Take Heart

Helping Yourself & Your Child Adjust to a New Normal

• Amy J Brown, Carrie Holt and Sara Clime • Season 1 • Episode 22

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Today Carrie discusses the emotions we often experience with adjusting to new normal, the importance of grieving, changing expectations, and worship. She also gives some practical tips on how they are helping their son walk through acceptance of his new normal, and what Jesus taught us about disability in John 9. 

January 12, 2021

Timestamps & Key Topics:

  • 0:20 -  Intro
  • 1:03 -  New Normal
  • 2:06 -  Unexpected Diagnosis
  • 3:34 -  Dealing With Change
  • 5:06 -  Four Processes
  • 7:50 -  Son’s New Normal 
  • 8:34 -  Three Tips
  • 12:35- A Blessing
  • 13:14- Outro

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Listen in for a special announcement at the end of our show today.

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 Sara, Amy, and Carrie will explore a theme, share an inspiring story, a practical tip, and an encouraging blessing using their combined experience of over 30 years of parenting special needs children. 

Hi there, it’s January, and it’s Carrie Holt today. Happy New Year. How has your new year begun? Has it been filled with consistency or has it reflected a little bit of what 2020 was like and is it ever changing? Our topic for this month is New Normal. I kind of find that ironic when we had picked this topic many months ago. As special needs moms we are used to adjusting to change and new normal. If we weren’t flexible before, we have certainly learned to be more flexible, to adapt and change.

So, true confession about myself, I hate change. For the most part of my life I grew up in the same house. In fact, my parents still live in that same house I grew up in. Sometimes the thought of them ever moving out of that house will instantly bring me to tears. When I left home for college, I moved to a different state, but I had a really rough freshman year. It was hard to be away from home, comforts of family, and familiarity.

I will never forget what it felt like when we first learned the diagnosis of our son, and it turned our world on its head. Within a few weeks someone sent me the story or the short allegory called Welcome to Holland. It’s an analogy of what it feels when you learn your child is going to have special needs. If you’re not familiar with it, I’ll leave a link in the show notes. But recently, I came across a new analogy in the book entitled The Life We Never Expected by Andrew and Rachel Wilson. Andrew says when you learn you’re going to be a parent of a child with special needs it’s like being invited to a fancy dinner. You’re having this wonderful dinner, maybe it’s filet mignon or fish, and you’re talking with others. Then it’s time for dessert. The host or hostess brings out this amazingly wrapped box with a chocolate orange inside. As everyone around is opening their boxes and biting into the decadent chocolate, and tasting the glorious orange, you open your package to discover you just have a regular orange. It’s still juicy, and tasty, but there’s pulp, and seeds, and that white stuff called pith. It’s not that it’s not wonderful and tasty and full of vitamin c, but as soon as you saw everyone else opening the chocolate oranges, that’s what you expected you would receive too. It’s not that your orange isn’t wonderful, it just isn’t what you were expecting (Wilson, 33-34).

Whether your child was diagnosed at birth or along the journey, or it’s happened slowly with small changes along the way, this isn’t exactly what we were expecting. This is a new normal, different. Usually when we go through this, we definitely experience all kinds of emotions. When I began to think about the topic for this month, it reminded me that when we are talking about a new normal it’s about how we deal with change. As special needs moms, we often don’t know what to expect. Our days can change so quickly. We have had days where my son is totally fine, and then he's ended up in the hospital, or we had to call an ambulance. For you it might be that your child's behavior upsets your day, a medical emergency, learning needs, or just that you're not getting enough sleep because you're up all night with your child. 

There definitely seems to be a lot of different reactions to change or a new normal, and honestly these reactions are not wrapped in nice neat boxes with bows. Our emotions are complex, and they overlap. I know some of the emotions that we experience to our new normal are: shock, denial, grief, feelings of anger. This is not fair. This is not how life was supposed to be. Then there's the numbness and checking out. Another emotion is the acceptance and embracing of what is coming next. 

Some of the ways that I have worked through dealing with a new normal and I hope that these are helpful for you is:

1. Grieving. It’s important to grieve. It is so important to grieve the things that we have lost, to grieve the changes whether those are big or small. In that same book mentioned earlier, Andrew 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” (Wilson, 26). Speaking from experience when I haven't taken the time to grieve the things that I've lost properly it comes back to bite me later After we're dealing with grief, it begins to become important to change your expectations. 

2. Change Expectations. Again, these ways of dealing with new normal are not mutually exclusive. You can hold grief and changing expectations in the same hand. When we change our expectations to understand that life is going to be a little bit different than we thought, it helps us to deal with the everyday. At least it does with me. When James tells us not to be surprised by the fiery trials, then we can expect them to come. But we can also expect that God will never leave us or forsake us in them. Another part of this has been acceptance. (This is actually Peter, but James talks about trials also).

