Take Heart

Dealing With the Emotions of a New Normal

• Amy J Brown, Carrie Holt and Sara Clime • Season 1 • Episode 24

Share episode

Today’s collaborative episode uses Psalm 23 as a reminder of the importance of crying out to God and grieving loss and change in our lives as special needs moms. Amy, Sara, and Carrie also discuss our constant companion, adjusting to the new normal of invisible disabilities, and the significance of giving yourself grace. You don’t want to miss this episode. 

January 16, 2021

Timestamps & Key Topics:

  • 0:23:     Intro
  • 1:05:     Crying out
  • 3:37:     Honest with God  
  • 7:47:     Don’t Wait for Real Life
  • 10:53:  Constant Companion 
  • 14:00:  Wheelchair Ramp
  • 18:43:  Reminders
  • 23:40:  Pay Attention 
  • 27:38:  Give Yourself Grace
  • 30:00:  Psalm 23

Episode Links & Resources

If you enjoyed our podcast, please...

Sara (0:23)
 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, share an inspiring story, practical tip, and an encouraging blessing using our combined experience of over 30 years of parenting children with special needs. Make sure to listen through the end of this podcast as we’ll share a free exercise for special needs moms geared to help with gratitude, hope, and peace on this special journey. Thank you for joining us today.

Sara (1:00)
Hi. Welcome to Take Heart I'm Sarah Clime, and I'm here with Amy Brown and Carrie Holt to wrap up our topic this month, New Normal. Personally because of my son's diagnosis the phrase “new normal” kind of scares me. Change can be scary especially when we aren't comfortable or completely in the know of what our normal may  look like. We've all heard the 23rd Psalm, and most likely most of us can say it by heart. My grandma was old school King James version. She even requested a preacher pray this over her a few days before she passed away. I was so extremely fortunate to be there, to see her face, and just how much these scriptures of transition and renewal comforted her at that time. Psalm 23 has one of the most recognizable verses, “Yea, though I walk through the valley of the shadow of death, I will fear no evil; For you are with me.” (KJV) To me Psalms 23 is the epitome of accepting God's grace for you in his kingdom. It is the definition of the perfect new normal. What we don't often hear, though, is what comes right before Psalm 23, which is Psalm 22. The chapter begins with a cry of someone in extreme anguish. It says, “My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? My God, I cry out by day, but you do not answer, by night, but I find no rest.” (Psalm 22:1-2, NIV). They’re not only words of anguish, but feelings of abandonment and confusion. Not only did the psalmist have difficulty with his new normal, so did Jesus Christ. Jesus cried out on the cross, as well. The first verse in Psalm 22 reflects Jesus’s exact words on the cross when he was crying out to God. Then in the last ten verses of Psalm 22, the psalmist thanks God for rescuing him. Talk about an emotional rollercoaster, and I think we've all been on that. The words may be different today, but we too, often cry out just as the psalmist did and even how Jesus died on the cross. We cry out when we are going through those hard places and often moments of transition. Amy, I have a question for you. Do you feel that the psalmist just needed to cry out before finding gratitude? Do you feel that as special needs moms we need to cry out to God in that abnormal, just trying to find our new normal? 

Amy (3:37) 
Yes. One thing I love about the Psalms is they are so human. They're not pretty. They're not tied up in a nice bow. I think we have to go through those emotions to get to the more positive emotion. It's not a formula. It's not that. I feel like we have to be really honest and real with God and that’s okay. In the past, I felt like it's not okay to have anguish. I can have it in my heart, but maybe not say it to God. He can handle all those feelings and all those emotions. Until we get through that, I don't think we can move on. If we bottle all that up, it's not a healthy place to be. I don't think we can move on to gratitude or perspective change or anything until we can be honest and raw with God. That's why I love the Psalms because they're all over the place in the Psalms with their feelings, with their anguish, with their gratitude. So, yes I think that is such an important step that sometimes we don't allow ourselves to do.

Sara: That's good. What about you, Carrie?

