Eight Practices For Processing Grief In Special Needs Parenting

Grief is an ongoing part of the special needs parenting journey. Today, Carrie reminds us that it’s important not to rank grief, what grief looks like, and how God is sovereign through all types of loss. Her eight practices for processing grief as a special needs parent will greatly encourage you. 

April 13, 2021

 Timestamps & Key Topics:

• 0:20-     Intro
• 1:05-     Grieving Cycle
• 3:14-     Personal Story
• 6:01-     Grief Observations
• 7:30-     Four Practices 
• 11:16-   Four More Practices
• 14:07-   Being Kind to Yourself
• 16:01-   God of all Comfort
• 18:24-   Blessing
• 19:30-   Outro

Episode Links & Resources

• Extraordinary Kids: Nurturing and Championing Your Child With Special Needs by Cheri Fuller & Louise Tucker Jones
• The Life We Never Expected by Andrew and Rachel Wilson
• Your Wounds & the Path to Healing, Ep. 13. by Adam Young: Podcast The Place We Find Ourselves
• Scripture Mentioned: Psalm 62:8, Job 42:7, II Corinthians 1:3-4, Psalm 16:1, 5-6, 8-11.

If you enjoyed our podcast, please...

• Carrie’s Resource Eight Processes for Practicing Grief
• Subscribe to our newsletter on the Take Heart Website
• Get our free resource on finding Gratitude, Peace, and Hope
• Review and like us on Apple Podcasts 
• Follow us on Instagram @takeheartspecialmoms
• Find Amy at www.amyjbrown.com/  or on Instagram @amyjbrown_writer
• Find Carrie at www.carriemholt.com or on Instagram @carriemholt
• Find Sara at www.saraclime.com or on Instagram @saraclime

Transcript

(0:20)  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 an inspiring story, practical tips, and encouragement you can use every day. Thank you for joining us today.

(1:05) Hi there. It’s Carrie M. Holt today, and this month we are exploring the topic of grief in the special needs journey. Before I became a special needs mom, I really had no idea how closely associated grief walks with special needs motherhood. I remember reading about this grieving cycle in a book, very early on in our journey, entitled Extraordinary Kids. She talks about the different stages of grief when a family receives a new diagnosis for their baby or a child. I could resonate with what the authors said. They had interviewed a nurse, and she said, “You have to grieve for the child you were expecting before you can accept the child you have…Some stages of grief that you might experience are:

• Denial: I can’t believe this is happening to me.
• Anxiety: How can I possibly handle this?
• Fear: What will happen to my child and my family?
• Guilt: What did I do to cause this?
• Depression: My hopes and dreams seem to be lost forever.
• Anger: This is not fair!
• Acceptance: I don’t like what has happened.  I don’t understand why it has happened.  I don’t know how I’m going to handle this.  But God knows, and I can trust Him.”

I know that these might not be backed up by clinical research, but I do believe they are a cycle that we are continually living in. They’re also not definitive stages. Sometimes we experience one or more of these at once. They aren’t linear either – you can bounce back and forth from one to another and back again.  This is not grief over the loss of our child, but the loss of a dream, and having to adjust to new expectations and life experiences. These might be: doctor appointments, diet concerns, therapy, surgeries, medical procedures, behavioral plans, IEP’s, mental health issues, not to mention fighting with insurance, state funding, paperwork, etc. These are just things that we as special needs moms have to deal with in the world of special needs.

(3:14) Now grief has been something that I enjoy writing about, and I know that sounds kind of strange. But I really had an epiphany when our son was about four or five years old. I had a light bulb moment after an unexpected hospital stay. I think we had to take an ambulance to the hospital this time, and it was completely unexpected. During that hospital stay, which I think lasted about five days, I had to miss our second child’s field trip at school, and life was still moving forward. Our daughter was a toddler at the time, and our school year was coming to a close. So we had four kids about seven and under. My sister’s bridal shower was also coming up and I really didn’t have time to breathe after that hospital stay, let alone process what was going on until something set me off. In this case it was two board books that my daughter had ruined. I think I’ve mentioned this in another podcast, but I ended up at the library, and was being honest telling the librarian about these books. Then she told me, with no mercy, or caring, or understanding, how much it was going to cost to replace those board books.  They are super expensive by the way. I kind of went off on her. I told her she didn’t understand what I was going through. She wasn’t having any grace. I really could have just put those books back in the library return bin, and they would have never known that it was us who had returned them, but I was being honest. I think I told her I would never return to that library again. On the drive home after that, it finally dawned on me that I was grieving. I was grieving the loss of time with our other kids, the fact that I had missed our second son’s field trip. I was angry because the hospital stay seemed pointless. When we left that hospital stay, we went to an outpatient appointment. During that appointment, they scheduled yet another surgery for our son, and that was adding it to an already long list. As special needs mothers, the marching band of time moves forward at a frenetic pace, and we feel like we have to keep time with it. This sometimes does not allow time or space to grieve our losses. After that stay, I do feel like God gave me a gift. It was this understanding “Grief is always going to be a part of your journey.” I want to tell you this. Grief is always going to be a part of your journey. Expect it, and don’t be surprised when it comes. I will be with you in it (God speaking). After that epiphany, it just helped me to understand what to expect. I’m one of those types of people that I really have to know what to expect going into situations because I don’t like feeling blindsided.

