Sep 28, 2020
- Peter Kline
I'm never doing enough, never doing enough of working enough with them and never doing enough therapy outside of therapy hours with them and knowing the importance of that, but also trying to manage the responsibility and guilt that comes along with that while also, also being clear on. But every day with him is a gift and every day is enough. That's it. It's it's holding those two things together that often feels very difficult, but that's kind of what we're given to manage.
INTRO
My guests today are Janice McRandal and Peter Kline. They are here to talk about their son, Leo, what it is like to raise him and love him as he lives with cerebral palsy. Cerebral palsy is the most common motor disability in childhood, it affects the ability to move and maintain balance and we will hear about how CP impacts their lives.
We also talk about baseball, rugby, sharks, and you will have the joy of listening to the particular lilt of Janice’s accent.
As always, I want you to know Peter and Janice as more than just their role as Leo’s parents. Peter and Janice live in Queensland, Australia and, when I spoke to them, they had just returned from a trip to the Barrier Reef.
- Janice McRandal
Oh, yes, just you know, it's one of the world's beautiful spots, so it was really quite a stunningly different experience to the pandemic apathy that set in to go our beautiful rhythm and just have these days in a day or two in paradise.
- Liesel Mertes
Are you snorkelers? Are you divers? Do you do some of both?
- Peter Kline
No, that was the first time I have ever snorkel.
- Janice McRandal
Oh, really? I didn't know that.
- Peter Kline
Yeah, I know. Never snorkel before.
- Janice McRandal
Oh, well that's the way to do it. That's the way it is if you're going to be the first time.
Peter Kline
Go. Go big.
You might have gathered that Peter is not a native of Australia. Peter was born in Houston. He traveled to Chicago, where we overlapped at Wheaton College for our undergraduate work. And, after marrying Janice, he moved to Australia where he teaches and works with young ordinands at the Charles Sturt University in Australia, a theological college that helps those seeking ordination in the Anglican Church. When he is not working, Peter enjoys a few hobbies.
- Peter Kline
When I'm not teaching. So I, I love to paint. That's probably the number one thing that I that I do when I find the time, which is difficult these days to sneak in time to paint. Yeah, that's what I, I love to make art and paint. So that's, that's kind of my main thing that I try to do outside of my professional life.
- Peter Kline
And I also I have also taken up or re-entered rather playing baseball. So, you know, moving to Australia, you know, you have to find ways to stay connected to your American roots.
Janice is also a theologian. As you will hear in a little bit, that is acutally one of the sparks that brought Peter and Janice together. Janice works at the University of Divinity and is the director of the Centre for Discourse, which does public theology. She, like Peter, also loves sport.
- Janice McRandal
So I'm a big lover of sport, so I am part of that clichéd Australian sport loving lifestyle. So I play by play sport. I play touch football, which is touch rugby, I guess would be the way to say it.
- Janice McRandal
I played that for twenty eight years, so since I was 12. So I just play weekly in a more and much more social team. Again, not super serious, competitive and I really enjoy that.
- Janice McRandal
I will only give it up when my body says I absolutely have to.
Janice also loves to cook
- Peter Kline
One of Janice's skills is actually to clean as she cooks. Yeah. So so it's often like to get to the end of a cooking session and you have this amazing, delicious, beautiful food and a clean kitchen here. And it's like what, what did you do that.
- Janice McRandal
It is my superpower in the kitchen. I am that rare cook that like is always cleaning as she goes. And there's nothing makes me happier.
- Liesel Mertes
And would you give us an overview of your origins story?
- Liesel Mertes
Did you get together?
- Peter Kline
Oh, the two of us? Yes. Yeah,
- Janice McRandal
Entirely by accident. Certainly not. Certainly not something one would plan for. So we both work in the same field in academia. We're both in backgrounds, in and teaching in theology. And we had connected over a number of things.
- Janice McRandal
I think we first met at a conference in 2012 and we had mutual friends and sort of knew each other in a very friendly way. And then a very good friend of mine was moving to Nashville to start a Ph.D. in the same similar program, same school as where Peter was at Vanderbilt.
- Janice McRandal
And I was I had about a year before going through a separation and divorce and was visiting her. And I knew a number of people through the theological world at Vanderbilt. Peter is one of them. And we had made plans to go for breakfast in a very you know, neither of us were at all interested in each other. It was just a great big accident that came upon us.
- Liesel Mertes
And do you remember expressly like that initial breakfast? Can you go back and think, you know, like, I got the omelette and I was just over bacon or.
- Janice McRandal
Yeah, yeah. What did you have for breakfast? Do you remember?
- Peter Kline
Yeah, it was the I know what I can see and picture it.
- Janice McRandal
I can remember the where I had to go to the Cuban breakfast is what it was called on the menu. Yeah that's right.
- Janice McRandal
And then Peter took me to erm I'm, I've got a high level of camp and I delight in weird awful things. And Peter turns to the, the Parthenon in Nashville, which I did. People kept saying to me, when you're in Nashville you should go to the Parthenon. I was assuming it was some Greek restaurant that people liked. I had no idea about this actual enormous structure replica.
- Janice McRandal
Peter took me to that and it was just delightful. And we jumped on the back of the elementary school field trip. Yep. It was just a fun, enjoyable day.
