Take Heart

Viewing Your Disabled Child with Wholeness

• Amy J Brown, Jodie Pine, author • Season 3 • Episode 124

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Jodie Pine shares her experience and insight from adopting two boys with special needs, one with clubbed feet and the other with Spina Bifida. Through the challenges of raising a child with significant special needs, she was led to look at her kids through the lens of wholeness instead of deficits. She emphasizes the importance of accepting children for who they are rather than focusing on their progress or appearance and her perspective from feeling like she had to fix everything to allowing her sons to be her teacher.

Ep. 124; April 18, 2023

Key Moments:
[3:56] Jodie’s adoption and diagnosis story
[9:27] Allowing her child to be her teacher
[13:22] What is living life to its fullest?
[14:45] Learning to pay attention
[21:39] Not looking to the medical community for breakthrough
[28:59] Joni Erickson-Tada Beyond Suffering


Resources:
Radical Acceptance
This Here Flesh
Joni and Friends: Beyond Suffering
Joni and Friends Family Camp
Soul Care Institute
Jodie’s Blog
Unfinished

If you enjoyed the show:

Jodie Pine 
She said, "Ask me what I want to be, but not before you ask me who I want to be. Ask me who I want to be, but not before you ask me the more searing question of who I am?"

Amy J. Brown
Welcome to Take Heart, where our goal is to offer encouragement give hope and insight, so you can flourish on your journey as a special needs mom. Each month we explore themes, share inspiring stories and practical tips,   and our desire is for you to feel connected and encouraged. 

Hi, I am so excited to share with you my conversation with Jodie Pine. Jodie is a mom to five and Nana to two. She has resettled in the US now for seven years after 20 years of ministry in China. Jodie is currently pursuing her certification in spiritual direction. Her two teenage Chinese sons still at home keep her busy with band events, therapies, and medical appointments. Her youngest son's complicated medical journey that included the diagnosis of brain cancer in 2020 has opened her eyes to see the world differently and to trust God in new ways. God, thank you so much for being here with us today.

Jodie Pine  1:07  
Thanks for inviting me, Amy, I'm excited to be here with you.

Amy J. Brown  1:11  
Can you start by telling our listeners a little bit about your story, and your family and your journey.

Jodie Pine  1:19  
We have three biological children and they grew up in China, where we lived for 20 years. We adopted our two Chinese sons in 2013. They were ages seven and eight from the orphanage where we were living in China. They were not biological brothers, but had grown up together in the orphanage. We lived in China for another year and a half after adoption, and then moved back to the US largely because of the significant needs that our younger of the two boys we adopted had. Now, we've been in the US for almost eight years. Four of those were in Colorado Springs, and then we went to South Bend, Indiana three and a half years ago.

Amy J. Brown  2:13  
When you adopted your boys, did you know that they had special needs?

Jodie Pine  2:18  
Yes. At the time that we were in process to adopt them, the older of the two boys had clubbed feet. So that was his special need. The younger of the two was born with Spina Bifida, but was very high functioning with that. After we got matched with both of them, we actually discovered that the younger of the two was in a coma, in the hospital and had been for six days. He was just coming out of the coma. They didn't know he was going to make it, but he had been diagnosed with encephalitis, a severe brain infection that completely changed his life. It would change our lives completely because we had been approved for mild special needs when we were in the adoption process, and this was definitely more significant. We knew there were special needs, but then things changed. We got thrown a curveball and the path went a different direction than we were expecting but that's kind of been the pattern of God's work of showing that he's still there even when things turn out differently than you would expect. 

Amy J. Brown
Yeah. Some of us have a gradual journey? We were trying to figure out a diagnosis, or some of us got a diagnosis moment. What were those first few weeks, days, months, like when they first came into your family?