(6:01) Here are a few observations that I’ve learned through the fourteen years of being a special needs mom. First of all, grief does always look like sadness. It can show up through many types of emotions such as anger, impatience, depression, anxiety, and weariness. We all grieve when we experience loss, whether they feel like big losses or smaller ones. I think in our western culture, we also tend to rank grief, which can be dangerous. We also might even feel belittled by others that in our minds have experienced the ultimate grief, which is the loss of their child to death. We might feel like we can’t acknowledge our own grief over what we deem as little losses. This is what I’m talking about with ranking grief. I want you to know that your hard situation is still your hard situation even if it looks smaller compared to someone else’s. More importantly God is still God, and He is still all you need if you’ve lost a child to death, you’ve lost your child to the dream of having a healthy child, you’ve lost time, your child has lost function, you’ve lost memories, you’ve lost friends, you’ve lost a marriage. You fill in the blank. He is still near. The Comforter can still comfort you whether you believe your losses are big or small. Please don’t rank your grief, and know that God is still God in all of it.

(7:30) So what do we do with grief? So on my website, I have a free download that is entitled Eight Practices for Processing Grief, and I want to walk through these today, briefly. I will put a link in the show notes so you can download this free resource.

1. Acknowledge it -  Sometimes changing our expectations is half the battle. So I think we need to acknowledge, expect and accept that grief is a part of the journey. That way when these emotions come up, you can say, “Oh, what has happened lately?” You can ask yourself what has been going on the last few weeks or months even that I need to grieve or that could be sparking these emotions. 

2.  Name it. Sometimes when we encounter these emotions such as sadness, anger, or weariness, we may not really know what is initiating our grief. This is when we need to take the time to pause and reflect. I think it’s even important to keep a journal, whether it’s an audio journal, or a written journal, even a video diary. For me it’s sometimes in the van driving, when I’m by myself. A worship song will come on and all of a sudden the tears are flowing, and I have no understanding of why I’m crying. It was during that drive in the car that I realized that I had let our 2nd son down. When those emotions are bubbling up inside of you, ask yourself a few questions: What has happened recently? What losses do I need to grieve? Why am I sad? Write them down and name your grief. 

3. Lament it.  This is probably the most important and that is that you need to lament your loss.  I know I’ve quoted this book before, but it’s so extremely powerful that I can’t help but quote it again in this episode. Andrew Wilson in his book The Life We Never Expected,  says “We need to learn - especially those of us from Western cultures where mourning is so understated - how to grieve in a way that gives due weight to what has happened to us. Otherwise, in our attempt to cope with the situation, we can trivialize the pain and so fail to deal with it properly.” So after you have acknowledged that grief is a part of your journey, you’ve named it, you also need to lament it. Psalm 62:8 says, “Pour out your heart to him.” Don’t be afraid to grieve and pour out your heart to the Lord. I think Job was the perfect example of this. In his pain, he poured out his heart to the Lord. Honestly, when I read through the book of Job, when I was pregnant with our son, and after we found out about his special needs. I thought, I cannot believe that he was able to talk to God like that. There are even verses about him wishing that he had never been born. Yet God was the one who told Eliphaz that Job was the only one who had spoken rightly about him. He says in Job 42:7, “God’s anger burned at Eliphaz because “you have not spoken of me what is right, as my servant Job has.”  So, I’m not quite sure, but I think this is because Job was honest with God about how he felt. He took his anger, his worry, his anxiety, his losses to the Lord. He didn’t hold anything back. You don’t have to filter your emotions and what you say before you take it to the Lord in prayer. Take it to him, lament it, and be honest with him. Some ideas for this are through journaling and just singing and worshiping. Those are some of the ways I have been able to grieve my losses in our journey.

(11:16) 4. Speak truth about it. Unfortunately when we are grieving, that’s when the doubts, fears, and anxiety crowd in. You must learn to speak truth against the feelings of hopelessness that can invade you during grief. It might be easy to assume that you are always going to feel this way, that it’s the end of the world and life is never going to change. It might be easy to doubt that God is faithful, that he doesn’t see your grief, that he doesn’t see your needs. So speak the truth of scripture against it. The Psalms are a great place to start. Identify the lies that you’re believing in your grief. Remind yourself of who God is. Remind yourself of His character and what He has already carried you through. I believe it is so important to set up those stones of remembrance just like Israel, so you remember his faithfulness. So speak truth about it when you’re in the middle of grieving. 

5. Choose Gratefulness within it. Now, it might seem like gratefulness and grief are opposites, but actually they aren’t. Jesus was the perfect example of this. The night before he went to the cross he began to be “sorrowful and troubled” as Matthew says. He prayed, “My Father, if it be possible, let this cup pass from me; nevertheless, not as I will, but as you will.” We know he grieved so hard that his sweat was like drops of blood. He knew what he was going to face, and yet He said to His father, “not as I will, but as you will.” Your grief and gratefulness can be held together in the same hands. You can be grieving your situation, but also be looking at what you can be thankful for in the middle of that situation. That will strengthen your faith. 

