My Strong Little Journey - Linda & Celina- Love & down Syndrome
I’m just so excited to share this with you all. I’ve asked real Mums and Dads, with real experiences of paediatric physiotherapy to share their story with me (and you); to let their guard down, and tell it how it really is on the other side of the fence. What it feels like to be the “parent of the patient”.
Sometimes the journey will be nice and smooth and simple. All the loose ends can get tied off nicely. There is a beginning and an end. A cure even. (Am I allowed to say that in the Physio world? I’m not sure.)
But more often than not, having a child with a health condition can be really complex and messy. It’s a long, winding road. It can be tough on families.
I am sure it’s not always going to be easy to talk about. Some of these Mums and Dads are going to need to be brave in telling their version of events and I’m incredibly grateful to all the Mums that have already put their hand up to share. I am hopeful in some cases it will be a two-way street; I know how much solace I find in writing. I’ve asked these parents to tell their story how they would’ve liked to have told their own friends and family. What they would have liked to hear themselves in the early days.
What I do know for a fact, is that this is going to be an incredibly helpful and reassuring place for Mums and Dads going through similar experiences themselves, and I am sure it is also going to be really valuable for therapists too. Giving us the opportunity to walk in their shoes, even if just for a moment, is a wonderful gift these parents are giving.
So thank you for sharing your story today Linda.
I thought it only fitting that Linda’s story be the first that I share with you all, given I have known her for so long, and she’s been such a big part of my life as a therapist over the last few years. (Those following me on social will also recognise her little girl from quite a few of my posts. She is my ‘poster girl’ from the clinic and I just adore her. )
So without further ado, Let’s hear about Linda and her little girl celina, and their own ‘Strong Little journey’.
When Alana asked me to share our story, I was so delighted.
Mostly because, I know how much it has meant to me hearing what other people go through and recognising my own struggles in theirs. Just to know, you are not alone is huge, and makes continuing on so much easier. Anyway, a quick intro - I live in the hinterland of the Gold Coast, with my husband Brad and two kids, Celina and Aari. This story is mostly about how our lives radically changed, becoming parents, with the added bonus of life with an extra set of chromosomes.
Before we had kids (in retrospect), life was so easy. We went to work, we came home. We slept in on the weekends, or week days (thank you shift work!). Sure we had struggles here and there. But in general, life was pretty easy. It took a whole two minutes to decide to leave the house, grab the keys and go. Little did we know, once we brought that precious little baby home, life would never be the same.
When I first I found out I was pregnant, I was so excited. I’m a midwife by trade, so the thought of getting to experience the other side of pregnancy and labour was both wonderful and a tiny bit nerve racking. Until I got to 6 weeks pregnant and some serious morning sickness kicked in, whilst we were doing our second honeymoon, road tripping around New Zealand. I literally spent most of the trip asleep or throwing up at iconic locations. It was horrible. But a realistic welcome to the world of pregnancy and adjusting to parenthood.
Once we were home again, the weeks gradually passed as I attempted some post grad studies. I was counting down to the 20 week mark, when we could finally see our baby. I had reassured my GP I didn’t need the 12 week scan, as the results wouldn’t change the course of our pregnancy and I knew I was in the “low chance” age bracket anyway. Boy was I naïve!!
20 weeks finally rolled around and we headed off for the wonderful first glimpses of our baby. The 3D photos were quite creepy and alien-like, yet incredible at the same time. I loved getting to see every bit of detail on our precious baby. The sonographer flagged a few areas that were not exactly normal, like an under developed nasal bone and short femurs. So it looked like our baby was going to be short, my husband and I aren’t exactly tall people either, but she said we might need to follow up with the NIPT test and a visit to the GP.
That night I quickly consulted ‘doctor google’, trying to figure out what these findings could mean. What was an NIPT test? I seriously question how I did not know more. Google, wasn’t overly helpful, but I did read the nasal bone lacking calcification can be a marker for Trisomy 21, commonly known as Down Syndrome. It also happens randomly in 1% of pregnancies. We went off, had another scan and got the blood test for clarity. I reassured myself we were probably the 1%.
