The journey, grief and joy of parenting a child with complex needs with Anna Pawlowicz

0:02Hello, welcome back to another episode of Where Did I Go? The podcast for women in the messy middle of modern motherhood. That's actually becoming a real tongue teaser. I should probably find a catch line that has a few less M's and W's in it. Anyway, today I'm delighted to be talking to Anna Pawlowicz. Anna's life looked like so many others. A fulfilling career, a happy family, one son at home and another on the way. Then Anna's lovely second son Matthias was born with an ultra-rare genetic condition causing lifelong disability, followed later by an autism diagnosis on top of that. Obviously, through this experience, absolutely everything changed for Anna.

0:49She quickly learned that parenting a child with complex needs reshapes every single corner of your life, your identity, your marriage, your friendships and definitely your career. She became case manager, researcher, advocate and round the clock caregiver almost overnight while somehow still showing up professionally. It's a kind of invisible labour that she says transforms absolutely everything. but Anna's journey didn't stop there it became a profound reckoning with her own fears about disability and the deep stigma that that holds in society that transformation led to Anna founding Humankind which is a Copenhagen-based consultancy redefining what inclusion actually means not just for employees who happen to have additional needs but for the growing community of parents navigating life with children who also need a little bit of extra help.

1:47So in this episode, Anna and I are going to explore what it really means to parent a child with complex needs, how that experience reshapes life, and why this rising generation of parents is forcing workplaces to reckon with a community that they have long overlooked. I'm so, so honoured to have Anna here today to share her story. If you're raising a family with additional needs or simply want to better understand the reality of people who are, this episode is for you. Grab a cup of coffee or a tea or water, whatever you need, and let's dive in.

2:26Welcome to Where Did I Go? Thank you so much for joining me today. Well, thank you for having me, Tani. It's a pleasure to see you. I'm really, really excited to have this conversation with you because I think so far in the episodes that we've covered, it's been very much focused on a fairly typical scenario or a typical family setup, which, as you know, has emerged over the last 10 or so episodes is challenging enough. Like it's really hard, even when everything is right in inverted commas or the way it's supposed to be, that's already really hard. And what we haven't covered is any of the scenarios where there are additional challenges at play.

3:07And so I'm just really grateful to you today to share more about your family story, because I think it's an important perspective that I would imagine most of us have zero visibility on if we're not living, you know, the life that you are, because it is very behind closed doors, or at least unless you're in it, it is. So I think just as a kind of entry point to all of that, I would love to just hear a bit about you, your life, who you are, and a little bit more about your family and what that looks like. So let's start with me, perhaps, because that's the easy part, I think, in the grand scheme of things as well.

3:44So I'm a mother of two children. I'm a founder of an organisation called Humankind that's based here in Copenhagen, where I live, but works very much internationally. I am Polish originally, but I lived in the UK for a very long time before I moved to Denmark six years ago. So that officially makes me leaving the court for more than half of my life now, I think. So I call myself international more than I call myself Polish at this point as well. But of course, the roots are there. And I do happen to have a quite an unusual, I would say, life and family setup as well, because I have a younger son called Matthias, who was born five years ago, nearly exactly, and is here in Denmark.

4:30And it turned out that his birth sort of shot my family on a trajectory that was completely unexpected, because to a complete surprise and shock, it turned out that he has a very rare genetic condition that he shares only with 200 people in the world. So it is classified as ultra rare. That is the official term for it. And that sort of set our course on the path of raising a child with a physical disability, with learning disability and with autism as well. That was diagnosed last year. So I feel like the last five years have probably given me more gray hair than you know but also really really they have but looking back from today's perspective at all that happened and i know that you know it also opened up the space for so much sort of richness of experiences and what like is and what like can be as well that frankly i'm only counting my blessings that are coming and coming so that's in short on me and a few words about my family as well because, you know, Matthias' appearance in the world has definitely changed virtually every single area of life that I can possibly think of, whether it's myself, family, work, you know it.

