Take Heart

How To Find Joy As a Special Needs Mom

• Amy J Brown, Carrie Holt and Sara Clime • Season 1 • Episode 26

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Connection is crucial for thriving and having JOY in this special needs journey, first with God, then through relationships with others. Carrie shares some practical tips on these types of connections, their importance, and a lovely story of how God orchestrates our friendships.

February 9, 2021

Timestamps & Key Topics:

  • 0:19-   Intro
  • 1:09-   Created for Connection
  • 3:48 -  Connection to Jesus 
  • 7:59 -  Friendship
  • 10:42- God Provides
  • 15:18- Rest for You
  • 17:22- Psalm 36
  • 18:22- Outro

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Welcome to Take Heart, where our goal is to give you hope, offer insight and encouragement, so you can flourish in your journey as a Special Needs Mom. Each week Sara, Amy, and Carrie will explore a theme, share inspiring stories, practical tips, and encouragement you can use every day. Using our combined experience of over 30 years of parenting children with special needs, our prayer is that you Take Heart, have courage to embrace each day. Be sure to check out our free download entitled “Tips on Finding Peace, Hope, and Gratefulness in the Hard Places of Being a Special Needs Mom.” You can find it at takeheartspecialmoms.com Thank you for being here today. 

Hi there, it's Carrie M. Holt today, and this month's theme is Connection. February, the month we often associate with love and relationships. After all, there’s Valentine's Day. Did Hallmark create that holiday? Probably not, but the focus for this month is about connection. The truth is that we were never meant to walk this life alone. When you read the book of Genesis, and see how God created things every day. Every day, he calls his creation perfectly good, yet when he creates Adam, he says it was not good for man to be alone, so he created Eve. God created us for connection.

As special needs mothers, we are certainly not meant to walk this journey alone either. During my pregnancy, our son was prenatally diagnosed with the most common permanently disabling birth defect in the United States. One would think that there would be all kinds of moms out there for me to connect with. Don’t get me wrong. There were, until our journey took us down a road less traveled. When Toby was 2 1/2 weeks of age, he went into respiratory failure, and we had to return to the hospital. Four days in, we learned all kinds of disturbing things: his vocal cords were paralyzed, his airway was collapsing, and he was aspirating milk into his lungs. Then we ended up in the pediatric intensive care unit, as our son spent the next 30 days fighting for his life. After several surgeries and treatments,  around the age of three month old, we brought home this medically fragile baby. But, now not only did he have Spina Bifida and all the things that went along with that, he had a tracheostomy tube to help him breathe. He was on a ventilator 24 hours a day 7 days a week, and he was attached to a feeding pump 20 hours a day. I felt like I no longer fit in with other mothers who had children with Spina Bifida. His being medical fragile was more rare, and I didn’t know very many moms who had this special package along with Spina Bifida. I knew that I had a choice, though. I could either just survive or thrive and find true joy in this journey. In order to do that I needed three different types of connection. When I was a little girl in Sunday school, I was often taught that the acronym: JOY, meant Jesus, Others, and You. I'm going to use that today to talk about connection.

First of all, the “J”. I knew that in order to thrive in my journey as a special needs mom, I deeply needed to be connected to Jesus. He has to be our source of strength, wisdom, and hope. During those days in the ICU, they were often extremely dark. Another friend that I have, we used to call it “ICU psychosis” because you didn’t know whether it was day or whether it was night time. I honestly didn’t have a lot of time to study my Bible in depth, but I would go back to the familiar scriptures and the reminders of God’s character. Even though our son’s future looked dim at the time, God’s character had not changed. Number one, I knew that I was not alone. He was with me, and He is with you. He will never leave you or forsake you. I think it’s also important to go back and connect with the names of God. If you haven’t ever done a study on the names of God, I would encourage you to do that. I began to rely on Jehovah-Jireh, the Lord who provides because we needed provision for things like care for our two toddler boys at home with us. Jehovah Rapha, the Lord our healer. There were many issues that came up that Toby needed to be healed from during that time. El Roi, the God who sees me. I knew during that time that God saw what we were going through, and he wasn’t leaving us alone in that situation. I love this quote by Emily P Freeman in her book Simply Tuesday. She says, “I want to remember how God set the longing for his kingdom in my heart and that when I settle for less than him, I’ll always be homesick (53).” 