MUSICAL TRANSITION
– Janice McRandal
So, you know, after I spent quite a bit of time with Peter during that trip in Nashville, and then Peter came to see me while I was in New York.
- Janice McRandal
And just by chance, he was coming to Australia two weeks later to a conference I was organising. And we'd already planned as friends like in a purely platonic way, for him to come and stay with me and my home. And so at the end of both of these trips, we realized that we were falling in love. And what are we going to do now?
- Janice McRandal
So we did two years very, very long because, you know, people say long distance to our flights and we love.
- Janice McRandal
So it was a long two years.
- Janice McRandal
But we've you know, we've both been divorced. We didn't want to rush into anything. So we thought we did the work we had to do to make sure this was the right move forward for us. And then at the end of that two years, Peter moved to Australia and we were married. Woo-hoo!
Peter and Janice were married, twice, in 2016. They had a ceremony in Australia and another in Houston. Janice entered the marriage with two children, a son and a daughter who were six and nine. And Janice and Peter knew they wanted to have a child together.
- Liesel Mertes
How soon after you got married did you find out you were pregnant?
- Janice McRandal
Well, immediately. So I had just gone off the pill and we came back from from our second wedding. So we already had this first wedding, came back from the second wedding in America. And I was immediately pregnant. And we were really like that was in the first like we were very shocked and was far sooner than we had anticipated.
- Janice McRandal
But we're excited. Yeah. And then but I we had a miscarriage at eight weeks and, you know, it was really sad about that. And it was all, you know, been such a whirlwind. We'd just gotten married. Peter's moved halfway across the world and then that suddenly happened. So much had been happening.
- Janice McRandal
And so then we decided we would just stop trying for six months or so, for four or five months just to give us some time.
- Janice McRandal
All of us had fallen pregnant easily, so we would just give her some space. And then I fell pregnant again in the following, like six months later if and we had an ultrasound at nine weeks and there was no hobby.
- Janice McRandal
Yes. And that I would say that hit us much harder. Yeah. The second one. Yeah. And then we, you know, so I had to have surgery and DNC and the eldest two children were with us that day. There was nothing we could do about it. So it was all just it was a sad, confronting time and we felt very sad about that.
- Janice McRandal
So that was April, May, May when I had that surgery and what, twenty seven, three point thirty seven.
- Janice McRandal
And I think and now we're starting to feel a little bit anxious. And of course, you know this as a woman gets older, like for me, there is suddenly that internalized anxiety of like Peter to has not had his own children. What if I can't, what if, what if this becomes a thing? Now I start having repeat miscarriages and we kind have a baby. He's my, I'm three years older than him.
- Janice McRandal
So is he going to regret having married me? All these kind of fears and griefs and they weren't unspoken. We we we shared that with each other, but it felt a level of intensity around that which are many, many people in all sorts of different situations would relate to, I'm sure.
- Liesel Mertes
And then so much tumult in just this first stretch of being married, right?
- Janice McRandal
Yeah, a lot. Absolutely. And, you know, it's a second marriage for both of us.
- Janice McRandal
So you're so anxious not to get it wrong.
- Peter Kline
That's right.
- Janice McRandal
And there's so much baggage in history that you carry into that that you're trying to negotiate and not lose yourself. You know, that's a big fear for suddenly for us, I think. Would you say that after divorce?
- Peter Kline
Yeah, definitely and figuring out and carrying all of that and figuring out how to. You know, be the new family that we're trying to be both with Jesse and Penelope and trying to bring another child into that, it's just a lot, right, is just a lot of.
- Janice McRandal
And you've just moved and you just moved. Right.
- Peter Kline
So you're figuring out how to be married again. And and it's you know, it's a second marriage. It's just very different from first marriage. And so, yeah, it's it's just a lot. Yeah. Shorthold so then so then in August, so it wasn't very far.
- Janice McRandal
So obviously we didn't have difficulty falling pregnant. Then in August we found out it was the lowest.
- Janice McRandal
No, in October it was in October we found that we were pregnant with Leo. Yeah.
- Janice McRandal
Yeah. And we were nervous. We were scared and anxious. The first three months I think I had about four or five ultrasounds and I was having all sorts of symptoms.
- Janice McRandal
It actually like there were real symptoms. But I think the biggest symptom was my anxiety.
- Liesel Mertes
Absolutely, after having those losses, just I I imagine it would be very easy to be overshadowed by the uncertainty, right?
- Janice McRandal
Absolutely. We were. Just hoping and praying and biding time. But once we got there, I think once we got through that three months, we definitely. To level, you know, as much as we could calm down and feel excited and happy and secure and looking forward to having a baby together
Janice and Peter are happy, expectant. They are eight weeks away from Leo’s due date. Janice was lecturing at the college and Peter left to go and hear an Australian author, Tom Winton, talk about a new book release.
- Peter Kline
And I had traveled how many hours was about two to two and a half hours across state lines and then it down into New South Wales from Queensland to go hear him talk about his new book. Janice started feeling
- Janice McRandal
Well, I guess I was having contractions then. I was in complete denial about that.
- Janice McRandal
I rang the hospital and said, I'm very sure I'm not having a baby. But and and then the I guess the midwife I spoke to said, well, well, I really think you should come in and maybe you should come in. So but Peter was not at home. I rang him and I said, yes, that's right.