6. Speak/Share your story alongside it. It’s so important to share your story with others. I know that it can be very difficult to go back and process the hard and traumatic places of the things that you’ve experienced as a special needs mom. So I want to admit here that I am a verbal processor, if you haven’t already figured that out. So this comes fairly easy to me, so maybe it won’t to you. Sometimes I will admit that I will over share with someone. I want to give all the little details because I love story, and I’m wired for story. But I’ve learned from listening to Adam Young’s podcast The Place we Find Ourselves that when we share our stories with others you’re actually connecting the right and left hemispheres of your brain through the retelling of your story and when you’re experiencing your emotions. This leads to healing. Then there’s also this connection that occurs between yourself and who you are sharing your story with. This leads to empathy and compassion. People can relate to pain even if they haven’t walked in your shoes. So when you’re ready, I want you to share your story alongside your grief.

(14:07) 7. Show kindness to yourself through it. This is so important, ladies. Be aware of your body and your triggers, and be kind to yourself. Just a few weeks ago, we were told that our son is going to need a spinal fusion surgery this spring. Honestly, it was news that came completely out of left field. I wasn’t expecting it for several more years. I spent the day reeling in grief. I thought that I had been down this road long enough, that this unexpected news wouldn't send me into the state of emotions that I was experiencing. The problem is, if you try to shut off all those emotions, you put up an amour, you turn into a cynic. You always expect bad things to happen. I really had to learn to be kind to myself this day - so I took a bath. Epsom salt baths are one of my practices of self-care, and one of the ways I’ve learned to be kind to myself. If I’ve had a hard day, and I’m crying a lot, I’ve learned to drink a lot of water. I’ve also come to be aware that after every hospital stay that Toby has, when I am able to finally let my guard down, I’m going to grieve. I will crash at some point. It might be a couple weeks later, it might be six months later, but I know it’s going to come. So when I begin to experience those emotions: the anger, weariness, the trauma, and the sadness, I’ve learned to show kindness to myself. If you haven’t listened to the podcasts on self-care, please go back and do that. Be aware of dates, anniversary dates of diagnosis or hospital stays. Maybe it was the day you had to call an ambulance for your child, or maybe it was the day your child got kicked out of school because of behavior. Be kind to yourself, and be aware of those triggers and your processing of grief.

(16:01) The last one comes at the end of grief when we’ve had some healing and through processing grief. Use your grief to comfort others because of it. In II Corinthians it says, “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.” So, I’ve learned in my many years of walking with the Lord that when the Bible repeats a word it’s really important. The word comfort is repeated a lot in those scriptures. Basically it’s this idea that when you have been comforted by God, eventually you can take that mercy and comfort and bestow it on others. Sometimes that might be through sharing your story, being a listening ear. I have not done the research, but can you imagine how many non profit companies are out there as a result of someone’s pain they’ve walked through? I would say most of them are. When our special needs son was barely 2, I began to volunteer at our local children’s hospital. One of the things I do there is a group called Family as Faculty. We get to share our stories with new employees, nursing students, residents about what Family Centered Care looked like from the family’s perspective. It has helped me to grieve, and it has also helped me to find meaning and purpose in our pain and teaching moments. I’ve had to look at the bad experiences that we’ve had at the hospital, and been forced to look at them from the perspective of how that could have been made better. It has also led to me feeling purpose and helping others to get better care at our hospital. I’ve been doing this 12 years, and I have found so much meaning in it. How many times do you get a phone call? Someone at church might say, “Hey, I know this mom, who is working through a similar journey, and she’s just in the early stages.” Then you can walk alongside that mom and be a mentor and a comfort to them. So those are some of the eight practices for processing grief, just things I’ve learned along our walk and our journey.  

(18:24) I would love to leave you with these comforting words for your grief from Psalm 16. 

“Preserve me, O God, for in you I take refuge. I say to the LORD, “You are my Lord; I have no good apart from you.” The LORD is my chosen portion and my cup; you hold my lot. The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance. I have set the LORD always before me; because he is at my right hand, I shall not be shaken. Therefore my heart is glad, and my whole being rejoices; my flesh also dwells secure. For you will not abandon my soul to Sheol, or let your holy one see corruption. You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore.” Thanks be to the Lord.

(19:30) Thank you for joining us this week on Take Heart. If you are loving our podcast, could you please do us a favor and leave us a review on whatever platform you listen to podcasts on. Don’t forget about my download this month. Eight Practices for Processing Grief. You can find that at www.carriemholt.com. You can also follow Take Heart on Instagram or Facebook @Takeheartspecialmom. If you have any questions or comments, or would like to share your story with us, please follow the link in our show notes, we love hearing from our listeners, and we love hearing your stories. Listen in next week as Sara shares her thoughts on grief and the special needs mom.