Take Heart

Stuck in the Waiting

January 19, 2021 • Amy J Brown, Carrie Holt and Sara Clime • Season 1 • Episode 23

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Today Sara shares her struggle with the term “new normal”, and the fighting posture special needs moms take on while caring for their kids. She encourages us in understanding what finding a new normal means. (I don’t want to give away the secret) and how to find joy in the waiting. You won’t want to miss her special needs mom pep talk that may bring you to  tears and her thoughtful prayer for you. Don't miss this one!

Timestamps & Key Topics:

  • 0:23 -  Intro
  • 1:05 -  Nothing to Do With It
  • 3:22 -  Choices  
  • 5:00 -  Fighting Posture
  • 7:08 -  Purposeful Waiting
  • 8:06 -  Liturgy of the Ordinary
  • 11:27- Stay in the Moment
  • 12:22- Encouragement & Prayer
  • 14:30- Outro

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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 and share an inspiring story, practical tip, and an encouraging blessing using our combined experience of over thirty 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 traveling this special journey. Thank you for joining us today. 

1:05 - Hi, this is Sara and thanks for joining me today on Take Heart. We are talking about New Normal this month. I have to admit, I am in my own head a little too often. I will take a word or a phrase and dissect it until there is nothing left of it. It is both a blessing and a curse. It seems that my curiosity over words brings clarity and calmness as often as it brings confusion and disheartenment.

Take for example the phrase we are actually discussing this month - New Normal. You should probably know that I use air quotes anytime I say that phrase simply because I don’t care for the phrase at all, and I’ll tell you why. Right after my son, TJ’s, diagnosis I was told that eventually I would find my new normal. My first thought was, “yeah, no thank you!” I wanted nothing to do with whatever normal came with this diagnosis. Trust me when searching for a normal centered around Duchenne Muscular Dystrophy and all the medical, emotional, behavioral and cognitive issues that would come with it; it was NOT something I was really eager to do. 

So, how could that person say that to me or better yet, what was she trying to tell me? What could possibly be normal about raising a child with the needs my child would require? All I could think was, you can keep that new normal, I want nothing to do with it. 

But as with anything in life, I attacked this problem as something I needed to do, something I needed to find, I needed to find, something I needed to figure out and solve. Where was this elusive new normal and how could I find it? It was probably more like how could I find it, tackle it and wrestle it into submission because that’s my typical M.O.

I searched and searched and I couldn’t find it. All I found was an aggressive and debilitating disease with no cure. There was so much more to be found in this new normal I had been thrown into as well. There was financial strain, marital strain, the need to suddenly act like a nurse when I had absolutely zero, and no idea how to be one. I saw a life where we would find ourselves fighting to belong in places we didn’t think twice of belonging before. That was not a new normal I wanted for my family or for my sweet boy.

3:22- Eventually, I realized that this life; it’s ours. I can either learn to be a part of it and live it, or I can be a victim of it. I knew without a shadow of a doubt that if I became a victim of Duchenne, my son would too. He would stand no chance of living a meaningful life. I freely admit, I was totally faking it at first. I simply smiled because the tears had run dry. It didn’t take long at all for my husband and I to figure out that we needed to attend webinars, conferences, and we were meeting other families, other children with Duchenne, other moms and dads. We were driving to doctors and therapy appointments and making connections there. We were also not only driving to doctor appointments and therapy sessions, we were driving those doctors and therapists nuts with all questions we had. They seemed to be endless. 

Eventually, we found a routine. I think that’s what my sweet friend may have been trying to tell me. Maybe she was telling me that we would settle into this routine, which would often be centered around the diagnosis, around the special needs. Maybe she was saying that we would eventually lean into what our days would entail: doctors’ appointments, hospital stays, surgeries, therapies, medicine, educational needs. The list goes on. I’m not sure what she meant by “new normal” but I think it boils down to this: life goes on. 

And maybe that is what finding a new normal truly is about: Living the life we have now. 

5:00- For us, the trick was to not get so stuck on waiting for the next new normal to pop up that we stopped living and dreaming in the here and now, today. I have found that for me and my family, the new normal isn’t what’s most frightening. Don’t get me wrong, it can be terrifying not knowing what’s around the next corner, or in our case knowing what might be around some corner in the future. But what was more terrifying for me was waiting on the new normal to come. It was like I was standing in a fighting stance at the next corner with my back to everything that was important to me, waiting to tackle whatever was around the next corner, so it wouldn't hurt my family, or at least it wouldn’t hurt them as bad. I figured I could take the brunt of the fight, I was saving them from some pain. 

Do you often feel that way? Do you feel that you’re in this constant fighting posture? If so, I’d like to tell you to just take a moment and tell yourself just how brave you are. You are fierce, mama. Your family is beyond lucky to have you. Now that you have praised yourself for being that protector, I want you to tell yourself that it’s okay to put your arms down. Put your arms down, turn around, and be in the moment with your family right now. Maybe whatever is around the next corner needs to be fought as a family unit. There’s strength in numbers. Oh, there will be times when your mama instincts will kick in. And you will know to take off those earrings, and strap on those gloves and fight. Trust me, though, whenever I say to be careful that you aren’t in that stance all the time. I was for quite awhile, and my family saw my back longer than I would care to admit. Yes, I was doing it for them, but it was still my back that they had, and it was still me in a pretty consistent state of conflict and waiting that was their norm. I don’t want that for my family. 

7:08-As special needs moms, we can often feel stuck in the waiting. Sometimes we would welcome a new normal, but it’s the middle we fear. It’s that middle between what we’re going through now and what’s going to come. It’s that anxiety in the middle that is so difficult. How long will the waiting be? How long before we find a cure? How long before we find a treatment? Will the treatment we do next month even work? How long will we wait to find a new nurse assigned to us? How long before the school calls me with something my child did or didn’t do? Maybe it’s the waiting to see how your child will adapt. Will he adapt? Will she thrive in this way or that way on her own? 