A week or two went by, as we waited for the NIPT results. We went away to visit family and share our news. One morning I was woken by the GP calling with the results.
“Linda you need to come and see me straight away,” he said, very urgently. We had already played through what we would do, if we got the “bad news.” I was in Sydney, so it wasn’t possible. So he quickly blurted out;
“Your baby has Down Syndrome.”
I reassured him it wouldn’t change anything for us, despite him sounding very concerned and discussing we had grounds to terminate. By now, this wasn’t our first conversation with medical professionals around termination, they generally had a strong push towards termination, so we had to defend our stance. I found that hard.
A few weeks later I had my first hospital appointment with the obstetric team. I was so excited to hear my baby’s heartbeat and that was probably the only good thing about that appointment.
For the fourth time I defended our decision around termination. The doctor may have been doing her job, but she spent most of the appointment listing every possible thing that could go wrong from pregnancy, birth, right through the lifetime of my child.
She didn’t tell me the joy my baby would bring. She didn’t say how delighted I would be when my baby looked me in the eyes, smiled or said mum for the first time.
It was depressing. She made sure I had supports around me, as this was going to be a “difficult time” then sent me on my way. I had lunch with a friend straight after and said, thank goodness I know life is more than a long list of medical issues, because there was no hope in what the doctor had to say. I’m sure I cried the whole way home. And hoped I would never have to see her again. Thankfully to this day I haven’t. I still get nervous I will bump into her, with subsequent pregnancies and hospital visits.
It has taken me three years to realise, around this time, several health professionals asked me;
“Has a doctor provided counselling around the results?”
I just said yes, to get on with things. But in hindsight I realise, no one really talked me through things thoroughly. Yes, I was told the long list of the bad. But no one ever told me the great and wonderful things that would happen to me, getting to be a mum of a child with Down Syndrome or a disability. Or even just getting to be mum. I don’t know how to fix this issue, it’s a common thread and a bit of black hole in the system. I think the closest person to hit the mark was a Paediatrician we met just before she was born. He talked about potential issues after birth and later in life, and then shared a YouTube clip, put together by families all over the world for World Down Syndrome Day, called, “Dear Future Mom”. I still cry every time I watch it, but it is a good depiction of being mum.
Outside of hospital appointments I put on the happy front that everything was fine. My baby was just a bit small, and only told a handful of people what was really going on. My husband and I shed many tears during that five months. I was adamant I wouldn’t let any medical negativity steal the joy of my first pregnancy, but some days it did. The fear of the unknown. I didn’t want to let any stories scare me off, so I refused to read any online information about DS.
If our child did have Down syndrome, they could be the one to teach me about it.
A little naive again, but that’s how I coped.
Two weeks later I met the wonderful and amazing team that work in the Maternal Fetal Medicine unit. Although I dreaded bad news at every fortnightly or weekly appointment, it was a place that celebrated with me the joys of being pregnant. The midwives were incredible and when it was time for our little one to be welcomed out into the world, they visited every day, including when I was labour. They laughed with me and cried with me, and I cannot speak more highly of them. I secretly wished they would employ me, what a great place to work!
Due to our circumstances, the water birth I had envisioned was not remotely possible. So, when the time came, I did my best, got super cranky at Brad and then made the call for an epidural. Like so many women I’d cared for previously, I was on the ready to declare my love for the anaesthetist, but was too exhausted so fell asleep. A few hours later I woke to hear some exciting news, our baby was almost ready to make an introduction to the world! As per usual, the heartbeat was no longer reassuring, so we did a few pushes, then a quick ventouse delivery. Seeing as we had an exciting medical history, we had a welcoming party of about 8 doctors and midwives. Brad woke up just in time for all the action and looked as though he was about to vomit and faint at the same time. Thankfully he just sat down and recovered, then together we took in the beauty of our baby girl.
Yep, we had a girl and we were in love. Her beautiful little eyes looked up at us and our lives were changed forever.