Our world and the reality of raising special needs children is never going to measure up to what we want, because this world is broken, and our hearts long for the peace and the perfection of heaven, but we can connect with our Savior and come a little bit closer to that reality. Now you might be thinking, Carrie, I have very little time to connect with God on a daily basis. I just want to encourage you that we all have different seasons in our lives. During the storms, you might not have time to read and pray, but to focus on digging the roots of your heart deep into the truths of scripture and God’s character during the times of peace in your life. I have never lived in the south, but I can imagine that those people that live in the areas where there are hurricanes don’t wait until the hurricane comes to put storm windows in their houses, and the storm shutters on. They are already doing that during the sunshine. I also want to encourage you that connection with God is not a to do list, but a relationship. As a recovering perfectionist, I used to think that I had to get up at 5:30 a.m. every day and spend hours in the word to be the good “Christian girl.” Certainly there are seasons for that, but I’ve also learned that relationship with God is also about meditating on a scripture. Writing one down on a notecard and carrying it with me in my purse. Listening to the Bible on a podcast, or connecting with an online or in person Bible study. And also praying, no matter what. I think I’ve said this before, and I know it’s important to spend time on our knees, but it’s also important to have an ongoing conversation with the Lord throughout your day. 

I also want to acknowledge and just be honest with you, there have been times when Toby has been in the hospital that I honestly felt like I couldn't pray at all. I felt like if I did spend a lot of time in prayer, the floodgates would open, and I would be a sobbing mess. I wouldn’t be able to think straight, make decisions, or even hold it together. I don’t know if you have felt like that, but I want you to know that that is okay too. This is when you have your prayer warriors praying for you on your behalf. Just know that God knows this, and he is with you. If you can only utter one line like, “Jesus, be with me,” then utter that one line.

Another important connection for thriving instead of just surviving in this journey is connecting with other people. This is especially important with your spouse if you have one, your other children, and your child with special needs. Today, I want to talk a little bit about friend connections. First of all, I want to admit there is a lot of competition in the world between moms, especially in how we parent. We all do things differently. I think we need to admit that this competition carries over into special needs motherhood too. Sometimes I have had the thought: well you don't understand what I'm going through because my child is worse off than yours or they have a different diagnosis. I have struggled with that mindset, and God has been teaching me this phrase. I believe I learned it from Emily P. Freeman. She says, “Choose connection over competition.” I think it’s so important when you meet someone new, or run into them at the grocery store, or even online - in our online interactions that we find ways to connect, to ask questions, offer support, instead of just giving our opinion, and to find out what we have in common. 

I also want you to know that God will give you exactly what you need whether when we compare our circumstances to others, we judge them as big or small. Early on in my motherhood journey, I had two little boys. This was before Toby, and they were born less than 19 months apart. As you can imagine as a young mom, I was struggling with diapers, sleeping, and potty training, temper tantrums, and teaching our boys not to jump on the couch. During that time we had some friends who went through a pretty horrible birth experience, and their son almost didn't make it. I remember thinking what do I have to complain about?  I can’t talk to God about my lack of sleep, and diapers, and potty training when this family is over there dealing with something pretty horrific. It was during this time that the still small voice of the Holy Spirit reminded me that it does not matter if we think that our circumstances are large or small, God is God over all of it. He  wants to provide you with the strength, and wisdom, patience, and love  whether it's a big hospital stay or you’re dealing with medications on a daily basis, the behavior meltdowns or school online. He wants to be all you need through all of it. I want to encourage you to connect with others to get the support that you need.

