Take Heart

The Heavy Burdens We Hold

• Amy J Brown, Carrie Holt and Sara Clime • Season 1 • Episode 12

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As special needs moms, we hold a heavy cup of our children’s diagnosis and special needs. The daily grind can be so difficult. How do we shift our mind-set about this cup? Listen in to find out.

October 27, 2020

Key Topics/Time Stamps:

  • 0:20-  Intro
  • 1:00-  Holding the Cup
  • 3:07-  Anticipatory Stress
  • 4:53-  The Balance
  • 6:42-  Our Podium
  • 9:17-  Grieving Cycle
  • 15:11- Healing Comfort
  • 16:42- Pour out the Cup
  • 21:07- Don’t Borrow Trouble
  • 23:54- Closing Prayer
  • 24:37- Outro

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Welcome to Take Heart, where our goal is to give you hope, and offer insight and encouragement, so you can flourish in your journey as a Special Needs Mom. Each week Amy, Carrie, and Sara will explore a theme, and share an inspiring story, a practical tip, and an encouraging blessing using our combined experience of over 30 years of parenting children with special needs. Thank you for joining us today.

Sara: Welcome everyone. I'm Sara, and I'm here with Carrie and Amy and this month we are talking about mind-set shift. So when we first brought up this topic, the first thing that came to me was this metaphor from this book. It's called Getting Back to Happy, and the author is Mark Chernoff. In this book, he talks about the story and it is a psychology professor that stood on stage and was teaching a lesson to a class, which she called a vital lesson on the power of perspective and mindset. The professor asked, “How heavy is this glass of water I'm holding?  The story goes that all the students started shouting out answers ranging from a couple of ounces to a couple of pounds. After a few moments of fielding the answers and nodding her head, the professor replied, “From my perspective the absolute weight of this glass is irrelevant. It all depends on how long I hold it. If I hold it for a minute or two; it's fairly light. If I hold it for an hour straight, its weight might make my arm ache. If I hold it for a day straight, my arm will likely cramp up and feel completely numb and paralyzed.” She goes on to explain that. Then she said, “The longer I hold it, the heavier it becomes to me.” So as much of the students nodded their heads in agreement. She continued, “Your words and frustrations, disappointments and stressful thoughts are very much like this glass of water. If you think about them for a little while, nothing drastic happens. Think about them a bit longer and you begin to feel noticeable pain. Think about them all day long, and you will feel completely numb and paralyzed and incapable of doing anything else until you drop them.” It goes on to say in this book that the professor's words should be a wake-up call. If you've been struggling to cope with the weight of what's on your mind it's a strong sign that it's time to put that glass down. Amy, did you ever experience a time when you felt the weight of the glass, and you had to put the glass down?

Amy: Like all the time. 

Sara: You wanted to throw the glass?  

Amy: Yes. I would say that one of my really special gifts is that I can carry the glass a long time and over worry and overthink it. I think when it comes to having children with special needs in my situation kids with hidden disabilities the weight isn't necessarily the daily it’s the fear of the future. What are we going to do on spring break? What are we going to do on Christmas break? How am I going to get through the summer? What if we don't get into this doctor? I call that anticipatory stress because I can go through all the things on my “anticipatory stress list”, and get myself really exhausted and stressed and tired. Sometimes, I'll just write down all the things I'm worried about and just put, “Not mine to carry today,” because it will totally wear me down. There's so much fear of the future, and I think all of us would say we have a fear of the future a little bit. That's what I would say is probably the main thing that I carry that gets heavy which is so silly, because I can't do anything about it. There's not one thing I can do about the future. I just have to be faithful to what I need to do today. 

Sara: Carrie, kind of the same thing, do you ever feel that you hold that glass and it gets heavier the longer you hold it or do you even notice you carry the glass anymore? 