Carrie (4:38) 
Yes, I definitely agree with Amy. We have a tendency to put our armor on, or be in denial, or even just kind of numb ourselves to our emotions because we have to handle the hard things. We have to think straight. We have to make decisions and choices for kids. We definitely need to take the time to grieve our hard places. I can remember reading the book of Job either in the early days of my son's diagnosis when I was still pregnant or maybe later on. It's kind of funny because I think if you were raised in church, sometimes you have this Sunday school version of Job. This man goes through a lot of hard things and then he is blessed by God. What you don't realize is that he cried out in anguish and anger. He even says I wish I would never have been born. What is so interesting to me is just recently I was listening to another podcast and he was talking about Job. He pointed out in Job 42 that as God was speaking to Eliphaz, Job’s friend, he says to Eliphaz you need to go and ask Job to sacrifice for you because only Job has spoken rightly about me. He says it twice. God says it twice. That really struck me because it made me realize, sometimes it takes more faith for us to go to God with our anger and our doubts and our fears, especially our anger, especially our frustrations about our situation. He wants us to go to him. For me, music helps me to grieve and worship music helps me to cry out to God in those moments of grief. In Western culture we are not good with grief and grieving, and especially our modern Western culture. We really don't know how to do it very well.

Sara (6:44) 
I absolutely agree. I think when you were talking about just the Western culture, we don’t know how to grieve, it immediately made me think about how in other cultures they used to hire people to grieve and make noise. I always remember that whenever I feel like I shouldn't be crying. Those are all things that I put on myself. When somebody says, “You’re just such an inspiration. I couldn't do what you do.” I want to scream because I want to say, “Really you couldn't sit in the closet crying for an hour.” That happens. That's not really an inspiration, is it? I think it's okay. I'm not hiring anybody to grieve for me, so I'm allowed to grieve. I have a question. Carrie, that kind of brings me to the next question. Does the term “new normal” provide feelings of renewal and peace or anguish and confusion or something else for you?

Carrie (7:47)
The term “new normal” for me means change. I talked a little bit about this in my individual podcast. I don't do well with change. My parents still live in the same house I grew up in, and there's a level of comfort for me in that. Life is all about change. One of the things that I've learned through our journey with Toby is that you can't wait till life is calm to start living. I definitely have a tendency to do that because I'm a bit of a perfectionist. I want everything to be perfect and wrapped up in these nice neat pretty boxes. We just came off of Christmas. There’s a book that I have read called Teaching from Rest by Sarah Mackenzie. It is geared towards homeschoolers, but there is so much truth in it. One of the things that she talks about is she actually quotes CS Lewis. He's talking about our interruptions in life and the times when we think, I just wish this day would be normal. He says this:

“The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one's “own,” or “real” life. The truth is of course that what one calls to interruptions are precisely one’s real life - the life God is sending one day by day; what one calls one's “real life” is a phantom of one's own imagination.” 

I remember reading that for the first time and thinking this is real life, our hard times, our hard days with our kids. Certainly, life is not what we expected. When I set out as a  mom almost 17 and a half years ago, I wasn't expecting to be a special needs mom. I didn't want to be a special needs mom. I can remember I was actually pregnant with Toby and I took our oldest son for a well visit. Then we found out he had some eye issues, and he had to have glasses. I remember being dumb struck; my perfect child is not perfect anymore. It was just glasses. Of course Toby comes along, and we have a tracheostomy and a ventilator. When things go wrong during the day, when life throws us curve balls, or when a new diagnosis is piled on, a new change, a deterioration in health or a deterioration in behavior, that that is real life. We can't wait for life to be calm to keep living. 

(Sara) That’s so good. What about you, Amy, what does the term, new normal, bring up for you?

Amy (10:53) 
First of all let me say that I think Carrie and I are soul sisters because I hate change too. I've lived a life of change since I've been married. For me it's fear because I want to be able to control the situation. I've often said this on this podcast, when the going gets tough, Amy gets going. I get afraid. I just want to figure it out. It said in Psalm 23, Yea, though I walk through the valley of the shadow of death, but I will fear no evil for you are with me. Well, I get stuck in the valley, and I forget that I have a companion that never leaves me. I don't immediately remember that, and I've been doing this a long time. Maybe I'm getting a little bit better at not being in the fear space so long, but for me it's fear. It's the unknown. How am I going to handle it? How am I going to do it? What am I going to do next? The bottom line is whether you're a special needs mom or not, every day is different. It just so happens to seem more pronounced for us as special needs moms. I think Carrie’s right. Being where you are right now and waiting until life gets all normal is never going to happen. I read this somewhere, and I'm not going to know where it is. I remember once again that it’s that practice of the present moment. Looking over our shoulder at the past or scanning the horizon, God is right here now, and he’s walking with us. That’s what we have to remember, the companion. I look at the road, I look at the hills, the valleys, trying to assess what I'm going to need to walk that road. I forget I have a very able and loving constant companion next to me. That's kind of what the term brings out in me. 