- Peter Kline
I think what you I think the first text you texted me was, you know, don't don't panic. Don't worry, the baby's not arriving, but I'm going to the hospital just in case I think was your first to and I was like, this is not good. So as soon as I got that text and realised that she was on her way to the hospital, I just left, right and left where I was and started driving, driving home.
A friend takes Janice to the hospital as Peter is rushing home, racking up speeding tickets from Australia’s camera monitoring system. Meanwhile, doctor’s are trying to slow down Janice’s labor, she will need a C-section.
- Janice McRandal
So I made that spinal block. They could they failed it. Three attempts to get this one block in, which is very unpleasant for me. And, you know, I'm having these very regular contractions, but it's slowed down the process significantly. And Peter made it clear, was being brought like into the operating theatre at this point.
Janice McRandal
When we when Peter arrived and I walked into the operating theatre and within five minutes, Leo had arrived.
- Liesel Mertes
Yeah, that's so intense for both of you.
- Janice McRandal
It was very intense. Like Peter arrived into, like, you know, a mess of adrenaline. Yeah.
- Janice McRandal
Because he's come speeding along this freeway thinking he's not going he designed himself to not making it.
- Peter Kline
But yeah, I thought that kind of halfway through I was like, oh, I don't know if I'm going to make it. And I had to turn myself in. So it was a little bit, you know, OK, I had to go through my sort of mini even grieving process as I was driving as I go into the with the birth of my child and OK. But I just hope he's OK or, you know, so all that kind of stuff,
Because Leo has come eight weeks early. He has to initially go to the NICU. But he is strong and moving and is soon moved to a special care nursey where he has to stay for the next four weeks.
- Janice McRandal
So you have to adjust rapidly. And for the first few days, I was just in shock. You know, I didn't believe I was having a baby. And suddenly there was a baby and that also had a mother, a third C-section. And I'm just about to turn 38. And I was just deeply in shock. But then you you have to rapidly adapt. And I have to start expressing milk, which is the liquid gold, trying to get that in.
- Janice McRandal
And and the pressure in Australia public hospital system, the special care unit, they have milk banks donated breast milk. Also, the research shows how beneficial this is for especially premature babies. But they will they is a very limited supply. So they will only provide the milk. A premature baby needs up to thirty six week gestation. Then they have to cut them off. They just don't have enough.
- Janice McRandal
They need milk. So there's this immediate pressure placed on you. You need to get your milk supply in and be producing enough to to be feeding this baby by thirty six weeks and providing all the nutritional need to. That with them was the immediate pressure on me. OK, I've got to be expressing milk constantly and it was just a surreal kind of, you know, you adapt immediately to this program. And we were both, you know, routine of getting up in the morning going, spending the day at the hospital, doing his cares, as they call it, changing him, nursing him and doing skin to skin as much as possible and starting to teach him how to suckle on slowly doing that and then going home.
- Janice McRandal
And as you know, every three hours expressing that just became a routine for four weeks. Yeah, I think I that's a strange, surreal, exhausting routine.
- Janice McRandal
And we were moving because we, like many idiots, had planned to move four weeks before he was going to be born. So which actually meant around the time he then was coming home, we were moving. Yeah.
- Janice McRandal
So it was like and then Peter got poisoned so severely he had to go in an ambulance line hospital.
- Janice McRandal
It was just it was a difficult time.
- Liesel Mertes
That I in my experience with being in the NICU or having to not not me, but having a child in the NICU. You know, as you were talking, the word that came to mind was totalizing. You know, it's just I felt that it was amazing how your world just. Is encompassed in this building walls and that these other things that, like I had been doing previously or caring about and, you know, even like moving and it just, you know, just the reality of being present there with your child seems almost overwhelming, let alone trying to incorporate any other need or reality out of those walls.
- Janice McRandal
Yeah, no, this is it. But you would come home at the end of the day and the home was suddenly this strange alien place. I didn't care about it. I'm just going to drop everything.
- Janice McRandal
Eight, go to sleep and get back to the hospital, like maybe three hours later.
- Peter Kline
Yeah, that's right.
- Peter Kline
Yeah, it's true. It is a totalizing experience in space. And I mean that what that makes me think of is actually where we ended up leaving and going home, which is this joyful thing. You finally get to bring our baby home.
- Peter Kline
But remember this. Great. Like sadness, leaving, leaving the hospital. And it's a strange experience because you're both happy to be finally leaving and you're leaving is good news. But at the same time, it's this this has been your whole world.
- Peter Kline
And also it's been our whole support network. It's been our whole lifeline. It's been our hope for for you know, I mean, a month isn't a long time. But when you're, you know, going through something like that, it is a long time. It's just it's a life altering adapted quickly. It's a life altering, transformative space you've been through. So it's like you're having to say goodbye to all of that all at once. That was an overwhelming experience of itself.
- Janice McRandal
And this child that you now have deeply bonded with very quickly, you can't remember when they didn't exist has never been outside of these walls.
- Peter Kline
Yeah, that's right. And is and has never been outside like a very extensive team of doctors and nurses caring. And now it's just OK. Well, it's our responsibility is the whole world.
Liesel Mertes
You had your own expulsion from a womb like setting up.