5:46So firstly, that's just a really beautiful description of what your family looks like, and I think is a really inspiring way of framing the fact that you have found yourself in something that is you never planned for, you didn't expect, that as you put it, you've been shot on a trajectory that you had no idea where it was going to take you or how to handle it. And it's really inspiring or comforting, I guess, for somebody who's listening to it, who might not be there yet in that mindset to know that one day you can have that sense of we're okay. And actually there is a sense of almost gratitude towards the twists and turns that life threw your way.

6:23But I think it would be helpful to not gloss over in those early days, how that must've just flipped everything upside down and been really, really difficult when you were trying to help Matthias and understand what was going on. And especially given that he's got such a rare condition, like how to even get to that point of diagnosis must have been such a stressful process. Can you take us back right to the beginning? How did you know there was something not quite the way it was supposed to be? And what did the process of getting him that diagnosis look like, both for him, but also for you? Yeah.

7:02So it was, again, completely unexpected because, you know, we already had one child, my oldest son, who was born in London, absent, you know, typical pregnancy, typical boy, you know, from a sort of medical perspective, right? My second pregnancy was absolutely fine as well. A little bit straight because it was in the COVID time. So of course, you know, the experience was different, right? But nothing, you know, nothing, nothing flagged in terms of anything abnormal more going on. And, you know, I had two home births as well, which obviously indicate that this is, you know, a safe situation to have a baby as well.

7:35And that's what we did. But after Matthias' birth, I mean, firstly, he was born quite underweight, which was a surprise to everyone. We had to weigh him twice to really see, you know, that the number that is coming up is really coming up because he didn't look like he was so underweight, but he really was. But then again, you know, he was okay after birth and everything was fine. So we just stayed home and sort of, you know, went on with the blissful family life that we envisioned, right? But as time went by, certain things started to not really make sense for us because he would cry quite a lot.

8:10He would be, you know, gaining weight and breastfeeding and all that. And, and it was all fine on that front, but he would cry a lot. And I remember in the first months, you know, I was obviously on maternity leave, which is a year long here in Denmark, right? I was just sort of going about normal life, which I felt would be totally manageable now that we already had one child and knew what the first year looks like. But he was crying a lot. He was unsettled quite a lot. And everything was difficult. Cooking a meal was difficult. Going for a walk was difficult. I just couldn't do the things that I remembered that I could do the first time around.

8:44right and I remember as well being into myself when Matthias was around like five months that was the time when we moved houses when my oldest son was five months right and I was thinking to myself like how could I pack the entire house into boxes you know and how could I do this then and right now I can't even do the basic things but it sort of didn't cook at that point you know but things took a very bad turn when he was around five six seven months old and that's when he ended up going to a hospital quite a lot because he seemed to be in tremendous amount of pain and no one could explain what it was and we saw it he started having very serious eating problems as well so again instead of thinking oh i forgot how to breastfeed i mean all the all the things you know that just crazy things that come to your mind to try to explain the situation as well and find solutions right so it was a roller coaster at that point because he was nearly crying non-stop not slinking almost at all and starting to not be able to eat food any food whatsoever and i know now why this started happening because as his body was growing the condition that he has means that his body cannot produce inactive dopamine and dopamine is responsible for many many different functions in the body but one of them is muscle control it's a neurotransmitter which means that it gives the brain the right messages to then send to the body for the body to work in a certain way whether it's for us to eat right or for the muscles to to move right like all the different muscle functions and he was just running out of it and that's what's prevented him from faceless eating from hitting milestones like you know rolling and all of the different things strike and it became quite apparent that it wasn't a typical child by any stretch and that we needed to find a cause of what was going on so at some point and that's a moment that I remember I just I just will never forget in my life you know we went to our GP who was following us from the start and I don't remember Matthias one morning was crying so much that I literally at some point I thought like I just this is it like I'm done there is nothing else that I can do no other breastfeeding specialist or whatever that I can go to.