Sara (12:44) 
I love that. When you were saying you get stuck in the valley, I tend to want to scale the mountain. I’m tired of the valley. I'm just going to do something. I don't do well with waiting, and I talked about that on my podcast. I think that's the hardest part of that new normal is the waiting because in the waiting is when you have all that time to fear. You have all that time to think. You have all of that time to think, well this isn’t what I ordered. When you were talking, Carrie, I thought of. I tell my kids all the time, well not so much now, but when they were younger. I'm not a short order cook! Because everybody wanted something different, and that's not going to happen. I always wonder if that's kind of how we treat God when we're looking at our lives. We feel like we have to adapt to this new normal. I wonder if he is saying that this isn't a new normal, this is THE normal that I have chosen for you. This is the normal I know you are equipped to handle. I always wonder about that, if he’s up there saying, “I'm not a short order cook.” You can’t just order your kids. It doesn't work that way.

Sara (14:00) 
Amy, I know that most of us have this diagnosis date. We call it D-Day. We’ve talked about that, and I know you, Carrie, you call is that as well. We call it D-Day and most people do. Ours was February 8, 2012. I’ll never forget it. Amy, I know that a lot of our listeners out there are like you who don't have that firm diagnosis date because it's cognitive or behavioral or whatever it is, there's just not that point. My question for you in that regard and all the listeners that can relate to that, is at what point did you realize you were adapting to a new normal? Did you realize that at some certain point?

(Amy): I think for us, our special needs kids were number four and five of six kids, so I kind of had this parenting thing down, I thought. Then we adopted these two children. For a long time I just thought I was doing something wrong. Even though I had a lot of mom experience, I just kept thinking, “it must be me,” because there's not anything you can physically see, you just have behavior. Then you get a lot of people telling you’re doing things wrong, unfortunately. That’s a thing. I had to get past my own guilt and shame. Actually, we were in a pretty severe situation when I realized wait a minute this is not typical. This is not just me figuring a better way to give time outs or discipline or pray more or whatever. This is not typical. I often say to moms with kids with invisible disabilities, if your kid needed a wheelchair ramp, you would build it. You wouldn’t think a thing of it. You wouldn’t say, “oh man, I’m a bad mom.” No, and that's how I had to look at it from then on out. My new normal is what ramp does my child need, and that's going to look so different than any other kid. It just is. I think I was sticking to shame and guilt and trying to figure out how to fix it before I realized I can't fix this, and that took a really long time for me. That’s very typical. I get a lot of emails and talk to a lot of moms that have kids with issues like this. They say, “We just want to do it like we did with the other kids,” and I’ll say, “That doesn’t work.” I also have a physically disabled kid. I know he can't climb to the top of a mountain. He can’t. I wouldn’t expect him to. To have that mindset shift of this child with behavioral issues can't do this thing. They just can't. They can't be at a Christmas gathering or a vacation with a lot of people without a lot of adapting. I think that was my realization, that my new normal is one that other people can't see that it's a new normal. That’s my acceptance of it, which kind of helped me move forward. 

Sara (17:08) 
Absolutely. I know this is probably going off on a squirrel trail. I think it's so lovely that you were talking about an invisible diagnosis or an invisible disability that you started looking at it like if my child needed a wheelchair ramp, you would build it. It has to be so hard. For me, we put in a wheelchair ramp, and we have people that want to help us build it. We have people that want to donate the wood. But in your situation, you have to build that ramp, but most likely you have people wondering why are building a ramp? You don't need a ramp. That struck me. Like I said that was a total squirrel moment. It’s so true. It’s got to be so hard to find that new normal when you have people questioning your process, and how you go about that. 

(Amy): Right, and with behavioral issues, it’s just one of those things that they aren’t acceptable in the world. People don't understand it. I often tell moms, you just have to do what's best for your family. You have to get a tough skin, and that is not easy to do. It has not been easy for me. Just in the last month, I’ve had to say, “Okay, I'm not going to let what these people say affect what I know is best for this child.” But it can be really lonely. But the example of the wheelchair ramp, I go back to that a lot. This is this kid’s wheelchair ramp. That's how I have to look at it. 