Peter and Janice go home feeling confident and optimistic. Leo had done well; he didn’t have substantial complications. However, Leo had to be readmitted several months later. He was not gaining weight or meeting expected milestones.
- Peter Kline
What does that mean, we don't know, is it just because he's or is it just because he's premature and that he's just developing a bit slower and there's the whole, you know, kind of corrected age thing when they're they're kind of age, but then they have this corrected age.
- Janice McRandal
So you can be corrected. But he wasn't quite getting the correct age milestones.
- Peter Kline
So it's all it's it's it was all that. And and, of course, you know, within a like within a relationship, a parenting relationship, I mean, in any circumstance, parents interpret their children differently. But there's like, you know, I feel like we had different just a different interpretative lenses. Through what, through what to kind of interpret what's going on. You.
- Peter Kline
Yeah, because Janice has had two kids before, and so she knows about what a typical developing kid looks like and I haven't.
- Peter Kline
But I also think Janice was more quick just to say I think something's wrong here. I think Leo is not developing. And I think I was slower. Maybe I was I don't think I was in denial about it, but I think it was just slower coming around to OK, yeah, there is something
- Janice McRandal
And I process trauma really quickly. That's why I saw myself in the deep end. So I guess it's the personality type. Yes. Like. That's one way I deal with with trauma is by naming it as quickly as possible so Leo would eventually be diagnosed. I even said that at three months, I think that he might have cerebral palsy. Yeah. So, which probably at that stage seemed very premature pronouncement, but that is certainly how I deal with that.
- Liesel Mertes
That was the force of your gut and intuition. Yeah. Yeah. How how old was he when he officially received the diagnosis of cerebral palsy?
- Peter Kline
How old was he?
- Janice McRandal
Was he he was he was quite young. He was 10 months old. Well, 10 to 11 months old. And he had been admitted to hospital when he was seven months old because he's weight had, you know, he'd gone from starting at the sixtieth percentile to under four and negative into the negative.
- Janice McRandal
And he was clear at this point, they're starting to use the language of global developmental delay.
- Janice McRandal
So this is a very, very floppy baby. So very low tone. So he'd never, you know, rolled over. He still couldn't hold his head. He couldn't hold his head up. He was, it was like he was a one month old, really, for the largely for the first year of his life.
- Janice McRandal
So he was admitted and they decided to put an NG tube back in which he'd had in the special care unit to get his nutrition up. And that had that he'd be we'd been in the hospital for two weeks in the initial round of trying to get his weight on and begin a diagnostic process. And Peter has a nephew with a mitochondrial disease. And so there was a high level of concern around genetic, very serious and potentially life ending genetic disorders for Leo.
- Janice McRandal
So in that first round, we'd gone through this process of testing for all the big scary things like Mito, Fragile Z, Prater-Willi.
- Janice McRandal
So he'd had comprehensive testing very early on and we'd seen really the best pediatric pediatric geneticist in this in the state very early on and eliminated those things. So there was a certain relief that came with that, like certainly we'd gone from the worst. What might seem, I guess for many people, the worst case scenario to something that some that's you know, it's all relative. Some starting to talk about CP seemed much at that point. I think a bit of a relief.
- Liesel Mertes
I just imagine that there's such a profound. Level of what is being asked of you on like an emotional and physical level, whether that's, you know, presently or back then, that for people that have children that don't have, you know, developmental delays or things like that, like that, they can't quite fathom just some of the dailiness of what you're having to incorporate along with this overarching kind of emotional like uncertainty.
- Liesel Mertes
I might be wrong about that, but if any of that sparks something in you, I'd love to have either of you or both speak about that yet.
- Janice McRandal
So definitely I think that around the time of Leo's diagnosis, I was I was not up for this. Like I had had such a traumatic year since his birth and I had not recovered well from the C-section, multiple infections. And his feeding was absolutely erratic. So even when he had the energy to put back in at seven months, Leo was constantly on the breast, sometimes going with just 20 minute breaks and he never slept. Occasionally he'd sleep a two hour span and that would be it.
- Janice McRandal
And I had two other children to care for their own needs and was constantly feeding this child or he was crying, needing, settling. And so I think by the time it got to around his diagnosis and there was late before, it's really an unknown future.
- Janice McRandal
I was I was not up for this and probably I was depressed. Probably I had some postnatal depression. And so I say at that time, there was enormous pressure on Peter. I like feeling that I'm on the brink of maybe not being able to, like, go on, which I don't think was the case, but that feeling was always there.
- Janice McRandal
If not, I can't do it anymore Peter I can't do this and I go to sleep. I was so exhausted.
- Peter Kline
Yeah, I mean, for a good I mean, over a year, it's just like you're living on the absolute edge of your resources, like emotional, physical, cognitive. It's just like you're just have to set up camp there, right. Yeah. And it's it's it's just overwhelming. And I think my like remembering back, like I associate like so much of this around, like the physical symbol for this is Leo's NG tube, his nasogastric tube, the tube that goes into his nose and down into his stomach, just having to manage and deal with that.
- Peter Kline
You know, it's a tiny little piece of plastic, but it it just caused so much stress and trauma. And, you know, because you're having to take this thing to your child's face every day and it comes off of a day out at least once a day on average, once a day, pull it out. And at the beginning, we had to go to the emergency room every time to have it reinserted. Eventually, I learned how to put it back in myself, but it was just a trauma.