Jodie Pine
Yeah, it was hard. I mean, I remember the second night that our son, the one with significant special needs, was seven, but I would say he was like an infant in a seven-year-old body. He was in diapers. 
He was not able to walk or talk, or feed himself. I didn't know if he'd ever be able to communicate with us. We had no idea what kind of recovery he's gonna make. There's no way of predicting that, the doctor said. I remember standing beside his bed, in the middle of the night watching him. He had a movement disorder as well that developed not while he was in the hospital with a coma but a couple of weeks later. As his body was moving uncontrollably. It's called athetoid motions, kind of a snake like movement and became more spastic after he came home. I remember thinking like, if he's not able to communicate with us, I don't know. I'm projecting into the future: 5, 10, 20 years from now, what is this gonna be like? I felt overcome with a sense of, God, I have no idea what you're doing in this, and how can this be good? I want to trust you, but I don't know how to do that right now. There were a lot of tears during that time of the overwhelm. I think part of it too, we were living in China and did not have a really strong support base, so feeling very alone in the journey. That's what I appreciate about your podcast so much. I think in the sense of special needs moms often feeling alone. There's such a blessing that comes through community and that reminder that we're not alone. I love this podcast that you've started and really honored that you invited me to be part of this, because I think the community that you have is amazing. 

Amy J. Brown
Thank you. When you said you were late at night standing over the bed going, projecting, I think that's really common as special needs moms as we talk about what's going to happen next year, and then the next year.  I think it's a very universal and very normal way to feel that it can become such a slippery slope of despair at times. I don't know about you, but for me, I have to learn to pull my brain back from that and give it to God. In the midst of all that, was there anything that you did that helped you not to forecast too much?

Jodie Pine
Well, I mean, if I could jump ahead. In 2020, after we had moved here in Indiana, our son Daniel's health was going downhill. We had done all of these things, just trying to help him get as many resources as he needed to reach his full potential (whatever that would be) because the brain infection left him with an intellectual disability and a lot of trouble remembering things. HIs memory is one of the ongoing, biggest difficulties that he has. A lot of the physical, like he was able to learn how to walk and talk again. His speech didn't come back for three months, but he did start talking again. 
Those kinds of fears that I had early on; they unfolded in that way. I think the ongoing challenge, how to function in this world. I didn't know if he would ever be able to make it in a public school setting. We tried a kindergarten in China, and it didn't work. His behavior, laughing to himself being disruptive, different things weren't working in a normal classroom setting. I didn't know how that was ever going to be. As we lived those four years in Colorado, I think he definitely reached a point in fifth grade that was kind of his peak where he was actually walking to school by himself, a 10-minute walk and was thriving.

Carrie M Holt
Before we continue our podcast today, here's something you should know. Hey, friends, we are so excited to announce our new book that's coming May 9th. The Other Side of Special: Navigating the Messy, Emotional Joy-Filled Life of a Special Needs Mom. We need your help to spread the word. You can join our launch team and get extra bonuses and fun prizes. For information, go to our website, www.takeheartspecialmoms.com and you can sign up for that. We'll Have the link in the show notes. Also today through April 24th, Goodreads has partnered with our publisher for a book giveaway. The link to that is also in our show notes. We hope that you enjoy this wonderful resource for special needs moms. Now let's get back to the podcast.

Jodie Pine
Then we moved to Indiana and things just started. There was regression and it was like God, what are you doing here? In January of 2020, we ended up finding out that he had brain cancer. The hydrocephalus in his brain was what was causing his symptoms: more toileting accidents, difficulty standing and walking. He was sleeping all the time. His memory was getting worse. I think one thing that really helped me. I started a two years Soul-care program with the Soul Care Institute. That started just before his diagnosis. We had six, four- day retreats over the two years. I think it was really during the first retreat where he was regressing, and I had just heard from his IEP meeting that they didn't know if he was remembering anything, and didn't know if they could actually keep them in his sixth-grade class at the middle school. They thought maybe he would need to go to the life skills class at a different school. I felt locked down by that. I'm not ready for him to not be able to learn alongside typically abled peers. I really wrestled with God at that first retreat. God, this is not how I would have written his story. I don't understand how you can be taking more away from him. The Bible talks about how we should remember. It's remembering God's goodness in the past and so much on remembering. He can't remember things. How can this be? How can there be life to the full that you promised for him. The retreats that we had were at Lake Michigan. You can imagine that, just with those waves crashing there as I was journaling, really believing that God was telling me the story was not yours to write. There is good in Daniel's story. He would give me faith. I think it was part of this shift that happened for me not feeling like I had to take on those big burdens myself to figure everything out for him of what he needed, how to provide it. Everything was so focused on his progress. If there's regression, then it's like I'm doing something wrong, I've got to fix this. I know we all feel this as special needs moms. There's like this huge pressure. God asked me, "What if you let Daniel be your teacher?" I think that was such a shift for me to feel like I can see in the way that he was walking this road. The courage that he had, that I can just appreciate that. Instead of it being my job that I need to fix him and I need to figure it out. God, what do you have me to learn from my son? How can I grow from him? How can he help me to see the world differently, even as we ended up going on the journey of the cancer diagnosis of chemo and radiation. 