11:01I'm just, I'm done. And I called the GP and I said, listen, tell Dr. Dominique that was her name. I'm coming with Matthias. I don't care. I don't have an appointment. I don't care. Like I'm getting in the car and I'm coming to Dr. Dominique and I hung up the phone, you know, I said to my husband who was working from home, but then it was COVID time. So it was a lot of that going on, right? And I said, listen, I'm going to the GP because I'm done. Like something is wrong and I'm just going to go. And we went to the GP and the GP examined Matthias, you know, and said, listen, I see something might be off, but I can't exactly point my finger to it.

11:33But if you tell me that your intuition is telling you that something is very wrong, then I'm going to ring up the hospital right now and you're going to be on the way to the hospital. And I said, yes, ring them up just based on, you know, my feeling. And he went to the hospital and he got a nose tube through which we could feed him. So he would calm down and not be hungry. And he was still in a lot of pain, but at least, you know, slowly, slowly we started to unravel what exactly was going on. And although no one could say, it was also really lovely in the hospital to see. I mean, it was lucky.

12:08It was the most stressful time even possibly imagined. I mean, seeing your child in a lot of pain and, you know, no amount of paracetamol or calcule or whatever can help, right? It was absolutely horrifying, but at least we're in a safe space and I felt like, okay, we're getting somewhere because we had these, all of these neurologists coming to our room, you know, to see Matthias, because by that he was already famous as, you know, the baby that no one knows, you know, what's going on with and so on. And these neurologists, you know, they were coming to see him. They were expecting all the different things like cerebral palsy or, you know, some kind of movement disorders and so on.

12:41And they looked at him and they were saying, like, I literally cannot understand what is happening just by examining him. And they asked me, you know, like, what do you think? What do you think is happening? And I said, I think that to me, his brain isn't sending the right messages to his body. It's like something is going on that is just, there is some disconnection, you know, between what he wants to do and what he's able to do. And they said, yeah, you know, I think that's that. And at that point, one doctor in Copenhagen who specializes in rare diseases picked up that case somewhere in the system, you know, she ordered the most complete examination, the most complete test of the human DNA, which is called the whole genome sequencing, which basically checks everything that can be checked in our body.

13:30She did that on Matthias. It's a blood test. She did that on Matthias and me and my husband. And three weeks later, it turned out that both me and my husband are silent carriers of a gene mutation that has 25 % chance of activating that rare disease if we have a child together. So our oldest son was in the 75%. Our younger one happened to be in the 25th descent. That condition is called tyrosine hydroxine deficiency, which is a very, very, very rare condition, which basically means that your body isn't able to produce dolfamine. And if it's not treated with dofonine, it's light-threatening. So from that moment, we got connected to the rare disease unit of the main hospital here in Kockenhagen, where we arrived very quickly, spoke to the doctor many times in the meantime as well, and got a bottle of medicine that from that day on, we had been giving to Matthias every single day, three times a day, because that is basically what keeps him alive.

14:31And that was absolute insanity, you know, on so many different levels, because the time of the diagnosis, you know, the time of the days after as well, as we start him on the medication and we start seeing, you know, after a day or two, I remember sending a message to the doctor saying, listen I think he's not in pain anymore like I could cook dinner and he wasn't crying it's slowly slowly it's called you know a miracle drug the medicine that he's getting it's not really even medicine it's just an ingredient that normally our body has but he needs to have it supplemented right because it really starts to help his body function in a way that is close to normal or as close as possible right and slowly slowly things started improving right so he's still very untypical right he started walking at all so a year ago exactly he's carrying minimally speaking because again to speak it's a lot of muscle you know fine motor movements that need to take place as well and everything needs to be arranged well from within the body so so he's starting to speak right now he's very good at saying no to absolutely everything like we're in a proper you know toddler stage no to everything you know but he says no if he says mama you know he says I pass I mean the key things yeah no mama and I pass and yeah and it's been obviously much much much much easier right now compared to five years ago when you're going through that point of diagnosis right but we're very grateful for where we are today let me call it that way time is on our side at that time I mean gosh where's it even begin so there's just a few things there that or twists that I didn't expect that story to take so firstly as you were describing those early months, I was thinking about how many people, parents, are totally dismissed when they're saying my baby is crying all the time, they're not sleeping, they're not feeding.