We named her Celina Amelie, meaning heaven and industrious, or hard working. I think this is a great depiction of her, she is as lovely as the heavens, but has worked so hard to get to where she is today.
Celina weighed a mere 2.4kgs and struggled to stay warm. So she spent her first week, sprawled out, sun baking under a heated lamp. She was pretty sleepy, so we while we tried to figure out breastfeeding, she also got milk through a nasogastric tube. While in hospital we made and became friends with another family who had just welcomed their a baby boy into the world, he also had DS. We are still close friends with them today and for many more years to come I hope. The support we received from them and the tears we shed together, especially in those first months and years, is invaluable.
We were fortunate to take Celina home on day 7. It took about a month before we could say goodbye to the tube for good. By that stage she was getting quite good at ripping it out herself. In a lot of ways, she was a dream baby. I remember boasting to a friend, that she only pooed once a week and by six weeks she was sleeping through the night (of course this stopped by 6 months.) She was so content, that if we heard a small peep out of her we came running, because it must be serious!
I put a lot of work into getting her to breastfeed and when we had finally been given the all clear to exclusively breastfeed, she refused. I hadn’t heard of breast refusal, but it was heartbreaking for me. By three months (in the middle of summer), she actually refused to drink anything at all. Our brilliant speech therapist hinted that it was probably reflux. I was truly a first time parent and felt guilty for not realising it sooner. Starting reflux medications was such a turn around for her. She smiled for the first time just after that (hello mummy guilt!), but we were just so happy to see her happy and drinking again. During this time, I had been pumping like a trooper. Day and night, and so sleep deprived. It wasn’t until I cut back a few overnight pumps that I learned you only need to wash your pumping kit once every 24 hours. Since then, that is my message to the world. Oh the hours of sleep I could have had!
When Celina was born the doctors told us she had hypotonia, or low muscle tone. It’s quite common in kids with trisomy 21.
We named her Celina Amelie, meaning heaven and industrious, or hard working.
Alana will be the expert on this one, but from my understanding, it means the muscles don’t have as much tension, so kids or adults with hypotonia have to work extra hard to use their muscles. For Celina, this affects most, if not all of the muscles in her body. At birth it made breastfeeding and bottle feeding difficult and tiring. It also affected her ability to lift her head, digest food through her gut, everything.
At about three months we were encouraged to look at starting physiotherapy for Celina, to get advice and support for the hypotonia. We had been recommended someone who worked in the water (hydrotherapy), but before this we needed a “land” physio to do an assessment for us. Cue the wonderful Alana!
When we first met, I remember thinking, she’s lovely and so nice….but do we really need to come back every two weeks?! I thought it was a simple report then that was it. Hahaha, once again, boy was I wrong! Alana instantly picked up that Celina had a flat spot on her head, and a preference to having her head one side. (We had actually noticed this, but probably didn’t realise the significance). She gave us tools and tips to help with that. We did such a great job at getting her to turn the other way, that Celina then preferred the other side too much and we had to work on the same again! We also started working on bringing hands and feet in, and eventually working towards rolling. Most appointments I would leave so impressed with the level of Alana’s knowledge of development. She literally knows every little micro step; steps you take for granted if you have a typically developing child.
Celina during one of her first physiotherapy sessions, practicing tummy-time.
I’m sure my repertoire of kids songs wouldn’t be what it is today, without Alana. I soon learnt that many therapists use music and singing while working with kids, but Alana by far, has the biggest range of songs I’ve heard. Even to this day, I am still amazed at how she thinks of all these songs?! Most importantly, Celina loved them. They were the songs she learned to roll to, to walk, stomp and hopefully soon jump to!
I was so proud on the day Celina did her first roll. In those early days, it was a huge tick for me on her big milestones. We had spent three months of exercises, attending appointments, practicing rolling down wedges and just like that, she did it - while I wasn’t looking of course. It was timed perfectly with her being six months old and World Down Syndrome Day (WDSD). We were getting ready that morning to attend our local mothers group, and I had her all dressed up in the classic WDSD odd socks to celebrate. The sad thing was, I didn’t have the heart to tell anyone.