I remember specifically one early morning in the hospital. I was laying on the couch there in his room trying to sleep and one of the nurses came in for her middle of the night check for his vitals. She asked if he needed anything, and he said, "Oh, well, maybe I'll have some pudding and Frosted Flakes." He ordered this in the middle of the night, and she brought it in. Then, of course he's wide awake and asking if he can listen to praise songs on my phone, which had become something he'd like to do. I gave him two hours of continuous praise songs he could listen to. As I was trying to go back to sleep, I saw him; he had his teddy bear, and he's dancing with the praise songs, and he's singing along. I thought, this is what life to the full looks like. Here I am thinking God's denied him, God's taken so much away from him. I'm so at a loss of how that can be a good thing. Actually, when everything is taken away, there can still be life to the full. That's the kind of faith I want to have. 

I guess your original question was about the practices. I think one of the big practices for me is just paying attention. I pay attention to him, and how he's seeing the world. One of the things I've noticed about him is that he's always looking for his reflection, or he's looking for his shadow. He waves to himself when he sees his reflection somewhere. It's like he's really in touch with himself. I think that's the way I want to live. This is where I am right now. This is what I need right now. 

About a year ago, he came and he was dealing with some anxiety. There was a lockdown at his brother's school the day before, and there were some family things going on, so his anxiety was up there and he wasn't sleeping. He came and knocked on the door in the middle of the night and said, "I'm feeling scared, I need a hug." I just thought, that's a great practice that he just taught me. He actually expressed a feeling and then what he needed. His way to articulate it, I guess, because he struggles with his ability to communicate and everything. He said it so clearly. I think that's so helpful.

Amy J. Brown
First ofall, it's so beautiful that the Lord said, "let Daniel teach you,' and we get these diagnoses or these problems, and we look at it with our rational mind. Here's how I'm gonna go to bat for my kid. Here's all the things. He's giving you a window. He is giving you a window into, I don't want to say it is more simple, but it's richer. It's not simplistic. It's a way of being and paying attention, and I think that's really beautiful. As special needs moms, we often look at what we can fix, instead of looking at it through the lens of wholeness. Instead of going, here's what can't do (that makes sense, because that's kind of how our brain works), but here's what you can do. Here's the wholeness that he has, and that you're allowing him to teach you that is really beautiful. The other thing I want to say is what you said about paying attention. I have said this before that in times when things were really hard at our house, I would jot down in my journal things that happened because when I would look back, I would think, well, the other kids got ignored completely or this thing happened. But when I would start looking at my journal, I'd see, oh, no, they did it. Here's notes of where I did things with them, or this good thing was happening. For some reason our mind seems to go to the lack, and to retrain our brains, and also ask God to help us have our mind go to the wholeness. That is game changing. I mean, you're still at the hospital with chemo and radiation, and middle-of-the-night vital sign checks. There's a wholeness to it that I don't think our society or even we think about; we just think about how to fix things. I think that is such a great opportunity to see how we can flourish in this journey; not that it's not hard, I'm not negating that. I'm not saying oh, it's not hard. Once you do that, it's not hard. It is hard. But there's a flourishing to it. That I think that's the path to it, almost, if that makes sensse. It's really beautiful. What other lessons has he taught you?