16:24And that's dismissed as kind of like, oh, maybe they're just colicky, just it will pass. Oh, yes. And we had so much of that. I can imagine. But you know, the thing is, in most babies, that is the case. In most babies, it's a phase. And we know that right and we know that that these places will pass but sometimes I feel it's a it's a combination of you actually putting your foot down and saying I'm done with this like we have to do something about this because something is wrong but also having enough luck to have people around you who actually treat you seriously so that doctor who said if you feel something's wrong I'm gonna leave the hospital now and she did that just because I felt something was wrong You know, it wasn't a typical medical process, so to speak, right?

17:11No. And it's just that the power of being believed, I think, is it can be life changing when you're, especially when you're parenting and you just know there's something not right. And nothing, there's no reason to that more than intuition. It's just that understanding and awareness you have of your child that's deeper than anyone can ever have. Exactly. key. I could feel my, what do you call it, you know, goosebumps on my arm when you said that, because I know what that feels like to just be believed, obviously into a much lesser degree, but it just can be life-changing. And then I think the other thing I was thinking was, how on earth did you survive no sleep, the constant crying, also having another child that must have pushed you to your absolute limit during that period?

17:59it? Yeah, it really did. And that was the hardest because it wasn't just, you know, non-sleeping because we have a baby. It was non-sleeping because he was in so much pain that his body wasn't able to, you know, rest. And the only way to help him was to actually rock him. So either me or my husband would just stand with him in our arms and just sort of rock him to at least get some chance for him to rest, right? And that went on for months and months. It was absolutely harrowing, both for me and my husband. It was harrowing. we were definitely very very very unwell and very quickly after the diagnosis well actually in the very first meeting we had with our rare disease doctor and my husband was of course working at that point right and she said to him you know you're not coming back to work and he was up where what do you mean you know like he didn't even know what to say to that and she said to him you realize this is a very serious situation and your life will not be the saying from now on and you are not coming back to work because in Denmark we have a system that allows parents like you to take time off still be paid as if you're at work and you both need to take care of your child right now and you're at the child of course as well and you will not either to fit work into that at all and my husband was sent on one year leave so that we both can take care of both of our children.

19:26So thankfully, I will forever be grateful for Matthias to be born in this country because I know that's not the case in so many other countries. And actually, part of the survivor guilt that I feel is that he happens to simply be born here, where those support systems exist, right? So we still didn't sleep. We still had a lot of problems, you know, in the months to come. It took many, many months for him to be able to feed well. So we had the NG tube through the nose for many months, I think seven, eight months. from that point. And, you know, we had to learn how to feed the urban dose throughout the night as well, how to give him the medicine.

20:02It's a very specific medicine that he's taking that is really administering it as more art than science, let you tell you. We had to learn about how his body works and how the doses actually affect him and constant feedback and constant communication with the hospital as well. But we're pretty resourceful people, you know, so we sort of took it in our stride. And there was something that my husband said at some point, which is if there is any chance that someone can take away the pain that our son felt, then we promise that everything else we're just going to take care of. And that was granted to us.

20:37So everything else we had to take care of, which we have and are still taking care of. So yes, it was a nightmare. It was an absolute nightmare. And there is no way to sort of gloss over it either because there is one thing as well that we learned with regards to Matthias's brother that we went very early on is when you have a child with disability the sibling of the child is very often referred to as the glass child i don't know if you've heard that expression no i haven't and the glass child is called the glass child because they are transparent because the child with the disability requires so much of your attention and time you know and and focus that the sibling or siblings, they just need to fend for themselves.