- Peter Kline
But it's just like a traumatic experience every time it comes out and you have to put it back in. And and just the constant anxiety around, I mean, just the weight and nutrition you're having to keep track of. But then it's just a, the constant, like constant monitoring for him not to pull the thing out or to keep his hands away from vomited every time he nearly in tears.
- Janice McRandal
Yeah. So it's it's just, you know, it's just like it felt like there was never a moment in which you could just. Let your baby be right, you know, or enjoy your baby or enjoy it, just this concept.
- Janice McRandal
Yeah. So, yeah, it was tough. So I didn't know if it's a case of, like, what's being asked of us is too big right now in terms of a lifetime.
- Janice McRandal
So we're just going to keep struggling along day by day. And that really the turning point was when after some MRI's and various brain scans, the hospital decided we could do something about sleeping and sleep clinic where we rapidly weaned him and got him off the breast and he started taking some melatonin. And yeah, within a month or two, he started sleeping. And that was a major turning point for us. He's about 15 months old then before.
- Liesel Mertes
That is a long time to be for him to be, you know, not sleeping well and a long time for you guys. All right. I can imagine how that would feel like a very profound turning point.
- Janice McRandal
Well, it's probably more, I should say, is probably more of a turning point for me, because I think I had I was so utterly exhausted.
- Janice McRandal
It was at that point I said, right, Peter, you're up. I need to sleep for a year and you're up. And I do think that's right. That's right. Just and that's what was needed is appropriate. But it is probably more of a turning point for me.
- Peter Kline
Yeah. Because you could in a way you could let go of. Of certain, to a certain degree, certain tasks and the constancy of certain tasks around caring for Leo and it could transfer to me in a certain way. So, yeah.
- Janice McRandal
But also, it's a major turning point for Leo, this poor child gets what he desperately needs, sleep, sleep. So. And, you know, three or four months after that, he actually started sleeping. He had a surgery to have a peg inserted tube, which in Australia happens far more even then after having an NG tube for a year, almost a year was soon in Australia.
- Janice McRandal
So I know in America, friends and relatives, pigs get put in after for six weeks, even even up until a year in Australia. They're reluctant to do that as a permanent move. So we had to really push to have that put in. And that really was the final big change for Leo that he hated this to be pulled it out every day and then we'd have to pin him down again. And and that was just a great relief. And he's been such a happy little boy since, like, it's like a different child since birth, to sleep and getting rid of it and the NG tube.
- Janice McRandal
Yeah. And he became happy and we finally could delight in him and enjoy at that time together and which hadn't really been that possible up until this point.
We will return to Peter and Janice in just a moment. But we need to take a quick break to acknowledge our sponsors. The first is FullStack PEO. FullStack is a full-service benefits firm here in Indianapolis. The specialize in helping small business owners and entrepreneurs navigate tasks like payroll and open enrollment. Their talented team skillfully handles all of those details, caring for your people so you can grow your business.
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Now, back to my conversation with Peter and Janice…
- Liesel Mertes
Tell me tell me a little bit about September 2020. Leo, what are things that you are especially enjoying about him this month?
- Peter Kline
This month. Yeah, we let's see. Well so many speech, so many things. So, so he's come this year. He's come a long way with his speech. So he's he started babbling this year
- Janice McRandal
A few months ago really like using consonants and vowels.
- Peter Kline
And so he's still not you know, he's still not anywhere near, you know, words or that kind of and he may never get there. We don't know. But just in terms of his vocalizations and ability to express and communicate things with,
- Janice McRandal
I'm pretty sure he said hi to us a couple of times this week. The three walked in from work. Hi, Leo. And he said hi back.
- Peter Kline
Yeah. So that's the delight. Yeah.
- Peter Kline
So that's that's been wonderful. It's wonderful to see his. Ability to do like his physical development and ability to play with things, and even just yesterday he was able to put together successive rolls and roll halfway across the living room to go get a toy that he was wanting. And that was just wonderful to see. You know,
- Janice McRandal
I guess we're really starting to see his agency. Yeah, it's interesting that we haven't previously and it's such a big broad, CP is such a big, broad, questionable diagnosis that it doesn't give you any sense of where you're heading or what might be the future for you.
- Janice McRandal
So it's like discovering all the time, ever, any time something new develops. Oh, and he can do that now.
- Peter Kline
Yeah. Another another big thing is his eating. So we're actually currently in the midst of trying to wean him from his feeding tube. So this is another big weaning process. So it's both it's both a kind of new stressor, but also another source of delight to really kind of see him picking up his ability to eat orally. So so we're kind of slowly reducing the amount that we put through his tube to try to encourage him to be able to gain his oral appetite.
- Peter Kline
So and he's been doing overall, he's been doing really well. So to see him have a new relationship with food, be able to enjoy food, to be able to figure out what kinds of foods in particular he likes. His ability to drink, you know, so that's, you know, to drink water and liquids and like
- Peter Kline
So it's so it's really it's just a lot of these very simple, basic developmental things that with Leo are stretched out. And and very slowly emerging, but it's it's just delightful to watch them absolutely happen across this very long, slow timeline.