Sara (18:43): Do you feel that your new normal today is different than earlier in the journey, or it's kind of the same process with just the same steps?

(Amy) It's interesting. Just in the last month, we've kind of had a blow up with one of our kids with attachment disorder. I kind of got panicked, and I was talking to my friend, Kathy, about it. She's known me for years. She said, “Amy, you've been here before, and you did okay. Now, is it perfect? Is everything all happy?” No, It helped me to go wait a minute. I've done this before. I've been in a new circumstance that has scared me so many times, and God hasn't left me. That helped me, because sometimes you feel like what am I going to do? Wait a minute. I’ve done this. I have what I need to weather this. With special needs kids, there's a big concern about adulthood. what's going to happen then? It’s always going to be changing for me. I'm thinking that I'm getting a little bit better at saying, “Oh yeah, I’ve been here. I'll get out of this.” I can look back and say, “Yeah, that was hard, but I didn't crumble. We managed to survive it, maybe not with the outcome we wanted, but God didn't leave us in that.” I think that's how my new normal process is different because I don't take as long to perseverate on how scared and out-of-control I feel. I realized, I’ve done this. I'll do it again, I’ll probably have to do it again next week, then the following week. I will always be doing this. 

(Sara) For you young mamas out there, that's the beauty of being seasoned. We're not older, we’re seasoned. That’s the beauty of it is that you find yeah, I’ve been here before. We’re going to get this. You might not know how you're going to handle it, but you know it’s going to be handled. I think that that’s great. I love that. Carrie, I know that you had your diagnosis. You had that firm date, and yours was when Toby was in utero. What about yours? Is it different now than what it was then? Do you feel like you're constantly adapting to a new normal, or have you reached that steady plateau?

(Carrie) I feel like it is ever-changing. I remember when Toby was four or five, I  had the realization that for the duration of his life, at least for as long as we are helping to care for him, we're going to be living in that grieving cycle because there is always  this sense of loss when things change, and a sense of grief. I think it's important for our listeners to realize that when you know that that's what you can expect. I think it’s sometimes about expectation. Amy said in another podcast about being a catastrophic thinker, I'm definitely like that. I need to know what to expect. The day of diagnosis it was this shock and awe kind of day and that grief. Then of course as we worked through that, I switched into planning mode because that's my best way. Like Amy said, we’re a lot alike. I think okay I’ve got to put my planning hat on. What are the things that I can control because I'm going to control everything that I can. Along the journey, we've had so many bumps in the road and so many things that have changed into a new normal. I've learned that I have to grieve those losses along the way. When he was about five, he was walking in therapy, using his braces and his walker a little bit. There was that hope that maybe he would be able to walk. Then his scoliosis was so severe, he had to have rods put in, and it totally changed all that. We had to get used to the fact that he is going to be a full-time wheelchair user. I think for our listeners, it is important for you to know that it's okay to grieve those losses along the way and to surrender those outcomes. Like Amy said earlier, remember that God is with you, and to look back. I think that's one of the benefits of being a little bit more seasoned. You can look back at all of those changes. Each time a new normal came along, you can see how God was there, and you can see how He provided. There are the crazy God stories of people showing up, or friends being there, different things you can't really explain that except God orchestrated that person to be in my life at that moment when I needed it.

Amy (23:40) 
Can I say something here too? A lot of times with a new normal, we are focused on what our kids’ new normal is going to be. We kind of gloss over our own emotions. I think it's really important to pay attention. In the time that I've known Carrie, Toby’s been in the hospital several times. She knows how she's going to feel after the hospital stay from all her experience. I was struck by how she has paid attention to that. She knows when she gets home this is how it's going to play out emotionally for her. I think it's important to pay attention to that as a mom because a lot of times were so focused on the kid, and now all the sudden all the wheels come off our buses and we’re wondering what happened? The more we do it, the more we understand that about ourselves, but sometimes we don't pay attention to ourselves in that regard. It doesn't mean it's a big long introspective, just pay attention. After 2 days in the hospital is when  I crash. I think that's really important for moms to think about.