21:21And we learned about this very, very early. And we got both so terrified of that term. I mean, it was absolutely, it was just terrifying, right? That we said to ourselves, okay, so whatever we do, we need to make sure that Tommy Matisse's older brother is okay as well. And that is not on the receiving end of, you know, the consequences of the fact that his brother is so not a gay complex right so that's basically amounted to putting all our attention focus and resources and whatnot into both boys and obviously that in consequence had tremendous impact on our own well-being and health you know physical mental and you name it so um you know you had to make a compromise somehow but it definitely was a very difficult time for a very long time i can really, I mean, I was going to say I can empathise, but I can't actually imagine how hard that is.

22:14We have children, my oldest is five and my youngest is just under two. And just trying to make sure that our older son feels like he has the attention that he needs is such a challenge. And it's something that I feel huge guilt on all the time. And you know, you always feel like you're just not doing enough for either, like you're trying to give everything to both children and you wish you could split yourself in two, but you can't. And that just creates a lot of sort of anxiety or pressure. And that's without the additional, I mean, the glass child term is, I can really picture that, how that older one or the one who doesn't have the medical things thrown in the mix that they just learn to just sort of like get on with things because they kind of have to.

23:01But how wonderful that you are aware of that, you know, that risk. I don't know how you're doing it, how you're finding the capacity to support both children as fully as you are, but you sound like amazing parents. Well, I think all parents, what you mentioned just now in terms of feeling guilty and always feeling like you're not doing enough, right? All good parents feel that. And if you feel parenting is easy, you're probably not so creative. Okay, that's a reassuring thing to remember. Well, but it's true, isn't it? Because we all have different things going on in our lives and it doesn't have to be a child's disability I mean just you know life happens to everyone to put it mildly right and and there are challenges from time to time that that affect us all and no one has a smooth ride I would say right so we can all relate to each other even if the experiences themselves may not be exactly the same yeah so I would never say that oh we have it so much harder than our other families and sort of put myself in this victim mentality of course sometimes I wish my life was what I imagined it to be right and there was a very long process of grief as well to sort of process it for me as an individual right but I also know that there are I know so many families right now who have children with terminal conditions they would love to be in a place where I am yeah I know families whose children passed away and they are still yeah they're still going you know not to say that it's easier or harder.

24:35I mean, life is what it is and you just have to make the most of it, I would say, in any situation, right? So you can always find sort of worse examples and better examples in that sense. And I don't think there's any point, you know, comparing these because we end up in very strange thoughts in our heads, you know, that may not exactly be helpful at all. But it sounds like you've had to do some significant work to move from that place where you've said we weren't very well mentally or physically to where you are today, that that's been a process or a journey that you've been on. What has that looked like for you?

25:14How have you helped yourself to kind of move from crisis mode to something that feels a bit more sort of sustainable and where you're thriving and well? Well, certainly a lot of therapy. And that was for both me and my husband as well. And I definitely would recommend that to anyone in general. But in our circumstances, it was very important to talk through these things. Sometimes, you know, we had sessions together as well that were very helpful because when your life gets thrown upside down, right, it affects you both as well. And it's nice to be able to talk about, you know, how that affects our relationship as well and our ability to show up for the family, for each other, for ourselves individually.

25:55Right. So all of that was definitely very, very helpful, very time consuming and very long, but certainly very helpful. What all of these events also taught us goals was that we actually can be very selective about where we put our energy and our focus about who we engage with and who we don't. because one of the major revelations, I think, for us both was that when you have so few resources and energy and you just have to survive the days, you cannot be calling people up to say how they are. You cannot be, you know, I don't know, sending an email to someone because you were supposed to send it two months ago and you forgot.

26:36And you just become so selective about who you speak with, who you engage with, and everything else gets absolutely cut out completely. And that actually has been very liberating. It was liberating at the point and it still is today because you realize that a lot of the relationships that you keep maintaining in your life, it's actually not, I mean, it doesn't make any sense to continue doing that whatsoever. And then guess what? You know, the world, the life goes on and it's fine. So it took a few months as well. And it wasn't like we thought about it ahead of time. It just sort of happened organically as well that some relationships just sort of went away from your life and some of them came in.