- Janice McRandal
I mean, I feel like we've jumped stories because we're now smiling. Our energy is picked up. It's like when these things occurred, we're almost talking about a different child. Like he was so hungry and tired for so long he couldn't emerge from himself.
- Peter Kline
That's right.
- Liesel Mertes
And Janice, you mentioned some of the uncertainty within a CP diagnosis. How have you two, and I imagine it's like, a becoming not something that you've just figured out, but what what is important for you as you orient your own expectations and your parenting within some of the uncertainty that CP brings things into your family?
- Janice McRandal
Yeah, I guess, you know, some of that happens on a theoretical intellectual level. You know, we're both academics. I'm just stopping somebody at our front door. We need to oh, we're having mandatory fire extinguishers, which are. Hello. Sorry. No, that's fine for me to do it if this is in the background. Did you want me to go? Are you happy for me to continue this a little bit of noise in the background or do you want me to wait? How about you continue and if at any moment it becomes intolerable clamor, I will cause you OK? Yeah. So I think some of that happened on a theoretical level of thinking through, well, what does what does it intellectually mean to to think about disability? And both Peter and I in scholarship have, you know, read from disability studies in the past. So it's there not unknown theoretical questions to us, but also thinking through as parents.
- Janice McRandal
What does it mean to, to prioritize certain forms of development, for example, you know, like one of the things around this idea of what if my child never says mommy, like, what would that mean to me? And would that be a lesser that be a grief because who he is is not enough? For example, theoretical questions around that.
- Janice McRandal
But the, but the big emotional grief part, I think, and this is something Peter and I have talked about a lot, is really it's largely suspended because we don't know what we're grieving at any given time. We don't know what what will or will not emerge or happen for Leo at this point.
- Janice McRandal
We don't even have great indicators. I mean, we know that it's very unlikely, for example, Leo will walk unassisted ever. That's really that's that's off the table. But we don't know to what level he'll be able to. self-propel in a wheelchair, for example, the walker use a walker, we don't know.
- Janice McRandal
Speech, again, as Peter said, is unknown. And even even where his cognitive ability is that we're a long way off really being able to have maybe four or five or six, we might have a better idea around that.
- Janice McRandal
But so it's a real. It's an unusual. Way to experience grief in that if it's an unknowing, it's a grief, it's an unknowing grief. So that's something where you come up against.
- Janice McRandal
He'll do something. And he started babbling, Peter said. And some of that babble is saying, Mum, Mum, Mum or Dad, Dad, dad. And it's only very occasional and it's not it's it's not really directed at us. But even to hear that sound and it's very emotional experience. And and so then you suddenly aware of all this grief that you had suspended somewhere in the air and you didn't know you were doing that.
- Peter Kline
Yeah. So it's it's unpredictable and it it hits you in unpredictable ways. And both I mean, I would say both the sort of both the joy and the grief of parenting. Leo, it unfolds in that kind of slow, unique time of itself, right? Yeah.
- Janice McRandal
And it's so important for us to be able to hold that and care for that, but also to foster a relation to Leo, where he is always enough, wherever he is in any given day to to find a way to hold both of those things and give loving care to both of those things.
- Janice McRandal
And they're the kind of conversations we have of how do we make room for all of that.
- Peter Kline
And it feels part of the difficulties that Leo currently has a lot of therapy every week, you know, four or five therapy sessions every week with physio speech, occupational therapy. So it's a lot of this, you know, early intervention therapy working really hard to maximise this window of neuroplasticity to potentially allow him to develop as much as he possibly can. So there's this big emphasis on doing all of this, getting somewhere really and progressing.
- Peter Kline
So and it's it's often I find it often difficult to feel like fully throwing yourself into that, which brings with it its own sense of guilt. And I'm never doing enough, never doing enough of working enough with them and never doing enough therapy outside of therapy hours with them and knowing the importance of that, but also trying to manage the responsibility and guilt that comes along with that while also also being clear on. But every day with him is a gift and every day is enough.
- Peter Kline
That's it. It's it's holding those two things together that often feels very difficult, but that's kind of what we're given to manage.
- Liesel Mertes
Now, how do you how do you help? Like both express to Leo and also express to yourself those moments of this is enough, like what does that look or feel like to you?
- Janice McRandal
Yeah, I think one thing that's become more accessible for me at least, is talking to Leo and and talking to him in meaningful ways and feeling a sense of there's a window of communication that's definitely opened up, that that's a way of relating between us right now. So I'm able to talk to him and and he's able to communicate back to me in various ways. And that is just become such the last few months that that's opened up. It just feels like such a precious, beautiful gift and a way of us being present together in any given moment.
- Janice McRandal
And it always feels enough. So I you know, it takes some time with people with disabilities to figure out how we going to communicate to each other because not him. May I come with all these assumptions about how that's going to work and happen and I have to break some of that down and learn new ways.
- Janice McRandal
So he's been teaching us how to communicate with him and now that's opening up. And really, it's it feels like a very beautiful gift that allows that mode of being together.
- Peter Kline
Yeah, I mean, it is just about finding ways every day to communicate the just the joy and enough ness, if you want to put it like that, of just being together. I mean, even even even in terms of the therapies that he has every day and his therapists are wonderful about this. It's all about making those those experiences playful, joyful experiences and and never, you know, and it's it's again, it's a balance between trying to push him in certain directions, but then also never thinking that you are expecting or requiring him to do anything at all.