It wasn’t until another mum asked, if I’d lost her other sock, that I mentioned it was World Down Syndrome Day and she was wearing odd socks on purpose. This mum soon opened up and shared to me her own lovely experiences of a family member with Down Syndrome.
This day stands out in my memories, as just a classic moment in those early days: seeing all the other babies, younger than Celina, crawling around, eating cruskits or whatever solids they found, with no difficulty at all. And there I was, trying to awkwardly juggle double pumping, while watching Celina laying on the floor with a toy and worrying about if she would drink her milk and would I hear if she aspirated or choked? It was a daily fear, as she had swallowing difficulties, so it became a fine art feeding her, much more difficult in a crowd. I felt guilty for the days I didn’t make it to the group or for rocking up an hour late, yet I was so exhausted from attending appointments every other day. I would often cry the whole way home and felt like I didn’t fit in and was failing as a parent.
It has only been in the last year, after listening to the brilliant ‘Too Peas in a Podcast’, that I now realise I was grieving. Grieving the life I thought I would have, grieving that life was so much harder for our kids with low muscle tone.
I remember saying to my hospital friend — it is just not fair! And they had far more medical issues than us, but it is heart breaking. You truly want the best for your child, and to see them struggle when others put in zero effort to do the same is almost soul destroying. I didn’t acknowledge that I was unhappy at the time, because I was so overjoyed and delighted by my girl.
Getting bigger and stronger with her physio play at home.
When it was just us, I was happy. I began to see her personality come out, and I knew she was worth more than what she could achieve.
Yes, I still worried about whether she could hear me and see me. She often wouldn’t turn when I walked in the room. But I soon learned she is an absolute people person! She loves people and was ‘that toddler’ in Bunnings and Ikea, reaching out to strangers for a cuddle. Not anymore of course, but it’s a cute little picture of her heart and personality.
As the months went by, Celina became more and more assertive and grew in strength and capabilities. By her first birthday she was sitting up. Then a month later I caught her in the cot rocking on all fours. Alana and I had done many sessions preparing for this day, I was so excited and proud of her. At the time we were visiting family overseas. There is nothing like a holiday for kids to kick into gear and bring out a new skill! Celina loved to practice in the cot first, when it was just her, so I would sneak in her room and try and watch her mastering her skills.
Two months later on Boxing Day, she did her first little crawl. Brad and I were cheering her on like crazy. Over the next few months she became stronger and more confident with her crawling. She progressed from crawling around the lounge to being able to crawl from one end of our apartment to the other. I was so proud of our girl. Six months after that she became a big sister to Aari and has loved every minute of it! Aari was one of her first words.
Even though her extra chromosome has added some challenges into her life, in some ways it has advanced her. Celina is very emotionally in-tune; we saw this especially when we were expecting Aari.
She went through a patch of weeks of sleepless nights and would be cuddling me and offering her dummy to my big pregnant belly. She knew something was up. When we got home from the hospital, she wanted cuddles with Aari every minute of the day, sometimes to the point it was overwhelming for me! Now they are best of friends and get into all sorts of mischief together.
Being pregnant with Aari and watching him develop and tick off all the milestones brought back a whole lot of heart ache from the past. I didn’t think of myself as an anxious pregnant mum, but I look back now and see it. The whole nine months I was on edge, waiting for a diagnosis, waiting for some bad news.
We were discharged from hospital the day after he was born, without seeing one doctor. I tried to tell Brad this is what it’s meant to be like.
There was no running around to lactation appointments every two days or spending hours filling out paperwork and organising medical appointments. It was simply take the baby home, feed him, but him to sleep and that was that. In some ways Aari has been more hard work than Celina. We never had to baby proof before him! It almost seemed effortless, how he learnt to roll, sit himself up and started crawling. In comparison, we had spent months with Alana on all the micro steps this involved for Celina, while Aari went from sitting to crawling in 12 hours! We were of course so glad for Aari that he had no difficulties in this area, but we didn’t perhaps jump for joy to the same degree as when Celina did her first crawl or sat up by herself. She had worked a lot harder to achieve the same things.