Carrie: Yes, I definitely think that there are moments when the glass feels really heavy. I mean because one thing as Special Needs Mom is the glass is always in our hand. Our kids are oftentimes always going to have these special needs and disabilities until they’re with Jesus. That reality can be really difficult. For me it's trying to balance the hope with reality. For instance just in the last month our son has been in the hospital three times. You're just sort of waiting for the shoe to drop and that can be really hard because on one hand I'm trying to protect my mind and the minds of my other children and have hope that this certain medical event is over. We don't have to deal with it again. In reality, I know that this could come up again. He might end up in the hospital again. Sometimes I feel like I'm battling cynicism a little bit, or just being very practical that this isn't over. When I find myself doing that I just try to take it to the Lord in prayer. Like you said, Amy, the future is unknown. I can't know tomorrow and like Matthew says, “Take no thought for tomorrow,” and just focus on today. Be grateful that today, we are home. We are not in the hospital, and this has been a gift for me today; so I'm going to rejoice in this gift.

Sara: You both touched on that the future is unknown. I think sometimes is the hardest because we're okay with the glass. We’re okay with knowing we have to hold it. We're okay that our arms are going to cramp. We’re used to that. We're okay with that but I feel like sometimes I don't even know what's in the glass. Somebody's adding to the glass. I swear somebody is. I think that's the point, the longer we hold on to it, it becomes heavier. Eventually if I don't set that glass down even for a minute and sometimes you can't set it down, and I get that. But you can also ask for help holding it. I always have this visual of this professor up there that as she's talking did she hold the glass the whole time, or did you put it on the podium? Maybe I need a podium. All special needs moms need our little glass podium so we can keep it close to us, but we just have to set it down just for a minute, just so we can kind of stretch our arms out. For me, that podium becomes my relationship with God. I don't have to give up the glass; I just know He's holding it for me. It's still mine, but He's just holding it. I know that there's been times in my past that I’ve not let that glass down when I know it's getting ready to fall I need to. Is there ever a time that you can think of offhand that you've let the glass slip, or you knew you probably should have put it down? Mine I can think of and this is not even really major, but I absolutely lost it in the car pick-up line with this dad. You would have thought I had lost my ever-loving mind. It had nothing to do with what was in the glass, but quite frankly he didn't like my glass. I snapped, and it was just over something so silly. I think that if I would have just not let it build, not let it become heavier than what it truly is, I wouldn't have gone that direction that was so contrary to my personality. Is there another time that you can think of?

Carrie: Yes, I can actually. I can remember when Toby was 5 and we had had like an unexpected hospital stay and then it was also the end-of-the-year activities with all of my kids in school. I had to share that load with some family who came in to attend end-of-the-year parties and field day and that kind of thing. At the time I had four kids who were seven and under. Our daughter was a toddler at the time, and she had ruined two library books. Board books, which are supposed to hold up to toddlers! I went to the library and instead of just sliding them into the slot and driving away like I was really tempted to do. I went in, and I was honest, and I showed them the books. The lady had no grace, no compassion whatsoever. She related they're going to be this much money. Do you know how expensive library binding is on books? It’s really expensive. I lost it on her. I went off and was not yelling because that’s not who I am. Well, I yell at my kids sometimes, but it's not usually in my nature to yell at a stranger. I said, “Do you know what I've been dealing with this week? I'm never coming back to this library again. I have not. Thankfully we live in a city where there's lots of different branches to the libraries, so I didn't have to darken their door again. You know one thing that God just helped me remember later is that we’re grieving. In the middle of crisis situations and in the middle of trauma, we have to hold it together. We have to be strong. We have to think clearly. We have to make choices and decisions that sometimes feel like they’re life changing. Then, my son is watching me, and I feel like if I cry and fall apart, he's going to cry and fall apart. So, I have to hold it together. Then the grief comes in waves later. Honestly, being aware that I'm living in that grieving cycle with our son and that it's going to come again in another situation, another “library: situation is going to come along again and set me off. It has helped me to know what to expect on this journey. I feel like God was very gracious and kind of revealing that to me.

Sara: So I find it so interesting, Carrie, when you were talking about just knowing that it's emotional, and knowing that the emotions are going to come. When we talk about a mindset shift; it's not a mindset change. We know that the problems are going to come, the grieving is going to come. We know that we're in that state of grieving. Amy, just like you with your children with hidden disabilities there's a cycle of grieving that I think is just cyclical. You just keep going through it, but how do you change your mindset to not drown in that cycle of grief? How do you change your mindset to go from I'm going to carry the glass, I'm never going to put it down, and I don't care what people say. I'm only going to focus on the glass to giving that to God or whatever that mindset shift is for you?