- Peter Kline
So it's about opening up spaces of playful opportunity to explore what he can do. And then what he and what he can do is wonderful, whatever that is. Yeah. So it's it's it's. Yeah. And just being with him in that, you know, just being just the, you know, just the sheer being with is enough.
- Liesel Mertes
I feel like you're giving voice to what is an underlying reality and tension that is woven throughout any parenting relationship, which is, you know, how are you orienting with your expectation towards your child? And, you know, for people who have children who are not affected by disabilities, there there's this whole level of expectation that we feel like is, you know, societally or, you know, from a family level like these are right expectations that I need to have. But I will be pondering your words because I think that just the delight in being with someone just for who they are in that moment is actually such a full hearted gift that we are seeking in any relationship, but often so withholding and how we actually give that, especially to a woman, you know, in our preoccupied and frantic state of how parenting can be.
- Janice Kline
Right. Absolutely. And I think that, you know, one of the things that and I you know, people with disabilities are not here to teach us lessons about ourselves. And so we have to go through that kind of thinking. But I think that one of the things I've experienced with Leo that I have not yet learned how to do with my other children is to get off myself, you know, to start projecting, as you said, my expectations or transference of or repetitions of all sorts of material onto my other children.
- Janice McRandal
I think I experience that in a very different way with Leo. You and not me. And I am not you. We are two people that can actually be together and that opens up a whole the whole possibility of relation, and that has been at times quite wonderous. Hmm.
- Liesel Mertes
I imagine in this journey you have needed the support of a community of people as you think about some of that intense, you know, first year where there was no sleeping and marginal eating into the stage that you are now. What have been some of the best ways that people have come alongside you and supported you in your journey?
- Janice McRandal
Yeah, I think we mentioned when the weekend or the weekend before Leah was coming home from the special care unit, we were moving. So this is certainly memorable. Peter's colleagues and maybe some of my colleagues I can't remember, and also students of both of ours moved out like they moved our home.
- Janice McRandal
They moved all their stuff and unpacked the cupboards in the kitchen and put together new furniture that we had purchased. And friends came and painted bedrooms for the older two children so that it would be special for them. So that was like that was a big mammoth effort that was such a practical help for support. The other memorable and very helpful practical things we had.
- Janice McRandal
I mean, we must have had 100 meals cooked for us in the first year of Leo's life. I'm not exaggerating. A whole village just kept turning up to provide food for us. And that was super helpful in just a practical way to relieve the tension of those kind of daily tasks that seemed insurmountable, I would say. What do you think of Peter in terms of the support network that we experienced?
- Peter Kline
We had some friends once pay for cleaner to come for a whole day here. That was wonderful. Yes, yes, yes.
- Peter Kline
It just yeah, there's all that all those kind of practical necessities of just getting through the day and getting through the week and getting through the month. I think we were very grateful to have a nice community around us. Right. And then I guess there's just the there's just also the. And I would say, then it's the kind of circle of people then reduces, in terms of the people who can actually simply be present with you in more intimate ways about what's unfolding or what's going on, so, yes, they're probably key people in our lives who are, in various ways, able to simply share with us.
- Peter Kline
And again, just even just again, it's about just being with. Right? In some ways. Just being with us, with us and what's what's going on. That's that's been super, super important.
- Liesel Mertes
Hmm, what you manage that you mentioned, that smaller circle of people who are equipped to do that, which perhaps is a sideways way of easing in to the follow up question, which
- Liesel Mertes
What are some of the things that people have done that have really set your teeth on edge where you think, oh, my gosh, like, just don't do this?
- Liesel Mertes
If I could warn somebody off of these actions, these are bad ones or words.
- Peter Kline
Yeah, I mean, there's been there's been a few, like, super unhelpful, upsetting, just like comments about about what Leo is going through, but we're going to be the one that sticks out in my mind is when we're right in the midst of of going through these hospitalizations with Leo and these worrying worrying about Leo's weight. You know, just like I think we received one comment about some a person said, oh, I wish I I wish I had that problem, meaning the problem of not gaining weight.
- Peter Kline
Right. So, you know, it's it's like a at the time it was like a throwaway line, but it's one of those lines that end up like jabbing you and staying with you. And both Janice and I in various times just randomly will think back to that and just get upset about it again. Just this year, really.
- Janice McRandal
And there were four or five people in our lives that continue to say this over and over. Is he'll get there. This child is not developing, I know something's wrong with started talking to the doctors. We're you know, we're trying this, his nutrients are being boosted. We're trying this. And people that just kept saying "You'll get there in the end, they all do. They all get there in the end", which, you know, is patently untrue.
- Janice McRandal
Right. Not every like clearly that's untrue. And too, you're not hearing me. I wanted you to hear me in my pain and anxiety and fear right now. And, in order to make yourself feel better, you're just dismissing what I just said.
- Janice McRandal
That one, it's still wounds me and still hurts me. These people, you know, the people that are still some people still in my life for professional reasons that I that just kept saying it over and over.
- Janice McRandal
And it feels it feels very disappointing that that's the way they approached us. Yes.
- Liesel Mertes
Yeah, and a profound sense of of not being heard and also just thinking exactly what you said observationally, that's not even true, right?