(Carrie) Also, those anniversary dates. I think it's important to pay attention to those too. Toby's birthday is coming up and then there's a lot of anniversary dates of when he crashed, when he coded, when he was intubated, when he was in the ICU for a month. You would think the older he gets the easier it would get, and it does not get easier. So, I have learned to pay attention to those moments of what I've heard described as situational depression where you just feel really down, you don't feel like doing a whole lot. Then, I think, what's the date today? What was happening this time last year or this time 10 years ago? Your body does hold those emotions and all of that inside of it. Thank you for that reminder, Amy, especially for our listener because it is important to pay attention to those dates and those anniversaries and things that are happening.

Sara (25:35)
I agree, Carrie, because you were talking about you just really need to pay attention. There have been so many times I tried to not think of the negative. I had one person ask me why I was holding on to his diagnosis day That was the phrase that they used. I was talking to my therapist, and she said you're not holding on to it. It's a form of PTSD that is something that your body recognizes as traumatic. The season or certain situations will trigger that. I think earlier in my journey, I felt like I was failing at finding my new normal. What is wrong with me? Nothing is normal, and it will never be normal again. In our situation, TJ's diagnosis is progressive. Once we adapt to something, something's going to change. In the community that were in, they call them mini deaths. We have to grieve the loss of: Wait, when did he stop standing up on his own? When did you stop being able to brush his teeth? Sometimes you don't even realize that they come, but you're not a negative person by feeling those and leaning into those. You're actually healthy. That's what I would want people to know is that one, this is the word nerd in me, new normal is just a dumb phrase to begin with. I hate the phrase. I just want to let everybody know because you cannot have something new and normal. Two, like Carrie had said pay attention to that. Don't fight it. It's part of the journey. Actually, it's going to help you deal with the next one, the next time. 

Carrie (27:38) 
I think too, I would love to remind our listeners that it's okay to not be okay. Toby had a stay in August and his shunt was acting up. He's always on the same floor,  and so the nurses know him. We know the floor manager. Literally sometimes it is a home-away-from-home, as sad as that is. They decided with the monitoring thing he had in his brain, they needed to move us to the main ICU. It was really late at night. It was like 11:00 p.m., I’m exhausted. The nurse came in to tell me what was happening, and I completely lost it. They were asking me if I needed a chaplain. I was just sobbing, and I was trying so hard not to sob because I felt so silly. I was thinking this is ridiculous, why am I having this reaction to just changing a floor? But it was a change, and I was grieving it. What I realized several weeks later was that we've had another time when we had to move from a floor into the ICU, and my body was carrying that. Again, it is important to pay attention. It's and it's okay to not be okay. It's okay to cry in front of the doctors and the nurses and to need some time to adjust to whatever it is that you're that you're needing to adjust to in those moments. 

(Amy) It’s also okay to get mad. I think sometimes we think well, I shouldn’t have  been mad, but it's a hard stressful situation. Carrie, if I had had that response, you would come at me with grace, and say it's okay no wonder you have that response. But we don’t give ourselves that same amount of grace. We went to a friend in a minute, but not for ourselves. Sometimes I tell people to look at yourself like you would your friend. If your friend did that, you would be right there, arm around them, going, “I get it.” We don't treat ourselves that way.

(Carrie) That’s such great advice that we need to give grace to ourselves. 

Amy (30:00) I'm going to read the 23rd Psalm, but today we've decided to change the pronouns because we want you to hear this in your heart and know that these words were for you.

The Lord is your Shepherd. You have all that you need. He lets you rest in green meadows, and leads you beside peaceful streams. He renews your strength. He guides you along right paths bringing honor to his name. Even when you walk through the darkest valley, you don't need to be afraid for he is close beside you. His rod and his staff protect and comfort you. He prepares a feast for you in the presence of your enemies. He honors you by anointing your head with oil, your cup overflows with blessings. Surely goodness and unfailing love will pursue you all the days of your life, and you will dwell in the house of the Lord forever.

Sara (30:55)
Thank you, Amy. 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. Be sure to subscribe to our podcast on iTunes or wherever you listen to podcasts so you'll never miss a show. We are offering a new free printable exercise with journal pages to help special needs moms find peace, hope and gratefulness in the midst of all the hard places on our journeys. You can find it on our website @takeheartspecialmoms.com. Don't forget, you can also follow us on Instagram @takeheartspecialmoms. If you have any questions or comments follow the links in our show notes. We also have a full transcript there as well. Always remember that we would love to hear from you. You can always contact us through our website or e-mail at takeheartpspecialmoms@gmail.com. Thank you for listening. Join us next Tuesday when we begin our month talking about connection.