But I should say this, I did really enjoy singing “Heidi-Ho” and practicing all the pre-rolling manoeuvres when he was really little, for old times sake. :)
A few more months down the track, again at Christmas time, Celina took her first steps. It has been a long road, but she has just gone from strength to strength since then.
Now she’s running around (it does look a bit like a Kath and Kim speed walk), practising her jumping, and swinging off things at any chance she gets. I get so much joy from seeing her do things Alana has talked about, knowing she has reached that next mini step towards our bigger goals. I feel so privileged that we found Alana when we did. Although I doubted her sometimes in the early days (is it really necessary to buy a peanut ball and a wedge??) in retrospect I would say yes! You will use those tools for many years to come and they’re great fun. I have always loved how she could relate to her own parenting journey and that made me trust her a little more. I know it probably shouldn’t, but it did.
Celina now, age 3, with her brother Aari and her adoring Dad, Brad.
These days, physio is the funnest it has ever been. Celina is beaming with joy when we we get there and I’m usually dragging her out the door when it’s time to go. She loves it, plus it’s also a little inspirational for me, as Alana has so many games to play that work on both physical goals and cognitive development too.
I love that in all the mini hurdles Celina has had to overcome, she does it with a smile on her face and it doesn’t get her down. I guess that’s most kids; resilient. And they just keep trying. I know from my own experiences (for eg. skiing), I just don’t have that same motivation to keep trying, when you fall over a million times. It’s inspiring to watch as Mum and I’m so proud of my girl. I will happily gush and as Alana knows, show off photos and videos of her kicking goals. I so love that I get to be Celina’s Mum, and both Brad and I wouldn’t change her for the world.
Even though life hasn’t been the easiest for her, she has opened our eyes to the incredible community of people that work with kids with additional needs. Some days I think, thank goodness for the therapies we get to do and all the adult chats I get to have, that the average parent probably misses out on.
I mean, not every day am I overjoyed to drive for 45 mins to the next appointment, but generally I love our team. I’m so grateful for the support we receive and so glad to have our eyes opened to this wonderful community.
I love getting to connect with parents and kids in the disability community. The Down Syndrome community in Australia, is probably one of the bigger ones. We’re fortunate, because that means there is so much support out there. On the Gold Coast, there are quite a lot of families, and I so love it when someone approaches me to tell me about their child with DS. And equally I value the opportunity to share with little ones with DS or a new diagnosis. It’s like meeting a member of the family, even if they don’t realise it yet :)
If I could go back and give myself a piece of advice, I would say be easy on yourself, you are doing a great job. You might feel like just an ordinary parent who is failing. I know I sure did.
I thought there was seriously something wrong with me, because I needed therapists to teach me how to play with my child and how to feed my child. I thought that was a reflection of me. Not the case at all. Some, or even most of these things are going to be hard for our kids to learn, but when they do, you will be beaming with pride and joy.
You will have such an appreciation and adoration for your child, it cannot be compared.
If I could go back, I would tell myself to connect with the T21 Mum Australia pregnancy and birth groups. They have been one of my biggest supports. And connect with all your special needs families and don’t feel bad about it. That’s truly when I felt at home, when I surround myself with people that were in the same boat as me. We laughed, vented and sometimes cried about our lives. But it is great to know you are not alone. And truly, we’re not.
Linda and Celina today.
Note from Alana
I want to extend my thanks once again to to Linda, for opening up and telling us her truly beautiful story of being Mum to Celina and Aari. I hope with all my heart it resonates and is helpful to other Mums and Dads going through a similar experience. As Celina’s therapist, reading this story has filled my cup. What a woman right? Painting this picture of her life with Celina has opened my eyes enormously to what these families go through, and it makes me so happy to know Linda, Celina and their family have such a wonderful community surrounding them. I hope this story has filled your cup too.
Do you have a story you would like to share? Please get in touch. I would so love to hear from you.