Jodie Pine
It was at his most recent IEP meeting. Now he's in high school, he's a freshman. Last year, he was in the life skills class in his eighth-grade year. I think that turned out to be really positive for him to have a class in that one, it was like six kids in his class. They were in the same room for the whole day, and so he didn't have to navigate a whole building. In his sixth-grade year he needed to have somebody with him because if he would go to the bathroom, he would come out and then not know where he had just been. He needs help to get back to a place; he needs to be redirected or reminded. We just had the IEP meeting with his teachers in the high school and one of the things that they do now that he's getting older is they'll ask him questions that then go into his IEP about, what do you want for your future? I think it's great to ask kids and they are more involved and there's a sense of decisions not being made for them, but they can be part of the decision making. I think the hard part is to ask, what do you want to be in the future when his answer is a doctor, or a teacher. Well, those things actually aren't possible. There's grief there for me. With my other kids, there was never a sense of  you can't do that, or you can't do this, or those are not options for you because of your disabilities or limitations, but with my youngest is. I don't want him to think less of himself because he can't do those things. For his brother, who's now 18, for the two boys living at home now. He just got his driver's license recently. Daniel would say things, "When am I going to get my driver's license?" I'm thinking, there's no way you'll be able to drive. to be out on the road, and remembering, which is the gas and the brake pedal. That wouldn't work. But I don't want to discourage him either. It kind of got to the point where he would say, "I don't think I want to drive, I think I would get lost. I'm like, yeah, that's probably good. You don't have to worry about it and can be just a passenger when other people drive. He's been the biggest encourager of his brother driving, telling him from the backseat, you're doing a great job. Even when I'm the one who's a little on edge.

Amy J. Brown
Yeah, that's the worst.

Jodie Pine 
Daniel's always been quite confident. He's a very big cheerleader. As I was reflecting on this IEP meeting, I came across this quote, in a book. It's a book called "This Here Flesh" by Cole Arthur Riley. She said, "Ask me what I want to be, but not before you asked me who I want to be. 
Ask me who I want to be, but not before you ask me the more searing question of who I am." God loves him just as he is, and there's not this need to change anything about him. I was rereading something I had written back in 2015 in a blog post called "Unfinished." It was at that time that we had gone through some different kinds of tests for him. He had a gait lab study to see if it could help with his walking. There was a neuropsych exam to see what was going on with his brain and  what might be able to help him learn better. There was a sleep study to see if it was because of his restless leg syndrome, he wasn't sleeping. Maybe that was affecting his memory, and maybe medication would help. As I realized these things, these tests that he was getting, there was this hope that there would be some kind of breakthrough. This medical discovery was going to be what would put him on a different track, and we would see progress after progress. That's what's coming. We found the answer. I think all three of those tests that he had kind of around the same time, yet nothing really changed. Even that neuropsych exam was really discouraging, because I went in expecting to hear more of how Daniel's brain is working. This approach would help him at school more. This would be how to tap into his specific way of learning. I think that the doctors I talked to, at that evaluation, kind of treated him like a case. It was focused on you ought to get him on a waiting list now for a group home when he turns eighteen, that kind of thing. It felt very hopeless. What it did for me was it exposed how much hope I was putting on some kind of breakthrough or being able to fix it somehow. At that time Daniel was running cross country in fifth grade. The fact that he could do that with his mobility issues. 80% of people with Spina Bifida are in wheelchairs. The fact that he is ambulatory is significant. There's an awkwardness to his running because of the way his legs work and everything. We were out on the cross country course, and he'd actually run a mile. I was talking with this other mom, and then my son ran by and her son came up, and he'd finished much earlier. He made a comment about his running and how he looked funny when he was running or something. I paused so I could hear how the mom was going to respond, because I had started to walk away before her son came up, and I wanted to hear how she was gonna respond to him. She said, "Yeah, but he's still running isn't he?" Emerson said, "yeah, and she said, "yeah, and that's the point." He is out there running. It's not how fast he runs and it's not what he looks like, when he runs it, he's running his own race, and that I can cheer for him not because of progress that he's making, but rejoicing in who he is. If there's that radical acceptance, and unconditional love, that right now, the way you are is perfect.

Amy J. Brown
You mentioned this before, I think two practices that you do, is you notice and name. I have found the practice of reflection. Noticing, naming and reflecting have helped me frame my mind and my heart and my soul, to where I really am. When I'm off to the races, trying to fix things, or when I'm looking at deficits, it's easy to forget where we've been. It's easy to also not name what we're feeling. We just keep going, we think I shouldn't feel grief. I think your personality and mine too, were prone to reflection; some people aren't. I think just naming and reflecting. One thing that's helpful is journaling this is what's true about today. Here's where God's met me in the past, and taking even a little bit of time to notice those patterns and where God has worked, and how He got you through. It's reorienting our souls to where we need to be. The second thing I want to say is that you get this image in my head of the neuropsych eval, and here's all the deficits. This is Daniel on paper, according to us. Then normal is the word we want to use, but wholeness is the word you're using. I think that's just a beautiful picture. They see the deficits, but because we're looking at his wholeness, he sees that in himself. I think that's such a beautiful picture of how God wants us to approach this life, special needs mom or not. It's so lovely to think about that. I get that. You get those reports. You read it all, and you want to do every single thing on it to make it all better. I love that whole idea that, as you said, "It's looking through the lens of wholeness instead of the lens of limitations," which I don't think we look at it that way. I think that's really refreshing and going to be an encouragement to our listeners. 

