entries are filled with pages of how I need to be a better mom, and I need to be a better wife, and I'm failing this person, and I'm failing that person. I was always trying to measure up to a standard of a mom that I could never attain. The second hope that I want you to hold on to is that God will guide you and Mama. You're doing a great job. Stop striving for some standard of expectations that you're never going to measure up to,  standards that you've set up for yourself, or that social media is trying to tell you that you need to measure up to, and maybe even the church. Let God be your guide. Let His word be your guide. His greatest desire is a relationship with you. You don't have to perform. You don't have to check all the boxes off. Let him be your guide. Let him establish your steps and show you where you're supposed to be. 

If I would tell you every story of our hospital stays, and the medical things that have happened to us over the last 16 years, this podcast would last for days and days and days. Suffice it to say that I characterize the next 16 years of our journey with one word: scars. Our story is a story of scars. My son's body is covered with them. He ended up having 56 more surgeries, and the list is long. There have been times when I have struggled with so much jealousy. After all, Spina Bifida is the most common, permanently disabling birth defect in the United States, and we took the road less traveled. I've often gone down the road of wondering, What would his life have been like if he didn't go into respiratory failure as a baby. If he didn't have a trach and a ventilator or a feeding tube, would he have learned to walk? Would he struggle so much with learning needs? Yet, I'm learning to view my son's scars as symbols of his survival, courage, and perseverance. Even greater than that, each scar is a testimony of God's sustaining power. He doesn't get tired of us coming to Him with our prayers, our desires, our anger, and all those messy emotions that we talk about in the book. His mercy and love are always there; they never run out. He has been with us through every single surgery, every single ounce of pain. He is with you through every surgery, every IEP meeting, and every behavioral meltdown. He is with you. Your scars are also a testimony of His mercy and love. There's a group called I Am They, and they have a song called Scars, and it's a little bit older. I'll put a link in the show notes. The chorus says: "I'm thankful for the scars. Because without them, I wouldn't know your heart. And I know they'll always tell of who you are. So forever, I am thankful for your scars. 

The third hope that I want you to know is that God has a purpose for your pain. Draw near to him with your messy emotions. Don't push him away. I'm not saying it's easy. I'm not saying that we're not going to wrestle and live in this tension of fear and anger and sorrow and gratitude and joy. But in all these emotions, God wants to draw near to you in your pain and for you to tell him about them. Recently, I was going through a collection of papers, and Mother's Day mementos, and old cards that people had sent us in those early days of our son's diagnosis and in the hospital. As I was going through, I found one of those papers where when your kids are in school, and they fill out the Mother's Day, "All the things that you should know about my mom," They're really funny answers from your kids when they're younger, as in kindergarten or first grade. When my oldest son filled out this form, he declared that my favorite holiday was Valentine's Day because I like to eat candy. Another one of my children filled out that my favorite activity is sleeping, which was probably true, especially in those days, and it's still true. One of the things that stuck out to me as I was reading through all the cards that people sent to us during our son's first three tumultuous months of life was the impact and the encouragement that reach through those pages. There were notes from people, I don't even remember who they were, teachers that I had taught school with, some of them who are still friends today. 

I shed many tears from the cards of the people who are no longer with us and who have passed on. A few takeaways that I would like to share with you from these cards is be willing to open up and share your story. You never know who it's going to impact and how it can give someone else courage. Send the card is the second thing. If you're listening today, and you are not a special needs mom, and even if you are, send the card. You never know the encouragement that will reach through those pages, days, months, and decades later. Lastly, save the cards, save the emails, and save the texts. Have a file folder on your computer; they will help you remember where you were. They will remind you how faithful God is. They will give you courage and remind you that you are not alone. 

The last hope that I want you to know is that God will give you a new song to sing. In those verses in Psalms, it talks about how God brings us up out of the pit, and he gives us a new song to sing, a song of praise to our God, that many will see our stories and will also put their trust in the Lord. My prayer is that because of our story, because of writing our story down and listening to it through this podcast, you will also have a new song to sing, you will see how God is sustaining. He loves you. Be willing to let God write your story, even the painful parts, because he does a much better job than we do. Sometimes we want to cling to the old song, the song of what we wanted our life to look like, our expectations, and our plans. Yet God desires to give us something new and beautiful. God wants to give you a new song to sing, a new plan for your life, and a new path. One of the things that I found as I was going through those letters and cards was a letter from a friend who wrote this to me during that initial hospital stay, and it was actually on my birthday. That birthday was probably one of the worst birthdays that I've ever had in my life. She had already been a special needs mom at this point, and here I was four years later, walking through a similar journey. She spoke these words to me over 16 years ago. It struck me that these were also written for you. I'd like to close with these words. 

Since your child's arrival, I feel like we can understand a part of one another's lives that we couldn't grasp before. I know that our situations aren't exactly the same, and I hope I never come across that I know exactly what you're dealing with. But we, you and I, listener, share some of the same disappointments, dreams, and broken hearts. I would add emotions. The things that we experience in our life, I believe, are meant to help us grow spiritually but also to open up opportunities to minister to others. Because you are ______ (you fill in that blank), Whatever kind of mom you are, you can relate to other moms in the same situation or with similar emotions. Now that you have your child with special needs, God has opened up a new world of hurting people. They need so much encouragement and are hungry for hope. A lot of times, we don't want to take on this ministry because we don't want our kids to have the label of disabled or special needs children. 

To be truthful, it can also be quite draining. It can be hard to deal with other people's burdens when we have so many of our own. But I have found that being able to help someone in tough circumstances has given me purpose and meaning in our own situation. That has definitely been true about my journey through this podcast and writing the book. My prayer is that you will hold on to these hopes, that you will know that you're not alone and that God sees you. He has a purpose for your pain. He will guide your steps. We want to walk this journey alongside you. Lastly, I would just like to echo what Amy said. I love stories, and I would love to hear yours. You can send me an email at carrie@carriemholt.com or you can reach out to us through the Take Heart website. The links are in our show notes. Pray for God's blessings over you today. Remember to share your story with others, and remember to hold on to the hope that God gives. God bless you. 

There also links to anything we mentioned in the show notes of this episode. Thank you for joining us today.