Amy: Well, I think first of all, we don't know what to do with grief. I was actually talking to a Special Needs Mom that has a severely disabled child, and she said, “I'm grieving but people don't acknowledge that. They say she's still alive. Why are you grieving?” I don't think we know what to do with grief. In our minds, and in society's mind; grief is death. So, what Carrie said is just recognizing I have grief that I will never probably have this side of heaven, a typical mother-child relationship with my kids with attachment disorder. I've had to grieve that our family doesn't get to do some things because of this. One of the things I was thinking about when Carrie was talking is when you hold the cup and it's filled with grief, acknowledging the cup is what we need to do. When it's filled with being cynical, and I think that's the word Carrie used. I was thinking about that as she was saying that, that sometimes you hold the cup and it's filled with cynicism. You’re thinking this is going to be terrible, this whole situation is going to be a pain. This thing I'm going into someone is going to judge me or whatever. That is a toxic thing to hold. I think grief is something we can pour out and give to God. My sister died at 37 and we had significant grief. One of things I learned about grief is it is a hole in the floor that you fall into and fall into, but eventually you'll get used to the hole being there and kind of walk around it. If we can get this idea that with grief we can give it to God, and then it's just going to keep going. It's not always going to be terrible. It's going to go up and down in waves. It takes the scariness or the mystery out of it. If that’s the right way to say it. It's just a part of your life. There’s so many Psalms that show grief and in some ways naming the grief and getting rid of cynicism is a mindset shift that helps you cope. It doesn’t mean you're not sad, but it's a way to hold it, so it's not so heavy. Does that make sense?

Carrie: I think through grieving there's healing. When we can name, talk about, share, cry out to God about what we're grieving through and that emotions are going to come after hard things, then it is a first step to setting that cup on the podium, setting that cup in the arms of Jesus and saying I come to you with my grief. Here it is. I know that you're going to comfort me in this. I know you know how hard this is because you lived on earth and you lived. His friend Lazarus died. Even though He knew he was going to be raised from the dead, He still wept and that to me is just very comforting. 

Amy: I think too, if I can say one of the things that is a little bit frustrating in the Christian culture is this idea that we have to put on a happy face about everything. That's really hard. People will say and I’ve shared this before, “Well ya know, where was God's miracles? I can't wait to see how God is going to work a miracle here? Sometimes there's not a miracle that's worked. It doesn't make me love God less or less faithful. It just is what it is. I think in the Christian world people are really uncomfortable with that. That's probably why we get some of the comments we do. But I do think what you said, Carrie, is just being able to grieve and knowing you're going to be comforted. That's where comfort comes, not from other people, yet other people can; that's where our true comfort comes from.

Sara: I love how you said, Amy, when you said that you could pour out the grief. There are so many things as a Special Needs Mom that are just put in our cup. We don't necessarily want it. It's not like we ordered it, but it's there nonetheless. There are so many things that you can pour out and give to Jesus. He's not only ready for it, he wants it. That's what He’s there for, that's what He wants from us. He wants that relationship. Like you said it's not going to be that the bad isn’t going to happen. It is. You were talking about how people will say they can't wait to see the miracle, or they can't wait to see what you know God does. There’s times where I think we might not see that with our human eyes. We might not see that. I've had people before say,  “You know I pray for a miracle everyday. I believe that God is going to heal him.” Mostly it's from Christians. I completely appreciate the sentiment, and I don't believe that it's cynicism on my part. I believe He could. I just don't know if that's His plan. I have to be ready that if His plan isn't for a perfect complete healing this side of Heaven, I need to do what I can to accept that or at least I feel be prepared for that, not that you could ever be prepared for it. I think that's where the mindset shift is. I said in my podcast episode last week the bad is going to happen. People just think if you're a happy person then you're just like that by nature. It's a choice. And every morning I wake up I think I'm not going to ram the guy in the car pick-up line. I’m not going to do it.  I’m going to wave, and I’m going to do a full hand wave. That's what I'm going to do.