27:22Because what was also another revelation was that some of the people that you thought would absolutely be by us 100%, they were nowhere to be found. and some other people when wearing you know the legs that things right and some other people that you thought were just some kind of casual acquaintances they actually went out of their way to really step in and help with the practical stuff and that goes for friends or very close family members which was very surprising to us as well and added a lot you know the grief and the emotional processing of what was going on and it has taken years and it's still taking time you know, to redefine like, what are those relationships that we deliberately want to maintain versus those that maybe we just need to let go of.

28:09I come from, you know, a very people pleasing culture in Poland, especially for women, right? So for me to wrap my head around the fact that I don't need to be going around checking on everyone, because guess what? I'm the one that deserves being checked on right now because I'm really unwell. And that was a major leap in my head to make, you know, and there was a lot of unlearning of old habits and things we're supposed to do just because we were supposed to do them. That was a major, major, major help as well to go through that process and really cut what's unnecessary. And I know it sounds horribly transactional.

28:45I realize that fully. But when you're so stretched, that's where life needs you and you need to, you know, you just need to do this. I don't think it sounds transactional at all. I think it sounds absolutely essential and also just so understandable that you have to go through that shedding process of anything that is not helping you to move forwards because that process, even in the best of circumstances, would be really challenging to move forwards through a life-changing event like this. So to do it with anything that is pulling you backwards or not serving you would be not survivable, really.

29:25So I can totally understand that sort of unlearning process of how to feel confident and comfortable in actions that maybe go against the way you've been conditioned your whole life. That is a real process. Yeah, and it's long. It's so long as well. I mean, it's nowhere near done, you know, in a way it's constant work as well as like sort of, you know, goes on as well. shows different challenges, right? But definitely instead of having a very, very practical view of what relationships are in your life and which are the ones that are actually the right ones to go forward with, that is a very helpful exercise overall, you know, that we just happened to be first to get into it.

30:06But I'm also thinking about, you know, all the other areas of life as well that helped in that time in a very practical way. So one of them was definitely thinking about work and what that part of our life would look like, right? Because as I mentioned, we had a lot of support from the daily stage, right? In terms of our ability to take care of our child. I returned from my maternity leave at the time that I was scheduled to retire. Matthias was then one year and something and in a much better shape at that point. Still not really, you know, typical, but much better shape. And my husband was with him at home for six additional months as I returned to work.

30:43And very quickly as well, it turned out that the way work is designed and I've been in the corporate space, right? And loving my job, I should be loving it. I mean, it was amazing. I just loved it, but I just couldn't go on with it. And I tried and I nearly killed myself over it, you know, and until there were calls with my manager when I was literally breaking up in tears and saying I cannot continue doing this. Right. Because the heaviness that comes with, you know, having a disabled child and also coming to terms with the fact that your child will be with a disability all his life and everything that comes with it.

31:22Like, will you outlive them? How are you going to do all this if he needs care until he's an adult, for instance? I mean, all the random questions that pop out all the time, right? And you put this in the context of where you are as a professional as well. That was a very hard thing to do. So at some point I parted ways with my corporate career, even though I did love it a lot. And that was absolutely the right decision as well, because that allowed him to really have a break and have some mental space to think about what it is that I want to do. Because the one thing that is needed for parents like us is quite radical flexibility.

31:57And unfortunately, the world of work these days is not always guilt for that. Right. So we need to find a way that actually works for you so that you can at least have a go at driving and not just stay in a constant loop of trying to survive the days. This idea of radical flexibility is, I think, central to being able to thrive in parenthood if you want to be a working parent. And that's in inverted commas, a typical scenario, I think. Even the most ordinary of family structures need radical flexibility to thrive. so I can imagine that if you throw in complex needs into the mix that it's just a non-negotiable and on a previous episode I talked with a lady called Lizzie Penny who's kind of coined this term of work style which is like if you have your lifestyle you should have your work style which is like how best do you work in order to show up meaningfully and fully with all of your thoughts and ideas and perspectives that make you an invaluable asset to the workforce like how do we create space for you to show up without trying to force you into a box that you are never going to squish into.