Anytime that I feel stuck in the middle and I feel stuck in the waiting, I think of this passage that I read in this book called Liturgy of the Ordinary by Tish Harrison Warren. She tells this story: 

8:06-“I have a framed print above my bed of a painting by my friend Jan, who has learned much about waiting through long and painful practice. She has had recurring cancer and significant health problems that have given her scars and hard-won joy. She's been shaped through waiting: waiting for a call for the doctor, for test results to come back, for another treatment, for healing, for she's not sure what. Her home is filled with her paintings, and one day as I walked in, I was drawn to one in particular. It was abstract, luminous and intricately textured, and there was a keyhole etched on the canvas. Standing before it, I felt like I was standing before an unearthly mysterious door. I turned to Jan and said, “I want to see what's on the other side of that door.” She smiled and said, “Good. That's exactly how I wanted you to feel.” The painting is called The Gift. She painted it during a time when she was struggling to remain faithful, as she waited and waited and waited. She explained that she wanted the viewer to have that stretching sense of waiting, of not being able to glimpse what was on the other side, suspended in a posture of expectation and uncertainty. She looked at me and said, “I always felt like I was waiting for the gift, but I have come to see that the waiting is the gift. What did that mean? For me standing before the door was maddening. And yet Jan, who had practiced waiting far longer and better than I, knew what it was like to wait patiently, believing that God's timing is perfect and that mysteriously there is more happening while we wait than just waiting. In waiting God has met Jan and shown her things that only grow with time, with changing seasons and bated breath. God is at work in us and through us as we wait. Our waiting is active and purposeful.” 

I just love that passage and those last two sentences, “God is at work in us and through us as we wait. Our waiting is active and purposeful. It’s beautiful. A link to this book and the story will be in our show notes, so make sure to check that out. But, I find when I feel stuck in the middle, stuck in the waiting, that’s when we do our most profound work for ourselves, our loved ones, and for God’s kingdom. It’s in the difficult places of the unknown, of the waiting, that we often find ourselves being able to reflect on what’s important. As we’re waiting, we often search for answers in obscure places. We search for ways to help ourselves, our loved ones, and quite possibly others around us. I often find myself in the hard space of waiting. I have learned that it’s in those moments where I find my deepest connection to my Savior. I find that when I am struggling the most, our God is holding me tighter. 

Do you feel like you are stuck in that waiting? Are you hoping for some semblance of normalcy in your life but the waiting seems to never stop? Take a moment to appreciate that God’s work is being done in the waiting. He is working in you and through you. Just like the author said, “Our waiting is active and purposeful.” 

11:27 -It was in that long period of waiting for answers (I actually feel like I’m still in the waiting, most of the time) that I realized, for me, every day is a new normal. Okay, ao corny alert! Stay with me here. Everyday is a day I choose to live by staying in the moment. I choose to be authentic in the moments I have today. That’s the gift. That’s the new normal. God is providing me with that today. I realized that I don’t want to find anything out about tomorrow if it takes my eyes off of what is important today. Nor do I ever want to find anything if it distracts me from the eternal new normal God’s promised us with Him.  It was when I stopped searching for our new normal, that I found peace in the moments of today. I was searching for a new normal, but found peace in our everyday abnormal. 

12:22- This abnormal new life we have as special needs moms, it’s challenging. I won’t sit here and pretend otherwise. There’s a saying that whatever is worth having is worth fighting for. And don’t we live that saying every day? We have found patience that only those raising children with special needs can have. We have found resilience. We have found empathy. We know what it’s like to not be able to attend an event due to a physical or a sensory issue. We have learned to include others in ways that they need to be included because we have been excluded. We have found our voices. We have found ways to advocate for our children in everyday situations like the grocery store or at their school. We are inventive. We have built relationships with all of our children in ways that may not have been possible if we were caught up with the QUOTE “normal” grind. We have found our own special friends. We have found each other because we know what each other is going through. No, your trials are different from mine, but we get each other. We see each other. We listen. We love. And we wake up and do it all over again tomorrow. Because THIS is our new abnormal. 

13:36- I’d love to pray for you right now.

Lord,

Thank you for today. Thank you for the moments you have given us. I pray that we don’t take those moments for granted. I pray that you still our hearts in these periods of waiting. The waiting can be so difficult, and we know you are doing great work in us and through us, as we wait. May we recognize that and take comfort that you have already provided us our new normal. You have a place prepared for each one of us and that place is with You. You and You alone are our comfort and our peace. I also thank you for each of these lovely souls listening today. I hope they feel heard. I hope they feel seen. And I hope they feel loved. I pray that they feel your love in tangible ways today.

In Jesus’ name, 
Amen

14:30- 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. As I mentioned at the beginning of the podcast, we have a new free resource you can download straight from our website. Do you struggle with finding peace, hope or gratefulness while traveling the hard places of this special needs moms journey? If so, then go to takeheartspecialmoms.com and click on the banner at the top of the page There are three exercises with journal pages, geared for special needs moms. We hope it is a helpful tool for you. We’d love to hear your feedback as well.

Be sure to subscribe to our podcast on iTunes or wherever you listen to podcasts, so you’ll never miss a show. You can join our community by signing up for our weekly newsletter on our website at takeheartspecialmoms.com. You can also follow us on Instagram and Facebook @takeheartspecialmoms. If you have any questions or comments, follow the links in our show notes. We also have a full transcript as well. Thanks for listening, we will see you next Tuesday when all three of us come together to wrap up this month on New Abnormal.