Now, maybe you’re new to being a special needs mom, or you live in a small town, and you’re walking this journey alone. Can I just encourage you that God cares about that too? He wants to give you someone to walk this journey with. I have an amazing God story that I would love to share today. While I was in college, I will never forget being in chapel one day and our president was speaking. He reminded us it is wise not to assume that just because we were at a Christian College, we were going to have Christian friends. We had to pray for the right ones. So, pray for God to bring you the friends and support you need. He may already be orchestrating this and you don’t even know. This is the story I would like to tell you. Back when my husband and I were engaged, we attended a church and met this couple named Carl and Erika. They were also dating. What’s really interesting about this story is that I knew Erika’s mom because she and I worked together at the college bookstore. Her mom was a staff worker, and I was a college worker. The four of us became fast friends, and one of our favorite things to do was to watch the show, Amazing Race. Do you remember that show? I think it might still be on. I’m not even sure. We were married about 8 months apart. A few years in, we began to dream of sharing pregnancy and motherhood together. Within a few months, God answered those prayers. We became pregnant three weeks apart. I was due first in July, and she was due in August. My due date came and went, and then 11 days passed. AS you can imagine, I got tired of the questions, “When are you going to have that baby?” The day before I was scheduled to be induced, Erika called me to let me know that she was going in, that day to be induced. She was going to have her baby a week early, and here I was almost two weeks late. Of course I went through the, “It's not fair; she can't have her baby before me.” I can tend to be a little competitive, I’ll admit it. Then, our boys were born 16 hours apart in the same hospital. I won't know for sure until I get to heaven, because I really want to ask God this question. I am almost positive that the minute her son was born on Thursday night, my contractions started because three hours later I was at the hospital. If that wasn’t enough of God orchestrating this amazing plan of motherhood together, we would both become special needs moms together. Three months later her son went into respiratory failure with a paralyzed diaphragm. Three months after that, he came home with a tracheostomy, a ventilator, and a feeding tube. Fast forward three and a half years later, and we bring our son, Toby home from the hospital with the same things. The extra medical complications Toby had are pretty rare for his diagnosis, there are some. Erika’s son’s diagnosis was one of 50 or 60 in the world. Was that a coincidence? I don't think so. God was orchestrating a plan, way back when we were in college, to intersect our lives and for us to have similar journeys. I do want to mention this here. Even though we had each other, we both felt alone because we didn’t connect with other parents whose children had the same diagnosis, so you know what we decided to do? We started our own support group. One for mothers of children with medically complex children. We would gather once a month, share stories, advice, and above all, we would share connection and support. 

Maybe you are new to this journey, you live in a rural area, or the thought of starting a support group overwhelms you. The biggest thing I want to encourage you with is to pray first. God knows what you need, and He cares about every aspect of your life. He will provide it. I also want to encourage you to think creatively about connection. Maybe it’s starting a FB group, or starting one for your child’s rare diagnosis, or maybe you can find connection through your local children’s hospital. Another way I have found connection is our hospital is fairly unique in that it really encourages parents involvement in hospital committees. They want parent feedback to make the hospital care better for other patients. As a result of this, I have met many other moms. If you’re interested in learning more about this type of care, there’s a website that is for this: the Institute for Patient and Family Centered Care. It’s a great place to start. I will leave a link in the show notes, or you can also reach out to me to ask a question. 

 Lastly, I want to briefly talk about the last part of the JOY - and that is You. Next month we are going to go into more depth about self-care, but I would just like to share two things. One is that your connection and relationship with Jesus is first and foremost so important in taking care of yourself. The Bible says the joy of the Lord is our strength. Secondly, take some time to find out what helps you thrive and what drains you of energy. Now, first of all you could be thinking, my child drains me of energy, which that is true. Our children do. What are some things outside of your family, outside of your role of mom, wife, daughter, or aunt that help you to thrive? It is important to take some time for yourself, to find the respite care that you need, maybe it’s a nurse, or an aid, or a trusted friend or relative to care for your child so you can leave the house and maybe go to the grocery store alone. I can tell you that through the years of my involvement in the hospital, every time I would come home from a hospital meeting, I was walking on air. It gave me energy, and also helped to give me a sense of purpose, that our suffering was not for nothing. I could use it to help others. I know so many special needs moms who are out there who have started fundraising groups, support groups, all different kinds of ministries, and support. Now, maybe that’s not for you, but just remember, you need time for rest. Jesus was a great example for us. I know in the book of Mark, he went away many times to pray, rest, and spend time with his father. I also want you to know you might be in a current season where you are not able to do any of that. Please just remember this: it's wise not to assume that your current season will always be this way. Don’t give up. God will provide. 

I want to leave you with this prayer of blessing that comes from Psalm 36. Lately I’ve been studying the phrase the steadfast love of the Lord. I want you to know that He loves you above what you can imagine.

“Your steadfast love, O Lord, extends to the heavens, your faithfulness to the clouds. Your righteousness is like the mountains of God; your judgments are like the great deep; man and beats you save, O LORD. 

How precious is your steadfast love, O God! The children of mankind take refuge in the shadow of your wings. They feast on the abundance of your house, and you give them drink from the river of your delights. For with you is the fountain of life; in your light do we see light.”

Thank you for joining us this week on Take Heart. If you are loving our podcast, could you do us a favor and leave a review on whatever platform you’re using to listen to our podcast?  You can follow us on Instagram or Facebook @Takeheartspecialmom. If you have any questions or comments, or would like to share your story with us, follow the links in our show notes. We love hearing from our listeners. Listen in next Tuesday as Sara shares her thoughts about connection.