Amy: Carrie’s not going to lose it at the library today.

Sara: Carrie’s like, ‘I’m going to check it out, but I’m not going to turn it back in.” It’s okay. I think you’re right, there’s such a perception in the Christian Community especially that if you're a positive person, you're just happy all the time. What makes us positive is we are going to be okay today. We have God today. Whatever comes we're going to be okay, and I think that's the true mindset shift.

Carrie: May I add too, we had a prenatal diagnosis. I went back and read the book of Job. At the time, I had this sort of glorified version of his story in my head. Job was a man. He followed God. He went through a bunch of trials. He survived, and God blessed him. When you read the book of Job, it is a lot of heartache and pain. There are times when I think, “Wow, he  got away with talking to God like that.” He cried out. There was anguish. There was pain. One thing I learned is that I can be honest to God about my pain. I can be honest to him about what is in my cup and that this is hard.  He says, “I know because I took on the sins of the world. I came down to earth.”  He is the high priest that can sympathize with us in our weaknesses. It really did help to change my perspective that I can grieve and mourn, and that is okay. Actually it's necessary to be able to choose joy in these hard times. 

Sara: What about you, Amy, do you have anything that you would like to follow up on? Do you ever add to your glass?

Amy: Oh yeah, all the time. I guess I would just add that one of the things that I think helps me, and we've kind of touched on this is just the daily living of not borrowing trouble. Just saying, “Today, here's what it is. Here's the beauty of it. Here’s the grace of the day. Here's the hard. It is what it is and handing that to God.” That is a mindset shift that has taken me years because I look at the future like I'm scanning for landmines. I’m kind of a scarcity thinker, so that has really helped me too. Actually for a long time when things were really severe with our child before we sent her to residential, when I look back on those days, I hardly remember them. For some reason maybe because I'm a writer, I wrote down little things every day just in a notebook.  When I look back life and beauty is happening all the time. I’m glad I wrote that down. I don’t remember writing them down. It was three little things. Sara, you do that in the morning, three things you’re thankful for. So when you are in a really hard time you can look back and go, “oh yeah, here was when this happened.” I think it can get you through the next hard time. Living in the moment is really hard, but really essential for me not to have my arm fall off holding the cup. 

Sara: If I could give anyone some advice, I'm still learning. This is something that I will learn forever. As cliche as it sounds, I just take it one day at a time. I am thankful for today. I know that God will get me through today. That is my mindset shift. That is where I try to take my mental space everyday. The hard stuff will come, and it doesn't make me a bad person to grieve. It doesn't make me a bad mom to wish that things were different. I just can't drown in those feelings. I can accept them. I can say they're okay. Then like you said, you pour those out to Jesus. It doesn't have to stay in your cup. It is going to be added, but you can always pour it out. 

We would like to send a special shout-out to our editor, Evan Brown. We appreciate his hard work, his dedication, expertise and patience more than we can say. We also like to acknowledge Davis Brown, who composed our music. Thank you both for sharing your talent with us. We would like to end today with a prayer. Carrie, would you like to share that with us? 

Carrie: Yes. “Lord, in your Word it says that your mercies are new every morning. We are so grateful. We imagine them pouring out on us like they're coming out of the sky as precious rain on a thirsty ground. In Psalms it says that you are a stronghold for the oppressed, and we know that we are oppressed by the hard things we have to carry. But you are also a stronghold in times of trouble. Those who know your name put their trust in you, for you oh Lord have not forsaken those who seek you. We are grateful for this today. Thank you, Jesus.”

Sara: Thanks for joining us this week on Take Heart. Our prayer each week is for your heart to be encouraged. We are grateful that you are walking on this journey with us. Please be sure to subscribe to our podcast on iTunes or wherever you listen to podcasts, so you will never miss a show. You can follow us on Instagram @takeheartspecialmoms. If you have any questions or comments follow the links in our show notes, we would love to hear your story. Thanks for listening. We will see you next Tuesday when we begin our talk about gratitude.