Jodie Pine 
One other thing I was gonna mention. Last year, I took a course with Joni and Friends, through Joni Eareckson Tada's organization; it was called Beyond Suffering. It was 16 weeks; it was an online class that I took, and it was getting a certificate in disabilities in ministry. Just going through that, and learning about some of the history of disability and a theological approach. A big focus of the course is on Luke 14. They call it the Luke 14 mandate, which is when Jesus said to go out and, and find those who are disabled and bring them in because they belong in my kingdom. That's a significant, essential part. That course was really helpful for me. Last summer, just after I finished that course, I was able to go with my boys to one of Joni and Friends Family retreats, which was on Lake Michigan. I felt like at that camp, it's a retreat, to be with other families affected by special needs in some way; 

Some of them were adults. They were not all kids along with their parents, but some were adults with older parents. It was such a family feeling. It was such a celebration of everyone. For people who would generally live in the margins, and during worship time at church there's the sense of maybe my child's making too much noise and being a distraction to other people. There is a sense of, this is an expression of worship that is embraced by God. This way of worshipping Him, God loves it, and to be in that kind of environment was so life-giving. I felt my cup sofilled, to be in a place where this is a taste of heaven being with these families. We had some small group times, with some other moms, and had some discussion about what our lives are like, and some guided questions with a sense of like, this is a room of heroes walking through really hard times. The theme of that retreat last summer was, "We have this hope as an anchor for our souls."  We were talking about that. One of the moms was talking about how it's when we're in the deep water, that we're able to find the treasure, down deep. We have to go deep to find it. Our special needs kids and the lives that we live, because of these special needs helps us to go deeper. We have to have that anchor. If not, we're tossed around by the waves by every new diagnosis or whatever it is that comes up to throw us off. If we're not anchored, we would be floundering. I wanted to share that because it might be something for people to look into. They have these family retreats all over the U.S. at different times.We'll be going back again, summer, and I'm looking forward to having that connection. This is a place where you don't have to come in with a sense of, how are other people going to see my child? When you first come in, they have the sidewalk lined with all the volunteers. Every child or adult with special needs gets matched up with a volunteer for the week to be a partner. All these volunteers that are there lined up on the sidewalk as each family comes in, and they're cheering. They ask before you walk down, "What kind of welcome wouldyou like?" So for kids who are overwhelmed by noise, they want a quiet welcome. People will kind of do more of the high fiving and less loud cheering, but it's designed to each child. They have these great opportunities of jet skiing and tubing and in doing it all in a way that whatever ability you have, they make it work for you. Those experiences that our kids might never have, they're getting to do it and really live that life to the full. One memory that I have, they had a dance night and Daniel loves dancing. It's one of his favorite things. It was a night that they had something else for the parents, but I came in and got to see the end of the dancing time. There was a woman who I think maybe in her 30s. She was in a wheelchair, and so her parents were there with her. 

She was nonverbal. Her dad was out there on the dance floor dancing with her in her whelechiar, and the spotlight was on her. He was just looking into her eyes and she had a big smile on her face. I had this feeling of that love that I could see in the father for his 37-year-old nonverbal in a wheelchair daughter was, this is the kind of love that God has for us. That's the kingdom. This is the kind of love that God has for us, and I was feeling overwhelmed by that.

Amy J. Brown
That's the kingdom. That is lovely. We'll put links to that in the show notes for our listeners. Thanks for bringing that up. For our listeners, who want to check that out, I think that sounds lovely and such a great opportunity for our kids. Thank you so much for this conversation. I know it's gonna be really encouraging to our listeners. Thank you so much for sharing. You can find Jodie at www.jodiejournal.blogspot.com. You can find her on Facebook at Jodie's Journal, and you can find her on Instagram @Jodiepine. All of our resources, including an entire written transcript of this episode is available on our website: www.takeheartspecialmoms.com. Thank you for joining us today.