3. Acceptance/Surrender. That has been holding our plans and our children with an open hand. We are just coming out of the season of Christmas, and I think it’s important to take some of our cues from Mary. She was introduced with something that was completely unexpected. She was going to be the mother of her Savior. She asked questions, she was afraid, she had doubts and struggles, and she surrendered. But, in that surrender, that didn’t mean that what she was dealing with wasn’t hard. It just meant she had to trust God each day for the strength to do what God had called her to do. Another part of dealing with a new normal is worship. 

4. Worship - I know this might seem like a strange way to deal with it, but as we work through surrender and acceptance to what our new path in life is, God begins to reveal things: his presence, his mercy, his grace, and faithfulness. We can worship him in our grief, when we’re changing our expectations, and in our surrender. 

So, our son, Toby, turned 14 last month and lately we’ve been dealing a lot with him asking life’s hard questions and him dealing with his new normal. Largely, over the last couple of years it has been the realization that he will never walk, that he will be in a wheelchair for the rest of his life. He asks things like, “Why did God make him this way? Why doesn’t God choose to heal him right now on this side of heaven?” Maybe you ask those same questions about your child. I don’t pretend to have all the answers, but here are few things I have been learning in helping our son deal with the realization of his new normal.  First of all, and this has been the one that has been the most difficult for me has been:

1. Sit and listen to him in his grief. I am a fixer by nature, and I just want to fix it for him. I don’t want him to have all the complex emotions, and he has been known to tell me, “Mom, don’t fix it for me mom, just listen.” I have to be comfortable enough to let him wrestle spiritually through with his doubts and questions, instead of just giving him the answers. It’s always nice in our grief to have someone sit with us and say, “You know what, this stinks. It’s pretty horrible, and I’m sorry.” That has been one of the ways I have been learning to help Toby with his grief is to sit and listen to him. Another way that we’ve been helping Toby deal with his new normal is: 

2. Pointing him back to Jesus. I don’t know if this passage in John is comforting for Toby yet, but it has been for me. It’s John 9. In John 9, I feel like Jesus is very clear in giving us an answer about why a man was born with a disability. In this case blindness. He says, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him." (John 9:3). This gives me comfort, and I hope it does to you too that God would choose to use us and our kids to show his glory and to work his mighty works. What's interesting about this chapter is I used to stop in verses one three. But the rest of the chapter shows some very trying circumstances that this man, who was formerly blind, goes through. First of all, he is questioned by neighbors. And then he's basically interrogated by the Pharisees. At first he admits that Jesus is a prophet. Then they go on to ask his parents about why he was healed or how he was healed.  The parents tell the Pharisees to ask the man. He’s old enough to answer his own questions. It even says his parents were afraid to admit that Jesus was the son of God because they had been threatened to be put out of the synagogue. As a result of his answers to them, they cast him out and Jesus finds him. Finally, Jesus asks him a very important question. “Do you believe in the Son of Man?” He says, “Lord, I believe,” and worships him. 

The amazing part of this narrative is NOT just that he was healed, but that he acknowledged that Jesus is The Son of God. The change that was in his heart. May we allow our new normals to point us back to Jesus, for us to remember his promises, and for him to work through us. As Steven Curtis Chapman says in an old song that he wrote called Believe Me Now.

I am the God who never wastes a single hurt that you endure.
My words are true and all my promises are sure
So believe me now.

So, just as the former blind man believed, do you? The last way that we have been working on helping our son adjust to his new normal has been: 

3. Celebrate small healings. There is a time to grieve, and then there is time to rejoice. There is a time to look back over his life and celebrate the small ways God has worked. Our son used to have a feeding tube, he used to not be able to speak with his trach. What are some small healings you have seen? What can you celebrate today? Where have you seen God work? Sometimes when we are looking for major healing, like walking again, or behavior to stop, or an amazing medical technology that will completely heal our kids, we tend to miss the small ways God is working, redeeming, comforting and loving us.

So as we think about our new year and our new normal this year, may we look to Jesus. May we grieve our losses. May we change our expectations. May we hold acceptance, surrender and worship all in the same hands. 

“The Lord bless you and keep you. The Lord make his face shine upon you and be gracious to you. The Lord turn his face toward you and give you peace. Amen. (Numbers 6:24-26) 

Thank you for joining us this week on Take Heart. Our prayer each week is for your heart to be encouraged. We are so 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. Our special announcement is that today is our last day for entering our big New Year Give Away. It has a $50 Amazon card, five books that we’ve chosen and mugs. Since Take Heart is all about connection, we hope that you can share this with another special needs mom who has become your friend. This giveaway is for U.S. Residents only and details to enter are on our Instagram or FB page. The links are in the show notes. Remember, you can follow us on Instagram @Takeheartspecialmoms and be sure to subscribe to our newsletter on our website at www. Takeheartpspecialmoms.com. If you have any questions or comments, as always we would love to hear your story. Listen in next week as Sara shares her thoughts on new normal.