- Janice McRandal
You actually, surely you know, that's untrue?. Like why? You know, so that was really that that was a source of great frustration. And it feels like, you know, a relationship look like, I don't know, I can ever get past that. Now that you kept saying that to me and I know it was more about you than me, but that really says to me we're not in the same mode of relating to each other.
- Peter Kline
Yeah. Or that this particular challenge that we're going through is not one that you either want or can just travel with me through, right? Yeah, yeah.
- Janice McRandal
So, you know, I think there's all sorts of people that said silly things that they regret, but they don't linger. Yeah. It's the people that just repeatedly found ways to dismiss you one way or another or to minimize or to extrapolate these hopeful future that everything was going to be OK. Yeah.
- Liesel Mertes
If there is anyone listening who is in the midst of their own journey, whether it's cerebral palsy or a different diagnosis, that has caused them to have to reckon with a life that they would have with their child, that is not accessible and no one wanted it. What words would you offer to that person?
- Janice McRandal
Well, I guess I would. I guess my first thought is about any and all feelings of thoughts are OK.
- Janice McRandal
I hear that, like you, there's no right way to process through these griefs. And there's no. There's no feelings of loss that are shameful and there can be room for holding all of that. So, you know, I think we come into these experiences never expecting them even the most. The person who's thought through all the scenarios, you still there's never a deep level of expectation, there's no way there's no playbook on how to navigate it.
- Janice McRandal
That and I mean, the follow up to that would be to talk to a good therapist, talk to somebody like that, make and find a space somewhere where all those that emotional material can come to the fore and be given attention and held and cared for.
- Janice McRandal
And one of the things we noticed when there was in the special care nursery is all the women. Typically, it's mostly heterosexual couples, not it's a very normative sort of situation in there. And all the mothers would find each other typically in the room where they were expressing milk and tell their stories and grieve together. And the fathers would sit alone in the room and didn't know how to find each other.
- Janice McRandal
So I think especially if you're in a in a, you know, heterosexual relationship, that especially men need to find ways to to talk and gather and tell their stories.
- Peter Kline
Definitely. That would be one thing that stood out to us. That's it's something that I'm still still working through. But what is it what does it mean to have a support network around us and around me and around Leo? So, yeah, and that's what I would say is like, just be super intentional about building a support network that is not just like it's not just adequate, but that's that's really good.
- Peter Kline
And I'm thinking in terms of I think of like the therapists that we work with weekly and daily, in terms of doctors, I think in terms of friends, I think there are they're really, really wonderful people out there that can form a support network, that can turn parenting a child with disabilities into like a joyful experience and not just something that you're having to suffer through, although there is a suffering through.
- Peter Kline
That's part of it. But that's that. So that is part of making it a a flourishing experience. And I think that those people are out there, those particular therapists out there, those are there. And sometimes it takes a while to find them or to piece it all together. But I think it's possible. So I think just always pushing to. For a kind of quality of connectedness,
- Janice McRandal
yeah, I think it's super important and also make sure that you're always working towards health care and disability services for all.
- Peter Kline
That's right. That's right.
- Janice McRandal
So we live in a country. That's right. And that's I would also say that, you know, like just, you know, growing up in America and moving to Australia, you know, and we have a it's called the NDIS, the National Disability Insurance Scheme. It's not perfect, but it's it is part of Medicare as a part of the universal universal it. But it is a huge support, you know, gets funded through that in a really wonderful way.
- Janice McRandal
So everyone should be able to have equal access to choosing the therapeutic and medical teams that they need for a therapist with a disability or it's somebody in their family. So, yeah, there's all that look self care, but also fight the good fight. Stage a revolution.
- Liesel Mertes
That's right. Yeah, I hear that the level of of advocacy that is still really important in that. Thank you for giving voice to that. Thank you. This has been such a full conversation, is there anything that, again, thank you for? I realize that the gift of anyone's time is one of, you know, the kind of things that they can give.
MUSICAL TRANSITION
Here are three take-aways from y conversation with Peter and Janice:
- Be very careful with clichés and looking on the bright side.People toss out trite phrases because they, themselves, are profoundly uncomfortable with pain. And we rush people to a good conclusion because it makes us feel better. Janice and Peter both commented how painful it was to have people assure them, again and again, that everything would be just fine with Leo.
- There is a particular need for men to find and experience uplifting, emotionally accessible community as they go through hard times.This is a need for women as well but, as Janice mentioned, women are much more prone to find each other while men are off on their own. If you are a man listening to this episode, think of someone in your circle who is going through something hard. Give them a call, send a text, check in to see how they are doing and offer support.
- Support is both personal but there is also a structural aspect of supporting individuals and families that are not given equal access.The level of care and intervention and support services that Leo needs is large and expensive. And we need systems that make those services available and accessible. If you are interested in joining your voice to advocacy afforts, I have linked the Arc and the American Disabilities Advocates in the show notes.
The Arc: https://thearc.org/
American Disabilities Advocates: https://www.hrw.org/topic/disability-rights?gclid=Cj0KCQjwk8b7BRCaARIsAARRTL4kp445XLphPJlLKnomC3_s7JmukNkrcCBTZLAOIi0upuyJppuywdIaAt8cEALw_wcB